Worsening exhaustion and LC symptoms

Posted by crowlee @crowlee, Jun 10 4:32pm

Has anyone else noticed that? I seem to be getting worse after having LC since Jan 2024. I also now have allergies which I never had before so much so my eyes swelled shut. My heat intolerance is through the roof; I got heat stroke yesterday at work inside (!) where it was warm, but not hot. I had to leave and spent yesterday and most of today lying down.
Has anyone experienced things like this? I’m at my wit’s end - nothing helps.

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I’m with you. My heat tolerance is through the roof. I can’t do the walks I previously enjoyed with my grandchildren. I scheduled a second opinion appointment. Can’t live like this!

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Profile picture for bestrongnow @bestrongnow

I’m with you. My heat tolerance is through the roof. I can’t do the walks I previously enjoyed with my grandchildren. I scheduled a second opinion appointment. Can’t live like this!

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@bestrongnow Im so sorry to hear that and yes, it’s the WORST! I had severe heat stroke in 2002 and heat intolerance became an issue afterwards. With Covid it has now become intolerable. So much so I had a heat stroke episode in the pharmacy where I work! It was stuffy, but not hot hot. It took 2 days to recover. My life is no longer my own and I do feel your frustration! I hope you find some relief .

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I did the elimination diet with my doctor to find out what caused my eyes to swell. Had to give up some foods...but no more eye swelling. I had no allergies to food prior to covid.

And I also has heat intolerance...I am five years post covid and still cannot take a walk when it is over 75 degrees but I can go outside when it is warm/hot without having to go directly to bed. I did start on low dose naltrexone about four months ago and it improved everything.

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Profile picture for vostie @vostie

I did the elimination diet with my doctor to find out what caused my eyes to swell. Had to give up some foods...but no more eye swelling. I had no allergies to food prior to covid.

And I also has heat intolerance...I am five years post covid and still cannot take a walk when it is over 75 degrees but I can go outside when it is warm/hot without having to go directly to bed. I did start on low dose naltrexone about four months ago and it improved everything.

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I tried low dose naltrexone, but even at the lowest dose I had severe agita and anxiety no matter when I took it. It didn’t help at all 🙁

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Profile picture for Athena Atkins @athenaatkins

I just started NAC (Thorne brand, which appears to be a very reputable brand) five days ago, specifically for rapidly worsening GI issues that may or may not even be related to my Long Covid, but I have already noticed drastic improvements in my GI symptoms. NAC is mucolytic and can break up bacterial biofilms in the gut that can cause a slew of issues (decreased microbial diversity, absorption issues, etc.).

NAC is also the precursor to glutathione, which is the body’s natural antioxidant, and NAC has been shown to reduce inflammation in animal models (specifically interleukins and TNF-a, which are some of the cytokines shown to be elevated in people with LC). It is being used as part of a treatment protocol by Yale in combination with guanfacine (which I have not tried). It’s a pretty potent supplement, so dosage, side effects and potential drug interactions need to be considered. Definitely good to let your doctor know if you are thinking about trying it.

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Athena ~ thanks for your helpful post. Are you being treated at Yale? If so, which department specifically? I’ve been seen by Dr. Sanders and her PA, to no avail (at least not yet).

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Profile picture for crowlee @crowlee

I tried low dose naltrexone, but even at the lowest dose I had severe agita and anxiety no matter when I took it. It didn’t help at all 🙁

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So sorry to hear that - I had to start at .5 mg and had side effects for about a week but after that I was able to titrate up slowly to 3.5 mg and stopped. It really helps me with a more energy and reduces my pain significantly. I had to take it in the morning or it kept me up all night to begin with.

You might want to try it at .1 mg to see if you can tolerate it. You will get a burst of energy from it as it works by inhibiting the release of endorphins for about two hours and then your body lets go with more endorphins than usual.

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Profile picture for essiee @essiee

Athena ~ thanks for your helpful post. Are you being treated at Yale? If so, which department specifically? I’ve been seen by Dr. Sanders and her PA, to no avail (at least not yet).

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I am not being treated by any facility, just trying to figure things out on my own by trial and error.

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Profile picture for vostie @vostie

So sorry to hear that - I had to start at .5 mg and had side effects for about a week but after that I was able to titrate up slowly to 3.5 mg and stopped. It really helps me with a more energy and reduces my pain significantly. I had to take it in the morning or it kept me up all night to begin with.

You might want to try it at .1 mg to see if you can tolerate it. You will get a burst of energy from it as it works by inhibiting the release of endorphins for about two hours and then your body lets go with more endorphins than usual.

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@vostie that’s a good idea. I have very strange reactions to meds so… we’ll see!

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Profile picture for crowlee @crowlee

@vostie that’s a good idea. I have very strange reactions to meds so… we’ll see!

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Understood...I usually get every side effect a prescription drug has but in this case. LDN worked as long as I titrated slowly and took it early in the day,

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Profile picture for vostie @vostie

I did the elimination diet with my doctor to find out what caused my eyes to swell. Had to give up some foods...but no more eye swelling. I had no allergies to food prior to covid.

And I also has heat intolerance...I am five years post covid and still cannot take a walk when it is over 75 degrees but I can go outside when it is warm/hot without having to go directly to bed. I did start on low dose naltrexone about four months ago and it improved everything.

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I am unfamiliar with Naltraxone. How does it help?

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