Three years ago Joey’s brain was mush and his body was broken. A graduate from a top University Joey couldn’t walk for 10 minutes without suffering for two days, he had to use a wheelchair at time and his chemical sensitivities limited him significantly. He was not a happy camper.
Who is your treatment match?
He’d spent more than $200,000 trying to get well. He’d seen some of the best ME/CFS doctors. He didn’t have many options left.
Then, as he was considering whether to take out a $30,000 loan for an experimental drug, a possibility popped up that probably ranked about a nine out of ten on the ‘weird, radical, totally unaccepted by the medical profession’ scale’, but it was simple and it was cheap……. and it worked.
Five days after embarking on his trial he was walking again… His head was clearing. He pushed himself on a long walk one day – it was miserable all the way – but the blow-back the next day, the dreaded post-exertional malaise was gone. His body was recovering. Now he’s lifting weights (WEIGHTS!). Joey still has neurological issues, but he’s physically pretty darn strong now. He found a partial treatment match.
It turned out there was a treatment that was a significant fit for Joey. It wouldn’t work for everybody, but it worked for him. He didn’t get it from his doctors (even his ME/CFS experts). He found out about it on the internet, but it took time and it almost didn’t happen in time.
He started HealClick so that other people could find their match – their treatment fit (if it’s out there) – more quickly than he did. Think of HealClick as a big database of what does and doesn’t work. The bigger it grows the better chance each of us have of finding the treatment that gets us out of the wheelchair or bed onto the hiking path and even into the weight room. Wouldn’t that be something?
Sooooo he just went camping in the desert for 3 days? I am confused…. Is it just bc he got away from the environmental toxins? Hey I’m down….
Actually it took him five days before he really noticed the difference but that was essentially it. Very basic.Very simple. An amazing story. He got a chemical free trailer produced and lived in that. This isn’t’ the most common way of overcoming ME/CFS but it certainly does happen. I have several similar stories in my Recovery Stories database.
I want to be clear that I couldn’t go tent camping in the desert. I was too sick, and in fact, when I actually tried to go tent camping, I got worse.
I had to do it the exact way that was outlined in the video above, under the right conditions, without bringing anything with me.
Yes, it sounds like his chemical sensitivities must be awful, and maybe he has that reaction to mold, too.
Is he still living in the desert? Is it his permanent home now?
Seems like he is unattached (but he does not say, only mentioned his mother regarding his suicide option), so he could move and stay out there, alone or in one of the communities I knew about from long ago with MCS folks.
That web site for HealClick has just a short video, then asks for sign up. Guess I hoped to read a bit more before jumping in.
Sarah
Joey is living in his chemical free trailer in Las Vegas now.
You can find out more on HealClick on this blog here.
Thanks Cort. I do not read every blog you post, and clearly missed that important one, for understanding this one. Your writing output far outpaces my reading skills, nowadays.
Still more to think about, as I had real help once only, do not have current lab tests (no doctor finds them worthwhile now), just worsening daily function. It seems like this is for people who see doctors as I did in the diagnosing stage, and have lots of test results, rather than verbal symptom descriptions, with continual proof of the PENE phenomenon.
Hi there,
For anyone that is curious about the details, I’ve actually documented them transparently on HealClick.
As for what HealClick does:
First, patients use our tracking system to share basic biographical info, conditions, symptom ratings, and treatment ratings. Then we match them up by how much they have in common! The goal is show you treatment reviews from your best patient matches.
Our matching capability is still a work in progress, but users with multiple diagnoses are already finding us to be a valuable central tool to see treatment reviews for all their conditions. You can learn more about our goals at http://igg.me/at/healclick/
Looks like a cool website, have signed up, I like how it categorises treatment reviews. You’re going to get heaps of questions asking what Joey’s treatment was!
>It turned out there was a treatment that was a significant fit for Joey. It wouldn’t work for everybody, but it worked for him.
I would like to suggest that at this time, we do not have enough evidence to know one way or the other whether what Joey did would work for everyone else with ME.
So far, I’ve yet to see anyone with ME who put a lot of effort into extreme mold avoidance according to the instructions not benefit from it to an impressive degree. And I have observed dozens of people try this, up close.
