ME is not mould intolerance; mould intolerance is not ME

[healthybunny55]

Hi guys,
My partner and I strongly suspect that we have an issue with mould toxicity, as we have both been developing the same symptoms for the past 4 months. We moved to this old property 7 months ago and things started to deteriate. I have listed our symptoms in my first post, but I just wanted to quickly ask...if we can't afford mould testing (or we could, but then we wouldn't be able to buy a new bed, etc), and are moving in 3 weeks anyway, would you advise us to throw away our bed and other belongings (and put the most valuable ones into storage) anyway?!

I feel like I want to be safe, but I don't want to be crazy paranoid when mould might not be the issue here. We do feel a lot worse when we're in the bedroom or kitchen, and we feel even worse when the oven is on. Perhaps it's not even mould but VOCs or something. We stayed at a friend's house for only one night and felt better, and were wearing new clothes and had showered. The following morning we put on our clothes from our house and started to feel dizzy again. Is it possible to have such shifts or are we imagining things? I thought that people need to avoid mould for at least 2 weeks to see a difference. Also, what if it's a mould allergy rather than biotoxin illness...or a non-toxic strain? Surely just moving would suffice? We do have neurological symptoms, however.

My preference would be to buy a new bed and mattress and put all of our clothes and valuables into the spare room in our new house. However, I dont know if that's a bad idea and we need a storage facility. This property is very old (in the UK) and I know that there was a small leak last year. Also, the neighbours have been doing building works and we started to get worse after then. The neighbours themselves seem to be coughing non-stop and all have lung infections. I'm pretty sure that something is wrong with the house, but just can't decide whether moving is enough, or getting rid of all of our stuff is necessary.

Thanks!

 

[aaron_c]

@healthybunny55 I've been trying to figure out if mold or related biotoxins might be behind my illness. I've come to the conclusion that the only sure-fire way to know is to do a mold avoidance sabbatical a la Eric Johnson. His book A Beginner's Guide To Mold Avoidance, coauthored with Lisa Petrison, tells you how to do it.

That said, there are a few things you can try:

1. Visual Contrast Sensitivity (VCS) Test: It's free and you can do it from home. It does have a decent rate of false-negatives though.
2. ERMI / HERTSMI-2 test for your home. If you're moving then I wouldn't do it, but it might tell you something about your new home. Although experienced CIRS-type mold testers seem to have a number of tests they use in specific situations, this appears to be the best one for testing your house. Shoemaker says that "spore-trap" type tests are worthless.
3. C4a is a blood test that seems to pretty decently indicate whether you are currently being exposed to biotoxins. But Shoemaker has some very specific ideas about how to run it and it's not available everywhere. Plus Shoemaker doesn't use it exclusively for this purpose, and I haven't yet figured out when the test might give a false positive or negative.

 

[SueJohnPat]

I second the mold sabbatical and Erik Johnson's book. I never had any testing done on my house or myself for mold. I did a sabbatical and it changed my life. We have sold our home and I finally convinced my husband to get rid of absolutely everything from the old house. This took about 6-8 months to happen but I am 80-90 % recovered.
But , I still get mold " hits " and am hypersensitive right . I am going by how I feel. This is what is working.

 

[Snowdrop]

The conversation about avoiding mold and health improvements from doing so is straying from the actual topic of the thread which is, 'Are mold illness and ME the same or different illnesses'

It would be best to start a new thread or use one of the many threads already on the topic IMO.

 

[SueJohnPat]

You are right Snowdrop. I was offline for a few weeks and came back to this thread.
I did have two separate 2 day exercise studies done and it was confirmed I had " Cfs" .
There may of coarse be different subsets and different triggers. Finally it looks like research should clarify this eventually. As we all know at least the psychological " treatments" are finally being debunked.

 

[SueJohnPat]

I think it is relevant to this thread . The first exercise test was with Dr Betsy Keller at Ithica College. My results were consistsnt with Cfs. At the time I was suing Cigna for benefits. I had to pay about 2000 dollars.

The second test was a study being conducted by Dr James Baranuik at Georgetown University. I took a train down to dc. . At the time I was pretty impaired and it was an ordeal to travel by myself. He was comparing Cfs to gulf war illness by making us do intense exercise followed by an MRI ( it was a much more powerful Mir that is used in regular medicine . The name escapes me) This was done 2 days in a row as well as cognitive testing. My scores were consistsnt with Cfs.

I never had severe Cfs. . But for about 4 years I could only leave the house a few times a week ( on a good week) and then I would wilt if I sat upright for over 2 hours. I would have to go lie down all the time. My illness started out as fibromyalgia which was treated successfully with Valtrex and Celebrex for 6 months.

