CFS: Forebearance's thread 31

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Jun 1, 2009.

  1. Forebearance

    Forebearance Member

    It’s been a year since I moved out of my apartment, started over with nothing, and began avoiding toxic mold as best as I could. I’m really glad I did it. It’s been very difficult in some ways, but it has been really good for my health. I decided to make my health a priority above everything else. I was just really sick of being sick.

    Right now I am detoxing like crazy. The process is very draining, so I can’t do a lot more than I could a year ago, in terms of getting out of the house and going places. So I guess the main difference is in my quality of life.

    The biggest difference is that I no longer feel the horrible intense misery of feeling like I’m half dead all the time. That was a huge burden, and it has just lifted and gone away. Instead, I just feel like a normal person who is really tired.

    I’m able to experience restful, healing sleep. Sleep actually makes a difference. If I go to bed an hour earlier, I feel better the next day. That’s miraculous, to me. Naturally, I’m trying to take advantage of this and sleep as much as possible.

    Over the past year, I’ve been gradually getting thinner. It’s gotten noticeable enough now that people are starting to comment on it. I still have a long way to go before I’m back to normal, though. I haven’t changed my diet at all, except that I am trying to eat as much natural fat as I can. Detoxing requires lots of good fat!

    I’m no longer in danger of getting breast cancer. According to my latest thermogram, my left breast has cooled off and is no longer abnormally warm. Taking iodine might have helped with this, too.

    The burning nerve pain in my hands and legs and feet went away very soon after I moved out.

    My sense of smell is back to normal. It used to wax and wane when I lived in my moldy apartment.

    My brain is working better. I can do math as well as I ever could. It’s been ages since I couldn’t think of a word I was trying to say while talking to someone. Last Christmas I won a game of Scrabble, which hasn’t happened in 19 years. (The whole time I’ve been sick!)

    I feel like I am making real progress toward getting well. I feel hope.

  2. Forebearance

    Forebearance Member

    Well, I have a couple of notes to add:

    A little while ago, I went through a phase where all my muscles suddenly got very weak.

    Now I'm going through a phase where I get waves of intense sleepiness right before my usual nap time and bed time. I guess this is what healthy people feel? I've forgotten what it was like to feel appropriately sleepy! lol

    So I guess the best thing I can do for myself is to heed the call and sleep.

    I still have the gut feeling that sleeping on my grounded mattress is doing something to cause me to detox faster.

  3. Forebearance

    Forebearance Member

    Hi everyone,

    I'm happy to report that my website on 'Ideas for building a mold-free home' is finished.
    Here is the link:

    It's a work in progress, so there may be additions or corrections as time goes by.

  4. Slayadragon

    Slayadragon New Member

    Hi Forebearance,

    Your mold-free construction document is terrific! Thanks for putting it together.

    The document that's linked to that, on the basic ideas of mold avoidance, is really terrific too.

    Thanks for putting them together.

  5. Forebearance

    Forebearance Member

    Hi jam!

    Yes, I still take the Thytrophen PMG. Well, do you feel worse since you stopped taking it? Maybe you don't need it any more, like you said. I'm not sure! That is a good deal on it.

  6. Forebearance

    Forebearance Member

    Hi Slaya!

    You're so welcome! I was researching this stuff, anyway, for my own use, so I figured I might as well share it. I couldn't find anything on the web about building mold-free houses that was strict enough for me. So it seemed like there needed to be a web page about it.

  7. Forebearance

    Forebearance Member

    Thank you so much for thinking of me, Jam, but I will pass. My budget this month is so tight it squeaks, and I need to buy some other supplements.

  8. mbofov

    mbofov Active Member

    That all sounds like very good news - you have worked so hard, it's encouraging that it's finally paying off!

    Yeah, detoxing is no fun, but it seems to be something we need to go through. What do you mean when you say that detoxing requires lots of good fat? I'm going through the methylation protocol, detoxing of course, and anything that would make it easier would be great.

    Are you taking extra molybdenum? It seems to help with detoxing.

    I just recently had the Vitamin Diagnostics testing done, that Rich recommends, and it showed low glutathione levels and low folate etc. So am pressing ahead with the methylation protocol.

