If You Think Lyme is Bad, Meet Babesia
!

[This is part 1 of my 2 part series on Babesia. This one is intended to help you recognize it, and part 2 will address treatment options.]

 

Would you tell a friend or colleague that you thought they had an infection which is difficult to cure?



This is what happened to me while driving to a conference in Orlando, Florida, with a colleague who has been suffering with strange and uncomfortable symptoms for many years. Her doctors all continue to misdiagnose her. 
Why do I say that? 
Because she is diagnosed with conditions, then treated with the appropriate medication, yet there is never any good response and in fact, she sometimes gets worse on the medications that should be helping. 
Does this sound like you?

During our drive together, she had a unilateral headache behind her left eye. She confessed she gets these frequently. She often experiences  pressure sensations in her sinus cavities which were diagnosed as “sinus headaches” and treated unsuccessfully with standard medications that should relieve sinus headaches.

She shared other symptoms which I recognized as hallmark signs of a protozoal, parasitic infection called Babesia.

Pressure, pressure…


I knew what was wrong with her. I can identify Babesia very quickly because we have suspected this organism in my husband (despite negative tests) who has been dealing with odd health problems for over 20 years. He tests positive for Lyme so I have studied Babesia (a coinfection) so much that I can spot it quickly with a few hallmark signs.
Tell or don’t tell?

My colleague had a “hot flash” so severe, it fogged up the front windshield of the car. She said these happen frequently, several times a day lately, and yet her physician told her to “not worry” because “it’s just menopause” which she went through 4 years ago.  These were not “hot flashes” and she knew they were not because she knows what those feel like. These heat waves were a completely different animal! Sometimes her forehead got sweaty while other times she had drenching sweats, often at night.  I asked if she explained this to her physician the way she explained it to me and she insisted she had, but was told several times not to worry about it … that these hot flashes would go away in time (despite them increasing in frequency).

Sheesh! To be dismissed like that just kind of makes me mad. This is a lovely, intelligent woman who is very articulate. She knows exactly what a hot flash is, and yet her physician doesn’t believe her.

 She shared several other symptoms, which collectively fit into the bucket of Babesiosis, an infection that responds to medications (but first you have to know you have it).

I did not mention my suspicions to her that evening because it wasn’t the appropriate time — we were busy at dinner, and having fun at our seminar. I also wanted to mull it over and ask Sam what he thought about sharing this (especially since her doctors had overlooked it so long), I didn’t want to be in an awkward position but I also didn’t want to withhold information that (if true) would change her life for the better. She has been to hell and back, like most undiagnosed Lymies who have a coinfection of Babesia. And also, having a few hallmark symptoms of Babesia doesn’t necessarily mean you have that, symptoms can overlap with other infections and disorders, so I was not 100% sure. I told Sam about the incident, and since he has suffered with one misdiagnosis after another for years, and this can be very painful and costly, he felt it was my duty to share my suspicions about Babesia with my colleague so she could have a candid discussion with her physician about testing and treatment.


What to Look for

The name “Babesia” is the name of a genus of protozoan piroplasms which infect red blood cells, and it was discovered by a bacteriologist named Victor Babes, from Romania. There are more than 100 species, however, only about a dozen infect humans and animals. Unfortunately, our testing today is only capable of identifying Babesia microti and Babesia duncani (now referred to as WA-1, and pronounced “wah-one” in case you want to say it).

Babesia causes an array of symptoms that change over time. You do not have to have all of the symptoms at once. Keep in mind, symptoms may change over time. It’s a symptom merry-go-round. In fact, symptoms of a Babesia infection could literally change every few minutes making you think you’re going crazy (but you are not). In case you are curious if you might have it, here are some classic, hallmark symptoms:

Sweats. You might just get forehead droplets, or you may drench your clothes.  This is not a hot flash. The sweats happen anytime during the day, and frequently at night while sleeping.

Thermal dysregulation. It’s like you can’t get comfortable in your own skin, you’re simultaneously hot, clammy and cold. You may go from feeling cold to getting chills, to a drenching sweat within minutes. Thyroid medicine -classically used when a person feel cold- doesn’t get you any more comfortable if the thermal dysregulation is due to an infection. The root cause is really mitochondrial suffering and dysfunction, that’s part of why you feel strange in your own skin.

Headaches. Often these occur in the frontal region, or behind one (or both) eyes and unfortunately, you’ll get diagnosed with a “sinus headache” but it’s not. Sometimes the headache is in the back of the head, or your head feels like it’s in a vice grip. Lyme headaches could be caused by slightly inflamed meninges, or high intracranial pressure, or vascular reasons or all of that.

Lyme (Borrelia) headaches tend to hurt towards the back of your head, whereas Babesia headaches tend to be more frontal (this is not a hard fast rule). If you feel like your brain or your head is smoldering or on fire, this could indicate Lyme or Babesia infection or both. I wrote about this in great detail in my book, Headache Free. One hallmark symptom of Lyme headaches is that they move around your head quickly.




Dysautonomia.  Babesia is an aggressive infection that mildly inflames your brain and/or meninges. This effect will result in hypoperfusion to areas of the brain especially the hypothalamus and pre-frontal cortex; it may also affect your autonomic nervous system. What exactly does this mean? 

Tons of problems in your head ranging from mood instability, insomnia, depression, anxiety and headaches, feelings of disequilibrium, balance problems or tinnitus. The list could go on and on. You don’t have to have everything on my list, you might just have one or two of these symptoms. Or you might have lots of those symptoms but they change hour to hour, day to day, or month to month. But there is always something wrong ‘above the neck.’


Heart palpitations. Cardiac irregularities are pretty hallmark. If there’s anything wrong with your heart, your pulse or blood pressure, and you have other symptoms of Babesia listed here, I would suspect that the organism is in your heart. It could be Babesia or Lyme or any other coinfection. POTS (postural orthostatic hypotension) is very common with tick-borne infection. You can read my article on POTS here. Physicians classically treat these symptoms with various pharmaceuticals which might mask the symptoms for a while. Key word “for awhile.” You see, the medications which normalize heart rhythm only go so far; they are not going to be effective for very long because the pathogens are still residing in your heart tissue and as long as they inhabit you, they will mess with your vitals.

Air hunger. This symptom is easily the most terrifying when it is severe. It feels like you are suffocating or like someone is crushing your diaphragm. It is easily misdiagnosed as a “panic attack” yet it will not respond to anxiolytics. It’s also frequently (and incorrectly) diagnosed as “asthma” or “shortness of breath” or some other lung disorder but it never responds to albuterol, inhaled corticosteroids, allergy medicine or other inhalers. In fact, these medications might make the situation worse.

The sensation of air hunger varies from person to person, and even in one individual, it can vary during the day. When it flares, it feels like you can’t get enough air in,  like you can’t take a satisfying deep breath or maybe you just have to think about breathing.  Sometimes it shows up as a ‘yawning attack’ and sometimes it’s downright terrifying and feels like there’s a pillow on your face and gasping occurs. Sam has had this symptom and I always feel helpless. It’s utterly terrifying. There’s little you can do except hold the person’s hand, try to sound positive and soothing even if you have to pretend (and pray really hard). IMG_6964

During an emergency such as this, you would think that an Emergency Room could help, however, with Babesia-induced air hunger (if it’s really that) there is nothing they can do, your oxygenation is normal, and so are your blood gases.  The last time we went to the ER, the doctor sent Sam home and said don’t worry about it, “you’re not going to die tonight” all your labs are perfectly normal. You will leave the ER virtually breathless with a chart that reads “nothing remarkable.”  Air hunger is frequently misdiagnosed as a “panic attack” because it feels like your suffocating, which makes you panic. Please be assured, it is not a true panic attack, and it should be treated differently (with anti-parasitics) not with psychiatric medications or asthma inhalers which don’t help.

Déjà vu. That’s a French word for “already seen” and it’s a bizarre symptom of a Babesia infection.  It’s pretty hallmark actually.  Déjà vu is the feeling or sensation that you have previously experienced an event, or a person but in reality it is being encountered for the first time. Another way this manifests is hard to explain but I’ll try. You might get visions or scenes from the past that fall out of your brain without provocation. For example, you are doing something (let’s say you’re doing dishes) and all of a sudden your thoughts are interrupted by a random scene when you were 12 for example, eating macaroni at your friend’s house (something you would NEVER have thought of in a million years), yet this random thought flashes before your eyes. They are sudden random, completely out of context visions of your life before today.

Insomnia. It manifests different ways for different people but the end result is the same, unrefreshing sleep. It is usually the inability to fall asleep at a decent hour combined with fitful sleeping. You might get a few hours of sleep, but it isn’t restful. Some of you may have strange dreams. When you close your eyes, you may see flashing lights, what is termed “visual snow.” The key here, is that prior to the Babesiosis infection, you slept pretty well, like a baby! After infection, deep, restorative sleep is pretty much impossible. Honestly, sleep deprivation is common with Lyme and all the coinfections.

Interstitial Cystitis.  It feels uncomfortable down there, in your urethra or bladder, and doesn’t respond to antibiotics. This is usually a symptom of Bartonella or Borrelia (not so much Babesia) but it will often flare if you take antibiotics and it’s common. I want you to be aware of this if you live on medicine for urinary tract infections (UTIs), maybe it’s not a UTI, maybe it’s Lyme or Bartonella. If you would like to read my article on Bartonella, click here.

Here are other signs and symptoms of babesia infection (can be Babesia microti or Babesia WA-1 or other Babesia species)
Screen Shot 2015-05-27 at 11.50.41 PM

Lyme and Clan


Babesia is contracted from bug bites, usually ticks. Babesia is a coinfection of Lyme, it is injected into you by the same tick which could transmit various other pathogens what I call “the clan.” Since there’s much confusion about tick-borne disease, I’ll list some (not all) of the pathogens and the names of their respective diseases here, keep in mind there are various different species under each pathogen name. Here’s Lyme and clan!

Organisms

Ticks are by a mile the fastest way to catch Lyme and clan. 
By that I mean Lyme disease and all these coinfections (which again, often infect you with one bite).  You may think you’re immune to Lyme because you don’t hike into the woods. But you don’t have to. You can go golfing or riding your four-wheeler. Or mountain biking, or walking your dog around the park. For that matter, you can get a tick bite in your living room, or in your very own bed. Most people never know they get bit, nor do they ever see a tick. They just know their health went from great to horrible, and don’t know why.

The lucky people know right where they were when the tick attached and when I say “lucky” I mean they know they got a tick bite and can therefore, get treatment immediately, rather than bounce from doctor to doctor for many years without knowing.  Ticks are often carried into your home by your pet cat or dog, and they can get on you. In fact, ticks prefer you because you are not wearing a tick or flea collar, nor have you been sprayed like your dear pets. Pets are the most obvious transport system of ticks, that’s how the critters hitch a ride into your home, then onto you. They numb your skin, so you don’t feel them attach.

And You Thought Lyme Was Bad!

Lyme disease is caused by the organism known as Borrelia burgdorferi.  This organism is named after the American scientist that discovered it Wilhelm “Willy” Burgdorferi (June 27, 1925 – November 17, 2014). Lyme is bad, for sure. I would never discount Lyme, or any of its symptoms.
Babesia is wicked though.

Did you read those symptoms above on Babesia, and get a little mad or frustrated because you’ve experienced these symptoms for years yourself and none of your physicians have picked it up?!

Because I’ve been right where you are, and I’ve been equally mad to watch the one I love suffer, I’ve made it my mission to tell the world about Lyme and it’s bad ‘brother’ Babesia! 

The tests for Babesia rarely identify it. Seriously, tick borne testing is still pre-historic. Do you know that some physicians (probably most of them) don’t even believe in chronic Lyme, no less Babesia! If you have time, click here to read my article on Lyme disease on Huffington Post.

Most tests look for a shadow of these organisms, and how your immune system reacts; some tests can identify a few species but if you don’t have the one being tested, you will be dismissed. Because the species aren’t all detectable, a diagnosis has to be made on your history or what we call your “clinical presentation.”

Ask yourself the following questions:
Do you have any pets?
Do you go on picnics or camping trips?
Do you spend time outdoors, in the grass (cut lawns, do construction or other)?
Have you ever been bit by a biting fly or tick?

One patient I know says he knows exactly when he caught Lyme, he was in the dining room at his friend’s house and the tick from their pet dog crawled on him and attached.  Seeing that happen is rather remarkable, most people never notice the tick, nor feel the bite since the tick numbs you first. And about half of you never get the  famous bulls-eye rash. A myth is that you have to develop a bulls-eye rash (or any rash) in order to have Lyme disease but I’m telling you that’s bad information.  You may never see a rash after the tick bite.

I’m just having a conversation with you, my friends, but if I were a doctor, I would suspect Babesia if you had several hallmark symptoms, even if your blood tests were negative. I would at least try some immune boosters or natural remedies to try to get a better quality of life (even if my test was normal, but my symptoms looked like Babesia). 

I don’t know of a way to completely eradicate this organism, it is truly stealth … but I can tell you this: It’s easier to add quality to your life if you know you have it! Right?

Think about it, if you don’t know you have it, you keep getting medications for symptoms and you never actually treat your infection. This leaves you with all your symptoms, and side effects (side effects = the politically correct term for drug-induced symptoms), and even more symptoms from the drug mugging effect of all your medications! Most of all, an incorrect diagnosis leaves you feeling frustrated and financially depleted because you are not getting better and your symptoms keep spinning.

People start to question if it’s in your head. Why? Because you look good! Most people with Lyme and coinfections including Babesia still look beautiful and normal, including my colleague who turn heads when she walks into a room.   You simply cannot see Lyme on someone’s face unless they are undergoing intense treatments and herxing, then of course, they may look rough.

 Case example of this, Yolanda Foster who is very pretty, she is from the Real Housewives reality show, and travels the world with her husband David Foster seeking treatment. She has become one of the most well-known faces of Lyme and openly shares her journey. Lately, her photos make her look drawn, tired and weak. Desperation can drive you to many treatments … stem cells, ozone, antibiotics and more, but I have to tell you with Lyme, more is not necessarily better. Yolanda has chosen a variety of treatments for Lyme in the hopes of getting better but so far, none have cured her for she continues the search. If I could have a conversation with Yolanda, I would explain to her that some treatments, while effective for some people, can be detrimental to others, especially the oxidative treatments. For example, ozone is a popular oxidative treatment but if you have a certain genetic polymorphism (termed a SNP) ozone can backfire and cause more damage after the treatment, which is the last thing any Lymie can afford. Please take some time to read what could be a life changing article which I wrote recently, Genes, Methylation and Your Health.  The worst part is that when ozone backfires and makes you feel super sick for months on end, it is blamed on a herx. I have my own perspective which I will gladly discuss in a future article. Lyme treatment should be individualized and I will discuss this SNP as well as the pros and cons of various herbal and pharmaceutical treatments in Part 2 of my article, which is not posted yet.

It is scary to think about having Babesia or Lyme, so if you are reading this and getting nervous I totally understand. But worse than being misdiagnosed for many years, the medications prescribed for all your symptoms will hurt your body. They will likely harm your liver, your gut or kidneys. You will be sadly dismissed with all sorts of diseases you don’t have if you treat each symptom of Babesia, rather than treating the parasite itself.

I want to elaborate on this now, because I think it’s the BEST PART of my article. Reading this might help you realize that you should dig deeper:

* 
If you’re diagnosed with “menopause” or “hot flashes” you are given hormones which will never fix the sweats associated with Babesia. Ever.

* If you’re diagnosed with “asthma” or “bronchitis” instead of air hunger, you will be prescribed albuterol and it won’t help. If this symptom progresses, it could get very difficult to breathe. Fatalities do occur.

* 

If you’re diagnosed with “insomnia” you are prescribed a sleep drug and most are addictive and they don’t usually work in Babesia infections. More often than not, you take them and still don’t sleep, you just feel like a zombie wide-eyed ’til the sun rises. Sleep deprivation in this case is best relieved by reducing parasite load and cytokines.

* If you’re diagnosed with cardiac arrhythmias of any sort, a racy heart or heart palpitations, you’ll be given a ‘Lazy Susan’ of drugs none of which normalize your heart rhythm. You have to get Babesia out of the heart muscle! Pacemakers don’t cure the infection either, it progresses while your heart is forced into rhythm temporarily.

* 

If you’re diagnosed with migraines, you’ll be given various drugs like the triptans (think Imitrex and Zomig), as well as calcium channel blockers, anti-seizure drugs, opiates (hydrocodone) or anti-nausea suppositories/pills.  These are temporarily effective, however if your head pain is driven by Lyme or Babesia (or other coinfections), those drugs don’t work, just like I explained in my best-selling book on the topic Headache Free. The drugs will help to some degree, but the pain continues, perhaps with less frequency.



If you tell your physician you sometimes feel depression, brain fog or anxiety, count on getting a prescription for a benzodiazepine, am I right?

Or count on getting diagnosed with fibromyalgia, chronic fatigue syndrome or “chronic stress” am I right? Count on getting a prescription for a medication BEFORE you get tested for nutrient deficiencies,  autoimmune thyroiditis (Hashimoto’s), intestinal overgrowth of yeast or other pathogens, SIBO or Lyme and coinfections. Count on it.

It’s very unusual for those 3 symptoms (depression, brain fog or anxiety) to be seriously associated with anything other than a psychiatric disorder. God forbid you mention that you feel “drunk” even though you don’t drink and it’s a slam dunk for anti-psychotic medications.

See my point yet. You can treat symptoms palliatively all you want (or until you run out of money and tax your family from the stress of this), or you can treat the underlying pathogen.

Reducing parasitic load is the key to getting your life back.

In my sequel article to this, I will outline natural and pharmaceutical antimicrobials to help reduce parasitic load. My sequel article will be sent to your email address via my free newsletter (sign up on the right).

Also, leave your comments below in my forum, please keep them short and general. I am not a doctor so I can’t answer your specific health questions or treat you. If something worked for you, please share that for the benefit of others, that way people can ask their own doctor about it.

Resources
I wrote an article on Huffington Post called “Feel Bad? It’s Lyme Unless Proven Otherwise” click here to read.

USE MY SEARCH BOX (upper right) to search for my other articles on Lyme, Bartonella and coinfections.

