CFS: A Health Treatment Discussion Forum

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Feb 3, 2009.

  1. Slayadragon

    Slayadragon New Member

    This thread is designed to allow people interested in a variety of CFS treatments to share their experiences and knowledge with one another.

    Many of us have learned that using a variety of approaches can allow us to better address our health problems.

    We generally need to do this proactively rather than relying on doctors. And after doing this for a while, a lot of folks here know more about this than any doctors do!

    The nature of the thread is strictly informal. Bring up whatever CFS treatments you like. Share your knowledge. Ask questions. Explain how you’re doing.

    A pleasant atmosphere is important. The goal here is not to tell other people what to do. It’s to share our experiences and provide information.

    Some of you remember that I had a “Status Report” thread like this in 2007. During the past year as my health improved, I stopped doing it.

    I realized recently that I miss that sort of free-flowing exchange though. Hopefully others here will join in.

    Please consider this an open invitation to all. Just keep in mind these few basic goals.


    Discussion of how we can address our CFS through various treatments
    Discussion of any and all treatments of CFS
    Open-mindedness about the possibility that all CFS treatments conceivably might have benefits for some or all of us
    Honest opinions about the pros and cons of all CFS treatments
    Discussion of how various treatments can be used together to achieve improved health
    Discussion about how treatments we’re using are affecting us, for good or bad
    Advice and experience on how to use treatments optimally
    High-level discussion about theories and specifics of CFS treatments
    Discussion of the effects that our health treatments are having on our lives
    Background information that will allow others to evaluate how and why treatments are affecting us as they do
    Discussion of test results of whatever type
    Descriptions of our visits to doctors or other health professionals
    Friendly and positive tone


    Overarching condemnation of any type of CFS treatments
    Discussion of topics not specifically related to how CFS’ers can improve their health
    Chat not related to the impact that health treatments are having on our lives
    Complaints about what’s wrong with the world
    Criticisms of people
    Focus on health problems other than CFS


    NOTE: Those of you who know me obviously shouldn't read my whole health history! Please skip to the bottom and just look at the last couple of paragraphs.

    I will start with a short summary of my own health status and the treatments that I’m currently following.

    I got sick with CFS in early 1996. During subsequent years, I managed with substantial difficulty to finish my Ph.D. in marketing (Northwestern University) and did sporadic consulting projects. I worked as a professor from 1999-2001, but this was so hard on my health that I had to leave.

    My health declined dramatically in 2007, to the point where I was in bed from 18-22 hours a day and had an increasing number of health symptoms. I tried a wide variety of treatments during this time (most of the ones discussed on this board), but just kept getting sicker.

    My history is that of classic CFS. I had over 100 lab tests over that 10 year period, all consistent with what doctors see as indicative of the disease. I have a classic CFS history (head injury and Hepatitis B vaccination followed about a year later with flu-like onset from which I never recovered) and a very wide variety of symptoms consistent with the disease. My responses to treatments for CFS (such as antivirals) were consistent with those of other CFS patients.

    In December 2007, I realized that I had a toxic mold (stachybotrys) problem in my home. I immediately moved out, never to return.

    After a couple of weeks, I put aside all my belongings from the house. A few days later, being around any of them made me really sick. Washed clothing made my heart beat fast. Putting on my mohair coat to go out made me have to stop to vomit repeatedly at the side of the road. Putting my hand into my purse to retrieve something led to a first-degree burn that didn’t fade for a week.

    I thus left behind my belongings as well. Over subsequent months, a few of my health problems disappeared almost immediately. I gained some energy back. My brain fog cleared up a bit. On the other hand, I got a whole lot of weird symptoms that seemed to be related to detoxification of the mold poison that had accumulated in my body over time.

    I was able during this time to identify buildings with big mold problems, and made an effort to stay out.

    Over the next six months, my health improved gradually. I started getting Vitamin C iv’s, and these helped somewhat. I got to the point where I was able to be active for maybe 8-12 hours a day, though I still had a “frozen” feeling a lot of the time. Many of my symptoms dissipated. My cognitive functioning improved.

