Biotoxin/Mold Illness

[slayadragon]

But on the other hand.....

Sometimes I am asked why I am putting so much emphasis on biotoxins, when there are so many other bad toxins out there.

The reason is that there is a SPECIFICITY associated with what I am calling the "?". It isn't just something that makes everybody feel like crap, and people with ME/CFS even more so. It's something that is so closely associated with the severe form of this illness -- the kind reported in the Tahoe epidemic described in Osler's Web -- that anyone who looked at it would be hard-pressed not to call it a cause. (Not THE cause, but certainly A cause.)

If you've got classic ME/CFS and you're exposed to a lot of this stuff, you're going to be in agony. If you're not exposed to any of it at all, you may not be well immediately, but life quickly will become at least tolerable.

I am staking everything on this assertion. If I'm not right, then I'm delusional and will quietly bow out of this whole thing.

Here's an excerpt of a letter I got yesterday from someone who was living in Lake Tahoe while really sick and has experienced a remarkable recovery of most of his health after moving to Texas (of all places, Jen) and pursuing a variety of the sorts of ME/CFS treatments that have been discussed at length on this board:

>I used to feel like I was dying all the time. It was torture. I cried for hours nearly every day, and I couldn't imagine anything more torturous. I was afraid to be alone as I was sure death was knocking on the door at any second.

>As controversial as chronic tick-borne disease (such as chronic Lyme) is, my symptoms started with a tick bite. I don't know if living in Lake Tahoe makes you more likely to get XMRV. I wasn't alive during the Incline Village outbreak, but I have visited Lake Tahoe all my life and our family even had a cabin there.

People with this disease simply cannot live in some of these places and have any quality of life at all. Following is an excerpt of a description from the symptom scale from the Hummingbirds' Foundation for ME, a group that focuses on severe ME/CFS:

>Extremely severe symptoms = 10. Totally non-functional and also possibly crying out or moaning uncontrollably and/or being near delirium. Completely overwhelmed with pain and suffering. The face muscles may be slack, the body partly or completely paralysed, and thinking or communicating may be impossible. As far as the patient is concerned, being eaten alive by a tiger could not hurt any more, or feel any worse. Absolute agony.

They describe it this way because some people with ME/CFS actually DO have symptom severity at this level. There is no limit to how horrible this disease can be. And, to my knowledge, there is no other disease where the bottom is that bad....certainly not for the years or decades that this thing drags on.

I feel very strongly that this would be where I would be if I were forced to move to certain locations in (for instance) Ann Arbor or Lake Tahoe. It only is by the grace of God that I wasn't living there when I got sick.

Finding a cure for XMRV -- if indeed it is the "cause" -- is a noble goal.

But in the meantime, we need to get people out of the places that are torturing them.

Best, Lisa

 

[maryb]

Lisa I have a major problem here, my hubby is keepinghis coats under the stairs in a cupboard that has had mould in it, long story but I stored a lot of old curtains in there from various houses until realising they were making a dry cupboard moudy. I threw them all out but he is hanging his winter coats in now, I thought it was just his walking jackets and as he is soon outside in those I haven't said much, but today we went out to the s/market, after a couple of minutes I felt really ill and had to go back to the car, racking my brains as to why I should sudenly feel so ill I asked him if his coat had been hanging under the stairs, Yes it had, I'm convinced that was the reason I felt so ill. What can we do with these coats, would hanging them outside in the -6o weather have any effect on the mould. They are very expensive coats, but I just don;t know what to do, he is an absolute brick and looks after me so well but doesn't really understand the illness. My house isn't too bad as far as being dry, utility room, where the washer etc is, I get a reaction if I stay in there too long, but elsewhere is manageable with for the time being. I would be grateful for any suggestions.

