ME/CFS in remission from Mold Avoidance

[footballteamfan]

Hello community,

just an update - I am now on full remission from ME/CFS by doing strict mold avoidance. I can exercise til I pass out and will not get any PEM. Zero. This is in stark contrast to late 2020 where even a shower had the potential to destroy me.

I am not healthy by any means, as I am plagued by Lyme and Co and some other residual mold symptoms. And mild CCI. But my quality life is incomparable.

This leads me to two *anecdotal* conclusions:

1. CCI is not the only trigger for PEM. Clearly, it’s possible to have CCI, do mold avoidance, and remit from any PEM. Not that I’m specifically endorsing it, but Cleary it’s possible.

2. Biotoxins are a big factor for a non inconsequential subset of the ME population. I would not say mold is the *cause* of ME, but there is undeniably a relationship there that needs further research.

have no incentive here to promote woohoo therapies, just want to provide some hope that remission is possible. This lifestyle is hard, lonely, and quite frankly maddening at times. But the ability to exercise once more makes it all worth it.

 

[Rufous McKinney]

1. CCI is not the only trigger for PEM. Clearly, it’s possible to have CCI, do mold avoidance, and remit from any PEM. Not that I’m specifically endorsing it, but Cleary it’s possible.

I suspect this may be an age and duration of illness issue.

Its fascinating....pondering it all.

I've had Epstein Barr it seems for at least 57 years. Mild for: 40 years (using the approved terms, nothing mild about it, but relatively speaking)...around 2018- I deteriorated a whole lot, and now rarely leave my apartment and can't really do much of anything.

I believe that the collagen breakdown, stimulated somehow by the viral infection...or post viral conditions in the body- leads to these problems building over time. So mild CCI when your young- maybe we somewhat rebound or simply do not experience the intensity of symptoms- which worsen and the brain stem gradually collapses more with time and age. Or ligaments weaken. CCI intensifies.

 

[PisForPerseverance]

Thank you for sharing. Congrats on your health. Happy for you. I hope your health can return to not needing to do that at some point so that hardship can fall away too. I get it. There is a relationship you're right, and with mcas as well, and it's good to talk about it. Eds (connective tissue disorder that often causes cci), mcas, me/cfs, and several other conditions commonly occur together, and we'll understand the relationship in the future, and the relationship with biotoxins as well. I wanted to share because I think there's confusion about this, not necessarily by you two but I know that many are trying to figure out if cci is an issue for them and if they can treat it to help their ME, and my impression is that more understanding is needed. I know I needed it as I was first understanding it and being diagnosed.

Eds causes joint instability which includes various levels of cci for many. So that is a common cause of cci for many that don't have ME. It's not just an ME thing. They may be not affected much by it or can have other conditions it contributes to, and can be very impaired as it can be progressive for anyone. Even eds physical therapy can be enough for some to keep their cci not affecting things much. Just depends. There are other treatments for joint stability as well. The fact that previous joint instability often turns into the disease of eds after triggering events, along with getting ME, is something that people are paying attention to. Joint hypermobility runs in my family but mine turned into eds type 3. I vaguely know that there can be other causes of collagen dysfunction after a triggering event or illness, like you're talking about @Rufous McKinney but I don't know about it. Hopefully this helps put things into perspective for any needing it that I needed when I was first getting diagnosed.

 

[hapl808]

How do you practice strict mold avoidance, and did you do any binders or other treatments? I've had environmental allergens (mold or MCAS) and have suspected mold could be an issue, but my house tests fine with the various Shoemaker approved methods. I think it has a slight musty smell, but no one else smells it and I've usually done worse when I've temporarily tried to move to other locations.

 

[footballteamfan]

How do you practice strict mold avoidance, and did you do any binders or other treatments? I've had environmental allergens (mold or MCAS) and have suspected mold could be an issue, but my house tests fine with the various Shoemaker approved methods. I think it has a slight musty smell, but no one else smells it and I've usually done worse when I've temporarily tried to move to other locations.

in a casita travel trailer in nature. I still work full time so need a place I can get cell signal.

