ME is not mould intolerance; mould intolerance is not ME

[mango]

I don't doubt mould intolerance is real. I don't doubt that some kinds of mould can be very harmful to anyone, regardless of whether they have ME or some other illness, or are otherwise healthy people.

I've read the book Through the Shadowlands now. I didn't get the impression that Julie was claiming that mould avoidance is the answer to ME. Actually, the way I read it, she didn't even say it was the answer for her.

As I understand it,

Spoiler: Click to reveal hidden text

The main key to her (partial?) recovery was the psychic who helped her heal her childhood traumas, which incidentally made the mould issues go away almost completely. As I understand it, it wasn't fundamentally about mould for her, but mainly about unresolved childhood traumas.

Also, as I understand Julie's comments about her sessions with the psychic, the spiritual healing wasn't the main part of it; it was the underlying psychotherapeutic aspect of it that made the real difference.

The impression I got was that the psychological aspect was the thread running through the whole story, with several clear milestones where her physical health improved substantially when her emotional/psychological health had an upward turn (for various reasons, such as, for example, letting go of stressful thought patterns or unhelpful beliefs).

Those of you who have actually read the whole book (as opposed to comments based only on interviews etc), I'd love to hear your thoughts on this. Did you understand it differently?

I have to admit I was very surprised and deeply disappointed by Shadowlands... I felt it was completely different from how it has been marketed, different from what we have been led to believe it's about... It's not at all what I expected or hoped for The framing concerns me.

Seen "only" as an autobiography, though (as opposed to "a book about ME written from a scientific perspective"), it's a great read. So yes, I'm having very mixed feelings about it.

 

[Gingergrrl]

@mango I have not read the book but just read your spoiler and without saying anything, I can tell you as someone who lived through hardcore mold/mycotoxin illness in our former rental, I would be disappointed by what you revealed in the spoiler too. It has no relevance and completely minimizes how dangerous mycotoxins like stachybotrys (black mold) can really be.

 

[Marigold7]

@mango I have not read the book but just read your spoiler and without saying anything, I can tell you as someone who lived through hardcore mold/mycotoxin illness in our former rental, I would be disappointed by what you revealed in the spoiler too. It has no relevance and completely minimizes how dangerous mycotoxins like stachybotrys (black mold) can really be.

Not read the whole thread but minimising black mould sickness is unspeakably stooopid. I lived in an old house where black mould had been painted over. I got sicker and sicker and it was"odd" that when I was away for a day I breathed more easily. Then I realised one day the place was full of black dust. I left asap and many of the so-called severer M.E symptoms eased a lot. Please take care that in the zeal t prove we have M.E we see these things as less than they are. Black mould kills. I was in stage 3 of black mould disease

 

[kikala]

I also just finished the book. It's funny how we can all read the same book and get different take-aways!

I didn't feel like she underplayed the mold at all. She recounted many, many times when mold made her so sick, and nothing except getting away from it and showering made her feel better. She tested this on herself over and over. She also says that while the spiritual/psychological healing she did was integral to her personal recovery, her body wouldn't have been able recover without the mold avoidance. She says she's still a bit sensitive to mold and carefully avoids it.

I also had mixed feelings about the book. She's a beautiful writer and the first part of her book, which covers her descent into ME/CFS, will feel familiar to many of us here. As someone who hasn't recovered, I found it almost excruciatingly painful to read about her recovery, because she describes the wonder of running after so many years of illness, and it made me feel my own grief at being so sick for so long on a whole new level.

The book was also painful because it stirred up so many feelings about maybe needing to explore mold. It has never seemed a possibility to me for many reasons, including my sudden onset, the lack of any "location effect" (feeling better in different places, and the fact that I've moved three times since I got sick and haven't felt better or worse in any one of them), and the lack of extreme fluctuation with my symptoms. While I have long crashes and periods where I'm not as totally out of energy, I've never been nearly as up and down as she was.

And mostly, I can't quite imagine how I could do a huge extreme mold avoidance thing like going away to a desert with all new stuff. But then I think: what if there's a *chance* I'd would feel better? Do I do it if there's a 2 percent chance it'll work? How do we make these painful decisions??

Would love to hear others ideas -- and also know if there are any truly reliable methods of finding out if one is sensitive to mold without going to extreme measures.

 

[Gingergrrl]

Black mould kills.

Am glad you said this @Marigold7 and I think a lot of people do not realize that black mold can actually kill you. It can cause bleeding in the lungs and is a common cause of SIDS (crib death) in babies.

Would love to hear others ideas -- and also know if there are any truly reliable methods of finding out if one is sensitive to mold without going to extreme measures.

