Has anyone here fully recovered from CIRS?

[Imanning]

I have been diagnosed with CIRS and started on the Shoemaker protocol at the end of August. Diagnosis was based on failed VCS test, high TGFB1, low MSH, one mold susceptible gene and positive GPL mycotox test. C4a, MMP9, VEGF, osmalality, cortisol were all normal.

I had symptoms for a few years of severe brain fog, dull squeezing headache, memory issues, dizziness, and anxiety with abnormal adrenaline surges. I definitely had high exposure to mold from water damage in the home we were living in. We have since moved to a new home and started Cholestyramine in September.

I had been tolerating the Cholestyramine well but within a few weeks, I developed severe shoulder pain which has since been diagnosed as frozen shoulder. I am unsure if this is related to mold illness or the treatment at all but I stopped the cholestyramine for a few weeks to see if it helped. (It did not).

My doctor wants me to restart Cholestyramine and test for MARCONS which I have resisted because I’m actually a bit freaked out after reading about how deep the swab needs to be. I have also heard Dr. Neil Nathan on a podcast say that he now thinks that treating MARCONS isn’t crucial to treating CIRS. I am overwhelmed by all the steps one needs to go through to get to the point where you are considered to be done with treatment.

I have read many of your journeys with CIRS treatment and am wondering how many have fully recovered and are symptom free? Did you have to do all the steps outlined in the protocol? Has anyone gotten to the final step of VIP spray and did that do the trick?

[CoachDD]

Greetings Imanning ~

I had to take a deep dive on this since this was the root of my issues over several years. I learned about CIRS only about two years ago after suffering for a very LONG time. I am so thankful to my FM doctor since I am finally on the mend - probably operating at around 85% which is huge for me. I was almost bedridden (with two teens still at home ) , had to go on disability and eventually left my 28+ year career in the Healthcare Industry. All that to say, this was life-changing for me (and eventually led me to a new career).

I am now a Certified Functional Medicine Health and Wellness Coach and currently working with a peer group of FM Coaches on a manual intended to help other coaches understand the complexity of this illness (which will, of course, help support patients). We hope to have something available (in print or e-book) within the next year.

Here's my response to your questions: I took Welchol, not CSM so I can't really speak to that specifically, but based on my research, some tolerate CSM just fine and others need to go very slowly. According to Dr. Ackerley (President of http://www.ISEAI.org ~ a great resource), Welchol is a quarter of the strength of CSM. Since it seems you were tolerating it quite well, I'd continue with that if at all possible since it is stronger and probably will help you detox faster. Keep an eye on cholesterol levels since CSM (and Welchol) will affect it and having low cholesterol levels is as concerning as having high.

I did the MARCoNS test ~ yes, it is uncomfortable, but not entirely intolerable. Mine came back positive, so I did the nasal spray (Biocidin with xylitol) and it seems to have resolved since I no longer have sinus issues which lingered for years...however, I haven't retested yet. I may not do so unless/until symptoms appear again.

There are various opinions on the best course of treatment with CIRS and I agree that it is quite confusing and overwhelming. You may know that Dr. Neil Nathan and Dr. Sonia Rappaport are no longer on the board of ISEAI...and it is a mystery as to why that is. Here's my latest thinking on all of this ~ I believe there are many ways to heal because we are all so very different. Some have found DNRS, EFT, EMDR and other alternative methods to be quite useful alongside treatment. People who are extreme mold avoiders believe that is complete nonsense and dangerous to suggest. I am somewhere in the middle.

I personally benefitted from taking binders and supporting my glutathione levels, but also incorporated meditation and more recently, cranial sacral therapy ~ which helped immensely ~ along with the other supplements by following a hybrid Shoemaker Protocol (under the direction of a FM doctor who is NOT Shoemaker certified). To be completely honest, the only reason why I didn't seek out a certified Shoemaker doctor is because there isn't one local to me.

I am not completely symptom free ~ I still have some labs that are off, so I haven't taken the VIP spray (which is at risk of being pulled from the market!). But...I am doing MUCH better than I was! Please know there is hope and you can feel better. Best of luck and do not hesitate to contact me via PM if you'd like to chat more about this.

[CathyS]

I had symptoms for a few years of severe brain fog, dull squeezing headache, memory issues, dizziness, and anxiety with abnormal adrenaline surges.

Based on your symptoms, it sounds like you were spared the joint pain, muscle pain, morning stiffness, ick pick pain and night sweats that I have suffered (among other symptoms). Since I just figured out this year that I have CIRS, it was not until I saw a complete list of possible symptoms that I realized that I have had this for years. Take a look at the list of symptoms at https://restorativehealthclinic.com/wp- ... onaire.pdf.

Because of all the pain and inflammation, I was taking Aleve for about 3 months (Jan to March 2019). I know that it is not ideal, however at the time I was seeing a Rheumatologist and it is what he recommended (rather than steroids). At any rate, I finally got my CIRS Dx at the end of July. But the pain was just too much to handle and I could not get any sleep. I went back on the Aleve and still take it once a day at dinner time.

I have been taking Cholestyramine as well. I took another vcstest Sunday and my results are still not good. From my understanding you have to take the Cholestyramine until 4 weeks after your vcstest normalizes.

I am hoping that once the Cholestyramine is well under way I will be able to go off the Aleve.

I encourage you to keep with the Cholestyramine since you will need to get the toxins out of your system. You may be experiencing additional symptoms that you haven't previously, and you might need an anti-inflammatory for a short time to help.

[circular]

You may know that Dr. Neil Nathan and Dr. Sonia Rappaport are no longer on the board of ISEAI...and it is a mystery as to why that is.

I hope someone will post it if a confirmed reason ever surfaces.

[Imanning]

Thanks for the responses. I didn’t hear from anyone that has fully recovered so still wondering if there are success stories out there.

