CIRS

I have an amazing primary care doctor that is extremely knowledgeable with chronic illness.

She said based on my history of Lyme, possible mold, etc she has a huge suspicion of CIRS. She ordered tons of labs to prove or disprove the theory, and then, if positive, would have me follow Shoemakers Protocol.

Does anyone have any experience with treating CIRS both bad and good?

I am still continuing to do the Jernigan Protocol and at this point not really feeling a whole lot different from that.

She said if the CIRS testing is negative she would like to do an organic acids test to look at mitochondria health.

My symptoms are dizziness, fatigue, headaches, brain fog, stomach issues (IBS), blurry vision.

Other symptoms kind of come and go as well.

There's lots of good info here!

https://www.survivingmold.com/docs/understanding_cirs_editv2a.pdf

'Toxic Mold, CIRS and Lyme Disease Support Group'

thats a good FB group to join, very active.

I am using okra powder as a mycotoxin binder and having some success with it.

CIRS treatment varies based on what your issues are. Have you done urine testing for mycotoxins to see if you have high levels of any of the major ones? Have your home (and workplace, if applicable) been tested to see if you're being exposed currently? If your CIRS is secondary to mold exposure, then your doctor might recommend or even insist that you remove yourself from the source of exposure before treatment. Once removed from exposure, you likely will be given a binder for mycotoxins. Different binders work best for different molds, so if you can afford the urine test ($300 from Great Plains) then that could help direct you toward the right binder (charcoal, cholestyramine, zeolite, modified citrus pectin, bentonite clay, etc.). Make sure to take binders hours away from food, supplements, and meds, and do whatever you have to do to make sure you have a bowel movement each day.

The panel of tests Shoemaker recommends for CIRS can be useful but a lot of doctors seem to be moving away from it, since the numbers can be influenced by other things. For example, VEGF can be high due to bartonella, and c4a can be high due to Lyme. Like the visual VCS test, these tests can give a general idea, but no one test is all that meaningful in isolation.

Do you have chemical sensitivities, allergies, or mast cell activation syndrome? There's a great deal of overlap with MCAS. You might need to stabilize using quercetin, a low-histamine and anti-inflammatory diet, antihistamines, cucurmin, histaminum (homeopathic), limbic system retraining (DNRS or Gupta), certain drugs, etc. and by figuring out and avoiding whatever triggers inflammation for you. For some people, stress or heat is enough to set the symptoms in motion.

Definitely check out Neil Nathan's book Toxic. He answers a lot of your questions! I flew through this book in a night, it was so insightful. Also search the archives here for notes on a recent environmental illness conference (I think last spring?) in which lots of big names in CIRS discussed their latest thinking on theses issues.

Glad to hear you like your doctor!

I went to a CIRS doctor workshop taught by Dr. S. and currently going through his protocol with Dr H. in Virginia.

One of the first things to do is to check if you are genetically susceptible to Mold toxins, and I was.

take this visual contrast test online, it's free (or 10.00 donation if you want expanded results):

VCSTEST.COM

It will distinguish between lyme and mold depending on the bands you hit, (or in my case MOLD and LYME).

I failed both, and when I did a Mold test on my house, it came back positive!

Dr S. has a solid protocol in place to restore the immune system and get it back in play.