PEM cut in half from veggies and meat

[Wishful]

It's been over two years and feels more like permanent damage to the brain .

I don't think that's a real concern with ME. My last temporary remission was after around 10 years of ME (and brainfog), and the brainfog simply vanished...and then returned with the rest of the ME symptoms. Thus it's a symptom of the state of ME, and disappears very rapidly if you manage to switch ME off.

 

[JES]

Yeah brain fog can resolve quite quickly, at least most of it. I had almost full resolution in 2014 and 2016 when I got hit with an acute infection of some sort, partial resolution with alcohol, sleep deprivation and partial resolution when starting certain drugs/supplements. 24 hours following onset of acute infection in 2016, I found it much easier to e.g. socialize with other people, it was like a switch had turned. I've experienced brain fog since 2007, so the second full remission for me also came almost ten years later.

 

[HABS93]

@JES @Wishful I don't even know if it's ME at all. That's part of the problem . I know CFS/me is very likely but I'm not 100% yet. Battled through sarcoidosis for the last year. Took meds that made my symptom's worse so I haven't noticed anything changed except for eating slot healthier. It makes it so work doesn't cause PEMs anymore. Which is a win but didn't affect the brain fog , eye distortions , so hard to describe like there's a lack of cerebal blood flow . I had a past with drug use so Ive naturally thought what if it's just permanent brain damage ?

 

[Wishful]

I don't even know if it's ME at all.

ME isn't completely unrelated to other possible medical issues; it probably shares a lot of malfunctions with other diseases. Even if you don't have ME, it probably helps to know that there are diseases that include brainfog that isn't permanent damage. Convincing yourself that it is permanent damage doesn't have any benefits; believing that it's treatable is less stressful and lets you notice accidental treatments that reduce it.

 

[Strawberry]

I don't know how to get it and it's on my list to try!

I can’t vouch for Canada, but I can get neuroprotek through amazon or direct from here: https://algonot.com/product/neuroprotek/

it’s quite expensive, but works well. I was told a person can take up to 9 in a day. I take 6, 3 in the am and 3 in the pm.

For low dose naltrexone you need a prescription. It can be compounded into pills Of low mg. But if you have enough energy, you can get the full 50mg pills you can make your own solution. Naltrexone apparently is a salt so dissolves in water. Add one 50 mg pill to 20 milliliter and you have 2.5 mg per every 1 milliliter. I think... do NOT use my math! But you get the point.

 

[HABS93]

ME isn't completely unrelated to other possible medical issues; it probably shares a lot of malfunctions with other diseases. Even if you don't have ME, it probably helps to know that there are diseases that include brainfog that isn't permanent damage. Convincing yourself that it is permanent damage doesn't have any benefits; believing that it's treatable is less stressful and lets you notice accidental treatments that reduce it.

I don't know whether it's from toxins and solvents. Bacterial or viral. I've significantly increased my glutathione with NAC three times a day. I've definitely been consuming alot of antioxidants on top of that. Not sure what else to research.

 

[Wishful]

Not sure what else to research.

That's the problem: we don't know what ME is, so we don't know what is theoretically worth trying. For me, the things that worked really well still don't have a theoretical basis for why they work. Thus, if I'd limited myself to theoretical treatments, I wouldn't have encountered them. My recommendation is to try lots of different things, and pay attention to any changes in your symptoms. FWIW, all the things that worked for me showed an effect within hours rather than several days or longer, which made it easier to find ones that worked. Maybe I've tried treatments that would work, but which I'd have to take for several months before noticing an effect, but I gave up on them after a few days or weeks. I can't try every potential treatment for months or years, so I just don't bother worrying about missing those.

BTW, antioxidants either did nothing for me or made my symptoms worse, so I don't consider them a strong candidate for treating ME.

