Mold/Environmental Falsely diagnosed Fibro/CFS for nearly 10 years.

Turned out it wasn't Fibro/CFS. Everyone should rule out CIRS/Mold Illness first.

  1. Ryan
    Source of the Story:
    My story
    Resource Type:
    Patient Story
    Name:
    Billy "Ryan" Johnson
    Diagnosis:
    • Mold Sensitivity
    Disease Course Over Time:
    The first 5 1/2 years were pure hell. Wished for death. Changing diet, supplements, and becoming more healthy brought me out of obscurity the next 4 years, but the illness remained. After nearly 10 years, a diagnosis of Chronic Inflammatory Response Syndrome (CIRS) was life changing. In only 5 months of treating I am almost back to normal again.
    Mold Avoidance Approaches That Made A Difference:
    • Use the ERMI test to evaluate a prospective home for mold problems.
    Type of Onset:
    acute flu-like
    Detoxification Treatments That Made a Difference:
    • Other Nutritional Supplementation
    • Dietary Changes
    • Sauna
    Functionality at it's Worst:
    Mostly bedbound
    Symptoms:
    Crazy part is this illness mirrors the symptoms of what some call Fibro/CFS. The worst was the horrible pain, the unrelenting fatigue that hurts to explain, poor sleep, and about 45 other symptoms. I always called it the flu from hell that would never go away. So much pain and fatigue that you wish death at times. This is a multi-system, multi-symptom illness that affects too many things to list.
    Positive Test Results:
    When finally diagnosed for CIRS/Mold Illness I had many indicators in my blood that showed I was absolutely positive. I couldn't believe these blood tests were never ran before. I had a positive Neuroquant MRI. From the special MRI alone I could have been diagnosed positive. I also did a MARCoNS swab up my nose and that culture came back positive.
    Treatments That Made A Big Difference:
    Using a binder is key. I used Cholestyramine, Welchol, Activated Charcoal, and many pectins. The main pectin I use is juiced green apples.

    The No-Amylose diet was key.

    Used BEG spray to get rid of MARCoNS.

    A change in supplements was important.

    A low EMF infrared sauna has really helped.

    Detoxing with food in general.

    Biological Dentistry work.

    I did a lot of bio-hacking and have read thousands of articles on what has helped others. Joined some like minded Facebook groups of others who have struggled or overcome this.

    I would say I follow the Shoemaker protocol 80% and the other 20% is a hybrid of what has worked for others. Avoidance is key and if you are still in a Water Damaged Building infested with Bio-toxins you probably won't get well, especially if you are genetically susceptible.
    Treatments That Helped:
    I used an AMAZING biological dentist out of Tucson, AZ. Her name is Dr. Jeanne Krizman of Krizman Dental. She knows about CIRS/Mold and it's relation to chronic illness. She taught me so much about how your teeth can play a big factor in chronic illness. She took out my two mercury amalgam fillings, treated my two root canals and cavitations with ozone and prolozone injections. She did ozone up my nose for MARCoNS treatment, did a CT scan of my mouth and went over it all in detail. Her and her staff are very passionate and caring. If you wanted to reach them here is the website: http://www.krizmandental.com/.
    Treatments That Had No Effect:
    I would say that when my diagnosis was Fibro/CFS those treatments helped to a degree, but only made a VERY small dent. We need good multi-vitamins, probiotic, good diet, etc., but that will only get you so far if you have become sick from a Water Damaged Building.
    Treatments That Made You Worse:
    Lyrica, Cymbalta, Savella, and a few other similar poisons.
    Present State of Health:
    • Almost recovered - Able to lead norrmal lifestyle
    Practitioner Associated With Recovery:
    Dr. Jennifer Smith of Lifestream Wellness Clinic in Scottsdale, AZ
    Suggested Resources:
    www.survivingmold.com
    Just do a simple search for 'what is mold illness' and you will find enough videos to last 10 years and enough free reading material to last a lifetime.

    https://www.wellnesswithbrit.com/ Brit is a great wellness coach if you need someone to walk you through all this. She has been there and done that and battled her way out of this.
    http://lifestreamwellnessclinic.com/ This is where to find my amazing Dr. Jennifer Smith.
    Words of Advice:
    I would never accept a Fibro/CFS/ME diagnosis until they develop a test that can prove it. Some Dr.'s make millions off desperate people and treat them for Fibro.