Joey actually was likely the most difficult case that I have seen. It took him a very long time trying to work around all his reactivities (heat, cold, noise, light, chemicals in addition to mold) to get to the point where he was clear enough to see any benefits.
Most other people have a much easier time of it, if they put that much effort into it.
I am not saying that I know for sure that what Joey did would work for everyone. We don’t have enough case studies for that, systematically evaluated.
And I’m certainly not saying that everyone with this illness _should_ do what Joey did. Extreme avoidance is a hell of a life that not everyone would want to go through. It also generally requires substantial practical and financial resources that not everyone has access to.
But I do not think it’s appropriate to say at this time, without more study, that for sure what Joey did would not work for everyone with ME. Certainly, there may be exceptions, but I have not heard reports of them so far.
Eventually, I hope, scientists will start to study the mycotoxin hyperreactivity phenomenon in a systematic way, so that we can see how universal it is and how important it is in this disease. If it indeed (as I believe) is universal and important for everyone with ME, then that may provide insights into new ways to address the problem that do not necessarily involve extreme avoidance.
It would be nice if that were to happen sooner rather than later. If we accept without evidence that those benefiting from avoidance are the exception rather than the norm though, then likely we’ll never find out because this topic will keep getting pushed to the back burner.
Thank you for publishing a blog on Joey’s story, however, Cort. 🙂
Best,
Lisa Petrison, Ph.D.
Executive Director
Paradigm Change
http://www.paradigmchange.me
Let’s just say then that other people have gotten well without doing what Joey did. I have over 100 recovery stories that suggest there are a variety of ways to recover from ME/CFS.
I would believe that extreme mold/chemical avoidance would not work for everyone in the same way that antivirals, gut flora manipulation, Lightning Process etc. will not work for everyone. I think it’s asking too much of any protocol that it work for everyone in a disease that’s defined by symptoms. It’s great to find anything that works for some people. That’s a huge step forward. To hear Joey go from very ill to being able to lift weights is astonishing and it definitely needs more study.
That’s certainly a fair statement, Cort.
I imagine that many people who have not tried it can be helped by this protocol. Several of the recovery stories I have are rather astonishing turnarounds by doing what Joey did.
I do think we need to have a place where the protocol is laid out in detail. Is there one on the web?
However, one study that I would like to see done is whether people who try to improve as a result of any other sort of ME/CFS treatments are more likely to do so if they are living in a good environment rather than a really bad one.
People who pursue avoidance often benefit from ME/CFS treatments that they cannot tolerate when still getting problematic exposures. I benefited from many other treatments (such as antivirals, parasite treatment, Lyme treatment and various detoxification strategies) myself, once I got clear — even though I was not able to tolerate any of those treatments while living in the moldy house.
I have little doubt that Mike Dessin benefited strongly from neural therapy, for instance. I benefited very much from that treatment myself.
But prior to starting neural therapy, Mike moved away from a horrifically moldy environment, leaving all his possessions behind, into an apartment that felt good to him.
If he’d tried the neural therapy back in the bad environment, or with contaminated possessions nearby, would the neural therapy have helped him at all? That kind of question would be a good thing to find out, in a rigorous way with a larger sample size (and a variety of treatments).
If one of the reasons that ME/CFS treatments work so erratically is because they only work when people are not getting a huge amount of exposure to particularly bad toxins, then that would be a good thing to know about.
Especially if a goal is to get such treatments approved.
Personally I think it could only help. I’ve wondered if all some people with insomnia need to do is to sleep outside. After a couple of sleeping inside I start tossing and turning and waking up very early. That all gets resolved when I sleep outside.
Also, I will be happy to send a free PDF copy of the already published Kindle book, “Back from the Edge,” about this topic to anyone requesting it and mentioning this blog. Please send requests to paradigmchange@yahoo.com.
http://www.amazon.com/dp/B00EDGEHT2
Thanks again for writing about this topic!
The closest thing to a “manual” at this point is Part 2 (“Extreme Avoidance”) of the free compilation of Erik Johnson’s writings, titled “The Role of Toxic Mold in Chronic Fatigue Syndrome.”
http://www.paradigmchange.me/erik-johnson/role-of-toxic-mold-in-cfs.pdf
This is the first document that I gave to Joey when he started getting interested in this as well.
