slayadragon
Senior Member
- Messages
- 1,122
- Location
- twitpic.com/photos/SlayaDragon
Hi Shell,
Unfortunately, I don't have any answers to how people can address the problems that stem from toxic mold exposures, insofar as they remain in those exposures.
For those people who cannot currently escape sufficiently from those exposures, I cannot possibly give any better advice than respected physicians such as Dr. Peterson and Dr. Cheney.
It's my belief that the bulk of these doctors' very ill patients are living with severe toxic mold exposures, and that over the past 25 years they have done the very best that anyone could in order to address those individuals' issues.
Insofar as people have the ability to change their environments for the better, I have a few additional ideas. Please let me know.
Following are some conversations that I've had within the past two weeks on the Yasko board with two recovered CFSers. I actually had no idea that a toxic mold problem had kicked off their illnesses or that they'd made special efforts to stay away from it as they recovered.
There's also a little sidebar that I wrote for another board.
Whether this will prove to be a theme in the other recoveries that I see, it will be interesting to find out.
Best, Lisa
*
Just checking in after a couple years' absence. I've been off getting my Lyme treated. (And yes, it was Rich who figured out that Lyme might be my issue.)
Good to be back -- I see there are some new wrinkles and understandings that I'm wayyyy behind on. Will need to catch up.
I have a known mold allergy that was diagnosed 15 years ago. Earlier this summer, I vacationed for a few days in Maryland and Virginia's eastern shore -- within just a few miles of Rich Shoemaker's office, as it turned out, but I didn't know that until later.
What I did know is that I came home from that trip sick as a dog. We stayed in several older buildings that I knew were moldy -- could smell it as soon as the door opened, and felt it like a hammer to the head the next morning. I also woke up with the telltale puffiness and numbness in my face and hands. It took over a week for my system to clear it -- and that's with my newly pretty healthy body. I know it would have taken a lot longer (or maybe never) before methylation correction and Lyme treatment.
At any event, it reminded me all over again just how evil and pernicious black mold can be. I agree with the advice to get him moved ASAP, if at all possible. If it's not possible, get the house tested, so you have documentation to present to the landlord when you demand that it be fixed.
In an older building, fixing it can involve stripping out the sheet rock and insulation, and maybe even replacing some of the framing. It's not a cheap or easy fix, and it wouldn't be surprising if the landlord put up a heck of a fight. Non-wood buildings, if available, are generally better (I started to be fine when we got back into DC and checked into an all-brick hotel) -- but in the west and southwest, there may be no other choice.
I really am incredibly better now: durable, able to handle stress, and I very rarely lose days any more. The biggest issue now is deconditioning, which I'm working on with a good PT who combines table work with Pilates. Since I was 26 when I got sick and am twice that age now, it's not reasonable to use the energy levels I had before as the benchmark for now. But it's easy to imagine that I'm pretty much as healthy now as I would have been at 52 if I'd never gone through all this, and just let myself go a little instead.
The mold is a cleanup issue -- a minor nuisance, like the candida, that I'll probably be managing off and on forever. Lyme did leave behind some joint damage and arthritis (again, I may have had this by now regardless) that will require surgical repair and/or pain management in the years ahead; so it goes.
Other than those few things, the illness doesn't really define my life much any more. I don't have a caregiver; I haven't used my scooter in over a year. My handicapped plate expires in November; I won't be renewing it.
As long as I'm careful to eat a clean diet and get all the sleep I need, the rest seems to pretty much take care of itself.
The little career that started with taking a few grad school courses as Yasko began to work its magic has done well, too. My MS is moments from done; the client for my current project is the largest caucus in Congress. When that's done, it will be on to my first book.
And it's good to be able to say out loud that you had everything to do with that, starting way back in 2005 when I was one of the original 60.
