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Addressing Toxins in CFS: A MultiStage Process

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, Jul 19, 2010.

  1. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Rich recently wrote a post discussing the idea that the methylation/glutathione protocol might be more effective in CFS if it is used after other issues have been addressed.

    Looking back at how my own recovery has progressed, I'm in strong agreement with this. Two additional recovered CFSers have expressed similar thoughts. Here is a summary of our experiences and views on this topic.

    *

    --- In CFS_Yasko@yahoogroups.com, "rvankonynen" <richvank@...> wrote:

    > I have just heard from Lisa (slayadragon) that when she and another person have dealt with other issues, including mold toxins, they have then found that the methylation treatments have been much more effective in helping them to detox. Again, I think this suggests that other impediments to raising glutathione may need to be dealt with first.


    Last week, I visited Mike Dessin at his home in Columbus, Ohio. Some of you may be familiar with Mike's story, which Cort Johnson reported in his newsletter. We found that our experiences in recovering were virtually identical, and similar to that of another recovered CFSer (StormySkye), so I thought I'd relate them here.

    Mike recovered from an extremely severe level of classic Canadian Criteria CFS (literally close to death, with labs that Dr. Peterson later said were the worst hed ever seen) to what is essentially full wellness. My own classic Canadian Criteria CFS was somewhat less severe than his, but for the last year spent about 18-22 hours a day in bed, much of it comatose in a dark room. I'm now at about the same level of recovery as Mike.

    We both had a moderate level of CFS (still substantially impaired) for about a decade before falling into a severe level during the final year or two. He began improving about 18 months ago. I began improving about 2 1/2 years ago. We both are now out of bed and active all day, have no typical CFS symptoms except some residual cognitive ones, exercise vigorously on a regular basis, and are in the process of pursuing jobs of the sort that we had prior to getting sick (with the economy rather than health issues being the limiting factor). Our sensitivities to foods, EMFs and chemicals like air fresheners and cigarette smoke are basically all gone.

    Stormy, who used to post on ProHealth, turns out to have recovered in much the same way. I visited her at her home in Kansas (about an hour from Wichita) a few weeks ago. She was sick with a moderately severe level of classic Canadian Criteria CFS for 20 years, and has been recovered to basically full wellness (at Mikes and my level) for about five years using the same sort of approach that we did.

    Mikes story is generally summarized as neural therapy. Mine tends to be summarized as toxic mold avoidance. This is a substantial oversimplification, since we both did neural therapy and mold avoidance, plus a number of other treatments. I think that neural therapy and mold avoidance are both useful, but Ive yet to see either treatment (or any other treatment) get anyone with true CFS to full wellness on its own.

    Stormy (whose story is generally summarized as supplements) didnt use neural therapy, but her descriptions suggest that what she did had the same effects as Mikes and my approach.

    This is a complex disease and seems to require a multifaceted approach to reverse, but it seems to me that theres a lot of convergence here. Following is a summary of how Im currently seeing it.


    1. Biotoxin Avoidance

    A turning point for Mike and for me came when we each discovered that we had major toxic mold issues in our homes. In late 2007, each of us corresponded separately with Erik Johnson, a member of the Incline Village CFS cohort (studied in the WPIs work on XMRV) who is mostly recovered as a result of what he calls extreme mold avoidance.

    Erik counseled each of us to move to as clear of a place as we could find. He told us to get rid of all our stuff, saying that the cross-contamination would be enough to keep us wholly sick.

    I followed Eriks instructions, putting all my stuff aside and moving into what turned out to be a better but not good home in terms of mold contamination. Later, I visited Erik and learned his methods of avoiding even infinitesimal amounts of mold and outdoor biotoxins.

    After moving out of my house, I spent a year in apartments, five months in a tent, and another year in an RV (so that I could be in places with super-good outdoor air). Currently, my mold reactivity is mostly gone (very few buildings are problems), though cyanobacteria (a poison algae that grows outside in some places) still bothers me. I just returned to Chicago and thus far am doing well here.

