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calcium channel problem and gcmaf

Discussion in 'GcMAF' started by janey, Jul 12, 2011.

  1. janey

    janey

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    Melbourne, Australia
    I'd like to start a thread about calcium channel problems caused by GcMAF.

    I heard today that KDM is saying that this problem leads to vasodilation, which causes symptoms such as headaches and sleep disturbances. KDM is apparently treating this with a calcium channel blocker called Nimotop, which affects only the calcium channels in the central nervous system. (Other calcium channel blockers affect the peripheral nervous system as well, causing blood pressure to drop.)

    Can anyone explain exactly how GcMAF causes this calcium channel problem? It seems that some people are affected by it, but others are not. Does this make sense? Does anyone know of a way to test for this? I heard that checking calcium in the blood does not provide this information. Finally, is anyone taking Nimotop? Is it helping with any of the GcMAF side-effects?
     
  2. Leonora

    Leonora

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    Hi Janey
    I have gotten open calcium channels due to Gcmaf. It started with insomnia which got very severe, and after a while I got a lot of neurological symptoms - peripheral ones as well as CNS symptoms (nausea, light sensitivity, constant tingling/stinging sensations, tremor, spasms, muscle weakness etc - totally bed ridden in the end).
    I don't know the exact mechanics around why they open, maybe due to the inflammation that Gcmaf causes, but I know if you have a lot of abberant prions (low PrPc functioning assay) it's difficult to get these calcium channels closed. When KDM figured out that I had open calcium channels he put me on Nimotop which only works in the brain. It did not do much for me - actually a few weeks later the tremor and cramps just got worse. He then put me on Nifedipine which made the symptoms even worse. I have now been on IV magnesium 2/week for 4 months and it is gradually starting to help. On the days I don't get IV, I take as much as 2400 mg of Mg. This can contribute to closing the calcium channels, but for me I still got a long way to go... You can't check this with a blood test. I honesty don't know exactly how KDM arrives at the conclusion that some have open channels. There is little clinical knowledge on this. I know of another patient that got a lot of the same symptoms from Gcmaf as I did (this patient also have a low prpc), but according to KDM he did not have open calcium channels....so to be honest I don't know exactly how he thinks.... If anyone knows, I would be happy to know :)
     
  3. Jenny

    Jenny Senior Member

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    I don't understand the logic here, janey. Nimotop is a vasodilator, so why use it to treat vasodilation?

    http://www.druglib.com/druginfo/nimotop/

    I took this when I had a subarachnoid haemorrhage and it helped my ME symptoms considerably.

    Jenny
     
  4. Leonora

    Leonora

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    Nimotop is a calcium channel antagonist - that's why one can try to use it to close opened calcium channels...
     
  5. markmc20001

    markmc20001 Guest

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    what happens if ones calcium channels are open? Does one loose calcium? Unable to get calicum in to cells? unable to get it out of cells?
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Janey,

    Leonora has more experience about this, but KDM did mention this possibility on my first visit when he went through my cardiac tests (lots of them!). So possibly he gets some clues from these.

    Do you know the results of your PrPc test? If they are very low, this seems to make this problem more difficult to solve. I was also told to take high doses of magnesium, though I don't know for sure if I have calcium channel problems.

    Best wishes,
    Sushi
     
  7. alex3619

    alex3619 Senior Member

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    Hi markmc20001, I am not very knowledgeable about calcium channels, but they don't just let calcium in and out, they trigger enzymes, hormones etc. Calcium is a subcellular hormone - if ionized (Ca++) its called a intracellular second messenger. Bye, Alex
     
  8. janey

    janey

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    Melbourne, Australia
    Leonora thanks for your reply. Im really sorry that GcMAF has been so rough on you and that the calcium channel blockers made it even worse. I hope the magnesium continues to help you recover. Perhaps those with suspected open calcium channels should try magnesium before trying nimotop (or other calcium channel blockers)?

    Jenny youre right, nimotop is a vasodilator (as well as being a calcium channel blocker or antagonist). I may have been mistaken that open calcium channel causes vasodilation.

    Sushi I havent had the PrPc test done. But I have been taking Nexavir for almost 3 years, and I read somewhere on this forum that Nexavir helps with the aberrant prions. Have you been taking magnesium and if so, do you think it has helped you to tolerate GcMAF?