    Anyways, I'm glad you feel hope - it's a great feeling ....

    Best wishes,

  9. Forebearance

    Forebearance Member

    Hi Mary!

    It's great to hear from you! I'm so glad that the methylation protocol is working out for you! That was cool that you had the Vitamin Diagnostics testing done. Now you have a baseline to use for comparisons.

    Yes, hope is a great feeling, for sure.

    Yes, I do take extra moly for the methylation stuff. It keeps me from getting a headache.

    I should have clarified my comment about fats. Detoxing from neurotoxins, using something that binds with bile and escorts it out, removes fat from the body. You have to make up for it by eating more healthy natural fats. Otherwise you get really dried out.

    I didn't notice the methylation supplements making me feel dried out, but then I have been taking lots of EFAs for years. I think they help with every kind of detoxing.

  10. Waynesrhythm

    Waynesrhythm Member

    Hi Forbearance,

    Just thought I'd do a quick check in tonight. I believe I mentioned in a past note to you that I was interested in doing far infrared (FIR) saunas in hopes it would help address both Lyme and mold issues. Well, I've been bogged down on this for years, not feeling confident I was able to adequately research it to make a good decision on such an expensive item (approx. $2,000+).

    But this past week, I discovered a healing center here that has several health practitioners and sort of an alternative health spa that has a number of interesting things including a FIR sauna. It will run $40/month, but I have unlimited access to the sauna, and unlimited access to some other really interesting things like oxygen concentrators, and a device that is supposed to be really good at stimulating lymph drainage.

    I took my first sauna this evening, and I have a feeling this is going to work really well for me. Today had been an unusually difficult day, but after the sauna and the oxygen supplementation, I'm having an unusually good evening. (I'm even a bit concerned I may not get to sleep).

    I think I remember you mentioning that saunas can wipe you out really quickly. I'm wondering if I'm able to do well with them because I take supplemental cortisol (Cortef) to support my adrenal insufficiency. I believe many people with long standing health issues end up with severely stressed adrenal function.

    Anyway, just thought I'd pass along some of this information. I have been so concerned about some of the therapies that can instigate some pretty difficult detoxification, that I felt I should see if saunas could help relieve some of that burden. My initial experience is that this may just work.

    BTW, as I read some of your above posts, I noticed where you mentioned having your mattress "grounded". I would be interested more about this. Have you written about it in one of your other threads.


    All the Best, Wayne[This Message was Edited on 06/20/2009]
  11. Forebearance

    Forebearance Member

    Hey Wayne!

    I’m so happy for you that you discovered the alternative health spa! That sounds really great.

    How wonderful that it feels like it’s going to work for you!

    Thank you for the Cortef info. I took it for many years, along with DHEA. Eventually, especially after I began the methylation supplements, I stopped needing it. I couldn’t take any without getting overdose symptoms. So I tapered off both those hormones.

    But now that I’ve been doing some detoxing treatments, I could be low on adrenal hormones again. I can feel that the soluble fiber does remove a little bit of all hormones, along with the bile and toxins. I need to find something more gentle to support my adrenal glands. I’ve been experimenting with licorice tea.

    The grounded mattress is a funny story. I was having trouble finding a mattress I could stand the smell of. So I wrapped my mattress with mylar emergency blankets. It was an idea from an MCS website. Then it generated static, so in order to stop the static, I ran a wire from it to the metal frame. You never know what you’ll end up doing with this silly disease.

    Slaya thinks it’s my hours in the park that are making me detox faster, and she could be right. But maybe my mattress is making a difference, too.

    All the best to you, too!
  12. Forebearance

    Forebearance Member

    Today for the first time I felt sure that I was being affected by the weather. We've had really hot and humid weather for days. Today it was practically unbearable. I felt grouchy and depressed and my kidneys ached. As soon as a thunderstorm passed through, I felt better. Wow.

  13. Forebearance

    Forebearance Member

    I'm feeling suspicious of air conditioners these days.

    I think the ductwork in this house is okay, because the furnace didn't bother me in the winter. But when the air conditioning turns on, I feel less good. I'm trying to pin down what the symptoms are, exactly. I wonder if the air conditioner itself, the actual unit, can grow either mold or bacteria in it.