Headache Free: Relieve Migraines, Tension, Cluster, Menopause and Lyme Headaches by Suzy Cohen, RPh (yes, me!) and I wrote a chapter devoted specifically to this kind of head pain.

The Diagnosis and Treatment of Babesia by Dr. James Schaller

Checklists for Bartonella, Babesia and Lyme by James Schaller M.D. and Kimberly Mountjoy M.S.

Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease by Richard Horowitz, MD

Website for Dr. Marty Ross, his practice is in Seattle and he has lots of information and ebooks/videos and “conversations” at his site.

Website for Dr. David Jernigan to Hansa Center in Wichita, Kansas. Dr. Jernigan is the author of Beating Lyme Disease, Living the Good Life in Spite of Lyme, 2nd Edition.

Herbal Antibiotics, Natural Alternatives for Treating Drug-Resistant Bacteria by Stephen Harrod Buhner.

Herbal Antivirals, Natural Remedies for Emerging and Drug-Resistant Viral Infections by Stephen Harrod Buhner.

Out of the Woods:Healing Lyme Disease – Body, Mind and Spirit by Katina Makris

Gone in a Heartbeat, A Physicians Search for True Healing by Dr. Neil Spector

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2015-05-29T21:09:13+00:00

250 Comments

  1. Scott Forsgren May 29, 2015 at 10:05 pm - Reply

    Hi Suzy, can you elaborate on which genetic SNPs might lead to ozone being a problem in some people? Thanks and best to you!
    http://betterhealthguy.com/

    • Suzy Cohen May 29, 2015 at 10:54 pm - Reply

      Hi Scott
      Hope you are doing well. I will identify this and elaborate in the sequel article in 2 weeks. I don’t want to begin that trail here because it opens a bigger discussion which should fall under my sequel article on treatments.

  2. Diana S. May 29, 2015 at 10:17 pm - Reply

    Dr. Cohen –
    I have pretty much all the symptoms you list here for babesia. I have had two test by Igenex for Lyme disease. The first one I took to a local LLMD (not highly regarded) and he said, yes, you have Lyme disease. The second one was done by a local LLMD (very highly regarded) who said, no, you don’t have Lyme disease. I never got a copy of the results.

    I don’t know what to do now? Any suggestions?

    Thanks.

    • Suzy Cohen May 29, 2015 at 10:52 pm - Reply

      Get a copy of each test. See if you have 5 bands +/+ that are the suspected ones, indicated on the Igenex test. You can search my other Lyme articles using my search box to see the band numbers. If you have symptoms (regardless of test), perhaps some gentle antimicrobials and cytokine removers would help.

  3. Sharon May 29, 2015 at 10:38 pm - Reply

    God Forbid you end up having a psychotic episode due to the conflict and trauma in your family when one parent believes the naive allopathic doctors and the other parent has already journeyed through chronic Lyme and understands its complexities. It’s bad enough when half the medical world doesn’t believe your Lyme and babesia diagnosis, but really, to have a parent abandon you, too?

    So you end up with this unresolved emotional trauma from feeling unsupported by not only half the medical world but also one of your parents. So of course once you have a psychotic episode due to the infections, your heavy metals toxicity, your adrenal insufficiency and now this unresolved trauma. Then you’re immediately placed on anti-psychotics, even though there is absolutely no scientific evidence that these drugs help alleviate or prevent psychosis.

    And you have major CYP450 pathway SNPs which make you a poor responder, so pretty much, you have just been chemically lobotomized. Then the psychiatrist leaves you on that high dose of anti-psychotic for months because he wants to “prevent another psychotic episode”. What happened to the prior Lyme and babesia diagnoses?

    Once you get into the Psychiatric Regime, these real causes of your symptoms (e.g. the true diagnoses) aren’t even considered. It’s just a game now of how long can you be the annuity for the diagnosing psychiatrist. And when your anti-psychotic causes you to develop OCD, the psychiatrist will give you another psych med, this time an SSRI, to help with that new-onset OCD caused by the anti-psychotic. And then when you have a seizure (because after all, you had SNPs which indicated that you couldn’t even tolerate one normal dose psych medication let alone two), then the psychiatrist will add an anti-seizure medication. Might as well just go into the nursing home at age 24. Yup, you now have zero quality of life.

    You used to be bright and fit and headed to college. After the psychiatrists got a hold of you, your only goal is a need to escape out of their system. This is not a hypothetical description. This is a description of a member of my family who has been trapped in this psychiatric regime for 5 years, and our probate courts and one parent are helping to maintain this young man’s predicament. So my advice to you is to do your own research. Follow the functional medical doctors (like Suzy Cohen!). Know your gene scores. Trust your gut. Ask for spiritual guidance. Follow the Four Agreements.
    And most importantly, follow the Fifth Agreement, which says “Listen. But Be Skeptical.”

  4. Jennifer May 29, 2015 at 10:42 pm - Reply

    Thank you for writing this blog about Babesia! This information needs to get out there. It is near to my heart as well. My daughter has been treated for persistent Lyme and just recently diagnosed with Babesia as well. She had all the hallmark symptoms you describe. She is now being treated for it and finally starting to see some improvement. I believe it is only because I have had chronic Lyme myself that we even were able to diagnose it after she was sick for less than a year. I can only imagine the number of people with undiagnosed Babesia.

  5. Deborah Barton May 29, 2015 at 10:43 pm - Reply

    Last summer I finally diagnosed myself with Lyme disease. Thank you for this post. I appreciate your passion for educating and helping others with Lyme and associated co-infections. Your husband is a blessed man to have you on his side!

  6. Lyn May 29, 2015 at 10:45 pm - Reply

    Very interesting article. Thank you!
    Is there a test available to see if you have this?

    I had a tick last spring, not a deer tick though.
    I will spare the details of all that I have been through this past year,
    but it’s been a very challenging year. I had the Lyme test called
    LYME SCREEN W/REFLEX WEST BLOT and it was negative.
    I have been chasing an answer to my symptoms (many similar
    to those listed above) for months.
    What do you recommend for testing, or asking my doctor about?
    Thank you~
    Lyn

  7. Linda johnson May 29, 2015 at 10:47 pm - Reply

    You did a great job of explaining a tricky disease, giving hope when I needed it, and enough information, for now, for me to start standing up for myself.
    Looking forward to part 2.
    Your original article on Lyme disease was very helpful too. I love that you do all this careful research for us. We’d be floundering without your drive to help.

    • Suzy Cohen May 29, 2015 at 11:19 pm - Reply

      Thank you Linda, a lot of time and love went into this article. It was supposed to be 500 words, and it ended up being 7000 words total, so I broke it up into two parts, the next one coming soon, probably 2 weeks when I’m done with it 🙂

  8. eileen May 29, 2015 at 10:52 pm - Reply

    Very interested in what you recommend re: treatment with EO’s.

  9. Jean May 29, 2015 at 11:02 pm - Reply

    What do you think of the Lyme test at Igenex Lab? Is it better than the “usual” tests?

    • Suzy Cohen May 29, 2015 at 11:04 pm - Reply

      Yes, by a mile! Did you use the search box on my site to read my comments on Igenex? You can just put that term in the search box.

  10. Kandy May 29, 2015 at 11:16 pm - Reply

    Hi Everyone,
    I nearly lost my life due to Lyme and many co-infections over 2 years ago. I have been reinfected 2x likely by mosquitos and I want to share with everyone that there is an answer to getting rid of Lyme and ALL co-infections. I purchased and used a True Rife Machine and completely eliminated my Lyme twice and working on the 3rd time now. I want to shout it from the roof tops because so few know about or understand this technology, but it’s out there and will heal you! Please share with every Lyme sufferer you know. Enough of this needless suffering.
    Much Love,
    Kandy

    • Suzy Cohen May 29, 2015 at 11:18 pm - Reply

      Kandy that is so kind of you. There are many brands, which brand to you think is the best one. What frequencies did you use (if it’s not too much trouble). If you have a blog where you have shared all of this, post the site. Thanks.

    • Elisabeth May 30, 2015 at 12:15 am - Reply

      Kandy: I saw the book Lyme Disease and Rife Machines on a major online retail website, and it had 67 five-star reviews. I bought it, but have not read it completely. I am buoyed by your testimony. I have Lyme and am on day 75 of treatment with the Cowden Protocol (herbs.) I’m exploring all options of treatment, but the cost of the Rife machines seem prohibitive, so I’m cautious to jump in and try the Rife machine.

    • Adrienne May 30, 2015 at 1:17 am - Reply

      Hi Kandy. Thanks for sharing this. I am glad to hear this helped you- however, I have heard that mosquitos don’t transmit Lyme – do you know for a fact that it was the mosquitos?

      Thanks,
      Adrienne

  11. Kathleen McCormick May 29, 2015 at 11:19 pm - Reply

    Excellent synopsis regarding babesia and other tick-borne diseases. Your breadth of knowledge continues to amaze me!

    I myself had to go on a long journey to find out what was wrong with me. And then I encountered the political nature of the lyme disease controversy. The medical establishment is in denial about how prevalent tick-borne disease is. Many people are misdiagnosed and treated with medications that just make them worse.

    The only good thing about tick-borne disease is that it makes you into an advocate and an expert on health issues. The way to get well is to take back the responsibility for your health and to study up on what works.

    Low dose Naltrexone [LDN] has been a tremendous help to me in the long run.

    I’m so sorry your husband is contending with this. All my best for his continued improvement!

    Kathleen

    • Suzy Cohen May 29, 2015 at 11:42 pm - Reply

      Thanks Kathleen, you are very sweet. I do agree, our life and our health is in our own hands and having brilliant functional medicine doctors and naturopaths to weigh in can make a big difference. I think pharmaceuticals play a role, but it’s not everything like some LLMDs think. They are quick to want to stick a picc line in you! Lucky, Sam never agreed to that one.
      He’s doing good for him, we have a lot of fun together, but he never forgets, Lyme ‘runs’ in the background every day.
      http://suzycohen.com/articles/the-medicine-your-doctor-never-told-you-about-but-should-have/ my article on LDN.

  12. Chris May 29, 2015 at 11:24 pm - Reply

    How long is treatment? Months, years?

    • Suzy Cohen May 29, 2015 at 11:37 pm - Reply

      Hi Chris
      Just depends, honestly I’d say lifelong. There are physicians who say you only need to treat for 4 or perhaps 6 months to clear Babesia, but in my humble opinion, this only puts the symptoms into remission. They often come back after a few days (or months) of stopping treatment. That’s not a hard fast rule, that’s just my opinion. This organism is stealth. It can cycle and go away, and reappear at any time.

  13. Chris May 29, 2015 at 11:40 pm - Reply

    Also the bladder is babesia as it’s apart of POTS. I have Hyperadrenergic POTS which causes excessive urination.

    • Suzy Cohen May 29, 2015 at 11:48 pm - Reply

      Thank you for your insights Chris, and dysautonomia too.
      Good eye.

      • Chris May 29, 2015 at 11:59 pm - Reply

        It is a great article!

        POTS is a disabling condition and how a Parasitologist hasn’t found the link I will never know.

  14. Merle Ziporah Marcus May 29, 2015 at 11:46 pm - Reply

    Thanks for all this information! I always appreciate the facts you share, and have forwarded a few, hoping they will benefit.

  15. kara May 30, 2015 at 12:04 am - Reply

    What do you think of the i-spot test for lyme?

    • Suzy Cohen May 30, 2015 at 12:08 am - Reply

      I don’t think it’s that good at picking up long-term Lyme, but it’s a great test in the early months. Just my opinion, the makers of the test are a class act and will answer your questions readily. It showed Sam was negative (Igenex said positive) when he took both tests the same week (18 years into the illness). So if he relied on i-spot, he’d say he was negative and still be chasing his tail. I wrote very positive statements about i-spot (which I still hold to) in the back of my Headache Free. Regarding Igenex, while not 100% accurate in everyone might be better if you’ve been sick a long time.

  16. BlueRidge Mama May 30, 2015 at 12:15 am - Reply

    I am looking forward to part 2 of this series. Never had a bullseye rash, but have had plenty of tick bites over the 25+ years I’ve lived here in a rural community. I started having these bouts of chills and sweats with killer headaches in 2005. I would crawl under the covers and shiver myself to sleep, and wake up drenched, thinking I had broken the fever. The next day I felt better. This would happen about every six months. I noted, though, that my temperature never went up. I called it the feverless fever. Nobody else in the family was sick but me. Over the years I had air hunger, increasing fatigue, insomnia and other sleep issues (last year I dozed off at the wheel and rolled my SUV, and had no idea I was falling asleep!), fibromyalgia, balance issues, you name it.

    I was afraid I was bound for a wheelchair. Last summer my husband had a tick bite and the bullseye rash the very next day, and he started having the same chills and sweats that I had…with no appreciable rise in body temperature. Doing research on lyme, I realized he had what I had! Fortunately, he got on antibiotics right away so he’s had few issues since, but I notice he does get tired quickly now. For about four years I had hot feet and hands that were physically hot to the touch. This coincided with menopause, so I assumed I was getting a type of hot flash and just lived with it. Today I use Banderol [by Nutramedix] for the hot feet and it helps, but I feel like I am not really getting rid of this organism in my body, just keeping it at bay.
    I want to get WELL.

    • Suzy Cohen May 30, 2015 at 12:30 am - Reply

      Wow, what a story! Thank you for sharing this. You can absolutely get better, I believe in it. My article is intended to give people hope and new insight, rather than just one drug after another until you run out of money. The fact that you know what pathogens to treat now (thanks to the blessing of seeing it in your husband) will help you with treatment. What he does might help you too, possibly. Knowing your SNPs can be helpful in terms of choosing treatment. Have you done the 23 and me? Read my article here, this is very important: http://suzycohen.com/articles/snpsmethylation/

  17. Lois May 30, 2015 at 12:26 am - Reply

    What do you think of taking B 1 [thiamine] to keep bugs from biting you. When I was a kid we took B1 to keep those nasty flies from biting us. Think you have to take 500 mg three times a day as an adult.

    • Suzy Cohen May 30, 2015 at 3:43 am - Reply

      Hi Lois,
      I like thiamine but definitely not enough to keep a tick from biting you, or mosquito.
      People with Lyme and Babesia are almost always thiamine deficient.

  18. Michele May 30, 2015 at 12:38 am - Reply

    Hi Suzy,
    I’m sorry your husband and family have to deal with Babesia. I have struggled with it for eight years…the WA 1 flavor. It really hits my rib cage hard. I’ve always associated rib cage pain along with air hunger with Babesia.

    I look forward to your advice to treat it. I am now unable to work from this disease. Very sad. I had a great career as a college professor. This disease is knocking me out of my career 10 years early.

  19. Sarah May 30, 2015 at 12:42 am - Reply

    Thank you for writing this article! I have been so sick with Lyme and company that I ended up having heart surgery last year. I was doing so much better until a couple months ago. I’m now cycling with symptoms again. I started on Alinia and was feeling better and now have crashed yet again. The cycle is so frustrating. I can’t believe that we are living in a world where people are so sick and docs keep ignoring it and can’t we can’t get help. If I didn’t know better I would think we were living in some sci-if movie. I surely hope your next article gives some new insight. I’m looking forward to it!

  20. Melissa May 30, 2015 at 12:44 am - Reply

    This was such a wonderful article – I love that your stuff is so detailed yet so easy to understand (That is a real skill). I have learned so much from your articles and they have so often helped me to better support my clients – many of which have been diagnosed with chronic fatigue. Lyme disease is not recognized at all in Australia let alone Babesia but it is something I will bring into my awareness when working with clients with the above symptoms. Suzy do you or have you thought about providing practitioner training? If so would love to hear more.

  21. Pam Nicholson May 30, 2015 at 12:44 am - Reply

    Hi. You have just described my life story. I have been sick since the ‘summer flu’ in 2008. Still no diagnosis just treating symptoms with my doctors here. I will check out more of your information. I live in Alabama and understand must insurances here don’t cover treatment. Thank you for sharing this immense vast amount of resources. I feel like there may be hope

  22. jean gaida May 30, 2015 at 12:47 am - Reply

    I have the symptoms of lymes ,and babesia but the more I read the more I get down. They seem almost impossible to cure. Finding a Doctor that has the time and expertise to treat these diseases is difficult, yet the financial costs out of ones pocket for treatment. Insurance companies won’t pay for treatment. I’ve been sick for over five years and see no light at the end of the tunnel.
    I do thank you for caring about people with these diseases for they are devastating.

    Jean

    • Suzy Cohen May 30, 2015 at 3:31 am - Reply

      Truly I understand. I’ve watched Sam for 2 decades. I’ve been on the ride, just like you.

  23. Cynthia Barker Congdon May 30, 2015 at 12:58 am - Reply

    Brilliant piece, Suzy! You hit every point of Babesia, spot on. I just have a couple of comments that may be useful to some people. I’m being treated by a LLND who actually has Babesia himself, so explaining the symptoms was almost comical at times. Describing ‘creepy-crawlies’, when it feels like bugs are walking on you, is always a trip! When I was diagnosed, I was years past menopause and, like your friend, knew precisely what a hormonal hot flash feels like. There is no resemblance to a Babesia heat wave. My doctor explained something I had never heard, but continue to ponder. He said that hormonal hot flashes typically last 3 to 5 minutes, while Babesia ‘heat waves’ can last much longer. I’ve had a few that lasted hours, or a whole day! Stress seems to be an instant trigger for me. I describe my ‘heat’ as feeling like you’re standing in front of a 500 degree oven, except it’s coming from the inside out. Anyone who has experienced this will know exactly what that feels like.

    On air hunger – I see an acupuncturist once a week. She is Lyme-literate, if you can believe it, because she has acquired so many Lyme patients over the years, she decided she needed to understand Lyme and ‘the Clan’. What she does is an overall ‘inflammation cool-down’ which really helps. She also showed me a spot that gives instant relief to air hunger! If you put your finger on the lower part of the bone between your breasts, and move down to the bottom edge of that bone (right in the center), there is a spot that when pressed, gives instant relief. You’ll know when you’ve hit it because it really is quite amazing. It works every time!

    There is another way that people can be exposed to ticks in their own homes. Mice! Little brown mice with white bellies (nicknamed deer mice), are a primary vector used by ticks. You don’t have to have a dog or outdoor cat to get ticks, as most everyone has had a little visitor from time to time. Horrifying notion, but it helps to explain just how easily any and everyone can be exposed to tick-borne disease. Even couch potatoes!