-Sara Robinson
**
Following is an exchange that I had with another recovered CFSer (on the board devoted to Rich van K's and Amy Yasko's protocols). So far, all the recovery stories I have found of people who were sick with Canadian Criteria CFS for more than two years have included the following elements:
1. Extended period of less than full wellness with vague CFS-like symptoms (sometimes since childhood or for years).
2. Substantial toxic mold exposure associated with decline into severe CFS.
3. Get out of the toxic mold exposure.
4. Get into a healthy environment (very good in terms of toxic mold, at least pretty good in terms of chemicals).
5. Detoxification.
6. Toxic mold reactivity decreases and general resilience improvements allows pursuit of more normal life (staying fairly carefully within boundaries in terms of all kinds of "ick")
The ways in which people pursue detox vary from person to person. Most of us have treated various pathogens (Lyme/viruses) along the way as well, and done various other treatments.
People fall into two categories with regard to their mold-contaminated stuff. Some (Erik, Jonathan, Mike, me) got rid of all their stuff immediately upon moving and started getting health gains within months. Others (Stormy, Laurie) kept their stuff and didn't get any substantial gains for 5+ years after being in the new place. It will be interesting to see if this pattern continues.
I'd like to talk to as many recovered CFSers (they're quite unusual) as possible, in order to make this into a legitimate research project.
If anyone has any leads of other people who might be good to discuss this with, please let me know!
Best, Lisa
*
Hi Lisa,
You may want to google mercury and PCB toxicity in the Inuits. I read an article on this several years ago. The breast milk of Inuit women have the highest levels of these two toxins of any human population in the world. The toxins are swept into the pristine environment of the northern oceans by the ocean currents. The lower temperatures prevent the toxins from being sequestered or broken down by microbes. The toxins then bioaccumulate along the food chain and concentrate in the blubber of sea mammals, which of course, are a mainstay of the Inuit diet.
I agree with Rich, that our genetics make us susceptible to glutathione depletion and the world we live in provides ample opportunity for us to run into a multitude of toxins, infectious agents, or biological stresses that may send us into a downward spiral.
You may be familiar with the book, The Canary and Chronic Fatigue in which Dr. Ali makes the comparison of people with CFS demonstrating the ill effects of the world we live in, much the way canaries are used in mines to detect a toxic environment. It's been a very long time since I read his book, so I won't go into his whole theory. But I have always thought that he was on target with this analogy.
I believe the world we live in has become really unhealthy. And that is why the rates of Autism, CFS/ME, and some of these other chronic health conditions are on the rise. The difficult reality may be that we live the harsh consequences of evolution in action. Our genes are just not the "fittest."
Anyway, I think there are a million toxins, infectious agents, and situations that we encounter that take a toll on our bodies. In short that it isn't one thing... no smoking gun. But that by living as clean as we possibly can and supporting our systems to manage what comes our way that we can recover a decent, even good existence. At least that seems to be what is working for me. Albeit no easy or quick task!
I remain forever grateful to Rich for uncovering a viable way to boost glutathione levels.
Best,
Laurie
*
Hi Laurie,
Obviously there are lots of very bad toxins out there, and I certainly think they all are having an effect on us.
The world we live in is a very scary place. After spending 18 months pretty much in the Godforsaken wilderness and small towns, I braved the outskirts of Denver. I started feeling sick immediately and thought to myself, "What the **** have we done to this planet? How can people live in conditions that are so far from what we've evolved to deal with and possibly be alive?"
It was a "Planet of the Apes" moment. Like it wasn't just the biotoxins that were the problem, it was civilization as a whole.
I also agree with Rich that there are all kinds of things that can have enough of an impact on us to deplete glutathione reserves and cause us to fall into poor health. I suffered from all the ones he mentioned and more during the two years prior to getting sick: a series of three Hepatitis B shots (mercury and immune activation), severe emotional stress as a result of the conversion of my "soft" bipolar into a rapid cycling nightmare from poorly prescribed drugs, an intense and intellectually stressful Ph.D. program, a head injury, a pregnancy/miscarriage, and a "killer flu."
The problem that I have is that people use this "everything and anything" concept to think that they can make progress using Rich's protocol (and, if that doesn't work, tens of thousands of dollars worth of additional supplements from the Yasko site) without moving out of their moldy residences.
From what I've seen, I don't think it works like that.
When I visit CFS patients in their homes (and I've done that a lot), their debilitation corresponds just about perfectly to the amount of mold contamination I find there.
The ones who are sick are in places where I would be just as sick, no matter what treatments they're doing.