    I stopped needing most of the treatments for CFS I’d relied upon in the past. I had previously benefited from a variety of hormones (T3, testosterone, estradiol, progesterone, oxytocin, DHEA, adrenal extract, human growth hormone, melatonin), but gradually found that I didn’t need them any more. All my chemical sensitivities went away. All my food allergies went away. I stopped needing Klonopin or any other drugs to sleep well. I no longer needed any herbs or drugs to control my candida problem, and even was able to eat sugar on occasion without ifs flaring up.

    These were remarkable improvements! I still wasn’t wholly well, but I was a whole lot better. I was at the point where I easily could have worked part-time, but decided to keep working on my health rather than pushing it.

    In August 2008, I spent a month in Telluride, Colorado. My health improved there, to the point where I felt close to normal. My ability to identify the presence of toxic mold increased substantially. I not only noted it in buildings, but also in certain places outside. Sometimes the stuff outside was especially bad.

    Then I spent a week camping out in the wilderness. During that time, I became wholly well. I had no symptoms whatsoever. My CFS disappeared entirely.

    After that, I went back to Chicago and all hell broke loose. I realized that places that I went to all the time were contaminated enough to give me lots of bad reactions. The apartment that I was living in was one of the worst!

    So I moved out of that apartment and started avoiding all the places I felt bad. I spent more time outside in places that I felt really good. I made sure to shower and change clothes any time I went into a place that turned out to be really bad. I paid attention to every object in my living space, to make sure that it didn’t have enough mold poison on it to bother me.

    Basically, my whole life was about avoiding mold. This was hard, but insofar as I did it, I continued to feel really well.

    In early November 2008, the Chicago winter started to set in. Cloudy conditions increase the amount of mold toxins in the air, and this problem is especially bad in cities. I started to feel sick all the time.

    So I took the few belongings I’d accumulated and headed down south, where the air reputedly was clear. I ended up in Las Cruces, New Mexico. The air felt great here, so I decided to stay. I moved in with a young lawyer and her two pit bulls, paying $600/month for room and utilities. She has a great house and we’ve become good friends. I spend a lot of time outside camping, because the air is even better in terms of toxic mold when I get out into the desert.

    And I’m well. Really well. Even my brain function has returned almost to pre-illness levels (e.g. when I was in my extremely rigorous Ph.D. program).

    Of course, the problem is that to maintain this level of wellness, I’m quite limited in what I can do. I have to be careful about what buildings I go into and what objects I let into my environment. I could go back to Chicago in the summer, but the amount of effort that I had to put into avoiding mold there was really exhausting. It’s so much easier here that I’m kind of disinclined to leave.

    Now that I’m well, I’d like to start working again. In theory, I should be able to do consulting projects from here (though going other places to meet with clients might be necessary and not doable for me). This kind of work will be more difficult to obtain with the economic recession, but I’m starting to look into it. In the meantime, I’m okay enough financially that I don’t need to take on a job that doesn’t make use of my abilities just to pay the rent.

    My hope at this point is that as my body detoxifies that mold poisons that have accumulated in it, my reactivity to toxic mold will decrease and I will be able to live a more normal life. It’s a miracle that I’m well now, but having more life options would be even better.

    I’ve been supporting methylation for about 18 months with various supplements (FolaPro, IntrinsB12/Folate, hydroxycobalmin, phos serine, molybdenum). I had an insane amount of detox when I started these supplements, but it tapered off over time no matter how high the folate or B12 doses. However, if I stop the supplements for a while and then restart, I get a noticeable detox after only a few days. They do seem to be doing something, therefore.

    A few months ago, I got an glutathione IV. In conjunction with the methylation support, it gave me a huge detox reaction. I found out recently that satratoxins (mold poison made by stachybotrys) reduce the amount of available glutathione; in addition, the Detoxigenomics test suggests that I have a problem recycling glutathione. I’ve yet to find a place in Las Cruces to get glutathione IV’s, and thus have been using liposomal (oral) glutathione. It seems to give me some increased detox too.

