No reactions or effects, good or bad, from anything?

[RobeAnJa]

I got covid in April. I have POTS now and something has gone seriously wrong in my metabolism. I’m losing all my body fat and muscles are wasting away far beyond normal for my activity level. I am able to go for gentle walks outside for 25-40 minutes, and even do some light exercise every day. It does not help. I don’t have brain fog but the POTS and my muscle weakness limit me very much. I have some kind of neuropathy in my feet and I don’t sweat there any more.

Since getting sick I have tried two different diets and many supplements. I see a ME/CFS doc who has given me a couple of medicines and supplements. Nothing is giving me any reactions or effects at all. I read here about people being very sensitive and starting low dose of everything but having to stop before reaching normal dose. The same thing is common among covid long haulers. But for me, nothing is happening, good or bad.

So far I have tried this (not at the same time):
Keto diet
Low histamine diet

D-ribose
NAC
ALCAR
B-12
L-proline
Alpha lipoic acid
Conjugated linoleic acid
Collagen
L-glutamine
Ashwaganda
L-theanine
Magnesium
Copper
Quercetine
Vitamin C
Vitamin D
Niacin
Spermidine

Bisoprolol
Mirtazapine
Melatonine
Desloratadin
Pepcid

The only thing I have noticed an effect from is the beta blocker Bisoprolol. It lowers my heart rate and make me feel a little better overall.

I’m thinking about stopping all supplements. But at the same time I want to keep trying, I hate my new life and searching for something that makes me feel better is all I do now.

Is it common to not respond to anything like this?
What should I do?

 

[jaybee00]

Unfortunately there is no FDA approved treatment for MECFS. For POTS/cardio symptoms maybe mestinon.

https://www.s4me.info/threads/event...ent-date-may-5th-2020-david-systrom-md.14987/

 

[RobeAnJa]

Unfortunately there is no FDA approved treatment for MECFS.

Yes, I know this. I was wondering if it is common to have no reactions at all to anything. I’m not thinking anything on my list is a cure.

 

[Wishful]

Is it common to not respond to anything like this?

I don't know how common it is, but I think it's fairly common. I've tried lots of things that had no noticeable effect. Some people talk about treatments that take months to show an effect, but all the things that have affected my ME have done so within a few days, and most of those within one day.

If you've already paid for a bottle of some supplement, and it doesn't cause worse symptoms, you may as well keep taking it. I wouldn't bother buying more just because you don't know 100% for sure that taking it for 3 more years (or whatever length of time) won't provide a benefit. If the first bottle doesn't have an effect, it's unlikely that more will help.

 

[dave11]

I’m losing all my body fat and muscles are wasting away far beyond normal for my activity level.

Link for PR forum information on weight loss with a normal appetite:

https://forums.phoenixrising.me/threads/weight-loss-and-me-cfs.81772/#post-2303462

 

[leokitten]

Yes, it is common to have no benefits from anything. I also had a similar very rapid subcutaneous tissue loss and muscle loss in the beginning even which exercise and strength training suddenly didn’t have any effect on.

 

[xebex]

Most things I take have done nothing or made me feel worse. The only thing that’s given a noticeable effect for me is magnesium malate for restless legs (makes no change to my ME). PQQ give me some additional energy for a couple of months then stopped working. NAC has fairly consistently helped with the toxic feeling I have.

What I have recently found helpful is giving up caffeine, my histamine issues disappeared within a week. It turns out caffeine can block DAO enzyme and it blocks other nutrients especially iron.

I refused to believe caffeine could be detrimental for YEARS finally I gave it up basically to see if it would do anything. I do think caffeine can be helpful and I have felt more lethargic since stopping it but I’m grateful for the lack of histamine issues like silent migraines, weakness, and sinus pressure . It’s always a trade off.

 

[RobeAnJa]

I also had a similar very rapid subcutaneous tissue loss and muscle loss in the beginning even while still trying to exercise.

Did this stop? Do you have any problems with your connective tissue? Thin skin? Loose joints?

 

[leokitten]

Did this stop? Do you have any problems with your connective tissue? Thin skin? Loose joints?

