Who are the 10% that get better

[gregh286]

@gregh286 which exact brand of amino acids do you buy ?

Diet PhD.
It's the most packed with aminos.
Diet to keep sugar intake low
There's a chocolate orange one...it's lovely tastes like Terry's chocolate orange....if u ever had it

 

[2kidswithME]

@nikefourstar my children seem to have recovered after 6 years for my son, he's now been well for about 6 years, and after about 3.5 years for ny daughter, she's now been well for about two years.

Are they 100%? Maybe not, but at 90% they can get on with life at university. Will they relapse later, who knows, but for now they are enjoying making up for some of the lost years. Time will tell, they are reasonably sensible young adults, so I have to leave them to it.

What interests me is that they both had the same illness pattern, although slightly different mix of symptoms and severity, so whatever they had it was likely the same illness. And they were among the lucky few to recover. We didn't do any supplements, only sensible pacing, no magic bullets I'm afraid!

 

[Dechi]

Diet PhD.
It's the most packed with aminos.
Diet to keep sugar intake low
There's a chocolate orange one...it's lovely tastes like Terry's chocolate orange....if u ever had it

@gregh286 I am tryng to find it on amazon.ca.

Is this it ? https://www.amazon.ca/PhD-Amino-Acids-Nutritional-Capsules/dp/B002F5EOL4/ref=sr_1_1?ie=UTF8&qid=1484688464&sr=8-1&keywords=Phd bcaa

 

[BBB]

Dear Nikefourstar, It's hard to give any useful response because I don't know the whole story.I have FMS for 20 years and I am almost normal now and pain free. My son has CFS for 10 years and he is still quite sick
How old are you? Have you been diagnosed by a real CFS/ME doctor? Where do you live? Have you been tested for
viruses, parisites lymes and other chronic illness that cause fatigue? What treatments have you tried? Have you applied for disability?
check out online resources like this one. there are many useful treatment plans.
http://www.healthrising.org/forums/...hronic-fatigue-syndrome-and-fibromyalgia.171/

 

[nikefourstar]

I'm 26 no I haven't got a diagnoses yet but I have had testing to rule out a lot of other illnesses. I'm pretty moderate to severe how I don't leave my bed all room only to eat sometimes I live near Philadelphia. I'm really scared I think that I'm getting worse I had a doctors appointment yesterday the whole trip was about 3 hours now I feel like total shit today

 

[Dechi]

I'm 26 no I haven't got a diagnoses yet but I have had testing to rule out a lot of other illnesses. I'm pretty moderate to severe how I don't leave my bed all room only to eat sometimes I live near Philadelphia. I'm really scared I think that I'm getting worse I had a doctors appointment yesterday the whole trip was about 3 hours now I feel like total shit today

@nikefourstar I have found this med that helps me a lot : nimodipine or nimotop. I made a post about it, you might want to check it out. Who knows, maybe you're among the ones who might be helped by it.

 

[ash0787]

Thats a really good question especially at this point in time, the 'psychobabble crowd' seems to rely on what I suspect are false statistics that a large percentage say 30 or 40 % can recover entirely within a few years if you follow their CBT, GET whatever.

I heard stories of people saying they recovered or had relapses and its often described in terms of like '75% back to normal', I don't quite get what they mean by that though since you either have PEM or you don't,
perhaps the best person to ask would be a specialist CFS doctor that oversees large numbers of patients and often refers them to researchers, theres a few in the US but I forgot the names, they would diagnose people using the strictest possible criteria, and if people were recovering completely after a few years, they would be the ones that would notice.

 

[nikefourstar]

I would really like to know if I had even a chance of recovering or even if I couldn't do anything but just hangout and not feel totally horrible that would be acceptable. I can't be in bed everyday for the rest of my life I'm so young, I was a promising artist

 

[ash0787]

Just reading your original story, its kind of odd but also interesting, did the doctors tell you what may have caused the acid problem ? CFS is known to affect the stomach and one of the first major symptoms I had was a sort of heartburn type pain around the diaphram area. Whether cfs is caused by something changing in the stomach we don't know yet, its one area of speculation, but I guess its possible that the same pathogen which may have caused the changes to your stomach function could have also triggered CFS ( a defensive reaction from the immune system ).

