[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.
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).
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.
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!
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.
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