Mold, Dr. Cheney and ME/CFS

I was having a discussion on another forum with a patient of Dr. Cheney's, and a couple of people suggested I post an edited version here.

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Even if XMRV is the root cause for all of us (which Cheney now seems to think) doesn't mean that treating it directly is the way to go.

Clearly something (maybe XMRV) is making our bodies unable to eliminate all kinds of toxins. Maybe through P450 (as he suggested to you), maybe some other ways too.

Clearly mold is extremely common in our environments, especially compared to other toxins.

Clearly when the body doesn't eliminate mold, the effects of the mold on our systems are worse.

Clearly mold has a number of strong negative effects on the body that are applicable to this disease, including the creation of oxidative stress, the decrease of reduced glutathione, perforations in the BBB, and destruction of intestinal cells.

Clearly mold also has big effects on the immune system, including Natural Killer Cell function. (That’s a big defect in this illness and a primary reason why we have such bad herpes family virus problems.)

Clearly all those things above are "control points" (as Cheney puts it) that not only cause “downstream” problems but that cause the viruses that we have to flourish.

Nothing ever is going to get rid of XMRV, I think. All we’re ever going to be able to do is to keep it and the other bugs we have from getting out of control.

Cheney's whole approach (even with the XMRV discovery) is to address various "control points" in order to improve the general system and get the viral activity to go down. He's not using antiviral drugs at all, or at least not yet. It's all indirect. He thinks of artesunate as an antiviral treatment, for instance. It's my impression that he thinks of working on the gut as an antiviral treatment.

So according to this logic, mold avoidance also is an antiviral treatment. And considering the fact that the mold is, as far as I can tell, the only reasonable explanation (other than certain pathogens like viruses and Lyme) for all the oxidative stress that we're getting, eliminating it to the extent that we can is a good foundation for anything else we try to do.

None of these points are arguable. They're just complex. But Cheney is a complex thinker, and the other people working in this field are (by and large) not stupid either. It's just a matter of helping them see it.

One issue that I’m seeing is that as soon as people fasten on the idea of a virus as “the cause” (or a cause) of CFS, they immediately jump to the conclusion that drugs to kill the virus are the solution. That may turn out to be the way to go, but then again it may not be.

I have no moral objection to drugs. Lamictal has been hugely helpful to me for the past decade (though with the mold avoidance, I've now cut down on the dose without backlash). The Valcyte/Famvir have been essential in the gains I've made recently. I never would have made nearly as much detox progress without the cholestyramine.

But I think that the drugs have to be looked at as part of the whole picture. Part of it is that some people can't take drugs, and part of it is that optimal drugs to treat this virus have (at least according to the researcher working on the virus) not been developed yet.

But it's also that even if the virus is at the bottom of the whole thing and we wouldn't be sick at all if we didn't have it doesn't mean we can get back to pre-illness just by addressing it. It's not just the genetic changes, it's the fact that our bodies (as Cheney suggests) have fallen behind in doing the things that they need to in order to run optimally. Even a normally functioning system without XMRV (or a “re-stemmed” one) would have a hard time getting rid of the garbage that has accumulated and doing backlogged “repair work.” So giving our bodies as much support as we can on our way to healing, using whatever tools we have, seems to me a good idea.

What amazes me is just how much we actually know about this disease. There are some really good and committed people working on it. The kind of person attracted to this disease tends to be a "new ideas" type of person, and that has really allowed a lot of progress to be made. But everybody's now defending their own little piece. They're all in their own little cubbyholes.

I think the pieces are there to work with though. I wouldn't be making this much progress otherwise. It’s not just the mold, in my case. But I never would have gotten anywhere without addressing the mold first.

And since I've yet to see anyone with confirmed CFS who's been sick for more than two years get anywhere close to being well (meaning as well as Erik or Jonathan or I am) by ANY methods as those of us who have pursued Erik's approach suggests that this is an important piece of the puzzle. (And this includes both Mike Dessin and StormySkye, who both acknowledge that they were following this mold avoidance approach, even if rather inadvertently and without knowing exactly what they were avoiding, as they also did other things.)

I'm not saying that mold is the answer, by any means. I just am saying that leaving it out may not be prudent.

