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Poll: Which Type of Treatment Has Worked Best For You?

Discussion in 'General Treatment' started by Jesse2233, Feb 9, 2017.

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Poll: Which Type of Treatments Have Worked Best For You

  1. Prescription anti-virals (i.e. Valcyte, Ribivarin, Famvir)

    7 vote(s)
    10.1%
  2. Supplemental anti-virals (i.e. OLE, DHQ, Neem)

    4 vote(s)
    5.8%
  3. Immunomodulators (i.e. LDN, Equilibriant, Nexavir, Interferon)

    9 vote(s)
    13.0%
  4. Metabolic Supplements (i.e. D-Ribose, CoQ10, Glutathione)

    15 vote(s)
    21.7%
  5. Methylization Support (i.e. B12, etc)

    17 vote(s)
    24.6%
  6. Stimulants (i.e. Ritalin, Provigi, Caffeinel)

    5 vote(s)
    7.2%
  7. Prescription Anti-anxiety (i.e. Xanxan, Klonapin)

    5 vote(s)
    7.2%
  8. Prescription Anti-depressants (i.e. Prozac, Zoloft)

    3 vote(s)
    4.3%
  9. B-Cell Depletion (i.e. Rituximab)

    1 vote(s)
    1.4%
  10. Gut support (probiotics, prebiotics)

    12 vote(s)
    17.4%
  11. Atypical Treatments (Naphazoline, Nitroglycerin, Ketamine, N

    4 vote(s)
    5.8%
  12. IVIG

    2 vote(s)
    2.9%
  13. Plasmapheresis

    0 vote(s)
    0.0%
  14. Relaxation techniques / meditation

    4 vote(s)
    5.8%
  15. Psychotherapy / CBT

    1 vote(s)
    1.4%
  16. Acupuncture

    2 vote(s)
    2.9%
  17. Graded exercise

    0 vote(s)
    0.0%
  18. Have not been able to get treatment

    15 vote(s)
    21.7%
  19. Pacing

    38 vote(s)
    55.1%
  20. Anti-microbial / anti-biotic

    11 vote(s)
    15.9%
Multiple votes are allowed.
  1. Jesse2233

    Jesse2233 Senior Member

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    Edit: This poll now has a sequel Treatments That Have Not Helped

    Hi everyone,

    I was looking for a post like this but couldn't find one. If there's a pre-existing one please point me in that direction.

    It'd be interesting to learn in a general way what's worked best. Obviously this will be somewhat skewed by a given treatment's popularity, availability, and newness.

    Please respond if your diagnosis corresponds with the Canadian Consensus Criteria for CFS/ME

    Let me know if I'm leaving any major categories off or using improper terms

    Thanks!

    Edit: it won't let me add anything new. If you have anything else to add (such as mold remediation or metal detox) feel free to post a reply
     
    Last edited: Feb 9, 2017
  2. TigerLilea

    TigerLilea Senior Member

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    Vancouver, British Columbia
    You need the option of "Nothing has worked so far".
     
    Orla, Woolie, Sidereal and 8 others like this.
  3. brenda

    brenda Senior Member

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    You also need the option - diet.

    The autoimmune protocol has taken me from not functioning at all and feeling l could not survive, to functioning at a much higher level, having a life again, going on holiday, walking with a walking group etc and this despite untreated Lyme disease for nearly 20 years on top of pesticide and mercury poisoning.
     
  4. justy

    justy Donate Advocate Demonstrate

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    I voted IVIG, but actually I take low dose SCIG and it wasn't on the list. also B12 should have its own separate listing, not just under methylation as that's a whole other thing.

    How about a box for 'other', a box for unable to get treatment, and a box for everything doesn't work or makes me worse. Olus one option for MCAS meds/antihistamines cos a fari few of us take them.
     
    Gingergrrl and Aroa like this.
  5. Webdog

    Webdog Senior Member

    Stimulants have worked for me short term. But with unacceptable long term health consequences.

    Graded exercise has worked for me during remission. But during a relapse, graded exercise makes me much worse.

