What to do next?

[Wanja]

These are pretty much the same symptoms I have. Did they do a spinal tap to check for Pleocytosis or elevated protein?

Yeah they did a spinal tap and i think they checked for proteins, which marker would be relevant? i can check

What is Pleocytosis? Never heard of that

 

[crypt0cu1t]

Yeah they did a spinal tap and i think they checked for proteins, which marker would be relevant? i can check

What is Pleocytosis? Never heard of that

It's elevated whit blood cells in CSF. Was your protein high at all?

 

[Wanja]

It's elevated whit blood cells in CSF. Was your protein high at all?

which one is the marker for elevated protein?

 

[Mary]

@Wanja - I'm really sorry to hear all this! I did well with 5-htp for sleep but we are all different! It would be so much easier if the same thing helped everyone . . .

I have had good results with BCAAs - they've cut my PEM recovery time by more than half. Here's a post I did about them: What's your favourite amino acid? | Phoenix Rising ME/CFS Forums

If you read the first article in that post (A Brief but Updated Scientific Look at the "F" Word: Fatigue (ncf-net.org) you'll see it talks about tryptophan and BCAAs so the BCAAs might be worth a try, though I recommend starting low and going slow because unfortunately we can be quite different . . .

 

[Wanja]

@Wanja - I'm really sorry to hear all this! I did well with 5-htp for sleep but we are all different! It would be so much easier if the same thing helped everyone . . .

I have had good results with BCAAs - they've cut my PEM recovery time by more than half. Here's a post I did about them: What's your favourite amino acid? | Phoenix Rising ME/CFS Forums

If you read the first article in that post (A Brief but Updated Scientific Look at the "F" Word: Fatigue (ncf-net.org) you'll see it talks about tryptophan and BCAAs so the BCAAs might be worth a try, though I recommend starting low and going slow because unfortunately we can be quite different . . .

Ah ok thx! I mighr give it a try...
So i should probably not buy bccaa capsules but powder so i can dose lower?

 

[lenora]

You'll have to wait for the results of the AE panel. There is nothing that can be done about that....even in this country things like certain cultures can take weeks to grow and answers given. Try to be as patient as possible.

Does anything soothe you? If it's the 5-HTP, then the effects may wear off. The doctors sound as if they're doing all of the right things, I can't think of anything else. Can you walk for short periods of time, focus on anything at all (and by the way, it's not uncommon even after surgery to have problems with that), looking at a magazine filled with more pictures. It does take time for the brain to settle down again.

Would you be any better in your bed at home? I doubt it even though most of us are glad to be released from the hospital. But for now, I'd say you're exactly where you need to be. Feel safe there because you are. Yours, Lenora.

 

[Mary]

Ah ok thx! I mighr give it a try...
So i should probably not buy bccaa capsules but powder so i can dose lower?

You can lower your dose with capsules too - you can break them open. With the product I linked in that post, I was taking about 10 capsules a day - 2 capsules of the Optimum Nutrition brand equal 1000 mg so I've been taking 5000 mg a day in 2 divided doses (2500 mg (5 capsules) early a.m.. and 2500 mg. (5 more capsules) late a.m. on an empty stomach)

So one capsule would equal 500 mg., which is a pretty low dose for BCAAs.

I think this product is pretty good as well, though I prefer the Optimum Nutrition product: AmazonSmile: Nutricost BCAA Powder 2:1:1 (Unflavored) 90 Servings - High Quality Branched Chain Amino Acids: Health & Personal Care

I think the main thing is read the label carefully. People often write and say "I took one capsule" - well, that doesn't tell us anything unless we know how much is in one capsule. And also labels are often misleading - they'll say one dose = 1000 mg. but you have to read carefully to see that maybe, 2 capsules is considered one dose.

Anyways, I think either capsules or a bulk powder would work. Just read the label carefully so you know exactly how much you're taking.

 

[crypt0cu1t]

which one is the marker for elevated protein?

It's literally just protein, maybe we do it a bit differently here, but it should say protein and then give a level if it's high