Hopefully if doctors start to understand this, they can factor the mold into the other things that they’re doing and, perhaps, see better results.

Best, Lisa

slayadragon,

Thank you for sharing these thoughts.

Thanks lisa for your points. I wanted to add that Cheney does now think of artesunate as an antiviral in the sense that it prevents replication of retroviruses. He showed a German study supporting this to a patient whom I spoke with, but I'm still waiting on the specific source.

However I do not believe mike ever avoided mold to the extreme extent that you are suggesting--packing up and moving to a completely mold-free environement whether it be the desert or elsewhere. I think it's prudent for all of us to do mold tests with ERMI or another reputable lab in our homes. Also Cheney has already established 3 functional cures, 2 were sick for 20+ years, 1 for 8 years. I also know of a patient that lives in incline village, was seeing Peterson for the last 20 yrs. According to Erik, incline village is a mold hotbed. Yet she still lives there today and is now able to ski intensively after stem cell therapy.

If one of the points you're trying to make the point that mold is an important piece of the puzzle, I wholeheartedly agree with you. In fact I think living in the bay area is what contributed to my decline, but if you are implying that we cannot get better with means
short of following your ascetic mold-avoidance steps, I think has been shown to simply not be true. You said that mold could allow the virus to flourish but it could easily be the other way around. Mold is extremely common and part of nature, so something seems to happen to our ability to effectively desensitize ourselves to and detoxify it. Just saying it's still a chicken and egg issue and xmrv doesn't make it any less of a toss up at this point.

Regarding everything you said about cheneys control points, they mirror my own conversations with Cheney patients, and I blogged very similar and additional points on my latest blog. You may find them to be interest.

Thanks again, and I always enjoy reading your posts.

Cheney might be worth paying attention to if he didn't do 180 degree reversals on his approach every few months.

Chene might also be worth listening to if he were willing to swallow his pride and let being right based on the newest available information supplant being right all the time. He might also have our ear if he ever cures a patient or 3.

Hi Lisa

I'm always interested to read your thoughts - thanks for this. But you say you've yet to see anyone with confirmed CFS who's been ill longer than 2 years get anywhere close to being well. After 8 years of illness I was 95% well for the next 12 years (but then relapsed again a few years ago.) This pattern is quite common I believe - and also there a quite a few people in my local support group who have recovered after up to 15 years of illness.

Jenny

Hi Joey,

What I'm increasingly interested in is what makes some CFSers benefit from treatments and some not benefit.

Certainly we've seen a scattering of patients improve from various treatments, including the ones that you mention. The question, in my mind, is why so many of them do not make progress or decline over time even with treatments that seem like they make sense and that do indeed help some people.

There are lots of factors why people don't get better from CFS. Mold isn't the only stress on our system. And mold avoidance isn't the answer either.....or at least, it's an impractical answer for most people. And I've added lots of other stuff to my own mold avoidance efforts.

But I feel pretty confident in saying that if CFS sufferers are getting a lot of mold exposure, they're going to be handicapped in terms of making any progress getting well from this disease.

The definition of "a lot of mold exposure" varies across people. I suspect it differs based on how sick people are, how many bugs they have, how many other toxins they have problems with, how long they've been sick, how broken their glutathione/methylation systems are, and other things. Just staying out of really moldy buildings may be enough for some people, even those who start off as pretty sick. And decreasing exposures by however much is always going to be a good thing.

I've discussed this with Mike on occasion, and I see him as an ideal example of a person who (if somewhat inadvertently) incorporated mold avoidance into his recovery. (Please check with him to confirm what I'm saying.) His health started to decline over time (maybe as a result of getting XMRV or something else, maybe not, who knows), but the time that things really fell apart was when he got a really severe mold problem in his home. At that point, he got rid of almost all his stuff. He then moved around a whole lot, to the point that he had almost nothing left from that old bad house. Finally he moved to a place in Ohio that felt good to him with regard to mold and chemicals. After that, he started the neural therapy and quickly regained much of his health.

This actually is PRECISELY what I did. I moved out of my bad house and put aside all my stuff. I found a new place. I made a lot of improvements (moving from being bedridden 18-22 hours a day to being up and reasonably functional most of the time) just from that.....even though I realized after really getting clear of mold that the place I was living had somewhat of a mold problem too. And then I worked on detox, including with neural therapy which (recently) I've found to be extremely helpful in pushing me toward the point that my reactivity has gone down to where few buildings and basically no objects have much of an effect on me any more.

