Dr. Chia

Learner1

Senior Member
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Er….. 😂 perhaps Boswellia @Learner1 ?
Boswellia is very helpful for brain inflammation, as is a high potency curcumin, like Designs for Health CurcumEvail, which is, far and away, the most potent curcumin product I've tested for brain inflammation. I take up to 4g day of boswellia and 8g a day of CurcumEvail.

And then there are NSAIDs, though they can be hard on your liver and microbiome.
 

Martin aka paused||M.E.

Senior Member
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2,291
Boswellia is very helpful for brain inflammation, as is a high potency curcumin, like Designs for Health CurcumEvail, which is, far and away, the most potent curcumin product I've tested for brain inflammation. I take up to 4g day of boswellia and 8g a day of CurcumEvail.

And then there are NSAIDs, though they can be hard on your liver and microbiome.
Quite expensive?! But you seem to have great success with it
 

dylemmaz

Senior Member
Messages
136
I've decided to give tenofovir a try. I might add Oxymatrine when it arrives. It could help my immune system.
i’ve been wanting to try equilibrant. i’ve purchased it already and i have it sitting in front of me. my doctor hasn’t been willing to order me the enterovirus panel that chia orders though, so i’m not sure if it’s even worth it for me since i don’t know if i have an infection or not. my original onset was gastrointestinal so i suspect it’s quite possible that i do/did have an enterovirus infection. my gut problems are mostly resolved now though. maybe i should try it anyway?
 

Martin aka paused||M.E.

Senior Member
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2,291
i’ve been wanting to try equilibrant. i’ve purchased it already and i have it sitting in front of me. my doctor hasn’t been willing to order me the enterovirus panel that chia orders though, so i’m not sure if it’s even worth it for me since i don’t know if i have an infection or not. my original onset was gastrointestinal so i suspect it’s quite possible that i do/did have an enterovirus infection. my gut problems are mostly resolved now though. maybe i should try it anyway?
I also only had diarrhoea … try it!
 

Diwi9

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Just want to chime back in here to report that I am having a sort of amazing response to Valtrex. I don't know if this response will last. The first time I was on Valtrex, I could feel an improvement at the 3-week mark. I recently restarted Valtrex after a very rough year off of anti-virals, it's been about three weeks and this time around the response is that I am not crashing...knock on wood. I'm still dealing with dysautonomia/POTS and need to rest along with taking naps. But I've been able to do activities without crashing (i.e. wash a car inside and out, hang out with friends for hours and wake up fine the next morning). I don't have answers for any of this, just want to share my experience. I have not attempted an exercise challenge, as I'm just enjoying being able to be active again...and showering regularly, doing laundry, etc. I should mention that between 2012-part of 2016, I was in a quasi-remission. I don't know if a quasi-remission is what this is, but I will take every solid good day I can get and just hope it lasts. I am still having sore/weak muscles (and muscle spasms) at times and the other morning I woke up and swore I was getting a cold, but all symptoms passed by the afternoon. I even had a fever over 100.
 

GlassCannonLife

Senior Member
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819
Just want to chime back in here to report that I am having a sort of amazing response to Valtrex. I don't know if this response will last. The first time I was on Valtrex, I could feel an improvement at the 3-week mark. I recently restarted Valtrex after a very rough year off of anti-virals, it's been about three weeks and this time around the response is that I am not crashing...knock on wood. I'm still dealing with dysautonomia/POTS and need to rest along with taking naps. But I've been able to do activities without crashing (i.e. wash a car inside and out, hang out with friends for hours and wake up fine the next morning). I don't have answers for any of this, just want to share my experience. I have not attempted an exercise challenge, as I'm just enjoying being able to be active again...and showering regularly, doing laundry, etc. I should mention that between 2012-part of 2016, I was in a quasi-remission. I don't know if a quasi-remission is what this is, but I will take every solid good day I can get and just hope it lasts. I am still having sore/weak muscles (and muscle spasms) at times and the other morning I woke up and swore I was getting a cold, but all symptoms passed by the afternoon. I even had a fever over 100.

Wow, that's amazing! I hope it continues. I've never tried valtrex but maybe it's worth a shot considering how much cheaper (and less side effect ridden) it is than valcyte.
 

Learner1

Senior Member
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Wow, that's amazing! I hope it continues. I've never tried valtrex but maybe it's worth a shot considering how much cheaper (and less side effect ridden) it is than valcyte.
I had few side effects on both drugs.

I had very good luck with valganciclovir The first time, but now, three years later, after my Moderna vaccine reactivated HHV6, It hasn't seem to be as helpful and the doctor is now having me try Famvir along with it.

But, I've been finding a lot of patients have viruses that are stealthily creating problems so it's worth a try.
 

ChookityPop

Senior Member
Messages
605
Just want to chime back in here to report that I am having a sort of amazing response to Valtrex. I don't know if this response will last. The first time I was on Valtrex, I could feel an improvement at the 3-week mark. I recently restarted Valtrex after a very rough year off of anti-virals, it's been about three weeks and this time around the response is that I am not crashing...knock on wood. I'm still dealing with dysautonomia/POTS and need to rest along with taking naps. But I've been able to do activities without crashing (i.e. wash a car inside and out, hang out with friends for hours and wake up fine the next morning). I don't have answers for any of this, just want to share my experience. I have not attempted an exercise challenge, as I'm just enjoying being able to be active again...and showering regularly, doing laundry, etc. I should mention that between 2012-part of 2016, I was in a quasi-remission. I don't know if a quasi-remission is what this is, but I will take every solid good day I can get and just hope it lasts. I am still having sore/weak muscles (and muscle spasms) at times and the other morning I woke up and swore I was getting a cold, but all symptoms passed by the afternoon. I even had a fever over 100.
This is amazing!
What do you think helped you in the quasi-remission period from 2012-2016? Did you take valtrex back then?
 

Diwi9

Administrator
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Location
USA
This is amazing!
What do you think helped you in the quasi-remission period from 2012-2016? Did you take valtrex back then?
I was mild back then and did two years of immunotherapy for allergies, quit my job and went back to school. So, probably the coupling of exerting less and the immunotherapy. I was not formally diagnosed ME/CFS until my relapse in 2016.
 

kewia

Senior Member
Messages
242
People with autoimmune illnesses shouldn’t take oxymatrine right? I ordered some and just realized that this was a mistake. 200$ gone…

Did you observe any side effects, or does it simply do nothing?
I think you can get it cheaper by
However, I don't know if it has the same effect as extracted oxymatrine from this plant. But they deliverd to Germany without problems.
 

kewia

Senior Member
Messages
242
Yes, I responded to the Equilibrant and the Valtrex. I stayed on the Valtrex, then switched to Famvir. I later tried Valcyte and had no response to it. I stopped anti-virals about a year ago and have declined. I'm in the process of restarting Valtrex. None of these were miracles, but did help get me out of bed and be more stable.
Why you stopped Equilibrant?
 
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