• 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.

    To become a member, simply click the Register button at the top right.

If there were no barriers, financial or otherwise, what treatments would you try

littlebird6180

Senior Member
Messages
119
I'm curious to know what some of the groundbreaking but out of reach but promising treatments out there that people would try.

For instance, stem cell therapy, fecal transplants (there was another but sigh...my brain doesn't work enough to remember).

Are there therapies that exist that hold promise but aren't attainable due to cost or other reasons?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
At the moment we have many "helps some with some symptoms" treatments but even those may not be available. The two in this category that helped me the most are no longer available due to regulatory issues: GcMAF and Nexavir.

It may be a time for waiting, as research will probably be pointing to interesting new approaches quite soon.
 

perrier

Senior Member
Messages
1,254
I'm curious to know what some of the groundbreaking but out of reach but promising treatments out there that people would try.

For instance, stem cell therapy, fecal transplants (there was another but sigh...my brain doesn't work enough to remember).

Are there therapies that exist that hold promise but aren't attainable due to cost or other reasons?
Excellent excellent question. I wonder this too.
 

perrier

Senior Member
Messages
1,254
At the moment we have many "helps some with some symptoms" treatments but even those may not be available. The two in this category that helped me the most are no longer available due to regulatory issues: GcMAF and Nexavir.

It may be a time for waiting, as research will probably be pointing to interesting new approaches quite soon.
You hit it on the nail when you say helps some with some symptoms.

But the second point envelopes me daily: when will be there be something that really helps. How soon.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
I believe many people would like to try rituximab if given the opportunity. I don't know if it's something I would like to try myself, I think for now I'd like more studies done on it.

Apart from that, I don't know of any effective treatments, apart from several nutritional supplements which have improved my quality of life: d-ribose, methylfolate, MB12, P5P, branched chain amino acids (the BCAAs cut my PEM recovery time in half), B1, potassium gluconate, foods high in phosphorus (kefir, sunflower seeds), niacin or niacinamide for sleep, adrenal glandulars (e.g., Drenamin by Standard Process), Naturethroid (desiccated thyroid) and andrographis - the andrographis has helped me a lot with a near-constant sinus infection of some type, as well as helping my adrenals and thyroid.

I would be noticeably worse off without any of these.
 

Dainty

Senior Member
Messages
1,751
Location
Seattle
A tropical island all to myself with everything I need - good food, stable housing, and sufficient income to live off of.

I have been in recovery for the past 5 years after cranial osteopathy treatment, but stress significantly slows the recovery process. The treatment I would try, if money wasn't a factor, is some sort of ideal living situation, and then relax, rest, and heal.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
A tropical island all to myself with everything I need - good food, stable housing, and sufficient income to live off of.

I have been in recovery for the past 5 years after cranial osteopathy treatment, but stress significantly slows the recovery process. The treatment I would try, if money wasn't a factor, is some sort of ideal living situation, and then relax, rest, and heal.

Oh yeah, that too! :nerd::thumbsup:
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Comprehensive IV therapies can be extremely helpful, as they get the job done more quickly and effectively than oral anything.

These would include mito cocktails, customized nutrients, lipid replenishment, immune system support and immunomodulators, and antiviral or antibacterial substances.

Oxygen therapies, including HBOT, ozone, rectal insufflation, and the related UVBI can be very helpful, too.

Fecal transplants are interesting, too, as long as we didn't pick up anything unsavory.

And metabalomics and other testing to know what's wrong, so that the above can be individually customized.
 

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
fecal transplant, full blood transfusions as @Skippa mentioned earlier. I'll get tested for all sort of pathogens including hhv-6, coxsackie virus, borrelia, giardia, etc, and treat the potential infections. I'll get medication for POTS, such as fludrocortisone
 

wastwater

Senior Member
Messages
1,271
Location
uk
I think I would use money to gain further information starting with a whole genome scan
 

maybe some day

Senior Member
Messages
775
Location
West coast
I don't want any more treatments.Too many times my heart broke from hopes that never became a reality. If I had endless supply of finances..I would give it all to Ron and his team. Im handing the baton to him on my knees because honestly for me, nothing really ever worked to make me feel that much better. I gave up searching quite some time ago.
 
Last edited:

dangermouse

Senior Member
Messages
430
Honestly, I don't know. I don't feel competent with knowledge as yet (brain is hit and miss) and am tentatively hopeful of Ron's research (as well as the other promising research currently being undertaken).
 

littlebird6180

Senior Member
Messages
119
I don't want any more treatments.Too many times my heart broke from hopes that never became a reality. If I had endless supply of finances..I would give it all to Ron and his team. Im handing the baton to him on my knees because honestly for me, nothing really ever worked to make me feel that much better. I gave up searching quite some time ago.

This really hit home for me. I too would invest in his research if I could and I'm pinning a lot of hope on it. Right now I guess it seems like there's a lot of research showing promise and maybe just hanging on for another few years until they develop a treatment. I hope to see Whitney recover and am grateful not to be as sick as he is.