 

[HABS93]

That's the problem: we don't know what ME is, so we don't know what is theoretically worth trying. For me, the things that worked really well still don't have a theoretical basis for why they work. Thus, if I'd limited myself to theoretical treatments, I wouldn't have encountered them. My recommendation is to try lots of different things, and pay attention to any changes in your symptoms. FWIW, all the things that worked for me showed an effect within hours rather than several days or longer, which made it easier to find ones that worked. Maybe I've tried treatments that would work, but which I'd have to take for several months before noticing an effect, but I gave up on them after a few days or weeks. I can't try every potential treatment for months or years, so I just don't bother worrying about missing those.

BTW, antioxidants either did nothing for me or made my symptoms worse, so I don't consider them a strong candidate for treating ME.

Yes but I have sarcoidosis along those lines is somewhere the symptoms must of started from. Also my bio markets for mitchrondria damage was almost 0. Makes my theory about what caused sarcoidosis to be wrong. I worked around metals (aluminum dust) and metal solvents for oil . I thought these things caused it. My energy levels are not complain worthy anymore. Now I can't just go to a music festival drink until I'm stupid and dance. However I can work . I even working Abit of overtime. So I know you might not think they do much but for me you want your antioxidants high. Sarcoidosis is your immune system overraccting.
My last theory is I have destroyed my neurotransmitters. Mdma , lsd , weed (everyday 7 years) , cigs , shrooms, cocaine . My college days I liked to have fun. Thus created such an intense anxiety and bi polar from virtually nothing being made I get everything I'm feeling. I don't really like to talk about it but maybe I should start doing a brainstorm on drugs affects on the brain. My next test is guna being organic acids neurotransmitters test .
Sorry for such a long response you help me brainstorm wishful .
I agree with you on the fact I haven't noticed anything different from the supplements I'm taking. At first my liver(or organ anear liver) hurt when taking NAC. Now I don't get side effects from NAC.

 

[YippeeKi YOW !!]

Maybe it's the magnesium in them.

Could also be the iron, which spinach is famous for ....

 

[YippeeKi YOW !!]

@Judee , @HABS93

Does anyone know what's true for probiotics at all?

There are currently about 175-180 species of the lactobacillus genus, and each of them has a slightly, or sometimes, a very different effect/target.

The one most often mentioned is lactobacillus acidopholus, which itself has about 20-25 different species, or strains, each one better for one thing, neutral for another, possibly useless for yet a third.

 

[YippeeKi YOW !!]

Funny when I have a veg smoothie my flu like symptoms go up several notches.

MCAS response?

 

[YippeeKi YOW !!]

@HABS93

there are diseases that include brainfog that isn't permanent damage. Convincing yourself that it is permanent damage doesn't have any benefits; believing that it's treatable is less stressful and lets you notice accidental treatments that reduce it.

Totally agree with @Wishful .... no matter how much you partied in school, the brain can repair itself, particularly since you're not partying hardy any more.

I know that positive thinking is dismissed as another Napoleon Hill/New Age/bullshit belief system, but it has a definite effect on the mind and body. And if nothing else, it makes the journey soooooo much pleasanter, even in the face of the mysteries of ME ....

 

[HABS93]

Could also be the iron, which spinach is famous for ....

In the end atleast I've found something that works. I'm still fatigued but im a battery who can get through 8 hours of intense work .
That's interesting. Been loving spinach lately. My stomach aches have significantly gone down for no reason. My mom has anemia but she only felt weak as a symptom. Iron pills brought her back to normal in two weeks so it's not that.
I know I'm a really positive person. Voted funniest guy at work and really socialable even in my vertigo situations. It's just I don't have enough time or money to get real answers. My integrative doctor I see once a month but how do iexplain to him that the detox is basically done and I feel no difference mentally.
Eating healthy is obviously going to life you. It's not perfect I ate pizza at lunch yesterday . Quitting weed is the last unhealthy thing I do.
I knew a guy who smoked crack everyday for 15 years. Use to give him smokes he was homeless. He recovered . Someone paid for him to go to rehab. I saw him a year later . Still Abit rugged. He was joking and felt like a new man. Yet here I am basically doing everything right with the tiniest reward after two years. @Hip read hips brain fog thread thoroughly. @Learner1 helped me alot too. I mean alot of people here have spent hours helping me. Do you think a organic acids test with neurotransmitters biomarkers is a good idea? I got 2500$ so I'm not struggling but could grab another test?

 

[nyanko_the_sane]

We are so lacking in so many ways, it is not surprising some of us do much better on a good well balanced diet. It is too bad so many foods make me feel worse.

 

[YippeeKi YOW !!]

My integrative doctor I see once a month but how do iexplain to him that the detox is basically done and I feel no difference mentally.

I think you say exactly that, and ask him what the next step might be .... should you increase or decrease soe things, should you add in something new ....

Quitting weed is the last unhealthy thing I do.

I'm not really sure how unhealthy smoking a little dope to sleep better or improve appetite and digestion really is. I wouldn;t worry about it just yet. Or maybe ever.

 

[HABS93]

I think you say exactly that, and ask him what the next step might be .... should you increase or decrease soe things, should you add in something new ....

I'm not really sure how unhealthy smoking a little dope to sleep better or improve appetite and digestion really is. I wouldn;t worry about it just yet. Or maybe ever.

I've only saw him twice so to be fair he's still getting to know my case. I'm waiting on a bunch of blood work to see what my methylation levels are at (Folate etc..) .
I really wish that were true. Smoking weed destroys any energy I have . My heart rate shoes up significantly. The next day I'm in more of a haze then when I don't smoke . My brain fog gets worse and I get dizzier the next day. Also no it's not laced or pesticides used. You don't sleep well from weed either. No REM sleep so I wake up more tired. The pros for me were after work it's something exciting to rely on. Turns a tough day at work into laughing all stoned and eating. I really wish I didn't have to stop but clearly it's doing negative things to me

 

[HABS93]

We are so lacking in so many ways, it is not surprising some of us do much better on a good well balanced diet. It is too bad so many foods make me feel worse.

I'd explore why those foods make you feel worse. If a good veggie and chicken stew makes you feel worse then that's a clue. I'd keep eating those foods and see if something breaks (which would give another clue). Maybe you can only eat organic and are reacting to chemicals used to produce veggies.

 

[YippeeKi YOW !!]

Smoking weed destroys any energy I have . My heart rate shoes up significantly. The next day I'm in more of a haze then when I don't smoke . My brain fog gets worse and I get dizzier the next day. Also no it's not laced or pesticides used. You don't sleep well from weed either. No REM sleep so I wake up more tired.

I really wish I didn't have to stop but clearly it's doing negative things to me

I hope it turns out to be due to something else ..... everyone needs some sort of wind-down after work or stress ...

Do you know if the strain you're using is Indica or Sativa?

Sativa always produced agitation and paranoia for me, but Indica mellowed me out, and relaxed me and encouraged a humorous view of practically everything ...

Damn, I miss the good ol'days ....

 

[nyanko_the_sane]

I'd explore why those foods make you feel worse. If a good veggie and chicken stew makes you feel worse then that's a clue. I'd keep eating those foods and see if something breaks (which would give another clue). Maybe you can only eat organic and are reacting to chemicals used to produce veggies.

Good advice! Some clues I have are to avoid inflammatory foods. That means I have to avoid 100% of processed foods for sure.

Stanford recommends the Mediterranean diet, but even this diet is not free from inflammation inducing histamines.

 

[HABS93]

Good advice! Some clues I have are to avoid inflammatory foods. That means I have to avoid 100% of processed foods for sure.

Stanford recommends the Mediterranean diet, but even this diet is not free from inflammation inducing histamines.

I have something similar to the histamines and inflammation diet. I stick kind of by my veggies and meat. Then I go have beers with some friends. Yes it's guna cause inflammation but can't always be perfect.Even with a diet you will still have days where you just ate a juicy burger 🍔😜. I'm not guna let the rest of my 20s slip away in my bed unless there's a women there lmao that's just my two cents. What you should do is get a food sensitive test see what exactly happens.