CFS: Forebearance's thread 27

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

  1. Forebearance

    Forebearance Member

    Hi everyone.

    I was just talking with Lisa the other day, and we were saying that there must be an easier way to do a mold avoidance lifestyle than the way we both did it.

    It has worked to make me start getting well, but it has been really difficult and expensive. Hmmm. I'll recap what I did:

    I sorted all my stuff, put the sentimental things in storage, and got rid of the rest.
    Then I moved to a new apartment and started over with all new things.

    Doing that made me get really sensitive to mold poisons really quickly.
    So I quickly found myself in the position of not being able to stand being around objects with mold toxin on them or to stand being in places with toxic mold growing there.
    Even very small amounts of mold toxins caused me a lot of pain.

    When my temporary apartment became contaminated with mold because of a water leak and a moldy fan that was used to dry it out, I hadn't found a good permanent place to live yet. And I had to get out of there.

    So I had to spend some time being homeless and bouncing from place to place while I hunted for a new apartment. Finally I found one.

    How could this be done in a better way?
    Would it be better to do it more gradually?

    If I had moved but had kept all my stuff, what would have happened? Maybe I would have only felt a little better. But at least I wouldn't have been getting worse.

    Then could I have gradually gotten rid of or put away my possessions and replaced them with new ones?

    I don't know. I'm just thinking out loud.

    It's hard to be a guinea pig who is trying out a new theory.

    I really appreciate not feeling half-dead any more, but it is hard to have to worry about being around mold toxins all the time. And it is hard to be limited in the places I go.

    And it's hard to do the mold decontamination routine. Every time I leave the house, when I come home I take a shower and wash my hair and change clothes. So naturally I don't leave the house more than once a day. My hair can only take so much washing.

    And I wash my clothes after one wearing. Except I've been keeping a pair of lounge pants that I only wear around the house, and a few house only tops. Those pants I wear a few times between washings, like one would usually do.

    I'm still trying to figure out how often I should wash my coat. If you read this, Lisa, do you wash your coat after every trip out of the house? And hat and gloves and etc.?

    I know this lifestyle, as strange as it is, is better than being as sick as I was. But still, it seems like there should be a better way. There should be something better than this to get well from CFIDS!


  2. Forebearance

    Forebearance Member

    Okay, I have received some blood test results from tests I had done last November. At the time, I had been on csm for a month, but I was still homeless and moving around a lot and getting exposed to mold toxins more than I would like.

    Here are the results:

    CD57 64

    Western Blot:
    IgG 41 +
    everything else negative

    C4a 6997 (high)

    MMP-9 531

    Leptin 62.4 (high)

    Vitamin D, 25-Hydroxy 24.5 (low)

    MSH 25

    Now, I need to go hunt for my previous results so I can compare them.
    [This Message was Edited on 02/08/2009]
  3. Forebearance

    Forebearance Member

    Okay, here are the results of the tests I did in Feb. of 08:

    Leptin 31.9 (normal is 4.1-25.0)

    VEGF 82 (normal is 31-86)

    C3A 196 (normal is <205)

    MMP-9 893 (normal is 0 - 983)

    C4A 5532 (normal is <2831)

    MSH 29

    I appear to be getting worse in some ways. Well, it's not too surprising, since last fall was a really stressful time for me. I spent most of the summer and fall being exposed to stachy in my temp apartment and in hotel rooms, and then being exposed to who knows what kind of mold at my parents' house for the month of October.

    So I would hope that if I get another round of tests in the future, they will show some signs of improvement. I want to wait a little longer before getting them again. My doctor and I will probably decide on two or three tests to follow as markers of my health and only do those. I can't afford to get all the tests every time.

  4. redhummingbird

    redhummingbird New Member

    Holy Cow! That is a low CD57 result! LLMD's sometimes use this to see if someone has chronic lyme. They like to see it above 200. At 4 yours is indicative of chronic lyme.

    But then again it's one of those tests that isn't 100% reliable.

    Was your Western Blot through Igenex?

    Anyway, no wonder you've had such a strong herx reaction to the colloidal silver.

    Do you ever remember any strange rashes or anything?

