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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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Any serious cases with remission?

grapes

Senior Member
Messages
362
Mold has immunomodulatory effects. But if you had major mold exposure as an apparent trigger of your ME/CFS, you might want to consider whether you have chronic inflammatory response syndrome (CIRS) rather than ME/CFS. Both diseases have similar symptoms, but CIRS may be more treatable, using the Shoemaker protocol for CIRS.

Well good grief, I appreciate the tip about CIRS. I'll look into it.
 

Murph

:)
Messages
1,799
Here's a blog by a friend of mine.

http://sweetpotatolambandcabbage.blogspot.com.au/2010/09/

She had CFS and then recovered. Now, of course, such a statement deserves to be looked at closely. And some people will scoff at it. Some people will say that the very fact that she recovered is in itself proof that the complaint was never CFS. However. I've spoken to her about her symptoms and I'm very confident she had classic PEM. For several years I never saw her because she was home in bed.

I don't know if she has no symptoms now - she moved overseas - but I see plenty of photos on facebook suggesting she is doing a lot of cycling. She certainly seems healthier than me, and healthier than before, when she was always at home in bed.

Here's a quote from towards the end of the blog:

"I feel bloody amazing, thank you very much. It would be a lie to say I've never felt better, but the truth is that I haven't felt better for about 6 years now, and that's a bloody long time. Last weekend I went to two parties on Saturday night, and stayed out until 4am. On Sunday, hungover and sleep deprived, I packed for a week long trip (many thanks to D who did all my cooking for the trip!). Then I got up early on Monday, drove and worked all day, stayed up late, and did it all again for the next 4 days. On Saturday morning I cleaned the bathroom (I'm not sure what got into me there), I was social through the grand final BBQ, I slept for a couple of hours in the evening, got up and kicked on. Then I got up on Sunday and cleaned the kitchen (it's Spring, that's the only explanation I can think of). I have spent the week at uni, doing my thing, keeping normal hours. I went to a gig last night, stayed up til 1am and got plastered. Now I'm hungover at uni remembering what that feels like. Yeah, it doesn't feel great, but it was fun at the time!

The above sequence of events may not seem unusual to you. Maybe a little tiring, maybe less that you would do in a normal week, I don't know. But it's pretty incredible for me. I have chronic fatigue syndrome. The kind of behaviour I've been exhibiting for the last (nearly) 2 weeks would normally have put me in bed after 3 or 4 days."


It's also worth nothing that the dietary changes she lists in the blog aren't the only changes she made. She had a good CFS doctor who suggested a range of other interventions too.
 

grapes

Senior Member
Messages
362
Mold has immunomodulatory effects. But if you had major mold exposure as an apparent trigger of your ME/CFS, you might want to consider whether you have chronic inflammatory response syndrome (CIRS) rather than ME/CFS. Both diseases have similar symptoms, but CIRS may be more treatable, using the Shoemaker protocol for CIRS.

Yup, Hip, you get a gold star. That may be me. I have many of the criteria.
 

Hip

Senior Member
Messages
17,824
@grapes I just wrote to the www.survivingmold.com website (which is either run by Dr Ritchie Shoemaker, or is run on his behalf, I am not sure which), asking whether it is common for patients with CIRS symptoms to be misdiagnosed with ME/CFS. If this misdiagnosis is common, then perhaps we need to make this more known on this forum, so that CIRS patients misdiagnosed with ME/CFS can get the correct treatment.
 

grapes

Senior Member
Messages
362
@grapes I just wrote to the www.survivingmold.com website (which is either run by Dr Ritchie Shoemaker, or is run on his behalf, I am not sure which), asking whether it is common for patients with CIRS symptoms to be misdiagnosed with ME/CFS. If this misdiagnosis is common, then perhaps we need to make this more known on this forum, so that CIRS patients misdiagnosed with ME/CFS can get the correct treatment.

Oh believe me, it is now so clear that CIRS is what I have instead of CFS/ME that I'm going to write my story as I get farther along in THIS recovery...which WILL occur.

And Shoemaker says it is common to be misdiagnosed. Read an example of a group of people he talked about.

And I'm appalled how we are forced to figure things out on our own to the degree we are. In spite of me being a very proactive person who digs and researches everything...it took being committed to coming here for weeks and weeks, posting in a lot of strings about my issues before someone like you came along and totally hit the nail on the head! Damn.

In just 24 hours since you first gave me a NAME to what I clearly have, I figured out WHY I crashed so badly last week (the sugar in cookies I ate which I had baked for company, raising insulin which pushed my systemic inflammation even higher) and supplements I needed to immediately get on to get the inflammation down. Because of those supplements, my deep, miserable debilitating fatigue, which was especially horrific yesterday, went away today. And I've also learned in the last 24 hours how to better use the Cholestyramine I have, working around the thyroid meds I'm on better, which I have to take three times a day.

The irony is that I already knew I still had mold in me--a physician I was working with long distance did the right tests last September. I saw the problem. But he never gave me the CIRS name, did NOT explain how aggressive I needed to be with those inflammation markers, never explained what supplements I needed to take to get those markers down, never explained some of the things I saw Shoemaker mention on his site (like the VIP spray), and was terrible about following through...so I gave up on him and was on my own and have been quite miserable with fatigue/compromised levels of energy...knowing I still had mold in me, but thinking it was the root cause of "CFS/ME"..so it needed to be the latter I explored. Nope....that acute mold inhalation I had a few years was root cause of me having CIRS and SO many related issues, including my mito being messed up to the core, as well as my methylation messed up, and high RT3.

This is the website I dug into last night, listing all the supplements I needed to start on immediately (or raise, like Curcumin, which I was on, but nowhere near enough): http://www.herbaltransitions.com/TreatmentOfCIRS.html
 

Hip

Senior Member
Messages
17,824
before someone like you came along and totally hit the nail on the head!

I only myself recently became aware of the need to clearly differentiate between ME/CFS and CIRS after reading Ryan's story of his CIRS being misdiagnosed as ME/CFS. Before that, I sort of thought of the ill effects of mold as a possible aspect of ME/CFS, but not as a clearcut separate disease.

But now I am starting to appreciate that CIRS is something different to ME/CFS (at least in terms of treatment, anyway).

So my current thought are that if your problems are purely caused by mold, then you have CIRS; if your problems are caused by a virus, then you have ME/CFS; and if you have a combination of mold and virus problems, then that probably might be a combination of ME/CFS and CIRS, where both antiviral and anti-mold treatments might be required.

By the way, in this post I was looking at the possibility of using a dehumidifier in the home, as an alternative to going to the desert to avoid mold.
 

grapes

Senior Member
Messages
362
I only myself recently became aware of the need to clearly differentiate between ME/CFS and CIRS after reading Ryan's story of his CIRS being misdiagnosed as ME/CFS. Before that, I sort of thought of the ill effects of mold as a possible aspect of ME/CFS, but not as a clearcut separate disease..

Then consider yourself a messenger who saved me! For one, I can now walk on the RIGHT path towards real recovery. Second thanks to reading about CIRS, I now get it WHY I crashed five days ago so badly. And third, I was able to stop the MISERABLE fatigue I've had five days now thanks to immediately starting the right supplements this morning and amount. Curcumin in higher amounts was a big factor.
 

Knockknock

Senior Member
Messages
212
You know, there is actually hope if CFS is the result of disrupted pathways. The latter is what Organic Acids Tests reveal--the disrupted pathways. And for most, they claim they are treatable with various recommended nutrients...though in my case, some of the amounts they recommend are not enough. For example, many of disrupted pathways in my energy point to the need for CoQ10, but the amount they recommended is FAR too little for me. I was considered functionally deficient by Spectracell for my CoQ10, yet I was on 1000 mg ubiquinol!!

The same goes for those disrupted pathways that are genetic in origin--they still are recommending certain nutrients to help those.

I also think my mito may have been harmed from mold, and later high copper...those two could be root causes. And I'm attempting to remove the lingering mold now, plus treat potential damaged mito from the copper. We'll see. Also, I'm pretty sure the copper detox also removed a lot of nutrients out of me, and I'm current working to get them all up. Those nutrients are VERY important and most are B vitamins.
Hi ,
the disrupted path ways are do to mutations, once your mathyliation cycle is altered, you Dna is altered, your gene expresion is altered your entire body change, your body don't process the nutrients the way it should to have a healthy immune system , them your inate cell mediated immune system becomes disfuntional defective , your macribiome is disrupted, your gut bacteria , your antiviral Rnase L, your entire genome change, all this allow viruses to reactivare and shade in a diferent way than the healthy population, with out healthy cell mediated immunity gut bacteria fongus candida its a domino effect.
that is why many people get better addressing some of the issues..
unfortunable what is causing the damage still there, that is why total remisión cure is unlikely even stem cells after having spectacular results a year later people fall back to the illness .
 

grapes

Senior Member
Messages
362
Hi ,
the disrupted path ways are do to mutations, once your mathyliation cycle is altered, you Dna is altered, your gene expresion is altered your entire body change, your body don't process the nutrients the way it should to have a healthy immune system , them your inate cell mediated immune system becomes disfuntional defective , your macribiome is disrupted, your gut bacteria , your antiviral Rnase L, your entire genome change, all this allow viruses to reactivare and shade in a diferent way than the healthy population, with out healthy cell mediated immunity gut bacteria fongus candida its a domino effect.
that is why many people get better addressing some of the issues..
unfortunable what is causing the damage still there, that is why total remisión cure is unlikely even stem cells after having spectacular results a year later people fall back to the illness .
Actually, though some disrupted pathways can be due to active mutations, others can be due to inadequate levels of certain nutrients. By taking those certain nutrients to bring my levels up, I reversed a few of those blockages as revealed a year later when I redid the OAT test. But yes, I have others that may be my DNA.
 