 

[slayadragon]

Lisa I have a major problem here, my hubby is keepinghis coats under the stairs in a cupboard that has had mould in it, long story but I stored a lot of old curtains in there from various houses until realising they were making a dry cupboard moudy. I threw them all out but he is hanging his winter coats in now, I thought it was just his walking jackets and as he is soon outside in those I haven't said much, but today we went out to the s/market, after a couple of minutes I felt really ill and had to go back to the car, racking my brains as to why I should sudenly feel so ill I asked him if his coat had been hanging under the stairs, Yes it had, I'm convinced that was the reason I felt so ill. What can we do with these coats, would hanging them outside in the -6o weather have any effect on the mould. They are very expensive coats, but I just don;t know what to do, he is an absolute brick and looks after me so well but doesn't really understand the illness. My house isn't too bad as far as being dry, utility room, where the washer etc is, I get a reaction if I stay in there too long, but elsewhere is manageable with for the time being. I would be grateful for any suggestions.

The problem that ME/CFS patients have with mold is not the mold itself, but the toxins made by the mold. (Some patients also have mold allergies, but that's a minor problem in the scheme of things and not specifically related to ME/CFS.)

Thus, the idea of killing any mold that might be growing on the coats is irrelevant.

I have been told that the toxins made by the mold are stable up to 500 degrees F. I am not under the impression that they can be destroyed by freezing.

Hanging contaminated items in the sun may have a little benefit, provided that the contamination is minimal.

Washing the items with water (not dry cleaning) may have a little benefit.

Bringing the items to a high altitude (e.g. 8000 feet) may help a bit.

Storing the items loosely wrapped (or unwrapped) in a clean dry place (where mold won't grow) for 5+ years may help a lot or even make the items wholly tolerable again.

I'm sorry I can't be of more help.

Best, Lisa

(P.S. Note here the idea that contaminated items take about 5+ years to die down. Any time you see any sort of ME/CFS recovery by any means -- herbs, detox, antiretrovirals, neural therapy, whatever -- count the number of years since they moved from the place where they got sick, or since they moved to their current place. The correlation with people getting better at the 5-7 year mark is remarkable. The only cases I've seen with people getting well faster are when they do as Mike Dessin did -- get rid of every single possession and start over.)

 

[maryb]

Thanks for your reply Lisa, I'm going to try hanging them on the line just to get them out of the house, he wants to now clear out the cupboard, not a good idea in the freezing weather, god I'm sick of this illness. thanks again anyhow.

 

[slayadragon]

If there's mold in the cupboard, you'd be best off keeping it sealed for the time being (unless you can get a professional remediator). Otherwise, the mold will be spread into the rest of your residence, making you even more sick.

There aren't very many professional remediators in England, but I can look up the name of one if you want it.

Best, Lisa

 

[mojoey]

I still find it very interesting that in Cheney's NIH poster, he tested for XMRV positivity in overlapping conditions (MCS & CFS, mold illness & CFS, chronic lyme & cfs, food sensitivities & cfs, etc), and found that the highest degree of positivity was in the mold illness/CFS (9/10 patients with both were XMRV+) & chronic lyme/CFS (11/12 patients with both were XMRV+). And it wasn't really close. MCS for the record was about half and half.

It does beg the question of how he diagnosed for MCS, but I would venture to guess that most patients that make it to Cheney's office would know if they had MCS and it's largely a self-diagnosis. As we discussed earlier, the noticeable response to chemicals tends to be much more readily picked out than to biotoxins.

That would beg the question of how he diagnoses mold illness: the fact that he was already able to pick out as many "mold illness" cases as he was using either self-diagnosis, expensive mold testing (many patients can't afford it, and even if they could there are lots of false negs), or extremely high C4a's (20k+, which certainly could point to mold illness but also could be false neg because the numbers jump around so much), and found such a high XMRV positivity rate in these cases, says a lot. It also says there are likely way more mold cases to be identified in his office.

I hope he expands this study (sample size of 47 is really small), because comorbidity rates among XMRV+ patients would go a long way toward figuring out the relationship between XMRV, mold, MCS, lyme, and more. If his original results bear out, certainly it would argue that there is a much stronger connection between lyme and mold with XMRV.