I threw away all my possessions, bought new clothes and a new car, and moved from New York City to Arizona.

since the move, I’ve had miraculous health gains. So clearly, remova from my sickening environment was the key.

yes, I take binders (welchol and charcoal), but nothing helped until I moved out of my toxic apartment.

 

[footballteamfan]

I suspect this may be an age and duration of illness issue.

Its fascinating....pondering it all.

I've had Epstein Barr it seems for at least 57 years. Mild for: 40 years (using the approved terms, nothing mild about it, but relatively speaking)...around 2018- I deteriorated a whole lot, and now rarely leave my apartment and can't really do much of anything.

I believe that the collagen breakdown, stimulated somehow by the viral infection...or post viral conditions in the body- leads to these problems building over time. So mild CCI when your young- maybe we somewhat rebound or simply do not experience the intensity of symptoms- which worsen and the brain stem gradually collapses more with time and age. Or ligaments weaken. CCI intensifies.

just for a point of clarification, when I say “mild CCI”, my neck still hurts like crazy 24/7 and i literally feel my brain stem being compressed.

with that said, I just don’t believe that’s the root cause of my ME. I’ve had severe exercise intolerance since way before any neck pain.

thanks for your input, and I really hope you get to recover your health some day 🙏

 

[Dufresne]

Congrats, and thanks for reporting. Lisa Petrison always said that people with ME/CFS often lost their PEM when practicing extreme avoidance. I've yet to see this happen in myself but I can see how it could be possible. I will be getting back to the extreme in the next few weeks to give it another go.

 

[Actium]

Thank you for sharing. Have you lived in the same apartment since you got ill?

 

[footballteamfan]

Congrats, and thanks for reporting. Lisa Petrison always said that people with ME/CFS often lost their PEM when practicing extreme avoidance. I've yet to see this happen in myself but I can see how it could be possible. I will be getting back to the extreme in the next few weeks to give it another go.

I’ve spoken to others who have experienced the same. Ability to exercise miraculously recovers when in pristine environments.

 

[footballteamfan]

Thank you for sharing. Have you lived in the same apartment since you got ill?

have not and do not plan to. Living in the desert until I’m able to find suitable longer term living situation.

 

[footballteamfan]

Thank you for sharing. Congrats on your health. Happy for you. I hope your health can return to not needing to do that at some point so that hardship can fall away too. I get it. There is a relationship you're right, and with mcas as well, and it's good to talk about it. Eds (connective tissue disorder that often causes cci), mcas, me/cfs, and several other conditions commonly occur together, and we'll understand the relationship in the future, and the relationship with biotoxins as well. I wanted to share because I think there's confusion about this, not necessarily by you two but I know that many are trying to figure out if cci is an issue for them and if they can treat it to help their ME, and my impression is that more understanding is needed. I know I needed it as I was first understanding it and being diagnosed.

Eds causes joint instability which includes various levels of cci for many. So that is a common cause of cci for many that don't have ME. It's not just an ME thing. They may be not affected much by it or can have other conditions it contributes to, and can be very impaired as it can be progressive for anyone. Even eds physical therapy can be enough for some to keep their cci not affecting things much. Just depends. There are other treatments for joint stability as well. The fact that previous joint instability often turns into the disease of eds after triggering events, along with getting ME, is something that people are paying attention to. Joint hypermobility runs in my family but mine turned into eds type 3. I vaguely know that there can be other causes of collagen dysfunction after a triggering event or illness, like you're talking about @Rufous McKinney but I don't know about it. Hopefully this helps put things into perspective for any needing it that I needed when I was first getting diagnosed.

great points all around. Totally right - CCI happens all the time in the absence of ME.

Jeff and Jen both recovered from ME by undergoing neurosurgery. I and many others from mold avoidance. It seems ME, at least to me, is an overarching condition with many sub-divisions.

I am checking out regennex for my CCI, so it will be interesting to see how everything responds to this type of treatment.

will keep everyone updated.