    If air conditioners can "go bad", that would have ramifications for my future lifestyle. Maybe I would want to spend the summers in a place that doesn't require air conditioning. Hmmm.

  14. Chootik

    Chootik New Member

    I've been following your progress and that's wonderfull that you're doing a lot better.

    But, I'm still confused about how can one tell for sure if mold is a problem for me?

    The reason I ask is because I'm suspecting Mold but we did a Mold Inspection of our apartment and the guy couldn't find anything. He checked everywhere but no visible signs of Mold. His idea was just to get better air filters so we did that.

    I did test positive on the C4 Test but that can eider be Lyme or Mold so still not sure which it was.

    If you guys know of a test to find out for sure if one has Mold can you let me know?

    Thanks a lot.
  15. Forebearance

    Forebearance Member

    Hi Chootik,

    Thank you so much for the moral support! I hope you can figure out what's bugging you.

    Well, let's see. At least you have one big hint -- the C4a test. Was it C4a? If that is abnormally high, it means your innate (or complement) immune system is upset about something. As far as I know, that particular cytokine is associated with neurotoxins.

    But that test has to be the one from National Jewish Hospital in Denver. That's the one Dr. Shoemaker uses.

    The approach Dr. Shoemaker uses to discover a toxic mold problem is to test the person who is sick and see if the person shows the signs of mold poisoning.

    Have you ever gone to and taken the BIRS test online? It includes the VCS test, the vision test. It's a cheap way to get another clue. But it also shows the presence of any neurotoxin.

    If you test positive on that one, it would be worthwhile to get a genetic test, the HLA-DR by PCR. It has to be done through LabCorp. The codes are on the Lab Order Sheet that you can download from this page:

    The good thing about the HLA-DR test is that it tells you what your genetic vulnerability is to specific types of biological neurotoxins. If you have a susceptibility to Lyme toxins, it's a big hint to look there. If you have a susceptibility to mold toxins, it's a big hint to look there. If you have the multisusceptible genotype, it isn't so clear.

    Dr. Shoemaker is really, really good at diagnosing people. So if your results are unclear, you can have your doctor do a phone consult with him.

    It was very proactive of you to hire a Mold Inspector! I'm glad you're looking into this. Unfortunately, even professional and well-intentioned mold inspectors can miss toxic mold in buildings.

    I remember when Slaya was hiring mold inspectors, going to all kinds of effort to find good, highly recommended ones. I think she had something like three different mold inspectors look at her house, and it was only the third one that actually found the big problem areas. Then the full extent of the problem wasn't revealed until the remediation began.

    So testing buildings can be expensive and frustrating. The best test that exists is called the ERMI (EPA Relative Moldiness Index). A company called Mycometrics is one of the companies that sells it. My mom and I did it on my parents' house and it was easy to do. It involves vacuuming areas of carpet and collecting the dust in a special canister.

    But the thing is, all mold tests are better at picking up big problems than little ones. My parents' house tested fine on the ERMI, but it still made me sick to stay there. For some people, it only takes a tiny amount of mold toxin around to keep us in a sick state.

    Can I ask you: Are you still living in the same place where you first got CFS?

    What happened to me was, I moved out of the apartment where I first got sick, but I kept all the furniture and stuff with me as I moved from place to place. Having my contaminated stuff around was enough to keep me sick.

    I hope that helps!


  16. Forebearance

    Forebearance Member


    Yesterday I decided that my teak table needed another coat of oil. It's sitting out on the patio because I couldn't stand the smell of it in the house, even wrapped in plastic. It's getting kind of weathered from the rain and sun.

    But I forgot to wear gloves. The houseplant cuttings that had been exposed to the horrible stachy from my temp apartment at the Biltmore apartment complex, and then repotted several times, had been sitting on that table two months ago.

    I burned my hands pretty badly, and all my exposed skin got burned too. After I finished putting the oil on I realized that the mycotoxins were still strong, so I took a shower and washed my hair and washed my clothes. But I'm still burning away. I had a hard time sleeping last night. Mold toxins really interfere with sleep. Rats.