A brief overview summary of those writings is on the blog, “My Chemical-Free House,” written by an avoider of both chemicals and mold named Corinne.
http://mychemicalfreehouse.blogspot.ca/2013/01/practicing-mould-avoidance.html
Any sorts of questions about mold avoidance, no matter how basic or advanced, may be submitted to the Facebook group, Avoiding Mold. The questions are answered by people who state that they have achieved significant improvements from mold avoidance of any sort (as well as by selected physicians and remediators with knowledge about toxic mold).
https://www.facebook.com/pages/Avoiding-Mold/378638055595495?
Note that the page is set up to prevent all arguments amongst contributors. People qualified to answer the questions (all posted anonymously) simply answer them, without discussion. Readers can decide for themselves which answers and responders they want to take more seriously. The forum has been up and running for about five months, and so far, so good!
You would be welcome to contribute answers if you like, Cort, since (despite not pursuing Erik-style avoidance) my understanding is that you have benefited from avoidance yourself. Please join us!
The Q&A’s from the Avoiding Mold page are being organized into a summary volume (in Kindle and PDF formats) that the Paradigm Change organization will be making available for free within the next few months.
Just a little clarification here.
Above, Cort writes:
>Let’s just say then that other people have gotten well without doing what Joey did. I have over 100 recovery stories that suggest there are a variety of ways to recover from ME/CFS.
And my intention when I wrote “That’s certainly a fair statement, Cort” was to respond to that.
Somehow I missed this part of his statement though, and didn’t realize that I was responding to it too (or that it would look like I was responding to it).
>I would believe that extreme mold/chemical avoidance would not work for everyone in the same way that antivirals, gut flora manipulation, Lightning Process etc. will not work for everyone. I think it’s asking too much of any protocol that it work for everyone in a disease that’s defined by symptoms. It’s great to find anything that works for some people. That’s a huge step forward. To hear Joey go from very ill to being able to lift weights is astonishing and it definitely needs more study.
As I said above, I don’t think that we have enough evidence to know what percentage of the population of M.E. sufferers are hyperreactive to toxic mold and thus would likely benefit from Joey’s approach. It could be 100%, or it could be somewhere less than 100%. Until we get more research, there is no way to to know.
So I am looking forward to that seeing that research done.
Good morning Cort,
I know that this may be asked a lot, but is there any way you could share your recovery cases?
Thanks
rd
Lisa, you write ‘I’m not saying that I know that for sure what Joey did will work for anyone’ then go on to say ‘But I do not think it’s appropriate to say at this time, without more study, that for sure what Joey did would not work for everyone with ME’. This sounds to me that you do believe this will work for everyone, with the second sentence contradicting the first. It seems a matter of semantics and in truth as it has worked so well for Joey, you and others in your heart you are pretty sure it will.
I think I am more open to trying it if the stance is we don’t know for sure this will help everyone but it is certainly an approach worth considering as it may help. Could there not be subsets? And the mold/chemical reactivity people are a subset? As Cort says studies are merited as some people have such a fantastic response
I agree with Cort that more studies are merited.
Based on the cases that I’ve seen so far, I believe that the percentage of people with ME who are ridiculously reactive to toxic mold is very high, perhaps even 100%. And thus, that all of those hyperreactive people could be helped a great deal by getting clear of it.
We won’t know for sure what the percentage is until the research is done though.
Thanks Lisa. I am sorry as I somehow missed the bit where you wrote ‘I would like to suggest that at this time, we do not have enough evidence to know one way or the other whether what Joey did would work for everyone else with ME’. This seems a reasonable stance.
Have you worked with anyone who has done extreme mold avoidance with no improvement? I also wonder whether the people who approach you are consist of many who suspect mold may be a problem and so success rates are higher. However, I agree research studies are needed to assess this approach properly as it is amazing how some people do fantastically well from mold avoidance.
Does your approach include detoxing and if so how does this work? Can strict avoidance be enough for the body to start detoxing itself? Many thanks
It does seem to be the case that getting to a clean location can prompt the body to start detoxing all on its own. This seems to be true for healthy people as well as those who have ME or similar diseases. For instance, often fasting retreats designed to prompt detox are held in relatively clean desert locations. I think there’s a good reason for that.