Just doing press ups wouldn't necessarily be enough to trigger PEM if you had mild CFS

 

[nikefourstar]

I don't think I have mild at all, and since posting that I have less strength in my arms and legs I can't do them with ease anymore I'm getting very weak. The one thing knock on wood that I don't have that bad is finding words or reading for longs periods of time. I mean I have been reading like 8 hours a day on trying to figure out what the hell ks wrong with me or if my life is completely over

 

[ash0787]

I don't think I have mild at all, and since posting that I have less strength in my arms and legs I can't do them with ease anymore I'm getting very weak. The one thing knock on wood that I don't have that bad is finding words or reading for longs periods of time. I mean I have been reading like 8 hours a day on trying to figure out what the hell ks wrong with me or if my life is completely over

so you can't walk anymore even though its only been 2 monthes since onset ? how about other common symptoms like POTS and orthostatic intolerance ? can you stand up for most of the day on a good day ? how much variation is there in your symptoms, mild cfs was very cyclic in my case.

Have you rules out ongoing infections, nutritional problems secondary to your acid issue etc ?

 

[nikefourstar]

I can walk but it doesn't feel good at all my legs and arms feel like jello

 

[ash0787]

I can walk but it doesn't feel good at all my legs and arms feel like jello

have you tried measuring heartrate ? any difference in awareness when standing ? most cfs people lose alertness and ability to concentrate when they stand up for too long at certain times, for me this used to happen almost everytime I went for a walk outside.

Its normal for your entire body / muscles etc to feel completely different to normal when you have cfs, you can feel a bit unsteady on the feet and you feel lactic acid aches constantly, it varies over time though, sometimes your body can feel 'nearly normal' but not quite, you always feel slowed slightly, I can still use a burst of energy and not fall over though, I could probably still win a fight against someone if they were not too strong but the fight would have to be over within 10 seconds or I would be completely exhausted.

Ruled out common diseases that could cause that level of fatigue / debilitation ? had xrays or whatever they do to check for cancer ? how many different doctors you seen / hospitals visited ?

 

[nikefourstar]

I've seen a couple doctors gotten blood work and stool sample tests so I'm like almost positive I don't have cancer or anything like that. But if I am declining this fast then I'll probably be unable to speak within a few months like some of the severe ill

 

[ash0787]

I've seen a couple doctors gotten blood work and stool sample tests so I'm like almost positive I don't have cancer or anything like that. But if I am declining this fast then I'll probably be unable to speak within a few months like some of the severe ill

I think those cases are rare, the only one I'm familiar with is whitney defoe and I think it took years for him to get to that stage. I got pretty bad at one point but it didn't last too long and was entirely caused by actions that I took as far as I could tell, could still talk at that point too.

If you feel that way thought it might be a good idea to start looking for a doctor that specializes in diagnosing CFS.

 

[Sushi]

perhaps the best person to ask would be a specialist CFS doctor that oversees large numbers of patients and often refers them to researchers, theres a few in the US but I forgot the names, they would diagnose people using the strictest possible criteria, and if people were recovering completely after a few years, they would be the ones that would notice.

This sounds like a good idea. At the moment it seems you are just speculating without enough medical backing.

I've seen a couple doctors gotten blood work and stool sample tests so I'm like almost positive I don't have cancer or anything like that. But if I am declining this fast then I'll probably be unable to speak within a few months like some of the severe ill

Again, that is speculation without basis. Most doctors you are likely to see (unless they specialize is diseases like ME/CFS) will not do the tests that might reveal what is really going on.

 

[nikefourstar]

This sounds like a good idea. At the moment it seems you are just speculating without enough medical backing.
Again, that is speculation without basis. Most doctors you are likely to see (unless they specialize is diseases like ME/CFS) will not do the tests that might reveal what is really going on.

I don't even know how it would be possible to have the Pem and weakness that I have without having cfs. What other disease out there would cause me to be this weak

 

[Sushi]

I don't even know how it would be possible to have the Pem and weakness that I have without having cfs. What other disease out there would cause me to be this weak

That's the point. You need some good medical input. A good doctor could answer that question.

 

[gregh286]

@gregh286 I am tryng to find it on amazon.ca.

Is this it ? https://www.amazon.ca/PhD-Amino-Acids-Nutritional-Capsules/dp/B002F5EOL4/ref=sr_1_1?ie=UTF8&qid=1484688464&sr=8-1&keywords=Phd bcaa

No
This type
https://www.amazon.ca/gp/aw/d/B014M...s=Diet+phd&dpPl=1&dpID=41NAnylJ7RL&ref=plSrch

 

[Ambrosia_angel]

I recovered but now I'm starting to doubt whether I had ME to begin with

My current symptoms and bloodwork aren't in line with it. Or maybe I had ME then and something else now? Either way my muscles have always been weak from my previous onset but now swelling and stiffness in the muscles not joints? Confusing

I recovered using methylation, diet, because I'm considered child onset and recovering early.

Stay strong. If you are still in the early stages then it's positive that you've found the site so soon. Now you can look at treatment options and possible causes of your symptoms.