    The best advice I can give you is do all the testing for Chronic Inflammatory Response Syndrome (CIRS). Rule that out before anything else. After that try your best to rule out lyme disease. You also should see a biological dentist who is well versed in toxic teeth. Amalgams, root canals, and other issues need to be taken care of properly.

    I can't say Fibro/CFS/ME doesn't exist, but what I know for sure is that a majority of those who have been told they have Fibro/CFS/ME really have mold or lyme or both going on. Also, keep an open mind - lots of false info out there.

    Another thing to remember is this is not just caused by mold, think of it as more of the toxic stew that a Water Damaged Building would cause. Look into the work of Dr. Ritchie Shoemaker and other like minded physicians. Ignore the naysayers - almost all Dr.'s have no clue what this can do to a person.
    For some of you this may be the most important post you read. Like drinking from a fire hose, but it’s incredible info that could change your life. I’ll break it up for those who are curious and to those who want to move on and maybe come back later.

    You may not have Fibromyalgia is what this post is about. You may have something that is easy to diagnose and is treatable. Something that at first will sound too good to be true but the more you read the more you’ll start to realize this could be true in your case.

    To give you some background I had been diagnosed with Fibro/CFS since Sept. 2007. Life has been a living hell since then and I know everyone here can attest to what I mean. Since that time I had been to over 120 Dr.’s and have flown to 5 different states to meet what were supposed to be the best specialists in this field. I have amazing insurance and have spent over $130K out of pocket getting nowhere – such a horrible education.

    The week of Dec. 19th 2016 I met with 5 different Lyme Disease Dr.’s in the Phoenix, AZ area as I thought I may have Lyme hiding in me even though I tested negative twice. At my 5th and final visit I was told a half hour into the visit that the Dr. suspected I had something called Chronic Inflammatory Response Syndrome (CIRS), aka Mold Illness, aka Water Damaged Building syndrome, aka ‘Biotoxin Illness’. I had never heard of this before. I had not come across that term in any of my studies of Fibro/CFS. Come to find out the majority of Fibo/CFS people have Mold Illness.

    It took me a lot of years and a lot of money to find this out. Here is the best part for whoever wonders if they have this. There is confirmatory testing and almost all of it is covered by insurance. I will put more details in further comments that will guide you on what you need to do if you want to get tested.

    This Dr. in AZ had me do a Neuroquant MRI – there are only two places in Phoenix that do this.

    I did a VCS test and what is called a MARCoNS test.

    Then I went to Lapcorp with the labs she gave me. I then had to go to Quest labs for two vials that insurance didn’t cover. If you’re on a budget you can skip those two and just do the ones from Labcorp that insurance covers.

    You can do the VCS test online for $15 and you can have a MARCoNS kit mailed to you – I did mine in the office and it was included in my visit; normally it’s $50 for a negative test and $85 if you’re positive.

    My Dr. called me two weeks later and said that just by my MRI I am positive for CIRS – 5 out of 8 of the quadrants they look for were inflamed.

    Then I found out my blood test and all other markers were positive. All other blood labs I had done in the past had been fairly normal. These labs were different than any other testing I had ever done.

    There are major milestones and steps in the treatment of CIRS/Mold Illness, but many make a full recovery as long as they are not in the toxic environment. I’m not talking about normal mold (P.S. Mold is only one cause – there are other things that can trigger this inflammatory illness – so don’t let the word Mold sidetrack you). I’m talking about dangerous substances that are found in Water Damaged Buildings. Some estimate that nearly 50% of the buildings in America have water damage. It’s a very dangerous bio-toxic cocktail that can be found anywhere – see links below for more info.

    Even if the place you are living is fine you could have contracted this illness anywhere and it turns chronic. Some women even have breast implants that turn toxic and cause this illness. There are several ways to contract this illness. For those who may be skeptical please do a simple search on ‘what is mold illness’ and see what you find. It’s amazing that this gets missed.

    I now know I do not have Fibro/CFS – those are only symptoms of CIRS/Mold Illness. How this gets missed so often is something I’m still scratching my head over. My own mother was told she had Fibro/CFS for 28 years. After I was properly diagnosed I had her get tested. Turns out she has had CIRS/Mold Illness the entire time and we share the same genetic haplotype as our blood tests shows we are both genetically susceptible.

