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EPO for CFS

Discussion in 'General Treatment' started by undcvr, Feb 8, 2014.

  1. undcvr

    undcvr Senior Member

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    Does anybody know of a doctor that would rx EPO erythropoietin for CFS if our numbers were all just on the low side but not necessarily deficient ?
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    this would be cheaper but anabolic steroids increase red blood cells counts, thus improving the amount of oxygen one can carry. Substances like deca durabolin are well know for this all well as increasing nitrogen retention which helps muscles repair quicker, also suppose to help people with painful injuries to heal like injured shoulders, knees and backs.

    Or have say a certain amout of blood drawn out and frozen, several weeks later your blood count will be back to normal and then infuse the blood drawn earlier, thus giving u the same effects. Thats the gist of how many cyclists and other athletes do it.
     
  3. undcvr

    undcvr Senior Member

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    @heapsreal - i want to keep this thread and delete the other - nah steroids have their own bunch of problems but I still do think that red blood cells here are the key not so much the white.

    Does anyone know of an advocate that can speak to my doctor ?

    What kind of facility here wud freeze blood anyway ?
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    @heapsreal isn't that like blood doping?
     
  5. undcvr

    undcvr Senior Member

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    deca wud seem easier to get than epo no ?
     
    Last edited: Feb 8, 2014
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Yes what many athletes do, most under a docs guidance. Differences Is they do it for fame and money we would do it for health and a life. Many of these drugs and techniques athletes use were originally designed for sick people such as anemia, renal failure etc etc. The dosages between using them for health vs a gold medal is very different too.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    ??? Epo my mother was on before she passed away. She had renal failure which caused anemia and why she was on it. Maybe look up the indications for epo as it may be able to be prescribed to you??
     
  8. minkeygirl

    minkeygirl But I Look So Good.

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    I beg to differ but I don't think Lance Armstrong (I think he did this) was under a docs supervision. I'm just saying.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maybe, top athletes all have their own docs and sporting teams have their team doctors. I think these docs do more then strap ankles etc and its wide spread more than most realise too.

    I think we could probably benefit from some of these things. Interesting if they researched more of this. Things like blood doping and epo would probably helps people with pots/oi. A few studies showing anabolic steriods improving immune function in hiv, doses werent bodybuilding doses though. I also wonder in anabolic steroids would help us recover from activities better and avoid pem.

    These are all thoughts I have had as well as what I have researched. Most of these things are quite safe if used properly by a doctor, probably alot safer than things like rituximab??
     
  10. minkeygirl

    minkeygirl But I Look So Good.

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    At this point, many of us are willing to try anything if we could get our hands on it. There really is nothing to lose IMO.
     
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Getting It is the problem and a good doc to monitor us.
     
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  12. minkeygirl

    minkeygirl But I Look So Good.

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    We could probably get it, you can get anything if you are willing to pay. My primary doc wouldn't RX acyclovir but she was monitoring me. But she doesn't believe in the viral part of ME or the immune stuff so she won't run odd labs we need.

    Hopefully the immunologist I'm going to see will get on board with things. Or maybe even the rheumy who sent me to the immunologist.

    It shouldn't be this hard.
     
  13. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    EPO is very expensive.

    It is used, for example, for anemia in kidney failure and cancer chemotherapy patients.

    Pretty sure the anemia would have to be significant before a doc would be willing to prescribe that. The manufacturer website says:
    http://www.procrit.com/

    Of course we have to use something and everything has risks. We do need to be aware of what the risks are.
     
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  14. undcvr

    undcvr Senior Member

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    from what I understand pple with cfs who use it to recover, the dose they need is very low usually the lowest dose. Also they take a simple blood thinner to get past those effects. It's not an issue.
     
  15. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    that's cool; I'm glad there's a protocol. :)

    blood thinners are not so safe, either (ETA: o aspirin, that would certainly be better than warfarin), but I think our disease is severe enough that many of us will need to use some kind of "unsafe" medicine or other treatment. I just think we should represent it as a benefit:risk decision, not as simple and safe. Many of us will be ok with most of these drugs, but a very few will have bad effect.

    Of course doing nothing can cause a bad effect, too, and that could be the most likely bad effect we will have.
     
    Last edited: Feb 8, 2014
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    there is a difference between the doses taken to improve ones health vs improve ones performance for some pro sport.
     
  17. undcvr

    undcvr Senior Member

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    oh yea alot especially the loading phase: I've read that all cfs pple need is 2000IU 1-3/week

    EPO Dosage and Usage

    Weekly dosage varies 50-300 IU per kilogram of body weight. By this guideline a 176 lb (80 kgs) athlete would take a maximum of 4000 U per injection. This would be done in the days/weeks prior to a competition, the peak effect hopefully reached near the day of the event. Sportsmen starts feeling results after two weeks of usage (hematocrit level increases 3-4%). Most of specialists agree that one should not use erythropoietin for more than six weeks!

    We find it optimal to use following schedule: Loading phase 4500-12000 IU for week 1-3 (6000 IU in average), then keep supportive dosage 3000-4000 IU for weeks 4-6. Weekly dosage is to be split on three equal shots.

    Also one can use this formula: 20-30 IU per kg for every shot (three shots a week). Conservative approach is 4500 IU / week (3 shots x 1500 IU) with 3000 IU supportive dosage (3 shots x 1000 IU).The higher dosage is - the more effect and more risks you gain. Anyway, it depends on the personal characteristics, base levels, target goals desired. Blood tests recommended if you're toying with higher doses.

    Take one tab of aspirin two times a day after meal or along with milk to prevent stomach damages (milk neutralizes aspirin acids). Aspirin will decrease blood viscosity thus decreasing risks of thrombosis which could be fatal during the long race due to sweating and extreme dehydration.

    In general, greater dosages of rhEPO induce a quicker response of increased erythropoiesis than lower dosages, however, they are more likely to be detectable by doping tests. If athlete is not in a rush, it's better to make three shots a week - peak form will be achieved anyway.
     

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