Whenever I encounter CFSers who have recovered (not too many), they attribute their recoveries to various things that they've done. Usually there's some detox involved, and often some sort of pathogen treatment.
I don't doubt that those things had a good effect for them. I'm wholly convinced that Rich's protocol (as well as Valcyte/Famvir) has been hugely helpful to me, for instance.
And I even think that maybe if I'd taken Rich's supplements to begin with I'd have stayed well. Mold or no mold. XMRV or no XMRV.
(Maybe.)
But so far, all the folks I've found who have recovered from long term moderate or severe CFS also have been living in homes that are really excellent in terms of being free of any significant amounts of mold contamination.
Moreover, so far, all these people have KNOWN that their homes were good in terms of mold contamination....and that they get sick right away if they get around too much mold.
So they avoid it.
They just don't ever bring that part up to anybody, unless I do it first.
It doesn't seem important. It seems obvious. It seems coincidental.
But it's part of a pattern.
It's a foundation for doing other things.
I want to find out what those other things are. That's why I asked to talk with you about your recovery. I want to add that to the other case studies that I have of people who have gotten really well, to see if we can make some sense out of how to get out of this mess by looking at commonalities and divergences. I don't think that anybody can do one thing that turns out to be a "cure" for this disease: from what I've seen so far, it seems to require a balancing of a number of factors.
However, I do think that if people live in an environment that is toxic (and especially if it's toxic with a substance that exerts its toxicity through inflammation, oxidative stress and immune destruction), taking a few supplements isn't going to do anything for them at all.
Not if the problem that's being addressed is CFS, anyway.
Maybe I'm wrong. Maybe you'll tell me that your own house is a mold pit and that you're doing wonderfully well in it anyway.
In which case, I'll stop all of my CFS/mold education efforts and go devote my life to a job that will make me some money.
Thanks much for your note.
Best, Lisa
*
Hi Lisa,
I couldn't agree more! Probably impossible to reestablish healthy glutatione levels while living in a moldy residence, or eating processed food, or having chronic exposure to anything that will continue to tax the detox system. In short, one has to bring the total body burden of toxins, stress, and activity below a certain threshold so that the body can use its energy (what little it has) for the sole purpose of healing. I also believe that I would not have recovered without extensive diet modification. And, while I veer a little off dietary course with a little dairy or wheat, without strict attention to my diet I am at risk of relapsing.
You may remember that I lived in a house with a horrible mold problem. My health degraded greatly during this time. I was not yet diagnosed with CFS/FM. I had been plagued with symptoms since childhood and I was just beginning to investigate what might be the underlying issue. Hard for me to pinpoint how much of my decline was due to mold. I'm sure it was significant, however I was also under a lot of stress and I had a long history of fatigue. We did move, however we did not replace our belongings. I remember getting a really bad cold and my husband having a major asthma flare after moving and I just knew that it was induced by the extreme mold exposure that the move brought on. That was about 8 years ago.
It's been 6 years since I was finally diagnosed and began my intensive healing journey and 3 years since I began Rich's simplified program, of which I was religious with for 6 months and then began Yaskos full protocol for another 6 months and then quit everything. So for two years I've done very minimal supplementation and have had no major flares. I believe my methylation cycle to be fully functional again. I don't believe that I have eliminated all of the heavy metals that had accumulated. I quit the full protocol because I was experiencing an increase in inflammation. I had intended to go back to a more basic supplementation program including Rich's 5. I just never really got around to it. Plus the full protocol had really depleted the last of our financial reserves.
This spring we moved again. Guess what I found in the process? Yes, mold! I should have known. It was in my husband and my bedroom. He had been sleeping on the couch for several months. Every time he came to bed his nasal passages would congest and he wouldn't be able to sleep. But I didn't get sick. Even in the moving process I didn't get sick (and I did the bulk of the moving). I think it is a testament to the possibility of recovery for all of us. I also know that the type of mold makes a difference in how it effects us as well. So maybe the second mold bloom was a less toxic type.
I could go on forever, which is why I rarely post. I just can't narrow down my thoughts, beliefs, or experiences to be what I consider meaningful into one post!
I applaud your commitment to your health and recovery!
Best,
Laurie
