• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What treatment has worked for you?

What treatment is working best for you?

  • LDN (low dose naltrexone)

    Votes: 0 0.0%
  • Xyrem

    Votes: 0 0.0%
  • Hepapressin ( generic Kutapressin ) injections

    Votes: 0 0.0%

  • Total voters
    3
  • Poll closed .

SaveMe

Senior Member
Messages
421
Location
the city
I will give LDN a shot and post my experience soon. Ive only tried inosine so ill vote for immunovir. From my research these appear to be the most promising treatments for ME . Hepapressin ( generic Kutapressin ) injections is what I pulled from Dr. Enlenders website. I did try Savella (for FM) but got really nauseous and lost my appetite on it. I also tried Inosine and got really bad muscle aches. Weird, i know.
Thanks


OH---and feel free to list a treatment if its not listed above.

just called my pharmacy for cost of Valcyte 450mg for a months supply (30) is $1493.00! and the drug is used for AIDS and CMV.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
When you say "worked for you", do you mean:
1. a cure
2. substantial improvement
3. some improvement in fatigue
4. any unspecified improvement
?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
it depends on what testing finds, if your looking into valcyte, u may find famvir alot more affordable and just as effective as some of us have found. Its not suppose to work against cmv but it has in my case and others with hhv6 have found it lowers viral titres. In my case cycloferon was the next biggy and i cant do without my sleep meds which i alternate amongst a few to avoid tolerance. Adrenal hormones if low are worth looking into if testing low eg cortisol and dhea etc.

So far not a cure but an improvement and still improving and adjusting things as i go.

cheers!!!