    Lastly, my knowledge of Babesia has become extensive since being diagnosed. As mentioned above, even with brilliant Lyme (tick-borne disease doctors), we MUST be responsible for our own bodies and information is power. I was told that Babesia is also nicknamed “New England Malaria’ since the protozoan is similar to Malaria, and Malaria treatments are quite effective at containing Babesia. That said, like Malaria, Babesia is not really ‘curable’. It can go into a remission of sorts, but it is always lurking. One can go years or even decades without a flair up (once initially treated, of course), and a traumatic event of any kind can ‘wake it up’. Be it emotional stress or physical injury. When the beast returns, it is re-treated using the same medications. I have not yet found an herbal or natural remedy that helps at all with Babs, but have had pretty good success with the Malaria drugs. I say ‘pretty good’, because I have never quite beaten it back to remission, and that is likely related to the fact that we have, so far, been unsuccessful at treating the Lyme. I now know why, but will spare the details, or my response will be as long as your article! Best wishes for your husband’s recovery. Share the air-hunger trick with him! It is truly like magic!

    • Suzy Cohen May 30, 2015 at 3:41 am - Reply

      Cynthia it is so kind of you to take the time to share your story, and all the tips for relief. Thank you very much! It is okay to share more details, if you feel led. For every person who writes, there are probably 100 others just reading and taking it all in. Your xyphoid process trick sounds amazing, and definitely worth a try next flare up.
      You’ve been through a lot <3

  24. Loree Rudin May 30, 2015 at 1:05 am - Reply

    Hi Suzy, I have been real sick for 31 long years. I have been to a dozen doctors and I had a lyme test ordered by my doctor, but the test results were negative, or she said I don’t have it.
    I have every symptom that you have on the above list. All my joints hurt! I have fatigue. I was diagnosed with Chronic fatigue Syndrome several years ago, and put on an antidepessant.
    I am so tired of being tired and hurting. What is you advice?
    Thanks for caring, Loree Rudin

    • Suzy Cohen May 30, 2015 at 3:30 am - Reply

      Hi Loree,
      Please use my search box, and put in “Igenex” and put in “Lyme” and read those articles. There are better tests than the conventional one that 99.9% of doctors use.

  25. Suzann Zinn May 30, 2015 at 1:09 am - Reply

    I had an infection in my spine caused by lyme disease. I couldn’t walk, get out of bed, sit and couldn’t hold up my head. I had terrible back pain and no pain medications worked. After 6 weeks of this and terrible insomnia I got the bells palsy and then they did a spinal tap. I was admitted for 7 days but it took another 6 weeks to get mobile again. I am not myself yet but the doctors aren’t giving me much help. Have you ever heard of these symptoms?

    • Suzy Cohen May 30, 2015 at 3:29 am - Reply

      Yes have heard of this, you need to be treated somehow.

  26. Margie May 30, 2015 at 1:15 am - Reply

    Suzy,
    This was a great article and filled with your passion for helping us identify the unidentifiable. Not long ago I took a written Lyme test by one of the doctors on one of the Summits you were in, I can’t remember who he was right now, but my results were as positive as they could have gotten. I also have most of the symptoms you list above for both of the conditions. My Naturopath does not believe many people actually have Lyme and would not agree to any Lyme testing for me. He basically poo-poo’d the test. I am having a difficult time living my life and miss way too much work because of what is being called fibromyalgia and chronic fatigue. My diet is pristine and impeccable, so there is something else going on here. I am very much looking forward to the second part!

    • Suzy Cohen May 30, 2015 at 4:00 am - Reply

      If your practitioner had to live 5 minutes in your body, he would drop everything and call Igenex for the test!
      Why don’t you call them and order the kit, and it will be sent to your home. Then you can ask your ND to sign it, or find another MD to sign off on the requisition, that’s all you need is a signature on a piece of paper and you can take the kit to your local lab for a blood draw. To start, maybe you don’t need the thousand dollar panel, it’s not going to pick up all the species anyway, so maybe spend a couple of hundred dollars for these 2 tests for Lyme (this doesn’t test Babesia):
      188 IgM Western Blot
      189 IgG Western Blot

  27. Adrienne May 30, 2015 at 1:19 am - Reply

    How horrible, Suzy. I am so amazed at all of the stories about Lyme I am hearing. We are told to get outside b/c it is healthy, and yet it can lead to all of this.

    Do you have any tips for not getting Lyme? Besides not having a pet and staying inside all the time :)?

    Thanks much.

  28. Caroline May 30, 2015 at 1:37 am - Reply

    Thank you for the article! I was bitten by a tick that tested positive for Lyme when I was in my teens (now 31). We were bitten by ticks all the time growing up in CT and always had them tested. However, my doctor never tested me for Lyme. I had mono (and subsequently a severe c.diff infection) in 2009. Now I have candida, tons of food sensitivities and digestive issues, seriously low energy, etc…. I don’t have symptoms of Babesia (thank goodness) but have so many for Lyme.. all these years later, I wonder if I really did contract Lyme and this is why I’ve been unable to get healthy despite eating well and taking supplements. How do I know if I have it though? I hear that the tests are unreliable. And is it possible all the antibiotics I took for the c.diff killed the Lyme? Hmmm.

  29. Colleen May 30, 2015 at 1:48 am - Reply

    I was recently diagnosed with Babesia, I have had it at least 40 years! I do have some symptoms but not what I would consider classic symptoms based on all the articles I have.read. I do not have night sweats or day sweats, fevers, chills or coughing. I have had air hunger and headaches. I also have frequent pneumonia and bronchitis. In many cases the conditions develop without being preceded by a cold. I have thyroid and adrenal issues. I also have lots of pain in my spine and neck.

    I insisted on testing for co-infections even though my Dr. did not think I had any. The Babesia Microti came back at 320, any number over 40 is positive, this was thru IgeneX. This number is considered pretty high by my Lyme Specialist. I just want to share my experience because this can be so easily over looked when you do not have the predominant classic symptoms.

  30. Rebecca May 30, 2015 at 1:49 am - Reply

    Hi! Perfect timing for your article on Babesia. I have the HLA genotype for chronic Lyme. I have been dealing with it on and off since 2002. Just recently my doctor told me I had Babesia. I had a constant pressure on my chest. I also had a sensation like I had the beginning of asthma but I didn’t. It is hard to describe. Another symptom was tightness in my calf muscles. I thought I had early onset Parkinson’s. These are just few of the symptoms that I had. My doctor said that Babesia likes to hide out in the lining of the lungs and in connective tissue. Anyway my doctor prescribed Coartem.

    I guess Babesia is active during the full and new moon, so I have to take it before the full moon, the day of the full moon, and the following day. Then I’m suppose to take a break from it until the next full/new moon. I also take Crypto-Plus Microbial Balancer #2, Borrellia/Babesia Series therapy by DesBio.(Great Stuff). To help detox I use the Comprehensive Detox Protocol by DesBio. It’s a start. I’m told Babesia is a tough cookie to get rid of and after reading Byran Rosner Book: Freedom from Lyme Disease I have some additional weapons to choose from to fight back this evil Babe!!!! Have looked into Rife Machines, it’s very confusing to me. A reasonably price one I’m thinking of trying is the Royal Rife Ultimate Digital. Does anyone know anything about this model? Maybe someone will do a Lyme Summit. We need to get the word out about how devastating this disease is.

  31. Janice May 30, 2015 at 2:34 am - Reply

    At age 64, and being a person who camped and trekked through the Missouri woods since I was a wee child up through adulthood, I cannot even count the number of ticks that I’ve had embedded in my skin. I have vitiligo and Hashimoto’s, but I also experience a number of things on your list and have always wondered about the harm the ticks may have done.

    The worst things for me are the extreme drenching night sweats, insomnia, and profound fatigue. I also have Deja Vu, intermittent blurred vision, brain fog, tinnitus, light and sound sensitivity (sometimes extreme), mild depression or anxiety at times, sometimes extreme chill or sweat for no reason, occasional concentration difficulty, occasional short term memory loss. I mention all of this because I’ve attributed it to Hashimoto’s which I wasn’t able to get diagnosed until my late 40s and apparently suffered with since I was a child; however, when Lyme disease information began to surface, I have often wondered about all of those tick bites. I have no idea how to go about a diagnosis. I have one great thing going for me though, because I’m a health nut who eats organic, takes supplements, reads articles, and takes control of self-help and healing options. I write all of this to seek your opinion or suggestion.

    • Suzy Cohen May 30, 2015 at 3:46 am - Reply

      You have many symptoms of Babesia, so yes, I would do some online research and stay tuned to my newsletter, because I will send out more information in my sequel article (Part 2) coming up in June 2015.

      • Janice May 30, 2015 at 4:06 am - Reply

        Thank you. I’m researching and staying tuned in for Part 2.

  32. Vicki Barras May 30, 2015 at 3:40 am - Reply

    I have all the symptoms, Lym test poss for 41IgG but got bite when I was a kid had the rash was told ringworm. Migrains so bad that now I have frontal lobe deterioration. Doctors wont diagnose lyme and it has been a roller coast started end of 2008 damageing liver brain lungs bladder and most likly heart becase I have blood presure doops very low blue hands and feet for no reason. Been to so many doctors hospitals lost count. gave up.

    • Suzy Cohen May 30, 2015 at 3:56 am - Reply

      Vicki
      Please don’t give up. Lyme (and Babesia) is one of the most misunderstood diseases of our time, and it is a challenge to treat it but I can tell you first hand that no matter how long you’ve had it, there are ways to gently wake up your immune system, and gently reduce microbial load. The 41 band is associated with flagella of Borrelia (Lyme) or other organisms (not necessarily Lyme). Have they checked for POTS, did you read that article yet? The link is above, in my article.

      • Vicki Barras May 30, 2015 at 4:08 am - Reply

        I just paid for allergy testing and thyroid blood work said not hasimotos but have cronic virus. Alergic to soy and getting rid of soy has helpd doing gut repair now have diverticuloses. out of $ so have to wait . Ins wont approve anything and doctors wont run the test I ask for. whent to nateral docter but had to pay for all of it doing some what better.

  33. MK May 30, 2015 at 3:59 am - Reply

    Hello,
    Last summer, I took my 4 kids to a naturopath for Lyme and coinfection treatments. I am concerned that my daughter tested positive for Babesia (Igenex), but the hospital lab’s blood smear test (visual inspection under microscope) did not detect the organism…so, my daughter did not get treated for Babesia. At the time, the naturopath said that her body must have fought off the Babesia. The blood test was negative, and she didn’t have strong symptoms at the time. He could not treat.

    Now, however, every so often she has the eye-ache and air hunger. She has brain fog and sweats at night. At other times she is cold. We have spent all of our money treating Lyme, Anaplasma, and Bartonella. The kids are not allowed to play in the yard as they once did. She DOES have allergies, so I have been trying to convince myself that some of these symptoms were the allergies. Are there natural medicines like oregano oil or grapefruit seed extract that can be used on a daily basis to kill Babesia….or do I have to call the naturopath and start another round of testing and office visits? She has been extremely diligent about covering up and checking for ticks every day…so I don’t think this is a recent infection.
    Thanks.

    • Suzy Cohen May 30, 2015 at 4:08 am - Reply

      Lyme and clan will cause the bills to pile up and it’s extraordinarily hard to manage the chronic illness in your home, and the bills and all the family responsibilities. You are doing a GREAT job!
      Too bad, he chose not to treat, it sounds like classic Babesia symptoms.
      Babesia blood testing (even Fluorescent In-Situ Hybridization or “FISH” assays which require a blood sample) look for nucleic acids of 2 species only, Babesia duncani (now referred to as WA-1) and Babesia microti. There are about a dozen other species that CANNOT be tested for, so to me, a tick bite should be clinically correlated with the symptoms, despite the negative blood test (because again, we are unable to detect all the different pathogenic species from a blood sample).
      Yes, there are natural options but not grapefruit seed extract, or oregano oil (those are way better for fungus). I’ll share a few options in my sequel article (Part 2) so please stay tuned, I’m still writing that article and it will be ready in June and will come via my newsletter so you’ll get the link.

  34. Janice May 30, 2015 at 4:01 am - Reply

    Thank you so much for all that you do to help us to be informed and for directing us in how to seek answers and help. I just finished reading your Huffington Post article which supplies a lot of good information with regard to available tests. Your caring help changes lives.

  35. ds May 30, 2015 at 4:08 am - Reply

    Great article, cant wait to hear your recommendations. The reason it caught my eye, was we thought my dog had it. I was in central america and adopted a street dog and few years after we came back home he got terrible nosebleeds. Turns out he had elichia(sp), and a babesia treatment called imizol had off label treatment results for it. We had to get govt approval for it to be brought in and made him very sick after both injections, but he really turned the tide after that and a heavy course of anti and probiotics.

    Long story short, its been 7 years since then hes still going strong.

  36. Vicki Barras May 30, 2015 at 4:11 am - Reply

    what is POTS

  37. Vicki Barras May 30, 2015 at 4:34 am - Reply

    looked back at daily logs and talked to 3 deferent doctors about POTS in 2009 told no you dont have that told ranards, fibromialga , deperetion, menapose. migrains. Sorry for my spelling.

  38. Trisha May 30, 2015 at 6:48 am - Reply

    Suzy,

    KUDOS to you and all your fine work ~
    you are changing and touching lives!

    Back around 1989 I saw a woman with Lyme who was in her early ’40’s, and admittedly, as an RN myself – it scared the life out of me. Consequently, I have researched Lyme and have 3 friends in
    CT with it.

    I would LOVE to hear MORE about the Rife machines and their efficacy re: Lyme & clan! Are they effective? The first entry cited contraction via mosquitoes (?).

    Furthermore, WHY the emphasis by medicine on antibiotics – shouldn’t it rather be on effective anti-parasitics?
    This has always baffled me!

    I’ve have been through my own lifetime challenges from my hypothyroidism & more, but my heart truly does go out to anyone & everyone fighting this disease. I truly wish you strength and Blessings from above!

    • Suzy Cohen May 30, 2015 at 4:15 pm - Reply

      Thank you Trisha 🙂
      Yes, I’ve heard mosquitoes carry it, though we always associate them with West Nile.
      Rife machines? Many people use those. I had one and sold it because we could never pin down the exact frequency required. Perhaps others on the forum will talk more about Rifing.
      Yes, you’re right, anti-parasitics and anti-protozoals and anti-helminths… better than antivirals and antibiotics for malaria-like illness.

  39. Beverley May 30, 2015 at 6:50 am - Reply

    Hi Susy First I would like to say many thanks for the time and dedication that goes into your articles. If it wasnt for people such as yourself I probably wouldnt be here now. I have been on the Lyme and Babesia merry go round for more than 15 years now and there have been many periods during that time that I just wanted it all to end only thing that stopped me was I didnt know how to successfully go about it.

    I think it all started slowly for me with the fatigue slowly creeping up on me and the Drs all telling me I was doing too much and the sweats were menopause (if thats the case I am having the longest menopause ever). I did the rounds with specialists all tests ok so of course it was all in my head. I have been abused, dismissed and insulted all because I wanted answers and kept pushing for them to help me.

    I have been unable to work for more than 15 years and life is one big struggle I even had a Dr tell me if I cant afford to live in the city I should move to the country. Sometimes its all too hard but then I was diagnosed with fibromyalgia so I started seeing alternative practitioners and each time I saw a different one I would seem to pick up a bit then plateau then back down I would go again. Like everyone else I cant sleep, up and down all night, paralyzing fatigue during the day where I go into a coma like state and cant get off the bed, lasting anywhere from 30 mins to several hours and that as you know is only a couple of my symptoms and no body believes me.

    When I dont ring friends or go out to functions they think I dont care but physically and mentally I am energy starved. Finally approx 2 years ago had organic acids test showed mito not working, faulty mthfr (Thats the only one you can get tested in Australia), toxic levels of lead mercury etc, hormones non existant with estrogen too high so I was put on multiple supplements and I was trying to stay positive thinking now I will get better so off I went and did a degree but when I finished I collapsed.

    Told Dr I am now having popping sensations in my head (I read faulty mito can cause something like mini strokes) Dr tells me Im mad and dont need brain scan I say I do, he won. Eyesight deteriorating rapidly Im starting to get scared thinking I will end up in nursing home. Finally Dr agrees to brain scan just prior to Xmas 2014. I was right, scan shows I am losing brain cells so now hes worried and he sends me to have test for lyme and co infections (he is an alternative practitioner). In Australia we have one place in Sydney, Australian Biologics that does dna testing and I came back positive for lyme and Babesia.

    Wont go into all the drama re the results (however I did give him a copy of one of your articles on lyme) but he didnt know where to go from there and in Australia our Government and 99% of Drs absolutely refuse to believe that lyme is in Australia. To me that is criminal. So I went to TCM practitioner having acupuncture and drinking vile tasting herbs some for parasites and some to strengthen body. I think I am improving a bit and can even get in some days where I havent had to go to bed but I still cant do anything physical. I am at present having whole body hyperthermia wanted to go to Europe but couldnt afford it then found 2 places in Australia. I have had two sessions and will have another two next week but it is expensive, so what do you think Susy? Have you heard of others having it and it working? I was also thinking of ozone but cant get that in Australia either however after reading your article maybe I wasnt meant to have it. I am looking forward to part 2 of your article hopefully there is something else I can do as its all becoming just too hard. Thanks for listening, Bev

    • Suzy Cohen May 30, 2015 at 4:41 pm - Reply

      Hi Bev
      You MUST stay strong. There is something for you that will work. You’ve come this far! When you’ve been ill for a long time, then it takes a little more time to get well, they say give yourself one month to get well for every year you’ve been sick (not sure where I heard it) but if those herbs are helping you even a little bit, then go with that. It’s the pattern, you’re getting better (even if it’s a little bit), which is better than the pattern of declining. You’re true friends will know why there is ‘silence’ and will understand, or show up with food or flowers. The other ones who are mad for you not ringing them, they couldn’t possibly understand. Don’t worry about them for now. Focus on you, and be strong. You can do this. With Lyme, things change by the day, and there is a lot more discussion, we are sure to hit on something helpful for you and all the others reading here.