I think that for me personally avoiding mold is a way to a better quality of life./ functional recovery. Whether or not " mold illness" is "Cfs" I don't think there is enough information to say yet. I have emailed Dr Baranuik about my success with mold avoidance and he seemed interested.

 

[fireflymd]

@healthybunny55 I've been trying to figure out if mold or related biotoxins might be behind my illness. I've come to the conclusion that the only sure-fire way to know is to do a mold avoidance sabbatical a la Eric Johnson. His book A Beginner's Guide To Mold Avoidance, coauthored with Lisa Petrison, tells you how to do it.

That said, there are a few things you can try:

1. Visual Contrast Sensitivity (VCS) Test: It's free and you can do it from home. It does have a decent rate of false-negatives though.
2. ERMI / HERTSMI-2 test for your home. If you're moving then I wouldn't do it, but it might tell you something about your new home. Although experienced CIRS-type mold testers seem to have a number of tests they use in specific situations, this appears to be the best one for testing your house. Shoemaker says that "spore-trap" type tests are worthless.
3. C4a is a blood test that seems to pretty decently indicate whether you are currently being exposed to biotoxins. But Shoemaker has some very specific ideas about how to run it and it's not available everywhere. Plus Shoemaker doesn't use it exclusively for this purpose, and I haven't yet figured out when the test might give a false positive or negative.

I can attest to the fact that the C4A test is very often handled incorrectly by lab techs, which will cause falsely elevated results.

My integrative doc diagnosed Lyme based upon a markedly elevated C4A test result.

When I contacted my lab, the tech had not spun my blood within minutes, did not freeze it right away, and did not have any dry ice in the drawing station to send it frozen to the main LabCorp lab (as recommended by National Jewish Lab who performs the test).

The main LabCorp lab then sent out my sample, frozen on dry ice, to Nat Jewish, so they ran the test, but my blood had not been processed properly before this step.

I have learned some of these specialty lab tests are simply not processed properly by the drawing lab due to lack of time before they have to draw the next patient's blood. My blood sample sat in the lab way too long before the tech had time to do what was needed to be done to the sample, then was unable to send it to the main lab frozen as it needed to be, because they did not keep dry ice in the lab.

So now I look at these lab values with skepticism. Just my own experience.

 

[aaron_c]

I can attest to the fact that the C4A test is very often handled incorrectly by lab techs, which will cause falsely elevated results.

Thanks Fireflymd, that's quite helpful. Are you a doctor? I ask because other than when I had my blood taken (by LabCorp) I was not able to talk to a human, it was quite frustrating.

 

[dannybex]

I second the mold sabbatical and Erik Johnson's book. I never had any testing done on my house or myself for mold. I did a sabbatical and it changed my life. We have sold our home and I finally convinced my husband to get rid of absolutely everything from the old house. This took about 6-8 months to happen but I am 80-90 % recovered.
But , I still get mold " hits " and am hypersensitive right . I am going by how I feel. This is what is working.

I'm glad you're doing better -- that's impressive! I disagree though that one needs to get rid of everything in order to recover. I know that's what Erik says, but it's worth noting that 30 years later, he is still hypersensitive to mold/mycotoxins, while some others who followed a less 'extreme' model are able to tolerate it (typically after dealing with other triggers or infections) and have moved on with their lives. Lucky ducks...

Also, many, maybe even the majority of those who follow the 'extreme' model, develop severe MCS, something they never had a problem with prior to getting rid of everything. Even you said earlier in this thread that "This dramatic senisitivity to "mold" exposure only started happening after I started avoidance." Anyway, no one's been able to explain that MCS phenomenon, but it definitely exists, but only with 'extreme' avoidance.

Lastly, @aaron_c, @Valentijn has done a lot of research into Shoemaker's 'dreaded' mold gene hypothesis, and found it doesn't add up. IMO, if 25% of the population has this gene, then tens if not hundreds of millions more would be seriously ill due to mold.

 

[dannybex]

The conversation about avoiding mold and health improvements from doing so is straying from the actual topic of the thread which is, 'Are mold illness and ME the same or different illnesses'

It would be best to start a new thread or use one of the many threads already on the topic IMO.

@JohntheJack I believe mold can be, without a doubt, one of a number of triggers for developing ME/CFS. There is never one 'cause' IMO...that's why it's so difficult to treat. To ignore environmental factors, whether they're mold, heavy metals, pesticide exposures, fungicides, etc., is to ignore studies linking these with chronic health problems.