    I’m not sure whether glutathione/methylation detoxes some or all mycotoxins (poisons made by toxic mold). However, even if it does not, there’s a possibility that if my body is more toxin-free in general, it will be better able to sequester the mold toxins and thus not be affected by them as much. And then maybe it won’t get so worked out when I get new mold exposures!

    Also over the summer, I had a small amount (5 mg) of EDTA in iv form. It gave me a big detox too. My body is really toxic, it seems. (I now think that toxicity is at the bottom of CFS, but that’s just an opinion.)

    The most frequently cited treatment that’s supposed to detoxify mold toxins is cholestyramine (Questram). Dr. Ritchie Shoemaker recommends that. I’ve used it off and on over the past year, and it does seem to give me a detox reaction too. It’s hard stuff to take though.

    At one point I tried brown seaweed, recommended by Dr. Mary Beth Short-Ray. It gave me a big detox too.

    The other thing that I’m working on is addressing what seems to be a chronic Lyme infection. It seems clear that I never had a problem with babesia, which causes problems in many Lyme sufferers. However, my scary CNS reaction to a small amount (15 mg) of doxycyline while I was still living in my moldy house made it pretty clear to me and my doctors that I had an infection.

    I didn’t attempt to take antibiotics for a long time after that. However, in October 2008 (when I was living in Chicago and feeling really well insofar as I spent every minute avoiding mold), I got an acute Lyme infection with all the classic symptoms. I was terrified of taking doxy again, but found to my surprise that I could take a moderate dose (200 mg) with only mild symptoms.

    I’ve since tried to increase the doxy in order to address whatever Lyme is in my CNS. (This appears to be the LLMDs’ strategy.) I can get to 300 mg with only mild effects. When I get to 400 mg, I get some big CNS effects (mostly depression). That makes me think that it’s probably good for me to do a big dose like that for a while, though purposely making myself feel bad is hard to do these days!

    There have been times after I’ve done a pulse of 400 mg of doxy for a few days and then stopped, after which my brain has felt super-clear. Since my brain function is really important to me, pushing to get all the Lyme out of my CNS seems like it might be worth it.

    The only other supplements I’m taking these days are about Vitamin C (15-30 g), fish oil, and Lamictal (for mild bipolar disorder that seems mostly unrelated to the CFS). I occasionally take a few herbs for the Lyme and likely will do so more consistently once I feel comfortable finishing with the doxy.

    This thread obviously is not just about me! Please post about whatever topics and experiences you’d like to discuss here.

    Thanks much for visiting!

    Lisa P.

    [This Message was Edited on 02/04/2009]
  2. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    It’s so funny the way my name has become “Slaya” on this board!

    Before the middle of 2007, when I tried the methylation supplements, I never thought toxicity was a problem for me at all.

    But it turns out that every single thing that I do that addresses toxicity has a monster effect on me.

    And it just keeps coming out. I wonder how long it would take to get to the bottom of it.

    The important thing is that at least I’m not adding more mold toxins to my body.

    The mold sensitivity is a real pain, but it does have the function of protecting me from more buildup of that stuff.

    I think of all the toxins, the satratoxins (made by stachy mold) are the worst. There’s some research that says that they’re much more damaging than a wide variety of man-made chemicals.

    And the combination of stachy and chemicals seems even more potent.

    The thing that I’d really like to find out is what kind of detox treatment would give me the most “bang for my buck.”

    Recently I’ve been taking a lot (for me) of the glutathione. And I’ve been getting a big detox reaction. Mostly feeling pretty inert.

    I wish I knew whether this was going to help me in the long run.

    The problem is that Erik has never done any detox except by going to the desert and letting the stuff come out through his sweat and breath. So I’m a true pioneer in this!

    (For others: Erik Johnson/erikmoldwarrior is the person who figured out how to get well from CFS by avoiding tiny bits of mold.)