    In short one study by Dr. Neil Nathan showed that 93% of Fibro/CFS patients have mold as the root cause of their illness or it contributes greatly to it. All this research is peer reviewed and the info on this is endless on the internet and in medical literature – many of these Dr.’s purposely provide this info for free because they know most of us can’t work and don’t have the funds.

    I know some here suffer with far more than just Fibro and maybe this is a small piece or not a piece at all for you. I beg you ALL to look further into this. To research and study these links and then get tested.

    One tricky part may be finding a Dr. who will be open minded and support you in this testing. Chances are very very high that they have never heard of this. You will need to come armed with education about this. I have been blessed to have a very patient and understanding family MD who was willing to work with me. I have found that these qualities are rare among MD's and specialists.

    If you pay close attention there is a slow and steady increase in understanding of how water damaged buildings are a huge cause of chronic illness. There are more and more believers coming forward and although research is being done the progress is slow. But to those of us who already "know", the research is already there proving this is all true. There are over 10 years’ worth of free videos that you can watch on this and a lifetime of information to read.

    Suzanne Somers even has a new book in 2015 about this called ‘Tox-Sick’. The best book that sums it up quickly is a 2016 book on Amazon kindle called ‘Mold and Mycotoxins’ by Dr. Neil Nathan. He condenses it pretty well into a short read. A couple longer ones called ‘Surviving Mold’ and ‘Mold Warriors’ may be appropriate later if you test positive.

    One of the other interesting things about CIRS/Mold Illness is there is a genetic susceptibility gene that you can test for (insurance pays for that as well). Approximately 25% of the population is genetically susceptible and you can find out if you are. Dr. Shoemaker did a study of a pediatric unit where there were 163 patients diagnosed with CFS. He found the genetic susceptibility gene called HLA in all the patients. Further testing showed all 163 had Mold Illness not CFS. Him and others like him don’t claim every single case is Mold, but they all say that the majority of us have Mold Illness. My guess is that the majority of this group has this gene and a very large number of you have Mold Illness.

    My main reason for letting you know is I know what it’s like to suffer beyond comprehension. The fatigue, the pain, the insomnia, the brain fog, the irritability and stress it causes when your life crumbles around you. I'm now able to feel genuine joy more than ever and doing the things I did before I was sick.

    It’s my mission to now educate and I have started communication with several of the 120 Dr.’s that I can remember who misdiagnosed me or had no clue. Some have been phone calls and some have been letters, but most Dr.’s I have forgotten.

    You need to know that this is a big possibility for you and I hope it is because with Fibro there is not much that works – most things we take actually make it worse. In fact there is NO test to show if you even have Fibro which has me and others wondering if there is even such a thing as Fibro. If there is how does one prove it.

    We know the pain, fatigue and other horrible symptoms are real, but the big question is what is causing it. With CIRS/Mold Illness you can easily rule it out. There are things that can improve what is known as Fibro, but what I found is the things I was doing to improve Fibro are also good for CIRS such as a healthy diet, probiotic, good vitamins, etc.

    With Mold Illness you must remove yourself from exposure. You have to be very specific in what you do and be very patient. Under the Shoemaker protocol there are 14 steps, but there are other paths to getting well although they are all very similar.

    See below of exactly what you need to do to be tested.

    So here are the labs you would need to have your Dr. order. Much of the free info on the internet will help you interpret the results. I would be happy to help if I can. The link is http://www.survivingmold.com/diagnosis/lab-orders and the main one you need to take to your Dr. is the link called Physicians Order Sheet. This link tells you a little about what you are identifying in some of the biomarkers on the labs: http://www.survivingmold.com/diagnosis/lab-tests.

    Take both to your Dr.’s apt.

    A quick overview of these main important labs are:
    These labs include a series of immune inflammatory and other markers commonly out of range in CIRS/Biotoxin Illness as a result of mold/lyme.

    - C4A - Indicative of recent mold exposure.
    - TGF-Beta 1 - Indicative of longer term mold exposure.
    - HLA-DR - Genetic testing to determine whether you are one of the 25% of the population unable to properly detect and eliminate biotoxins from mold/lyme and other sources via the immune system.
    - MMP9
    - MSH
    - VIP
    - ADH/Osmolality
    - AntiGliadin Antibodies
    - VEGF

    For the VCS test you can do it from this link for $15. The study shows that 92% fail it if they have Mold Illness. This is the most unreliable of the tests by itself. I passed this test. http://www.survivingmold.com/store1/online-screening-test

    For the MARCoNS test here is the link to have one shipped to you for free. When you send it back it’s $50 if it’s negative and $85 if it’s positive. Also here is a link with instructions and a video:
    http://microbiologydx.com/
    http://biotoxinjourney.com/marcons/#Testing

    This is one of the best links where it condenses what the symptoms are. You’ll notice that many of them match up with the symptoms of Fibro: http://paradigmchange.me/diagnosis/.

