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Top 10 treatments for CFS list

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I'd put pacing at the top of the list.

Haven't tried the rest. A guy at my ME self-help group tried D-Ribose and said he felt great for 5 days, almost normal. Then after the 5th day all positive effects stopped. He thinks his body re-adjusted and just produced less of whatever it was he was consuming more of.
 

sorin

Senior Member
Messages
345
I'd put pacing at the top of the list.

Haven't tried the rest. A guy at my ME self-help group tried D-Ribose and said he felt great for 5 days, almost normal. Then after the 5th day all positive effects stopped. He thinks his body re-adjusted and just produced less of whatever it was he was consuming more of.
That's bad. And even if D-Ribose would help for energy I am wondering how the other problems (such as neurological ones) can be solved? Or these ones, once installed can not be cured?
 

Denise

Senior Member
Messages
1,095
My understanding is that many specialists ask patients to rank their top 3-5 symptoms and treatment begins based on trying to ameliorate those symptoms.
 

Gingergrrl

Senior Member
Messages
16,171
The list seems very old as it mentions at least one as a treatment for XMRV! I personally do not tolerate any Vit B or methylation supps and cannot tolerate multi-vitamins with too many ingredients in them. Things like that make me very agitated or give me tachycardia. I tried d-Ribose 2-3x a day for over a year and it had absolutely zero affect on me (good or bad.) Have not tried the other things on the list but tried other anti-virals.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
Where is Valcyte, Famvir or valtrex?
Pick any one on that list and start.


Rutiximab is not available for treatment as it is still in clinical trials and there are those that feel a certain subsets of patients, those plagued wjth infections, (like me) would not be a good candidate. They still as far as I know havent figured that out.

To just say rtx is the best is premature. I'll take. Ampligen please.

Treatment Is individual. If it was one size fits all then there wouldn't be all these people using different therapies, different supplements and having different outcomes

As @Gingergrrl Said that list is outdated. 5 years is an eternity. If you're looking for treatment why look at something so old. Look at @Hip roadmap.
 
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Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Where is Valcyte, Famvir or valtrex?
Pick any one on that list and start.


Rutiximab is not available for treatment as it is still in clinical trials and there are those that feel a certain subsets of patients, those plagued wjth infections, (like me) would not be a good candidate. They still as far as I know havent figured that out.

To just say rtx is the best is premature. I'll take. Ampligen please.

Treatment Is individual. If it was one size fits all then there wouldn't be all these people using different therapies, different supplements and having different outcomes

My point is that no other medication for ME, has the same promising data as rtx. do
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
And I disagree.

This is the same frenzy that went on with XMRV. I didn't hop on that bandwagon and I won't blindly follow this.

No it is not.. With XMRV one searched for a virus, with the rtx-trials one is treating ME with medication. And two thirds respond to some degree. One third has major responses. If you disagree, show me other clinical trials with the same promise in terms of remissions.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
Im not interested in debating this. I'm not interested in producing data. There are threads all over the place on this. It's ongoing.

My answer to the original post is if someone is looking for treatment NOW, a list from 2011 is not where I would start. Thing have evolved over the last 4-5 yrs.
 
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Mary

Moderator Resource
Messages
17,291
Location
Southern California
@sorin - d-ribose did help me noticeably with energy when I first started taking it 10 years ago (how time flies! :eek:), and actually still seems to help my energy. I tried cutting it out for a couple of months, a couple of months ago, and gradually realized my energy was not what it used to be, so I went back on it.

I think inosine may also be helpful for me. My HHV-6 number has dropped significantly in the last 2 years, and it's the last 2 years that I've been taking inosine - it may be a coincidence, maybe not.

The list is a little old but I wouldn't call it useless. We all have to do our own research and trial and error experimentation and I think there are some things on the list worth exploring, but as mentioned above not up-to-date and omits many things (like antivirals) which have helped a lot of people.

I've always wondered about Nexavir - I don't know it it's still available, and why was it so pricey, and if it helped people so much, why isn't it still available - anyone?
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
I've always wondered about Nexavir - I don't know it it's still available, and why was it so pricey, and if it helped people so much, why isn't it still available - anyone?
I find Nexavir very helpful and have no idea why it is so expensive. When it was called Kutapressin and made by another company, it was much less expensive. Nexavir is no longer available in the US, but is available in the Netherlands and called 4ME, and is slightly less expensive--90 euros for ten, 2 ml ampoules. http://www.kalidashop.com/en/4me.html
 

Mary

Moderator Resource
Messages
17,291
Location
Southern California
@Sushi - can you tell briefly how Nexavir helps you - what symptoms it helps with?

And how much and how often do you take it? How long do the ten 2 ml ampoules last?
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
@Sushi - can you tell briefly how Nexavir helps you - what symptoms it helps with?
And how much and how often do you take it? How long do the ten 2 ml ampoules last?
It helps my symptoms pretty much across the board. Also, since I've been using it (some years), I've had no herpes simplex outbreaks--which used to occur regularly.

I sort of ration it since my insurance stopped paying for it and only inject 1 ml whereas 2 mls would probably be better. I inject every other day. So ten, 2 ml ampoules will last me about 1 1/2 months.