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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Newbie with a symptom question

First, thanks to all of you for your contributions to this forum. They are both informative and helpful. I'm sure I will be posting more information about myself in the weeks and months ahead, but I'll begin with this post.

Although I have been diagnosed with fibromyalgia and CFS, I truly believe that they are default diagnoses or, as I call them, diagnoses of convenience. When the medical world cannot pinpoint the underlying cause or causes of an ailment, what better way to respond to a patient's complaint than to give a "name" to their disease, even if there are no diagnostic tests or markers based on hard science.

In reality, I believe I am suffering from a mold related, mycotoxic/biotoxic disorder, based on the fact that I once lived in a home that had a serious mold problem (documented by a mold inspection) and an allergy test that proved positive for one of those molds, namely penicillium. During my period of exposure (nearly 3 years), I developed nearly 40 distinct symptoms, many of them neurological in nature. Upon removing myself from the source of the mold, some of the symptoms disappeared, some diminished, but some have lingered, especially the usual suspects: generalized pain and relentless fatigue. I find that when I am extremely tired, some of the diminished symptoms (balance, gait, slurred speech, mental fog, etc.) return as strong as ever. Both MS and Lymes were excluded after studying my spinal fluid.

I have consulted a number of specialists in infectious disease, allergy/immunology and neurology. For now, let me just say that anytime I mentioned toxic mold, I was treated with disdain (at best) and even hostility (at worst).

It is worth noting that I have not suffered from a common cold in FIFTEEN years! That sounds like a good thing, but it raises the question: Why not? Prior to that time, I usually had 2 - 3 colds a year. I was a public school teacher who was constantly exposed to students with colds. Now suddenly I find I am immune to colds. Several doctors I've consulted have told me that it's quite common for a person to acquire immunity as he/she gets older. But with there being over two hundred different viruses that can cause a cold, have I really built up an immunity to that extent?

I have no idea if my cold immunity has any association with my other symptoms or my prior diagnoses (official or otherwise), but I wonder if my immune system is out of order to the point where my WBC's are a bit too efficient.

Any thoughts or comments?


Senior Member
A lot of stuff has been written about the TH1/TH2 aspects of ME and also the tendancy for people not to get colds / get lots of colds and reasons that this could possibly be. I'm on of the long term patients who has had both of these. Sorry no idea why.

Also there are CFS patients who have been looking at the mould angle for years so you may find some company here. Been well discussed.

If you do a search you will find threads on both these topics. Good luck.


Senior Member
Hi, BluesBoy.

Biotoxin illness from mold exposure is definitely a reality. Mold allergy is a separate issue from mold toxicity, but it is possible for a person to have both. I don't know if you are familiar with the work of Dr. Ritchie Shoemaker. If not, you might benefit from looking into it. A few months ago he gave a seminar on biotoxin illness in Santa Rosa, CA, and Scott Forsgren wrote a summary of it, which may be helpful to you: http://betterhealthguy.com/joomla/blog/251-biotoxin-illness-conference-2011

Dr. Shoemaker also has websites and has written some books on this, the most recent one called Surviving Mold. Here are his websites:

www.chronicneurotoxins. com


In my opinion, biotoxin illness is one of the possible routes into ME/CFS for those who are genetically predisposed. Therefore, it may be necessary to treat both to bring about full recovery. Dr. Shoemaker has developed a treatment protocol for biotoxin illness. I have proposed the simplified methylation protocol to treat ME/CFS. You can find the latter in part 7 of my documents in the General Wiki section of this forum, which can be accessed at the bottom of the "Forum" page.

Best regards,



Senior Member
Long Beach, CA
I number of patients have noticed not getting colds. That may be true, because parts of our immune systems are over-active. But it could also be that we do get colds, that is get infected with cold viruses, but don't show the normal symptoms. It might be that the part of the immune system that triggers the histamine response (runny nose, itchy eyes, cough, etc) isn't working.

Certainly ME/CFS is sometimes used as a wastebasket diagnosis, but just because some people are misdiagnosed with it doesn't mean that there isn't a real, distinct clinical entity that is ME/CFS. The International Consensus Criteria describe a specific disease. I don't know if that's what you have, but it appears that it can be triggered by environmental toxins such as mold, in some cases. I would say that the hallmark symptom is post-exertional malaise. If you suffer from a relapse or exacerbation of symptoms from relatively small amounts of physical or mental exertion (even without further exposure to mold), that's a pretty good clue that it's ME/CFS.

It may be that ME/CFS is one disease that can have different triggers, or it may be that ME/CFS is actually a family of different diseases with similar symptoms and pathology, like cancer is.

Whatever it is, I'm sorry you've got it, but welcome to the community.


senior member
Concord, NH
Welcome to the forum!

I am under the impression that you are already a patient of Dr. Shoemaker, your story rings a bell with me, but I could be wrong.


Again, welcome!:balloons: