Two most effective treatments?

[Calathea]

It's important to remember that some people have found great benefit from certain treatments but have not necessarily recovered, and may even be continuing to deteriorate.

1. Pacing, unsurprisingly. It makes the whole thing far more livable, and has probably prevented me from deteriorating further.

2. Darkness therapy (see this site for details). This improved my sleep by perhaps 80%. The main thing is that I can now go to bed at a normal time and stay on a 24 hour schedule, which is fantastic for someone with Non-24 Sleep-Wake Disorder (I was on a 25 hour schedule before). Light therapy helped too, but the main thing that I've been using consistently is darkness therapy, I seem to be able to get away without the light therapy these days. It's hard to tell how much this helped the ME, I've had a lot of different factors involved over the years, but the appalling sleep problems I had before were very noticeably making life a lot worse. This was partly because I was on a completely unpredictable schedule and couldn't even have support workers in without risking severe sleep deprivation, and partly because all the sleep deprivation hugely increased fatigue, pain, brain fog and so on. When I occasionally have bad sleep again, e.g. due to a medication problem, it's shocking how much worse it immediately makes me.

 

[underdog]

First of all thank you for all replies so far.

In your original post, you said "I'm trying to make my mind up as to what treatment to try next." That sounds like it's about you. "

Yes, you're right. That initial post of mine wasn't very clear.

Hi Underdog, welcome to the forums.

I think it's a good idea for a thread, for people to list their top 2 treatments, because a nice clean thread with lots of short, simple posts would give an interesting overview of which treatments people here find to be effective. It seems like a good way to get the 'big picture' and get some good ideas you could pursue.

At the same time, nanonug makes a good point that we are a mixed group with different individual histories, and what helps each of us most will differ depending on our circumstances, so it's also good to find out a bit more about your own history and then people with similar experience can suggest things that worked for them, which might be more relevant to you. I'm sure nanonug is only trying to be helpful by pointing that out and offering to comment on the test results you've now posted.

These two different approaches have unfortunately got rather mixed up already in this thread, so I'm wondering if it might be a good idea for you to start a separate thread where you post a bit of detail about your test results and symptoms, post a link here to that thread, and nanonug and others can respond to that extra information there.

The moderators can then tidy up the situation by moving the off-topic posts from this thread to the other one, and we can get this thread back on your stated topic of the two most effective treatments.

It would then help us a lot if people can please stick to the topic of stating their '2 most effective treatments' on this thread from now on, so that we have less work to do tidying it up - thanks!

Mark,
Yes that was the intention. A thread of short posts that people could easily look up and see what is moving other forward.
I realize this may be an oversimplification, because the same treatment may have not worked for someone else.
But if we could see anyone helping different people, I reckon that would be helpful information.

I appreciate people wanting to help. I do. But I still don't know in want direction to move. So I think I need to sort that out first, and I thought this data gathering could help with that.

Yes, starting a separate thread would be great. I was wondering whether there's a way to have a sort of spreadsheet or table format in which replies could be posted. That would make looking up much easier.
Also, I realized that it would be more helpful to have a standard reference to measure improvements, for e.g. the PR activity scale.
If anybody has any good ideas on how to do this better, please post it.
Thank you.

 

[xchocoholic]

The paleo diet / now wahls, addressing my sleep problems with melatonin, theanine and 5 htp
and realizing that I really need to lay down flat for an hour at a time regularly for my orthostatic intolerance during the day have helped.

So I have three .. I'm betting most of us can't stick with just two. Brain fog or not .. Lol

fwiw, I had quite a bit of testing for nutritional deficiences, parasites, dysbiosis, nutritional deficiencies, etc. and while this helped, I think I'd skip to the wahls diet now and see if these are needed.

tc .. X

 

[Jenny]

Underdog - there are quite a few other threads where people describe what's helped them most. See, for example:

http://forums.phoenixrising.me/show...bed-housebound-to-high-level-of-functionality

Jenny

 

[Sallysblooms]

For me every supplement works with the others. HUGE list. I can't get it down to two for CFS. That is so MUCH better.

For POTS, the two most effective are Alpha Lipoic Acid and Benfotiamine. Also, LOW, LOW sugar and carbs. All help the nerves heal for my Autonomic Neuropathy (POTS.) Much improved with POTS also.

 

[Patrick*]

It's really hard to narrow it down to just two for me, but if I had to, I would probably say:

1. Low-carb, no processed sugar diet. 95% improvement in GI symptoms; maybe 10% overall.
2. D-ribose: 5grams, 2x day - maybe 10% improvement

I agree with the other people that say that overall improvement may be the combined effect of all treatments. I broke down all my treatments and how I rated their effectiveness in this blog post.

 

[heapsreal]

zopiclone for sleep and antiviral famvir for cmv/ebv, this has got me from working part time to being able to work fulltime which is a struggle sometimes but still managing. If i list the other things i do its a long list, lol. Helping support iherb lol.

 

[Charles555nc]

My regimen that has me improving steadily everyday...just added hormones.

http://forums.phoenixrising.me/show...dded-hormones-to-the-list&p=252916#post252916

 

[Hanna]

1. a paleo diet
2. "grounding" : I am not able to walk in the street more than a few meters and use wheelchair, but walking bare foot on the grass is my best "medecine" at this time. No cure, but more energy and don't get PEM after it (of course I pace myself).