 

[PisForPerseverance]

great points all around. Totally right - CCI happens all the time in the absence of ME.

Jeff and Jen both recovered from ME by undergoing neurosurgery. I and many others from mold avoidance. It seems ME, at least to me, is an overarching condition with many sub-divisions.

I am checking out regennex for my CCI, so it will be interesting to see how everything responds to this type of treatment.

will keep everyone updated.

Yup definitely about the sub divisions. I have some thoughts about regenexx to give you the benefit of my experience so far that I hope helps you in your journey. I'm beginning injections from a local orthopedic doctor specializing in eds using guided ultrasound, and he's charging a fraction of what a local doctor trained by regenexx was going to charge. This one was recommended by my eds pt along with another doctor. The other doctor I was recommended worked with the Canadian Olympic team! (Of some sport). There are other doctors who do these treatments besides regenexx (except the one in the throat which they do only when their other prolotherapy and prp in that region fail or don't give as much improved as needed. Only they do that one right now in this country as far as I'm aware, but that should change going forward).

I just don't have good thoughts about regenexx in general, the articles the main doctor writes are snarky and egotistical, and it may be that all the doctors trained by them overcharge a lot because it's the same business model they're part of. I'm not sure. Not to say they don't do some good things for people. I don't have experience with them beyond those experiences. I did read some negative reviews of the behavior at the clinic but I don't remember what it was. Some stuff to think about... Yeah will be curious to see how you do with whatever you choose!

 

[max_yazhbin]

Hello community,

just an update - I am now on full remission from ME/CFS by doing strict mold avoidance. I can exercise til I pass out and will not get any PEM. Zero. This is in stark contrast to late 2020 where even a shower had the potential to destroy me.

I am not healthy by any means, as I am plagued by Lyme and Co and some other residual mold symptoms. And mild CCI. But my quality life is incomparable.

This leads me to two *anecdotal* conclusions:

1. CCI is not the only trigger for PEM. Clearly, it’s possible to have CCI, do mold avoidance, and remit from any PEM. Not that I’m specifically endorsing it, but Cleary it’s possible.

2. Biotoxins are a big factor for a non inconsequential subset of the ME population. I would not say mold is the *cause* of ME, but there is undeniably a relationship there that needs further research.

have no incentive here to promote woohoo therapies, just want to provide some hope that remission is possible. This lifestyle is hard, lonely, and quite frankly maddening at times. But the ability to exercise once more makes it all worth it.

Sorry to hear you are still suffering with lyme, here is my experience with lyme: https://forums.phoenixrising.me/threads/my-experience-with-lyme-disease.83923/

 

[frozenborderline]

This leads me to two *anecdotal* conclusions:

1. CCI is not the only trigger for PEM. Clearly, it’s possible to have CCI, do mold avoidance, and remit from any PEM. Not that I’m specifically endorsing it, but Cleary it’s possible.

2. Biotoxins are a big factor for a non inconsequential subset of the ME population. I would not say mold is the *cause* of ME, but there is undeniably a relationship there that needs further research.

interesting
i dont have energy to currently tell my whole story but there are parallels

i did mold avoidance despite having cci, although i think i had more severe cci than many, and it still helped, and affected many of the symptoms that i assumed were solely caused by cci, like sound sensitivity or pots. and yet, there was a ceiling for my improvements from mold avoidance. i assume that mold and all of the plethora of toxins can cause an inflammatory response in the brainstem specifically that mimics mechanical compression, theres lots of science to back it up. different pathology, same endpoint?
beyond the damage mold and toxins can do to ligaments, the crossover btwn symptomology with mold toxicity and cci has a pretty simple explanation imo.

thanks for sharing your story.
i never achieved full remission from mold avoidance alone but its a very valuable treatment, the most impressive ive done YET, i am aiming to have cci surgery though, but to continue to do "extreme" mold avoidance as i believe its necessary baseline for healing, even if you do other interventions.

https://walkerstorz.com/me-cfs-etiology/

this is a theory of me/cfs i find compelling, and it discusses how inflammation in brainstem and mechanical compression (which causes "inflammation", like any tbi), could cause same symptomology

 

[frozenborderline]

lets stay in touch, im constantly trying to figure out more anecdata and theory for the intersection of cci and mold illness, and i may even want to interview you about your experience for a podcast

 

[bensmith]

The only camping site near me is at a lake. Is that ok enough to see about mold? Id like to try back yard but with the traffic i couldn’t tolerate the noise, possibly not fumes don’t know about that.