In order for people to really benefit from this approach, it seems that all of their “detox channels” need to be working reasonably well. One issue that I have seen repeatedly, for instance, is with people who suffer from fibromyalgia as well as ME actually feeling worse in terms of pain and brain inflammation when they get to a good location. What appears to be happening is that the good location prompts the body to release toxins from their stores, but then the toxins get backed up in the lymphatic system (due possibly to the constriction of the fascia putting pressure on the lymphatic vessels/nodes and thus impairing flow).
For these people (and I was one of them), it may be necessary to fix the drainage problem before real improvements can be made. Anecdotally, things that have helped people with this: bodywork (such as massage, yoga or neural therapy), repairing gut dysbiosis (homemade kefir or yogurt, probiotics, dietary changes, antifungal herbs/drugs), drainage herbs, homeopathic drainage remedies.
I think this was the situation with Mike Dessin, for instance. After he moved to a good apartment without any contaminated possessions, he actually briefly got worse. That could have been from the stress of moving, but I think it also could be that it was as a result of releasing toxins without drainage working. Fortunately, a few weeks later, he started seeing his neural therapy practitioner and almost immediately made very fast improvements.
So drainage is important. However, I’m in agreement with Dr. Paul Cheney that compared to ME, fibromyalgia (which I believe to be a drainage problem) is relatively easy to treat. And a number of people experiencing this problem (including me) indeed have treated it effectively, while doing avoidance.
Other than with the drainage issue, I’ve not followed the progress of anyone who has not benefited to a significant extent from avoidance when done according to the instructions. As was the case with Joey, it can take a while to get the pieces in place (especially when other sensitivities such as heat/cold/noise/light/chemicals) are issues, though.
I can’t speak to the stories of people who have tried this and not benefited without providing me with all the details though. For instance, contaminated possessions can be enough to keep people totally sick, and some locations that seem like they should be great actually are really terrible. So when I hear anecdotal stories that “This did not work for me,” I don’t know whether to conclude that those people are not reactors or that they just didn’t get clear enough.
Probably it is more likely that people who consider pursuing this already have noticed that they are reactive to toxic mold. But many people (including me) had no idea that it might be an issue, before they gave it a try. So I’m not sure what to say about that, without more systematic study.
Really, the role of toxic mold in this illness would not be expensive or difficult to study. For instance, here is a proposal that I wrote to Open Medicine Institute looking at whether mold exposures are a risk factor for acquiring the illness. So far, they have taken the position that other areas of study are more important. Maybe with the increased interest in this topic, they will decide to pursue it after all.
http://www.paradigmchange.me/support/ermi-study-proposal.pdf
Study of whether people with this illness indeed are often or always hyperreactive to small amounts of mold would not be difficult to do either, if “science” decided the question was worth studying.
In general, it’s my belief that detox is crucial. People may feel immediately a lot better if they just get exposure way down, but to get closer to real wellness (including decreasing reactivity), getting the toxins out of the body seems key. I spent several years doing two-hour interviews with people who had gotten to “mostly recovered” status via _any_ kind of treatments, and all the ones that I found who got well and stayed well commented on how much toxin they had managed to excrete once they got the pieces in place to do so. So figuring out how to help people to detoxify effectively and quickly is a real interest of mine. Hopefully someday soon, “science” will put its collective mind to that question as well!
I am glad to have found this site. I have had FM for 30 years, diagnosed. Lots of muscular pain and spasms. I too was a very busy person. Type A I guess. I moved into this house built in 1849 and I was here a year and a couple months and fell completely ill. Pain, fatigue, falling down. CF of course. I asked my Dr. if it could be mold related and he felt there was no correlation. I was sick for 9 months and forced myself to go back to work as I’m single. I am a nurse. Every day is agony. My Dr. seems to think that my career is somewhat toxic and it probably is due to the nature of the health care beast. I do love it though. I think I will pursue the mold aspect more closely. I have always been sensitive to medications, lotions, detergents, perfumes, tapes, etc. Thank you so much for all you do to represent those who can not afford to speak out..=I do not want to be disabled.
Good luck!