 

[floydguy]

I still find it very interesting that in Cheney's NIH poster, he tested for XMRV positivity in overlapping conditions (MCS & CFS, mold illness & CFS, chronic lyme & cfs, food sensitivities & cfs, etc), and found that the highest degree of positivity was in the mold illness/CFS (9/10 patients with both were XMRV+) & chronic lyme/CFS (11/12 patients with both were XMRV+). And it wasn't really close. MCS for the record was about half and half.

It does beg the question of how he diagnosed for MCS, but I would venture to guess that most patients that make it to Cheney's office would know if they had MCS and it's largely a self-diagnosis. As we discussed earlier, the noticeable response to chemicals tends to be much more readily picked out than to biotoxins.

That would beg the question of how he diagnoses mold illness: the fact that he was already able to pick out as many "mold illness" cases as he was using either self-diagnosis, expensive mold testing, or extremely high C4a's (20k+), and found such a high XMRV positivity rate in these cases, says a lot. It also says there are likely way more mold cases to be identified in his office.

I hope he expands this study (sample size of 47 is really small), because comorbidity rates among XMRV+ patients would go a long way toward figuring out the relationship between XMRV, mold, MCS, lyme, and more. If his original results bear out, certainly it would argue that there is a much stronger connection between lyme and mold with XMRV.

In NJ Dr. Mikovits told me that there is a very high correlation to high TGF Beta1 and XMRV detection. High TGF Beta1 is of course typical in those with mold exposure.

 

[maryb]

Lisa I would be grateful for any help with finding someone who could help - I am in the north of the country near Manchester. I have been tested for mold by KdM, get my results next week for this, but already know I have a problem.

 

[slayadragon]

Mary,

This is the only company I've encountered. I don't know anything about him except that I encountered him on a group and he seemed competent.

Jeff Charlton
www.999team.org
London

Best, Lisa

 

[maryb]

Thanks Lisa its given me the idea anyway, don't think we are as advanced as the USA in understanding the importance of toxic mold on health.

 

[Mark]

I still find it very interesting that in Cheney's NIH poster, he tested for XMRV positivity in overlapping conditions (MCS & CFS, mold illness & CFS, chronic lyme & cfs, food sensitivities & cfs, etc), and found that the highest degree of positivity was in the mold illness/CFS (9/10 patients with both were XMRV+) & chronic lyme/CFS (11/12 patients with both were XMRV+). And it wasn't really close. MCS for the record was about half and half.

Wowzer! I didn't see that one coming! I would have been expecting the opposite, if anything...preparing myself for a future where everyone who turned out XMRV- had mold as a cause instead! I did think that the mold connection made perfect sense and I was hoping it would pan out roughly this way, for my own moldy selfish reasons, but I didn't dare dream for results like those.

What was this NIH poster you're talking about? I was waiting with bated breath for Cheney's comparison of overlapping conditions, but somehow I seem to have missed that! I was expecting it at the 1st International XMRV conference but don't remember seeing it there - maybe it got lost in all the deluge of info? So much relevant science has gone by so fast I know I've missed some key bits now...anyone know where I can find this, and anything else I may have missed at the same time?

 

[mojoey]

These numbers are from Cheney's poster presented at the 1st Int'l XMRV conf. Mindy was the first to report these results, but I can't find Mindy Kitei's recap of his poster anymore; I believe she took it down. I did message her to inform her that her interpretation was incorrect, and perhaps Cheney gave her the same message. So these stats are just what I recorded at the time. Here is my post regarding the statistics when they were first released: http://www.mecfsforums.com/index.php/topic,2076.msg22401.html#msg22401

To my knowledge, the actual poster is not accessible online.