    The problem with testing the wool rugs with the ERMI test is that you’re probably already vacuumed them many times. There may not be too many spores or spore fragments left on them, so the test may not pick up much. However, the chemicals from the spores stick really well to things (especially porous thing), so the rugs could be bothering you even if they come up as okay on that test.

    What makes you think that your previous house had mold in it? Or that your current house does not?

    That’s interesting that you get a cytokine reaction from detox. What does it feel like?

    I think that ciguatera epitope eats dinoflagellates, which have biotoxins in them. It’s my impression that dinoflagellate toxin may be easier to get rid of with cholestyramine than mold toxin or Lyme toxin is. But if you’ve got a variety of toxins in your body, then maybe it’s just the sum total that’s the issue?

    My VCS test got to normal back in the spring, when I was feeling better but not really well. Apparently you don’t have to have a big active neurotoxin problem to have the hyperreaction from complement to new mold exposures.

    My HLA-DR showed that I don’t have the worst genotype. Like Forebearance, I have one mold-susceptible gene and one low MSH gene. But I think that problems with other detoxification channels have really added to my problems.

    Considering the amount of mold that was in my house, I probably would have been a lot sicker if I had a multisusceptible gene or two mold genes. It’s rare that I find a place that bothers me more than my house did.

    Oh, I lost about 30 pounds in the six months after I started mold avoidance! Other people have lost weight doing this as well. Maybe I should mention this first when I talk about mold. Getting well from CFS seems too good to be true, but weight loss is something that a good many of us would like to see.

    Wow, I’d love it if you were to come visit Las Cruces! Or anywhere in New Mexico. I’m afraid to come to Texas (there’s a lot of mold in the air there), but meeting you would be really great.

    Did the people you know who chelated heavy metals get _really_ well from CFS? That’s really interesting.
    ?Dr. Shoemaker says that some patients have been successful in lowering their mold reactivity through chelation. That gives me a lot of hope!

  3. Forebearance

    Forebearance Member

    Hi Kelly and Slaya! (lol)

    I'm really glad you've recovered so well, Lisa. You've been actively detoxing for over a year now and toxins are still coming out! I wonder how long it's going to take.

    I wonder if we are all going to have to take methylation supplements for the rest of our lives. I wouldn't mind that. They're not a big deal, since they're easy to take and cheap.

    Can you imagine reading an ad like this "New diet! All you have to do is move and abandon all your possessions and you will get down to your ideal weight and have balanced hormones!" hee hee!

    I think that the finding that Gulf War Illness is caused by neurotoxins points a big gigantic arrow at neurotoxins as being the cause (or a major contributing factor) of ME/CFS. The two illnesses are so similar.

    I'm glad you have at least ONE detox pathway that works well, Kelly. Maybe for you taking epsom salt baths or something like that would help pull things out through the skin.

    Dr. Mary Short-Ray was very enthusiastic about those Far Infrared Saunas.

    I was talking to her on the phone yesterday and these days she is all enthusiastic about the PK protocol, which is a detox protocol designed by a group of doctors that run a couple of detox clinics on the east side of the country. One's in PA and one's in NC. Here's a link to an old article about their protocol:

    That protocol doesn't use cholestyramine (Questran) to detox people. They use a lot of dietary things, with an emphasis on fats. They are all about fats. I know that Dr. Mary really likes dietary interventions, so that must appeal to her.

    I wonder how it works. I don't think I've ever talked to someone who has gone to one of their clinics before. It's like they took Dr. Shoemaker's ideas and ran with them before most people have even heard of them. But they put their own unique spin on things.

    The thing that puzzles me the most about those clinics is that they talk about the detoxing process taking months. Can it really happen that quickly? If it really happens that quickly, could someone like me even stand to do their protocol?

    I bought their book, The Detoxx Book, right before I decided to start packing up and moving, so I never got to read most of it. I wonder if I should buy another one. I read the patient's book, and it's pretty thin. It just gives dietary recommendations.