Mike had a hell of a time of it. I'd like to think that people can do what he eventually did, but more systematically. If he had chosen a home in Ohio that was moldy, or if he'd had a bunch of contaminated possessions from a previous residence with him, would the neural therapy have been enough to turn it around? I don't know. Neural therapy is powerful. I benefited from it even when I was living in a really moldy house. But I can't believe that mold exposure wouldn't have made it a lot more difficult for him, at the very least requiring more treatments and with slower and less permanently stable results. That's what he told me, anyway.

I have a lot of respect for the work that Cheney is doing. I've heard enough good things about the artesunate that I likely will try it myself, when I'm done with the Valcyte course. Are the people who got functional cures living in better environments than the non-cures? Could the people who come back from stem cell treatments make even more progress if they were attending to their living environments and making even small attempts to stay out of moldy buildings?

I don't know. And until researchers start looking at the issue, no one else will know either.

The stem cell therapy is fascinating. I would consider it myself, if my own reactivity weren't going down so much from other means. My initial feeling is that, like neural therapy, it allows people to tolerate a lot more toxic exposures of all sorts than they did in the past. (Insofar as our detox mechanisms are part of what's broken, resetting everything might allow our bodies to excrete the toxins naturally without adding things like CSM or neural therapy, for instance.)

Certainly, lots of people live in Incline Village and don't get sick. There are a fair number of moldy houses there, but a lot of good ones. The scattered outdoor mold can be vicious for those of us who are already sick, but occasional exposures wouldn't drive down someone whose system is working well. The stem cell story is really encouraging all around, that a person could withstand even occasional exposures to this stuff.

But what I'd really hate is for people to go through stem cell treatments, come back to the U.S., feel better, and then get exposed to lots of mold again. Just because our systems are capable of handling increased amounts of whatever kinds of toxins doesn't mean that we shouldn't be at least a little careful. Even people who've never had XMRV are affected by mold, if they get too much exposure to it.

What I do know is that neither Cheney nor any other leading CFS doctor is actively encouraging patients to look into this issue. (My own doctors have started to do so somewhat after witnessing my experience.) Certainly, these doctors are helping some patients with the treatments that they are proposing, and I am grateful to them for that. But I'd like to see them help a higher percentage of patients, and for the patients who are helped not just to reach a functional cure ("normal activity with some difficulty") but actually get to the point where they're living full lives again.

Insofar as mold is weighing people down, that's going to be less likely to happen.

As for the desert.....Erik never encouraged people to LIVE in the desert. He never lived there himself. He lived in Incline Village for many years after getting well, and now he lives in Reno. The point of "the desert" was for people to get to somewhere really clear for a while, so that the "masking" recedes and they can avoid mold better back in civilization. ("Masking" is a chemical sensitivity term, similar to what happens when people eat wheat all the time and don't know they're sick from it until they stop.) Once they get unmasked, people can do a better job of finding mold in their environments.....for instance, not unknowingly moving into a moldy home.

I took the whole exercise to extremes by living in a tent for a while, because I concluded that it would allow me to detox more efficiently and take Valcyte without getting sick. This experiment has gone remarkably well. I'm way better than a "functional cure" at this point.

Whether I will ever not have to think about mold at all, I don't know. But my life is a lot less weird than you may think, even now.

Best, Lisa

Hi Jenny,

I'm really sorry to hear about your relapse. Do you have any thoughts on what might have caused it?

Have you always lived in England? I suspect it would be very hard for me to do well there. I lived near London one summer early in my illness and got a lot worse while I was there.

One of the board moderators, Mark, has reclaimed most of his health by addressing mold. He lives in the UK. The things he has to do to maintain his health are pretty complicated though.

Best, Lisa

Hi Lisa

Yes, I've always lived in the UK. I am better in hot, dry climates though. I think what triggered my relapse was a ski-ing accident - the minor pain from that escalated over a year to all over pain. This was diagnosed as FM, and my ME got much worse soon after.

