attn pianowoman

Discussion in 'Fibromyalgia Main Forum' started by deliarose, Oct 9, 2006.

  1. deliarose

    deliarose New Member

    hey Kathy

    I've just been readnig a couple of yr posts, and I wanted to pick your brains about your infrared sauna.

    How did you make it? Wot did u use as a guide?

    And can you tell me how soon you felt functional on the TFs?

    Tnx
    Delia
  2. deliarose

    deliarose New Member

  3. Pianowoman

    Pianowoman New Member

    The infrared sauna that I used was at my doctor's office. It was a Saunaray which I think is a Canadian company. Several of the patients there have bought their own and from what I understand, they are very easy to set up. They just snap together.

    I slowly increased my time under the direction of the doctor and besides drinking lots of water, she had me take some electrolyte salts to replace what I had lost. I think I have mentioned before the book Detoxify or Die by Sherry Rogers. It really is very good.

    Re the transfer factor, I took the Immune Transfer C for 3 months and I pulse them about every 4-6 weeks. It took probably 2-3 weeks before I could tolerate a whole capsule. It's a little hard to remember exactly. I certainly was functional during that time but my symptoms did increase. By the 3 months, I felt somewhat better and have continued to improve. I do not feel that I am finished with the TF. I would like to take the 560 sometime soon since I have HHV-6 and have not yet covered the A strain.

    I hope that helps
    Kathy
  4. deliarose

    deliarose New Member

    Your TF protocol is v. different from mine though.
    My doc has me on 2 a day of Immune Care 64.. He said I shld see a real improvement in 6 monhts.

    I kind of hoped that this wld take care of my CFS...wot's your sense?

    tnx
    Delia
  5. Pianowoman

    Pianowoman New Member

    I think it would be hard to say that treating the infections would 'take care of' the CFS. If this were the answer, we would all know about it. I think it helps if one can treat the bugs that are invading our bodies. We often seem to have different viruses or bacteria.

    This is a multi-faceted disease, in my opinion. It is neuro-endocrine-immune and they all have to be addressed. If, indeed, we have a gene mutation, then that really makes it more complicated.

    All we can do, I think,is to keep peeling off the layers. We treat as much as we can and we can make ourselves quite a bit better in many cases. It's a hard road, though, with a lot of ruts in it!!

    Good luck with the TF. I hope it is an answer for you.
    Kathy
  6. deliarose

    deliarose New Member

    I just hope I don't have bacterial infections on top of the viral ones.

    But Nicolson says u acquire a new infection for every 7 years you've been ill... sounds a bit arbitrary.. but as mikie says .. we're a bit like walking petri dishes for illnesses.

    anyone..all one can do is keep working on it..

    you seem to have found a decent doc which is half the battle.

    I'm interested in yr protocol. B12, saunas, chlorella and TFs..Klonopin

    Is there anything else u wld recommend?

    cheers
    delia
  7. Pianowoman

    Pianowoman New Member

    My Naturopath who works closely with my CFS Doc. is very keen on probiotics, Fish Oil, and of course, diet changes. She will change my supplements every once in a while. Actually, the last time, she put me on a green drink It helps alkalanize the body. I've had problems with my reflux for a few weeks and went off the green drink but I'll be starting it again.

    I don't think any of these treatments are going to work quickly. Everything seems very slow. However, if I think about how I was 1 or 2 years ago, I can see a difference. They keep reminding me about how long it took me to get this way!!

    I'll let you know about the results of the mercury and heavy metal testing when I get them back.
    Hang in there!
    Kathy
  8. deliarose

    deliarose New Member

    i'm taking a green food supplement.. is that wot u mean by green drink?

    I use Perfect Food by Garden of Life.

    Wot probiotics does yr ND recommend? I've used Threelac and Primal Defense.

    Currently using PB8 .. not so sure about this one.. but it's almost impossible to tell which supps are working.. or what their effect is.

    I too have made progress.. but I am still extremely unproductive.. even on a domestic around-the-house level.

    V. frustrating. Ahh well. Brewer said it would take 6 months to see progress on the TFs.

    One thing: have u considered taking hormones?
    Some people seem to do well on them.

    I have held off until now, hoping that if I address the underlying causes, the hormones will fix themselves.

    I'm thinking of Elsa, spiritsky, Lisa Petrison... and some other FFCers.

    TC
    Delia
  9. Pianowoman

    Pianowoman New Member

    I hear you about the progress being slow and the difficulty in knowing which supps are working. I think it does take months but we have been sick so long we want fast!!

    My ND likes Jarodophilus and Culturelle. She also says that PD is OK. I think she find them a difficult company to deal with but they have a good product. Re the green drink, yes, I mean a green food supplement. I'm taking Greens Plus.

    Thanks for the tip about the hormones. I have been thinking about that actually. I'll put it on the list!

    Cheers
    Kathy
  10. deliarose

    deliarose New Member

    sometimes it's difficult to recognise the progress one is making....esp. since the temptation is to compare yourself to one's pre-CFS state of health instead of one's lowest point.

    I am definitely making progress. I just hope it's sustainable.

    Ref probiotics.. I have seen it said several times now that CFSers need mega doses. I think Teitelbaum said to take it 6 times a day. (but u shld check that)

    According to another poster's doc, we need 10 billion IUs or whatever the measurement is.

    And yet another expert says it must contain FOS. (Primal defense does.)

    I was interested to read you had tried several ways of detoxing. Does that mean you tried DMSA or whatever in addition to chlorella?

    What has worked best for u?

    Tnx
    Delia
  11. Pianowoman

    Pianowoman New Member

    ...point about the probiotics. I'll have to ask about taking more.
    Re the mercury detox, I did have the IV DMPS for a while but didn't tolerate it very well so the doctor said I should stop it. Besides the Chlorelle, I took AMD, a Canadian product which I think is similar to the Methionine Detox Complex that Pro Health sells. I also used the far infrared sauna , under the supervision of my ND. From what I understand from others, the DMSA is used to help get the mercury out of the brain but it can't be used until your levels are quite low. I'll see next week when I see the Doc. I hope the results are back.
    I'll keep you posted.

    Kathy

  12. deliarose

    deliarose New Member

    yes, u did mention earlier that you had problems with the DM blah.blah....

    keep us posted on yr progress.

    cheers
    delia