If your hypothesis about dr Jamie is true (about treating all other infections) then it should apply to me too. I've treated TBIs, did methylation, ozone, and so much more. I'm in a location that slayadragon says is very good in terms of mold. all that's left for me is the retrovirus. Maybe I'd do well on the drugs too, but I don't wanna be on them forever. As long as permanent resolution is a viable goal, I'm gonna hold off on drugs that would increase resistance and viral tropism.
Okay, I see my name here, so that means I get to discuss the point.
I said that Mike Dessin's place in Columbus was surprisingly good in terms of biotoxins. The house itself is excellent. The outside air in almost all of the Midwest (at least in mid-summer) really sucks, but his house is at a higher altitude than most of the surrounding area and thus not too terribly bad much of the time (though I was much better inside with the HEPA system running than outside). And since Mike got rid of all the stuff from his old moldy apartment right before he started neural therapy, the cross-contamination that plagues many ME/CFS sufferers as they try to get clear of mold has not been an issue for him.
(While I was visiting, Mike got out a box of stuff that he'd kept from his old moldy apartment. He gave me some papers to read without telling me when they were from, causing me to feel bad right away. Fortunately, I know how to stop the reaction by decontaminating - changing clothes and showering - since otherwise I'd have been sick for quite a while just from the papers. Never underestimate the power of the "stuff factor"!)
Joey, Columbus, OH, is not what I would consider a "good location." Maybe it's not the worst place in the world, but it's not very good either. I don't know what the outside air near your apartment in particular is like. I don't know what the inside of the apartment is like. I don't know whether the stuff that you've brought with you from previous places that you've lived is problematic.
So I can't say whether or not biotoxins are a problem for you, in your current environment. They could be a huge problem, as far as the info that I have goes. When I asked Mike how your place felt to him, he just said, "It's not as good as this place." Which, all by itself, could mean that it's not nearly good enough to get you on the road to recovery.
I've not been able to get from Jamie specific information on whether or not the place they lived at near the Berkshires had mold in it. She may not know, or maybe she prefers not to share that info. Three out of four of their family members got sick with Lyme there. It could just be that Lyme was really fierce there, and that XMRV was making that problem worse. My suspicion, when I see cases like this, is that a moldy house might be causing people's immune systems to not be able to keep the pathogens (both XMRV and Lyme) in check, but I don't have any evidence of that.
The family moved to Arizona nearly five years ago. They then moved to New Mexico. The air where they're at is not perfect, but it's far superior to anything I've found in the Midwest. She says she's looked hard for mold in her current house and believes it's good. Erik says that possessions die down from mold toxicity in about five years, especially if the air is dry and hot (which it is in the SW).
So I can't say for sure that Jamie's living in a good environment. I would guess that it's not a pristine environment (meaning one that is equivalent to "extreme avoidance" all by itself). But the possibility that the environment she's in is in the top 5% of those inhabited by ME/CFS sufferers in general does not seem to me to be wholly unlikely, considering the information that I do have.
I don't know enough about antiretrovirals to be able to judge whether theoretically this treatment should be working for them. Clearly it is working though.
I kind of think we can drive ourselves crazy trying to parse out every little biochemical link that might occur. As Dr. William Rea suggests in his excellent new book ("Reversibility of Chronic Degenerative Disease and Hypersensitivity: Regulating Mechanisms of Chemical Sensitivity"), it seems to me that ME/CFS and other sorts of illnesses related to and/or caused by toxicity function much more like an "open system" rather than a classical "cause and effect" model.
In an "open system," everything has an effect on everything. If you can subtract anything bad, everything gets better. If you add anything bad, everything gets worse.
That's what Dr. Dale Guyer (who is an excellent intuitive clinician) tried to tell me a couple of years ago. His thought was that it doesn't matter what pathogen or what toxin you address. Just work on the entire load and eventually things will get better, he said.
The reason that he got excited about my extreme avoidance was not because I was able to do be well as a result of doing that (he actually fairly strongly disapproved of the tent in the desert thing as a solution), but because it allowed me to effectively work on detoxifying and killing pathogens while I was really clear. Most ME/CFS patients could get well if they got their general toxin and pathogen levels down low enough, he said. The problem is that they're too sensitive to be able to do either of these effectively, without destroying their system strength in the process.