    One bad thing about The Detoxx Book is that, since it's intended for doctors, it has the answers to the VCS test in it. I made sure not to read that page! Not that I could remember them anyway, but I don't want to mess up that test if I take it again. I should take it again one of these days, since I am feeling some better.

    Another thing Dr. Mary mentioned was that in the Jan and Feb issues of "Life Extension" magazine, there were articles about a couple of supplements that reduce gene expression of cytokines. The names of the phytochemicals were something like Amwrar and Theoflavins. I'm probably not spelling them correctly. The second one sounds like it comes from tea.

    Anyway, when I have time I'm going to look online and see if copies of those articles exist anywhere. If you could reduce gene expression of cytokines, how would you use that power? And should you use it? I think Dr. Mary said it was being looked at as a way to treat heart disease and other inflammatory conditions. How could it apply to overreacting complement in poisoned patients?


  4. Slayadragon

    Slayadragon New Member

    Hi Grammy, Kelly and Forebearance,

    So many interesting things here. I am going to think about a lot of it and then write back.

    Fore, I loved this line:

    >"New diet! All you have to do is move and abandon all your possessions and you will get down to your ideal weight and have balanced hormones!"

    It had me giggling all day yesterday.

    You’re one of the few people I know who’s taken that much VItamin C, Grammy. It’s interesting that you felt so good on it.

    Vitamin C is the only thing I’ve ever found that’s helped me be less reactive to mold (meaning that I could be around it and have it not bother me). I have to have really high doses for that though.

    When I was taking 30 g per day and getting IV’s twice a week, it helped a lot. There’s no way that I would have been able to survive in Chicago feeling really well without all that Vitamin C, even in the summer and putting every effort into mold avoidance.

    Dr. Guyer first told me about the Vitamin C iv’s and said that they’ve helped other patients to reduce their mold reactivity, in the short-run and then gradually over time.

    He knew a lot about mold toxicity, so I wish he’d brought it up to me years earlier. I think that like all other doctors, he’s unaware of the fact that a tiny bit of mold exposures can debilitate CFS patients. If you see a CFS patient move out of their moldy house and not improve, the conclusion generally is that the mold wasn’t responsible. Not so! I sure do wish all I’d had to do was move.

    I’ve heard scattered reports that high-dose Vitamin C is useful in CFS though. Back in the early days (1980s), some people did report big improvements from the iv form. I don’t know why people stopped using it.

    Mold hyperreactivity seems to be like the anaphylactic allergies that people get to stuff like peanuts or latex. And there is some suggestion in the literature that Vitamin C in IV form can reduce this kind of allergy. Maybe also to bowel tolerance, though that might not be enough.

    (Apparently bowel tolerance tends to be higher for people who would benefit from a lot of Vitamin C. People always are amazed at how much I can take.)

    Now, this next part is kind of high-level, but it goes to the mechanism of why VItamin C might be helpful to us.

    This first paragraph is from a research study on satratoxins (the mold poison made by stachybotrys):

    “During an inflammatory response and early apoptotic events, cells are under oxidative stress, which leads to the production of lipid radicals and lipid peroxidation. Previous studies have demonstrated that lipid radicals are able to inhibit anti-apoptotic genes which allow a cell to enter into apoptosis. In these experiments, the presence of oxidative stress was evaluated by measuring lipid hyperperoxides (LOOH) and reduced glutathione (GSH) levels according to
    established methods [13-16].”

    Lipid peroxidation = the process by which free radicals “steal” electronics from the lipids in cell membranes, resulting in cell damage.

    This seems related to the following comment by Dr. Cathcart, who treated CFS patients in Incline Village with Vitamin C in the 1980s:

    “My suspicion that chronic fatigue was a free radical disease involving mitochondria was because of the beneficial effect of massive doses of vitamin C. I was using the massive doses of vitamin C not for the vitamin C but for the electrons carried by the vitamin C. Ordinarily, when a vitamin C molecule gives up its two extra electrons to scavenge two free radicals, the vitamin C is refueled with two more electrons from the mitochondria. When the mitochondria are damaged and cannot provide the electrons then the spent vitamin C is rapidly irreversibly lost. By giving massive doses of C, this loss is prevented, and the continuing supply of fresh vitamin C substitutes for the inability of the mitochondria to provide the electrons to refuel the spent vitamin C (dehydroascorbate.) Not incidentally, a major function of the mitochondria is to provide electrons in the form of ATP to the muscles. Without sufficient ATP to fuel the muscles, fatigue results.”

