You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
I was told the LLMDs do not treat aggressively enough, because CO is extremely tough on any doctor who does. The medical board is relentless on them. Posters on Lymenet from CO recommend going out-of-state to see a LLMD.
When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.
posted
I was diagnosed in 2008 with 100% specificity by CDC and iGeneX criteria for B. burgdorferi (IgM and IgG western blots for B. burgdorferi; and DNA testing for Babesia) after having been infected for probably 28 years (bands 31 & 34 together indicate long-term infection, and I had plenty of other relevant, positive bands).
I read the first edition of Cure Unknown and watched the original version of Under Our Skin. So at the time, I thought chronic Lyme disease was curable. I now know that it is incurable, and have received email from Drs. Burrascano, Dr. L, etc. agreeing with that assessment. Upon diagnosis, I was treated by an LLMD with several oral antimicrobials for Lyme, bartonellosis, babesiosis, etc. for six months, without progress.
Then I was treated with two iv antibiotics as well as oral antimicrobials for a year, experiencing severe herxing the majority of the time. My health was utterly destroyed because I experienced such severe herxing for so long. I have barely been able to survive for years because of the damage caused by the herx-like reaction.
And I know of several patients who had similar experiences. Lyme symptoms, in large part, are caused by chronic over-activation of inflammatory components of the immune response. This causes a form of neurotoxicity known as excitotoxicity. Aside from destroying neurons, excitotoxicity has a devastating cascade of downstream effects, including high levels of oxidative stress and severe dysregulation of the adaptive immune response.
For instance, it causes CD8+ cytotoxic T cells that are supposed to destroy intracellular infections to become deactivated after traveling to the site of infection. Because those lympphocytes are deactivated only when they reach their target site, standard serological markers of lymphocytes don't reveal that the CD8+ T lymphocytes detected in a blood sample will become deactivated when they reach the infected target site. Recent research has also revealed that in mice, the IgG antibody response to B. burgdorferi and any simultaneous coinfections is severely downregulated, preventing the adaptive immune system from mounting an effective attack against both extracellular and intracellular infections (since antibodies assist lymphocytes that attack extracellular and intracellular infection).
This is likely why most patients with long-term Lyme disease don't exhibit much of an IgG antibody response, while constantly mounting a less effective IgM antibody response because B. burgdorferi uses antigenic variation to evade IgG antibodies. When B. burgdorferi stops expressing an outer surface antigen and begins expressing a different antigen, the immune system mounts a new IgM antibody response, as if a new infection were present. A continuing IgM antibody response is far less effective than a functional IgG antibody response. A properly functioning IgG antibody response results in incomparably greater proliferation of lymphocytes that produce far less inflammatory signaling. The herx-like reaction is caused by exacerbation of the inflammatory immune response that fuels excitotoxicity, because the immune system responds with increased inflammation when B. burgdorferi is lysed (killed and dissolves). The more you herx, the less likely you are to improve.
It's possible to experience short-term herxing and to improve if the microbial load isn't too high, although other factors are likely at play as well. But if somebody experiences ongoing, severe herxing for six weeks, he or she (as a general rule) is only going to continue to deteriorate by letting severe herxing continue. I haven't read the second edition of Cure Unknown, and I haven't seen the revised version of Under Our Skin. But despite being well-intentioned, the original versions were factually inaccurate. Even the most experienced Lyme doctors (mentioned above) don't know of a single patient who was cured of chronic Lyme disease. I'd run fast from any LLMD who believes chronic Lyme is curable, and also from any LLMD who doesn't realize that the herx-like reaction (beyond a few rounds of herxing with steady reduction in intensity from the very start) is more dangerous than the illness itself.
Of course, the IDSA is a mafia, and is ultimately responsible for the epidemic we are experiencing. But the IDSA's opponents often have blinders on when it comes to the dangers of aggressive antimicrobial treatment for patients who experience severe, prolonged herxing. All generalizations have their exceptions, so someone who herxed heavily for a few months but eventually improved may respond to say I'm wrong. But I don't know of anybody who herxed severely, deteriorating the entire time for more than three or four months, who didn't suffer long-term damage.
I just hope patients who have been ill long-term and are recently diagnosed don't develop unrealistic expectations of cure, and especially don't believe any LLMD who tells them that herxing is a sign of progress, even if it's severe and goes on long-term. I'd also run fast from any LLMD who claims a high success rate.
Making that claim misleads many chronic Lyme patients into believing they can be cured. That is outright false, and only a very inexperienced LLMD, or an experienced but disingenuous LLMD, would make such a claim.
I'm too ill to reply to responses to my posting, but I hope it prevents others from having their lives destroyed far more by reckless treatment than by the illness itself.
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