  40. Jan Johnson May 30, 2015 at 7:05 am - Reply

    I find this very interesting! My daughters and I pull off multiple ticks daily here except for 2-3 coldest months of winter here in GA. I had a tick bite with large splotchy red rash but not bullseye and I had no insurance so I prayed it was nothing but some kind of allergic reaction. I had one a few weeks ago with large purplish swollen rash on the upper inner thigh.

    Three years ago I suddenly began having palpitations, then hours and hours of irregular heartbeat with chest pain and shortness of breath and almost passing out. I was diagnosed at the hospital with atrial fibrillation. I have never drank or smoked in my life, used decaf tea and coffee. I got sicker and sicker with it. DFCS finally let me on Medicaid and they found out a beta blocker I was taking was causing my heart to pause for up to 6 seconds at a time very frequently. They stopped that and I had been so much better, calm and quiet Afib, but suddenly a few weeks ago it just started up again horrifically. I can’t even leave the house I am so dizzy and gasping for air much of the time.

    I have many of the other symptoms you mentioned too – multiple hot flashes, sweats, horrible headaches with a huge amount of pressure and pulsations but not the same all the time – across the front, sometimes in the back at the bottom of my skull. Anxiety, depression that I fight like a tiger as I am a single adoptive mom and I have to be strong for my kids. Now I wonder if I have this babesia.

    Sadly, Medicaid will never provide what I need to find out. I have not been able to keep a job as I have so much brain fog I can’t focus or retain what I am learning. Kids are in rags. I’ve applied for disability finally after three years of fighting but they probably will not let me on as I don’t have enough medical records.

    I am glad to know about this and so appreciate the information. Maybe there will be something I can do someday about it and get some relief. I sure would like to know if it can cause atrial fibrillation, not just palpitations.

    • Suzy Cohen May 30, 2015 at 4:33 pm - Reply

      Sorry to hear this Jan, you sound like a wonderful woman.
      Yes, it can – both Babesia and Borrelia can show up with atrial fibrillation and acute respiratory distress. Antibiotics should be covered under Medicaid (in their generic form).

  41. Elaine May 30, 2015 at 11:24 am - Reply

    After losing a kidney to cancer (and the babesia exploding and finally showing itself in no uncertain terms), I didn’t think I could afford to do the Western Medicine route. The side effects would just be too severe on my surviving kidney. My PCP told me there was nothing they could do for me anyway, because after 2 weeks of treatments, my tests came back negative … I was cured. (eye roll)

    I turned to Chinese medicine (acupuncture, herbal therapy, food therapy). In a year’s time, I went from one foot in the grave, a zombie like existence, to functioning at about 85% It’s not cheap, and insurance doesn’t cover any of it, but it’s effective and gave me my life back. Also, I tried Cat’s Claw first, and it did wonders for the pain, but took about 2 weeks to kick in.

    • Suzy Cohen May 30, 2015 at 4:10 pm - Reply

      Hi Elaine
      I’m so happy for you, to reach 85% functionality!!! Could you share a little more about what herbal therapy and food therapy changes you made? I’m sure others are curious. Cat’s claw! Love that one, did you use Samento or some other brand?

  42. Dori May 30, 2015 at 12:08 pm - Reply

    Great article Suzy! I had lyme and clan and was treated for 2 years and told last fall I was clean. My question, which I can’t seem to find an answer to on Dr Google, is this: I have gotten 3 more tick bites this spring( live in the Georgia woods), and am wondering if these bites can reactivate lyme in remission, even if the ticks did not harbor lyme? Kind of like a molecular mimicry thing with foods?
    Would also love to see an article on how to keep lyme in remission.
    Thank you!!!!

    • Suzy Cohen May 30, 2015 at 4:09 pm - Reply

      Hi Dori
      If the ticks didn’t harbor Lyme then no reactivation should occur.

  43. Melissa Bannister May 30, 2015 at 1:26 pm - Reply

    Please send me the sequel. Thank you very much!

  44. Gudrun Marteinsdottir May 30, 2015 at 2:00 pm - Reply

    I am tracking a group that is using fenbendazol and reishi to deal with lyme, morgellos, and coinfections. This drug is also being used in research on cancer. It affects the FtsZ protein that is necessary for cell division in prokaryotes.

    I is worth checking out. you can find this group on facebook

    https://www.facebook.com/groups/stevesimages/

  45. Leslie May 30, 2015 at 2:13 pm - Reply

    Very informative Suzy, Thank you. I have been dxd with Lyme Babs, and Bart. Do you know how you would distinguish symptoms of Babesia (air hunger, sweats, insomnia, headache, and pain) from those that get a response from any moon activity? There is a full one coming up on the 2nd.

    Thanks,
    Leslie

  46. Sheila Eckel May 30, 2015 at 2:53 pm - Reply

    Hello Suzy- thank you for such a well written piece on Babesia, I posted it on our facebook page for lyme in our community in the SF area (and of course anyone else to read)
    https://www.facebook.com/groups/387749404743104/
    I have two sons in their twenties both with lyme, the youngest has babesia, he has been seeing a LLD in Redwood City.
    Thanks again for spelling this out so clearly (if there is any clarity to lyme and co-infections???)
    Sheila

    • Suzy Cohen May 30, 2015 at 4:26 pm - Reply

      Thanks for what you’re doing for the Lyme community! I wish you well with this project and with your sons, I can’t even imagine both of them. You are a good mom, they are lucky to have you.

  47. Lu Van Olst May 30, 2015 at 3:54 pm - Reply

    I am a retired pharmacist; a graduate of the U. Of Iowa College of Pharmacy in 1951. I lived in Mississippi on a golf course for 28 years and in the late 70’s I had the typical dark pink center rash and a huge light pink rash around the dark center. My doctor put me on 2 months of
    Vibramycin. In the last 5 years I have a total knee replacement on both knees but now have severe pain in both knees not related to the surgery. Prior to that but after the Lyme disease I have “gout” in the big toes, the air hunger so bad that I fly out to bed and run outside to breath, some pressure headaches in the left back of my head, the burning sensation on the bottom of my feet and other similar complaints that you mention. Even my veterinarian said my black lab. had Lyme. Where do I start on suggested diagnosis and treatment. I certainly want your 2nd. article. Many that’s for your concern.

    • Suzy Cohen May 30, 2015 at 4:21 pm - Reply

      ILADS.org
      Igenex.com
      Find a good LLMD
      Buy some of the books I mentioned in my article too.

  48. Pat Tall May 30, 2015 at 4:25 pm - Reply

    Suzy. Your upcoming article is going to be the most anticipated one ever in the Lyme world. We are anxiously awaiting it. We need your kind wisdom and help with solutions to this bad disease. Everything you have written has been devoured but this upcoming one will blow the servers. My printer will be waiting. Thanks (Babesia watch out– we are coming for you!)

  49. Lynda May 30, 2015 at 4:54 pm - Reply

    I recently saw National Geographic documentary on Lyme Disease that showed that the tick caries spirochetes that invade the body and cause havoc that most doctors are not trained to identify. It also demonstrated that out of 10 brain cell tests on the preserved brains of Alzheimers patients 7 of the 10 had spirochetes.
    The sad thing is that the medical profession chooses to close their eyes to testing for this.
    Is Babesia the spirochete?

    • Suzy Cohen May 30, 2015 at 7:33 pm - Reply

      Thanks Lynda, I have not seen that yet. The spirochete is Borrelia burgdorferi (not Babesia).

  50. Gail Hellwarth May 30, 2015 at 4:54 pm - Reply

    Thank you for your informative articles. Why don’t doctors investigate all these findings? We believe I originally got Lyme ineutro and then was reinfected many times during my life. I know of five times during my years on a farm in PA. I went years without a diagnosis. Finally got positive tests, (Igenex) for Lyme, Babesia, and Bartonella.

    Although I have had years of different treatments, I still remain sick. Some days I can function, but just minimally. I have many upper respitory infections, extreme fatigue, joint pain, IBS symptoms…and SWEATS like nothing I have ever seen.

    I live in south Florida so the heat bothers me so much I cannot stand to do much at all. The sun is like a blow torch to me. No LLD will see me as I only have medicare. No money for that…as I was rendered disabled and unable to work since 1990. I also have goiters on my thyroid, but drs say my thyroid blood tests are negative and don’t treat my thyroid. I believe I have auttoimmune problems, and have had all my life. I also have diabetes 2, and high blood pressure that is presently out of control. I am so exhausted that getting up to make is sandwich is overwhelming. I somehow believe this is all connected. Do you have any recommendations for me, I feel like I have given up. I have sweet grandchilren now, and would like to live to see them grow up a bit. Please send help!!!
    Thanks so much,
    Gail

  51. Jean May 30, 2015 at 5:12 pm - Reply

    Hi Suzy,

    Thanks – I’ve been waiting for you to get to babesia. I’ve had Lyme complex for 13 years, from 2 tick bites – no medical help despite 5 or 6 tests, and we ran out of money. For 12 years I’ve been at the health food stores and online almost every day.Very difficult health path, with heart disease and a 4X bypass.

    These are the herbs that consistently have helped me regain some measure of living.

    Olive leaf – whole leaves, and I grind it myself, or you can use the extract. This cleared up my garbled speech very fast. It’s also ant-malarial, so may help with babesia.

    Japanese knotweed seems to have a broad-spectrum effect.

    Chaga mushroom/oregano oil tincture gives me a little energy.

    I take a lot of others but with those I saw significant help.

    I also use a number of essential oils and many are good. People need to do their research with the different companies as some have compiled excellent information from the world’s best aromatherapists. Essential oil blends, followed by a comfrey-based salve, eliminate the pain in my knees (and probably there is some systemic effect as well.)

    Cannot use any amount of cat’s claw (Samento) at all – totally wipes me out, which probably means it’s working, but I can’t be wiped out all the time.

    My diet is very, very low-allergenic. I avoid ALL moldy environments – homes, churches, antique stores, etc.

    Hope some of these suggestions help your readers who are simply trying to regain some normalcy even if they may never regain their health.

    Thanks for your work, and I hope the next decade or so brings some ground-breaking discoveries for all of us.

  52. karen May 30, 2015 at 6:21 pm - Reply

    Suzy you are the best!!
    I’ve written to you before but it was about my daughter and finally getting diagnosed with Lyme after 4 years. What a roller coaster ride it has been for the both of us! Since that time I have found that I West Nile, bitten by a mosquito in CO and it’s just like Lyme. My daughter is being treated by a llmd using antibiotics & supplements and I’m using a natural protocol following as closely as possible to hers and using natural antibiotics.

    I’m writing because your article hit the head on my symptoms which I figured was babesia & Lyme. The lists for Lyme & co-infections are really of no help to the basic person, everything they list sounds the same for each and every infection. So you finally listing Babesia symptoms is a huge help. Sweats initially I thought were due to going through menopause because no where in the symptom list did it list sweats but I finally figured out babesia and you’ve written it out and it’s great! I’m looking forward to your how to upcoming article.

    As you have so expertly hit the head on the nail, so sorry it took Sam and you to have been the patients! Thank you so much for using your knowledge and your past and present happenings, it makes it easier in trying to fix ourselves! Looking forward to the next article. By the way your Thyroid Supplements [ThyroScript] and Vitamin B complex are great!

  53. Mary May 30, 2015 at 8:07 pm - Reply

    Is a person immuned to Lyme disease after once being treated for it?

    Mary

    • Suzy Cohen May 30, 2015 at 8:21 pm - Reply

      No, if you get another tick bite, you can get it again. If you’re immune system is compromised, it can come out of remission too.

  54. Dawn May 30, 2015 at 8:14 pm - Reply

    Thank you for such precise information on Babesia. I love how you describe the Deja Vu part of things- I have had this symptom for as many years as I can remember, but no one ever thought much of it. I have read a lot on Babesia, but you are really the first person to mention it and describe the symptom so well!

    Anyhow, long story short, I was diagnosed with Lyme in March 2014, and have been in treatment since then. I did not discover the Babesia until October 2014, because we did 5 different tests for it and none of them were coming back positive (I even did a new test which is not yet on the market for Babesia through my Lyme doc) BUT, I have all the classic symptoms, and have been in treatment for Babesia with Malarone since last October. The symptoms are getting better with treatment, but it has been a long road. Babesia seems to be yet another co-infection which many Lyme patients may have yet not test positive for, and it also seems to be one of the toughest to treat successfully. We stopped meds after 4 months and when my symptoms resolved, but when we stopped the treatments the symptoms all came back, so back on treatment I went! I am looking forward to part 2 of this to see what kind of things you have learned on the treatment end of things!

  55. Susan May 30, 2015 at 8:15 pm - Reply

    Wow, Suzy! I had most of the heart symptoms last night. I almost passed out and then broke out in a whole body cold sweat .In fact, I’ve been wearing a heart monitor to find out why my heart has been racing at night (up to 200+) during periods. Currently on Coartem & Clindamycin rotating with quinine for Babesia. I think I was having a herx. Thank you for bringing this forward. You do everyone a great service. I know Sam is in good hands.

  56. Susan May 30, 2015 at 8:41 pm - Reply

    Hi, Suzy, thank you so much for sharing what you have learned so far. This can save the rest of us a lot of hunting in point us in the direction we need to go. I have been dealing with so many health problems, for so long.

    Reading this article should give me hope, but I just feel so overwhelmed! I had the bullseye rash on my arm in 2000: Dr. Tested with the standard lab test and said it was negative. But while waiting for results, put me on a strong anti biotic that made me so sick, he took me off it. But for years, even before that I had drenching night sweats (in my late 20’s & early 30’s), and had to urinate so frequently at night I thought I was coming down with diabetes (started early to mid 20’s). He said I was crazy, that I was “too young” to get diabetes. Well, I didn’t have that, but did end up with low blood sugar.
    I also have heavy Mercury load (had a mouth full of fillings, now removed by hazmat dentist) arsenic toxicity (from 40 years of contaminated well water), heart palpitations, insomnia, burned out adrenals (stage 3 adrenal exhaustion) and I suspect thyroid dysfunction, just to name a few.

    My fucntional medicine Dr. says we have to heal the adrenals and sleep issues first, then tackle the rest, or it will cause more harm to my adrenals. I stopped eating glutin, grains, and other cross reactive foods and lost 61 pounds of inflammation. But I’ve been on my adrenal protocol for nine months, and still don’t feel better, and sleeping only a little better.

    I just wondered if anyone else experiences this weird symptom? Every once in a while, and it comes on very suddenly, I feel like there is a large turnaquet around my chest, squeezing so hard it feels like I’m having a heart attack. It’s hard to breath in. But when I poke around, the pain is actually coming from outside of my ribs, from the back around to the front, up my neck, as well as down my arms.

    I went to the hospital and they checked my heart and they said everything is fine. When I have an episode, I have to lay down immediately and the squeezing pain is severe and can last anywhere from half an hour to one hour. The first time it happened at the mall, and I had started to enter a store that had a lot of plastic and stinky shoes so I guess the smell must’ve set it off. But now it happens even at home and the symptoms are the same. Just wondering if this might have anything to do with Lyme & company.

    Also, Suzy, I have always wondered, is Lyme disease & company contagious? For example, if you’re married and you’re kissing your marriage mate (or I guess, anybody, on the lips), can these little protozoans be in your saliva and get passed on to your marriage mate or other innocent person? I would really like to know the answer to that question, and so, I’m sure, what everybody else. Thanks.

    • Suzy Cohen May 30, 2015 at 9:22 pm - Reply

      In my opinion, Lyme requires the bite.
      So no, kissing doesn’t pass it around in my opinion, but other experts think it does because they’ve seen spirochetes in saliva. I’ve never known any partner (including myself) to catch Lyme and clan from smooching or from sex, and I know a lot of Lymies. The spouse remains fine despite sex, kissing and sharing glassware. (But if someone takes exception to this, you can certainly post your experience).

      • Marilyn Lesbo June 5, 2015 at 5:55 pm - Reply

        Seems like Lymes patients have enough to deal with
        There is bad info running around on internet that Lyme is an STD like syphillis
        If Lyme can’t be diagnosed with a blood test it is not in the blood right?
        Not an STD

        • Suzy Cohen June 5, 2015 at 9:01 pm - Reply

          Not an STD
          Sometimes Lyme (and Babesia) is tested positively in the blood, yes. The correct blood tests must be used.

  57. Joan Burge May 30, 2015 at 8:47 pm - Reply

    Hi my name is Joan and I have Lyme disease I live in New Zealand returning back home a year ago from Australia because I was so sick and had no support in Aussie but returning to New Zealand has put me in a very difficult position there is no medical help for me here do you do Skype calls I’m really in desperate need of professional help? Regards Joan.

    • Suzy Cohen May 30, 2015 at 9:16 pm - Reply

      Hi Joan
      I so wish I could take care of you, but I’m not a doctor and don’t do Skype consults. There are doctors here on my forum, maybe one will reach out to you.

    • Lisa May 31, 2015 at 10:00 pm - Reply

      Dear Joan, On Facebook, you can look up the site for “Treat Lyme and Associated Diseases”…The Doctors sponsoring this site have many years experience with treating Lyme and co-infections. There is a free webinar almost every week, normally on Wednesday evenings. You can sign up for this, and ask any question you have. Dr. R. will give you a knowledgable answer, based on experience and compassion. He donates an hour and a half of his time weekly to help LD/Co sufferers. They have also very generously published guidelines for both natural and antibiotic protocols.

      As well, you can book a consultation online or by telephone, if you wish, as their practice is in Seatlle, WA. My GP has never treated chronic LD/Co’s, and treats me by the recommendations for antibiotic treatment that were suggested for me personally during my phone consultation. The Dr. will send a report and recommendations (antibiotics, herbals, supplements) following the consultation, which you can share with your Dr. It has been a Godsend to me, since there are no LLMD’s in my area, and this has made appropriate treatment possible for me! Best of Luck to You! LIsa

      • Suzy Cohen June 1, 2015 at 3:57 am - Reply

        Thank you Lisa. Joan, she is referring to Dr. Marty Ross in Seattle. (Unlike other forums, I don’t mind you naming docs).
        He is a friend of mine and his “Conversations With Marty Ross” are available on youtube and his site. Good luck, tell him I said hi.