 

[Mark]

These numbers are from Cheney's poster presented at the 1st Int'l XMRV conf. Mindy was the first to report these results, but I can't find Mindy Kitei's recap of his poster anymore; I believe she took it down. I did message her to inform her that her interpretation was incorrect, and perhaps Cheney gave her the same message. So these stats are just what I recorded at the time. Here is my post regarding the statistics when they were first released: http://www.mecfsforums.com/index.php/topic,2076.msg22401.html#msg22401

To my knowledge, the actual poster is not accessible online.

Thanks a lot for that mojoey. Cheney had said in advance of the conference that he had some extraordinary results to present, based on an analysis of samples from different countries and different subsets/conditions. I took that to imply that these results were effectively going to both confirm the reality of XMRV and also begin to explain exactly what conditions it's associated with. So I was looking and waiting for that information more than anything - but it didn't appear.

I must have missed the brief window when Mindy reported the results - but presumably for reasons associated with whatever the reason is that everything has to happen behind closed doors, they were taken down - presumably whatever the reason is, that's also why only the people at the conference are allowed to know all this stuff.

And yes, I do realise that this is all perfectly normal and natural in the world of science, and that the typical reasons are factors like the way the publication process works ($ and publicity), and for political reasons ($ and people who want to trash the whole thing), and for IP reasons ($), and maybe for management of the population's fears and reactions (the need to treat us all like children), but I just can't help making the point once again that whatever the reason is that we're not able to be informed, the whole secrecy business stinks as far as I'm concerned.

Not that that's necessarily the fault of those who do know, quite likely it's quite the reverse, but even so, I just can't bring myself to feel comfortable with it....hence I keep ranting about it...sorry folks...

 

[slayadragon]

Wowzer! I didn't see that one coming! I would have been expecting the opposite, if anything...preparing myself for a future where everyone who turned out XMRV- had mold as a cause instead! I did think that the mold connection made perfect sense and I was hoping it would pan out roughly this way, for my own moldy selfish reasons, but I didn't dare dream for results like those.

What was this NIH poster you're talking about? I was waiting with bated breath for Cheney's comparison of overlapping conditions, but somehow I seem to have missed that! I was expecting it at the 1st International XMRV conference but don't remember seeing it there - maybe it got lost in all the deluge of info? So much relevant science has gone by so fast I know I've missed some key bits now...anyone know where I can find this, and anything else I may have missed at the same time?

This is just what I suggested would be the case in my first post on the "Control Points" thread (April 27, 2010): that mold causes inflammation and immune problems that cause the virus to activate.

http://forums.aboutmecfs.org/showth...l-Points-quot-Approach-to-Address-CFS-Viruses

It's also what Erik has been suggesting for the past 26 years (starting in 1984 when he walked into Paul Cheney's office as the very first case of the disease that later was named ME/CFS). Erik's history is described in the compilation of his writings, which I will send to anyone who wants it.

I bring this up not because I have some sort of personal satisfaction in being right.

I bring it up because I want to establish some sort of credibility for my statement that the severe form of this illness is being driven by a particular outdoor biotoxin that is present in (at least for us) horrific amounts in certain places, and that an extraordinary amount of pain and suffering would be eliminated if people in those places would just move to somewhere else that's known to be clean.

(And it would be better if they got rid of their contaminated stuff, but simply moving would be a good start.)

I keep getting letters from people in these same places, telling the same stories. Knowing that it doesn't have to be that way is heartbreaking.

How can we justify letting these people remain in agony if there's an option?

Best, Lisa

*

At the inception of CFS, Dr. Cheney told me that mold doesn't matter, because this kind of reactivity is just the result of something else.

So I said, "Fine. While you figure out what that something else is, I'm going to stay away from the mold."

There's no doubt in my mind that this was a good choice.

Who cares whether it is a result of P450 decoupling or anything else, if one can stay away from it and get a life back?