    Mike changed residences a few times trying to find one that felt good to him in terms of both mold and chemicals, discarding everything that he owned except for a few papers (enclosed in a plastic box). Two weeks after finding an apartment that he thought was acceptable, he started neural therapy and began to improve. As he already knew before I assessed it during my visit, his current house near Columbus is just about perfect with regard to toxic mold. And though I have a hard time with the cyanobacteria present through much of Michigan/Ohio/Indiana, his house (on a hill) was a lot better than many places in terms of the outside air as well.

    Both Mike and I were in really good shape during the several days of my visit. The exception was when he surprised me one night by getting out the rarely opened box containing his medical records and other papers from his old moldy house. We both got sick immediately afterwards with symptoms that I associate with mold hits. He expressed a bit of suspicion that those papers could be causing that severe of symptoms, but he humored me by putting the box away and taking a shower. We recovered fully by the next morning. He says that hes going to experiment with the box again to see if it affects him in the same way.

    I found Stormys house and the outside air around it (and in just about all of Kansas outside the cities) to be absolutely superb in terms of toxic mold/biotoxins. She and I also went to a neighborhood where she lived about 14 years ago. It had a terrible outdoor biotoxin problem, and we both got sick immediately. She says that it took her a number of years after moving to her current house before she experienced any improvements, and she now believes that the delay was related to her possessions needing time to die down (Erik says this takes 5+ years). Her stuff feels fine to us now. We reacted to toxins in buildings and in the outside air in the same ways and at about the same level.

    I dont think that Mikes level of mold avoidance (which Id call moderate) would have been enough to get him to wellness on its own. Just moving to a better apartment and discarding my stuff helped me a bit, but wasnt the answer. Stormy also believes that just avoidance wasnt all there was to it for her. And while I and a number of others have achieved a high level of health just as a result of extreme avoidance, that degree of life limitation doesnt (in my mind) constitute a real recovery.

    My feeling now is that getting to a pretty low level of biotoxin exposure (including getting rid of contaminated stuff!) is best used as a base to help other treatments to work rather than a be-all and end-all.

    However, without a high degree of avoidance, people seem to have a hard time getting anywhere no matter what other treatments they're using. The synergy seems to be key.


    2. Address Problems with the Fascia/Ground Regulation System.

    The three of us believe that this part is really important, but unfortunately its a bit hard to talk about. Even though the fascia is clearly a problem in CFS (resulting in trigger point pain), there seems to be little understanding of what the dysfunction is or how to fix it in the literature or amongst practitioners.

    Briefly, we suspect that this problem prevents the CFS sufferers system from effectively expelling toxins. We believe that if we had not addressed this problem, the toxins in our system would have gotten stuck there and kept us ill.

    Based on our own experiences in getting well, it seems to us that the toxins that may have the most effect on CFS sufferers (biotoxins and pesticides) are stored in the nerve cells. If that indeed is the case, they need to go out through the nerve endings. Problems with the fascia can interfere with that process and thus stop proper detoxification from occurring, we suspect.

    Mike and I believe that energetic treatments that work on this level of the body (including neural therapy, acupuncture and/or homeopathy) addressed this problem for us, thus allowing detox to take place.

    Stormy states that she experienced the same sort of stuckness of her fascia and got some relief from acupuncture. She says that she then managed to loosen it up permanently with a particular type of probiotic (Three Lac), after which she was able to detox successfully. She wonders if some sort of candida colonization might cause the fascia to get sticky and inflamed, thus trapping toxins rather than letting them move out of the body as theyre supposed to.

    Because so little work has been done on the fascia, its hard to say for sure exactly what is going on. However, the fact that we all independently attribute our recoveries in part to addressing issues with it suggests to me that perhaps it merits more attention.


    3. Pursue Detox

    It seems to us that insofar as the body is in a good location and the fascia is not hugely compromised, it is able to expel at least some kinds of toxins naturally. A variety of different sorts of treatments seem to have the potential of helping that along, once the underlying building blocks are in place.