Jenny

The problem with the mould avoidance is what to do if it doesn't work. I am XMRV+ and have been lucky enough to travel at times. Leaving my belongings behind and living in a tent/caravan just didn't work for me. Currently I am too weak to leave my bed - let alone my home, for much of the time.

If there was something major in the mould avoidence for me, I would have seen it by now. I practise mould avoidance everyday. Will not live in a house with mould, destroyed personal effects. I have even moved to a different country where I was healthier, and will not live in cities I consider to be mould-traps.etc.

I have total confidence in Erik and he makes a lot of sense. The problem is that what to do if it doesn't work.

Of all the questions that I get, the ones from CFSers living in Texas, Louisiana, the San Francisco Bay Area and England are the most frustrating to me.

CFSers living in these places are almost always SO sick. Often they express some agreement that mold probably is an issue for them and willingness to try mold avoidance. But I've yet to see anyone living in any of these places make much improvement as a result of addressing mold.

Based on my own experiences, I can see why. I wouldn't be able to live in any of these places without getting really sick myself, even though I'm a lot less reactive than I used to be and have become really good at using Erik's "extreme avoidance tricks" to stay well in most other places.

The problem is that it's not just the insides of buildings that are bad. The outside air in these places is really bad too, meaning that EVERY building is a bad building.

I was impressed that Mark, from the UK, did make some progress through mold avoidance. But note, on this thread, that this is accomplished only insofar as he stays inside his home with air purifiers running. If he steps outside, he gets sick again.

http://www.forums.aboutmecfs.org/sh...l-but-XMRV-activated-via-mold-and-Lyme-toxins

It's scary, that entire states or countries can have air that's worse than a lot of bad buildings. That's what I and others who are sensitive to mold are seeing though.

People in these "sick regions" or "sick countries" often move from residence to residence, spend time outside in tents, even get rid of all their stuff....to no avail, because EVERYWHERE is bad.

Though sometimes they do feel better when they follow Dr. Myhill's advice to test for mold by going "on holiday" elsewhere, that doesn't always reveal the problem. If they stay in a bad building, or happen upon a patch of bad air, or bring their contaminated stuff with them, it may negate the whole experiment.

And even if it goes well and they get clear, they still may not feel better right away. Sometimes (especially for really sick people) the first thing the body does when it gets to a good place is play "catch up": dump toxins, kill bugs, do repair work. If that's what's going on, people may feel even more tired (though maybe in a less agitated way) than they did when they were back home.

And then even if people feel better when they're on vacation, that's not going to help them much if they go back to a place where all the outside air is bad. Erik's "trip to the desert" is supposed to get people sensitive enough to know when a building (or in some cases, section of a city) is bad, so that a hasty retreat can be made. But if EVERYWHERE is bad, people are back to Square One when they get back home.

The topic of mold as it relates to CFS is SO complex. I finally decided to compile a bunch of Erik's writings into a "book" so I wouldn't have to keep explaining it to people (a full-time job). People have told me that the compilation finally has made the topic understandable to them, so at least that's a first step.

I think that Dr. Shoemaker's research is pretty convincing that there is a huge CFS/mold connection and that maybe everyone with CFS is a mold reactor. (This does not mean that mold is the CAUSE of CFS, of course. Just that mold exposure makes many or all of us ill.) I'm looking forward to seeing more studies from other researchers on this topic.

So when people who live in a place that I know would make me personally deathly ill tell me that the don't think that mold avoidance is the answer for them, I don't know what to say.

Maybe they're not mold reactors. But then again, maybe they are.

I'm happy to give people the information that I have on this topic. Erik's writings (in compiled form) are remarkably instructive, and I'm putting together some additional materials.

Especially for people in bad places though, they're not a magic solution. They may not help at all, if they can't move to a different region or country.

That's why this needs more attention.

Neither Erik nor I are medical doctors, much less wizards. (My own Ph.D. is in psychology/marketing.) It's nice to help people, but our goal really is for CFS researchers and doctors to start attending to this phenomenon so that better treatments of whatever sort can be developed.

Because if mold really is as important to us as I think it is, we're never going to get anywhere if the leaders in this field don't take it into consideration when attempting to help us.

Lisa

I've been reading Cheney's theories since about 1986. He's constantly changing his mind, and his ideas get weirder as time goes by.

