Week of May 15, 2023
Spring brings up another popular CIRS-related topic… Lyme Disease. We included a sampling of the Q&As received on the topic below.
**Be sure to check out the Surviving Mold Lyme information and resources included for you following the Q&A section below.**
1/ Mold versus Lyme
QUESTION: I have HLA types that are both mold and post-Lyme susceptible. How do I confirm I do not have Lyme disease? I am taking CSM; my VCS has improved to negative.
ANSWER: The distinction between mold and Lyme can be difficult. The CDC suggests making a clinical diagnosis of Lyme disease which in turn suggests to some that presence of a
multi-symptom illness is a reasonable parameter to use for diagnosis. Unfortunately, there is no difference between symptoms of Post-Lyme and mold; further, there is no difference between these groups of symptoms and those found in illness acquired following exposure to toxigenic dinoflagellates and cyanobacteria. Symptoms won’t separate mold and Lyme.
Newly created objective studies are our best bet to separate mold and Post-Lyme with genomics and the NeuroQuant test leading the way. These two techniques give a distinct fingerprint for both Lyme and mold.
Blood tests focus on the presence of elevated C3a in Lyme but not in mold. A high C3a indicates presence of a bacterial membrane in blood that supports attachment of additional elements of the complement cascade. What this means is that high C3a occurs very often in Lyme but hardly ever in mold. High C4a can be elevated in both these conditions.
Be sure to check out the resources and information included below about NeuroQuant, a Post-Lyme Symptom Roster, and more.
2/ Lyme versus mold testing, NeuroQuant
QUESTION: I am being treated by a Lyme literate physician in Northern Virginia. I have multiple lab abnormalities with extremely high C4a but normal C3a. TGF beta-1 is somewhat elevated. My daughter also has elevated C4a and very high TGF beta-1.
Our symptoms are worse since we moved into the home but we had tick bites preceding that in 2005. Any suggestions for testing?
ANSWER: Available as a free download on this website is the paper on use of C3a and C4a in diagnosis of Lyme disease our group published. This paper was written with the heads of the complement laboratory facilities of National Jewish Center in Denver and also
Quest Diagnostics in California. We showed conclusively that presence of C3a, indicating a bacterial membrane present in blood serving as a platform to cause the splitting of C3 to make C3a, is present in acute Lyme. Absence of a bacterial membrane
will not give elevated C3a. Rarely, untreated Lyme of more than 6 months duration will give a + C3a.
Elevated C4a is quite common in both mold, treatment naïve Lyme as well as Post Lyme Syndrome but high C3a helps to distinguish Lyme from mold. An additional method of identifying Lyme disease is with the use of NeuroQuant. Now that this FDA-cleared volumetric program can be added for a low cost to MRI of the brain, we have been able to show a distinctive fingerprint of Lyme as well as a distinctive fingerprint for mold but each fingerprint is different from one to the other. What this means is that 10 minutes of MRI time has now shown the ability to separate mold from
Lyme.
The Surviving Mold online NeuroQuant Analysis can interpret your NQ for mold points, Lyme points, and more.
If your physician can draw a PAXgene tube there is a genomic fingerprint for Lyme versus mold available on a research basis.
I would strongly recommend that you have appropriate environmental testing done, either ERMI or HERTSMI-2, of your home to confirm whether or not the home is safe for you.
Given the lab abnormalities and the possibility that mold contributes to your illness, there is no question that you must be removed from any environment that has evidence of excessive fungal DNA.
3/ Tick bite
QUESTION: 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: In your history you said that you were treated prophylactically for a tick bite. Did you actually have Lyme? If so at least three weeks of oral antibiotics is my standard. Please take a look at the roster of Post-Lyme symptoms listed on this website of patients who have had Post-Lyme syndrome compared to those patients with CIRS from mold or from ciguatera or from blue green algae (cyanobacteria). There is no statistical difference among any of
these cohorts regarding their symptoms. Trying to diagnose Lyme based on symptoms is illogical at best when there are so many other elements that could create the illness symptoms.
In our repetitive exposure trials (SAIIE) where we have to deliberately re-expose patients to water-damaged buildings (WDB) in controlled situations to prove causation, we will see onset of symptoms within the first few minutes of being exposed to the interior environment of water-damaged buildings with a steady march of symptoms after day 1, day 2 and day 3 of exposure such that by the end of the third day, the symptoms have been reproduced to a degree equal to 95% of baseline symptoms. Once primed by Lyme or any other significant inflammatory process if you have a CIRS from WDB you are
more likely than not to become sickened following short-term exposure to a WDB.
I would hope that your physician would obtain the testing process and labs we routinely implement when following the Shoemaker Protocol™ to look for evidence of symptoms due to exposure to water-damaged buildings. If there is CIRS present, as I suspect, then please use appropriate treatment protocols for that condition. Once you are improved then you can look back on this case and see if you need to do a repetitive exposure trial or not.
Initial steps of the Shoemaker Protocol™ testing pathway include first determining if your home or a building you frequent has water-intrusion damage with ERMI/HERTSMI-2 sampling.
The next step is to screen your symptoms and visual contrast sensitivity with the Surviving Mold online VCS screening test. While the test will not directly show you which version of CIRS you could have, it will provide valuable information for your practitioner to continue your Shoemaker Protocol ™ diagnosis process.
