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Disease onset and progression?

Discussion in 'General ME/CFS Discussion' started by Aerose91, Nov 5, 2013.

  1. Aerose91

    Aerose91 Senior Member

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    I know I'm posting a lot here lately but I'm trying to get the whole scope of what I'm dealing with here and all of you guys are so knowledgable :)

    I'm wondering if the disease onset and progression from the beginning plays a role in your likelihood of recovery?

    For instance, my onset was acute. Very acute. I could tell u the minute this hit me and it was probably a 50% reduction in function immediately. Since then, it had been a steady progression downhill regardless of way I'm doing/taking. I have had a few major, major regressions after overexertion and both have been (so far) permanent. As of 8 months with a perfect diet and all the right supplements I continue to decline.

    Does this prove my worst fears that I do not have a very good prognosis because I have taken such a poor path so far? I'm wondering what other people experienced in their first year or so of sickness
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You are very early in the illness and this usually means you have a better chance of recovery. But, you need a good doctor. Many people do well with aggressive treatment (of the right type) at this stage.

    A severe onset is not necessarily an indication that you will have a harder time recovering. Read some more people's stories here and you will see some of the patterns. Many people continue to decline without good treatment. To me this is an indication that it is a good time to look for the best testing and treatment that you can get.

    Best wishes,
    Sushi
     
  3. caledonia

    caledonia

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    I don't think you can say anything about disease onset and progression and chances of recovery. I've heard of people in various conditions with various onsets being recovered, and not always within the first few years either.

    I had a gradual onset, with an EBV reactivation dealing the final dramatic blow into disability. I felt consistently horrible the first year. Probably about as close to bedridden as you can get without actually being bedridden. Horrible MCS, reacting to everything, etc. Nausea, flu-like muscle and joint aches, horrible headaches, constant anxiety, you name it.

    What is your treatment?
     
    Allyson likes this.
  4. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I had sudden onset like you. I know exactly when the virus that I never recovered from hit. After my initial horrible fatigue I rallied for a long time.

    If I had aggressive medical intervention I'm sure I would be in better shape than I am now but that was almost 20 years ago and there were only a few doctors around.

    Find a good doc and start treatment. If you can't find one start treating yourself. You can get pretty much anything you want if you know where to look.

    Mink
     
    heapsreal likes this.
  5. Aerose91

    Aerose91 Senior Member

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    Thank you for the replies.
    I have been seeing DR enlander for a couple months now and I am on valcyte even though he thought it was too early. I, however, pushed for it because of how bad I am. I also tested positive though for Parvo B19, M Pneumoniae, EBV on top of the HHV-6. He has me on his protocol but it is mostly just supplements that I was already taking anyway. I have since learned that there are some treatments for the other viruses that I have and like you guys said- I want to hit them as early as possible. DR enlander is a good doctor but he doesn't seem aggressive enough to me, especially since I'm in such a critical time here and I'm as bad as I am. Is there anyone else on the east coast that may be able to offer me a more aggressive approach? If not I will travel anywhere.
     
  6. vamah

    vamah Senior Member

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    Maybe blessing in disguise. I am worried that, since my progression was so gradual, I have missed to opportunity to attack it agressively. Wonder if I will ever get back what I have lost over those years.
     
  7. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Look into Equlibrant or Oxymatrine. It's an antiviral that a lot of people are having luck with. I just ordered mine to add to what I'm taking.
     
  8. Aerose91

    Aerose91 Senior Member

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    I will, thank you
     
  9. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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  10. Aerose91

    Aerose91 Senior Member

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    Minkeygirl

    Thanks for that link, very interesting. The only tests I had done for enteroviruses was for coxackie B viruses through dr enlander and that came back negative but I've now heard that that may not be sensitive enough.

    I am interested in trying to get to to dr chia to get tested for enteroviruses because if oxymatrine or something else out there would be helpful for me I want to get ahold of it soon.
     
  11. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I don't know if I have enteroviruses but it can't hurt.

    I also have psoriasis and the Chinese used oxymatrine to treat it.

    It's cheap enough to try and there are people here who have has good results with acyclovir, which I am currently on, and oxymatrine.
     
  12. Aerose91

    Aerose91 Senior Member

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    I took acyclovir for a while and it didn't do anything, but Ill look into the oxymatrine. You don't need a prescription huh?
     
  13. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I have really good luck with acyclovir. I'm waiting to hear if my doc will give me Famvir. If not I'll get it on my own.

    You can get Equilibrant or oxymatrine without an rx. Most people get White Tiger Oxymatrine.
     
  14. SOC

    SOC Senior Member

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