People buy into them, then his theory falls out of favor, and a new one pops up. Oh well, mold today gone to maui.

Thanks Lisa,

I do think that I am a mould reactor and I have known that from childhood.

If only I did feel better on holiday that would be a good start or at least give me the encouragement to do more in this area

Good luck with disseminating this information. Erik is great in this topic. Please don't be too hard on those who don't listen. It may be that until there is a cure or at least any easy method to avoid moulds that pursuing this beyond trying other locations and leaving possessions behind may not be feasible for some.

XMRV+

>It may be that until there is a cure or at least any easy method to avoid moulds that pursuing this may not be feasible for some.

Yes, I know that. Especially for people who already are really sick.

Maybe if the information becomes more widely known, people will suspect mold as being an issue as soon as they get any CFS-type symptoms.

It's a lot easier to pursue this earlier on, when mold reactivity isn't as high and resources (physical and financial) aren't as depleted.

Lisa

:Sign giggle::In bed:

HA ha...dont I know that from experience and tons of $$$$$.

MJ

Bravo, Lisa.

Someone just asked me why I didn't put a link to the compilation of Erik's writings.

I'm still in the process of cleaning it up, but if folks would like a preliminary copy, please let me know and I will send it to you via e-mail.

Write to me at my user name on this board, on Yahoo.

Thanks,

Lisa

Thanks Lisa, I'll look out for the finished copy as buried with information right now. It's a great idea and I'll look forward to reading it at some stage. Thank you.

So.. what if you don't have the mold sensitivity genes, but have CFS? I "tested" the mold theory by moving to a place that was deemed "acceptable" by ERMI test, and even took CSM for a few months. Didn't change my symptoms. I know that I don't carry any of the "susceptible" genes...

A

It's hard to know the answers to these questions when the only person doing any research into the topic is Ritchie Shoemaker. He's focused more on mold illness in general, which is a lot less complex than CFS. But his work is a really good start.

From what I've seen, a really high percentage of CFSers do have the mold-sensitive or multi-susceptible genes. But some do not.

I know a couple of CFSers who do not have those genes but who are very sensitive to even tiny amounts of mold.

Dr. Shoemaker likes the ERMI test, and I'm of the impression that it does a good job of finding really bad buildings. Unfortunately, many CFSers are so reactive to mold that merely having our "stuff" from a previous residence with us can be enough to keep us permanently ill. That would never show up on an ERMI test! And it's the experience of some of us that there are particular kinds of mold that can be harmful even to normal (not-yet-sick) people in amounts that the ERMI doesn't pick up on.

Especially for severe CFS patients, moving generally doesn't reduce mold exposures enough to make much noticeable difference in the illness. Usually they have their stuff with them, which can nullify any benefit. Most buildings have at least a little bit of mold in them. And outdoor mold can (depending on the place) be the biggest problem of all.

Reducing mold to 5% of the original level may not result in any big improvements. It may need to be more like 1%. Or 1/100th of 1%. And that's really hard!

So the question then is, why bother to think about mold at all?

I increasingly believe that lowering the level of mold in an environment can provide a foundation for other treatments to work. People who take antiviral drugs without attending to their living environment seem to me to be shooting themselves in the foot, for instance. It's really hard to take these drugs. Reducing the oxidative stress on the system by decreasing mold levels as much as possible may make the drugs easier to take and give them a chance to actually work.

At least, that's what happened to me with Valcyte.

It also can help patients to keep from declining. Considering that people with this illness do seem to slide downward over time, that's not a trivial benefit.

It also may allow them to very gradually improve over time, regardless of whether other treatments are used. I've heard a number of stories like this: that people have moved from a really bad environment to a better one and, a few years later, recovered some of their health. With so many toxins accumulated and so many pathogens in place, we wouldn't expect immediate improvements. It takes the system some time to reset itself.

Because mold is an allergen, people reflexively think that mold toxicity should act like an allergy. It's a poison! If someone had pesticide poisoning, you wouldn't expect him to recover the minute that he wasn't being sprayed with pesticides. It takes the system time to sort out.

I don't know exactly what to say about your situation.

I wonder though.....where do you live?

Best, Lisa