    Detox is not fun. But its much easier if its done in a good place, and if the fascia is in reasonable shape.

    It was astounding to me just how toxic my own body was. That especially was the case since throughout most of my illness I had no idea that toxins were a problem for me at all.

    None of us started out by hitting mercury and other heavy metals very hard. We saved this for later (see below).

    I used cholestyramine, hot springs baths and saunas, and small amounts of some of Richs supplements for initial detox. Stormy used green food supplements. Mike used various non-drug treatments.


    4. Rebuild the body.

    CFS takes its toll on the system. Moving back to a level of health where homeostasis can be maintained takes time.

    Mike, who was extremely debilitated, used human growth hormone and a variety of other non-drug treatments to get to that point. Stormy used supportive foods and supplements. Thinking back, I think I mostly accomplished this by rest, spending months and months in the Godforsaken desert as my body detoxed and repaired itself.


    5. Address Pathogens

    It seems to us that fighting pathogens while the body is still in a bad environment is a lost cause. Once exposures to biotoxins and other particularly problematic chemicals are low enough, efforts made in this direction will be much more effective.

    I treated a new Lyme infection with doxycycline (300 mg) after about a year of avoidance and found it only moderately difficult to tolerate. Eight months later, I started antivirals (Valcyte and Famvir) and found that they were really helpful in terms of eventually reducing my biotoxin reactivity and improving my brain function. As long as I maintained a high degree of mold avoidance, they werent too hard to take.

    Stormy supported her immune system using supplements such as elderberry and astralagus, and then took various supplements to treat Lyme. Mike also used non-drug treatments.


    6. Address Mercury and Heavy Metals

    I was one of the very first people to try Richs simplified methylation protocol, back when I still was living in my moldy house. Just using sprinkles made me sick enough that I was included in the Adverse Events section of the updated version of his paper.

    After I started mold avoidance, I became more able to tolerate the supplements. I thus started taking the low recommended amounts of FolaPro, hydroxycobalmin and phos serine on a regular basis.

    I actually wanted to go faster with addressing the mercury, and periodically experimented with such things as a chelation IV, brown seaweed and ALA. However, for the first two years this was so painful that I always backed off almost immediately.

    Mike had had a devastating experience earlier in his illness (before getting to a good place) with an IV of methylcobalmin, so he was hesitant to try anything that might give him the same response. Stormy says she saw so many CFSers get sick as a result of this type of treatment that she avoided it.

    Its only been over the past six months that Ive started to feel that its been time to work on mercury and other metals. I started to find that cities were feeling really icky to me, but eventually found that they became tolerable if I was getting enough methylcobalmin. Ive used as much as 5 mg (injectable) per day, and definitely am getting a sense that mercury (or something similar) is being mobilized. While the process isnt exactly pleasant, at this point its not keeping me from being active all day, interfering with my thinking or putting me in agony. The fact that Im getting some fascia symptoms (which Ive also experienced with cholestyramine and Valcyte) makes me believe that toxins are being excreted rather than just moved around.

    
Mike has been doing chelation IVs and taking moderate amounts of ALA for a while. He just last week tried a good bit of sublingual methylcobalmin and said that while it made him a bit tired, it seems like a really good thing for him at this point.

    The idea that we now both can tolerate substantial amounts of methyl B12 feels like an accomplishment for us, and possibly a final piece of the puzzle. Theres no doubt that mercury (and/or related toxins) is an important factor for me -- and possibly for most/all CFSers -- but addressing it at the right time rather than forcing it early on now seems to me really important.

    Best, Lisa

    *


    Following is a list of treatments that Ive used (on more than a brief trial basis and after tapering off all the previous supplements/drugs/hormones) since starting mold avoidance.

