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Poor sleep quality is associated with greater circulating pro-inflammatory cytokines and severity

Seven7

Seven
Messages
3,444
Location
USA
I am 100% sure that inflammation will cause the not sleep in my case.

I was not sleeping for 2 weeks about went crazy. The sleeping pills did nothing even at a redicoulus high dose. I went to sleep doc, GP, neuro. And they did nothing for me.

My Cfs doctor said ahhh your inflammatory cytokines are so high your brain is just reciving messengers and cannot turn off ( blood work confirmed this )

I got antiinflamatoris ( on top of my regular sleep med dosis) and 2 days later I could sleep again. I discover my allergy to mushrooms that was causing the issue inflammatory process.
 

Molly98

Senior Member
Messages
576
it feels ridiculous - I have a big bag I keep in the bathroom just for sleep! and a much bigger bag of other things to help me in various other ways. I'm currently tapering off of lorazepam which I took in the middle of the night (my worst time) for sleep and with the help of my nighttime bag 'o pills, am managing it.
:rofl::rofl: that just reminds me @Mary, the other day when I went for a hospital appointment I couldn't help but laugh at the amount of stuff I have to take with me just to leave the house: wheelchair, wheel chair rain cover, water bottle, bottle with protein shake for if I start to crash, protein bar, painkillers, other medication, dark coloured glasses because I am light sensitive, ear plugs, a hat so the light can't get in above my glasses, kindle and earphones with soothing nature sounds if stimulation becomes too much. Neck cushion, back cushion, little cushion, blanket for in the car, it's ridiculous it's like when my daughter was a baby, even then I don't think I had to carry so much stuff around.

And on the very odd occasion when I have had medical appointments where I have had to stay overnight, like you there is a whole bag or two of medication and supplements. I am like a bag lady, well no I am a bag lady.
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
:rofl::rofl: that just reminds me @Mary, the other day when I went for a hospital appointment I couldn't help but laugh at the amount of stuff I have to take with me just to leave the house: wheelchair, wheel chair rain cover, water bottle, bottle with protein shake for if I start to crash, protein bar, painkillers, other medication, dark coloured glasses because I am light sensitive, ear plugs, a hat so the light can't get in above my glasses, kindle and earphones with soothing nature sounds if stimulation becomes too much. Neck cushion, back cushion, little cushion, blanket for in the car, it's ridiculous it's like when my daughter was a baby, even then I don't think I had to carry so much stuff around.

And on the very odd occasion when I have had medical appointments where I have had to stay overnight, like you there is a whole bag or two of medication and supplements. I am like a bag lady, well no I am a bag lady.

Wow - I cannot imagine having to take all that for one appointment - I agree, it's like taking a baby somewhere, only more things to take! But I do totally relate to the bags of pills - it's absurd, but it keeps me semi-functioning. My brother complained once about the amount of supplements he was taking - maybe 6 or 7 - I wanted to laugh - that would just get me warmed up for the main course of pills. Someday this will all be like a bad dream I think --
 

Kati

Patient in training
Messages
5,497
Fixing the sleep is not going to cure this disease. Sleep hygiene (a form of behavioral therapy) is over-rated.
Drugs will help out in getting a better night of sleep, but the disease is still there.
 
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perrier

Senior Member
Messages
1,254
I take LDN, Immunovir + inosine ( I cannot tolerate the full dose of Immunovir, so I added inosine), equillibrant for coaxaxie.

Vit D for my low levels.

Then the regular things everybody gets: high Vit C+ coq10+fish oil
And do you find that the flu feeling is down?
 
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Seven7

Seven
Messages
3,444
Location
USA
And do you find that the flu feeling is down?

My daughter is going around the bend with the flu feeling, two solid months now.

She was, some time back, on immunovir and it didn't seem to do much. She was on tiny dose of LDN too, and it didn't do much.