In my case, we discovered through three sets of separate testing that our former rental had 19 kinds of mold including toxic black mold being circulated through our a/c system. Won't bore everyone with the story but the level of mold (through swab testing) on our belongings (clothing, electronics, furniture, etc) was highest ever seen by mold testing company with black mold at 8.0 ppb (parts per billion) and positive was above 0.02 ppb. We moved and lost almost everything we owned in mid 2015 but I do not believe I would be here writing this today if we had not.

 

[Marigold7]

The book was also painful because it stirred up so many feelings about maybe needing to explore mold.

And mostly, I can't quite imagine how I could do a huge extreme mold avoidance thing like going away to a desert with all new stuff. But then I think: what if there's a *chance* I'd would feel better? Do I do it if there's a 2 percent chance it'll work? How do we make these painful decisions??

Would love to hear others ideas -- and also know if there are any truly reliable methods of finding out if one is sensitive to mold without going to extreme measures.

The fact is that black mould IS a toxin. As far as I know it takes no prisoners and n o one is not harmed by it. The damage may not show for longer with some but it will be happening. and the symptoms mimic and exaggerate ANY existing issues, not just M.E. SO no need to go to "extreme measures" .Staying in any place affected by mould is ... stoooopid. And I did not even bother to test as for types etc. All are damaging. My sinus issues cleared totally after I left. And other symptoms lessened.

 

[Marigold7]

In

Am glad you said this @Marigold7 and I think a lot of people do not realize that black mold can actually kill you. It can cause bleeding in the lungs and is a common cause of SIDS (crib death) in babies.



In my case, we discovered through three sets of separate testing that our former rental had 19 kinds of mold including toxic black mold being circulated through our a/c system. Won't bore everyone with the story but the level of mold (through swab testing) on our belongings (clothing, electronics, furniture, etc) was highest ever seen by mold testing company with black mold at 8.0 ppb (parts per billion) and positive was above 0.02 ppb. We moved and lost almost everything we owned in mid 2015 but I do not believe I would be here writing this today if we had not.

This does not surprise me. It was when I moved the settee and found the entire wall behind it covered in black mould... No need to testing. Just OUT!

 

[Gingergrrl]

No need to testing. Just OUT!

In our case, we needed the testing for the mold specialist (doctor) and for legal reasons b/c the owners of our rental were uncooperative and becoming hostile.

 

[Marigold7]

In our case, we needed the testing for the mold specialist (doctor) and for legal reasons b/c the owners of our rental were uncooperative and becoming hostile.

OK but this is Ireland .. simpler! My landlord then was totally illiterate and I do nto see drs at all anyways. There was no need as it was clear what was wrong. I simply gave notice and left.

 

[Esther12]

I also just finished the book. It's funny how we can all read the same book and get different take-aways!

I didn't feel like she underplayed the mold at all.

Just in case that related to my saying I thought Julie was better at pointing out the lack of evidence for mold stuff than most of those who end up telling their anecdotes about recovery in the media, I haven't read her book, and was only commenting on the brief articles and interviews I've read.

I almost always cringe at the way the media can focus in on personal stories over evidence, and think that this is often harmful for patients fighting against junk-science and prejudice.

Although it does sound like Julie's book could do more harm than good that still doesn't tell us anything definitive about her ill-health.

 

[roxnhead]

Here we go again! Just chasing my tail. Initially thought my weakness and fatigue was due to black mold. Then a diagnosis of CFS/ME due to high titres of EBV, Coxsackies etc...Now a diagnosis of MCAD- due to high tryptase and crazy hypersensitivities .No wait, latest labs show 4 different molds that are IGG highs. This CFS/ME girl knows that mold avoidance is mandatory!!

 

[Lily Valley]

I don't doubt mould intolerance is real. I don't doubt that some kinds of mould can be very harmful to anyone, regardless of whether they have ME or some other illness, or are otherwise healthy people.

I've read the book Through the Shadowlands now. I didn't get the impression that Julie was claiming that mould avoidance is the answer to ME. Actually, the way I read it, she didn't even say it was the answer for her.

As I understand it,

Spoiler: Click to reveal hidden text

The main key to her (partial?) recovery was the psychic who helped her heal her childhood traumas, which incidentally made the mould issues go away almost completely. As I understand it, it wasn't fundamentally about mould for her, but mainly about unresolved childhood traumas.

Also, as I understand Julie's comments about her sessions with the psychic, the spiritual healing wasn't the main part of it; it was the underlying psychotherapeutic aspect of it that made the real difference.

The impression I got was that the psychological aspect was the thread running through the whole story, with several clear milestones where her physical health improved substantially when her emotional/psychological health had an upward turn (for various reasons, such as, for example, letting go of stressful thought patterns or unhelpful beliefs).

Those of you who have actually read the whole book (as opposed to comments based only on interviews etc), I'd love to hear your thoughts on this. Did you understand it differently?

