I’ve never liked labels like CFS and I was really angry when they diagnosed me with Chronic Fatigue Syndrome at the Mayo Clinic — seemed like they were just washing their hands of me with that diagnosis. Now my doctor has diagnosed me with Chronic Inflammatory Response Syndrome (CIRS) and this time it feels different, much more useful. That’s because there is a treatment protocol associated with it. The problem with CFS is that it’s just too vague and there are hundreds if not thousands of possible treatments.
So what is CIRS, how was I diagnosed and what is the treatment? It started when my MD asked me if I thought I was biotoxic. I said without hesitation, “YES, of course!” So she wrote me a script for a bunch of blood tests which I have attached here and really was no surprise that I qualified for this new CIRS thing.
I couldn’t find any plain English definitions for CIRS, so here’s my translation from the gobbledygook I found: CIRS is the illness that occurs when someone who is genetically vulnerable to biotoxins is exposed and reacts with chronic and systemic inflammation. It turns out 25% of the population carries the genetics responsible for this condition. Check out what Dr. Dave Ou says about this:
About 25% of the world’s population have one of the 10 susceptible types of HLA DR/DQ gene. As of Nov 27, 2012 in my practice, I have tested 227 patients. Out of those 227 patients, 222 have one of the 10 types. That’s an astounding 98% of all of my patients who are vulnerable to the biotoxins from indoor mold and Lyme! Another way of putting it is nearly all of my patients come from only 25% of the population. I have spoken to my colleagues across the country and they’ve had very similar findings to mine. I sometimes joke that the HLA DR/DQ gene predicts if someone will get frustrated with conventional medicine and seek out alternative care.
I’ve written about some of the symptoms and diseases that are associated with these genes in my previous post. Unfortunately, there are only several hundred doctors in the world who are aware of this gene.
The surprise for me was that while I was focused on methylation as the key to detoxification, I was missing the HLA-DR pathway which is 100% responsible for clearing mold toxins and partially responsible for clearing other toxins like lyme, herbicides and microwaved protein.
My HLA genes are only partly flawed but according to my doctor, that’s enough to cause serious problems. My thoughts – maybe by itself it wouldn’t be significant, but taken together with my heavy metal accumulation, methylation flaws, use of antibiotics and acid blockers, and stressful life, it’s probably a key piece of the puzzle. More about mold genetics here.
After my blood tests came in, I sat down with my doctor again and she showed me this road map for bio toxicity disaster and as I read around it I thought, yep, I got that, check, I got that, check, I got that….
My doctor is following Dr. Richie Shoemaker’s work with the diagnosis and treatment and she believes that my toxicity is due to previous mold exposure which came from growing up on the East Coast, spending time in Guatemala and living in Florida. It wasn’t until I was 37 years old that I moved to dry Colorado.
I should mention that I first moved to Colorado thinking that I was suffering from mold toxicity. At the time I was reading Dr. Shoemaker and took his online visual acuity test which in theory diagnoses mold toxicity. He does say that there are rare cases of people who pass the test but are still mold-toxic. Nevertheless, I thought to myself, “hey, I passed the test and what are the chances that I’m one of those rare cases, nah…” and I moved on.
Well, turns out I am one of those rare birds. I should’ve known better because I do have some very strange visual issues. I’ve always chalked them up to adrenal insufficiency which affects the ability of the iris to contract sufficiently in bright light. The thing I should’ve thought about more is that I’m sensitive to certain patterns where bright and dark lines combine together. For example, I cannot talk to someone sitting in front of a window with those narrow metal blinds if they’re partially open. I get all disoriented and cannot see the person I’m talking to at all. Indoors I need very bright lights to function normally and outdoors I need sunglasses.
Back to my doctor. She says I’m toxic from old mold exposures. I argued that my gut is full of biofilm including what looks very convincingly like slime mold, and she answers that gut biofilm produces neurotoxins not mold toxins (I’m guessing we’re talking about VOCs). Is she right? Who knows! I think this is unexplored territory… She also says, “of course you have gut problems, because you can’t have a healthy gut without normal levels of MSH.“
It seems our mucosal tissue health is dependent on MSH. That would probably explain why I have to tape my mouth shut at night to avoid having my throat dry out. My MSH is too low to measure. Normal range is 35-81 pg/mL according to Dr. Shoemaker.
And now for the treatment… she asked me to take the anti-inflammatories, fish oil and curcumin, for 30 days before starting cholestyramine. I’ll be on the cholestyramine for up to nine months if I tolerate it. We checked to make sure that my cholesterol was high enough that I would not dip into dangerously low territory on the cholestyramine and I’m cleared for takeoff. This is all step one. There are some additional steps after the cholestyramine is done.
I did some reading on my own and found that Dr. Shoemaker says you don’t want to begin cholestyramine until your mold exposure has ended. So that brings me to the master cleanse – I thought, if my gut is full of biotoxins, I’d better clean it out entirely before starting the cholestyramine, just in case my doctor is wrong about the biofilm not being an issue…
I’m hoping that after the master cleanse I’ll be using ozone, blackseed and other antifungal’s to keep my gut clean, cholestyramine to remove the old biotoxins and chelation to help me get to Shangri-La, where I won’t need anymore therapies in order to stay healthy! Is it too much to ask, too much too fast? If it is, I’ll slow down.
I probably said this before but now it is especially poignant for me – I need to figure out all my health puzzles to protect my children. My youngest daughter is struggling with undiagnosed gut problems and we just had her MSH level tested. It came in at 14 which is in the normal range but I am worried that it is not up to Dr. Shoemaker’s standards. It looks to me like Dr. Shoemaker considers below 36 pg/ml to be low. She did live in Florida and has spent time in Guatemala also….
This weekend we are ponying up the big bucks for the Genova Diagnostics premium stool test for her and she may start the master cleanse on Monday. She’s already been through gluten and dairy elimination diets, a SIBO diet, and IBS diet and nothing has made a significant difference.
That’s all the news that’s fit to print.