 

[SueJohnPat]

I'm glad you're doing better -- that's impressive! I disagree though that one needs to get rid of everything in order to recover. I know that's what Erik says, but it's worth noting that 30 years later, he is still hypersensitive to mold/mycotoxins, while some others who followed a less 'extreme' model are able to tolerate it (typically after dealing with other triggers or infections) and have moved on with their lives. Lucky ducks...

Also, many, maybe even the majority of those who follow the 'extreme' model, develop severe MCS, something they never had a problem with prior to getting rid of everything. Even you said earlier in this thread that "This dramatic senisitivity to "mold" exposure only started happening after I started avoidance." Anyway, no one's been able to explain that MCS phenomenon, but it definitely exists, but only with 'extreme' avoidance.

Lastly, @aaron_c, @Valentijn has done a lot of research into Shoemaker's 'dreaded' mold gene hypothesis, and found it doesn't add up. IMO, if 25% of the population has this gene, then tens if not hundreds of millions more would be seriously ill due to mold.

I have never had the “ mold “;genome testing . Frankly I am going by intuition and feel which is totally contrary to my 23 years as a community pharmacist and my 5 plus years of university. If double blind studies were not available and proven it was pure hokum. ( my pre me/ cfs thinking)

However. —-Since putting all of our old possessions in storage and move to an apartment ( which got cross contaminated by some posessions from old “ mold “ home . — I am at a motel currently) I am 75-80 % improved. My 17 year old son who developed add and failed out of private school ( in hindsight about the same time I developed me) is off all of his psyche meds after 3 months is being clear our old home. He is getting good grades again and is thriving. He was on 3 psyche meds.

No longer on anything and his psychiatrist agrees with me. My 12 year old developed add and depression when I developed “ cfs”. . He is now 17 doing great with no meds” I am/ was a pharmacist not afraid of meds .
My youngest has Aspergers the mold did not seem to bother him . Maybe the Aspergers had an effect which “ protected” him. Husband had severe depression getting better after removal from “ mold house and on probiotics and binders.

We are moved nj to an area closer to the coast with new posessions.
I have absolutely no idea . This is just our experience. It took my friends of 25 years about a year to understand this, my husband is still absorbing this whole phenomenon. It seems the more scientifically trained you are the greater the skepticism. Which I totally understand.
Just putting this out there.

 

[dannybex]

Great to hear @SueJohnPat, and proof that one doesn't necesarily need to do 'extreme avoidance' in order to improve. 75-80% must feel great.

 

[aaron_c]

Lastly, @aaron_c, @Valentijn has done a lot of research into Shoemaker's 'dreaded' mold gene hypothesis, and found it doesn't add up. IMO, if 25% of the population has this gene, then tens if not hundreds of millions more would be seriously ill due to mold.

I've definitely been swayed by what valentijn has had to say about Yasko, so I'd be curious to hear what she has to say. But Shoemaker doesn't claim that this is wholly responsible, and he says that we need an acute something to start the process. Which I know, makes the whole thing hard to prove or disprove, at least until he fleshes that bit out.

As I understand it he mainly uses the "dreaded haplotype" to explain why some people don't initially respond to his treatment protocol.

 

[dannybex]

I've definitely been swayed by what valentijn has had to say about Yasko, so I'd be curious to hear what she has to say.

Here's a good sample Aaron:

http://forums.phoenixrising.me/index.php?search/44289847/&q=dreaded&o=date&c[user][0]=3723

 

[SueJohnPat]

Great to hear @SueJohnPat, and proof that one doesn't necesarily need to do 'extreme avoidance' in order to improve. 75-80% must feel great.

I think the extreme avoidance is a good idea and would probably get me better faster , However not everyone has to go that extreme ( or can practically, I am putting up with some symptoms because of my family but if it becomes too much I will take another long sabbatical in the desert)

In my new home I have a large fenced in Porch and a large shed that I can secretly sleep in if necessary. I also had the house tested for mold( not full proof but better than nothing. ) I have hung out in tHe house in rainy weather and I feel good in it. It is very well maintained . It is small built in 1946. I prefer drafty to a “ sealed “ house.” I have a plan b snd plan c. We move in next month. We are bringing nothing with us.

This is a very individualized effect. Perhaps it was a chemical in the old home that reacted with mold to make bioweapon X. This seemed to have caused psychiatric symptoms in 3/4 of us. Some may have to go extreme ( who knows I still may ) . I think reading about the extreme part may overwhelm people and then they might not do anything.

