I’ve tried everything for rheumatoid arthritis, and I’m still disabled, worse now than several years ago. I’ve spent thousands on Enbrel, Humira, Remicade and Cytoxan. Any advice?”
–S.C., Miami, Florida
Answer: I’m sorry for your anguish and expense. Because you’re “worse now” I question your diagnosis.
With the exception of the immunosuppressive chemo drug Cytoxan, the other three medications you tried are self-injected DMARDs, for “disease-modifying anti-rheumatic drugs.” They relieve joint inflammation and damage and usually help people with RA, severe psoriasis, psoriatic arthritis or ankylosing spondylitis. All the meds work by suppressing your immune system which explains their side effect of increased frequency of infections. Now, if you have an auto-immune disease (and rheumatoid arthritis is thought to be an auto-immune disease) then DMARDs are reasonable, because they calm the hyperactive immune response. This is why most people with true RA respond. But what about the non-responders to medication, like yourself, the ones who get worse? What if all that swelling, tenderness, pain, deformity and reduced range of motion was not truly RA? For some of you, those RA symptoms may be driven by a Lyme-related organism called Bartonella, and suppressing your immune system is precisely the wrong thing to do because it worsens symptoms. With infections, one needs to rev immune function, not smack it down. Suppressing your immune system allows the bugs to have a wild party in you, which means pain and swelling.
Bartonella is best known to cause “cat scratch fever.” Infections cause chronic fatigue, joint pain, rheumatoid-like symptoms as well as anxiety, agitation, seizures, psychosis, bipolar, panic and other mental/cognitive problems. Bartonella is considered a Lyme co-infection organism and is transmitted by ticks, fleas or bites and scratches from cats or dogs. A study published in the May 2012 issue of Emerging Infectious Diseases sampled 296 patients. Of those, 62 percent had antibodies to Bartonella and 41 percent had remnants of bacterial DNA from the organism strongly indicating that exposure to Bartonella is associated with RA. The researchers stated “However, our results thus far do implicate Bartonella as a factor in at least some cases. If the link between Bartonella and rheumatoid illnesses is valid, it may also open up more directed treatment options for patients with rheumatoid illnesses.” What they mean by “directed treatment options” is antibiotics that kill this bug. The specific offending Bartonella organisms include B. henselae, B. kohlerae and B. vinsonii subsp. berkhoffii.
Testing for Lyme disease is a huge challenge because the germ’s DNA sequences in Western blot tests (termed “bands”) are not tested for properly. Bands associated with Lyme germs that are commonly found in the blood of a Lyme patient will hardly ever show up using conventional labs which detect only a few bands, that Lyme patients don’t usually have. What a horror. This medical horror has left millions of people with Lyme thinking they do not have it, when they do. This is because the government has not corrected the problem. You see, there used to be a vaccine for Lyme that injected proteins into you (think of them as dead bands because they were not really living germs). The goal was to desensitize you to Lyme germs, should you come into contact with it. They didn’t want everyone and their brother in the population to come up positive for Lyme (when they didn’t have it) because the vaccine was being offered publicly. The lyme vaccine was eventually discontinued but the laboratories still do not test for Lyme properly.
If this is confusing, hang on, because there’s the issue of false positives and false negatives! Oy, I don’t know why science has to be so complicated. For general lyme testing, I would use Igenex Labs or Fry Labs because other labs commonly produce false negatives, thus prolonging your suffering.
Since the focus of my article pertains to Bartonella or “Bart” for short, as a cause of Rheumatoid, I would actually recommend using Galaxy Labs, I think they have state-of-the-art equipment, and they use a patented enrichment culture to significantly increase odds of detection of Bartonella species. Most other labs will miss this bug. Truly, I think they have an incredibly innovative way to test for Bart so if you have Bart symptoms, including arthritis, use them. Other Bart symptoms include a variety of brain, cognitive and neurological symptoms, pain on the bottom of your foot or feet, muscle twitches and brain fog.
I almost always recommend Igenex Labs, but Galaxy Labs has a very high rate of accuracy when it comes to testing Bart. It’s not 100% because the germ has to be present in the blood they test… unfortunately Bart doesn’t always hang out in the blood. Galaxy Labs offers a single blood test, and also one that requires 3 samples, drawn on 3 separate days. I’ve seen the kit, and even tested a friend. I have to say the instructions are easy as pie, you just need to find a lab to get your blood drawn. Same thing with Igenex.
Physicians should diagnose you based upon symptoms, your failure to respond to standard RA treatment, Galaxy, Igenex or Fry lab results, elevated blood levels of “VEGF” which Bartonella microbes produce. One other thing. If your doctor says to you that your Lyme test produced a “false positive” based upon a positive IgM response then he/she is wrong. People with active long-standing Lyme commonly produce IgM antibodies, and that means the infection is active. Listen carefully. It has re-awakened itself. Practitioners, and sadly even top-notch infectious disease specialists who are not literate in Lyme mistakenly assume that a finding of a positive IgM is irrelevant and it’s not! Have them look up the term “epitope switching” or “antigenic variation” which explains why an IgM finding is confirmation for Lyme. It basically means that the germ’s protein sequence has switched, and the germ is alive and well in you. Your immune system gets tricked because it sees the new protein sequence (on the same old bug) as a new infection, so you get a positive IgM western blot (which again, most doctors brush off), but this means that the germ is still in there, it’s flipping its proteins around and it’s an active infection. The doctors are looking for a positive IgG, not IgM, so they tell you to ignore it. Do not accept “You’re okay, that’s a false positive.”
Antimicrobials (herbal or prescribed) help eradicate the organism. The topic of treating Lyme and Bartonella co-infections could fill a book! There are many authors who have already addressed this topic. I can tell you that pharmaceutically-speaking, the drug Rifampin is particularly good at treating Bart, but it does require a prescription. If you get it, brace yourself for a herx, a very common reaction to cytokines produced when germs die off.
Suzy Cohen, has been a licensed pharmacist for over 30 years and believes the best approach to chronic illness is a combination of natural medicine and conventional. She founded her own dietary supplement company specializing in custom-formulas, some of which have patents. With a special focus on functional medicine, thyroid health and drug nutrient depletion, Suzy is the author of several related books including Thyroid Healthy, Drug Muggers, Diabetes Without Drugs, and a nationally syndicated column.