    This free quiz will help give a very quick indication if your symptoms might match this illness:
    http://biotoxinjourney.com/biotoxinillness-test/

    These are common misdiagnoses when it’s really Mold: http://www.survivingmold.com/diagnosis/common-misdiagnosis.

    For those who want to know the science behind this these two links will help: http://www.survivingmold.com/diagnosis/the-biotoxin-pathway.
    https://selfhacked.com/2015/09/02/the-root-causes-of-mold-problems-msh-sirt1-socs3-and-hypoxia/

    Here is a great informational document that condenses a bunch of info about this with links: https://docs.google.com/document/d/1uT6DSkK5lLqH6-5hbaBBalsscMOmubscFpLpV4JLzJU/edit#heading=h.6nylztazc9w

    An amazing interview with Dr. Jill Carnahan. She gets it but has a 2 ½ year waiting list if you wanted to see her: https://www.youtube.com/watch?v=4_8UOUsM_rY
    There are other Dr.’s out there who treat this. Some of them are called Dr. Shoemaker certified Dr.’s. Some like Dr. Carnahan are not. It’s best to find one who knows what to do if you test positive.

    Best interview with the pioneer in this research and treatment (Dr. Shoemaker). Dr. Kresser interviews Dr. Shoemaker: https://www.youtube.com/watch?v=KNXwM7U4uNI

    Couple other helpful websites:
    - www.biotoxinjourney.com
    - www.paradigmchange.me

    Finally, the best for last. This is a recent documentary made on Mold Illness by the ‘Bulletproof’ guy and will be well worth your time to watch.

    If you made it this far and are able to watch this, I believe it will piece this together and give some of you the answers you’ve been searching for for years. God speed and God bless. I wouldn’t have shared all this unless this was absolutely important. This won’t be for every single one of you, but it will be for the majority of you. I bawled like a baby watching this because I identified with what I was watching. https://www.youtube.com/watch?v=014c3k1kr-Q&feature=youtu.be&app=desktop

    If you have any questions let me know. Sorry this was so long. There is no short way to explain this. What have you got to lose!?! Go get tested!! Good luck!! Let us know the results…
    Susan Hampson and Wayne like this.

Recent Reviews

  1. lisapetrison
    lisapetrison
    5/5,
    Thanks much to Ryan for providing this resource! This is very helpful indeed.

    However, I do want to state that if people qualify for a diagnosis of ME/CFS or fibromyalgia, then I do not think that it is appropriate to suggest that they were "misdiagnosed" with those officially recognized diseases if their illness turns out to have a mold component (or a Lyme component or an EBV component or a POTS component or whatever).

    Certainly we can say that those other components have been missed, but that does not mean that the illnesses of ME/CFS or fibromyalgia (which have no known causes and etiologies that are very poorly understood) were "misdiagnosed."

    For all we know, EVERY case of ME/CFS and fibromyalgia actually has a mold component. But we will never know that out if people continue on with this "misdiagnosis" concept and remove everyone who figures out the underlying issues from the ME/CFS category.

    Again though, thanks much for putting together this very valuable resource!
    1. Ryan
      Author's Response
      Thanks Lisa!! Thrilled that you would give it a 5 star review. Thank you for your work to create awareness about chronic illness.
  2. HMBCheryl
    HMBCheryl
    5/5,
    It's exactly like drinking from a firehose!
  3. Wayne
    Wayne
    5/5,
    Review
  4. Cort
    Cort
    5/5,
    Just superb Ryan! Thanks for being such a great resource...:)
    1. Ryan
      Author's Response
      Thanks Cort, that means a lot coming from you. Your resources and work have helped so many.
  5. Learner
    Learner
    5/5,
    Impressive set of resources, Ryan! Thanks for sharing and so glad you regained your health!
    1. Ryan
      Author's Response
      Thank you!!
  6. Lissa
    Lissa
    5/5,
    Yes, long... but well worth the read! This says it all. I'm on the same path, have read the same articles, and fully concur.
    1. Ryan
      Author's Response
      Good luck to you Lissa!!