It seems probable to me that joey was only in the mild/moderate category given that he was able to WALK for 10 mins. I cant even stand for 10 seconds so undertaking this kind of protocol would be impossible for me and other severe patients. Also I think we need to consider what has caused the total collapse. IN JOEYS CASE it seems most likely hat it was due simply to toxic overload. We are all just s different. There is no one size fits all therapy.
Hi Vickie,
I addressed this mistakenly in a comment to Nico below, but this interface doesn’t allow me edit 🙂
First: my disease had an acute viral onset. Severe mono with a 2 week fever, totally bedridden, lymph nodes so swollen my mother didn’t recognize me at the airport. This is not one of the gradual onsets, and I can’t pinpoint getting sick due to a toxicity exposure.
“You are probably right that I’m in the moderate category due to the fact that I could walk for 10 minutes. And more than anything, that tells you just how severe this condition is.
For the record, I have never stated that the locations effect is a cure for our illness. All I have is my experience, and the same goes for the patients sharing our 1500+ treatment reviews since launch. I, like many, was skeptical about this whole protocol for years and had to serendipitously experience it myself. I often wonder if I would’ve saved myself years and thousands of dollars if I had been more focused on the actual experiences shared, rather than the implications of them being true for the disease as a whole.”
Joey it’s great you have found a treatment that has helped you so much and now you have set up Healclick to help others. Do I take it from your last sentence that you are saying we can only try these things before dismissing them? I take it you don’t think mold avoidance would work for everyone but something worth trying to at least rule out? Many thanks
No no, that would be incredibly irresponsible of me to suggest.
I just mean that when I heard about this treatment for the first time, I thought this couldn’t have anything to do with me. I was convinced that only antivirals would resolve my illness, and in retrospect I wish I had been focused on the merits of the treatment and case studies presented to me.
I am definitely not in a position to tell any patient what to try or not try. That’s not what I do, and that’s not something we condone on HealClick either. Patient-sharing is a way for patients to safely, openly share their experiences. HealClick’s task is to better organize this information, but the ultimate decision will always be up to you and your doctors (both legally and logically speaking)
Lisa, you write ‘I’m not saying that I know that for sure what Joey did will work for anyone’ then go on to say ‘But I do not think it’s appropriate to say at this time, without more study, that for sure what Joey did would not work for everyone with ME’. This sounds to me that you do believe this will work for everyone, with the second sentence contradicting the first. It seems a matter of semantics and in truth as it has worked so well for Joey, you and others in your heart you are pretty sure it will.
I think I am more open to trying it if the stance is we don’t know for sure this will help everyone but it is certainly an approach worth considering as it may help. Could there not be subsets? And the mold/chemical reactivity people are a subset? As Cort says studies are merited as some people have such a fantastic response
Thanks Joey for the clarification. Do you suspect that all people with ME would benefit from mold and chemical avoidance or do you feel until studies are done and tools like healclick it is impossible to answer that question at this stage? Many thanks
Hi Annie,
I think for us to know how many patients would benefit from avoidance, we’d had to know what subset we’re talking about. Until this illness is well-defined, how could we possibly know? Recently I talked with another patient that identify with “CFS”, that have POTS, and clearly have some similar physiological issues as I, that got no benefit from doing this type of experiment. But the more I learned about this patient, the more I start to realize how different we were.
So patient-sharing via HealClick (for example) might influence influphysicians/researchers to look more into this, and it might influence more patients to try it, but only researchers can answer this question in any kind of definitive way.
Joey
Is there no way for us to edit comments? Cort you’re killing me on “head cold” day 🙂
You should be able to edit comments after you make them. You’re not able to do that?
I think it’s great that Joey has been able to see significant improvement, and appreciate the building of Heal Click to try to help our patient community. I just signed up for Heal Click. Interesting, the more I built my profile, my “high matches” went to “good” to “ok” to “low”. A concern that I have is that anyone can join the database. Versus, let’s say, this was a secure web site owned by a research team – where only verifiable patients can join. There is always the chance of trolls. That aside, I think it’s a novel idea. Thank you.
