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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Ampligen Experiences

Discussion in 'XMRV Testing, Treatment and Transmission' started by mojoey, Jul 28, 2011.

  1. ukxmrv

    ukxmrv Senior Member

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    You may need to be the one to get it there Heapsreal,

    We patients need to be as active as possible to make treatments and tests available.
     
  2. garcia

    garcia Aristocrat Extraordinaire

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    I fully agree ukxmrv. History has taught us that no one else gives a damn.
     
  3. Rooney

    Rooney

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    Am I an Ampligen candidate?

    ABS CD 8 high
    Absolute CD 4 high

    VIP Flow Cytometry Report:
    NKC4 %Tcells in blood (CD3+) 82 high
    Everything else in normal range including NKC9 (LU30) - 14 but range is 8-170

    I had low NKC in the beginning of the illness, but now 10 years in. No autoimmune signs per other labs. Any ideas? Many thanks.
     
  4. Nielk

    Nielk

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    It's a good question.
    How does one know if they will be a good responder to ampligen?
    What tests should they take to find out?
     
  5. mojoey

    mojoey Senior Member

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    My markers:

    NK cell absolute count very low (single digits)
    NK cell cytoxicity low
    Rnase L dysfunction
    chronically-low neutrophils (3.5-4)
    mildly elevated titers across the board (coxsackie, EBV, HHV-6, mycoplasma)
    low secretory IGA (single digits)
    chronic bacterial overgrowth
    elevated IL-8 (500+), other cytotkines normal

    Based on this, Peterson said I have the classic profile for ampligen candidate, but I think the "classic profile" is a bit fluid. A mix of immune overactivation and innate immune deficiency seems to be key. I have all these elevated titers but nothing in the hundreds, hence he has never mentioned vistide or valcyte to me. Similarly, I have chronic bacterial overgrowth but no one pathogen that really stands out, so he's never mentioned xixifan or other antibiotics to me like he has to other patients.
     
  6. Daffodil

    Daffodil Senior Member

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    i heard that healthy people have an LU30 of 60-80. even after a year of ARV's, mine was still only 7.5. one doctor suggested that this was due to the possible CNS co-infection i have. i hope that's what it is.

    so few people have done this test after ARV's....almost no data to go on!
     
  7. Rooney

    Rooney

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    Daffodil,

    Thanks so much about the LU30. That is really helpful since I never had a follow-up phone call with my doctor. Hate paying for those:) Maybe I'm a candidate after all.
     
  8. Daffodil

    Daffodil Senior Member

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    hi rooney. a very prominent infectious disease doctor told me that they do not yet know if NK cell function will return to normal levels with ARV's. even with ampligen, i have heard of the value jumping up, but i do not know if they actually get as high as 60-80. i have not been able to find that out from anyone. would love to ask peterson!
     
  9. mojoey

    mojoey Senior Member

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    I found the following post in a MS forum. Too bad I don't know which doctor it is:

    http://www.msdiagnosed.net/forum/vie...9ed0ebc4f62186

    I've found several references to Dr Ablashi of hhv6 foundation recommending ampligen for HHV6a (including yours from the Prohealth days, Sue). I'm guessing mainly based off that '95 study that showed ampligen stops hhv6A dead in its tracks in vitro at 100 or 200pg/ml. More interestingly, the study found that after the amp was taken away, the hhv6 came back but in less quantities than before. That might very well explain why some relapse right after the drug is taken away and others get a few good years, only to relapse again after pushing themselves.
     
  10. Rooney

    Rooney

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    I spoke with someone at the Bateman clinic today and asked about the 1/2 dose. As a phase 111 clinical trial, the optimal dose has already been established, so they start at 400 and reduce dosage as needed if there are problems.
     
  11. LaurelW

    LaurelW Senior Member

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    They start out at 200 mg., infusing over an hour, then cut the time down to 1/2 hour. After the first two weeks, they go up to 400 mg. over an hour, then down to 1/2 hour if tolerated. You can back off from 400 mg. if there are problems. You can even do 100 mg. if you have a lot of trouble, but since they are 200 mg. bottles and you can't save the leftovers, it costs the same as 200 mg.
     
  12. mojoey

    mojoey Senior Member

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    Kenny De Meirleir no longer prescribes ampligen. In his 1996, the results seemed very promising. From a '96 article:

     
  13. Nielk

    Nielk

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    Mojoe,

    If the results seemed promising, do you know why KDM dropped it?
     
  14. mojoey

    mojoey Senior Member

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    Hi nielk,

    I can think of a few possible reasons but don't want to speculate.
     
  15. mojoey

    mojoey Senior Member

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    Just to elaborate on what laurelw said, technically anything from 1-200mg will cost the same as 200mg, and anything from 201-400mg will cost the same as 400mg. This is because the drug comes in 200mg bottles and they can't reuse them. I've heard most patients tolerate (eventually) the full dose, but Dr Peterson has said the optimal dose is variable for each patient and may be as low as 25mg. Earlier studies done with 200mg seemed to show benefit as well. I'm on my phone so can't source that but i will later.
     
  16. garcia

    garcia Aristocrat Extraordinaire

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    Thanks Joey, great info as always.

    Here is a theoretical question. Could 2 people who wanted to go on the lower dose of 100mg possibly share a 200mg bottle? In other words they would both have their infusions done at the same time. Would this be feasible? That way they would be able to split the cost of the ampligen vial and only pay for the 100mg each that they use.
     
  17. mojoey

    mojoey Senior Member

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    Hi garcia,

    That's a good question and makes sense in theory. I just have a hard time seeing hemispherx actually let a doctor do this unless they were desperate for more trial participants at ANY dose. Under their current protocol, you can't go into it planning on 100mg. You have to try to go up to 400mg and see if you can tolerate it. So in order for what you described to work,. two patients would have to try going up to 400mg and then find that 100mg is their optimal dose before they can even ask about this arrangement. So again, the circumstances which would allow you to even begin to ask for this are maybe possible but can't be premeditated.
     
  18. LaurelW

    LaurelW Senior Member

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    I think this would be difficult to do, because you can't move the drug out of the bottle it comes in until it's infused, so you would have to eyeball how much you think is half the bottle. Would be cool if you could, though. Somebody should ask Hemispherx.
     
  19. grant107

    grant107 Jean

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    Daffodil, is Ampligen approved and on the market in Canada.
     
  20. Daffodil

    Daffodil Senior Member

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    its been available in canada since May, 1996 on a cost-recovery basis (meaning you have to pay for the drug). i believe you doctor has to fill out some paperwork..it's probably available through some special access program. i dont think you can say its "on the market".

    i have heard of only 1 patient receiving it - an HIV patient from NYC, who travelled to see Dr. Guy Dore in Montreal (i emailed this doctor once and got the impression he no longer uses it)

    in all these years, I have not been able to find any doctor who will prescribe it for me...and i have seen many.

    your best bet may be to call hemispherex and see if they can provide you with a name of someone in canada who may be prescribing it. if you do find someone, please let me know!

    thanks
     

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