    I really hope I won't have to replace all my bedding. That stupid stachy toxin gets on everything and doesn't wash out. The windows are closed now, but they were open for a while after I oiled the table. i didn't think there were enough toxins to blow into the house, but now I'm not so sure.

    I guess I won't be bringing that table inside any time soon! I'll see how long it takes to denature.


  17. Forebearance

    Forebearance Member

    Sometimes you just have to laugh.

    I read in an online blog that "Collective Wellbeing Detox Soap" was good, so I decided to pick some up. It smells so strong that I can barely stand it, even though it's a natural smell. The detox soap bothers my chemical sensitivities!

    It rained today and that helped my table calm down. I was getting heart pain, kidney pain, burning skin, and blurry vision while I was in most areas of my house yesterday and today before the rain. I tried to be gone as much as possible. Luckily my bedroom was less affected. But I haven't slept well.

    It will still probably be several weeks before I'll be able to go out on my patio again. When will I learn not to mess with those toxins?

    This time I even noticed that the inside of my mouth and nose were burning. I'm sure my reactivity to mycotoxins is very high right now, while I'm detoxing.


  18. Slayadragon

    Slayadragon New Member

    Kelly, I'm so sorry to hear about what happened with your family member. I'm glad that things are better.

    At one point, my sister was being stalked "celebrity-style" by a guy she barely knew. We read a book at the time called "The Gift of Fear."

    It talks about listening to your intuition when it comes to identifying dangerous people. We both thought it was really helpful.

    The reason that I feel comfortable doing this "desert wanderer" thing is wholly because of my taking that approach. That was the case in the city too. There certainly are plenty of dangers there.

    Obviously, sometimes we are in dangerous situations and can do nothing to protect ourselves.

    But I think that most of the time, if we can pick up on what's happening quickly, there are things that we can do to keep ourselves safe no matter what external problems there are.

    Spending the rest of my life in fear of anything would be miserable. But being able to key on things that should make us afraid is really important.

    That's the thing that really ticked me off about the mold though. I really did not know that it was an issue! (Sometimes I think that we all must know that it's dangerous and block that knowledge out because it's too difficult to deal with though.)

    The ozone machine may have helped a little in terms of my being able to go in the house, but I still didn't want any of that stuff. Taking the attitude of temporarily giving up on all possessions seems to be the best approach with regard to this undertaking.

    I think it's much more important to focus on getting reactivity down. If we can do that, life will be much better, stuff included. But I'm increasingly convinced that reactivity is never going to come down until we get really clear of the mold.....including the mold on our stuff.

    The fact that Erik's reactivity has come down so much over the years is enormously encouraging. Lake Tahoe is (I just realized) the worst place in the world with regard to toxic mold. It has this stuff that I think is related to the firefighting chemicals, and it's scattershot over the whole area. And it comes and goes, so that even if you've been in a really great place for a long time, it can sneak up and poison you big-time.

    But even under those conditions, and with his bad genotypes, and without doing any csm or anything else, he's gotten less reactive. And I seem to be getting less reactive. That's the thing that matters. Feeling good in the short-run, and then working toward living a really normal life in the long-run. (Though Lake Tahoe is not the place to choose to do it!)

    Stuff will come, in time. Though at this point, I don't think I'll ever really want it!

    I've not used a FIR, but I did use a sauna at the last hot spring I was at. The location was exceedingly pristine with regard to toxic mold, and I was taking a lot of CSM. I tried to get the heat way deep into my body by starting at room temperature and then heating it up gradually.

    This would feel really good as I was lying there for a while. Then suddenly I felt like something weird happened in my brain, and I got really dizzy and had to get out.

    The interesting thing was the effects that it had on my emotions. Mold, of course, affects the emotions big-time. Each time I did this sauna thing, I would experience for the next day or two an intense version of an emotion that previously had been triggered by the mold. Anger. Depression. Melancholy. Insecurity. And then it would fade.

    After doing this for a few weeks and then vegging for a while, my emotions have become almost rock solid. More so than just about any point in my life.

    I tried to explain to Fore what this felt like. I think that the mold freezes up various areas of the brain. Then when you detox it, it gets unfrozen:

    Imagine that I have my hands in some kind of a contraption that keeps the fingers spread out. It's cold outside.

