SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
How many people here have had the panel done from Dr. S mentioned in the Mold Warriors book - MSH, MMP9, VEGF, etc.?
Did you find that it provided any useful insights? I am just now reading the book and feel like it provides alot of good information and some missing pieces of the puzzle around the genetics, cytokines, etc.
Interested in any others that have done the recommended panels.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I did the panel and tested + for a number of molds. Unfortunately, avoidance and remediation were the only options. Cholestyra and allergy shots weren't much help.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Hi Scott!
Yes, I have done the panels. I had the complete panel done in the beginning, and had all of the imbalances that he looks for to indicate neurotoxins.
HLA gene type susceptible. Low MSH High MMP-9 My VEGF was HIGH, indicating resistence. High Leptin Dysregulated cortisol/ACTH Dysregulated osmolality/ADH High C4a Positive VCS Positive MARCoNS with methicillin resistence
My doctor has used the MMP-9, VEGF and C4a to guide my therapy. It showed when my antibiotic protocol was too aggressive, when I had toxin exposure, and when I needed more support.
I've done CSM, Actos, and treatment for the MARCoNS in addition to treating TBDs and watching out for mold exposure. I also have to be careful of what abx I use, because with the post-Lyme gene type, an overly aggressive Lyme treatment overloads the detox system.
Yesterday I got back my latest labs, and for the first time since July my MMP-9 is normal! VEGF is normal, Leptin is normal, and C4a is half what it was. My MSH is still non-existent, but I have a gene type that may not recover that. I'm hoping that the FDA trials make MSH available soon!!!
My Lyme infection is not gone, and I will always have to be extremely careful about mold exposure, but this protocol has brought me a long way.
As you say, it explains a lot, once you understand the biotoxin pathway. Dr. S is also doing continuous research, and has new info on the complement pathway that isn't in the book, but is part of the protocol now.
posted
my LLMD has done the same panel that riversinger mentions (minus the osmolality/ADH) and i fit the "mold warriors" pattern to a "t".
another one of my doctors, a mold specialist, has found severe mold allergies via antibody tests and is treating me with infrequent, european style low dose allergy shots -- after 2.5 years now, i think those are helping some, but it is slow going. avoiding mold is important and that is difficult in the real world.
i have very high VEGF, something that apparently can be associated with bartonella infection (a pubmed or google search will turn up several papers on this connection). i tested neg for bartonella and indeterminate for lyme, but have many of the symptoms.
i've used CSM off and on for a few months, but it upsets my stomach and it is hard to schedule around supplements and herbs. actos gave me bad side effects so i'm not taking that. did the low-amylose diet for about a month and lost not a single pound and felt absolutely no different.
the MARCONS treatment has helped me some, but it may be because the antibiotics used for that treat more than a staph infection in your nasal passages.
i took chlorella for about a year a while back during a mercury detox, and felt it helped some but was expensive. antibiotics, antivirals and herbs are my current treatment, and i'm having some improvements with those.
as for Dr. S's protocol, i'm undecided about how useful it is. theoretically it is interesting but i have not yet had dramatic practical benefit from the treatment. i'd say if your insurance will cover the tests (mine did), why not? otherwise, maybe do a few at a time and see what they reveal.
Posts: 47 | From California | Registered: Feb 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Are the European allergy shots called EPD or LDA? Thanks
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
they are like EPD shots but are called FAME (food and mold enzyme). the doctor i see is in on the peninsula. feel free to email me if you want contact info.
Posts: 47 | From California | Registered: Feb 2006
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posted
A couple of years ago when the 1st book, "Desparation Medicine" came out hubby did the tests -- a couple of the ones listed by Riversinger are new since then.
Also did the $1000 mold antibody test from Immunosciences.
Tried Actos and Questran for a couple of months -- could only take the Questran once per day. No obvious improvement.
Mold tests were slightly elevated -- no sinus symptoms and no strep. Other test results were kind of mixed -- no clear cut diagnosis.
Tried the P.K. protocol later and was told by this doc that antibiotics plus the P.K. protocol would resolve any mold issues. No further testing done so can't prove or disprove this theory.
Have not followed up on the mold angle. Do plan to buy the book soon and possibly revisit the issue -- may repeat some tests, but NOT the mold test (too expensive in my opinion unless symptoms were more obvious).
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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