-Erik (2010)

 

[Mark]

This is just what I suggested would be the case in my first post on the "Control Points" thread (April 27, 2010): that mold causes inflammation and immune problems that cause the virus to activate.

http://forums.aboutmecfs.org/showth...l-Points-quot-Approach-to-Address-CFS-Viruses

It's also what Erik has been suggesting for the past 26 years (starting in 1984 when he walked into Paul Cheney's office as the very first case of the disease that later was named ME/CFS). Erik's history is described in the compilation of his writings, which I will send to anyone who wants it.

You absolutely did Lisa, as did Erik, and as you know I came onto the forum in the first place largely because I felt I had something significant to mention in terms of my own findings in relation to the significance of mold, and our experiences all seem highly consistent.

I just never thought that such a high proportion of us with mold-related illness would turn out to have XMRV as well. Lots of us, yes, but I didn't expect it to be nearly all of us. I thought maybe a toxic mold infection could do a whole lot to us without XMRV. But these results are implying that XMRV is the underlying reason why the mold is such a problem for us.

So just adding my vote to say: +1, Lisa's likely to be right on all points I reckon, and everything she's been saying chimes with everything I've observed and suspected myself. And of course she knows a whole lot more about it all than I do...

 

[slayadragon]

You absolutely did Lisa, as did Erik, and as you know I came onto the forum in the first place largely because I felt I had something significant to mention in terms of my own findings in relation to the significance of mold, and our experiences all seem highly consistent.

I just never thought that such a high proportion of us with mold-related illness would turn out to have XMRV as well. Lots of us, yes, but I didn't expect it to be nearly all of us. I thought maybe a toxic mold infection could do a whole lot to us without XMRV. But these results are implying that XMRV is the underlying reason why the mold is such a problem for us.

So just adding my vote to say: +1, Lisa's likely to be right on all points I reckon, and everything she's been saying chimes with everything I've observed and suspected myself. And of course she knows a whole lot more about it all than I do...

I think it's both: that the mold/biotoxins make XMRV and other pathogens more likely to activate, and that the pathogens (not just XMRV -- also other viruses, Lyme and candida) make the mold/biotoxins more damaging to us.

When I was first pursuing mold avoidance, I visited a variety of people's homes. This was when I was only partly unmasked, and thus was only bothered if a building was really bad.

All the homes of the non-ME/CFS patients felt fine to me. All the homes of ME/CFS patients felt problematic.....and if they had gotten sick in the home, they were invariably horrific.

At the beginning of the ME/CFS epidemic, Erik used to go to CFS support groups and always had to back away (or stand downwind or leave the room) from the other patients there because they were carrying around so much bad stuff on their clothes.

Finally I got so sick of being slammed that I made a vow to stop visiting any ME/CFS patients. Life is too short.

The exceptions are recovered ME/CFS patients. Their residences always are spectacular!

Best, Lisa

 

[Wayne]

Most people under the age of 30 have never seen the skies of "yesteryear" and thus have no idea how much they've changed. And for those who are older, it's been such a long time that they just don't remember.

I wouldn't have noticed either, if I'd not done all this driving around and realized what a strong correlation the look of the skies had with how I was feeling.

Hi Lisa,

I was wondering if you're aware of some of the things they noticed after 9/11 when there was no air traffic for three days. Here's a short blurb from Wikipedia:

September 11, 2001 climate impact study

The grounding of planes for three days in the United States after September 11, 2001 provided a rare opportunity for scientists to study the effects of contrails on climate forcing. Measurements showed that without contrails, the local diurnal temperature range (difference of day and night temperatures) was about 1 degree Celsius higher than immediately before;[6] however, it has also been suggested that this was due to unusually clear weather during the period.[7]

Lisa, the 1 degree Celsius (for the entire continental US) was apparently a HUGE difference my meteorologic standards. If you were interested, you could probably find a lot more information on what they learned after the skies cleared for three days.

Also, I've been meaning to ask you something. You did so many things for your health prior to doing your mold avoidance. Was there anything in particular that you feel may have been vital for you to have done before you did the mold avoidance?