    Then little bags filled with ice are wrapped around each finger individually.

    At first, when each gets wrapped, the fingers feel really painful from the cold. Then they get really numb.

    That's what the mold does, I think. Eventually the brain gets numb and I don't feel anything.

    Next imagine that a little heating pad is put over each bag of ice, one at a time.

    The bag of ice on the finger melts. As that happens, the finger regains some sensation.

    First it really hurts. Then it goes back to feeling normal and being usable, like it was before the ice. (Hopefully it wasn't frostbitten in the process badly enough that it's fallen off!)

    After a time, doing this one by one, all the fingers go back to feeling normal. This requires some pain in the meantime though.

    Maybe you can come up with a better metaphor than I'm describing. I think that's what's happening though. Pretty literally, with regard to different areas of the brain.


    Does this make any sense?

    Erik used a FIR for a while and said that he thought it might have been somewhat helpful. But he won't use it now, because his mom's house (where it's stored) is not clear enough of mold. My own experience is that my body does not like to detox when I'm not really clear....the process is painful and inefficient, too.

    The Vitamin C iv's seem to do a pretty good job killing Lyme, in my experience. I'd certainly rather do that than use antibiotics. (Though I had no problems with them either, last fall.)

    What dose are you using? If you can tolerate it, a larger amount might be appropriate for that purpose.

    Dr. Guyer uses that UVB treatment. I've seen a lot of people getting it. It will be interesting to hear how you do with it.

    I'm glad that the Vitamin C seems to be working for you. That's the one treatment I wish I could get.

    A lot of oral vitamin C seems better than nothing though.

    Love, Lisa/Slaya

  19. Waynesrhythm

    Waynesrhythm Member

    Hi Fore, Mary, Kelly, Lisa, & Everyone,

    Fore, so sorry to hear about your reactions to that "stupid stachy toxin". It sounds pretty bad, but I have to admit, I got a bit of a chuckle out of your “stachy” description. Makes me think that if that's the most anger you're expressing, you most be a pretty mild mannered person in general. :)

    Mary, good reminder on the molybdenum. It still amazes me how I can forget some pretty elementary things. Iodine is another important thing to consider when looking at assisting detoxification.

    Kelly, your description of exposing your blood to some UV lights sounds like a process I tried for a while called photophoresis. There were a few times when I felt exceptionally better for a couple days. Overall however, I found it to be only somewhat helpful, and didn’t feel it would be a good long-term therapy that I could afford and be sufficiently effective.

    Lisa, I’ve been reading some of your accounts of your recent lifestyle. I find it all pretty intriguing, and really appreciate you sharing your experiences and perspectives. I also appreciated your offer of helping assist others with dealing with mold.

    Interestingly, I began working with a health practitioner recently who does “neurolink” work. I paid for my first visit, but she is giving me additional visits at no charge because of my physical and financial situation. On our last visit, she energetically tested me on different mold vials, and found one I was severely reactive to. By the time she got done doing some of her neurolink techniques, I was able to hold the vial without any discomfort at all. Whether this translates into a new ability to be less reactive to everyday molds in the environment remains to be seen.

    One area I’m considering is the role lyme-induced ammonia toxicity has on so much of my reactive nature to mold and other environmental toxins. I posted on some of this on a thread I started entitled "Leaky Brain Syndrome -- Ammonia Buildup”. I’ll paste part of this post at the end for anybody who might be interested. The full thread can be accessed at:

    In this thread, I referenced an article by David Jernigan. He has worked extensively with Lyme patients and feels most Lyme symptoms are a result of ammonia created by the Lyme bacteria. He also mentions that FIR saunas are a good way to eliminate ammonia. He feels neurotoxins created by Lyme can stick around for years unless aggressive detoxification is undertaken. Apparently these neurotoxins can remain problematic even if the original Lyme infection is controlled or eradicated.

