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What Has Helped My ME/CFS

Inner Circle Member Forum >> General Discussion >> What Has Helped My ME/CFS

alicecav

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Posted: 6/16/2018 2:17:15 AM
 
On another thread, Iconnolly asked me to post on what has helped my ME/CFS.

The single most important thing for everyone with the condition is not to exceed one’s individual energy envelope. Determining these limits and recognising when they are being exceeded is not always easy, but, in my case at least, I can usually gauge by how I feel if I am pushing myself too far. Some people use things like heart rate monitors to help with this.

This is important because one of the hallmark elements of the disease is so-called post-exertional malaise (PEM). It’s not a completely satisfactory term and others have been tried - eg post-exertional neuroimmune exhaustion (PENE). What these terms are trying to convey is the disproportionately adverse consequences of exertion, be it physical, mental or emotional. There is great individual variation - for some, all types of exertion act as triggers, for others, one may be far more important than another. The extent of exertion necessary to trigger a response also varies greatly, but usually it is a relatively small amount, sometimes such a tiny amount that the person remains bedridden.

The consequences of exceeding one’s limits are global - all the symptoms plaguing an individual get worse. This is not exercise intolerance. The only solution is rest - rest till the symptoms subside, then more care to rest regularly and not push the boundaries too much. Those promoting graded exercise as a solution are actually causing serious harm.

Then there are things that help some individuals but not others.

For myself, the single most helpful thing has been low dose naltrexone (LDN). I’ve been taking it for more than two years and it helps greatly with orthostatic intolerance/autonomic instability, with PEM and to a lesser extent with muscle pain and sleep (the two latter things are much less troublesome to me than the former and magnesium is by far the best thing for both). It does nothing for fatigue and brain fog.

The other really helpful strategy, at least until mid last year, was various supplements boosting energy pathways such as B vitamins, ubiquinol, carnitine, R-lipoic acid, creatine, D-ribose - but especially high dose folate, B12, B1, B2 and biotin. These definitely helped with fatigue and brain fog. 

This approach fell apart I’m pretty sure as a result of my thyroid hormone experiment (which also helped with fatigue and brain fog for a while). Eventually I had to give both away - I simply couldn’t tolerate even small doses and my sympathetic nervous system seemed out of control again.

I tried increasing LDN - this did help but 5 mg seems my tolerable upper dose - but it took months before I emerged from an enforced hibernation/depression and had slightly more energy and could at least think things through a little. I’ve been able to reintroduce moderate doses of B vitamins and they still definitely help a bit - haven’t yet reintroduced the various other things but intend to.

I’ve reached some tentative conclusions about thyroid hormone too and what went wrong. I suspect I misinterpreted the feeling that I was running out of T3 and needed to increase dose - rather I was shutting down conversion because I was taking too much (not that I ever took more than a very modest dose). In any case I am soon going to try low doses of T4 and very small doses of T3. 

Although I don’t understand exactly how it worked I suspect too that the hypersensitivity and sympathetic overactivity had something to do with a topic I have just been learning about in the last few months -  increased tri-iodothyronamine (produced from T4) and it’s activation of the trace amine associated receptor and alpha adrenergic receptors.

A lot of people with ME/CFS seem to have some degree of hypothyroidism but my experience and that of others on forums I participate in suggests that dealing with it may not be straightforward. Still I think if I could work out an appropriate dose regimen for T3/T4, it would be helpful.

Many people with ME/CFS have tried various combinations of energy boosting supplements. Some aren’t helped at all, others have their own combinations they swear by. NAD+ precursors are a new buzzword but nicotinamide riboside does nothing for me and NMN and NADH are intolerable (I just stick to modest doses of niacinamide). Dichloroacetate is another that is being tried since there is evidence that pyruvate dehydrogenase is downregulated in ME/CFS and this substance indirectly stimulates it. Some report it to be very helpful. I have some in the freezer but haven’t recovered sufficiently from the thyroid hormone experiment to try it yet.

Another class of things that some find helpful is antivirals. I have never tried these since I don’t have the sudden onset usually post-viral version of the disease, and this is the group who most seem to benefit from these drugs. Mine was very gradual after multiple possible triggers, including some possible but by no means obvious infectious agents. To me, the metabolic trap/hypometabolic state hypothesis fits better with my experience.

There seems to be a small autoimmune subset and these people have benefitted from Rituximab and/or IV Ig.

Other than that, there are a myriad of things that people report to be helpful for various symptoms but all seem to be band-aids.

Nothing I have tried has done anything to arrest the course of the disease which, after a period of near remission, is now slowly getting worse.  

As I mentioned in an earlier post, the first iteration of the disease had some different symptoms (IBS, food intolerances, MCS) and various gut strategies were very helpful then, but they didn’t seem to alter the course of the disease either.

Happy to answer questions.

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Posted: 6/16/2018 8:48:04 AM
 
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Bob Niland

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Posted: 6/16/2018 9:04:24 AM
 
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Posted: 6/16/2018 11:12:20 AM
 
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alicecav

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Posted: 6/16/2018 5:30:32 PM
 
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Posted: 6/16/2018 5:54:03 PM
 
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alicecav

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Posted: 6/16/2018 10:57:12 PM
 
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Posted: 6/18/2018 10:49:46 AM
 
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Posted: 6/19/2018 10:15:47 AM
 
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Bob Niland

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Posted: 6/19/2018 10:44:59 AM
 
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Posted: 6/19/2018 8:13:06 PM
 
hopscotch:

Good to hear from you!  Yeah, that could be it.  I also did a cortisol saliva test and found my cortisol output is shifted about 8 hours.  Hmmm, might have to try that hydrocortisone trick!

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Posted: 6/20/2018 11:33:08 AM
 
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alicecav

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Posted: 6/20/2018 7:47:41 PM
 
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alicecav

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Posted: 6/20/2018 11:07:51 PM
 
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Posted: 6/21/2018 10:39:58 AM
 
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alicecav

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Posted: 6/21/2018 11:51:11 PM
Edited: 6/22/2018 5:30:55 PM (1)
 
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Posted: 6/22/2018 10:45:53 AM
 
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Posted: 6/23/2018 11:08:42 AM
 
Alice   I just tried to email you as you requested, and it did NOT go through.  Tried twice.


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Posted: 6/26/2018 7:47:23 PM
 
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Posted: 6/26/2018 8:05:54 PM
 
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Posted: 6/27/2018 5:30:10 PM
 
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Posted: 7/10/2018 9:26:29 PM
 
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Posted: 7/11/2018 9:09:12 AM
 
Alice - on my work computer (and not my home), only the first 6 posts show.  You need to click on one, then click "all posts" to see things. 

BTW, have you tried serum bovine immunoglobulins? 


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Posted: 7/11/2018 5:46:24 PM
 
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Posted: 7/12/2018 1:27:02 PM
 
Thanks for the blog link, lconnolly!  I’m gonna check it out :-)
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Posted: 10/16/2018 5:54:41 PM
 
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