Some of the things I've done for myself have been pretty dramatic, like methylation supplements, amalgam removal, metal crown removal, atlas profilax, etc. It's hard for me to imagine myself thinking about doing extreme mold avoidance without having done some of these initial steps.

In that same vein, have you ever considered creating a list of top priority items to do before, or possibly even during and/or after doing mold avoidance? I seem to remember you were compiling a lot of information, and have wondered if things along this line might be included in some of these compilations.

BTW, Northern Wisconsin has beautiful skies and clouds (last time I checked), and a very nice energy as well, which could be from the clear air.

Best, Wayne

ETA I might just mention that I've seen references to a possible connection between Morgellon's Disease and chemtrails; something about MD being an accumulation of polymers absorbed into the body from chemtrails. I have no idea whether whether there is any validity to this or not.

 

[slayadragon]

The reason that I've started referring to a certain kind of biotoxin (found outdoors in certain places) as "?" is to try to move the focus away from what it is and toward how to deal with it.

Anyone with ME/CFS (or likely related diseases such as Lyme) who gets clear and then spends time somewhere like Dallas is quickly going to realize that it's a very bad place to be.

As Erik said: "I don't care what this is. I just know it is happening."

My goal in bringing it up yesterday was to encourage people in these particularly horrible places to move elsewhere (and preferably to put aside the belongings that are contaminated with it).

From a logistical standpoint, it can be extremely difficult for ME/CFS patients to more anywhere.

However, some places are so much worse than others that it may be worthwhile to consider doing so anyway.

I have spent the past 2+ years traveling around to hundreds of different places.

http://twitter.com/SlayaDragon

http://twitpic.com/photos/SlayaDragon

During my travels, I have sporadically found the "?". It's mostly in cities, and it comes out to play mostly in winter.

It may be impossible for us to avoid ever being exposed to small amounts of the "?". After I started to know what to look for (it's quite subtle), I started finding dilute amounts of it in a wider variety of places.

However, while some of us (e.g. those with ME/CFS rather than Lyme/MCS) may be especially sensitive to it, small amounts are not going to bring us to the depths of screaming hell. It's "just" unpleasant and debilitating.

What I'm talking about here are the people who live in such agony that death seems a preferable alternative. As that ME Hummingbird scale says, "Being eaten alive by a tiger could not hurt any more or feel any worse."

When people get to this level of horror, anything would be preferable. Denying any sort of treatment is lacking in compassion.

I feel very strongly that these patients are, down to a person, living in places where the "?" is present at high levels.

Might it be that some sort of drug would allow them to live in those places and not be harmed by it as much? As we used to say in my childhood in the late 1960s (when the skies had real clouds in them), "If they can put a man on the moon......"

But until such drugs are available, if moving to a totally different place can allow them to reclaim some basic quality of life, it seems to me worth consideration.

In all my travels, I've encountered the following places with amounts of this stuff that are horrific enough that I would be unwilling to live there:

Dallas
Truckee/Tahoe
Ann Arbor
Telluride/Ridgway (Colorado)

I did really poorly in Tucson also, though (in Spring 2009) it wasn't quite at the level of these others.

Based on what Erik has stated, a comparatively high percentage of locations in California are particularly bad. Not every square inch of California, but a lot of it. If folks don't know how to perceptify a place or to practice extreme avoidance, and thus are just doing a crapshoot in terms of choosing a place, it seems to me better to err on the side of safety and try somewhere else.

Based on what Erik's said, I'd stay away from anything in the "first valley" (the western part of California), if I were choosing blind.

For the most part, the "second" and "third" valleys of California (where I have spent a lot of time) are no worse than any other region I've been. Erik suggests that there are exceptions though -- such as Sacramento (which was an epidemic spot).

I don't have as much specific information about the Eastern/Southeastern half of the U.S. or other countries. I am strongly suspicious about Cleveland. There seems to be an area of NJ that's particularly bad. Oregon and Washington make me nervous enough that I've avoided traveling there, though I don't have enough good reports to say for sure. Even as big cities go, I get the sense from others that Phoenix is very bad.

