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
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
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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
