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Really scared - when will there be an effective treatment?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Jan 30, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    That helps most people regain functionality? Honestly

    Thought this was normal post viral fatigue but it's getting worse

    My story: http://forums.phoenixrising.me/index.php?threads/prolonged-post-viral-fatigue-or-cfs.48993/

    Was walking, talking, watching movies. Now bed/couch bound 99% of the time

    Everything I read seems so bleak

    Do I have hope to get better? Should I try a Dr Goldstein treatment like nitroglycerin or Equilibriant to try to stop the progression before it gets worse? Should I find a ketamine injection clinic? So depressed but worried about damage from antidepressants

    Scheduled to see Chia in May, should I Skype with Dr Enlander in the meantime?

    Please help
     
  2. caledonia

    caledonia

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    It's possible you're experiencing a set back from the walking. 1+ miles a day is a lot if you're in some kind of fatigue state.

    I agree with the others on doing aggressive resting.

    The vast majority of people with postviral fatigue recover, so even if it's taking a long time, the odds are in your favor. So my suggestion would be to hang onto the thought that you're going to be one of the ones who do recover.

    I think the main things to work on now would be getting good sleep and alleviating your anxiety and depression.

    My suggestion would be to start with gentler non-aggressive interventions first - just in case you do have ME/CFS it's easy to make yourself worse because you may be sensitive to meds and supplements. Then if those don't help, try something stronger, but try a low dose first to test your reaction. Then if it's tolerated, you can try increasing the dose.

    So my overall suggestion would be magnesium which is calming, and may help with sleep and anxiety. It's usually well tolerated. Any form except magnesium oxide, which doesn't absorb well. So something like, magnesium citrate, taurate, glycinate, etc.

    The rule of thumb for magnesium is to gradually increase the dose over a number of days until you get diarrhea, then back off a bit, and that is "your" dose.

    An Epsom salt bath would do the same thing (that's magnesium sulfate).

    Then talking to a professional psychologist (cognitive behavioral therapist) can be very helpful. I had one while I was getting sick with ME/CFS (I had a gradual onset). She diagnosed me with "adjustment disorder" - basically it means you're experiencing anxiety and depression because life has thrown you for a loop. This is a natural reaction to what is happening to you.

    She helped me deal with the uncertainty of not knowing what was going on, if I would ever get better, finding a doctor who could diagnose me, and eventually when it became evident I was going to be disabled, applying for disability and finding a disability lawyer. Therapists often have connections to doctors and lawyers they can suggest, so that was very helpful.

    A therapist can help you learn various relaxation techniques such as progressive relaxation or meditation and help you get out of the thought spiral that causes you to have more anxiety.

    If you can't get out of the house, there are therapists at DoctorOnDemand.com, who you can talk to via Skype.

    If you have more than mild to moderate situational anxiety or depression, they will let you know it's time for medication.

    There are some alternatives to SSRI medication, such as the inositol Hip mentioned. 5htp is another option. They both increase serotonin. PharmaGABA is another - it raises GABA, which is calming.

    It might not be a bad idea to see if you have adrenal fatigue. You can have both sleep issues and anxiety from that. You can do a 24 hour cortisol saliva test for that. You can get a combination test that tests both your neurotransmitter metabolites and adrenals called a neuroadrenal test.

    This is the one I got last time - http://www.integrativepsychiatry.net/neuroadrenal_profile.html. The nurse practitioner there was very nice to talk to and had some good suggestions for me for both neurotransmitters and adrenals.

    Based on my experience, I would suggest trying things like that first, before trying an SSRI.
     
    Jennifer J, starlighter, Mary and 3 others like this.
  3. BruceInOz

    BruceInOz Senior Member

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    Please remember that on this forum you are only hearing anecdotal stories from those that DIDN'T get better from where you are now. From talking with us you might conclude your probability of recovering is non-existent but that is definitely not the case. Take from here the advice on resting etc., but don't give up hope just because you only hear from long-time sufferers. This site has selected us. The many who recovered early just aren't here.
     
    Jennifer J, Murph, Hutan and 3 others like this.
  4. Jesse2233

    Jesse2233 Senior Member

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    Thank you, that makes a lot of sense, so I can still recover even though I seem to be getting worse?
     
    Dechi likes this.
  5. Sushi

    Sushi Senior Member Albuquerque

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    Well, we don't know when but things are looking more optimistic than they ever have in the history of this illness. Dr. Ron Davis said that there would be a break through by the end of the year.
    You are reading the wrong stuff. Our stories can be bleak because the history of the illness has been bleak. Read the research section instead--it is anything but bleak.
    Yes, have hope. As far as what you should try, we can't give input there but you can read what people have reported about what they have tried.
    You can read here about the protocol that Dr Enlander usually prescribes and people's response to it. Dr. Englander is mostly retired and that may affect your decision to work with him or not.
     
  6. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    May 19`th this year there will come incredible treatment :snigger::woot::whistle:
     
  7. AndyPR

    AndyPR Senior Member

    Huh?
     
    Dechi likes this.
  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    bad-joke-great-sense-of-humor_o_356767.jpg
     
    AndyPR likes this.
  9. perrier

    perrier Senior Member

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    I am also sitting on the edge of my chair waiting for real treatment,not just symptom relief.....

    Is there going to be a real breakthrough soon? I really need to hear.....
     
  10. Daffodil

    Daffodil Senior Member

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    @Jesse2233 I was bedridden and got a good amount of functionality back with Dr. DeMeirleir
     
  11. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    A breakthrough for me would simply be if e.g cyclo and rtx got through phase 3, cause then maybe doctors could start experimenting a bit more with immunomodulators/immunosuppressives without losing their license.
     
    Murph and RL_sparky like this.
  12. knackers323

    knackers323 Senior Member

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    @Daffodil mind me asking how he did this? thanks
     
  13. Daffodil

    Daffodil Senior Member

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    antibiotics + supplements

    got sick after mono in 1993
     
  14. knackers323

    knackers323 Senior Member

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    Last edited: Feb 2, 2017

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