I most certainly would not choose anywhere in the UK. I don't know that every square inch is objectionable, but the odds of randomly landing in a bad place seem pretty high.

It's my impression that Laura Hillenbrand has lived in the same house in D.C. for many years. I certainly would avoid moving to her neighborhood.

I'd be disinclined to choose any city, if I wasn't going to be allowed to "perceptify" it first. Many areas outside cities have other problems (oil wells, pesticides, etc. etc.), but they are far less likely to have any "?". And the "?" is what makes this disease (at its most severe) horrific beyond almost any other.

I'm not trying to provide a guidebook to where is and isn't bad. That's an impossible task anyway. Ann Arbor was mostly okay in late 2008; something happened since that changed it.

I'm just saying that if people are living in that much pain, moving to a totally different area should be considered as an option.

In some ways, it's a huge mistake for me to be bringing this up. Some people will move to different places and then not get any better (because they've chosen a really bad house or another bad location). Those "failures" then will detract from the point I'm trying to make.

Insofar as people who move do it under strict guidance, the results (with classic ME/CFS....I can't speak to people who just have Fukuda) are undeniable. Having other people do it on their own, according to what's convenient for them, mucks up the statistical results and causes them to insist "But I moved/went camping/whatever and it didn't do me any good, so you're just a subgroup."

Argh.

But it's hard for me to get letters from people who are suffering this much. I have to at least make a public statement to provide the information, even if no one pays attention to it and it's contradictory to my overall goals.

*

Wayne, I believe that getting out of my moldy house asap was the right thing to do. I certainly wouldn't have wanted to wait.

That being said, okay. Here are some reflections.

Looking back, the very first thing that I did after I got the "killer flu" that started my full-fledged ME/CFS was to get my amalgams safely out.

I was obsessed with it and accomplished it within a month, even though I was extremely sick.

Possibly, my intuition may have been guiding me well. If that was when my methylation system totally crashed, the mercury leeching out of them would have become particularly harmful for me at that moment.

I agree with Rich that even if (per Cheney's ETM machine) the methylation supplements result in negative short-term effects, they're important enough in the long term that they're worth taking.

Going back, I would have done everything I could to keep detoxing insofar as it wasn't making me really sick. This would have included Rich's supplements, zinc/P5P, and other support.

There are very few people on the planet who understand just how toxic our bodies can get. I don't think that even the Yasko followers get it, because they're not working on the biotoxins. (One person who's been doing Yasko faithfully for years tried a bit of cholestyramine recently and got very sick with detox symptoms I know all too well. Yep....a whole different class of toxins that the Rich/Yasko approach barely seems to touch.) And the folks I know who do extreme avoidance and csm haven't focused on the Yasko stuff. Only if you get to a clear location and then combine them that it becomes clear just HOW bad of a problem this is.

So attempting to address the toxins along the way seems useful.

I'd have done more neural therapy. That's not an answer to this disease (especially without avoidance!), but it was acutely helpful for me even when i was in the bad place. Anything that can be done to keep the fascia from being gummed up seems to me a really good thing.

The following doesn't fit into something that's "essential," but it's something that looking back was maybe a good thing and might be interesting to especially to you, Wayne.

At one point, I experimented with an extremely high potency (10M) of the homeopathic Natrum Muriaticum, as described in this book:

http://www.amazon.com/Portraits-Hom...95/ref=sr_1_12?ie=UTF8&qid=1291736942&sr=8-12

The author discusses this in terms of bringing to the surface buried emotional "gunk," and my experience was that it was really powerful. It was a physical reaction that was so noticeable in its effects on me that my husband started getting annoyed with me: "If you're going to take that bomb, would you please tell me in advance so that I know what to expect?" I had a number of crying meltdowns as a result of it, but always felt better afterwards.

Looking back though, I think that maybe it was more bringing to the surface buried physical toxic gunk, and probably specifically biotoxins. Nat Mur is dilute salt, and mold acts on the sodium channels and hugely affects the emotions. I think there might be a connection.