    Even though Shoemaker sees the C4a as being mostly mold related, other doctor's use that (plus C3a) as an indication of lyme and/or its toxins. I know you were living at your parents at the time and being exposed to mold but I wouldn't rule out lyme as a factor also.
  5. Forebearance

    Forebearance Member

    Oh Kelly, I could really go out looking funny, couldn't I? I could wear a plastic raincoat, and a mask, and maybe an aluminum foil hat! hee hee!

    My insurance company seems to be really mean, stingy and stubborn. And they don't like these new-fangled tests I keep getting. Every time I get a round of these type of blood tests, my insurance company argues with the labs for months until the labs finally cry uncle. And then I get a bill for some very small amount, compared to what it could cost. So I guess it's lucky for me. But still, there is a limit to what I want to spend. And it's probably not necessary to follow every single lab test every six months.

    My doctor seems to want to re-test me every six months, because this is all new to her. Blood tests make her feel comfortable.

    I hope that you do get to finish reading those books. They are really worthwhile. Even if you don't remember everything, you can always go back and look things up.

    Oh redhummingbird, I messed up in reading the results of my CD 57 test! It is actually 64, not 4. I went back and changed my previous post.

    I've been reading up on the CD 57 test, so I understand what it means. The normal range is 60-360. But it looks like some LLMDs consider anything under 100 to be indicative of chronic Lyme disease. They try to get people's CD 57 above 100.

    Here's a quote from a good article about the CD 57 test:
    "As a measure of immune status, it provides an indirect measure of bacterial load and severity of illness."

    The rest of the article is at:

    It looks like I had my CD 57 test done at one of the right places, LabCorp. I'm glad about that.

    My Western Blot was done through LabCorp also, so that wasn't one of the recommended places to get it. But it's still probably better than the two previous Elisa tests I've had.

    In further news from me, I'm taking February off from taking csm. I'll take at least one month off. In the meantime, I need to find something else to take to pull out toxins. The war caused by the colloidal silver seems to generate toxins inside me, and I've been feeling them building up.

    I tried Modifilan, which is Dr. Mary's favorite. It's made of brown seaweed. It doesn't feel all that good to me. I think that the seaweed products may mobilize some amount of heavy metals, and I probably have a lot of those. So then I tried Fiber Fusion by Enzymatic Therapy. It seems to agree with me pretty well. It's got psyllium, oat bran, citrus pectin, and a few other misc. things. I'll try a higher dose of it today. There's alway my standard Benefiber, which I've been taking all along. But I think I need something a hair stronger as well.

    I want to note that I've woken up with swollen and stiff hands almost every day since moving to this place. I have been told it's a sign of detox. So I'm taking it as a good sign.

    My chemical sensitivities are still through the roof. I couldn't stand the new futon that arrived yesterday. It has a strong smell to it. And then I was made sick by a bouquet of five little blue irises, which have no discernible smell.


    [This Message was Edited on 02/08/2009]
  6. Forebearance

    Forebearance Member

    Well, I've been taking colloidal silver for a while now, and it's starting to cause some strange symptoms. I can't tell if what I'm experiencing is more like Herxing or detoxing. It's one of those two things, anyway.

    I was feeling pretty good before I started the cs, and now I feel lousy. Rats. I guess it will pay off in the long run, so I'm still glad I'm doing it. But this is no fun.

    Here is what is going on with me:
    increased tiredness
    increased heart rate
    my hands were swollen all day yesterday, and today looks like it will be the same
    blurry vision
    one eye floater, yesterday
    extra smelly stools
    increased pimples
    headaches/sinus aches
    clenching teeth while sleeping
    ache in center of torso
    muscles very sore and tender - wearing a bra hurts
    dark circles and bags under eyes
    cracks and pops in my joints

    I tried lemon water, vinegar in water, fiber pills, increased water intake.
    Finally last night I took my enzyme combo, and that helped with the ache in the center of my torso. I thought it might be coming from my intestines or gall bladder or back muscles. It was hard to tell. It's better today.

    Naturally I was terrified that the back ache might be a sign of something in my environment poisoning me, even though it wasn't quite the same as my usual stachy exposure kidney ache. So I went for a walk outside. I was SO happy to find that I felt just as bad outdoors as I did indoors. Whew!