    Valcyte,
Famvir
    Doxycycline
    Lamictal
    Cholestyramine
    Saunas/Hot Springs Baths
    FolaPro
    Perque B12
    Phos Serine
    Pyridoxal-5-Phosphate (activated B6)
    B Complex
    Trace Minerals (Molybdenum, Lithium, Zinc, Selenium, etc.)
    Magnesium
    Fish Oil (Omega 3)
    Black Currant Seed Oil (GLA/Omega 6)
    Three Lac
    Probiotics
    Vitamin C IVs (15 g)
    Oral Vitamin C (15-30 g)
    Melatonin
    Neural Therapy (with Procaine)
    Coffee Enemas
    Asyra Energetic Treatment
    Methyl B12 injections (recent)
    Glutathione IVs (recent)
    ALA (recent)
    Piracetam (recent)

    *

    StormySkye asked me to include the following comments:


    When I was diagnosed with CFS/FM in 2002, I knew nothing about mold, MCS, or anything of these associated illnesses. Backtracking my life, one can assume mold exposure but it isn't proven. I am now quite sensitive to the stuff and can tell quickly when I'm being exposed to it or other toxins like chemicals. By the time I was diagnosed I had been "clear" for at least a couple of years. But my condition continued to deteriorate and a rapid downhill spiral had begun.

    I should say here that I was diagnosed by my family physician. He offered me antidepressants which I refused. I did not want anything interrupting the sensors in the brain It was clear to me that the receptors were already being interrupted. He then sent me to an infectious disease specialist. I again was offered antidepressants and refused. She then suggested Tagamet, because it works like an antidepressant. At this point I wrote off the medical community. And specialists. I did work with my doctor on supplements on those rare occasions when I went to see him. He's a good man and told me honestly from the beginning that he really didn't have anything that would help me.

    So I began reading and researching all angles of this. I also researched a great deal about how the body functions, at least as much as science understands it. I kept finding info on candida and yeast. My first treatment was a little acupuncture for a hip that refused to function. I was wheelchair shopping. Four treatments on the hip repaired its function to normal.

    My first self treatment idea was ThreeLac. This proved to be a real miracle for me. The excruciating body wide pain slipped away gently over the first five days. While this doesn't seem possible, my theory on this is that one of the ingredients does pass into the body, going way beyond the intestinal tract. In some way it seems to have cleared out a body wide yeast/candida issue, and somehow removes the goo or thickening of the fluids inside the body, in and around the cells. This is speculation on my part but some reading in a book Lisa has (Dr. William Rea, Chemical Sensitivity, Volume 4, Chapter 1) seems to confirm the issue. ThreeLac was clearly the "cure" since that was all I was using at that time.

    This did not clear all my symptoms and I began using herbs and assorted supplements. I also learned about diet and the alkaline/acid ash issues and cleaned up my diet. I stopped worrying about what the causes or triggers might be and addressed every possible angle. It seemed clear at that time that nobody really knew anyway. I used all natural or herbal treatments. I recovered and all my symptoms went away. I had my life back.

    A bout with pleurisy a few years later knocked me down again and it's been a slow climb back out. Nearly well, again.

    Rich wrote:

    >First, for the people who can tolerate the treatments but do not experience benefits from them, I suspect that the likely causes are that the methylation cycle and related pathways do not have all the nutrients they need to come back up to normal operation.

    I believe this is a reason for not doing this particular treatment. If one addresses the gut and diet issues first, this pathway will open on its own and improvements will be experienced. Or so I believe. I do not believe we should force the issues. The body shuts it down for a reason. We simply do not know enough about how all this works to be bypassing the functions of the body.

    -StormySkye


    *

    Mike Dessin adds the following comments:


    I dont want to mislead people into the idea that Im totally cured. Im living at about 90% functionally. Its a normal life, but I have some limitations. I work out just about every day, but I dont feel perfectly back to normal when I do it. I still get some PEM, but its a 70% reduction over what it ever was during my illness. I still can have periods of exhaustion afterwards. My cognition is good, but I still have a few short-term memory and word recall problems. Mornings are still hard. It takes me a while after I get up before I feel really normal.

    Toxins in general are problems for CFS sufferers. Different ones can be problems for different people, depending on what genetics they have. For me, the main ones were toxic mold and pesticides.

    When I was sick, I reacted very badly to all kinds of things, including Vitamin C, glutathione, hydrogen peroxide, ozone and methyl B12. People need to determine what level theyre at before they decide what treatments to use. Good products that are good for other people can kill you, if theyre used at the wrong stage in the illness.

    People are so sick that they dont have hope. What I want people to know is that its possible to come back from any stage of this illness. It doesnt matter how damaged their heart and their brain are. They can still come back. Ive seen it. Ive been there. They may not be able to come back to 100%, but they can come back to 80 or 90%. People should really know that.

    -Mike
    Aerose91 likes this.
  2. Shellbell

    Shellbell Senior Member

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    Lisa,

    Thank you for posting this info. It gives a lot of food for thought. It is very uplifting to read about your levels of recoveries.

    I know at one time we had a mold issue with our home, even though it was new at the time, partly from a construction defect. The other was our neighbor's property was draining into our home. We thought we had taken care of the problem, but recently thinking maybe not.

    Just before leaving CA to see my new doc, I pulled some shoes out of my closest that I haven't worn in a couple of years. There was mold covering the bottom of my shoes. So obviously there is still a problem.

    Where to begin with me, my docs have no clue, other than my current one wants to start with my gut. The only problem is I can't tolerate the supplements as they drive my CNS crazy, CRAZY! It becomes intolerable, not only for me, but my loved ones as well. My body is just resistent to many therapies that should help it to heal, like there is a block that we can't detect.

    I do know that I am highly allergic to mold. My test was off the charts for some forms, one being candida. And I have bacterial and yeast overgrowth in my digestive tract.

    I am currently getting acupuncture daily for the last month with other forms of energy treatments, but this will stop as of next week. Then I will only be getting once a week. Any suggestions on how to get over supplement sensitivity would be appreciated. Mike and Joey have really tried to help with this.

    Again, thank you for posting this. It really does make sense. I know once I can open the doors for my body to start shedding the toxins without it killing me, I will begin to heal.

    Shell
  3. floydguy

    floydguy Senior Member

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    One of the major challenges is finding a doc who will work with you "outside the box". For example, I am still having difficulty getting treated with anti-virals despite high EBV & HHV-6 - though this may be changing as I have recently once again tested high for HHV-6.

    Were there any diagnostic tests that proved helpful for you, Mike and Stormy Skye to assess progress?

    It will be interesting to see how things go during the dreaded November - April period. Any more speculation on why this time is so awful?
  4. dannybex

    dannybex Senior Member

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    I always experience a downturn during these months as well, and strongly suspect a relationship to low (or even low 'normal') vitamin d levels. Have you had yours tested?

    d.

    p.s. MANY THANKS TO LISA for this thread...very important topic...and almost always overlooked or dismissed when it comes to this dx. I'll try to post more of a reply later this week...
  5. floydguy

    floydguy Senior Member

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    Danny (et al) - Is there any "proper" test (particular lab or specific test) for Vitamin D? In all likelihood Vitamin D is a problem for me and I would like to get it tested. Can getting tested in the middle of the summer throw the test off?
  6. anne_likes_red

    anne_likes_red Senior Member

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    I experience some decline in health without fail every May - late Sept here (Sthn hemisphere). I'm convinced it's Vit D. Also interested to know how it's tested.

    Chiming in with Dan - BIG THANKS LISA (et al) - So much of what you've written resonates here.
    :)
    Anne.

  7. bigdreams87

    bigdreams87

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    Anne, did you ever have your methylation genetics figured out by Amy Yasko?
  8. dannybex

    dannybex Senior Member

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    Just popped in for a quicky reply (sorry to go off topic slightly!)...

    Floyd and Anne --

    Almost any lab should be able to do the test. And the one you want is the 25-hydroxyvitamin D test, also called a 25(OH)D.