Coach DD, how long have you been on the Welchol? Have you retaken or passed the VCS test? I’m afraid I’ll never get to that point as I have been having visual problems for the last 18 months since I became exposed to the mold and water damage. I have read that is one of the first things to improve if treatment is working and my vision in my left eye is still very fuzzy. Also, how often do you get blood work done to track your important markers? I feel like its probably not necessary for me to retest since many of my symptoms have not completely resolved although I am feeling about 50 percent better.

Cathy S sorry to hear about the pain you have been experiencing. My shoulder pain became unbearable while on the CSM and I began taking aleve and using heat and cold to just make it through the day and night. I wanted to stop the Aleve so I did some research and started taking an MSM supplement 1000 mg. My pain decreased by about 80 percent and became tolerable within a few days, i was shocked! Because I wasn’t sure if it was really the supplement helping I stopped it for a few a days and the pain came back. There is a lot of information on the internet about the benefits of MSM for joint and muscle pain so I would encourage you to try it if you feel comfortable with it.

[slacker]

Thanks for the responses. I didn’t hear from anyone that has fully recovered so still wondering if there are success stories out there.

Hi Imanning;

I don't think that there are many CIRS diagnosed members on our website; those with CIRS are more likely to participate in some of the threads that discuss this condition - like here and here.

You probably know that Bredesen states that CIRS is one of the more difficult conditions to reverse. Mold is often the main culprit, and is hard to correct and avoid. I'm about to start my second mold remediation on my home, looking for another source of mold in the basement. In addition to mold removal/cleaning, the team will small particle air clean both in the basement and on the main floor per Dr Shoemaker's protocol. Lyme co-infections and bartonella appear to be contributors to my CIRS. My VCSs have always been normal. CIRS labs not so much, and worsening over time, which I would expect with continued mold biotoxin exposure. I'm not sure that it was worthwhile to recheck since they didn't really help with a treatment plan. They could have motivated me to move out of my house, but in a humid environment, it might be difficult to find somewhere else to live that is significantly better.

[Plumster]

I didn’t hear from anyone that has fully recovered so still wondering if there are success stories out there.

I will let you know how I'm doing in five-six months . . . I had exposure this summer, place was remediated, threw out cushiony things, washed clothes in Borax or Ec3, intend to sun clothes that can't be washed--when the sun returns (sunlight kills mycotoxins). I am taking cholestyramine, bentonite and zeolite clay twice a day, NAC and alpha lipoic acid, drink lemon juice, eat cilantro and vegetables, plus I use the sauna a few times a week. My naturopath had more recommendations like epson salt baths, but I haven't tried that yet. I'll recheck my levels in December and get another Great Plains test in five months or so. I am feeling a lot better than I did just a month ago. I had trouble finding words and fuzzy brain. Now I feel sharp again. Like Slacker, my VCS tests were also always normal.

Dr. Bredesen speaks of success stories in his article "his Inhalational Alzheimer’s disease: an unrecognized—and treatable— epidemic," but I realize that that's not the same as hearing it from one of us.

[Imanning]

Slacker, I have read the threads you referred to and am a little surprised there isn’t more talk about it. According to FM doctors exposure to water damaged buildings is so common and about 25% are susceptible because of our genetics and the other 75% can also suffer if exposed to mycotoxins for long enough. It is probably very under diagnosed since it is not really recognized by mainstream medicine. When I first joined the APOE4.info forum I had just found out I had once copy of the APOE4 gene and was experiencing a lot of cognitive issues such as difficulty finding words, confusion, difficulty completing tasks and short term memory loss. Even though I had read Bredesen’s book, I didn’t relate to the type 3 Alzheimer’s he described and never thought to pursue that as a reason for my symptoms. And for some reason, I was kind of in denial that this could even be my problem. I had been seeing an integrative doctor for years and when my symptoms began, she really thought it was due to a decline in estrogen since it coincided with menopause. I have been on hormone replacement therapy for 2 years yet I still had debilitating symptoms. It wasn’t until I discovered the water damage with enormous amounts of black mold growing behind my kitchen cabinets (that had likely been there for at least a year or two) that I really started to suspect mold illness.

It is overwhelming go down that rabbit hole of pursuing a diagnosis and even some FM doctors aren’t that familiar with mycotoxin illness and Shoemaker’s work. Luckily I found a doctor familiar with the Shoemaker protocol who performed the necessary tests and yes I came back with many markers for mold illness. So, I wonder how many out there experiencing cognitive issues have undiagnosed CIRS.

I am feeling better since starting back up on the cholestyramine and have fewer days with brain fog and less trouble finding words and organizing my thoughts but I know I’m still not all the way there. Here’s hoping that day will come where I feel clear headed and sharp again!

Plumster and Slacker good luck with your recovery and please keep me posted!

[Plumster]

I did the MARCoNS test ~ yes, it is uncomfortable, but not entirely intolerable. Mine came back positive, so I did the nasal spray (Biocidin with xylitol) and it seems to have resolved since I no longer have sinus issues which lingered for years...however, I haven't retested yet. I may not do so unless/until symptoms appear again.

Imanning, what exactly were your symptoms for Marcons? Congestion and sneezing or something else/more? When I look up symptoms, all I find are the consequences of low MSH. I just started VIP but I do have some sinus issues. I was tested for Marcons in the spring and it came back negative. Having watched the video online, I am also not sure whether the nurse did the test right. But I had another mold exposure this summer and haven't been retested. My visual contrast test was fine. In any case, I wonder if I do have Marcons after the last exposure. I feel congested a lot.

[Plumster]

Also, Imanning, I thought that Beg spray was the treatment for Marcons. I have never heard of Biocidin for Marcons. Is that common practice?