  58. Gayle May 30, 2015 at 9:30 pm - Reply

    What does rubber band sensations mean? I’ve had feelings of tight bands being around certain parts of my body, mainly upper and lower abdomen, but also sometimes in my head , arms and chest.

  59. Gudrun Bjorg Sveinsdottir May 30, 2015 at 9:43 pm - Reply

    May i ask you, have you heard of skin problems on sole of feet? skin turning into something like plastic/wax, hair turning very oily and like wire.. not like any hair people have on their heads! smelly, oily and just weird. face swollen esp around eyes, burning eyes broken capillaries on face… i have every symptom you mentioned and i most likely got ill in Europe.. obviously afraid tests won’t pick it up.. trying to figure out what is Lyme and what is from babesia.. thank you for a super article, helped me immensely. G

  60. RJ May 30, 2015 at 10:42 pm - Reply

    Hello Suzy, I read your article with great interest. I feel like I’ve been suffering from something since I was 13 when I found an engorged tick in an area not often seen by the sun. I’ve lived in South Florida all my life so I’m pretty sure it was a dog tick that bit me so I’m don’t think it’s Lyme.

    But a few things in your article about Babesia really made the light bulb go off. I’m 40 now and daily life is really getting hard to manage. The fatigue is ridiculous. I have to mentally check out and ignore the joint point and muscle stiffness just to get through the day because my job is quite strenuous. Definitely have some depression and stress. Sleep sucks.

    The temperature disregulation is definitely there. Cold then hot, walk into the sunlight and instantly sweat profusely. At night I don’t sweat but my torso is hot while my feet are frigid. The dejavu is interesting. I always thought it was because my memory is SO bad that maybe I remembered something I forgot in the past. Still not even sure if some of my memories are even mine. I feel pre-alzheimer’s for sure. Medically something is off with me too.

    I’m a meat eater and something is gobbling up my b12. I take shots now but it never seems to go up. I gain weight super easy and have to kill/starve myself to get thin. No energy for that anymore. I also have a serious vitamin d disregulation. I did test for Lyme and the only positive band was 41, a generic infection protein. About 10 years ago I had a live blood cell analysis done and we literally saw some type of organism inside a few of my red blood cells. Still don’t know what to make of that. So, I know you can’t diagnose but with what I’ve listed can you point me in the right direction? I’d really appreciate it. Thanks for your time.

    • Suzy Cohen May 31, 2015 at 2:03 am - Reply

      Hi RJ
      If it were me, I’d double-check the testing they did. You say, “I’m pretty sure it was a dog tick that bit me so I’m don’t think it’s Lyme.”
      What makes you think it is not Lyme just because it was a dog tick? That is a very common method of contracting Lyme and clan. Also, Babesia is visible in blood cell analysis, was that what it was? They should not have dismissed you if they saw something invading your red blood cells (which is where this parasite hides).I guess what I’m saying is you should do another test so if it’s positive, you can seek proper treatment and get better, and enjoy more of life. It is terrible to be dismissed like that, I really understand. I think the Babesia FISH test might be worth a try, or another live blood cell analysis with an LLMD, or Igenex 188 and 189 for Borrelia perhaps. All this said, I have to tell you again, clinical presentation is huge with this because the tests are not that accurate, they can’t identify and detect all the species. It’s a puzzle, do you fit the pieces of the puzzle? By that I mean, one puzzle piece— a tick bite —another puzzle piece — bad symptoms that reek of Lyme and clan — another puzzle piece — organism seen in your blood cells — another puzzle piece could be how you respond to gentle parasitic herbs or drugs (or immune boosters) how do you do on those? Get better? See what I mean?

      • RJ May 31, 2015 at 8:15 pm - Reply

        Thanks so much for taking the time to reply. I always thought deer ticks were the only ones to transmit Lyme and being so far south I felt it was a long shot. Also, I read about how debilitating Lyme is for some people and thought it’s been too long since the tick bite for me to still be (semi) functional as a person. When I had the blood cell analysis it done by a friend in med school. He was doing it on the side, working his way through college so it wasn’t in a lab setting. The only thing I remember about the experience is those little purple things inside my rbc’s. You definitely make sense about the puzzle pieces fitting together. I will have some testing done. Thanks again.

  61. Mary May 30, 2015 at 11:52 pm - Reply

    Dear Suzy, Thank you for the information you presented. Would treatment be different for Babesia Microti vs Babesia Duncani?
    Thank you!

    • Suzy Cohen May 31, 2015 at 1:55 am - Reply

      No, treatment would be the same as far as I know.

  62. Bridget tidd May 31, 2015 at 1:03 am - Reply

    Please email me anything you write about Lyme, babesia. And bartonella. Especially babesia
    Thank you!!!!!!
    Bridget tidd

    • Suzy Cohen May 31, 2015 at 1:55 am - Reply

      It will be sent to my newsletter subscribers via email, you just have to make sure you’ve joined, if you get my newsletter now, you’re good.

  63. Nora May 31, 2015 at 3:41 am - Reply

    thank you for your article. My daughter, 11 years old, was just diagnosed with Babesia but also has had Hashimoto’s encephalopathy, adrenal Insufficiency, and now Graves Disease. She is taking Atovaquone proguanil and Enula. She had Lyme Disease and co infections years ago which we think triggered her immune system to go crazy and now has autoimmune diseases. She also does IVIG.

    • Suzy Cohen May 31, 2015 at 4:26 am - Reply

      Nora
      You must be a great mom, I know how hard this is! She’s lucky to have you. How is she responding to IVIG?
      Is she more withdrawn or depressed on the atovaquone? Very common reaction to that.

      • Linda June 1, 2015 at 2:08 am - Reply

        I can’t get a doctor give me a good lyme test. I had a lyme test that is basic type thing that was negative. I can’t afford it especially if I need a more in depth one. My insurance will pay Igenex if a doctor would request it but they won’t . How do you get your blood cells looked at to see parasite? If I do have something it is 30 years ago at least. Would Lyme or the Babs show on lyme test now? if so would it be a particular kind because its been so long. I had a Lyme Ab/Western Blot Reflex
        Lyme IgG/IgM Ab Lyme Disease Ab, Quant, IgMI said I am negative. Would a blood cell parasite show up if you had something for 30 years ago. I have no balance function, headaches describe in the front and part of the left eye. I have arthritis and something wrong with my muscle. Maybe fibro but not as bad as some fibro people. I have a problem with my neck if I do any lifting or physical activity it gives me a headache. I was tested by a doctor years ago for blood pressure problem. I have a lot of floaters in my eyes but am told it is normal. My mother had them too. I have hot flashes but they are to me hot flashes from menopause can’t say they are severe. I have tinnitus some times worse than other times. Was told I have CSS central sensitivity syndrome. That my brain is just wired up differently. I hear nose louder than others and can smell stuff acutely. Also light is brighter can’t use my eye muscles to focus well. Been this way since probably 1979 to some degree. I took antivirals for a short time the doctor wanted to see if maybe they helped the ear problem. Like a cold sore problem but I have never had a cold sore. But he tested me for herpes and I was positive. I took them about a week at a low dose and was going up in the dose. But my head was like on fire and my chest and he told me to stop. It seemed like it might been a Stevens Johnson syndrome thing starting. I have insomnia that started with the balance problem because I will spin in my sleep. I have an odd thing when I wake up. It is a grid pattern. Like a piece of graph paper looks. Can’t say I have air hunger. I have low b-12 and low d. I have blood cells that aren’t mature from the b12 thing and pernicious anemia. I frankly don’t think I have Lyme. I was interested in what you wrote about the Babesia. I wonder if I have some other kind of bacteria other than either of these. I got ill with something when the inner ear started a sinus infection that went to my ears and wiped out my balance function. When it first started I could tell something had affected my brain. I would have wild dreams and a startled type reflex from what was going on. I also became OCDish. I have had medictions but any thing I take affects my mind. When I had b-12 shots. I got such severe out of body anxiety thought I was losing my mind. I already had that a little bit but the shots made it worse. I was told it was PTSD from dealing with the inner ear disease and other things. I had an MRI in 1997 that the tech said I have an area of tangling from something but because it was new technology they couldn’t really tell me what it means. Then a neuro said they were wrong. I can be going along doing stuff and have what I call a light switch thing happen. Like turning off my brain and when it happens my senses go down and I can’t hardly walk. It is very weird. Sorry to go on I know this is a lot and don’t expect answers. Just getting venting.

  64. Amanda May 31, 2015 at 8:24 am - Reply

    Hello,

    My boyfriend has been to many dr.s and everything you have said has been so spot on. Even about the drs. He feels as tho he is getting no where. Also, he also has a pineal cyst 9mm. He wakes up in the morning and sees everything in blue out if one eye he says for about one to two hours. Then two to three weeks later it will be the other eye. He has asked an optimologist about this and they say see a neurologist. However the neurologist he has seen has tapped him on the shoulder and said he has Lyme disease. He seen a neuronsergon, he said see an eye doctor, it might be something to do with the optical nerve. So I guess the question is has anyone else had this happen? and also any ideas what this could be?

    On top of all this he has the silver fillings 9 of them.. His insurance doesn’t cover dentist, or orthodontics. :-/

    He is a very good person feeling so heart broken after seeing several dr.s

    He also complains of feeling like he’s on fire from the inside out. Hes felt like this from the age of 19 to now 37

    Any info would help.

  65. gail toulouse May 31, 2015 at 9:24 am - Reply

    great article. thank you. i was misdiagnosed for 25 years. my pcp FINALLY did a lyme and clan test when i was going in to see her and i was sobbing, telling her i was dying. i was so incredibly ill…. i could barely function and per usual all she wanted to do was send me to the psyche ward again. for years that was her response.

    my friend, now very concerned for me as she’d seen my deterioration over the years, found me a naturopathic doc (dr. k.) who saved my life! (she’s not only lyme literate but active in advocating {even goes to washington d.c.}, and has seminars where she teaches other doctors about lyme and clan. she keeps up to date by going to conferences and reading. she’s wonderful.) during my first appointment with her she properly diagnosed me in 10 minutes! not 25 years! when my test result came back from igenex it validated her diagnosis of lyme and babesia. yes, she saved my life.

    i knew i didn’t have long to live if no one figured out what was wrong. i had actually resigned myself to dying. well, she started me on natural treatments. and she got me off my death bed. but we had another issue that presented itself 1 year after my diagnosis…i found mold growing on my bedroom wall. dr. k. told my care manager to get me out of there “today”….. so i have been displaced since march 2014….still waiting for another subsidized housing unit to become available. takes 1-2 years. bah. i think that because of the mold the treatments couldn’t really heal me. once i got out of the mold i did start improving a bit more. but then i ran out of money (used up all my inheritance and i’ve been too ill to work since 1989) – so i can no longer afford dr. k. – all this makes me insane; how my life has been ruined for so long because of corruption. (i won’t go there). how treatments are not covered by medicare so i can know longer get what i need to recover. so on top of being so ill i also have no hope.

    i need natural treatments as my body is so destroyed it can’t handle pharmaceuticals. not that insurance covers more than a month of antibiotics for lyme anyway. and i can’t get home care for food because i can no longer pay out-of-pocket. i can’t cook because of the lack of physical and mental stamina. argh. right now the symptom most horrific is the insomnia. 2 hours a night is it, for about 2 years now. the fevers, sweats, chills, headache (that i’ve had since 1988 non-stop), neck pain, heart palps, dysautonomia, bad cognitive issues, air hunger…got ’em all. this is unbearable…all the more so because i’m alone, left to fend for myself when i can barely function. i lost my partner to cancer 10 years ago and my family and friends have abandoned me. except 2. but they live 100 miles away so can’t be here much. country, community, and medical system have nothing for me! it’s pure hell and i’m amazed i’ve lasted this long with this agony and hopelessness. i keep on tho’… so thank you for sharing this. knowledge is power.

    • Suzy Cohen June 1, 2015 at 4:13 am - Reply

      Gail I see things changing for you soon, hang on <3
      There are people on this thread who really care, we all understand, we all have been in your position, and close to losing everything. Turn this suffering into inspiration for someone else and it will give you more purpose,just sharing your story here is a start.

  66. Kate White May 31, 2015 at 3:32 pm - Reply

    I was recently bitten by 5 lone star ticks. Their wounds are healing very slowly and itch a lot. They are also painful. I am experiencing intense fatigue. I think I have this and want to know how to heal it ASAP. I signed up for your newsletter.

  67. Wendy May 31, 2015 at 4:45 pm - Reply

    So what is the best treatment for lyme? Is there a standard protocol?

    • Suzy Cohen June 1, 2015 at 4:00 am - Reply

      No there isn’t a “best” treatment, and no standard protocol, that’s the unfortunate thing. People usually try Doxcycline but it’s usually not enough. Every person’s treatment should be based upon their main infection, or coinfection, and the symptoms they’re dealing with, and the SNPs they have. It’s unique for everyone.

  68. Jan May 31, 2015 at 4:57 pm - Reply

    I have had air hunger on/off for years…sometimes it last for only a day and then goes for months. I have dysautonomia and sweat constantly, but they tested me and said it is because I am losing the ability to sweat so my body is overcompensating now. I have pressure headaches like my head is in a vice and tinnitus, left sided weakness occasionally and other weird symptoms constantly. I have raging autoimmunity despite a very strict diet, no toxins etc. My tests for Lyme are mostly negative, with some equivocal. All of this started after living in New Hampshire 25 years ago when all of this began. I was diagnosed with CFIDS. Not sure what to do from here, because no one is able to figure this out or help me and I can’t take meds…too sensitive.

  69. Sherrie June 1, 2015 at 6:10 am - Reply

    Great article as always..I was diagnosed with Lyme disease after being sick for many years ..had many tick bites from living in the bush ..and had many other co infections too..blood test was negative for babesia but after reading your article pretty sure I have that one too..I bought a Hulda Clark zapper and done a few parasite cleanses but still really unwell, I’m currently waiting for herbs to do a more complete parasite cleanse so I really hope that helps and I’m currently going through menopause so life is nothing short of a nightmare..looking forward to reading part 2..Thanks Suzy <3

  70. Dawn June 1, 2015 at 3:40 pm - Reply

    After reading this article I think it’s a very good possibility that this is what is wrong with me! I have been going form doctor to doctor for nearly 4 years-all kinds of blood tests and other tests run – most want to write me scripts for anxiety and depression saying this is all in my head — I’ve felt like I was going crazy! But I have ALWAYS known something is wrong with my health and though it DOES affect my head, it’s NOT “all in my head.” 🙂

    I have 2 friends that were just recently diagnosed with Lyme, so I know it is in our area and I do remember a “bite” on one of my ankles back in 2006 that resembled a bullseye. Since 2009 I’ve experienced a ton of symptoms — they are ALL Lyme symptoms and now seems Babesia too! Most started manifesting the first of 2012, I also have been affected by mold in my house last year and am currently seeing a Naturopathic doctor for this – I’m going to bring your article in and see what he has to say. I’ve asked numerous doctors over the years for a Lyme test, but they all say – that it could not possibly be that –HA.

    Would you give me the name of a doctor who would test for Lyme and Babesia — someone who actually believes these exist! ? I live 20 minutes from Boulder, CO., so if there is someone in that area, PLEASE let me know. My air hunger is horrible right now, not to mention my digestive issues and the “fuzzy/spongey/dizzy/foggy” head !! The doc had me do an MRI to rule out MS – and it did — but did show I have inflammation in the parietal and frontal lobes with “mild white matter disease likely form chronic small vessel ischemic changes.”

    My quality of life has been hell, and this has been a huge burden on my marriage and our finances……. I can’t even remember the number of western doctors I’ve seen over 3 1/2 years – including going to the Mayo Clinic! Thank you for any referrals you can give me! I hope your “part 2” comes soon and that you address what diet we should be eating as well as some natural remedies! Bless you and your husband – finally someone who understands how we feel — and OMG your description of air hunger is spot on !! I also describe it to people as having your head held under water and finally being able to come up for air! Thank your for your articles and help!!

    Dawn

    • Suzy Cohen June 1, 2015 at 5:21 pm - Reply

      Hi Dawn
      If you order the test from Igenex (it comes to your house, for free) you can then have your own doctor sign the requisition on the upper right hand corner of the test form, then include a check to pay and go to Labcorp yourself. You don’t need to wait for anyone to get the test. You just have to convince your own physician how important this test is to you, it’s just a signature it should not be any big deal, it would shock me if a doctor didn’t want you to test for this infection. You are going to the lab yourself with the kit to have a phlebotemist draw your blood.

  71. T. June 1, 2015 at 3:59 pm - Reply

    Suzy,
    Good article and good info.
    I have been experiencing numerous symptoms over the past 24 years you have listed in this article. The prevalent being a never ending headache that I live with from the time I wake up in the morning to the moment I fall asleep at night.
    I was bit by a tick on the hamstring tendon of my left leg in April of 1991 while in the woods camping. There was no true “bulls eye” that showed after removing the tick, just a little bump at the site of the bite that remains to this day. Shortly thereafter, I began to experience severe vertigo that made walking a challenge and driving dangerous. My family doctor performed a Lyme disease test that came back negative. The severity of the vertigo lessened but left me with the never ending headache that will not subside. Along with the headache comes the “brain fog” and confusion. Other symptoms that seem to occur too frequently are loss of short term memory, sweats, deja vu, blurred vision (even double vision at one time for about three days), neuropathy, profound fatigue (even though I run and exercise regularly), pain shocks and so on…..
    I have been to headache specialists who tell me 3% of the population get headaches; they don’t know why and there is no cure for them. They can only mask the headaches with medications; I went through numerous prescribed meds before taking myself off of them due to the effect they had on me. There was one point where I could not remember the previous two weeks of my life due to the medicine induced “buzz” or “high” I was on throughout the day. In my profession and daily responsibilities, I cannot take “brain numbing” medications and still be productive while provide for my family.
    I have visited Mayo Clinic twice, seen numerous neurologists, three family practice physicians, a physical rehab specialist and an acupuncturist. They have put me through MRI’s, CAT scans, two Lumbar Punctures and too many blood tests to count to try to find something that is causing my ailments. The good news is they always tell me they found nothing and that I’m in perfect health. That’s also the bad news; they found nothing.
    I continue to plod through life with a big smile on my face to mask the pain and confusion.
    I have been blessed in so many ways throughout my life I know life could be so much worse, but it could also be so much better without this curse.
    I will keep searching for that specialist that will confirm and pinpoint which one of “the clan” is the culprit for my illness. I can then begin to find a way to break down each symptom.
    I hope to have a great follow up comment in the near future that will help all.
    T.