    A lot of helpful info can be found here: http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml

    Unless you're out in the sun every day for quite awhile, i wouldn't think that getting tested in mid-summer would throw the test off. I think it takes quite awhile (weeks, months) to raise or sustain levels. And most people and sources recommend the optimum 25-d level should be between 50-80, even though the 'normal' range is from 30-100.
  9. anne_likes_red

    anne_likes_red Senior Member

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    bigdreams, Hi :) no I didn't but I think you might be confusing me with someone else ?? b/c I didn't get any tests. Or maybe you're suggesting I should do?

    Thanks Dan, very helpful link too :)
  10. floydguy

    floydguy Senior Member

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    Thanks Danny! Very helpful!
  11. Wayne

    Wayne Senior Member

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    Ashland, Oregon
    Mold and EMFs

    Hi Lisa,

    Thank you very much for this remarkable post. The account(s) you describe give much to consider, and reason to hope. Thanks also to Stormyskye and Mike for your contributions.

    I just wanted to make a quick comment about detoxification. I use many different (fairly aggressive) treatments to support my own detoxification, including saunas, methylation supplements, coffee enemas, etc. One protocol (that I consider fairly gentle) that may be appropriate for just about anybody is clay foot baths. The strength and duration of each bath can be can be adjusted so that the results can be become highly predictable (my experience anyway).

    I continually find them to be the therapy of choice when I start getting into a "toxic overload" feeling. I just recently ran into some literature on "earthing" (I started a thread entitled, "Earthing" for protection from EMFs), and now feel that one of the reasons I'm able to feel so much better after these foot baths is that I may be detoxing my body of EMFs (or static electricity) at the same time.

    Lisa,, I've heard EMFs have the ability to cause mold toxins to proliferate, probably both inside and outside the body. Have you run across this literature, or do you have any experience with noticing a correlation between the two? Thanks again for this post. It fits in so well with where I anticipate my own health journey will take me.

    Kindly, Wayne
  12. Tal

    Tal

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    Could the duration of time that one has CFS play a role in it's recovery? Like people who've had it longer, may actually be getting through it slowly over time? Maybe not because of something they thought was the reason? Like one person that was mentioned had CFS for 20 years?

    I just wonder as to the reason of recovery. That maybe it's not so simple to point out.

    Can I get a list of those green food supplements? That's something I was looking into trying out a bit more, but I was wondering what others use.
  13. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Thanks to all for your responses.

    Unfortunately, it's very hard to determine whether homes have toxic mold problems. Toxic mold hides inside walls, and it often cannot be seen or smelled. Stachybotrys usually doesn't come up on air tests (it makes a heavy sticky spore that sinks quickly to the ground and then disintegrates into poisonous dust). Often people who are being affected by it don't display any allergic symptoms (I have no mold allergies at all).

    Two interesting options for figuring out mold exposures are IgG tests (which measure recent exposures to various molds) and mold-sniffing dogs (which seen to be able to pinpoint where the mold actually is growing, sometimes within a few inches). Dr. Shoemaker's test panel is useful for finding out if people are being made sick by mold.

    Unfortunately, at least some CFSers are so reactive to toxic mold that even a successful remediation will not allow them to remain in the dwelling without continuing to be made sick by it. In addition, remediation is expensive and stress-inducing. I thus suggest that people who know that they have toxic mold problems in their homes might be best off moving.

    Obviously for those who own their homes, this housing market can make it difficult to do that though.

    *

    Back when I still was living unknowingly in a moldy home, I had a problem tolerating most treatments and many supplements. In addition to the active ingredients, I was really reactive to the cellulose filler in many supplements. I also developed an anaphylactic latex allergy that almost killed me (and that caused dramatic burns any time I even touched a rubber band and then rubbed my fingertips over my skin).

    All supplements are tolerable to me now. I still try to avoid latex/rubber because I'm afraid to stop, but I am able to handle rubber bands without negative consequence.

    Some studies suggest that the combination of satratoxins (chemicals made by Stachybotrys) and LPS (endoxin made by various bacteria, including gut bacteria) have a synergistic effect.