You’re catching me at a very low point, where when going to bed at night I wish for a sudden MI or brain aneurysm. I want this to end. The time of year is not helping either, living in the Northeast. So, I appreciate your honesty, Joey, about “practical reasons” – which I completely relate to. That being said, I am glad you are still with us <3
I have always had some concerns about the "location effect" being the cure for our illness. I believe that location can affect us, particularly those of us with MCS. However, there are millions of people living in very sick environments who are doing just fine: going to work, working out, socializing, etc. I've always been saddened by this approach, because for the severely afflicted traveling is barely an option….even the expense of it. (My doctor wants me to move to Sedona, btw). Also, I worry that the "location cure" will deflect attention needed for research/treatment on a more "molecular" level. People in England, let's say, cannot readily move to a desert. Thank you for letting me air my thoughts on this.
Hi Nico,
Thanks for your honesty. Our matching algorithm definitely needs to improve, but it will take a little time (and funding). If you or anyone else would like to see these matches become the real deal, as opposed to sort of the novelty they are at the moment, please help us share our indiegogo campaign: http://igg.me/at/healclick
I’m confident we could get these matches solid within 2 months, once we have the funding. It would be something to see these match levels actually start to tell a medical picture, and maybe even start telling stories that aren’t obvious to us already. That’s the whole point, anyway!
You are probably right that I’m in the moderate category due to the fact that I could walk for 10 minutes. And more than anything, that tells you just how severe this condition is.
For the record, I have never stated that the locations effect is a cure for our illness. All I have is my experience, and the same goes for the patients sharing our 1500+ treatment reviews since launch. I, like many, was skeptical about this whole protocol for years and had to serendipitously experience it myself. I often wonder if I would’ve saved myself years and thousands of dollars if I had been more focused on the actual experiences shared, rather than the implications of them being true for the disease as a whole.
P.S. Adding powerful spam protection and comparing emails against databases of known trolls is another reason we will need funding to make this data usable for real research.
Unfortunately having doctor- or researcher-verified patients is just not realistic for us, barring serious funding (beyond our indiegogo campaign goal) given that we are a team of 3 cofounders and our community leaders / managers are patients themselves.
I imagine you would have saved a ton of money. Which is another reason for this approach to be more mainstream.
Why not a small community where people can rent safe rooms for a month or so and see how they do? That would be fascinating.
I started to work on a tiny-home community when I was in the CA desert. Unfortunately land use laws make it ridiculously hard to pull this off this without major unnecessary expenses of some sort (whether it be building an RV park, single-family home, or….using half of our acreage for a farm.)
Bureaucrats.
Cort, I think it would be a fascinating idea….agree. But, what comes up for me (not dissing it, I’d be the one to say “sign me up”) is different levels of MCS, EMF sensitivities, etc. However, some avoidance may be better than none at all. I think anything “communal” might be difficult. People might be seeking/expecting perfection, and by living near others, may not find enough relief = frustrations(???).
Joey, I wasn’t implying that you were telling us to do the locations effect. No worries. 🙂 I think it’s also very cool that you tried to do work toward a desert community. There is so much to consider!
As far as the web site goes, bravo, again. I just wanted to air a few of my thoughts. No criticism intended 🙂
I’ve seen many people with pretty severe ME pursue what I would call “moderate” avoidance and get substantial benefits.
For instance, one patient of Dr. Peterson who had tried a variety of heavy-duty drugs moved from an obviously moldy home to a better one, discarded all belongings that could not be washed, and washed the rest. This person reported substantial improvements very quickly and continued incremental improvements as more time went by.
One thing Joey does not mention is that he did not go straight to the desert in a trailer either. He spent an interim step without any of his previous possessions in a house in Las Vegas, where he experienced enough improvements to make living there worthwhile for him. That house was by no means pristine, but I think possibly it allowed him to recover enough strength to make further avoidance more doable.
I spent a year living in other apartments/homes myself after moving out of my moldy house before pursuing extreme avoidance too. And I improved a lot as a result, during that time.
So I don’t think this should be perceived as an all-or-nothing endeavor. Moving toward improvement by reducing rather than eliminating exposures can be worthwhile.
The one thing to note is that some of these toxins are so bad for people with this illness that contaminated possessions or living in a particularly bad location is enough to keep them permanently sick, regardless of how good the house is.
