Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Are there any success stories?

Discussion in 'General ME/CFS Discussion' started by andrie, Feb 23, 2015.

  1. andrie

    andrie

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    From people with severe ME? I.e. where it has gotten to the point where they have trouble reading and writing?

    It's just getting very hard to believe that I can recover from this to be honest

    Thanks
     
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  2. Esther12

    Esther12 Senior Member

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    Yes there are. I think that paying too much attention to them can lead to people wasting time and effort on ineffective treatments/remedies/diets though. To me it seems fair to say that you may recover, but we don't know how or why, and a lot of people do not.

    Sorry for not having more helpful information for you, and I hope that things do start to improve for you soon.

    Additionally, maybe there are some signs that research in this area is getting a bit less terrible. If that is the case, then there may be an increasing chance for real improvements in understanding and treatment in the future.
     
  3. lansbergen

    lansbergen Senior Member

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    Mine was very bad. Much better now but still not as good as it was before I fell ill.
     
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  4. deleder2k

    deleder2k Senior Member

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    I know there are some. There are also several stories now where severely sick patients have recovered completely with Rituximab (4-5+ years in remission).
     
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  5. helen1

    helen1 Senior Member

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    Yes there are people doing remarkably better from very disabled states.
    These PR members have indicated they've improved a lot and several have said they've recovered:

    Idie, Stridor, HowIRecovered, freddd, greenshots, Red04's wife, Martial, Skyline, Caledonia, slayadragon, Catseye, Ken Lassassen (has a long article on Health Rising), asklipia and husband, sempre_bc, John Chia's son and I think serg1942 is in med school and doing well last I heard.
     
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  6. worldbackwards

    worldbackwards A unique snowflake

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    I've been there. I'm still not well, but I can read and write with reasonable ease and I'm still getting better.

    It's hard when you're that ill to find treatments and get about to places, with the huge toll it can exact, but if you're not recovering, it's worth trying stuff. I won't get into what's helped me unless you want me to, because I'm well aware it is probably of no relevance, but I've found a way back to a way of life that, if not well, is certainly bearable and quite enjoyable, if I'm not feeling too mardy about it.

    In short, yes.
     
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  7. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    It has also caused the death of close to 200 patients...

    Rituxan (Rituximab) - Side Effect Reports to FDA
     
  8. daisybell

    daisybell Senior Member

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    Just because the deaths of nearly 200 people who had been on Rituximab have been reported to the FDA does not mean the drug caused it. They would all have been severely ill, probably most with cancer....
     
  9. DanME

    DanME Senior Member

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    This is a ridiculous statement. First of all, RTX probably saved tens of thousands of lives used in cancer treatment and improved the quality of life in endless cases of Rheumatoid Arthrites. For a kind of chemotherapy it is remarkably safe and severe side effects are very rarely seen. Of course, it is not without dangers, like any other strong drug, which interferes with the body so heavily. bad stuff can happen (like a reactivation of the JC virus or Hep C). But as I said, very rarely. Older chemo therapies are much more dangerous, but we use them nevertheless. Why? Because the benefits outweigh the potential risks by far. Even aspirin has potential risks (yes, even severe ones), but it is sold without prescription. The way you put it, let it look like, RTX likely kills people. But it doesn't. It was tested for safety and got through as a very reliable drug. That's why we conduct studies. And as far as we can see, it seems also be safe for ME.
     
  10. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    More than half of the deaths are listed as being a "reaction" to the drug.
     
  11. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    Yeah, it makes sense for a potentially fatal condition such as cancer, where the targeted patients are most likely already in the process of dying. I wouldn't be willing to take that sort of risk for a condition such as ME/CFS.
     
  12. DanME

    DanME Senior Member

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    You didn't get my point. The risk isn't high! RTX is one of the safer drugs out there. It's not like every third person dies from RTX. Why do you think, they give RTX to RA patients?? They are not dying, but have a poor quality of life.

    ME/CFS is even more disabling than RA. Probably one of the most disabling diseases there is. So it would be wise to do anything one can to improve the life of the patients.

    It makes absolutely no sense to demonise RTX.

    PS: Sorry for derailing the thread. Maybe we should move the discussion.
     
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  13. SOC

    SOC

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    I was bedbound and unable to read. Now I am working full-time at a not-physically-demanding job. I'd say I'm a 7/8 on the Phoenix Rising activity scale. I can work full-time with some difficulty and not do much else without risking PEM. I do seem to be continuing to improve slowly, though.
     