    Thus, treating gut problems may help to decrease the damage of mold poison on the body. Decreasing the exposure to the mold poison at the same time as treating gut problems would be preferable though.

    *

    Mike and I both repeatedly got all the "standard" CFS tests during the years of our illness. Stormy got some of those tests done as well.

    Soon after starting avoidance, I got Dr. Shoemaker's panel done. It suggested that I indeed was being affected by toxic mold, even though I already was avoiding it (moved out of my moldy house, put aside my stuff, stayed out of buildings that bothered me, decontaminated after any exposures).

    It would be interesting to get those tests done again. Even more so, I'd like to get the standard CFS ones done (NKC function, Rnase-L, etc.). Finding out my XMRV status would be interesting, from a theoretical point of view.

    And I just got a blood draw for a comprehensive Lyme/co-infections panel (Dr. Guyer has a lab he likes now), to see if that's still a residual issue for me. (I recently got a die-off to an ozonated olive oil product called Rhizols Gamma, so I think it is. It took the dosage recommended on the bottle -- 15 drops twice a day -- to give me the die-off though. Most CFSers/Lymies can only take one or two drops per day, so hopefully my body will be able to treat these infections fairly easily now.)

    I think it's safe to say that for all three of us, once we got on the right path, just paying attention to our bodies seemed to give us enough information to continue to make progress. Determining appropriate labs that would help in recoveries seems to be a good goal though.

    *

    UV rays degrade mycotoxins. All things being equal, more sun (as in summer) will be helpful in decreasing the "ambient" levels of mold toxin in the outdoor air, thus allowing people who are reactive to toxic mold to feel better.

    However, this is outweighed in some locales by the presence of poison cyanobacteria in the environment. This stuff grows on standing water and (to a lesser extent) in other damp places outside. I've found it to be especially prevalent in the Midwest (Michigan, Ohio, Indiana). Insofar as the water freezes up and gets covered with snow in winter, the problem can diminish then.

    So while CFSers in many locales complain about the winter months (Erik calls November - April "Suicide Season"), a few in places with a lot of cyanobacteria say they feel much worse in summers.

    The only time that seems to be unanimously problematic is fall, when rains cause a) the skies to be dark, b) mold and cyanobacteria colonies to release their spores, and c) existing colonies to grow more.

    *

    Mike, Erik and I have all found that our reactivities to EMF's has dissipated as part of our general recoveries. I'm not sure about whether Stormy ever focused on that symptom, since EMF's are not a big problem where she lives in Kansas.

    Periodically I'm asked how it is that I know that what I'm avoiding is mold/biotoxins rather than other chemical toxins and EMF's.

    At this point, I can quickly tell which of these things is causing me distress. However, it's also true that most of the time, these three things are correlated.

    Unpopulated places that have not been subject to "civilization" tend to be much better than populated ones. This is the case even in places that are very damp and have lots of mold growing.

    Part of the problem with "civilization" is that the poisoned air from inside sick buildings gets into the outside air. But that doesn't seem to me to be the full story.

    Rather, it seems that "civilization" is doing something to make the biotoxins worse.

    Maybe it's that nastier strains of mold are prone to flourish when (say) chemicals or EMF's are present in the environment. Maybe chemicals and/or EMFs cause some toxic molds that already are present to create more toxins or worse toxins.

    There are hints of this in the literature, but nothing conclusive. Hopefully more work will be done on this topic.

    *

    Studies on CFS suggest that the longer that people have been sick, the less likely they are to recover.

    Best, Lisa
  14. lono

    lono

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    Initial tests

    How does a person determine if this is worth looking into?

    My opinion is that you could initially run several of the major tests that Dr. Shoemaker recommends -- melanocyte stimulating hormone (MSH), vasoactive intestinal peptide (VIP), C4a and TGF-beta1. In the U.S. you should be able to get all of these done at LabCorp.

    This won't "prove" that mold or toxins are the cause of your illness.