>The one thing to note is that some of these toxins are so bad for people with this illness that contaminated possessions or living in a particularly bad location is enough to keep them permanently sick, regardless of how good the house is.
This format does not allow editing, but this paragraph actually should read:
“these toxins are so bad for many (or possibly all) people with this illness….”
OK, you guys will think Im crazy, but I would love someone to question my recovery from CFIDS due to a 2 week coma, from a brain aneurism. I return from a Klimas apt in April for blood work. Looking forward. The ‘regular’ doc at hospital told me this has happened to another CFS patient he had. I remember Dr. Cheney telling me he would like to do comas, cant remember why, it was 13 years ago. lol
Recent research suggests that the primary function of sleep is to detoxify the brain. So I wonder if a coma might allow the body to go into an even deeper repair mode and thus detoxify the brain to a particularly large extent.
My experience is that in a good environment, I sleep extremely soundly. Not quite a coma, but close. And I think that is a good part of why I feel so much better in good environments.
Agree with Nico, But so happy for Joey though he has his life back, I am in the Uk so no chance living in a Desert, The dust in the desert would really go for me big time so I will pass on that idea, Best Regards ALL <3
I can relate to wanting the big sleep. The one you don’t wake up from. I just don’t have enough ambition to figure out how to do it. And I’m so averse to more pain, and also causing my family pain, I’d have to be sure it would be quick and painless, which, no matter how I did it, wouldn’t be the case for loved ones. So, here I lie.
I’ve joined healclick, and I’m in active exchanges with people who’ve tried things that worked for similar symptoms. I’m very grateful to Joey for sharing his story and especially offering us this site to search for practical solutions to similar symptoms. I think it’s brilliant!
Thanks, Cort, for letting us know about healclick and Joey. We can all use a little help from our friends.
I’m lying here wistful that I could try a metal container in the desert. I live in north Florida, and mold here is ubiquitous. Wonder if we could put together a little “container court” like the old motor courts, so that people like me could try that out as a cure…. Anybody with deep pockets game??? I’d pay as handsomely to try it out, and I bet many others would as well.
I wonder what making something like this a reality would involve?
If something like complete separation from all your belongings (and the toxins you’ve developed a sensitivity to) in a mold free environment has the potential to allow critical functions to come back into balance then it would be wonderful for people to have some way of trialing it. Perhaps healclick will allow something like this to come about!
A quick question for Joey: Did you notice any obvious detoxing?
…Presumably whatever was able to work right in the desert made easy work of eliminating stored toxins….
That’s a great question, Anne. I’d like to know the answer too.
I did take cholestyramine (the one without preservatives) pretty religiously for the first year.
As I mentioned to someone on HealClick, if 100 people talk about avoidance on facebook or forums, will it ever move the needle? As Cort and Lisa highlighted above, the 1st problem is sample size. If people are doing this and other unconventional treatments, we need to be able to track #’s, effectiveness ratings, correlate these with symptoms and labs. This is really feasible for us to do with HealClick once everything is set up.
So if we want these experiences to turn into something bigger than a few anecdotes, I think we have the power to do that.
Joey, I’m trying to figure out how cholestyramine helped with detox…. But perhaps I’m thinking of Herxheimer responses, causing leg cramps, etc.
I continue to respect the way Joey has handled success and pursued his mission; humble, no finger-pointing. Meanwhile, as Cort duly said, others have improved by other means, perhaps because other factors were predominant for them. Great article and thread.
How you guys stand the Vegas heat, I don’t know. But with a little more $, I’d love to try a desert vacation, though I’m not sure I’d require the metal trailer to see improvement.
Mold aside (think Mike in Newport Beach), SoCal’s supposed to be a benign climate for ME/CFS. I lived there when I got sick, but also improved there. The only real locality change there was retiring from the military base.
But Cali being what it i$$$ (except in the desert), I moved to the mid-Atlantic, thinking I might adapt because I’d grown up in the Northeast. Well, no dice. I moved into a second-floor apartment, which even locals swelter in. The hallway in August felt like a dank jungle; there were smokers around me. I’d been 135-140lb in CA, post-onset; I went down to 125lb in that hellhole. Somewhere there was a tick bite, but it got treated, and I still think my space figured in huge. I switched buildings and floors, and saved myself with Ensure+ and mild weights.