    Valtrex has helped slow the decline of my health, but hasn't really resulted in much improvement. Oddly, Valtrex has apparently significantly improved my chronic sinusitis.

    Psychotherapy helps a bit with dealing with the day to day reality of this disease. Then again, I've had too many psychiatrists who have misdiagnosed me, prescribed inappropriate treatments, and told me it was all in my head. CBT and mindfulness both have been worthless. Overall, psychiatric treatment has very significantly and permanently worsened my health and quality of life.

    LDN continues to help with my various neuro symptoms and improves my sleep, but not as dramatically as when I started it a year ago.

    I haven't been offered most of the items on your list, and they probably wouldn't be covered by insurance anyway.
     
    Last edited: Feb 9, 2017
    Aroa likes this.
  6. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Where is pacing? Is probably the most used and most popular method to treat ME and CFS!
     
    rebar, PatJ, Valentijn and 5 others like this.
  7. TigerLilea

    TigerLilea Senior Member

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    Vancouver, British Columbia
    "Have not been able to get treatment" is not the same as "No treatment has worked". I've been able to get treatment. It hasn't worked.
     
    Woolie and JAH like this.
  8. helen1

    helen1 Senior Member

    Messages:
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    1,367
    Canada
    How about adding antimicrobial supplements. Antiviral supplements are only one type of antimicrobial.
     
    Mel9 likes this.
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Just my opinion but I don't think that a Poll asking this question is all that useful unless it's tied to a context. In other words, how long have you been ill, what type of symptoms do you have and some sort of assessment of how to measure what is meant by 'worked for you'.

    Was the person doing more than one therapy?
     
    Last edited: Feb 9, 2017
    Cohen2, Neunistiva and barbc56 like this.
  10. Jesse2233

    Jesse2233 Senior Member

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    Agreed. This is a quick and dirty way to visualize the more successful treatments in one place. A more robust survey system would better capture the context
     
  11. Neunistiva

    Neunistiva Senior Member

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    Maybe for every treatment there should be

    1. Tried it, worked
    2. Tried it, didn't work
    3. Didn't try it
    This was you are more visualising most common treatments rather than most successful (for example, a teatment that 20 people tried and 20 people got better on is more interesting than treatment that a million people tried and 30 got better)
     
    Sing likes this.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cornwall, UK
    I think a lot of us have benefited (like me - for a couple of years anyway - maybe not currently!) from removing gluten/gliadin, and sometimes also avenin, from our diets.
     
  13. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    This might be very important. Figuring out what to try last is almost as good as figuring out what to try first.
     
    Sing likes this.
  14. Jesse2233

    Jesse2233 Senior Member

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    Good idea!
     
  15. Jesse2233

    Jesse2233 Senior Member

    Messages:
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    Likes:
    4,326
    Southern California
  16. Gingergrrl

    Gingergrrl Senior Member

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    I voted for IVIG but in my case I would also need a category that said "Mast cell or MCAS medications" b/c without them I never would have lived to try the IVIG!

    ETA: I just realized that I added something to your other poll of what didn't work vs. here for things that did work. So when I mentioned moving away from mold and mold treatments, for me I meant it as something that was helpful.
     
    Last edited: Feb 9, 2017
    Jesse2233 likes this.
  17. Sushi

    Sushi Senior Member Albuquerque

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    Albuquerque
    Another editing thought: many of us take klonopin--not as an anti-anxiety medication but to move us from the seizure end of the continuum down in the direction of coma. In other words, for excitotoxicity rather than anxiety.

    In atypical, you could also add GcMAF. My doctor prescribed Nexavir as an antiviral, though it does have other properties. I know--it is impossible to include everything!
     
    ArunP likes this.
  18. lnester7

    lnester7 Seven

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    USA
    I see missing antibacterials( I have not done this ) and OI meds those are what has helped me the most
     
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cornwall, UK
  20. bertiedog

    bertiedog Senior Member

    Messages:
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    South East England, UK
    From my point of view the most important thing I have got big benefit from is the correct thyroid medication along with adrenal meds. Following on from that has been herbal treatment for a year and half but cannot add either to this poll.

    Pam
     
    Sing likes this.

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