    I’m continuing to be encouraged by the FIR saunas I’m doing. I’m getting some minor detox symptoms, such as small boils and some extra sinus drainage; nothing that’s not manageable. I also feel my sleep and cognition has somewhat improved. This description may not sound resoundingly positive, but I tend to think long-term. I figure if I do these saunas 3-4 times/week for several months, I may be able to gradually gain ground. I’m encouraged from a telephone discussion I had once with a woman who experienced debilitating mercury poisoning from some dental work, and was able to recover after doing FIR saunas for several months. Just another reminder that for most of us, effective therapies are going to take time. Not too many shortcuts around these health issues we deal with.

    We just got the most recent issue of Townsend Letter which was dedicated primarily to Lyme. It is quite a collection of articles and therapies by various Lyme treatment practitioners. One particular article was entitled “Ground Zero for Lyme Is the Mouth”. It was really quite the eye opener and has me more focused than ever on oral health. The thought of having large amounts of Lyme bacteria so close to my brain putting out all kinds of ammonia and other neurotoxins is quite sobering. And always serves as somewhat of an impetus to get myself over to the health spa to continue with my FIR saunas. Not easy to do, but am somehow finding the will power to keep going.

    Here’s a link to the latest Townsend Letter issue. They usually publish these articles online fairly shortly after the publication comes out.

    Well, I hope this hasn’t been too rambly. I remind myself sometimes something that I heard was said by a well known writer. Namely, “How can I know what I think unless I write it down first?” I find taking the time to do some of these posts does indeed focus my own thinking.

    All the Best to All, Wayne


    Lyme Leaky Brain Syndrome

    Although many people have heard of Leaky Bowel Syndrome (LBS), few have heard of (Lyme) Leaky Brain Syndrome (LLBS). I coined this term when I became aware of the damaging effects on the blood-brain barrier (BBB) from the accumulation of Lyme-induced ammonia in the brain. Ammonia in the brain is a primary cause of neurological and psychological hypersensitivity. Ammonia alters the permeability of the BBB, enabling larger molecules, such as common amino acids, to cross.

    When these random molecules touch the brain tissues, they set up hypersensitivities, otherwise known as cerebral allergies. The symptoms of these cerebral allergies are unique and depend on what part of the brain is being affected. Ammonia-induced Leaky Brain Syndrome is one of the primary causes of multiple chemical sensitivities, cognitive dysfunction, chronic fatigue syndrome, and a myriad of other chronic conditions.

    There are only a few ways ammonia can become a problem in the brain. Severe liver disease is a well-recognized producer of global or systemic ammonia. No one knew, until I discovered quite unexpectedly, that Lyme spirochetes could cause ammonia to accumulate in localized areas of the brain.

    The full article can be accessed at:
    [This Message was Edited on 07/04/2009]
  20. Waynesrhythm

    Waynesrhythm Member

    Hi Kelly,

    RE: "Are you still using clay?"

    Yes, I continue to do my clay foot baths. I probably average doing them once or twice a week. They almost always seems to give me a boost in my sense of well being. This can start while I'm actually doing the foot bath, or I may not notice it until a few hours later. Only occasionally does it create some kind of minor detox reaction.

    I've actually come to believe that this sense of well being is more than a result of just the detoxification properties of clay. The clay almost seems to have some sort of energetic effect that helps to normalize some of my neurological function. Sort of like a "harmoning" effect.

    I'm also starting up with holding a small amount of clay in my mouth to draw toxicity out of my gums and teeth. I usually do this every day, normally after I've done the "oil pulling" technique. It continues to amaze me how these techniques can usually pull me out of my early morning funks to somewhat of a sense of normalcy.

    I've just in the past couple days starting ingesting a small amount of clay (1/4 tsp) to help absorb toxicity in my GI tract. I thought I'd experiment with this (along with my charcoal caps) and get some kind of sense for it before I contemplate moving on to cholerestine (sp?), which I believe is a drug. I always try to avoid drugs if at all possible.

    Fore, I was going to mention that your experience using a FIR sauna could possibly be the result of having some kind of toxic substance inside the sauna. I've heard that not all sauna manufacturers are careful about using non-toxic substances (glues, etc.) in their construction. Just a thought. It had seemed to me a bit unusual that you would experience detox symptoms after such a short time inside a sauna. But who's to say?

    Warm Regards, Wayne