    However, we do know that not everyone with CFS/ME will have abnormal levels of MSH, VIP, TGF-b1 and C4a. If you do, then my opinion is that it's worth looking into further.
  15. kerrilyn

    kerrilyn Senior Member

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    I remember Stormy from another forum years ago and I was fascinated with all the information she was presenting. I wish I could remember a quarter of it now. Thanks for sharing and I'm glad all three of you are feeling better.

    That's interesting because my experience with pain, which covered every inch/muscle of my body, was to describe the feeling like I was being poisoned.

    I've recently come to realize this too. I didn't give it much merit when I really should have because I worked with chemicals, and that was the first 'assault' that made me ill. Plus I'm a long time sugar junkie. Going through sugar detox has been intense, I feel a lot better afterwards and then I fall off the wagon and the process starts all over again. I'm starting to detox again and haven't experienced horrible symptoms...yet. The only thing I've noticed so far is an increase in itchy/tingly skin. For the first time I'm trying to address Leaky Gut too with glutamine and betaine HCI, greens supplement and probiotics at the same time.

    During the last few months my excruciating wide spread pain has disappeared. I love that!! I'm not sure what I did (if anything) to 'make' this happen but I did start some new supplements. I'm just not sure which came first so I can't definitely say the supplements are responsible.

    Even though the pain disappeared, I noticed other symptoms like OI/Pots have worsened. I read that infections and inflammation can make POTS worse, and that stands to reason to me because there seems to be a hormonal component (w/inflammation) that coincides with my symptoms increasing. So, I'm taking this opportunity of not feeling of completely dreadful and without the horrible pain to start anti-bacterial, anti-inflammatory and anti-fungal supplements. Unfortunately many, like garlic, olive leaf extract and bromelain (I think) can lower blood pressure when I already have low blood pressure.

    What are thoughts on Lactoferrin? I've been really low in ferritin for a long time now and was supplementing iron, increasing dosage and nothing seemed to raise my ferritin level. I've recently read that some bacteria feed off iron. So is bacteria depleting my iron stores, am I just feed them with the iron supplements? I've stopped the iron pills. Not sure I fully understand Lactoferrin but it binds to iron to help with absorption (?) while having anti-bacterial and anti-fungal capabilities, so I'm taking it and colostrum too.

    Wayne, thanks for the info about bentonite clay bath detox. I would prefer to not take something orally for metal detox, and because of the OI/POTS I avoid the heat so that rules out saunas, so that sounds interesting.

    ADD: Hmmm, I just remembered that one thing I did do around the same time as my pain went away was get more air purifiers. There is one or two in every room of the house now.
  16. willow

    willow Senior Member

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    Lisa,

    I've been meaning to thank you for this encouraging and informative post for ages. Thanks also to StormySkye and Mike.

    I understand why mold toxins are a problem for many of us but I can't figure how i could lead a totally mould free life in the UK whilst avoiding other chemicals which are very obviously a very big problem for my system. I do know that I can smell it in a particular neighbour's house and that that rotting leaves, compost type fumes are bad for me.

    I can't find the passage now but I think somewhere you mention that your ligamant and tendon issues might be linked to fascia and detox. Intrigues me because at long, long last I'm using a treatment that helps, I'm starting to recover some function but I've also constant leg ligament and shin splints type pain.

    Have to be honest I still haven't grasped precisely what you mean by fascia issues but I'll see if I can find anything with a William Rea search.
  17. willow

    willow Senior Member

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    This description of fascia helped me see the range of the implications.
    http://www.terrarosa.com.au/define.htm#Myofascial

    I am SO ignorant of terms that describe physiology and symptoms- it's shocking!
  18. willow

    willow Senior Member

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    Ground System

    And I'm assuming this is what you mean by ground regulation system?

    http://www.joyousworld.com/health/ak/biomed.html
  19. floydguy

    floydguy Senior Member

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    Yes, it would be very interesting to see if your MSH, VIP, c4a, TGFbeta 1 have returned to normal levels.
  20. lono

    lono

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    I'd be very interested in that too.

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