    I would like to see more people with CFS, especially those who have gotten somewhat clear of toxic mold, try high doses of Vitamin C to see if it had any sort of positive effect. It’s not going to compensate for a lot of mold, but it could be a little push that makes a big difference when a moderate level of avoidance has been reached.
    ?Kelly, have you ever done this? Or Forebearance?

    Grammy, do you have any guesses about how what your current toxic mold exposure load might be?

    On another note Grammy, that’s a whole lot more csm than I’ve ever tried to take! What kind of effects did you get on it???Didn’t you used to take brown seaweed? What was your experience?

    Thanks to you all for posting on this thread!

  5. Forebearance

    Forebearance Member

    Okay, now you have me giggling, Lisa. I'm picturing the lipids in my cell membranes possessing tiny radios and tvs (electronics).

    The Vitamin C sounds like a great thing. I haven't been able to take a lot of it orally, because it would upset my stomach. And I'm too squeamish to do the IVs. But I applaud you two for doing it.

    Oh good, Kelly, you have that magazine. You can look up how to spell those new supplements for us!

    [This Message was Edited on 02/06/2009]
  6. Slayadragon

    Slayadragon New Member

    That's going to have me giggling all morning, Fore.

    Did you ever tried buffered vitamin C? I use Pure Encapsulations in capsules, and it's never bothered me at all.

    Dr. Guyer recommended that form.

    I used to take Emergen-C, but I do think that 30 g of that had an affect on my stomach. Plus it's expensive to take in that quantity.

    I'm about at the conclusion that the house where I'm staying is developing a toxic mold problem, so I'm likely going to have to move.

    It seems to me that the real key to being a successful Mold Warrior is to be prepared to give up on anything at any time. No emotional attachments and no commitments (financial or otherwise).

    If you can arrange your life that way, things work out just fine.

    Better than being sick all the time, anyway.

    [This Message was Edited on 02/07/2009]
  7. Forebearance

    Forebearance Member

    I've never tried the Pure Encapsulations brand. Maybe I will. I currently take Super Bio Buffered C by Solaray.

    I'm really sorry to hear about your house, Slaya. What a bummer.

  8. Slayadragon

    Slayadragon New Member

    Hi Grammy,

    Your comments are really interesting.

    What I found over the summer was that when I took a reasonable amount of csm (though not anywhere what you're taking!), I got a little bit of gall bladder pain.

    I had found earlier on when taking fish oil that I got a big detox reaction. Dr. Mary Beth Short-Ray suggested that maybe the lack of fish oil was causing a duct in my gall bladder to get stuck, keeping all the guck inside.

    So I decided to work on my gall bladder that summer. I took a lot of fish oil, a combination of apple cider vinegar and olive oil, and some coffee enemas.

    I got huge amounts of gurgling followed by a lot of diarrhea. I got a huge amount of what looked like black mucus come out.

    I think that was from my gall bladder.

    A lot of people with mold poisoning (and maybe CFS/Lyme) end up "losing" their gall bladders. Having them be filled with black sludge is not unusual.

    Just to take a guess, I wonder if the gall bladder fills up in those of us who are mold-susceptible or multi-susceptible because if it were to go through the intestines, it wouldn't get excreted from the body. That would be a functional response.

    But if when the gall bladder lets go of all kinds of stuff, it just gets flushed out through diarrhea, then the gunk has gotten released. At least, I would like to think so!

    Okay, I've got to do Mold Warrior refugee stuff now. This lifestyle certainly is not for the faint of heart!

