Madison Area Lyme Support Group

https://experiencelife.lifetime.life/article/a-new-look-at-chronic-lyme/

• Weintrub highlights Jennifer Crystal’s story which mimics many other patients
• Unfortunately, the article regurgitates the notion that only up to 20% experience chronic symptoms when the number is more like 60%
• Weintraub explains that historically LLMD’s used high doses of antibiotics/antimalarials in harsh regimens lasting months or years but due to grueling side effects have adopted a multi-pronged approach that combines the judicious use of drugs which includes natural therapies
• The article also erroneously blames rising temperatures for tick expansion when independent research has shown this to be false
• The reason infections are reported in every state but Hawaii and Oklahoma has to do with migrating birds, reptiles, and mammals – including humans.
• Weintraub explains the difference between the “two types” of Lyme disease: the acute, straight-forward cases, and those who remain sick after standard treatment, who are typically diagnosed late, and who have more than one infection – which research confirms who are as impaired as those with congestive heart failure and sicker than type 2 diabetics, and who have a striking degree of neuro-inflammation
• Unfortunately, this second group which suffers greatly with chronic infections is still gas-lit by physicians who would rather label them with chronic fatigue or fibromyalgia and give them “scattershot” treatment
• The article then goes into the big problem with faulty Lyme testing which can not register antibodies for 6 weeks, miss a significant subset of people who will always remain seronegative, that can not register certain strains of borrelia, or pick up the organism which lies dormant within tissues.
• Despite a CDC disclaimer, many doctors still rely on the faulty CDC surveillance case definition which requires a positive test or the EM rash, when many will never test positive and many never get a rash.
• I was thankful for Dr. Maloney who states an early course of antibiotics does NOT eliminate the risk for chronic Lyme
• The article then delves into the fact many patients are infected with way more than just Lyme
• Researchers that previously doubted that Bartonella could be spread by ticks are changing their position as there is now strong circumstantial evidence
• The article points out that research has identified “persister cells” which are antibiotic tolerate and generally unresponsive to drugs as well as biofilms which work to protect infectious organisms, also making it hard to eliminate them
• Stanford researchers have exposed persister forms (in vitro) to more than 4,000 drugs to observe effectiveness which has resulted in the use of disulfiram/Antabuse, an old drug for use for alcoholism but is potent against Lyme disease (but can cause severe side-effects in some)
• Dr. Zhang has tested lyme-containing biofilms (in vitro) using antibiotics and herbs and has found that Japanese knotweed, black walnut, sweet wormwood, and Ghanaian quinine are all effective against Lyme disease.
• Dr. Horowitz has found that a 2-month course of dapsone combined with biofilm buster rifampin has helped almost half of his chronically ill patients return to health. One patient accidentally took quadruple the dose for 4 days which put her into full remission – another example of how dosage matters.  A few other patients used this approach with similar success leading Horowitz away from long-term antibiotics to hitting hard for several days 3-4 times a year
• Dr. Kinderlehrer reports that a formerly straightforward infection has morphed into body-wide instability: extreme sensitivities to foods, mold, chemicals, activation of mast cells, and dangerous allergic reactions, which can trigger brain fog, mood problems, pain syndromes, and profound fatigue.
• A suppressed immune system can reactivate other infections like EBV
• Integrative doctor Erica Lehman’s experience has taught her to recognize the different between those with neurologic disease versus illness that hits the gut, endodrine system, joint tissues, etc.
• Many of the doctors who specialize in chronic Lyme do so because they have gone through it themselves

I highly, highly recommend Weintraub’s 2008 book “Cure Unknown: Inside the Lyme Epidemic.”  Although it was written 14 years ago, it remains one of the most thorough, accurate accounts of the Lyme debacle and clearly demonstrates that little has changed.

She also wrote about Dr. Masters the Rebel for Lyme Patients Who Took on the CDC Single-handedly  and broke it down into four parts in Psychology Today and which I summarize in the link. This history must not be lost. 

We must remember the fraud and corruption behind & in the world of Lyme/MSIDS.