I have to admit I was very surprised and deeply disappointed by Shadowlands... I felt it was completely different from how it has been marketed, different from what we have been led to believe it's about... It's not at all what I expected or hoped for The framing concerns me.

Seen "only" as an autobiography, though (as opposed to "a book about ME written from a scientific perspective"), it's a great read. So yes, I'm having very mixed feelings about it.

I totally agree and I'm very disappointed because it's not at all the book I got the impression of when I read interviews with J Rehmeyer or read reviews. I keep asking myself, "did we read the same book?"

It's not a book that explains ME/CFS in a scientific way. It's not about ME/CFS or about mold intolerance. I get the impression that it's about some kind of phobia of mold and of getting contaminated/exposed and how to get rid of the phobia using psychotherapy.

Very confusing and misleading, it will not help people understand ME/CFS, I'm afraid it could even make things worse for us and also for people with mold intolerance (or those who have both).

 

[SueJohnPat]

I am moving. This week. I will go into details about this after the move.
I am doing very very well.

 

[Gingergrrl]

I am moving. This week. I will go into details about this after the move. I am doing very very well.

Glad to hear that you are doing so well and best wishes for your move!

 

[SueJohnPat]

@SueJohnPat was your onset sudden (viral) or gradual?

It was weird. I had three periods of mild/ moderate fibromyalgia like pain for about a month that went away Over the coarse of 8 months.
Then in September after getting a routine flu shot ( I got one at work) I went down like a rock.
I struggled on but only lasted until March . My career as a community pharmacist was over.
My original diagnosis was fibromyalgia. I also was severely fatigued.
I had high Epstein Barr tigers ( past? Infection? )
I was able to get rid of the pain after taking Celebrex with Valtrex for 6 months. However if I tried to exercise ( like gentle swimming then I was in bed for 3 days)

 

[Jesse2233]

@SueJohnPat seems like something in that flu shot pushed you over. Cognitive issues as well?

 

[SueJohnPat]

The cognitive issues are still what is hanging on.
I am not sure I noticed that much in the beginning. I was in such severe pain and felt totally exhausted. The doctors mentioned fibromyalgia/ depression. I did not feel depressed but I started crying a lot and would just blurt out whatever came into my head. This caused issues with my in laws and some friends.
I guess everyone just got sick of me being sick all the time.
After going to Death Valley in November. I was able to exercise without pem for the first time since becoming ill 7 years Ago.
Physically I am much stronger. If I am " clear of
mold i feel great and feel vibrant and " smart" again.
If I get a mold hit. I just crumble and have trouble speaking. I keep water in my car. If I dump water over my head and get out of exposure I go back to " normal " in a few minutes. .
This dramatic senisitivity to "mold" exposure only started happening after I started avoidance. But overall I am gaining really slot of ground physically and mentally.
For example I recently moved. I packed up the house I was able to function all day . I got up and took a shower and got dressed with an hour. I have not find this in 7 years.

I can go through a day without having to break it up and worry about crashing.

It is very dramatic like getting hit with nerve gas or like I am being drugged. . My husband has witnessed this and he is now a believer.

I am in an apartment now. We sold our home . Did have mold which we remediated but not the terrible toxic mold that you read about.

I have been here a few weeks. My husband and sons moved in after selling the house. I had a bad day today. I told my husband and kids to get rid of their stuff or I will rent another apartment and move in by myself.

 

[grapes]

I agree that these two illnesses, although symptomatically similar, should be differentiated, not least because an incorrect diagnosis can lead to the wrong treatment.

Just recently I read this article, in which Ryan explains how he had been misdiagnosed with ME/CFS and fibromyalgia for 10 years, when in fact he had chronic inflammatory response syndrome (CIRS) induced by mold. Once he had the correct diagnosis, and followed 3 aspects of Ritchie Shoemaker's protocol for treating mold-induced CIRS, he was back to near full health in just 5 months.

The Shoemaker protocol he followed included:

• Cholestyramine and Welchol to bind to the mycotoxins in the intestines, and pull them out of the body.
• The no amylose diet.
• The antibiotic BEG nasal spray to get rid of a MARCoN infection in the nasal and sinus mucous membranes (MARCoN = multiple antibiotic resistant coagulase negative staphylococci) infections.

The full 11 step Shoemaker protocol for mold and biotoxin induced illness (which Shoemaker calls chronic inflammatory response syndrome, or CIRS) is given here. The protocol is described in more detail here.



The difference between ME/CFS and mold-induced CIRS is that the former is typically triggered by viruses, and the latter is typically caused by the mycotoxins secreted by mold (or by other biotoxins like toxic blue-green algae, or ciguatera toxin).

Because mycotoxins are non-living, they can be removed (detoxified from the body), which is something you cannot easily do with viruses. This makes CIRS from mold probably more treatable than ME/CFS.

