Lyme FAQ
13 Total Items
Question Volume 1
If someone presents with +VCS, + labs, multisusceptible haplotype, and Lyme WB falsely negative and I treat presumptively as mold with CSM, can the VCS, C4a, and symptoms still improve? If so, are there any clues to the undetected Lyme?
Answer
A priori, how do we know the WB is falsely negative? There is great argument about use of antibody testing in Lyme and if used, which labs? One might ask if I have a Lyme patient, can I treat successfully without antibiotics. NO! Look for elevated C3a at baseline to help sort Lyme (will have elevated C3a) from mold (won’t have high C3a). I don’t use procalcitonin BTW, as some have advocated, as it is negative in most of my Lyme patients. Those with no recollection of a tick bite, no ECM, low C3a, low C4a and neg WB that have Lyme are rare, but they do exist. There are times you just don’t know. The best approach is due diligence in differential diagnosis. If VCS is not improving with CSM like it should, challenge the diagnosis you have made.Question Volume 1
If someone presents with +VCS, + labs, multisusceptible haplotype, Lyme WB positive, and negative home ERMI, but undetected mold exposure at work and I treat presumptively as Lyme with antibiotics then CSM/Actos, can the VCS, C4a, and symptoms still improve? If so, are there any clues to the undetected mold?
Answer
Yes, the CSM will help both Lyme and mold. The best clue to ongoing occult mold exposure will be rapid reacquisition of illness after CSM is stopped.Question Volume 1
Have you ever seen a case of post-Lyme with a normal C4a?
Answer
Yes, especially if the nasal culture is positive.Question Volume 1
Can you clarify how to distinguish mold from post-Lyme? If I understood the video correctly, you’d treat Lyme with antibiotics then CSM/Actos then check the C4a. Stop CSM/Actos then recheck C4a in one week then again in one month. If C4a rises in one week, then there’s a mold exposure. If C4a rises in one month, then Lyme persists. Is this correct?
Answer
Measure C3a and C4a at each step. After antibiotics, after CSM/Actos. Continue with CSM until VCS normal and symptom nadir reached. Then stop meds and measure C3a and C4a in one week. Relapse is mold driven. If no change, continue off meds for three more weeks. If C3 and C4a both bump, you have Lyme for sure. If only C4a, it usually is mold but there is more doubt.Question Volume 1
If a multi susceptible patient is Lyme WB and C3a negative and you treat as mold without a reaction to CSM, are there any clinical clues that would prompt you to suspect Lyme and therefore go through the process of serial C4a’s as previously described?
Answer
No. If history has nothing consistent with Lyme and lab has nothing consistent with Lyme then I would let the idea rest. The genomics assays however, should shed much more sophisticated light on this subject. I have a talk in Tampa in January, 2012 on the proteogenomics of Lyme (PowerPoint in the website).Question Volume 1
After treating post-Lyme patients with antibiotics, CSM, and Actos, do you always run serial C4a’s to assess the need for prolonged antibiotics or are there clinical clues that you look for?
Answer
After the patient is clinically well, no I don’t always do serial C4a testing. The patients must have the other arms of the protocols fixed as well if they are still symptomatic. In that case I do get the serial C4a testing to be on the safe side.Question Volume 1
I have been treating Lyme without knowing how to address the inflammatory dysregulation. So I am trying to get help in transitioning people from the way I had treated to the way you do. Your approach is far more appealing at many levels. When someone has been treated and is OFF antibiotics, how long after finishing antibiotics can I do the Actos/CSM? I am not sure if I should bind biotoxins or re-treat the Lyme in those who have been treated but continue to have some symptoms.
Answer
I start right in on Actos, no-amylose diet and CSM protocol after antibiotics done. Monitor VCS, labs, especially C4a by RIA, TGF beta-1. Follow VCS to help you decide how long to stay on CSM.Question Volume 1
While I agree with you that it is best not to make assumptions, I am not certain how one avoids it in treating Lyme. If biotoxins inhibit antigen presentation and therefore antibody production, what criteria do you use?
Answer
The differential diagnosis of Lyme should include absence of confounders, exposure, biologically consistent illness after exposure. While absence of bite, ECM, flu-like illness and Western blot are not fatal to a putative diagnosis of Lyme, in such absence the record must be impeccable. There is no room for “clinical diagnosis” of co-infections, for example. Look for C3a, C4a and MMP9 to be up; ERMI low.Question Volume 1
Bartonella? How you decide whether to treat? I have had only ONE person test positive. It is definitely present in my area.
Answer
I will test for Bartonella, understanding that as many as 28 species might be pathogenic in dogs. I see no good diagnostic tests as yet. VEGF and striae are no help in my cohorts.Question Volume 1
Chlamydia pneumonia and Mycoplasma – do you address them? I notice you do not rule them out. Are they simply opportunists that resolve as the innate immune system kicks back in?
Answer
I am not familiar with toxins made by Chlamydia or Mycoplasma. We have decent 4-fold rises in antibody titers to use for acute illness but using antibodies to decide to treat chronic illness is untenable.Question Volume 1
I have many patients with chronic fatigue, probable Lyme that did not resolve with treatment, etc. These patients are quite sick, with many of the symptoms of CIRS. The VCS testing is coming back abnormal on all of them, and the HLA DR shows multisusceptible, mold and post Lyme on these patients. Everyone so far has low MSH also. However, all the other labs, including C4a and C3a (Quest), TGFB1, VEGF, VIP, MMP9 are all normal (except a few high VIP and high VEGF). Without an elevated C4a, is the diagnosis still correct of biotoxin illness / CIRS? I haven’t gotten ERMI’s done or back yet, and the few patients I’ve started on cholestyramine are having a hard time tolerating it, even with the fish oil pretreatment. I want to make sure I am on solid ground with this diagnosis. Am I ordering the tests wrong? I used the labs that are suggested on your lab order sheet.
Answer
I hope you are looking at the nasal cultures from Diagnostic Lab Medicine (781-275- 0855, ask for Vicki to get an account set up) too. We see suppression of C4a and TGF beta-1 in many with abundant biofilm formation of multiply antibiotic resistant coag neg staphs. But I would be surprised to find no one had high C4a and/or high TGF beta-1. There is a learning curve for use of CSM. Four times a day can be difficult to start, so ramping up from one scoop a day is key for some. Make sure the diagnosis of Lyme is confirmed beyond just an Igenex test. Welchol 625 working up to 2 tabs TID is an acceptable substitute for CSM for the really hard hit people who are just too weakened to take CSM at first.Question Volume 1
Question about a case: A multisusceptible (11-3-52B/ 7-2-53) patient with Lyme by Quest Western Blot. Declined to do ERMI. Initial C4a was 7340. Treated with doxy then CSM/Actos. Tried serial C4a to look for mold. First C4a was 84000 on CSM. After one week off CSM, was 64000. Is there any useful information I can get from the results?
Answer
When patients are unwilling to spend money for ERMI that should be a tip off about their dedication to your protocol. Be careful with lab analysis in that levels of 84,000 and 64,000 are usually not reliable.Question Volume 3
I was treated with doxycycline prophylaxis for two weeks following a tick bite. I then had exposure to a water-damaged home several days later which resulted in a rapid recurrence of my health symptoms. The symptoms were identical with what I felt with Lyme. Could being in a mold damaged building cause these symptoms? Please note I am back on doxycycline for nine weeks with no improvement. All tests for Lyme and co-infections are negative.
Answer
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