    • Suzy Cohen June 1, 2015 at 5:17 pm - Reply

      Dear “T”
      I cannot even begin to tell you how well I understand your journey, and have compassion for you! So many parallels with my sweet Sam who also had headaches for many years. I relieved those 100% (only once in a blue moon does he get those). The tips were shared in Headache Free book. I am glad you still keep getting ‘good news’ even though (I know) it’s also “bad” news. Do you live at altitude or sea level? Do the headaches get better at sea level? It’s a clue.

      • T. June 2, 2015 at 5:21 pm - Reply

        Suzy,
        I live at 140′ above sea level; not too high. I do have a trip coming up that will be at sea level and will take note of any change in the severity of the headache.
        Thanks,
        T.

        • Suzy Cohen June 3, 2015 at 5:40 am - Reply

          It may not be evident to you then, usually you see the change if you go down thousands of feet, for example, Denver to San Diego (a mile high, down to sea level). You probably won’t notice anything going a 140 feet down.

  72. Connie June 1, 2015 at 4:34 pm - Reply

    Dear Suzy,
    Really appreciated your informative post. Looking forward to part 2. For 22 years I have struggled with so many of the descriptive problems that you addressed. For years & years I’ve been to many Doctors, Conventional & Alternative & Chiropractors, all to numerous to count. I have been diagnosed with Candida, Fibromyalgia,Chronic Fatigue, Had Complete Hysterectomy in 2007. Also found Nodule on Thyroid that I take medication for. My physical and Mental state have declined rapidly through the years.

    Almost 2 years ago I got positive results that I have Lyme’s. Dr. put me on Nystatin for Candida’s and some other antibiotic for Lyme. Many supplements that I still take. Took me off of Antibiotics because he said they weren’t working. We made no progress with this Dr., so we started going to another Dr. She put me on Azithromycin and Nystatin. Just recently called from CDC with positive for Brucellosis. Waiting on blood tests for other Bacteria culprits. I am nervous that she will be yet another Dr. who drains our $’s [dollars] and I get no results. I just want to feel normal. It has been such a long struggle.

  73. Nancy June 1, 2015 at 7:16 pm - Reply

    Hi Suzy – Love your articles!
    Just wondering what you think about the studies of Dr. Ernie Murakami’s on Lyme?
    Here’s his FB Page.
    https://www.facebook.com/ernie.murakami?fref=ts

  74. Angela June 1, 2015 at 7:28 pm - Reply

    Hi Suzy,

    Can you name the SNP that makes ozone treatment harmful? I am currently undergoing IV chelation for lead and mercury toxicity and the doctor recommends ozone therapy as well. I had my first treatment today. I have a MTHFR genetic defect among others and I have googled everything I can think of but can’t find a website that names the SNPs in question. I have my 23 and me test results already.

    Thank you!

    • Suzy Cohen June 2, 2015 at 4:35 am - Reply

      Yes, I promise, I am sending it out to almost 100,000 people at once, in my sequel article which is still incomplete as of today.

  75. Jen June 1, 2015 at 10:26 pm - Reply

    I have just about EVERY symptom of this disease O.o I have been to the ER with Palipations and a HR of 140(they did an EKG).Insomnia, the lack of air, anxiety etc etc etc.You said there is no treatment?(I dont have insurance either)Following this..would really like to know what could make my life easier!Been living with this 11 years now and the past 2 years have been aweful

    • Suzy Cohen June 2, 2015 at 4:28 am - Reply

      Hi Jen
      There is treatment, I’m writing a sequel that will give tips for this, however, there is a lot of information at websites from doctors who are lyme-literate, and also on youtube, look up Dr. Richard Horowitz, Dr. Marty Ross and Dr. Schaller.

  76. Cindy June 1, 2015 at 11:08 pm - Reply

    I believe I have had lyme for a good 30 years, and I was just diagnosed this past fall through Ingenix. I was only tested for lyme though. Since I started treatment for lyme, as time goes on, I very gradually have gotten a bit better (by the way, I also have taken herbs for Bartonella and Mycoplasma). But about six weeks ago, I started getting new symptoms that I’ve never had before — a lot of facial numbness and feeling a lot of pressure in my frontal sinus and behind my eyes! Also my back started itching like crazy, a lot more than it ever has! I have started feeling really hot a lot, and have a harder time sleeping than before. And I am feeling like things are moving in my head all the time! My LLMD states she feels it is Babesia, which I had not been treated for. So now I have started taking Malarone twice a day.

    When I first started feeling so sick about 30 years ago, I was HOT ALL THE TIME and sweat so much. I had just had a complete hysterectomy, but hormone replacement never helped at all! I also have asthma, and was using my albuterol inhaler, but shockingly, it never seemed to help much. I was exhausted all of the time. When I woke up from sleeping in the morning, I felt like I had never slept a minute. My doctors treated me with antidepressants which never helped. I could not concentrate whatsoever. I was so tired I wanted to die. I had no life. But what shocks me is these symptoms, after about 5 years, did subside quite a bit for some reason, despite the fact I was not under treatment. And NOW my LLMD feels my current symptoms point to Babesia. I am really thinking I have had Babesia for all of these 30 years. But do symptoms “change” with this chronic illness? I sure hope the Malarone starts helping soon! I would love your opinion, Suzy.

    • Suzy Cohen June 2, 2015 at 4:34 am - Reply

      Symptoms do change.
      Sometimes treatment wakes a sleeping giant. Malarone can cause mood changes don’t be alarmed if your mood sinks (happily, it is reversible).

  77. Aimee June 2, 2015 at 2:12 am - Reply

    My 6 year old son just tested positive for Lyme and his naturopath is wondering if I could have passed it to him in utero. I have never been tested.

    I have never suspected Lyme but have had moderate undiagnosed health problems all of my adult life. Do you think I should be tested?

    Anything you would add about kids with Lyme would be greatly appreciated! Keep it all comin’!

    🙂

  78. julie edinger June 2, 2015 at 3:44 pm - Reply

    Would food grade diatomacious earth be of any benefit?

  79. Cass June 2, 2015 at 5:21 pm - Reply

    Hi Suzy,
    I am very thankful that you wrote this article about Babesia. I believe that I contracted the WA1 strain in 2000 and it went undiagnosed for 12 years. Finally an infectious disease Dr tested me and my WA1 IgG antibody was 1:2048- so explaining all my symptoms that you listed above. I have tested negative for lyme.

    So far I have done 3 rounds of mepron/azithromyocin and would feel better for 6 months but my symptoms would come back. Now I have a trashed gut from the antibiotics and feel like am at square one again. I also want to add that a Dr before the one who diagnosed me suspected babesia (at that time was negative on blood test) and gave me high doses of artimisinin for 4 months. After a month my right eye wandered and vision got terrible.

    My current infectious disease Dr and now ocular neurologist at UCSF both feel that the artimisin damaged the part of my brain relating my eyes. I now wear strong prisms and have difficulty seeing even with my glasses. I’m not sure if you have heard of this as a side effect, just my experience.

    I am wondering if it is even possible to get rid of Babesia or if trying to get my immune system and gut at the best possible level is the most realistic way to go about it. I want to be hopeful.
    I am looking forward to your nest article in 2 weeks!

    • Suzy Cohen June 3, 2015 at 5:39 am - Reply

      Hi Cass
      It can be liver and neurotoxic. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC127487/

      • cass June 3, 2015 at 7:00 pm - Reply

        Thanks for the link Suzy.
        I also feel I should mention that 15 years of no sleep has been torture and seems impossible to get my immune system back without the rest my body needs to get repair. A few weeks ago, completely randomly, a guy who owns a medical cannabis tincture company gave my husband a sample of his “insomnia relief” for me to try. It is the CBN cannaboid which is a sedative (does not make you high). It is the first thing that has ever helped me sleep! I don’t feel tired when I take it, I can wake up in the night and go back to sleep and don’t feel drugged in the morning. A quarter dropper has worked so well for me. I am not even sure if I am getting the alternating hot/cold all night which usually makes it impossible to sleep. Just by sleeping for 3 weeks I feel more hopeful that I will have more energy to tackle this parasite. (Ambian, melatonin… hasn’t even touched my insomnia in the past) I wanted to share in case anyone else has terrible insomnia. thanks!

        • Suzy Cohen June 3, 2015 at 10:45 pm - Reply

          Thank you Cass, are you referring to Charlotte’s Web?

          • cass June 4, 2015 at 4:29 am

            I haven’t heard of Charlottes Web but will look it up. My husband was doing a tree job and the neighbor of that job site offered him some samples of his tinctures (that’s the random part).
            Here’s his website:
            http://altacaliforniabotanicals.com/products/
            and the bottom formula is what has worked every night since I tried it. He said he’s the only one in California making the CBN cannaboid so I got super lucky that it was on our counter when I got home. I think that the CBD cannaboid is more common and people take it for anxiety. I went from 1/2 dropper (of the Insomnia Relief) quickly down to 1/4 dropper a night. He said soon a few drops under my tongue should work. The amazing thing is that my neighbor who went through benzo withdrawal (135 mg x day for tinnitus- crazy) wasn’t sleeping at all. He takes 2 droppers a night and sleeps like a baby. I am not sure about the other tinctures but this one feels like it is saving me. I actually was ready to get up at 6:00 am on Saturday because I slept! You don’t need to post this to the site but wanted to pass on that this really works for difficult insomnia.
            My friend is a toxicologist and had started a study on artimisinin. She said that animals got brain damage after 2 weeks but if you had malaria there is no other choice so fine to risk 5 days. I had taken it one month by then (of course stopped) and my eye had wandered and vision shot. All the lyme Dr’s recommend 4 months! My current Dr said that is crazy.
            Thanks for sharing your knowledge Suzy. I hope that your husband has gotten rid of Babesia.
            Thanks Cass

  80. Lori June 2, 2015 at 11:45 pm - Reply

    Hi Suzy,

    I recently had an Igenex Western Blot and I am CDC positive on IGM, however my Dr. also wanted to run the newer Ispot Lyme test. They say this measures how active the lyme is… I am confident I have had this for a long time (years), never been treated for Lyme, yet my Ispot is negative.
    According to the company website this means the lyme infection is not active and that treatment is working. (I’ve had no treatment yet.)
    Can you elaborate on this?
    So confused.
    Many Thanks!!

    • Suzy Cohen June 3, 2015 at 5:36 am - Reply

      I covered this in complete detail at the end of Headache Free book, if you have a copy of that, there’s also a chapter on Lyme headaches. I don’t think iSpot is valid if you have had Lyme a long time.

  81. Chris Richey June 3, 2015 at 2:20 am - Reply

    I posted your article for the Alpha Gal facebook support group on FB. We all have the alpha gal/red meat allergy from a tick bite. All of us have complained that we think there is more going on in our bodies than the alpha gal allergy, because of the strange symptoms we have all had. Your article has given us the necessary information to take to our doctors. They need to believe us and we need to get further testing done. Ticks are natures dirty needle and I hope the medical professionals soon realize this and treat us for this terrible coinfection.

  82. Marie June 3, 2015 at 12:35 pm - Reply

    Hi could u please tell me what kind of tests/ doctors use to diagnose Lyme disease and anything similar? I have really bad ibs tummy problems and brain fog/tiredness? I’ve never remember being bitten by anything how would u know if u were or not? I’m in ireland thanks

  83. lara June 3, 2015 at 11:59 pm - Reply

    hi Suzy

    If you were struggling with a bunch of symptoms and you wanted to do the most reliable test for Lymes which one would you do? Does this test also for Babesia
 that you mention in this article. Also I live in Australia and wondering could you recommend the best doctor here for treatment is I do have Lymes that will consider your genes and all the other factors you mention in the article

    Thank you so much

  84. Nola June 4, 2015 at 2:08 am - Reply

    Bless you for your most helpful article!

    I look forward to the follow up article on the next steps to take to overcome these disabling symptoms. I have severe weakness, dizzyness and constantly feel like I’m about to collapse, plus pains that move around all the time and most of the symptoms mentioned. Brain no longer works and never a moment when something doesn’t hurt or make me feel like I’m dying! Can’t even remember when I last felt well and now in my 70’s. Endless searching for answers keeps coming back to what you have written about.

    I hope you can discuss treatment options possibly available from naturopaths and natural supplements as officially Lyme “does not exist” here in Australia – except for a few rare doctors thousands of miles away. Plus I have very bad reactions to most medications. So need a D-I-Y (do it yourself) treatment plan as no testing or treatment available via any local doctors.

  85. Sheila Eckel June 4, 2015 at 2:55 am - Reply

    Hi Suzy- what a devoted healer you are! Thank you for the reply to my previous post.

  86. Jacquie June 5, 2015 at 1:37 am - Reply

    Hi Suzy,

    Yes, thank you for publishing this piece on Babesia. My Lyme doctor feels that this is what is wrong with me – in addition to Bartonella, because I have had really severe neurological sympotoms for the past few year, but they have improved with treatment. However, I have not gone the antibiotic route because I already had Candida and antibiotics would just be very detrimental for my gut. I went undiagnosed for basically two full years, while I had terrible pain in my head that felt like acute nerve damage going on. This started sometime in 2011-2012, and I tried numerous things, but had become so sensitive and allergic I could not tolerate any of the things prescribed, including a thyroid medication. It seemed that just not taking anything for awhile except basic B vitamins and methylfolate, and a few other “safe” things, including Optimal Detox Powder was the best thing for me to do. Gradually, this condition has improved however, but the symptoms have at times been completely intolerable – and sleep deprivation, the feeling of not getting enough air or breathing easily, etc. and especially at night all these symptoms getting worse has plagued me too for the past three or more years.

    My Lyme got worse by November of 2013, when I finally got “the correct diagnosis” that fall. Fortunately, thanks to others online whose posts I was reading, and one person who had Lyme who suggested that this was what I may have too – and also reading your book on Headaches, is how I finally got the IGeneX testing done, and proved positive. My doctor feels that Babesia basically took over my head, and caused the awful ordeal, but as far as testing positive for it, I have not. But he believes that Babesia is in fact responsible for many of my horrible symptoms too.

    I have not been able to treat it with antibiotics since I am allergic to all – so have had to do all the natural stuff – herbals, vitamins, detox, GI powders, etc. I started out trying Byron White formulas, but those were very harsh on my system, and I seemed to become completely intolerant of those and especially they have aggravated the lining of my esophagus and GI tract. I had some success with things like Phosphatidyl Choline and serine as well as the Myer’s IVs – those really help – and I think those are one of the best alternatives, in fact! I take glutathione and other things for methylation, as well as the vitamins, Ashwangandha, and also things that will help with Candida – olive leaf extract, Turmeric, Curcumin, etc. I have taken all of this stuff for the past two years now, at least, and many of my symptoms are better – but not gone! My head symptoms gradually calmed down and the worst of it is definitely over with, but when it happened, it was like something had completely taken over my insides, and I had no control over anything, and normal bodily systems became severly impaired, and my gastrointestinal tract really completely failed on me. Finally though, two years later now, I am much, much better but the quality of life is still not where I would like it to be – but I am grateful to be “back” to some degree and life is much more tolerable now. I still have difficulty sleeping at night and am always looking for something that will not disrupt my normal circadian rhythms, and will help with trying to get the sleep cycle back and stabilized. Some nights I do seem to sleep better than others, but there is a constant struggle to make it through a peaceful and restorative sleep at night. I have had really strange feelings similar to what you described above, and also senseless inapproriate types of memory flashbacks, or even dreams that are from another time in my life in the past and had nothing to do with the present. But those too have diminished a good deal. The one thing that is very disconcerting though, is how you can feel better one day, and then something throws you off again, and you change, without any understandable reason. I have also had to deal with looking strange and worn down, too – and it isn’t a nice thing. But there have been good days, and while I think my tick bites came from our yard – we have a yard full of deer – I try to wear bug spray and stay out of the way of the ticks, but there is probably no total avoiding of them. Bug spray though is a definite for anybody with this problem – and I don’t mind wearing it and staying covered up.

    I have had some success with Cat’s Claw and Artemesinin, as well as using Banderol as herbal drops in water, after having other bad reactions to some things like Cryptolepsis. But the merry-go-round of symptoms you describe seems to be similar to what I experience where certain supplements do well with me for awhile, then eveything “flips” again, and I seem to become allergic to what once was helpful to me and symptoms return. The good thing though, is that when they do return, they are much less severe than they were originally. No more night sweats or day sweats for me – that seems to have subsided. When I do get the symptoms though, I try to leave things off for awhile, and hope that eveutally I can go back to it again. Anytime something gives me that kind of reaction, I feel that I cannot take it anymore, because either herxheimer reaction is too bad, or I have somehow “used it up.” Recently, however, I have also tried some of the essential oils. Oregano oil was too strong for me, but Frankincense seems to help, as well as Eucalyptus, Lemon, and Lavender oils. It is important not to overdo these things, but in small amounts applied to the skin, or in water, they do seem to help.

    When you mention the cystitis, one of my more recent symptoms has been the development of cysts on my thyroid. I wondered if this could have been the result of irritants (like Byron White formulas) taken when I was so desperate to try whatever I could, but they seemed to scald and burn my insides. Things like Coconut water, Aloe Vera Juice, and Coconut oils, as well as the probiotics and digestive aids have over time, healed the worst of that, but I now am suspicious as to why the cysts developed – unless this is just another side effect of Lyme. I would love to know what you think could be the cause… of course it might not be easy to find out, but I have tried Castor oil, on my skin, and with a heating pad, along with the Frankincense oil. This does seem to relieve the pain from the cysts, but thyroid medication and iodine are not things I can take, so that isn’t an answer for me.

    Thank you again for all of your wonderful insights and health advice! I hope your friend that you mentioned does get the right diagnosis. No on needs this Lyme problem, or the wrong medical treatment for it – that’s for sure!

  87. Jacquie June 5, 2015 at 1:48 am - Reply

    Also – just wanted to add – I have had really weird problems with my eyes too – pressure that built up behind them, and I have to squint really hard at times, just to read something; as well as feeling like the eyeball itself has some type of hard pressure going on, and definitely interference with the optic nerve, and the back of my head and front of my head seemingly not “working together” the way they should. Almost like I had a break occur between the front and back of my brain. Sorry to be so graphic – but that was the feeling that I lived with for the past three years.