What I wonder increasingly is whether Jamie and Ali might be benefiting from the drugs they're taking not because the drugs are addressing the retrovirus specifically, but because they're reducing their general pathogen load at the same time that they're pursuing detoxification.....and doing those things in a place that's good enough to give them what I've previously referred to as a "leverage point" or "control point."
So far, their experience sounds just like mine - a combination of biotoxin avoidance, methylation/detox support and pathogen killers.
They (I am going to posit) in a good place. I was in an excellent place. (Ali's taking Actos is basically Shoemaker's recommendation on how to transform a good place into a very good place.)
They're taking a combination of Metafolin and B12, which I've also used.
They're taking antiretrovirals (and have done Lyme treatment). I'm taking herpes antivirals (and have done Lyme treatment).
I tend to think, reading this, that the HAART drugs work a bit better than the Valcyte/Famvir combination I'm using. They showed improvements faster and didn't have to be in as good of a place while they were using them.
But I'm not at all convinced that the HAART drugs work DIFFERENTLY than the Valcyte/Famvir combination, in terms of the question of "Why are they getting better?" It may not be that the drugs are working the way that you think they should be (or shouldn't be). Maybe it's just that with fewer total stresses (pathogen and toxin) on it, the Ground Regulation System settles down and things start to right themselves.
This is actually really good news for them if I'm right too.
If the HAART drugs are working the way that you think that they should (or shouldn't), that means staying on the drugs forever. Kind of a drag.
But if what we're trying to do is to reverse a messed-up homeostasis, there's a potential for real healing to occur.
At some point, if you can chip away enough toxins and pathogens, the body should start working on its own again, as it did before it got thrown off track. If you can do that - and if you can identify the factors that caused it to initially get off track and then avoid them - hopefully it will stay there even without the drugs.
I think in my case, the primary factor that caused me to get off track was the mold exposure. If I can get the toxins and pathogens that accumulated as a result under control, and not move back into a mold pit, perhaps I will be able to stay well permanently.
I think that Dale is right about the extreme avoidance not being a good permanent solution. It hopefully is just something that needs to be done to get a foothold.
I had been corresponding periodically with Jamie about her progress and was going to suggest that maybe she pursue the methylation stuff. But she figured it out herself. That doesn't surprise me entirely, because she seems to have gotten to the point where she's thinking integratively (in the true meaning of the word). It's not a matter of using one tool to solve the problem - it's playing with each piece, carefully, to move everything from a dysfunctional homeostasis back to a functional homeostasis.
Most people don't know how to do this. It's not how we're taught. It requires a lot of knowledge, both in terms of academic knowledge and intuitive knowledge. It's interesting to me that Jamie's historically practiced complementary medicine, because it seems to me that even though she's using drugs, she still has that "fiddle with it until it feels right" mentality. And that, I think, may be part of why she's succeeding while other people are not.
That, and (I'm postulating) living in a good house in a good desert while she's in the process of getting well, of course.
Is restoring the functional homeostasis what stem cells would do? I'm not sure what the mechanism is, but it seems plausible to me in terms of the general principle.
One thing I wonder is whether the stem cells might clear out the fascia. Mine being so gummed up has been a tremendous barrier to getting well. Neural therapy has helped (in combination with the additional three factors of being in a good place, killing bugs and removing toxins), but it's quite inefficient.
Dr. Rea's comments about how the period when the "gel/sol" consistency of the system turns into "styrofoam" being a major permanent shift hit home to me. Getting that part of the system to become nice and evenly flowing is really hard to do. If stem cells did that, I'd go get them right away, since (with the other things I'm doing) I'm in the position to benefit from that improvement (and not to mess it up again by inadvertent additional toxic exposures).
Maybe you should try reading Dr. Rea's book. It's the first thing that I've found that explains why neural therapy can be so important, and has been really useful to me in terms of consolidating my own thoughts about what's going on.
Best, Lisa
