False Hope on Recovery

[amaru7]

Dr. Hyde is a good doctor and if he diagnosed you, you have it.there's a reason why he doesn't do treatment, he thinks there not many who get better with treatment. Still every case is different to another, so me is not me. For me personally the issue is mitochondrial, so I go with Dr myhill. You might check her website, she gives all the information there.

It's a bad disease that does actually ruin lifes for many, and the first step is learning acceptance for you. It took me more than 15 years and still I've not managed to accept my disability totally, so I know this will take time in your side, but one thing is for sure-you have to learn it.

I'll try some treatments but as I hope for the best, I'm prepared for the worst.

Best wishes
You're not alone in this mate

 

[Cheesus]

Yet I think a good many patients do recover early on. That is the best time. After 5 years it appears recovery is low. We now suspect that the biochemistry changes at about the three year mark, this might have something to do with it.

I'm still in that golden phase, just short of two years ill, but only just over a year and a bit since being actually debilitated and having to leave work. I have seen a number of your posts on the forum and I can see you are something of an ME Master (think Jedi but with more lying down). As such, I am keen to know what advice you have for newbies like me?

 

[alex3619]

Learn to pace. I wouldn't say I am a master, but I have been doing this a long time. Then again, maybe that is what a master is, and if so there are a few of us. Jedi meditate, so why can't we lie down a lot?

The more you stay within your energy limitations, the better you will be. This does not mean full rest all the time, but it does mean you cannot push. Every time I pushed myself I got worse. Not pushing gives you the maximum chance I think. If you are breathing hard, you are doing too much. If you feel worse after doing something, particularly the next day, it was too much. Respecting your own limitations, which are unique to you, will be a good thing even if it does not lead to full recovery, as it will lesson the risk of a decline. Pacing sounds easy but it isn't.The temptation will always be there to do too much, and a lot of the time it will seem as if you have to do more.

Find out what diet works best for you, something healthy of course. You have to eat anyway.

Pacing and diet are low cost, unlike doctors or expensive medications. Whatever else you can do you can probably do these two things.

If you can afford it, and can travel, go find a really good ME doc. There are not many around.

There is a chance you do not have ME anyway. Very few clinicians are reliable at diagnosing it. I am not even convinced Dr Hyde is reliable except in this sense: if he says someone has ME he is most likely right. If he says they do not then he could still be wrong. We need fully validated biomarkers. There are quite a few being investigated, and at least one looks very promising. Not having ME can be a good thing, as the odds are that recovery will be easier.

Severe post viral fatigue for example can take years to recover from. It does not always lead to ME. Yet in time these patients make full recovery.

Finally, keep learning. The antidote to badly informed doctors is well informed patients.

 

[Thomas]

Thanks everyone for the replies. @Sushi Dr. Hyde doesn't treat but I knew that going in - he's excellent for information and knowledge on ME and he's been very helpful for my disability process. As for treatments I've already done Valtrex, GcMAF, a fecal transplant, Rifaximin, Chelation and several other things without much success.

I guess everyone is different. And so far I've really sucked at pacing which I guess hasn't helped things.

@alex3619 it's possible I may not have ME but I'm pretty sure I don't just have a post viral syndrome since my clinical and symptomatic picture is a lot different from a regular post viral syndrome that seems to generally improve slowly over years without severe cognitive problems and relapses. Furthermore, my ME started after a flu vaccine and I have several other comorbitities such as hypermobility, OI/POTS, depression/anxiety, and life long IBS - which seems to be more of an "ME" type picture - at least in my opinion.

At this point I'm not really sure what to do. In fact, I don't even have the energy to pursue new things - just the basics are tough enough at the moment. I hope that some new energy is around the corner to help motivate me to try new things and perhaps see another doctor. Anyone hear anything good about transcranial magnetic stimulation? I know Dr. Bradstreet is very big on it these days...

Also, can things progressively get worse at the beginning and then turn a corner after a few years?

 

[Charles555nc]

Unfortunately there are many costs and waiting times for Lyme Literate or CFS Literate doctors. CFS can have bacterial issues and Lyme disease patients can have viral issues, so get the usual suspects checked out, epstein barr, lyme, mycoplasma, c pneumoniae, cmv, bartonella are the first to come to mind.
(As you can guess Ive seen lyme and cfs doctors and was positive for XMRV)
Heres what worked for me in my case:
http://forums.phoenixrising.me/inde...iate-improvement-with-arvs.30010/#post-458836

 

[Little Bluestem]

...
And so far I've really sucked at pacing which I guess hasn't helped things.
...
At this point I'm not really sure what to do.

You might focus more on that pacing. It doesn't do a lot on it's own, but I think it likely that nothing else is going to do a lot without it.

 

[Ambrosia_angel]

Greetings friends,

I've been sick for almost 3 years now with classic ME (diagnosed by Dr. Hyde). Although I had "minor" type pre-ME symptoms for a few years before my sudden onset. Anyways, I try and keep the hope alive that I (and we) can get better and even see a substantial recovery over time, but the truth is I have been in steady decline since my onset.

At the beginning I was still able to work and live a semi-normal life. Now I am almost completely housebound and require assistance with daily living. Thank god I have parents that help me out (I'm 35 years old) even though I hate being dependent on others as I'm sure we all are.

Dr. Hyde keeps telling me that people do and can get better but I am finding it hard to believe anymore since I keep slipping. And the internet is filled with people who have been sick for decades and most recovery stories are dubious at best.

This illness is so complex and disabling and I understand everyone is different, however I'm trying to keep the light alive during these dark times - just finding it more and more difficult to do so as I've lost so much because of this wretched disease (as I know all of you have as well). I'm just not sure if I should expect to never recover and continue to deteriorate and just hope for the best, or if in fact recovery or substantial improvement is actually a realistic possibility.

Thanks for your time and any thoughts/suggestions.

Cheers,

Thomas

I think the best thing to focus on is improvement and not recovery. When I first can down with ME I went from going out every day to being homebound overnight and was so overwhelming especially when I was search all over the internet trying to find cures and seeing that recover is so small. I thought I'd be like this forever.

But like others have said most who do recover don't post as they are living their life and a online community isn't their only source of socialisation and support like it is for many of us.
I've been 90% bedbound and regressing for a long time but after being in so much pain and so weak, I'm making small but amazing improvements. Being able to stand for 30 minutes with little pain is such a big achievement for me but I'm not recovered. I'm just small improving and it feels great. It can feel like you'll never get better when you regress and there's so much uncertainty because nobody really knows the cause and not all of us can have access to the treatments people on here have. BUT there are ways and sometimes it takes a little experimentation to find them. Don't give up

 

[amaru7]

Thanks everyone for the replies. @Sushi
Also, can things progressively get worse at the beginning and then turn a corner after a few years?

Yes I heard about cases that develop exactly just like this, so yeah while I cannot say if this will be the case with you, I can tell you that it happens