    A friend of mine wrote to me, "Your equanimity in the face of this is really awe-inspiring. It makes me feel very humble."

    I wrote to Forebearance and said, oh, yes, we Mold Warriors are admirable people all right, but that's an admirable quality.

    She wrote back, who wants to be admirable? I'd rather have a house!

    Me too. Maybe Forebearance will figure out how to build us all styrofoam ones.


    [This Message was Edited on 02/10/2009]
  9. Forebearance

    Forebearance Member

    Yes, that was interesting, Grammy!

    The brown seaweed knocks me out too. I suspect it pulls out more heavy metals than the other detoxing supplements/med. Maybe some of them get loose and roam around.

    Anyway, now that I'm in a less toxic place, I seem to be able to handle the Modifilan better. It's not making me quite so sick. I've been taking it with other types of fiber, too.

    I will try increasing my dose of Vit C, after meals. Maybe if I take it then it won't bother my stomach as much.

    If anyone is interested, there is a company called international dome house in Japan that makes styrofoam houses. I am hoping someone will import them and distribute them in the US soon. There is also a US company called domesintl, which sounds very similar but is different. They are in Mississippi and made dome houses out of fiberglass.

    The idea I am working on is building an inexpensive house that has no structural components made out of wood. It would be okay to use wood in areas where you could see it and keep an eye on it, like the doors or the stair railings, etc. But all that OSB (oriented strand board) that is used in attics these days is like an open invitation to toxic mold. All it takes is one bad storm to cause a leak in the roof and there you go.

    Also, I'm considering the idea of putting plumbing pipes in visible places. Like not buried inside walls, where you can't keep an eye on them. It's sounding like a very paranoid house! lol It would need to have a really nice bathtub, too, for detoxing baths, and a good shower for decontaminating all the time.


  10. desertlass

    desertlass New Member

    I hope that doesn't offend anyone! It was just a joke from when Lisa had decided to change her name to Slay a Dragon.

    Forebearance came up with Slaya for short, which reminded me of a rapper, like Sistah Souljah. And then the whole thing just went from there.

    But when we are not feeling at our gangstah best, we can think of her as Lisa the Liason, because I have never seen anyone work as hard as she does to bring ideas and people together.

    If it weren't for all the hills and valleys that she has been willing to go through, from the metaphorical to the actual, then I probably wouldn't have had the courage to keep going with my own attempt to reduce my exposure.

    Forebearance has been instrumental, too, and look forward to seeing the rest of you who come on here, and what your experiences have been.

    I'll try to report on how I am doing personally, when I feel more objective about it.

  11. redhummingbird

    redhummingbird New Member

    I had to sign in just to say how much I enjoy your posts and humor! It's good to see you again. Very well put-I agree 100% with everything you've said.

    I'll report later on how I'm doing. In brief-I'm on Valcyte. Unfortunately those of us who have that darn multi susceptible genotype have to take additional action to get rid of any infections whether viral or bacterial. Thus, the Valcyte.

    James Hillman wrote a piece on The Hills and Vales...

  12. illroy

    illroy Member

    This is a nice thread with good folks. It seems like there might be the makings of a web site and forum with an emphasis on mold issues, and without too many mountaintops and valleys. :)

  13. Forebearance

    Forebearance Member

    LOL, Lisette! And thank you!

    Hi redhummingbird and Roy! Nice to see you here.

    I hope the Vitamin C does good things for you again, Grammy. It sounds great to maybe be able to get off your medications. I hope that happens for you. Hee hee about your description of how it feels to get rid of toxins. I know exactly what you mean!

    [This Message was Edited on 02/13/2009]
  14. Forebearance

    Forebearance Member

    Hi Roy,

    Um, I like to know people pretty well before I start corresponding privately with them. Did you want to ask me a question? If so, is it something you could ask on this thread? I'll try my best to answer.

  15. illroy

    illroy Member

    I now have a copy of Mold Warriors. Apparently a condensed version is not available. :) I'd be interested in the genotype results of anyone who has had that testing done.