4/ Lyme disease
QUESTION: What is Dr. Shoemaker’s approach to Lyme? I have been diagnosed with Lyme disease based on a positive culture via Advanced Laboratories. I have been on antibiotics for over 2 years. I have tried taking cholestyramine but have been made worse despite pretreatment. I now have an ill defined lung disease. I also have been diagnosed as having strongyloides with treatment provided (ivermectin). I have tested positive for MARCoNs and started treatment three days ago.
ANSWER: Complicated cases like this one demand an organized approached to assessment. I would want to verify that the HERTSMI-2 in your home, workplace or school is not elevated. I would want to make sure that the Lyme culture is indeed positive at this time. I always wonder about false positive cultures, but have no way of determining that. I would want to make sure your visual contrast test was normal; I would not have you get treated for MARCoNS without going through 30 days of full dose Welchol or cholestyramine first. I am uncertain as to the source of your obstructive lung disease and wonder if this is due to interstitial lung disease for which TGF beta-1 could be causative.
In the absence of elevation of both C3a and C4a, I am uncertain as to the diagnosis of ongoing Lyme disease. There is no question that whether the process that you suffer began with Lyme or mold or something else that we still haven’t heard about, treatment
of the abnormal physiology in a step by step fashion must follow.
5/ Alternative therapies, Lyme vaccine
QUESTION: I am recently concerned about the possibility that my complex illness is related to mold exposure. We have air samples showing Penicillium and Aspergillus. We have problems with duct work and vents containing excessive moisture. I have been recommended to use low dose antigens for treatment of mold illness. I am also taking reverse T3 for diagnosis of Wilson Syndrome. My son has an unusual depression and anxiety as well that is ruining his life. I have been told to obtain a SPECT scan. He has had a neurotransmitter test and is being treated with serotonin and norepinephrine.
ANSWER: Over the years I have had a chance to see multiple different approaches to treatment of complex illnesses such as yours and that of your family. I am uncertain as to what antigens are being suggested for you but if you have HLA based susceptibility, the
problem of defective antigen presentation will be a factor that you will need to take into account.
We saw a variation of this somewhat ominous idea for treatment stemming from the Lyme vaccine given some years ago in the thought that it would help prevent Lyme disease. In the Lyme case, an antigen, OspA was given intramuscularly on three separate occasions purporting to force the body make antibodies to OspA which would protect against the invading Lyme bacteria. Unfortunately, those with HLA DRB1- 4 (and there were multiple haplotypes that included HLA DRB 1-4) had difficulty processing this antigen. In essence, the Lyme vaccine became an exercise in asking the question, “If I give antigen to those who can’t process it, will I create a chronic inflammatory response syndrome in those with given HLA susceptibility?” The answer to this question, of course, was absolutely yes. Needless to say, the Lyme vaccine was a disaster, for those with HLA DR 4-3-53, 4-4-53, 4-7-53 and 4-8-53.
Therefore, please identify which antigens you are going to be given.
I am uncertain as the diagnosis of your thyroid dysfunction. Given that inflammatory responses will downregulate the intracellular enzyme 5’-deiodoinase that converts T4 to T3, I am reluctant to blame unusual thyroid problems on any syndrome in the absence of
correction of inflammation. In my experience such correction of inflammation often heals the putative source of the thyroid disorder.
Instead of a SPECT scan, one that shows abnormalities in arterialolar function, and these abnormalities have no bearing on capillary hypoperfusion, I would suggest performance of a NeuroQuant which will give volumetric data in a program that is FDA cleared.
Finally, I have not seen any data showing benefit from treatment with norepinephrine and serotonin for alleged neurotransmitter abnormalities. There are uses of norepinephrine in
particular illnesses but I am concerned that here there may be anecdotal use of medications without clinical basis. I would be happy to review the literature that your physician can supply to support such treatment.
Surviving Mold Resources on NeuroQuant and Lyme include:
1/ You may want to get started by referring to the roster of Post-Lyme symptoms listed on this website.
2/ If you aren’t familiar with NeuroQuant (NQ), you can get started by reviewing the information and resources on the Surviving Mold site.
A method of identifying Lyme disease is with the use of NeuroQuant. Now that this FDA-cleared volumetric program can be added for a low cost to MRI of the brain, we have been able to show a distinctive fingerprint of Lyme as well as a distinctive fingerprint for mold but each fingerprint is different from one to the other. What this means is that 10 minutes of MRI time has now shown the ability to separate mold from Lyme.
3/ The Surviving Mold NeuroQuant Analysis is an online resource developed to interpret your NQ for mold points, Lyme points, and more.
4/ You may be interested in the information presented in the “NQ on Lyme” talk at the Lyme Round Table (Tampa, 01/2013).
5/ You can also review the EPA-supported Hurricane Sandy NQ PowerPoint talk that Dr. Shoemaker gave at a conference in March 2013.
6/ The online Shoemaker Protocol™ Visual Contrast Sensitivity Test (VCS) gives indirect evidence about the source of biotoxin illness. If a person has untreated Lyme disease and takes cholestyramine (an initial step in the Shoemaker Protocol™ for treating “mold illness”), visual contrast will not improve.