Yes it did stop or slow down a lot once there wasn’t much more subcutaneous tissue to lose anymore. Muscle loss and softening continued at a much slower rate over the years but confounded by lack of exercise. My joints got more flexible in the beginning but in my particular case not something as significant as I’ve read about others. Skin feels and looks much thinner and just different after subcutaneous tissue loss, feet and hands show the most change. They are just looser skin and bones now.

 

[leokitten]

There are a few threads that have popped up over the years regarding this phenomenon (search titles for subcutaneous or other keywords), here was mine from 2013:

https://forums.phoenixrising.me/threads/fairly-rapid-tissue-and-muscle-wasting-during-disease-onset.26058/

 

[Wishful]

I refused to believe caffeine could be detrimental for YEARS finally I gave it up basically to see if it would do anything.

Yes, the things you are convinced that aren't a problem, but which really are, can be a problem. These reactions also change with time, so what you've verified as safe at one time, may not remain safe, so you should retest occasionally. You may lose sensitivity to the things on your 'avoid' list as well, so if it's something you really enjoyed, you may want to check that occasionally too.

 

[leokitten]

I refused to believe caffeine could be detrimental for YEARS finally I gave it up basically to see if it would do anything. I do think caffeine can be helpful and I have felt more lethargic since stopping it but I’m grateful for the lack of histamine issues like silent migraines, weakness, and sinus pressure . It’s always a trade off.

For me the downside of caffeine is that it gives me “fake” energy, so I want to exert much more and then easily overexert and the resulting downfall, especially if I drink it every day to do more.

 

[Wishful]

Caffeine never gave me extra energy, fake or otherwise. Really strong coffee would make me jittery, but not feeling like I wanted to do more activities.

 

[Wishful]

So far I have tried this

One thing about supplements and other treatments and dietary regimes: most of the health claims for them are meant for people without ME. Whatever theories their claims are based on may not apply for people with ME. Various processes in our bodies are working abnormally, and we don't know for sure which are causing ME symptoms and which are just byproducts of having ME. This means that it's quite reasonable to not notice results that the marketers claim for a product. If it's something that another PWME says works for them, that doesn't mean that it will work for you, since we all seem to respond differently to things. I've had several things that worked really well for me, but haven't worked for anyone else.

Another problem is that product claims may not apply to ME. A product may claim to 'reduce fatigue', but what is 'fatigue'? We don't have a clear definition of that word. It has several vague interpretations. PWME seem to have central fatigue, and some may also have physical fatigue or mental fatigue that isn't central fatigue. Even the processes behind central fatigue may vary between individuals. So, a product that does reduce physical fatigue in a normal, healthy individual may do nothing to reduce the feeling of fatigue that you experience.

In my experience, treatments based on theories, or treatments based on other people's experiences, only slightly improve the probability that the treatment will work for you. A number of people here reported good results from BCAAs, so if you're looking for things to try, that's a slightly better choice than a treatment intended for itchy scalp, but both have only a tiny chance of being effective for you as an individual with ME. I've had better luck by just paying attention to unexpected improvements, and then trying to figure out what was responsible for them. Trying lots of different foods, supplements, and other things with potential biological effects just increases the chance of encountering something that will unexpectedly help.

Of course, other people here prefer the 'exhaustive testing and trying treatments based on the results of those tests' process. I don't get the impression that their overall improvement is any greater than mine, but if that process makes them happy or satisfied, I certainly won't say that it shouldn't be followed.

Oh, one other thing: time frame. You haven't found anything that helped in 8 months. It took me several years before I found something (rotation diet) that qualified for 'significant improvement'. I think it was around 10 years that I found my second thing that helped, and another 5+ years before the next. So, finding things that work for you can be a slow process. Not finding something that works well enough to make a difference in the first year is in no way surprising.

So, for your question of "What to do?", I suggest keep trying and don't lose hope. It is possible to find things that make a big difference in your quality of life with ME. In my experience, it takes time and good luck. If anyone figures out how to reliably improve luck, please let the rest of us know.