    This has improved though, a lot. But still, how I wish I could just heal this huge problem, and feel like the old me again… sometimes I’m back, but I am also not the way I used to be, but just have to keep on plugging at it, and hope someday it will be gone… or somebody will come up with a vaccine or some other revolutionary way to eradicate the organism.

    Good luck to other people on here with your symptoms too!

  88. Diane June 5, 2015 at 11:34 am - Reply

    Curious thoughts since there are many hunters in my area…
    Do deer fall to these diseases, too? What about consuming venison(deer)meat? I would think the parasite would live in the meat, cooking would kill it. Then, wouldn’t you want to be careful handling raw deer meat?

    • Suzy Cohen June 5, 2015 at 9:10 pm - Reply

      Hmm these are great questions. Hunters frequently come down with Lyme.
      Yes deer get bit by ticks, they are a common vector.
      I don’t know about handling meat. Doubt it.

  89. Kathy June 5, 2015 at 8:05 pm - Reply

    I am in the process of blood tests to diagnose Lyme and its co-infections. Well over a thousand dollars in out of pocket expenses just for the blood work . I had a bulls-eye rash 7 years ago and sought treatment. At that time 2 weeks of antibiotics was the norm. Today it is 4 weeks. My point being, if you sought treatment in a timely manner seven years ago, it was probably not enough. I have micro-managed many of the symptoms you have discussed with vitamins, supplements and a very healthy diet. To no avail… I am exhausted! When that diagnosis comes, I will be re-reading your article to make sure I am getting the right treatment . With many thanks Kathy

  90. Pierre June 5, 2015 at 8:12 pm - Reply

    Suzy did you ever look at MMS (Master Mineral Solution) from Jim Humble (Genesis II Church http://mail.mmsnews.org/link.php?M=53270&N=60&L=92&F=H) Website http://genesis2church.is/.

  91. Robin Gerstad June 7, 2015 at 4:42 am - Reply

    Hi suzy. thanks for the great article. I have a question about treatment. perhaps you could address this in more detail in part 2. I am currently taking mepron and azithromycin for babesia. I am also taking tons of supplements, mostly recommended by my functional medecine practitioner. I have read a lot of different things about coq10 and mepron. also heard that I should take it with fat, preferably some nut butter, but don’t take fish oil or any other oil based supplement with it. can you clarify about the coq10 and also any other possible contraindications between commonly prescribed meds for babesia and supplements? thank you!

    • Suzy Cohen June 7, 2015 at 10:40 pm - Reply

      I will keep your questions in mind for Part 2.
      Yes, you’re right take Mepron with a meal, preferably fatty.
      No CoQ10 on that drug, it works by stealing CoQ10, that’s it’s MOA. I hate that though, bad for the body.
      You doing ok on it? Many people feel awful when deprived of CoQ10.

  92. melanie June 7, 2015 at 2:29 pm - Reply

    I have been treated receiving Goiz magnetic pairs. I feel like I’m waking up after years of sleep walking…it’s a strange feeling.
    Most all of my symptoms have disappeared. I will continue to address gut health in hopes of healing and no more food intolerance or auto immune response.
    I urge everyone to find a practitioners that offers Goiz therapy! It is a life changer.
    I also carry emf protection (lamda pulse) to ease AI response to wifi and florescent lights and smart meters and mold in public settings that are beyond my control.
    I’m awake and life is beautiful ~

    • Suzy Cohen June 7, 2015 at 10:38 pm - Reply

      Thank you Melanie, which EMF protection device are you using? Do you have a particular practitioner you like, or a page where people can find someone local? Here’s the main page:
      http://www.biomagnetismusa.com/

  93. Jill June 8, 2015 at 7:37 pm - Reply

    Hi Suzy,

    Thank you so much for this article and for being such a champion of us Lyme Complex Sufferers. I’m a 36 year old woman who may have been born with Lyme Complex or contracted it at an early age. I didn’t become seriously ill until a year and a half ago, major stress and a serious accident set the infections off.

    Babesia is the worst beast of all for me. My latest antibody levels were 1280 and my symptoms are severe, constant, and debilitating. My Doctor is a Lyme specialist and brilliant, and yet he’s now out of ideas to treat the Babesia, which of course is not very encouraging. Thus, I’m eager for part 2 of this article. I’ve tried and failed on IV antibiotics, Malarone, Alinia, Ivermectin, IV Artesunate, and all the herbs and herbal formulas for Bab. I’m hopeful you might have some suggestions I haven’t tried. When will part 2 be released? Thank you so much!

    • Suzy Cohen June 8, 2015 at 9:59 pm - Reply

      Hi Jill
      I’m working on it. Part of my ‘thinking’ for this sequel article is how to REALLY make an impact and help people just like you… who are at their wits end, who are spent, tired, frustrated and still willing to go on. I am not really trying to find better KILL agents, lord knows we have enough of those, they don’t work well, or for long anyway, so it’s about supporting the body more, and getting the body to calm down (reduce cytokines, ramp up immune sx). That’s what I’m still researching.

  94. Jacquie Daulby June 8, 2015 at 10:50 pm - Reply

    Hi Suzy, My 19 year old daughter has been having headaches for 8 months now. Her neurologist has ruled it migraines. However I do not believe that is the case. She has several other symptoms with the headaches. She experiences sweats, insomnia, heart palpitations. She has depression, mood instability, and air hunger that comes and goes. She says that she feels like her brain swells and she will feel like she is not even in her own body.
    She was tested for Lyme disease once and I finally got a new neurologist to test her again today. She has had every MRI, MRV, MRA, ct scans x rays and blood work possible done. Even Ms was done. EVERYTHING comes back normal. We are so frustrated and don’t know where to turn. Do you have any ideas?

    • Suzy Cohen June 10, 2015 at 3:55 am - Reply

      Did they test her using Igenex?
      Most labs will be normal with Lyme. That’s the normal actually, people look great and labs are usually good.

  95. connie child June 8, 2015 at 11:26 pm - Reply

    How can a doctor treat you when he doesn’t know what he is treating. It would seem to me that there is certainly enough cases that doctors would be studying up on this. Usually the first doctor that you see is a general practitioner who knows very little about lyme, never mind babesia or bartonella. I was sent to a neurologist and he did not know what bartonella was. I walked out of his office. I also interview doctors that I will be seeing before I make the appointment. The first question that I ask is what lab do they use. I tell them about I-Genix lab in California and most have never heard of it. The reason that I do this is because I was tested so many times over a period of 18 years and always tested positive until one doc sent my blood work to Cal. and it came back positive as well as having babesia and bartonella.Can’t wait for your article on bart because it has been a real bear for me.
    .

    • Suzy Cohen June 10, 2015 at 3:54 am - Reply

      Thanks Connie, good idea! Interview them before paying for a visit.
      (Same with Sam, 18 years of misdiagnoses and negative Lyme tests, then he tested with California Igenex.)

  96. Erin holden June 10, 2015 at 2:29 am - Reply

    Hi there, just diagnosed with babesia ducani today and am extremely interested in hearing next steps!

  97. karen June 11, 2015 at 5:33 pm - Reply

    Hi Suzy,
    I was just checking back to read all the comments, really those are where I have found my best results and it’s great that you have opened that avenue to so many Lyme stuck patients like myself and my daughter. As I commented before the Babesia sweats are a symptom but now I’m wondering as I thought I was getting better, they seem to be happening more. Does that mean it’s coming back rather than going away? Another disconcerting factor, I have found that Artemisinin has been a great helper but as I read through the comments it’s sounding not so good for me. I have noticed my eyesight has gotten tremendously worse throughout this whole Lyme sickness but attributed that to the Lyme disease. I have found that if I take the Artemisinin first, give it 30 minutes and then do the Nutramedix protocol that’s where I have had the best results. I only do the artemisinin in the morning and at night. My symptoms connected to Babesia are my thumbs where they connect to my palm area, my inner elbow bone notches, wrist where they connect to my arms, bottoms of my feet and my big toe joints. When it was in the onset stage my forearms and calves, couldn’t lift my arms, almost couldn’t walk and brain fog was intense. I’m telling you this just for all the other readers out there to compare symptoms. I’m also rubbing Frankincense Essential Oil on all the affected areas whenever they act up, that seems to help. I read the link you posted about arteminsinin but I’ve also read other articles that say people use it for cancer and have stayed on it consistently for even up to a year. Questions, questions, questions thank you for all your answers and commitment to this!!

  98. Ribasus June 12, 2015 at 2:17 am - Reply

    Your article on babesia is an eye opener and a Godsend. I have every single one of the symptoms and have been at wit’s end with all of this. So many random symptoms which the doctors will pigeon hole into neat diagnoses then treatments which either make me worse or do nothing. Now, at least, I have something to go on. And the next challenge will be to get my new internist to consider chronic lyme disease and babesia.

    I have been suffering for a good 15-18 years. What sort of tests would reveal an accurate diagnosis after all this time? I am sure I contracted this sometime between 1994-2001 while in New England. I have been back in New Mexico living at a very high altitude since late 2001… getting sicker by the minute. Cannot wait for your next article.

  99. Patty Sullivan June 12, 2015 at 3:26 am - Reply

    this has got to be one of the best articles I have read about Lyme and Co.

    it is clear and concise from the symptomatic and medical side but so wonderfully understanding and compassionate from the human side of the disease.

    we are more than our symptoms and you have captured this in your article.

    I must read Part 2 asap, love and blessings to you and yours

    • Suzy Cohen June 12, 2015 at 5:15 am - Reply

      Thank you Patty, you are very kind. I’ll finish Part 2 asap 🙂

  100. Karen June 13, 2015 at 2:04 am - Reply

    Hi Suzy. What an incredible article. It’s really helped family and friends get a better handle on what’s happening to my body. I’m now desperately waiting for Part 2! I’m really struggling with air hunger from Babesia. Any tips on that before the article comes out? Also, have you heard of someone losing their ability to absorb Omega-3s from Lyme, Babesia or Bartonella?

  101. Bre June 13, 2015 at 3:46 am - Reply

    My child tested positive for Lyme but is not displaying symptoms. I know so many in this situation…. do you treat or wait for symptoms? Any advice for this situation?

    • Jill August 11, 2015 at 4:48 pm - Reply

      I would say no, do not wait! I think the longer you wait, the harder it will be to beat. It will NOT go away on its own. Please find a LLMD to advise you!

      • Terry B August 16, 2015 at 4:04 am - Reply

        I agree, you need to treat right away, you may not show symptoms for years and then you have a huge problem.
        I was diagnosed 11 yrs ago add the 4 years it took to diagnose my husband…I didn’t have symptoms but I did have multiple positive bands.
        Between then and now I’ve had 27 surgeries I have bad gastro and neurological issues. I’ve had an inflamed growth in my brain stem found 8 yrs ago it is inflamed in every MRI..seeing a special group of neurologist at University of CO Hospital , don’t know if they will agree with the Lyme diagnosis. Oh and a year ago I was diagnosed with Sarcoidosis I see a sarcoidosis dr/research at National Jewish also in Denver. I live 2 hours away and I am totally frustrated at the lack of Lyme knowledge and acceptance.
        Treat your son NOW….DO NOT Wait…

    • karen August 16, 2015 at 9:07 pm - Reply

      O my goodness! i have had lyme since i was a child and almost crippled now. Lyme will turn CHRONIC if not treated early.. then you have A REALLY BIG PROBLEM —> especially in children! i have lost many friends due to this horrid disease please find a LYME LITTERate DOCTOR and get your child treated!

  102. Karen Sperling June 13, 2015 at 5:58 pm - Reply

    Your article is very informative. I have been dealing with Lymes symptoms for years, no real help from Drs. I recently saw Dr. Rebecca Risk, in Calgary, Alberta. She is a Chinese medical doctor Finally someone who is doing something to help me!!

  103. Janet Hughes June 14, 2015 at 9:55 pm - Reply

    Please, please, please when do we get part 2 on how to cure this terrible disease?

  104. Rachel Scofield June 16, 2015 at 1:48 am - Reply

    I would like to know how to treat babesia

    • Kathy June 25, 2015 at 4:17 am - Reply

      I use Artemsinin by Allergy Research Group. I had to start very small (1/4 of a capsule once a day). It took months, but now I take one capsule three times per day (8 hours apart). This seems to work and I am staying on this treatment. My liver function is AOK. Some days I just take two capsules now that it has improved.

  105. Martha June 21, 2015 at 1:23 am - Reply

    I want to hear about reducing parasitic load, especially relating to insomnia

  106. christine June 21, 2015 at 2:01 am - Reply

    I was diagnosed with Lyme and was treated but experience terrible air hunger and am now wondering about Babesia and need to find treatment /MD in the NJ area to help?

    • Kim August 7, 2015 at 2:09 am - Reply

      I wasn’t diagnosed with Lyme, but with fibro and chronic fatigue. I have experienced terrible air hunger and have struggled to figure out what it is and how to deal with it. I was so grateful to hear it talked about here!
      I am wondering about Babesia and wanting to find treatment as well. I am in Wisconsin. My MD might be willing to help with this, but I need to be able to talk to her about _how_.

      • karen August 16, 2015 at 9:10 pm - Reply

        There is NO such thing.. it is LYME —–> just a bunch of diseases doctors made up..if you notice all the symptoms are identical and they CANNOT tell you where fibro or CFS came from ! Get to an LLMD and get treated..

  107. JR June 22, 2015 at 5:16 pm - Reply

    Excellent information, Thank You Suzy! Looking forward to receiving Part 2.

  108. Elzbieta June 23, 2015 at 5:45 pm - Reply

    Great article. Good to know what all these symptoms can indicate. Thanks Suzy for your work and keeping us informed about problems that even doctors don’t know how to help people.

  109. Elmer June 23, 2015 at 7:22 pm - Reply

    THank you so much Dr. Suzycohen for this detailed knowledge of Babesia. There are lots of people in my family and friends who are suffering and had the symptoms that you had enumerated. And after the medication it wont work and repeatedly suffered the same. I will be patiently waiting on your article part2. How to cure and what is the appropriate medicine to take. I am one of the followers on your website. You are a remarkable doctor who could help mankind.

  110. Nicole Lishinski Mackey June 23, 2015 at 11:23 pm - Reply

    I was dx with MS in late 2012. In tge summer of 2013 I began having severe air hunger issues. I was in and out of ERs, admitted to the hospital for a week on IV steroids, thinking it was MS related. I never completely healed and had another major month long episode this past February. Neuros are now saying it’s not MS related but every test I take comes up clear. I also had similar air hunger sensations as a child. I was dx with asthma then. But inhalers never worked and I was told during my “relapse” that my lungs are fine. I tested negative for lyme disease during my ms dx.

    • Suzy Cohen June 24, 2015 at 3:39 am - Reply

      Oh Nicole, I’m sorry to hear all this suffering. I really do understand. If it is related to Babesia, then your Lyme tests will be negative.

      • Scott Biller June 25, 2015 at 2:10 am - Reply

        I’m glad to read your comment about Babesia and the Lyme tests coming back negative. I was starting to question the accuracy of the test results that we received and am now treating the infection for my wife. Terrible to watch the frustration and very unsure of the direction we are going as many have different opinions and treatment plans.

  111. Rebecca June 24, 2015 at 2:01 pm - Reply

    I have Lyme, Bartonella and Babesia. Over 20 years of symptoms and misdiagnosis until 2 years ago. Sad part is that my Lyme test was positive, but it took them that many years to think of testing for it. My most recent symptoms all seem to be thyroid related. I do have a strong family history of Graves Disease and Hypothyroid so I was familiar with the symptoms. When I went to my GP he said I tested negative and refused to treat. So, my question is, Is it just Lyme or coinfection symptoms and my thyroid is fine, or is it really a thyroid dysfunction that can be treated with thyroid meds?

    I understand not taking meds if they’re not going to help, but when a patient comes to you with a list of complaints and you test for what you can and nothing “shows” itself, how do you just send them away and tell them they’re fine? I added natural thyroid support to my daily regimen of vitamins and abx (up to 15 pills, two tinctures, and a shot daily) and it seemed to help some, but not enough. I’m at the end of my rope.

    • Suzy Cohen June 25, 2015 at 1:57 am - Reply

      Hi Rebecca
      I really can’t tell from here what you’re dealing with but I know that Lyme and clan can attack the thyroid and cause Hashimoto’s disease (it’s very common). Many people with Lyme have Hashi too, but the Lyme tests come up negative because their immune system is to weak to show a positive. You should not have been sent away. Go to FunctionalMedicine.org and put in your zip code to try to find a doctor near you. I know there is help for you, I know if you hold on and find a good doctor that is caring and listens to you, that you will have your day in the sun. You do have a copy of my Thyroid Healthy book right because that has all the levels and ways to interpret your test results. If not, click on shop tab above.

  112. Lizzie June 24, 2015 at 10:08 pm - Reply

    I just posted your informative article on Babesia on my FB Lyme support group ‘Lyme Expressions And Fellowship – LEAF.’

    I never knew how to explain a sensation I get on my feet at night until I read your “rubberband symptom” on the check list. I have had Babesia for many years and began experiencing what I call a thump sensation on the top of both my feet and recently I felt it on top of my toes. Sometimes I feel the thump on just one foot but many times both will feel the thump at the precise same time. Its a little creepy because it feels like a person is slapping my feet. It always wakes me up…very random. Is this the rubberband effect that Babesia causes? Thank you! Lizzie

  113. Stef Tasca June 24, 2015 at 11:09 pm - Reply

    For a year my doc swore I had Babesiosis, but the tests were negative. That is until he tested me for the Western strain, WA-1 Igg, Babisiosis Duncani. Most people are tested for the Eastern strain. Thank you for listing both.

  114. Sue June 25, 2015 at 2:20 am - Reply

    I’ve been sick for 7 yrs. I did test for babesia once. I couldn’t tolerate Mepron. Nothing really was even done after that. Recent test say I’m negative. I argue as to how babesia can just go away and am always ignored. I found it interesting that you mention Snp and ozone. I had three weeks of ozone back in March and use it at home. I did the 23 and me test. I just can’t make sense of it. I have mthfr, c667 if that right. We are broke after the ozone treatment and although I did feel better for about a month after, I am sick again. Please help us!!