Shoemaker believes that people with certain susceptible genetic predispositions (based on their HLA DR type), are unable to properly detoxify mycotoxins and other biotoxins from their body, so these biotoxins accumulate in the body, and cause CIRS. Shoemaker says that anyone with these susceptible HLA DR types will be prone to getting mold illness when exposed to mold, because their body cannot properly detoxify the mycotoxins. Shoemaker finds it requires cholestyramine to remove the biotoxins in such patients with susceptible HLA DR types who have developed CIRS from mold exposure.

Though the idea of people being genetically unable to detoxify biotoxins is controversial: this document is critical of doctors who use cholestyramine to detoxify mycotoxins and other biotoxins, saying that the short half lives of most mycotoxins do not support the theories of doctors like Shoemaker who say that mycotoxin get "stuck" in the bodies of individuals with certain susceptible HLA DR types.

By the way, if anyone wants to test whether they have high levels of mycotoxins or other biotoxins in their body, a free online visual contrast sensitivity test (VCS test) can give you a good indication. The online test takes about 5 minutes to complete.

This VCS test looks at your eye's ability to detect subtle differences in shades of gray. The retina has neurons in it which do the light sensing and information processing, and the VCS test checks the functioning of these neurons of the eye. This check of functioning is a way of gauging the health of these neurons — a health which may deteriorate if they are being affected by neurotoxins like mold toxins.

But in spite of the differences between ME/CFS and mold-induced CIRS, it is plausible that ME/CFS may involve both mold exposure and viruses in some cases. So it would be a good idea for ME/CFS patients to take the free VCS test linked to above, which will give some indication of whether they are currently affected by biotoxins such as mold toxins.

However, even if an ME/CFS patient is not currently affected by biotoxins, it is conceivable that during the time they first caught their ME/CFS-triggering virus, they could have been exposed to and affected by biotoxins, and these biotoxins may have modulated the immune system in such a way that it enabled the virus to trigger ME/CFS. Some mycotoxins have been shown to increase the Th2 immune response, which may thus make it harder for the body to fight viruses.

And if an ME/CFS patient is continually exposed to mold, possibly this Th2 response may worsen their viral infections. Note that you can be exposed to mold from your environment; but Dr Joesph Brewer theorizes that ME/CFS patients may have a chronic mold infection in their nasal and sinus mucous membranes, which would constantly be creating mycotoxins.

Also, if an ME/CFS patient's symptoms are relieved by mold avoidance, then that could simply be due to a mold allergy that they have. In this case, it does not mean the mold is causing the ME/CFS, but just making you feel worse, as allergies tend to do.

This is VERY good information and may have now changed my life! I fit all the qualifications for CIRS, in spite of the fact that I passed the VCS test last Fall.

 

[SueJohnPat]

I agree that biotoxin illness and me/cfs should be differentiated . This needs more research .

My Gp and my doctors never mentioned anything about biotoixn illness. Except my pain management doctor who referred me to Dr Rea in Texas. My other doctors scoffed at him for this . This lead me to research ' mold ' exposure. I think that this illness can occur in clusters makes sense from a mold perspective also.

Envioromental illness is not on the radar of doctors except for " allergies". This seems to be a huge oversight.
Just got back from London / Paris. Started coughing again at Philadelphia airport.
Cognitive impairment today. Ugh Excellant information Hip. Interesting about the th 2 shift. I have Hashimoto's and this illness seems to be like a bad accident too many things go wrong and the plane flies into the mountain.

 

[aaron_c]

It has never seemed a possibility to me for many reasons, including my sudden onset, the lack of any "location effect" (feeling better in different places, and the fact that I've moved three times since I got sick and haven't felt better or worse in any one of them),

I'm currently reading Eric Johnson. His take--and I think Julie Rehmeyer follows this school of thought generally--is among all the mycotoxins out there there are a few that are incredibly potent and long-lasting, so just keeping your bedding, or your books, or your computer as you move from one place to another can mean that you stay sick. And that even once you get rid of those things (and others), if you've had them in your new house for any period of time they may cross-contaminate that house. He basically thinks that a small amount of these "super-toxins" can make people chronically ill, and that larger amounts of these same toxins don't really make it all that much worse.

He also thinks that, once you get clear of whatever problematic toxins haunt you you may not get better immediately. He compares it to someone with celiac disease stopping gluten, that the main "tell" is that when re-exposed you develop an acute reaction that was not present before.

Shoemaker on the other hand thinks that once people get sick enough it becomes a self-reinforcing cycle, at least until MSH leves are repaired with VIP. He thinks people with one or two HLA haplotypes are particularly susceptible to this, and he draws a direct line to at least a subset of ME/CFS.

For what it's worth I have heard that Julie Reymeyer is not "out of the woods" entirely as far as mold goes, although that might just mean that she is generally healthy but still susceptible to acute reactions.