(P.S. for lean folks: Juven drink powder, used widely in the HIV realm, was recommended by my M.D.’s nutritionist. I finally found it in the supermarket this month, and it appears Abbott Labs took out the aspartame.)
I’ve no one left in SoCal, and I know how hot the desert gets by April/May (perhaps sooner this year). So while thinking it over, I moved closer to D.C. of all things. Even while not up to SoCal energy levels, I’m a different animal come spring and fall. Winter’s still not bad when it’s cold and dry, vice rainy. I definitely have better days when I can air out the apt. without spiking the humidity; ‘might be the mycos, nicotine, and/or formaldehyde that accumulated. In summer, though, I found that I can be perfectly comfy inside with the A/C, but 10 mild push-ups feel downright dangerous if it’s 100% humidity outdoors. The Northeast has fewer severe days, but in a heat wave it’s not much better until you get to Maine.
I just put together a short video update on Why I don’t regret “coming out” as a patient, and why sharing treatment experiences on HealClick is so important to move research forward. http://vimeo.com/85303197
I don’t know whether it is because I am on an ipad but under Joey’s story there is a big blank section until more text appears ‘ it turned out that there was a significant ….’ Should there be something there in the blank? A video perhaps? Thanks
The video isn’t showing up on ipad.
Here’s the direct link: http://youtu.be/np_mtlwdat8
Joey/Cort, I think new cottages are about to go live 30 miles from William Rea’s center. Or maybe they already have. 30 miles might be too close to Dallas for some people, but these cottages are not exclusively for Rea’s patients (though many will be there). Apparently they have been built for EI’s. I think there is also an area where camping is allowed. I don’t know exactly where they are, but I’m sure people could find out if they contact Rea’s office. I assume the rent will be very high–but flexible leases–and for those with money, it might be worth a try. I’m pretty sure the interior air will be very well filtered, and it’s unlikely they used any typically toxic materials. I’m not sure I would call this “healthy” living in the sense of stripping down exposures of all kinds, and being outdoors a lot, BUT it’s potentially an option and I’d be curious to get any feedback about them if anybody does go.
Also, they may have detox methods available at the cottages (Far infrared sauna). I’m not sure.
Hi,
I’ve noticed I feel a lot better on days where the humidity is low. For me, I don’t think it’s the mould causing a difference, ‘cos I feel better even though I wake up in the same bed. I can tell even before looking out the window if it’s a fine dry day or not. Places with high humidity don’t suit me, but I live in one and can’t leave because I don’t have the strength and don’t know where to go or get the help to move. Does anyone else feel better when the air is dry?
Yes, it’s very common for people who are mold-sensitive or who have ME/CFS to feel worse during times when the barometric pressure is dropping (i.e. when it is going to rain).
Many people doing avoidance have noted that this “weather effect” does not happen when they are in a really good location, such as a pristine desert or woods. That suggests that this effect may be more something that is going on in the environment during times of barometric pressure drops, rather than something internal to the body.
One possibility is that a certain type of particularly toxic mold present in outdoor locations (such as growing in sewers) may release its spores into the air during times of barometric pressure drops, in anticipation that the rain that follows will help it to establish itself as a new colony.
This is another topic desperately in need of study!
Lisa and/or Joey,
Is it possible that even if one’s home has a good ERMI score and there is no “visible” mold (yet there is clear indication of water damage) that mold may still be an issue and that they may still benefit from avoidance?
Also, in terms of leaving old possessions behind before moving: Clothing can obviously be washed but should it be washed at a third party location and not in the current residence? What about books and electronics?
Thomas
Cort, I’ve tried to keep up with info you have been sharing for years…great job! If I’m not mistaken at one time you were living/sleeping in your car in the desert? If so was it for health reasons or just hiding out:)
That was because of multiple chemical sensitivity. It’s still an issue and I still sleep outside but I’m doing much better with it.
That’s good to hear…also I’m a little proud of myself for remembering! Sometimes I get info overload and tune out a bit. I may be wrong but avoidance seems to be a big topic now… yet this is something you’ve been doing for years. Again Cort… you’re doing Great Work!