    Janey
     
  9. CindyWillis

    CindyWillis Senior Member

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    Just wondering where you are getting your Magnesium shots from. The wellness pharmacy ran out of Magnesium sulfate. Do you have a pharmacy that compounds it for you? Thanks for letting me know.

     
  10. Leonora

    Leonora

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    Hi CindyWillis

    I get it IV from a clinic close to where I live, so I don't actually purchase it myself from the pharmacy. I don't live in the States (I assume that's where you're from), so unfortunately I don't have any advice on where you can get it.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Janey,

    Sorry I missed you on chat last night (did you see my chat?)

    Next time you see Dr. Lewis or KDM, you might want to ask about the PrPc test to see what you status is. It is an important test. Yes, Nexavir is supposed to help with aberrant prions.

    I do take high doses of magnesium orally. I don't have any idea whether it helps me to tolerate GcMAF because I was taking it long before I started. KDM did tell me to continue. Magnesium seems to help most of us--whether we are on GcMAF or not.

    Best wishes,
    Sushi
     
  12. girlinthesnow

    girlinthesnow Senior Member

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    Janey, I've been on Nimotop for about 3 months as prescribed by KDM. It seemed to help me at first and then after the first month or so I wasn't sure that it was having any effect. I mentioned this to him when I saw him in June and he took it out of my protocol. At the same time he had my blood pressure tested, it's always low. When I stopped taking Nimotop pain symptoms came back with a vengeance. I've started taking it again but am still in lots of pain.

    I don't understand calcium channels but do know that this drug was used by Dr Goldstein who said it had remarkable success in about 40% of patients 'who experience relaxation, increased energy, decrease in tender point sensitivity, improved exercise tolerance and enhanced mental clarity' ( fr Betrayal by the Brain, 1996, Haworth Medical Press).
     
  13. janey

    janey

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    Melbourne, Australia
    Girlinthesnow, thanks for sharing your experience. May I ask what dose Nimotop KDM has prescribed for you? Also, was it affordable? Over here it's really expensive. That's interesting that Dr Goldstein had success with it. I'd never heard of it being used for CFS before.
     
  14. girlinthesnow

    girlinthesnow Senior Member

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    Hi Janey, I'm on 30mg 2x/day. It's not expensive in Europe, costs about 10 for 30 tablets or about $16 US equivalent.

    I'm sure it's helping me but the blood pressure issue remains.
     
  15. janey

    janey

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    Melbourne, Australia
    Girlinthesnow, thanks for that info. I may have to find a way to get it from England/Europe. After the awful week of insomnia that I've had I'm thinking that this may be a way to help me keep going with the GcMAF.

    I'm a bit concerned about the blood pressure issue too. I've been on florinef to raise my blood pressure for many years now, but before I started GcMAF I reduced the dose and am now only on 1/4 dose. Have you ever tried florinef (fludrocortisone)?
     
  16. girlinthesnow

    girlinthesnow Senior Member

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    Nope, never taken anything for low bp but I do add alot of salt and take high dose magnesium citrate (1200 mg)/day. My bp can dip to 75/35 but is generally around 80/40, I cope by staying horizontal as much as possible and getting up slowly or else I black out.

    Taking small amounts of pure glucose, not any other type of sugar, helps with lessening my OI symptoms, I don't know why.
     
  17. Leonora

    Leonora

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    Dear Janey. I think your body is trying to tell you to have a break from Gcmaf. It sounds that you are overstimulating the macrophages and in the worst case you might relapse.. I would lower the dose, have longer intervals or even a break for a month or two. This is how I relapsed from Gcmaf, and it started with severe insomnia... Not to make you worry, but it's a lot better if you give your body a break now...
     
  18. janey

    janey

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    Leonora, thanks for your concern and your advice. I think you're absolutely right that I have to either reduce the dose or increase the intervals between gcmaf injections. There is no way that I could keep on going without much sleep. I skipped the last injection to allow my body to recover and thankfully things have improved and I'm sleeping again. In case you haven't seen it, I sent you a private message a few days ago (click on Private Messages at the top of the page and it will take you to your Inbox).
     

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