Might try backyard but i couldnt sleep through the night, so maybe for like one day. But i hear that isnt enough time so might skip it. I layes outside for the first time in 1.5 hears(wow.) and my nose did clear up, if that means anything.

Xant i borrow friends camping gear or did you buy new?

Hope its ok to post here. I live in oklahoma if that is relavabt. My town has moderate to poor air quality, sometimes good.

the lake is right outside of town.

 

[frozenborderline]

The only camping site near me is at a lake. Is that ok enough to see about mold? Id like to try back yard but with the traffic i couldn’t tolerate the noise, possibly not fumes don’t know about that.

Might try backyard but i couldnt sleep through the night, so maybe for like one day. But i hear that isnt enough time so might skip it. I layes outside for the first time in 1.5 hears(wow.) and my nose did clear up, if that means anything.

Xant i borrow friends camping gear or did you buy new?

Hope its ok to post here. I live in oklahoma if that is relavabt. My town has moderate to poor air quality, sometimes good.

the lake is right outside of town.

Lakes can be good or they can be bad. However I know of a few people whove done pretty well in Oklahoma want me to put u in touch with them? They would have more specific locations. You're also a closer drive to northeast nm than many ppl, but there should be some good Oklahoma locations. You'll have to remind me tho, I'm brain fogged and forgetful

 

[gregh286]

Hello community,

just an update - I am now on full remission from ME/CFS by doing strict mold avoidance. I can exercise til I pass out and will not get any PEM. Zero. This is in stark contrast to late 2020 where even a shower had the potential to destroy me.

I am not healthy by any means, as I am plagued by Lyme and Co and some other residual mold symptoms. And mild CCI. But my quality life is incomparable.

This leads me to two *anecdotal* conclusions:

1. CCI is not the only trigger for PEM. Clearly, it’s possible to have CCI, do mold avoidance, and remit from any PEM. Not that I’m specifically endorsing it, but Cleary it’s possible.

2. Biotoxins are a big factor for a non inconsequential subset of the ME population. I would not say mold is the *cause* of ME, but there is undeniably a relationship there that needs further research.

have no incentive here to promote woohoo therapies, just want to provide some hope that remission is possible. This lifestyle is hard, lonely, and quite frankly maddening at times. But the ability to exercise once more makes it all worth it.

It's possible it's carbon monoxide avoidance...mould secondary

 

[bensmith]

Lakes can be good or they can be bad. However I know of a few people whove done pretty well in Oklahoma want me to put u in touch with them? They would have more specific locations. You're also a closer drive to northeast nm than many ppl, but there should be some good Oklahoma locations. You'll have to remind me tho, I'm brain fogged and forgetful

Ok thanks. I cant travel anytime soon way too sick, but sure maybe i can get the contact info? Where in nm?

 

[frozenborderline]

Ok thanks. I cant travel anytime soon way too sick, but sure maybe i can get the contact info? Where in nm?

There's so many good spots in nm, it's sort of like where would I even start... But that stuff is more well known than the spots in Oklahoma. If you join practical mold avoidance on Facebook, and ask about it there is one couple that has explored Oklahoma more than others. I think the woman's name is Laura platt. I believe some have had good results even in Tulsa or OKC, but better in the Wichita mountains. But I don't recall every detail from memory. And I have always wanted to try black mesa and thought it might be pristine. However , northeastern new Mexico also Has a lot of promise. Lots of the high Plains surrounding Raton, in new Mexico. Is great. I've only gone within about a ten mile radius of Raton in most directions but I have the hunch that s lot more of the surrounding area is good