Unfortunately, after I started taking Lamictal, the Nat Mur stopped having any noticeable effect on me. The author suggests that it won't work with antidepressants, and apparently that's the case with anticonvulsants as well. Perhaps I'd have been better off in the longterm with just the Nat Mur, but the Lamictal was so helpful I was disinclined to drop it.

I've never found that any other homeopathic remedy did anything for me at all. Just that one.

Sometimes people ask me if I think the efforts I made to kill pathogens while in the bad place (e.g. through antivirals) were useful in terms of getting well after I started pursuing avoidance. With the exception of candida control, I think not. Killing bugs is hard on the body, and much easier to do after moving to a good place.

Any sort of supportive treatments seem like a really good thing, on the other hand. The less debilitated someone is before stumbling out to the Godforsaken desert (or good house in Kansas), the more quickly healing seems to occur.

But getting out is the best solution of all.

Best, Lisa

 

[Dreambirdie]

Here's a reality check on air quality in places I am very familiar with.

I lived in Chicago 18 years, and I concur that Cook County has among the ABSOLUTE WORST air quality in the country.
"People living in Chicago and nearby suburbs face some of the highest risks in the nation for cancer, lung disease and other health problems linked to toxic chemicals pouring from industry smokestacks, according to a Tribune analysis of federal data."
http://www.chicagotribune.com/news/local/chi-pollution-risk-29-sep29,0,4323308.story

I've lived in Santa Cruz CA for 25 years, and will concur that it has some of THE BEST air I've ever breathed.
"The air in Santa Cruz County is among the cleanest in the nation, according to a report released Wednesday by the American Lung Association."
http://www.mercurynews.com/ci_14977250

As for the central valley of CA---yukko! That's where all the pollution from the Bay Area and the LA basin blows away to.
"Premature deaths, hospital visits, and missed days of school and work are among the serious health-related impacts of air pollution in California's San Joaquin Valley that drain the region's economy of $3 billion every year, according to a new study conducted by leading researchers in the fields of economics and air quality."
http://www.hewlett.org/newsroom/study-finds-air-pollution-costs-central-valley-3-billion-annually
http://www.ppic.org/main/pressrelease.asp?i=424

As for the unseen "plumes of mold" that have been mentioned previously, I seriously doubt if these exist, and would need some scientific evidence to back up such claims.

Ultimately it is up to each individual to decide for themselves where they feel the most healthy. MANY FACTORS should be taken into consideration when making such a big life decision, which is definitely up to one's personal experience and discretion to discern.

 

[slayadragon]

Discussion of the places where people with ME/CFS should do everything in their power to avoid living has nothing to do with pollution.

Pollution is a problem for everyone, not just ME/CFS sufferers.

It's a good thing for anybody to avoid pollution. But that has nothing in particular to do with this disease.

Dreambirdie, how is your own health? Is your ME/CFS severe or relatively moderate?

I was happy to see that Joey did well in Santa Cruz a month or so ago. Erik suggested a while back that he had been having increasing problems in that city, but apparently parts of it are still doing okay.

If your own health is (by ME/CFS terms) relatively good, then I'll feel even more optimistic about it.

In general, the problem is that I don't have a good handle on the places that I suspect are the worst because I'm afraid to go visit there.

That was the case in Texas after I got hit in Dallas. And it's been the case in California as well.

The only way to find out what places are bad, I think, is to do a survey of ME/CFS patients in terms of where they're living and what their symptoms are.

If we could do that, it would become clear very quickly where the problematic places are. I can get a sense just by looking at these boards and talking with people, but more cases and some statistical analysis would make it abundantly clear that the extent to which people have specific symptoms and very severe ME/CFS has a locations component to it.

Until that is accomplished though, all I can say is that if people are really sick with those kinds of symptoms, they still might at least consider the idea that their location is to blame.

Best, Lisa