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
I am tackling my chronic fatigue in multiple ways. I know that mold inhalation a few years probably is still in me creating havoc, so I'm working on removing that and getting ready to do a consultation with a mold expert for further tweaking. I also know that the high copper I had in 2015 then 2016 probably also made me worse and could have harmed my mito---so I'm taking several mito supplements and will peruse what selfhacking says. I also take several supps based on two different OAT tests, 2016 and 2016. I'm waiting on the results of an Amino Acid test and will act on those results. Spectacell also revealed nutrients I need to bring UP. And I'm improving my methylation issues which all this stress caused problems with. I'm determined to beat this.....

Sounds like you're doing the all the right things, @grapes

I did a lot of testing, addressing, experimenting.

I have a supplement graveyard of literally hundreds bottles from Vitamin A to Zinc.

The supplements and testing and diet are part of it... the psychological healing is another. Even if you had an untraumatized clean slate coming into the illness (which is not typical) -- the stressful experience of the illness itself can psychologically afflict you with a very depressed outlook and a host of self-limiting beliefs which must be eliminated in order to recover.
 

grapes

Senior Member
Messages
362
Sounds like you're doing the all the right things, @grapes

I did a lot of testing, addressing, experimenting.

I have a supplement graveyard of literally hundreds bottles from Vitamin A to Zinc.

The supplements and testing and diet are part of it... the psychological healing is another. Even if you had an untraumatized clean slate coming into the illness (which is not typical) -- the stressful experience of the illness itself can psychologically afflict you with a very depressed outlook and a host of self-limiting beliefs which must be eliminated in order to recover.

You are so right about the depression. It overtakes me often, thinking this is the best I'll ever be. But at the same time, I'm lucky that if I just ride with the depression a few days, I get over it every time to start researching again and treating whatever I find. I'm lucky.

And guess what...I JUST found out that what just might be going on for me more than anything else is called CIRS. aka Chronic Inflammatory Response Syndrome. It completely fits everything--symptoms, labs, past experience with acute mold exposure. And the symptoms are extremely similar to CFS. And in addition to those symptoms/labs/past exposure to mold....I also discovered that by taking heavy duty anti-inflammatory supps yesterday morning, they nearly totally eradicated the intense fatigue I've had that day. So hopeful.
 

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
You are so right about the depression. It overtakes me often, thinking this is the best I'll ever be. But at the same time, I'm lucky that if I just ride with the depression a few days, I get over it every time to start researching again and treating whatever I find. I'm lucky.

And guess what...I JUST found out that what just might be going on for me more than anything else is called CIRS.

FYI - Selfhacked.com has a couple good posts on mold CIRS and they offered consultations with someone who knows a lot about it.
 

grapes

Senior Member
Messages
362
FYI - Selfhacked.com has a couple good posts on mold CIRS and they offered consultations with someone who knows a lot about it.
Thank you. Sadly, selfhacked is now charging $500!!! No way. I decided to instead go straight to the top cheese--Dr. Shoemaker. Waiting on a consultation time. It's VERY expensive too but nowhere near as bad as selfhacked, so hope I can get everything I need from him in 30 minutes to tweak what I've already learned.
 

Knockknock

Senior Member
Messages
212
Actually, though some disrupted pathways can be due to active mutations, others can be due to inadequate levels of certain nutrients. By taking those certain nutrients to bring my levels up, I reversed a few of those blockages as revealed a year later when I redid the OAT test. But yes, I have others that may be my DNA.
If you don't mind to share with us what you were able to reverse and how??that sounds interesting...
 

grapes

Senior Member
Messages
362
If you don't mind to share with us what you were able to reverse and how??that sounds interesting...
Hi. Under Fatty Acid Metabolism, I had high Suberate in 2015--the recommendation was to take l-carnitine. When I redid the OAT in 2016, it was now good, as I had been taking carnitine all that time. I even had mid-range adipate 2015, and by 2016, it was in the lower part of the range.

Next under Energy Production, I had high Cis-Aconitate in 2015. By 2016, I had lowered it well. I think that was due to the Arginine I had been taking.

There are others I hadn't improved yet.

And at this point, I'll bring up something strange: on both the 2015 and 2016 OAT, I had very high amounts of phenylalanine, aka PKU! I just got back my results for amino acids testing, and phenylalanine was now in the lower area of the range. Huh?? I wonder if it was lowered due to being committed to taking enzymes with every meal. I'll eventually do a 3rd OAT and see what is going on.
 
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Messages
6
Hello there! I realize this is an old post and I’m newer to the forum but I had very similar results and I’m wondering now it being about 2 years later how your treatments with carnitine helped your results and symptoms? I have very similar findings in my OAT as well as Nutreval that I’m still trying to sort out myself and plan to make a post to gain feedback but searched “carnitine, adipate, suberate” and this was the only post that appeared. Thanks so much! And I hope you’ve seen much improvement <3
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Do you know a case that is serious lead a normal life? If so, you could tell me a little about that person and how he managed to recover


I think that the cases in remission have been because it has been people who have received good treatments from highly specialized doctors in this, it is a little unviable for the majority of patients economically speaking
I was 90% bedridden and on the verge of suicide until I got high dose IVIG and then went into remission a month later, but I had to put myself into some serious debt.