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  14. ahmo

    ahmo Senior Member

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    I've had huge improvements. Initially from eliminating gluten/dairy, my nervous system calmed within days. Longer term by implementing Freddd's Protocol. At a certain point I no longer had neurological symptoms, no more life-long insomnia. Eventually low dose naltrexone greatly increased my stamina, seemingly by decreasing an ongoing level of inflammation. And most recently, addressing oxidative stress with Martin Pall's suggestions regarding nitric oxide (NO/ONOO-) http://thetenthparadigm.org/

    I'm not "cured". But my functioning, resilience, and appreciation of life have been transformed. It's not quick, I've been taking these steps for 3 years. But worth everything.
     
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  15. alice111

    alice111 Senior Member

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    Do you mind sharing what got you out of the bad bad?
     
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  16. lansbergen

    lansbergen Senior Member

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    The immune modulator and trying not to overdo.
     
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  17. redaxe

    redaxe Senior Member

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    Hi.

    If you haven't already maybe this article by Cort Johnson is worth taking a look at.

    http://phoenixrising.me/interviews-...ntiviral-treatment-study-0510-by-cort-johnson

    Just quoting a paragraph from the article below

    Findings: the paper presents some startling findings

    1. Long term antiviral therapy was effective – very effective – in many of his patients. Many of them, while not completely cured, are able to work and lead normal lives again – an astounding finding in this field. Some are completely cured.
    2. About 25% did not respond- a finding that may be related to the limited duration of their treatment.
    3. While Dr. Lerner’s protocol can and often does work for longer duration patients – duration of illness does make a difference in treatment response
    4. About 30% of his patients had, in addition to herpesvirus infection, another related infections such as Lyme disease, Babesia or Streptococcyus. The fact that these patients improved but not to the extent of herpesvirus only patients has profound implications for how to treat both ME/CFS and Lyme disease and other infected patients.

    There is more information about HHV6 (which isn't really mentioned here) at the HHV6 foundation and successful trials using the antiviral drug Valcyte which strangely isn't mentioned in Cort's article.
    http://hhv-6foundation.org/associated-conditions/hhv-6-and-chronic-fatigue-syndrome


    For myself I will be trying to start Valycte in 2 weeks. I found recently found I have a high IgG to HHV6 and all the cardio markers that Lerner has associated with CFS/ME
     
    Last edited: Mar 4, 2015
    taniaaust1 likes this.
  18. Battery Muncher

    Battery Muncher Senior Member

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    @SOC Sorry for being nosy, but what job do you do?

    I need to find work that isn't too taxing as I can't get welfare benefits. (I've never been formally diagnosed with ME/CFS, and probably wouldn't get them even if I was)
     
  19. SOC

    SOC

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    I tutor, mostly from home. I started tutoring only at home when I was still housebound, but added some students I see at their homes as I improved. It's not engineering, or teaching at the college level, which is what I used to do, but it's something I can manage with ME/CFS and it's some kind of income. :)

    PM me for more info if you'd like, so we don't take this thread OT.
     
  20. redaxe

    redaxe Senior Member

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    Myself I'm a lot better than I used to be but still not anywhere near 100%. That said I've had enough success to encourage me to really get out of this, and I'm hoping that antivirals will be the holy grail for me.

    That said about 15 months ago I felt that horrible It honestly was like I was dying - that was probably the worst point of it for me.

    What lifted me noticeably was
    1) Vitamin B12 injections (my first one I felt significantly better within an hour, but after several which seemed to stabilize my neurological symptoms now I notice no effect from them)
    2) N-Acetyl Cysteine 1800mg daily (some of my neurological symptoms seemed like bipolar & OCD - that said NAC has been a miracle for me in stabilizing my mood and making me feel like I have a bit more control over myself.
    3) Perhaps most significant was a course of cephalexin. I took this for sinusitis - A lot of my symptoms like static shocks, orthostatic intolerance & brain fog etc seemed to lift after about 6-7 days of this.
    Supposedly the antibiotic was treating the sinusitis (which did improve a lot) but I'm still a bit suss about it - it does make me wonder if I have some other bacterial infection. I've asked doctors if sinusitis can cause that array of inflammatory symptoms like ortho intolerance & brain fog and they can't really give me a good answer.

    That problem is that it is very difficult to prove the existence of reactivated infections in the heart or nervous system because most of the diagnostic tools physicians employ are tailored to find acute infections (usually in the blood) not chronic long term intracellular infections.
    The good news is I think there is more and more realization in the medical community about latent infections that can reactivate - And the fact is that virtually every human has latent viruses in the CNS. So long as they stay dormant there is no problem.
    For patients it's just a matter of finding a physician who is experienced in this. It's still a bit cutting edge but the science is getting there.
     

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