CFS: Forebearance's thread 81 & 82

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Nov 15, 2013.

  1. Forebearance

    Forebearance Member

    Hi everyone,

    Well, the nerve pain in my arms has almost completely gone. It seems to be related to toxins and I'm guessing that maybe it depends on how fast I'm killing critters and how fast I'm removing the toxins from my body.

    I cut back on the frequency of my Virastop and Candidase, but then when I wen too long without taking them (like 5 days), the nerve pain would come back again. So too much is bad and too little is bad. The ideal dose seems to be something like once every 3 or 4 days. I'm figuring it out.

    I'm up to two capsules of Raw B complex from Garden of Life, and I seem to be feeling a little bit more energy, very gradually, along with very gradually getting thinner. It's probably related to thyroid function, I would guess.

    But as I increased my thyroid function I had to increase my calcium and magnesium again. They are back to the max levels I can handle taking. So now I can't increase my Armour thyroid any more or I won't sleep. Trying to explain this to my doctor is going to be hard. She wants me to take more thyroid, because my TSH is still high. But I have to keep everything in balance.

    Other than that I'm mostly just hanging in there. I haven't tried the acetyl glutathione yet or the Chem Defense. I haven't had a quiet time with no variables when it would be good to add a new thing. Hopefully things will calm down in December.

  2. mbofov

    mbofov Active Member

    Hi Forebearance - good to hear from you. It sounds like you're doing better, although you are juggling so many things, different issues than I have. What a balancing act you have to do!

    I've been pretty diligent about the mercury detox for several weeks, but just could not make myself do another round on Sunday. I'm supposed to take the supps every 3 hours and I just couldn't do it this last Sunday so am taking 2 weeks off. Overall I'm tolerating it much better than before and keep increasing the dose.

    I've also started taking PQQ (pyrroloquinoline quinone) (Ian has suggested this several times). I resisted because it's more money, more pills, but finally gave in, bought a bottle of Swanson brand, a month's supply for $20 so not too bad, just on top of everything else. Anyways, it seemed to give me a mild headache for several days, also extra fatigue and a rash near my neck, which all can be signs of detoxing. Then today the headache is just about gone (don't notice it unless I look for it) and my energy picked up. The rash is disappearing too. So will see how it goes - it's supposed to help produce more mitochondria.

    Take care -

  3. Forebearance

    Forebearance Member

    Hey that's great, Mary!
    Do you know about Dr. Yasko's recommendation to take molybdenum when detoxing? It prevents detox headaches, which can be caused by an issue with sulphur (I can't remember exactly what the issue is).

    I love my Angstrom Minerals molybdenum and take it every day. I hear you about taking so many supplements. It's a lot of work. I'm glad you could take a break from the mercury detox.

  4. mbofov

    mbofov Active Member

    Hi Fore - I do know about molybdenum for detoxing. I used to take a separate molybdenum supplement but have been using something called Chem Defense by Source Naturals for several months now. It's a sublingual tablet which has 1.7 mg. riboflavin, 120 mcg. molybdenum and 50 mg. reduced glutathione. It's reasonably priced too.

    What's interesting is that I tried taking Chem Defense 3 or 4 (or 5? can't remember) years ago, and I couldn't tolerate it - it made me detox, feel like crap. And now nothing. I am tolerating so many things that used to make me feel horrible. So my body is working better, which is why I think I'm able to tolerate the mercury detox much better now too. I don't really know why - it's happened gradually over the last couple of years. But it's nice! I think it might be related to the folate I've been taking for 2-1/2 years now, I couldn't say how or why it relates to detoxing but my body just started working better after that.

    Good luck with everything!

  5. mlcc2

    mlcc2 Member

    I'm new to the forum but not new to mold illness. I've been ill for years now. I saw your postings and that's what made me join. I've read Shoemaker's book Surviving Mold and am currently seeing a doctor for the exposure. Shoemaker determined after blood work that I have the second worst HLA haplotype for being around mold. For years doctor's thought I was crazy but after having a really high C4a at over 70,000 and a ERMI testing that was positive I no longer look like a fool. I'm currently using Prevalite for detox twice a day. I also recently had a nasal swab culture that returned positive results for negative staph-coag and claudosporium species which has my new doctor completely baffled. If I remember correctly, don't the nasal swab results need to be addressed before any forms of detox treatment? What else do you or did you use that has helped clear out the mold and how are you feeling these days?
    Last edited: Nov 29, 2013
  6. joanierav

    joanierav Member

    hi micc2. pleased to meet you. this is a great site , you will learn a lot here and nice ppl too.

    your post got my attention not because of the mold illness, but your mention of staph-coag . i have had two nasal cultures this year from e.n.t. doctor. the first one came back severe mrsa. thankfully the report stated the drugs to use that would kill it. and i took the drugs for several wks. but when i went back for follow up visit one month later, and she retested me that report came back coagulase negative staphylococcus species. result 1. also acinetobactor 1 woffii, result 2.

    now my primary is perplexed also. and the e.n.t. doesnt seem very concerned about it. altho she did treat me with different meds for the 2nd nasal report. the only one concerned is my pulmonary. and he is very concerned. says i should be on iv meds with a pic line. but he says he cant do it, cause he is a pulmonary. i should talk with my e.n.t. and im sure she wouldnt order it. just a feeling i have about her.

    ive been sick with terrible sinuses infections, asthma and reflux for one yr. constantly, even hospitalized.

    micc2, i hope you see this and can shed some of your knowledge if you have any about my test results.
    also anyone that might know anything about these nasal scopes would appreciate you joining in.

