Volume 1 FAQ

85 Total Items

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 1

I have a few patients who I really think should have low MSH levels given their insomnia and pain levels as well as chronicity of their illnesses, but LabCorp reports theirs as over 35. Are there circumstances that will cause a false elevation?

Answer

I suspect that we will be able to identify other important neuropeptides as the days go on. Years ago, all I knew about was MSH. Now that I know so much more about VIP, and especially use of VIP replacement, the importance of MSH is a bit diminished. As far as chronic pain, I am most interested in the finding of increased gene activation for markers on B cells of CD 21, CD 81, CD19, CD22 and CD5 in our chronic pain patients. When our next set of microRNA data comes back I will be sending validation samples out to NJC but the hypothesis today is that there is an immune basis for chronic pain that involves abnormal activation of B cells. The idea isn’t plausible at first glance but perhaps that means we need to know more what is plausible in this new world of genomics.

Question Volume 1

How long does it take for C4a and TGF beta to rise after re-exposure to mold? Is it on the order of minutes or hours?

Answer

For people sickened before and successfully treated, C4a will rise in blood in 4 hours following 15 minutes of exposure to ERMI > 2. It doesn’t take much… TGF beta will usually parallel C4a, but some patients, usually those with higher CD4+CD25++CD127 lo/-, don’t show the swings of TGF beta-1 that I see with C4a. As the “sicker, quicker” phenomenon (auto-activation of MASP2, the enzyme that splits C4) kicks in, some people will show measurable increases in C4a in as short as 60 minutes following 5 minutes of exposure. No kidding. Not common, but real nonetheless.

Question Volume 1

If a mold-susceptible person is being exposed to mold, how soon after stopping CSM will C4a begin to rise?

Answer

C4a goes up on day 1. Take a look at the two presentations on PP on the site on SAIIE.

Question Volume 1

I bought the PP, but am not clear on specifics of timing.   -Is the last dose of CSM taken the evening before day 1?   -What time are the baseline and follow-up labs draw?

Answer

Yes, the clock for HOC starts after the AC1 labs are drawn. No more CSM for three days, then draw for the HOC; re-enter the affected building for 8 hours on day 1, draw BOC-1 labs in AM of day 2. Re-enter on Day 2, draw BOC-2 on day 3 then re-enter for 8 hours on day 3. Draw BOC-3 on AM of day 4 and re-start CSM.

Question Volume 1

With the SAIIE, what are the criteria for determining when it can be run? Does the VCS or C4a have to be a certain level first?

Answer

Ideally, VCS and symptoms will equal controls after AC-1 to then go to SAIIE. Life isn’t ideal often so sometimes people will still have some residual symptoms before beginning the prospective trial.

Question Volume 1

Would using serial C4a’s (just the 1 week) be a good tool to nudging someone to run an ERMI or determining if mold remediation was successful. Many of my patients are reluctant to run an ERMI if they are Lyme WB+ even though I explain that mold could cause the same symptoms.

Answer

Makes sense as the results would be helpful, though delayed by the 4 weeks NJC takes to report the test. If you use the blood work, then I would suggest using the full SAIIE protocol, with sequential exposures off meds for three days measuring C4a, leptin, MMP9, VEGF, von Willebrand’s each day. TGF beta and CD4+CD25++CD127 lo/- have excellent roles here too.

Question Volume 1

Is a rise in TGF beta after one week of stopping CSM as specific and sensitive as a rise in C4a in determining mold re-exposure?

Answer

Excellent question. I have not looked at that as an answer. Seems easy enough to do.

Question Volume 1

When looking at serial C4a’s after stopping CSM, how much of a rise in C4a is considered significant?

Answer

If the C4a goes up over the levels following treatment that will meet criteria of arise. Seeing the levels double or triple isn’t unusual but when we did the SAIIE weighting system no one could agree that doubling was more important than just going up 10%.

Question Volume 1

When running serial C4a to help distinguish mold from Lyme, what is the rationale for waiting one week after baseline even though C4a will rise within one day of exposure to a WDB?

Answer

You can run C4a as often as you like. I give one week for ease of discussion as some people will only enter a church or a Post Office once a week, for example. The point is that I have never seen C3a negative patients convert to + in less than three weeks. Living Lyme organisms are themselves not necessarily biologically active.

Question Volume 1

Can you help me interpret the following labs? The patient had their work and home remediated and wanted to check the success through serial C4a and VEGF. Previous C4a’s have been over 20, 000 on 2 occasions.   Works Mon-Fri. Stopped mold binder Wednesday evening. Thursday morning: C4a 11309 / VEGF 149 Friday afternoon: C4a 2069 / VEGF 129 Tuesday morning: C4a 10277 / VEGF 142

Answer

A rise in the Thursday C4a needs to be compared to a prior baseline. If you choose ill before all Rx, then no, he gets no points for illness. Same for VEGF. I feel that including three days away from potentially affected home (“HOC”) adds a great deal to the evaluation. Seeing the yo-yo in C4a over time begs the question of other sources. The VEGF should rise on day 1 and fall on day 2 and 3. Didn’t obviously do that here.

Question Volume 1

I’ve been told that mold found in an attic is usually not a concern because most of it will vent to the outside and only a little will go into the house. What is your experience with attic mold?

Answer

There is a great deal of communication of air between attics and lower floors. I would not assume outdoor venting of all bioaerosols in an attic.