    It's not often you hear someone say "YES! I feel lousy!" lol

    [This Message was Edited on 02/17/2009]
  7. Forebearance

    Forebearance Member

    Hi Grammy27!

    I hope you feel back to normal soon!

    That is reassuring to know that you have had similar symptoms when Herxing or detoxing. Thank you for telling me.

    Yes, I believe by now that the accumulating biotoxins in me are what are keeping me sick. And the way they keep the immune system activated and the cascade effects of that, as you said. YES!

    I tried taking more Vit. C and it made me sick to my stomach. I'll have to stick to my 3000 mg a day. That seems to be my limit. I'm glad you and Lisa can reap the benefits of lots of it.


  8. Forebearance

    Forebearance Member

    Hi Kelly,

    I'm sorry to hear that you're feeling crummy these days.

    That is a good point about the heart symptoms. The ache I've been feeling in the center of my torso/back could very well be my heart. Yikes.

    I haven't taken hawthorn for a couple years. I didn't need it after a while. I can't remember now, but it may have been one of those things I stopped needing when I began taking the simplified methylation supps.

    It's a good idea to back off the colloidal silver for a while. I missed a dose once and became so spacey and brain-fogged I couldn't drive. But maybe I could take smaller doses on my same schedule.

    Can you tell me more about the arteminisin? Why are you taking it? I've been reading about it lately. I was researching natural alternatives to the drug Actos, which Dr. Shoemaker prescribes for his Lyme patients. Arteminisin did part of what Actos does, and a supplement called PG/X does another part of what Actos does. Together maybe they would be equivalent.

  9. Forebearance

    Forebearance Member

    Here's the latest update from me: My Herx symptoms are easing off. I'm still taking colloidal silver at a pretty low dose. It seems like maybe I am getting rid of the toxins that have been stirred up.

    I've been waking up with non-swollen hands for a change!

    I had to get rid of a wood table that was bugging me because of the smell. The removal of something that was irritating my immune system may have helped me in general. Whew.

  10. Forebearance

    Forebearance Member

    After I started taking the colloidal silver I developed a little sore on the back of my neck. It has been there for a long time. If I forget and accidentally scratch it, it bleeds a lot. It's sort of like a boil or something. I suspect it's caused by whatever bacteria I am fighting.

  11. Slayadragon

    Slayadragon New Member

    Hi Fore,

    I've missed reading this thread for a while, it seems., I don't wash those every time I go out.

    I don't really need a coat very much in Las Cruces. Only when I'm out in the wilderness for a long period of time, and then it doesn't need to be washed, of course.

    I'd be inclined to treat my coat the way Erik said he treats his shoes---as "outside" items that are permanently contaminated. I'd have somewhere in the house to put them where I wouldn't get exposed to them when i was at home.

    I wouldn't worry about the C4a being higher. That just has to do with recent exposures to mold. Maybe you got a big hit on the day you got the test done.

    The fact that your MMP9 is lower seems a good sign.

    The odd one is the leptin. Do you have any idea from Shoemaker why that might be?

    That's good that your reaction to colloidal silver has been going down. I'll be interested to see if it does you any long-term good.

    I keep trying to decide if I should keep fighting Lyme or focus on detox. I think maybe I'll try some cholestyramine for a while, if my gall bladder and intestines can handle it.

    Though maybe I should wait until I'm no longer homeless for start, hmmm?

  12. Forebearance

    Forebearance Member

    Hi Lisa,

    Thanks for answering my coat question. I've been washing mine about once a month, and keeping it in the back hallway or coat closet, along with my shoes.

    Yeah, the Leptin seems odd to me, too. Why is it jumping up so high? Was it the effect of my parents' house? I can't remember Dr. Shoemaker writing anything that would explain it.

    My reaction to colloidal silver is going up again! lol It's always something!

    I agree that it's hard to decide what to focus on first. I guess I'm doing low levels of antibiotics (the cs) while taking soluble fiber to gradually pull out mold toxins. I'm on a break from the csm for at least February.


    Edited to add:
    I'm going to start a new thread now, called: CFS: Forebearance's thread 28[This Message was Edited on 03/09/2009]