    many thanks for listening. joanierav
  7. mlcc2

    mlcc2 Member

    MRSA I'm told is usually from being in a hospital setting which I have been in a few times unfortunately and it appears to sometimes come from homes with mold/fungus. I've only been given vague ways to get rid of it which are by using nasal sprays not antibiotics. My primary says not to worry about it, but I don't believe him. He also claims it's the new "superbug" which you would think would make him think differently on the subject. From what I read online it can spread over time in the body along with the fact that it's contagious and it remains on bedding, curtains in the bedroom, etc so frequent needs of washing everything in hot water is a good idea. I'm in process of finding a specialized doctor that might have knowledge to help treat me for it as I strongly feel this is what's making me sick too along with the inability to walk much at the age of 41. Maybe someone else on the forum can shed more light on the subject in the interim possibly?
  8. mlcc2

    mlcc2 Member


    Did a little research. Your acinetobactor and woffii are more than likely mold related. Woffii is actually lwoffii. If I were you, I would have your house ERMI tested through Mycometrics for water intrusion. They will send you a dust sampling kit and you do the sampling and mail it back to them. You can do a 5 mold test or a complete analysis. It's well worth the money too. Do you have any visible mold or water leaks in your roof? Under your carpets? Damp basement? Mine was behind a wall from an upstairs shower pan leaking onto a wall for several years. I would really look at this quickly along with Ritchie Shoemaker's stuff on mold. This is something you don't want to delay or mess around with either, trust me.
  9. joanierav

    joanierav Member

    thanks so much for your input. i dont have a basement , i have a little 5 rm ranch on a slab. i got a new roof, 8, yrs ago, because i had a leak that dripped down into the garage . so i called an envirormentalist cause i was afraid of mold, and he took the whole garage wall down (where the leak was) and put the new wall up according to mold free regulations. i am very aware of mold. i know all about the black kind (stacki backi misspelled) the poisonous one. but i didnt know about the ERMI test. thank you very much for that info. i am surely going to look into it. i do smell mildew in one side of the house , in the summer only when we get a lot of rain. but i dont see any leaks etc. but will think about looking under the carpets on the side of the house where i smell the mildew. very much appreciate your quick reply. joanierav
  10. Forebearance

    Forebearance Member

    Welcome to the forum, mlcc2!
    Have you been diagnosed with ME/CFS or fibromyalgia?
    You probably know from reading my old posts that I think having one of these illnesses messes up the immune system in a way that makes us more susceptible to toxins. And my weakness is for mold toxins, but any susceptibility to toxins a person has from genetics or past history can be made a lot worse by CFS. If you don't have CFS or fibro, Dr. Shoemaker's protocol seems to have a much better chance of curing you, according to anecdotal reports I've heard.

    That is a really high C4a. You poor kid!!
    Ooo, I've never heard of Prevalite before. I'd love to hear about it.
    That's too bad about your nasal critters, but I guess those are very common. Yes, I think Dr. Shoemaker thinks it's very important to address those. That is one of the early steps of his protocol, isn't it? I haven't had the special kind of nasal swab he likes people to do, but I have assumed I probably have some nasal bacteria and have been spraying colloidal silver up my nose for years now. I hope it is helping. I think it is.

    I also spray XClear up my nose. Fun times. It is kind of soothing, though. Good for the sinuses.
    I've tried a lot of things for detox, and soluble fiber agrees with me the best. I need something very gentle, apparently. Also a new vitamin called Garden of Life Raw B Complex has taken the place of methylation supplements for me, so it helps with detoxing.

    I've been very gradually feeling better. I don't notice it from day to day, but when I compare my stamina from year to year, I can see a difference. It's nice to be getting a little something from the mold avoidance lifestyle, since it is very difficult and expensive. Right now I'm working on thyroid issues, which not everyone has. But it's another inherent vulnerability in me that was exploited by the CFS.

  11. Forebearance

    Forebearance Member

    Hi joanierav,

    I'm really sorry to hear about your issues! They sound very difficult to deal with.
    It's so nice you found mlcc2 to compare notes with. Even if people with ME/CFS or fibro don't have mold illness, it's amazing how many challenges we have in common. It would really probably help us to compare with each other. And yeah, I admit I'm worried about your house. There are many kinds of mold that make toxins. And some kinds of bacteria, too.

    I did an ERMI test on my parents' house once. This was after I had moved out of my mold-stricken apartment and was basically homeless. I wanted to see how bad their house was with a view to staying there for a while. My mom and I got the giggles, because of a line in the ERMI instructions that said "First, locate the floor."

  12. Forebearance

    Forebearance Member

    OH yeah, mlcc2, I have also been taking something called Flor Essece detox tea, and I like it a lot!
    It is gentle but it actually does something. I have been having the best luck by taking a standard dose once a week or so, instead of taking a small dose every day.
  13. joanierav

    joanierav Member

    hi fore. thanks so much for responding. hey , we are thankful to take the improvements even if it is yearly.

    i called the ermi ppl a few days ago, and she said she would recommend the environmentalist to come over and test with "agar plates" she said they show what kind of bacteria. the other , does not test for bacteria , just the mold. but he will do both . i guess she recommended this because of the acinetobactor that i have. she said she would have the environmentalist call to make an appt.

    i will keep you both posted. i cant believe after being sick all these yrs. that only now i am thinking "mold". but i dont want to get down on myself, because i have so many other things that im constantly working on.

    "first locate the floor" lol.

    blessings, joanierav
  14. Forebearance

    Forebearance Member

    Best wishes with your test, joanierav!
    Hey, I didn't think of mold until I had been sick for 18 years. We have a lot of things to worry about.