The home borders on Wharton State Forest in NJ. I still think it is important to make a big effort to spend time outside. I feel the best when I tent camp but i can’t drop everything and go live in the woods. My husband does work in a moldy building. Each day he immediately takes his clothes off ( bags them) and showers.

I understand that the science is weak for this. I experimented on myself with support from my family doctor. I am making progress. This is just really weird .

 

[shoponl]

An Alzheimer's researcher, Dr Dale Bredesen, identifies "IAD Inhalational Alzheimer's Disease" where neurological symptoms but not "typical allergy" symptoms arise from mold exposure and CIRS (chronic inflammatory response syndrome); I can see possible overlap with CFS/ME symptoms, such as brain fog. Seven Alzheimer's patients are discussed in this paper:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4789584/

"...Another possibility is that the genetics may favor a chronic neurodegenerative syndrome over a more typical immune-mediated systemic illness. Evaluation of the HLA-DR/DQ haplotypes in eight patients with IAD may provide some support for this possibility: whereas about 95% of CIRS patients display one of the four multiple-biotoxin-sensitive haplotypes (4-3-53, 11-3-52B, 12-3-52B, 14-5-52B) or one of the seven mold-sensitive haplotypes (7-2-53, 7-3-53, 13-6-52A, 13-6-52B, 13-6-52C, 17-2-52A, 18-4-52A), six of the eight IAD patients displayed both a multiple-biotoxin-sensitive haplotype and a pathogen-sensitive (mold or Lyme) haplotype (of the other two, one was an ApoE4 homozygote and the other was an ApoE4 heterozygote with a mold-sensitive haplotype). Based on the frequencies of these haplotypes, the chance of picking eight people at random and having six of them display both one of the uncommon multiple-biotoxin-sensitive haplotypes and one of the pathogen-sensitive haplotypes is less than one in one million. Finally, a third possibility is that the neurodegenerative phenotype may represent a late-stage effect, analogous to the tertiary lues syndromes, whereas the typical CIRS symptoms may be analogous to the primary and secondary syndromes. These three possibilities are not mutually exclusive."

 

[grapes]

An Alzheimer's researcher, Dr Dale Bredesen, identifies "IAD Inhalational Alzheimer's Disease" where neurological symptoms arise from mold exposure and CIRS; I can see possible overlap with CFS/ME symptoms.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4789584/

I definitely had memory loss after mold exposure. It was related to the high inflammation I had as a result of inhaling gobs of mold spores.

 

[element252]

I got sick after living in highly contaminated toxic mold apartment that had sigificant water damage. Testing revealed extremely high counts of Stachy, Chaetomium, and various species of toxic Aspergellious such as Niger and Versicolor. I know this exposure was the catalyst to my illness. But its not allergy as that would indicate a proper immune response, but instead its toxicity. And keep in mind its not just mycotoxins in a water damaged building that proliferate. There are also gram-negatibe bacteria, aminocytes and just a wide assortment of biological contaimnents that could contribute to development of chronic illness in the right host or gentically suspectible person. My ife was also there but didnt get sick like me, instead she got a rash and was coughing up blood.

These things can cause changes in ribosome and mitchondria function and even alter RNA, if they infect or get inside cells. Obviously a lot of research needs to be done. But all I have to go on is my own experience. A mold avoidance lifestyle is not easy neither and has its own stressors. I mean if anyone is physically able they can try mold avoidance or a mold sabbatical and see if that helps at all, but its not easy.

 

[Hip]

An Alzheimer's researcher, Dr Dale Bredesen, identifies "IAD Inhalational Alzheimer's Disease" where neurological symptoms but not "typical allergy" symptoms arise from mold exposure and CIRS (chronic inflammatory response syndrome)

Interesting how in the paper you linked to, they found that Dr Richie Shoemaker's protocol for CIRS mold illness led to improvements (or at least stopped the progression) of mold-induced Alzheimer's.

 

[SueJohnPat]

My husbands brother diagnosed with dementia. He is 56. He is a mechanical engineer he had to retire. We just moved out of mold and left all of our possessions behind. Me and my son were mentally effected. My son diagnosed add depression and flunked out private school, Three months after moving out of mold and 35 miles east of the city my son got straight A.s made honor roll for the first time and does not have to rake Amy medications and his psychiatrist is releasing him from care. I no longer have pseudobubular “ crazy” episodes. My husband experierencing treatment resistant depression. We were a happy family before all this “ mold “ started.

I wish I could convince my brother in law to go out to Death Valley for about a month or two. Might not do anything but they gave him 3 years to live. I still must sleep outside on my new “ sleeping porch but this is a small price to pay for getting my life back.