 

[Asklipia]

1. Menatetrenone (MK4 sold under the name "Glakay" by Eisai (Japan) 60% cured if you can give such a rating, followed by
2. Bains Drivatifs (a kind of special sitz bath very easy to do, does not need any equipment, which seriously lowers the temperature of the core and seems to balance the parasympathetic and sympathetic systems. Every day 25 mns. It HAS to be started very slow, 5 mns at most for first week, the effect is huge and can be brutal. extra 30% cured.
Was left with a small B2/B12 deficiency - possibly other Bs (some eye problems and some skin problems).
Feeling well, apart from the eye problem and swimming every other day, climbing the hills with no difficulty. Learning a new language after years of brain fog. Touching wood, it looks like there is a definite hope for a real cure.

 

[Hanna]

1. Menatetrenone (MK4 sold under the name "Glakay" by Eisai (Japan) 60% cured if you can give such a rating, followed by
2. Bains Drivatifs (a kind of special sitz bath very easy to do, does not need any equipment, which seriously lowers the temperature of the core and seems to balance the parasympathetic and sympathetic systems. Every day 25 mns. It HAS to be started very slow, 5 mns at most for first week, the effect is huge and can be brutal. extra 30% cured.
Was left with a small B2/B12 deficiency - possibly other Bs (some eye problems and some skin problems).
Feeling well, apart from the eye problem and swimming every other day, climbing the hills with no difficulty. Learning a new language after years of brain fog. Touching wood, it looks like there is a definite hope for a real cure.

Hi Asklipia,
1. which of your symptoms were relieved by the MK4 ?
2. Bains derivatifs : interesting! will give it a go. Have you ever tried the gel pocket (perhaps wrong trnslation from the french - poche de gel) ?

 

[Asklipia]

Hi Hanna,
1. The MK4 is a glutamate scavenger and immediately resolved excitotoxicity problems. It also strengthened areas where is was getting osteoporosis. No more pains in articulations or in muscles, no more problems with thyroid. Smooth skin!!!!!! I stopped waking up in the night and sweating. It was like sudden happiness. Cool feeling, cool heart. I looked 10 years younger from week one. OI and falling down when tired did not happen anymore. That took a year. Everything was getting better and better all the time, except my vision. I could not tolerate more than 15 mg a day for at least a year because I was feeling vaguely nauseated if I took more. Also getting strange zits on meridian lines. It has to be taken with a lot of fat otherwise not absorbed properly.
Not all MK4 are created equal. Because it needs fat to be absorbed, some brands are adding hydrogenated oil, and this tiny amount immediately gives me excitotoxicity symptoms again, just like MSG. Or it is just less effective. Destroyed by light but not by heat. The Glakay cannot be split because it is in a very small capsule with oil inside.
MK4 should not be taken by those on anti-coagulant medication (Warfarin etc).
MK4 competes with CoQ10, and from what I understand can do what CoQ10 does (or be transformed into CoQ10?), but the reverse is not true. So I suppose if you take CoQ10 you are depriving yourself of these extra benefits that come with what MK4 can do. Both require the same thing from the body, so they deplete this and if you take one, taking the other seems useless.
I am not a scientist and cannot really justify any of this. Painful trial and error on myself!!!!
2. Bains Drivatifs. The gel pockets don't work so well, only if you have done it with water and you watch TV and want to prolong the effect. CAREFUL in the beginning!!!!! It is very powerful.

 

[Hanna]

Thanks a lot for al the info!

 

[froufox]

Thanks Asklipia, yes I had seen your post on this thread and i'm glad to hear that those 2 things have helped u so much! I take MK7, and initially i had pretty good benefits from it....clearer head, better mood and more energy...then they seemed to wear off somewhat but I have continued to take it....not sure what it is doing now but I felt it was a good thing to take. Ive never tried MK4, but I do want to try it to compare with the MK7...I know that they work differently and that MK4 provides different and possibly more benefits. Hope u continue to improve!

 

[ruben]

hi there, could someone explain just what MK4 and MK7 is. Drug or supplement. Where can it be obtained and what is the cost? Also I've tried acupuncture and herbs with some good effects.
Has anyone though had good benefits from acupuncture alone and no herbs with it. I say this because there are quite a few practitioners near me who do only the acupuncture. thanks in advance. ruben

 

[Gavman]

Its kind of one treatment together, working on the methylation cycle.

b6/zinc - helping dreams (processing stuff during sleep), and helping get a deeper sleep. Don't need so much sleep now, 12 hours dropped to 8-10.
SAM-e (TMG, l-methionine) - helped me half my dose of effexor and still have energy, which was the main concern. Improved energy probably 50%

I think % relies on what the treatment does, rather than an overall %. Overall maybe 20% improvement and climbing.

 

[underdog]

Thanks for posting your experiences.
It was great reading all posts. I understand that isolating single treatments is an oversimplification and that different treatments seem to work for different people. Nevertheless I found it very interesting and learnt new things also.
I thought that it would help having replies structured in a way that the essence of the treatments stands out and estimates of improvements are more comparable. I'm putting together a spreadsheet which aims for that.

 

[ChrisD]

1. Paleo diet helped reduce Fibromyalgia to almost nothing, Ketogenic diet is definitely helping ME, particularly PEM reduction. Maybe a 5-10% improvement (I've got high expectations!)
2. Bravo Probiotic yogurt; I harp on about it on these forums but it is by far the most effective of all the standard probiotics that I have personally tried. I feel more resilience when I am using it, especially with Ketogenic diet, flares are more sporadic and triggers cause less of a problem.

So a total of 10-20% improvement with these things... I shall just keep going with them!