  115. Ryan McWhorter June 25, 2015 at 3:27 am - Reply

    Great article….always appreciate your work. As a Functional Med.(not quite finished) doc I see a lot of Lyme and Co. here in Alabama. I’m amazed how the tertiary referrals centers are oblivious. I know they will come around, they are too smart not to listen to patients. The good news is treatment is working and the better news is your willingness to educate will bring educated patients to the doctors. Keep up the great work. You are a real champion in my book!

  116. Fabulous article! So interesting to read about the symptoms that look like anxiety and panic attacks.

    I’ve heard of a Lyme pyroluria/social anxiety connection and wonder if you know of a Babesia pyroluria/social anxiety connection?

    I’m sharing this with my community and look forward to part 2!

    I’d also love to interview you and have you share this valuable information on an upcoming Anxiety Summit?!

  117. Colin Massaroni June 26, 2015 at 6:08 pm - Reply

    I have been having headaches and dizziness every day. I need to get help with this. I have had lyme for 7 years. I would love to feel better already. I’ve spent so much trying to get better. I’m sick of working 7 jobs to pay for my meds. If you can help me with this that would be just awesome :). I can’t wait to read the second half of the article. Thanks so much!

    • Suzy Cohen June 27, 2015 at 12:28 am - Reply

      Hi Colin
      I’m sorry for your suffering. I know all about this. I wrote all about the ways you can reduce cytokines and inflammation in the head, and also about Lyme headaches. It is in my book, Headache Free, do you have a copy? If not, this could change your life. You can also use my search box for free, just put in key terms.

  118. Leslie Delrosso July 2, 2015 at 10:16 am - Reply

    Please email me treatment. My husband was diagnosed with Lyme 15 years ago, took antibiotic a for 1 year, then, stopped and used diet in combination with enzymes prescribed monthly by a blood micrologist who followed him for a year. It cleared. Very interested in being emailed your treatment. My daughter was bitten years ago and today, 28, she has odd symptoms. Thank you for sharing your knowledge.

  119. Valerie Homan July 4, 2015 at 4:49 pm - Reply

    Suzy- I can not thank you enough for this article, and look forward to receiving part 2!

  120. Lory July 7, 2015 at 7:15 pm - Reply

    Suzy- I would love to receive your part 2 of treating Babesia. I have just been diagnose with it. First, regular Lab corp blood work said no. My doctor then sent it to IGenix labs which does a more sensitive test. I had the Babesia fish (RNA) test, which doesn’t only test 2 strains but all strains of babesia. The only down fall is I don’t know what strain I have. But at least I know I have it and can start treating it. I also have Ulcerative Colitis and was wondering if Babesia can trigger Autioimmune problems.

  121. Carrie July 8, 2015 at 7:15 pm - Reply

    I have every single symptom you talked about in this blog and even after treatment I’m back up to falling down again, drenching sweats up to 70 symptoms again. It’s in my heart and has been for 4 yrs. I finally had a positive babesiosis smear 2 yrs ago after treatments then they shipped me to infectious disease dr who ran a different babesia test which came out negative. Very frustrating.
    Now my 24 yr old son is very sick with positive IgG IgM babesia and lyme. I have to find him a grant so he can have a chance at life. We both have horrible cognitive thinking short term memory loss like dementia. I just really need to find a way to get him a llmd. I spent life savings trying everything that didn’t work on me. I’m going to just let the disease kill me eventually. Tired of fighting doctors. These drs here are really worthless.

  122. jafo July 10, 2015 at 8:52 pm - Reply

    I cannot wait for part 2. I read this and almost started to cry. I can’t believe someone else can describe exactly what I feel and that there is a possible reason for it. Not just “peri-menopause”, “menopause”, and now “post menopause”….which is what I have been given as reasons since 2001. I was diagnosed with Lyme disease in May of 2001. Since then I have been diagnosed with Hypothyroidism, Lupus, Fibromyalgia, and now Hashimoto’s. Been prescribed three different types of medications for the thyroid, none of which made any difference in how I felt, along with hormonal creams, B12 shots, and so many other types of prescription meds (I never filled them) and came away so frustrated. I researched and finally ended up here. Please keep up the good work, and don’t ever limit your content based on a few opinions. Yes, I have brain fog and comprehension issues, but I will ask others for help understanding if I need to. I cannot thank you enough for all of your generous sharing of knowledge.

  123. GERT THORGERSEN July 18, 2015 at 3:27 am - Reply

    The first time I read about Lyme, I had to open the lexicon, and it showed up that it first got this name when it in 1975 was ‘discovered’ i USA. But in Europa we use other names as it there was discovered i 1913.
    Since in Denmark I was child I then always new it as “Skovflåten”, where Skov-flået = Forrest-tic.
    Around 20 years ago the leader for one of the political parties (she) then during a whole year totally was turned out by it.

  124. Kathy Kubler July 29, 2015 at 8:31 am - Reply

    Excellent Article!

  125. Kim July 31, 2015 at 4:20 am - Reply

    Excellent article Suzy. The cited resources are wonderful too.
    Per Dr. Marty Ross’ suggestions, the artemisinin should be pulsed or the body can build up an immunity to it–not sure if you agree. Malarone has been good for my daughter’s air hunger but I tend to agree with Dr. Schaller that the standard 3 pills a day is not enough. Salt and C, cuts parasite load big time as does 1/4 tsp. of Borax with 3 drops of certified food grade hydrogen peroxide in 4 cups of water sipped slowly throughout the day. Cysts and critters exit rapidly. It is really quite amazing.
    As soon as your part 2 is up, I too will post it the various groups that deal with Lyme

  126. Pauline August 4, 2015 at 1:30 am - Reply

    Suzy, my doctor told me yesterday he believes I have Lyme disease….just been so very. very sick…tonight I just experience this like what you describe as “air hunger” I was scared an panicky…I stepped outside to pray….this is very frightening…I didn’t believe when my doc said he believes I have Lyme….He plans on scheduling me with an infectious disease doc…to rule out or confirm Lyme….

    I want to go the natural route….I don’t want pharmaceuticals…. you said something about anti parasites.

    I have been an avid follower of Dr. Joseph Mercola and he spoke of this doctor who wrote a book on Lyme…I can’t recall his name….I should have this in 2 days.

    I also have Celiac Disease and suffer from post-concussive syndrome from an auto accident.

    I will pray to the Lord to guide me and help me through that suffocating feeling…what a terrible feeling.

    Can you advice me and when is your part two coming out

    Thank you,
    pauline

  127. Kelly August 5, 2015 at 1:11 am - Reply

    Hi
    Good article
    I was diagnosed two years ago with lyme went to infectious disease and he said I was fine after 1 round of doxyclycine each year.
    I was still having symptoms so my pcp put me on amoxicllin which helped with my dizziness but now this year I’m still showing active lyme as a current infection so she put me on generic ceftin and I still have memory loss and feel weird like altered sense of reality.
    I just want to be back to normal and trying to find lyme specialist that’s good or something that can take symptoms away.
    I was only tested for lyme and no coinfections.
    But this weird false sense of reality, occasional headaches and lack of energy is really affecting my job..any good doctors you know in ny or anything I can do ?

    • Suzy Cohen August 6, 2015 at 4:37 am - Reply

      There may be doctors listed on ilads.org I live in Colorado so I don’t know your area.

  128. Tim cusick August 8, 2015 at 1:16 am - Reply

    I have never tested positive for lyme. I have been given antibiotics four times for lyme. I have had three doctors, an expert in lyme, and an applied kinesiologist tell me I have some form of lyme….
    I spent 4 days an $,$$$ at the Mayo clinic and “here I stand in the same mud puddle as day one”…
    Our healthcare community is not having one of their better moments…

    Tim

    • Suzy Cohen August 8, 2015 at 3:06 pm - Reply

      We’ve been there done that. Isn’t it something?!

  129. Jodi Holmberg August 11, 2015 at 3:56 am - Reply

    I was diagnosed with Lyme’s disease in 1997 while I was pregnant with my son. Mayo clinic put me in the hospital loaded me up with penicillin and said I was better. Strange that my son is now allergic to penicillin, anyways 2014 I was not feeling well, went into the Dr. blood test came back positive for Lyme’s Again, they put on another antibiotic, few weeks later, went back into the Dr for a re check, drew more blood, this time they stated that I tested positive for the first test on Lyme’s but the 2nd part of the test showed negative so then they said I do not have it. Oh also in 2003 I had my first Grand Mal Seizure. At that time they just dismissed it and life went on. In 2008, I had my daughter 6 weeks premature, while holding her in the NICU at Mayo Clinic I had another seizure, they kept me in the hospital a couple days longer, sent me home and then I had another seizure at home. Guess after three seizures then they give you the diagnosis of Epilepsy and now I am on medication for Epilepsy. How nice it would be if the medical field actually figured out what I have and what is going on with me.

    • Suzy Cohen August 11, 2015 at 5:26 am - Reply

      Wow Jodi, you have been through a lot, you are on the right path though, thinking it is Lyme-based. I would ask the doctor if they can try some different antimicrobials, or study natural gentle ones. Of course ask what is right for you.

  130. Lenny Szubinski August 11, 2015 at 12:55 pm - Reply

    Thank you so much Suzy for all of this valuable info! You are a treasure! Suzy, do you know of any natural tick repellents that we can make and that really works?

    • Suzy Cohen August 11, 2015 at 3:47 pm - Reply

      There are some natural tick repellent products you can buy, I don’t have a recipe for one that you can make though.

  131. Sharon Hendris August 11, 2015 at 6:56 pm - Reply

    I have so many of these symptoms. Also Hypothyroid, and Mitral Valve Prolaspe. Look forward to reading the second segment of this article.

  132. Lisa August 11, 2015 at 7:56 pm - Reply

    Thank you for validating that having had lyme before, nothing prepared me for getting through or dealing with babesiosis. nail on the head with description of headaches, night sweats, mood, frequent panic attacks.

  133. Sally August 12, 2015 at 6:05 am - Reply

    There has been lots of success with ASEA. Google ASEA and Lyme disease and you will hear the many people recovering. Happy to help you recover your health.

    • Suzy Cohen August 12, 2015 at 3:17 pm - Reply

      Isn’t it just salt water? The ingredients on the $35 bottle say sodium chloride and water, that’s just salt water. Some of my readers have complained that it’s expensive and it’s an MLM. How has it changed your life. Are you part of the company?

  134. Virginia Quiroz August 12, 2015 at 7:07 am - Reply

    Muy agradecida por su Informacion

  135. Jenny August 13, 2015 at 8:50 pm - Reply

    Hi Suzy
    What do think about Bioresonance machines from Germany to treat Lyme, and other parasites/infections? I’ve heard that there are over 7,000 machines in Germany being used by doctors. I just can’t comprehend how the machine works.

    Thank you

    • Suzy Cohen August 14, 2015 at 5:01 pm - Reply

      My friend bought one of those in Germany for about $8,000.
      I have this one and I use it on everything: http://www.sota.com/lightworks.html
      I have the extra paddles in different colors too. Love it, but don’t know how it compares to the Bioresonance machine in Germany.

      • Cindy Henson September 2, 2015 at 11:44 pm - Reply

        Are the bioresonance machines comparable to Hulda Clark’s “zappers”? I followed the anti parasitic clease, use a water ozonator and have been considering getting a zapper.

        • Suzy Cohen September 8, 2015 at 5:35 pm - Reply

          I don’t know how they compare. I like those types of machines though, and would certainly support options like this.

  136. Carie August 14, 2015 at 2:17 am - Reply

    Suzy, did you see this about RMSF? What a sad story! What could be done to prevent this? Tick bites are so common around here…
    http://fox4kc.com/2015/08/13/woman-loses-arms-legs-after-tick-bite-it-was-crawling-up-her-limbs/

    • Suzy Cohen August 14, 2015 at 5:05 pm - Reply

      I just read the story and gave her family a donation.
      So sad OMG 🙁

  137. matt August 14, 2015 at 2:45 am - Reply

    Hi Suzy
    thanks for the article. I have lyme. Babs and bart and Mycoplasma.

    I just got my labs and it was confirmed. i pretty much knew though. Lots of muscle testing,. Darkfield The last 3 years while i.ve been treating with various herbs, detox, charcoal, gut protocols. Rife etc

    Can u tell me which snp doesnt go well with ozone?. I.ve been doing alot of ozone and it initially made me feel well. But now my brain has completely turned off. I cant feel pleasure, joy sadness., libido, motivation I.m totally numb. Its the worst feeling imaginable. Drugs have no effect.

    This has been an issue since the beginning of my sickness. I.ve been thru hell and back physically but have most under control except for the one thing that means the most to me
    my soul, emotions, feelings. Cognition is ok. But i.m a zombie inside.

    I was doing much better but its really got a hold of me Now. The first 10 treatment of ozone my brain felt so good. The last 2 however brought it all on. I.ve been stuck for 30 days Now. Would rather be dead then to lose myself Like this.

    I have my genetic mutations report. There are Lots of them

    would like to know which one ur referring to Regarding ozone. I know it will b in part 2 but i really cant wait. If u could please advise it would be so much appreciated.

    Thanks so much
    Matt

  138. Alice August 14, 2015 at 8:47 pm - Reply

    I have half of the symptoms listed here. They have been “building” over the past 10 years. Is babesia a condition that only lasts a few months, or can it stay around for years? I have been to several different doctors with no real answer. I have found I am gluten sensitive, and have a mild hormone imbalance. I have been maintaining these for the past two years. I have had varying degrees (hah) of “hot flashes”- form just being warmer than usual, hot spots, sweats, full- blown waves of heat and sweats for days, GI issues, tinnitus, heart palps, insomnia, slight air hunger (like I can’t get deep enough breath), concentration, and memory loss.
    I have an appointment with my doctor to test for it now that a friend came across your article.

    I am tired.

    • Suzy Cohen August 15, 2015 at 5:28 am - Reply

      Oh my gosh I totally understand! It can get better, please know that. Please read Part II coming out tomorrow. There are treatments and herbs, and medicines that might help.

      • Alice August 17, 2015 at 6:58 pm - Reply

        I just read over it. I hope when I get the results there IS something there!!
        I am worried that if nothing is found, what else can I do?
        Thanks!

  139. Lisa Clark August 22, 2015 at 2:38 pm - Reply

    I have been going back and forth to my doctor & other doctors for some of the symptoms you mention. I had my dr check for Lyme but it came back negative. I get many moments during the day I feel out of breath. I explain to my hubs it feels like I just went swimming or I can’t get aggod enough breath in no matter how deep I breathe. It will last for minutes up to an hour at a time. My hot flashes have been getting worse even though they say I have 5-10 yrs to go before menopause.
    I get horrible sinus headaches pressure. I can never stay asleep and anyone forbid I eat the wrong thing..bad acid reflux. I have fatigue and at times certain body parts will get hot just out of the blue. One dr chalked it up to being obese. I am 30 lbs overweight!!! Another dr laughed as I spoke to him and put me on muscle relaxers. Said I was prob feeling more pain due to not getting enough sleep. My primary do tor wouldn’t even email me back on his own when my Vit D level came back at 15. I had to email him. I finally got a 2nd opinion and my new nurse practitioner put me on a higher dose of Vit D and I feel a bit better with fatigue. I am at wits end and feel my dr thinks I’m a joke. I just wants answers.

  140. Mark February 2, 2016 at 6:05 am - Reply

    Has the part 2 been published? Great write-up on Babesia in part 1. Best towards your husband. Regards, Mark.

  141. Kathy February 3, 2016 at 6:06 pm - Reply

    Hello I signed up for your newsletter but am looking forward to reading part 2. I have Hashimoto’s and been getting that under control holistically, but also lymes and babesia which I attribute most of my symptoms to.

  142. Vickie Manger February 23, 2016 at 10:20 pm - Reply

    I am unable to locate part 2 of the Babesia series on your website. Did you ever post it?

  143. seo fiverr March 2, 2016 at 3:38 pm - Reply

    Thanks for the article post.Really looking forward to read more. Keep writing.

  144. […] Coinfections: Babesia by Suzy Cohen, May 29, 2015 […]

  145. Carol March 18, 2016 at 4:44 pm - Reply

    omg. I know I have Lyme – probably had it most of my life. But this article makes me suspect Babesia as well (not tested for co-infections). I well remember awful night sweats in my late 20s and early 30s. Cardiac symptoms have always been my main problem. Your final paragraphs about what you are likely to be diagnosed with and how you are likely to be treated are 100% accurate. You could have been writing about me.

  146. kimberly harper March 23, 2016 at 1:21 am - Reply

    If anyone is in Florida, there’s only 1 Dr who can get rid of lyme and confections. He diagnosed me 5 yrs ago thru autonomic reponse testing but I didn’t believe him as I was just really getting into holistic medicine. I finally found a functional MD who gave me the ispot test last year. ..it came back positive! If I had only trusted him 5 yrs ago I would have been soo much better off. The problem with lyme is, you have to get rid of all the other bacteria, viruses,mold, heavy metals or parasites first otherwise it hides in them. It is the great mimicker. It’s been a 6 mos process to systematically get rid of mold and several parasites and bacteria first, then attack the lyme. I am now trying to heal my organs and body from the damage that was done by this evil bacteria.

    • Stacy March 28, 2016 at 5:36 pm - Reply

      Hi Kimberly,

      I currently live in Florida, and am in need of a good doctor for Lyme. Can you please send me the information for the MD that you used? I have been having problems for over two years and am ready to get my life back. Your post gives me some hope. I would appreciate any advice you have.

      Thank you!

      • Suzy Cohen March 31, 2016 at 5:43 pm - Reply

        I hate to see you throw your money away like I did.
        Sam and I moved from Florida to Colorado, in part for better health care. There were no doctors there for Lyme that were affordable, or could give us the name of one single patient who was cured.
        You can skype most of them dear, it’s easy and you don’t have to travel. Just call the office of any Lyme doctor you like and ask to schedule a Skype consult, you might get lucky.
        Lyme isn’t always a correct diagnosis okay, you may or may not have it. The testing is often wrong.

  147. Kerri April 7, 2016 at 6:34 pm - Reply

    Great article !!

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