    There are some recent mold related posts on the Yahoo group CFS Research that might be of interest.

  16. Forebearance

    Forebearance Member

    Oh, that is terrific! Yes, it is a long slog to read that book, but it's worth it. In between all the anecdotes there is really good information.

    My genotypes are 17-2-52a and 1-5. So I have one mold-sensitive genotype and one for low MSH. The mold sensitive one is also associated with increased risk for celiac disease.

    It was very enlightening to get that HLA-DR blood test done.

    I'll go check out the mold posts. I'm not sure if I belong to that group or not! There are so many yahoo groups that are CFS related.


  17. illroy

    illroy Member

    Do I understand correctly that the Lab Corp HLA Code #12542 test is all that is needed to determine susceptibility? How much does it cost, and does insurance normally cover it?

  18. Slayadragon

    Slayadragon New Member

    Wow, look at all these responses!

    Your comments were really nice, Lisette. Thank you.

    I had all the recommended Shoemaker tests done, and the original Labcorp price was something like $1500. The BCBS insurance paid almost none of it, and so Labcorp knocked off almost the whole amount. I think I ended up paying maybe $100 total.

    This is absurd.

    I'm trying to remember people's HLA DR genotypes. I could be wrong with some of these though.

    Mine: One mold susceptible, one low MSH
    Erik: One multisusceptible, one mold susceptible
    RedHummingbird: One multisusceptible, one mold susceptible
    Forebearance: One mold susceptible, one low MSH

    Rivka (rrrr) perplexed me. The results she posted clearly suggested that she had one multisusceptible and one mold susceptible gene. However, when her doctor talked to Shoemaker, he said she had two mold susceptible genes. Maybe we're doing them wrong. (Most of us have taught our doctors how to do them!) I don't see how though.

    I visited one patient of Dr. Berndtson in her condo. She had terrible cognitive symptoms but wasn't debilitated. The mold there affected me in the same way. (Interesting how different mold seems to have different effects that often are the same across patients.) Her genotype also was one mold susceptible, one low MSH.

    I now think that everyone with CFS has at least a mild Lyme infection. That seems opportunistic even in people without multisusceptible or lyme-susceptible genotypes.

    What I wonder is if people with multisusceptible genotypes are more likely to get babesia. I didn't find any mention in Shoemaker's work about whether certain genotypes are more likely to get babesia, so I couldn't say.

    I'm pretty sure that I never had babesia. It doesn't sound like Fore had it either.

    Based on reading stuff from the Lyme folks, I'm of the impression that babesia is extremely devastating.

    However, it also seems to be very easily eradicated in people with halfway decent immune systems.

    I thus am of the vague belief that maybe the reason that some people get a whole lot better even from "moderate" mold avoidance is because their systems eliminate this particular infection.

    Of course, I'm defining moderate avoidance as a) not living in a building with much mold at all, b) getting rid of stuff that was present in moldy places and c) not going in any really moldy places (or decontaminating afterwards).

    This sounds like it should be extreme avoidance, but unfortunately not.

  19. Forebearance

    Forebearance Member

    Yes, Roy, that's all you need to do to find out if you have a genetic susceptibility to some kind of neurotoxin. It's best to have it drawn at a LabCorp draw site. If you can't do that, you need to make sure the lab technician does all the right things with the blood sample.

    I had it done along with an MSH test, and both together were somewhere between $100 and $200. That was after my insurance company reduced the price a lot. Like Lisa said, insurance companies don't seem to allow the labs to charge much for these tests. Which is nice for us!

    So yes, I think most insurance would cover it. LabCorp is a reputable national lab that insurance companies are familiar with. And Dr. S lists diagnostic codes your doctor can use for it.

    I know what you mean about what Rivka reported Dr. Shoemaker told her doctor, Lisa. What we're missing is the context in which it was said. Maybe if we had heard the whole conversation, it would have made sense.

    [This Message was Edited on 02/17/2009]
  20. illroy

    illroy Member

    Are the diagnostic codes somewhere in this tome?