How Much Longer?

[Insomniac]

...how much longer do any of us expect to wait before we can access something that at least helps some cohorts?

I take hope not only from Rituximab.

I also take hope from:

- Xyrem will be out of patent in 2020.
The improved sleep that gives to even a small percentage of us who can tolerate it might help. Belsomra will eventually go out of patent too and be cheap and more tested and available to CFS patients with our lousy sleep.

-I am saving up for trying hyperbaric oxygen treatment which brings improvement to 70% of fibromyalgia patients. It will take years for me.
http://www.futurity.org/pain-of-fibromyalgia-women-hyperbaric-oxygen-therapy-933962\

I talked to the doctor who did the research and he said that he had a few "CFS" patients that it helped too but there is no research. If ME/CFS is autoimmune, HBOT logically could help because Lupus and MS are autoimmune and they are helped by this treatment.

- I take the most hope from from the CFIDS Foundation research. Their cohort, which are all "CFS/ME" patients who were positive on the ciguatera test and who have one or more of the following abnormal: cd4, cd8, cd19, t cells or nk activity or number.
Their theory is that this is an autoimmune disease that progresses towards cancer and is caused by very low dose ionizing radiation. They believe this because a significant percentage of Chenobyl victims got the symptoms of M.E, (including some of the weirder symptoms like synacope and allergies/intolerances.) and also because STAT-1 is depleted in ME and ionizing radiation does that too. Only a limited number of pathogens can deplete STAT-1.
The head of the group says that although there is no known way of removing radioactivity from the body but it can be blocked. They are now funding 2 researchers. Each researcher is looking at a different way of blocking the damage being done in the body. One of the researchers has family with this.

None of us can know what will happen in the future.

 

[nandixon]

@sparklehoof

Reading between the lines, I'm guessing that you and your ME/CFS doctor were hoping to have you treated with rituximab via your rheumatoid arthritis diagnosis, perhaps in part so that it would be covered by Medicare. And that initially the rheumatologist had agreed to the infusions, but then backed out, either because he ultimately didn't think the RA was bad enough or because he didn't want to do it when it would be primarily for your ME/CFS (or both). Which is a shame, of course, and I know you must have been extremely disappointed, as would I.

I don't have RA but do have some arthralgia, and I was hoping to possibly employ a similar "strategy" to obtain rituximab if I had tested positive for anti-CCP. But that came back negative. (I'm also negative for RF.)

Anyway, I was wondering if you had tested positive for both RF and for anti-CCP, or just one or the other?

If you are positive for anti-CCP but not RF, would you mind mentioning that on the following thread?:

Pilot study: "Identification of anti-citrullinated protein antibodies in ‪CFS‬" plus call for funds

If you are positive for both anti-CCP and RF, perhaps you might still be able to find a rheumatologist who would be willing to help you with the rituximab.(?) Good luck with everything!

 

[Chriswolf]

@sparklehoof

I'll be okay, I was more or less relaying circumstances that may result in similar sentiments of impatience and frustration that are common to sufferers of CFS.

Unfortunately there seems to be a trend among ME/CFS sufferers to be bandied about without much actual effort made on their behalf to improve their quality of life on the part of doctors. The development and implementation of bad policies via their employers and the medical community only compound this issue.

I live in Canada, probably one of the worst places policy wise to have CFS by virtue of our public healthcare system. Ideally I'd like to look into private clinics in the U.S, if none look promising, I'm willing to go to asia. Apparently there is a private hospital in China that specializes in autoimmune disease. However even going to Thailand would be preferable to the healthcare we have here. Public healthcare correlates quite negatively to rare and difficult to treat disorders as public healthcare systems inevitably become concerned with cost cutting and liability-avoidance. When you are not paying cash-in-hand to somebody under the assumption that they are working in favor of your interests, you stand a far lower chance of getting meaningful treatment.

The curse of most publicly funded services is they eventually become stretched too thin, and that's when measures are taken to reduce the fiscal impact on said services in any way possible. This is what triage really means in such a system, people like myself and others are told to pop happy pills and shut up, same thing with GET, it's a low-cost, low-effort strategy for the system to claim it has "done something" without doing anything at all.

It is really difficult to explain how deliberately and pathologically restrictive our healthcare policies are here, antidepressants are prescribed as a panacea for everything that does not fall under other conventional means of treatment.

I will not have access to drugs such as LDN, Cholestyramine or Nalcrom, or any other drugs that might help ameliorate my symptoms because it is virtually impossible to get on those (especially the latter two) unless you've already endured life altering permanent injury due the progression of your disorder.

Objectively, this is enough alone to make even the strongest people experience feelings of trepidation, all things considered.

 

[PatJ]

I will not have access to drugs such as LDN, Cholestyramine or Nalcrom, or any other drugs that might help ameliorate my symptoms because it is virtually impossible to get on those (especially the latter two) unless you've already endured life altering permanent injury due the progression of your disorder.

I'm in Canada. I didn't bother trying to get a doctor to prescribe LDN. Instead I ordered Naltrexone online from here. Then I mix the Naltrexone tablet with distilled water to lower the dose. I keep the mixture in the fridge to slow any bacterial growth.

50mg of Naltrexone mixed with 50ml of distilled water gives 1mg of LDN per 1ml of water. The ratio of water to Naltrexone can be adjusted for more gradual dosing (ie. 50mg of Naltrexone + 100ml water = 0.5mg LDN per 1ml of water.)

(Edited to reflect @BurnA's useful comment)

 

[BurnA]

I'm in Canada. I didn't bother trying to get a doctor to prescribe LDN. Instead I ordered Naltrexone online from here. Then I mix the Naltrexone tablet with water to lower the dose. 50mg of Naltrexone mixed with 50ml of water gives 1mg of LDN. The ratio of water to Naltrexone can be adjusted for more gradual dosing (ie. 50mg of Naltrexone + 100ml water = 0.5mg LDN.)

Sorry, just to be clear here:
50 mg of Naltrexone with 50ml of water give 1 mg/ml of LDN.

 

[Chriswolf]

I wasn't even aware that you could get it without a prescription, well that is definitely interesting, I'm going to have to look into that.

Thanks for bringing that to my attention.