She is so reactive, that she can only tolerate a mouse's dose. Once she raises doses she gets sick, rather than getting relief.
I was the same why my immune system was so reactive. No more flu feeling for me in a while. I can even do Vit d without the flu feeling. I haven't venture on Zinc but that makes me fluish too.

My doctor told me you didn't get like this on one day so you will not be ok in one day. It took as long as I was sick to level for me ( 4 years or so) so it is a slow process but well worth it.

Imunovir and LDN were a journey. Immunovir i would do better off it thAn on it but they told me to hang in there I am happy I did.

LDN made me sleep for 3 days Streighh took me 2 years to work my dose to the 4.5mg. I even gave up and Sushi I remember told me to hang in there and I am happy i did. I crash faster now when off it.

The immune stuff was slow not like w energy supplements I could tell immediately what will work. But I was checking my immune numbers and my CBC looked better and better. The cytokines are still a mess and NK would go up and down but at least I was progress why I kept on them.
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
Can you explain what effects you're getting from inositol? :) Just sleep help, or does it seem to affect anything else?

The only difference I noticed with the inositol was that it helped with sleep, and no bad side effects. However, my sister started taking it for general stress issues and likes the way it makes her feel calmer, she got a friend taking it and her friend loves it too. They take it during day, I think 500 mg. 2 x.

FWIW, I got all the way off of lorazepam in late February and over the next several weeks my sleep got worse and worse, such that my sleep cocktail no longer did the job. I then read it might be better to try to lower glutamate rather than increase GABA, so started taking calcium pyruvate (which helped the first night I took it) and then some days later added in resveratrol, which also was helpful, and cut out the l-theanine. However, now something is leaving me dragging and tired and feeling flat, though I'm sleeping better, so now have to tweak this ... I'm going back to just the calcium pyrurate because I seemed to do okay on it, and maybe the resveratrol was overkill. I don't know if you're interested in any of this, but there it is anyways :rolleyes: BTW, do you have any thoughts on whether it could be the resveratrol or calcium pyruvate causing this fatigue and feeling flat, and by what process either (or both together) could cause this? Maybe my glutamate going too low? Any ideas you may have would be appreciated! :nerd:
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@Mary; pyruvate seems like a brilliant plan and I can't see anything wrong with it. Resveratrol is in my pile of don't-take supplements, which means that it either did me no good or made me feel worse. Unfortunately, I don't recall which!

I'm interested in inositol rn, but especially because it was one of those things that made me feel distinctly worse, but other patients use it. I find that quite interesting. :)

Lots of variables, though -- could it be cutting out the L-theanine that is making you feel exhausted? I always shift one supplement at a time. It can be really tough to tell what's going on otherwise. :(
 

Mary

Moderator Resource
Messages
17,385
Location
Southern California
@Mary; pyruvate seems like a brilliant plan and I can't see anything wrong with it. Resveratrol is in my pile of don't-take supplements, which means that it either did me no good or made me feel worse. Unfortunately, I don't recall which!

I'm interested in inositol rn, but especially because it was one of those things that made me feel distinctly worse, but other patients use it. I find that quite interesting. :)

Lots of variables, though -- could it be cutting out the L-theanine that is making you feel exhausted? I always shift one supplement at a time. It can be really tough to tell what's going on otherwise. :(

Thanks @JaimeS! Last night I cut the calcium pyruvate in half and didn't take any resveratrol, and feel better this a.m., though still a bit extra tired and woozy, but way better than yesterday. Dang - just when I think I have things nailed (e.g., insomnia), I get hit from another direction! :bang-head:

You're right of course, to try changing only one thing at a time. Usually I'm pretty good about that, but I was so desperate to sleep, threw caution to the wind. I also cut out calcium at the same time (supposed to transport glutamate into the brain) but I think the combination of everything was too much .....

Interesting that inositol makes you feel worse - for me it was one of the milder things, didn't affect me much, but what it did do was only good ..... hmmm.... we are all so different, and yet so much the same! :sluggish: