What’s next?

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Hi 🙋‍♂️
As some of you might know, I reacted in an abnormal positive way from Abilify (very severe to being able to work again) in 2020 but after 4.5 months it lost its efficacy overnight. Restarting it after five months failed.

I’m currently in daily close contact to Joshua who always tries to improve me, trying new supplements, backed with studies. The only thing that serves us is my Metabolon result from 2019 (which is indeed horrorfying). I improved but reached a ceiling now, staggering. He thinks that Herpes isn’t my problem (all listen up!)

I’ve measured my intracellular ATP levels multiple times and it always comes out normal or even better than average.

But besides my metabolic problems I have a weird immune system (elevated MCP-1, IL-1b, IL-8, very very low IFNg which I try to elevate with Tulsi; low NK cell numbers, very low B cell numbers, low thymus activity). The other TH1, TH2, TH17, THreg cytokines are very low or normal. BDNF is very low. RANTES and VEGF normal.

Hormones are in check.

No AAB have been found in two hospitals (can’t count what they all tested).

There are more signs of chronic inflammation (Macrophages Migration Inhibitiory Factor breaks through the ceiling; MRP 8/14 is elevated; procalcitonin is elevated).

Some Interferons are also highly elevated suggesting an ongoing infection and indeed my NT is positive for Coxsackie B4 (1:640). The Herpesvirudae results are somehow difficult and contradictory, I have to investigate them further (do a qPCR on EBV and HHV6 and have persistent positive IgM for HSV I/II while saliva PCR is negative).

So. Long story short. I treat my assumed Coxsackie with Equilibrant (started yesterday). Besides I take Inosine Pranobrex for NK cells. Vitamins and Co factors should be in check (Life Extension Mix). Tried 1200mg Benfothiamine without success.

I think my solution is DOPAMINE related. I only come across members who improved a bit or on a medium level on it but not that dramatically as I did. My new ME doc is totally against antivirals bc of mitochondrial damages they cause. He prescribed Wellbutrin (one of these Goldstein short term “wow”-drugs), a dopamine reuptake inhibitor. I'll try it tomorrow but don't think that will be the game changer.

What else might be beneficial?.
My only real problem is ultra low energy (100% bedridden, can't even sit) and heavy heavy PEM!

I don't have pain (besides headaches sometimes caused by tense neck muscles). The other symptoms are manageable.

I'm sorry for that long post. I'm very frustrated and have a little hope that someone has an idea.

Thank you so much for your time and energy!

Martin
 
Last edited:

nerd

Senior Member
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Thanks for sharing.

Can you distinguish if your energy issue is muscular, which might not be the case since your intracellular ATP is normal, or if it is neuromuscular? Is it easy for you to keep your back straight?

I'm also looking into antivirals and its frustrating that Valaciclovir is the only affordable herpes antiviral for that there is solid evidence that it is safe when it comes to genotoxicity. I think the other drugs are still relatively safe in a short term treatment. I hope that HDAC inhibitors can help accelerate the effect on sleeping reservoirs.
 
Last edited:

Learner1

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Hi, sorry to hear restart didn’t work. There was absolutely no effect 2nd time you tried Abilify? Maybe wait a full year and try again? Or try rexulti? There are 0.25 tablets of rexulti available.
Can you please explain the mechanism of this drug and why you think it would be helpful? Why do you think it's a substitute for Abilify?
 
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Hi, sorry to hear restart didn’t work. There was absolutely no effect 2nd time you tried Abilify? Maybe wait a full year and try again? Or try rexulti? There are 0.25 tablets of rexulti available.
Thank you. I have Cariprazine here which could also be a solution but I first want to wait if there are better choices. I’d had to import Rexulti but would be worth a try. The only thing I don’t know is if I would be cross tolerant
 
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Thanks for sharing.

Can you distinguish if your energy issue is muscular, which might not be the case since your intracellular ATP is normal, or if it is neuromuscular? Is it easy for you to keep your back straight?

I'm also looking into antivirals and its frustrating that Valaciclovir is the only affordable herpes antiviral for that there is solid evidence that it is safe when it comes to genotoxicity. I think the other drugs are still relatively safe in a short term treatment. I hope that HDAC inhibitors can help accelerate the effect on sleeping reservoirs.
No, i can’t sit … I can only lie… I honestly don’t know how to distinguish between muscular and neuromuscular since both would lead to weakness.
If you find an affordable and safe HDACi which is effective I would be happy...
 

ljimbo423

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Tyrosine could work… I can’t get Kuvan in Germany
I've found that N-acetyl-L-Tyrosine is much, much more powerful than L-Tyrosine. I was taking 6-7 grams a day of L-Tyrosine and hardly noticed any increase in energy.

I switched to 3-400 mg a day of N-acetyl-L-Tyrosine and get a big energy boost. It hasn't lost any of it's effectiveness after a few years either.

Of course your results will depend on your biochemistry. You might do better with L-Tyrosine, NAT or neither. Given how cheap they both are, it might be worth a try.
 
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I've found that N-acetyl-L-Tyrosine is much, much more powerful than L-Tyrosine. I was taking 6-7 grams a day of L-Tyrosine and hardly noticed any increase in energy.

I switched to 3-400 mg a day of N-acetyl-L-Tyrosine and get a big energy boost. It hasn't lost any of it's effectiveness after a few years either.

Of course your results will depend on your biochemistry. You might do better with L-Tyrosine, NAT or neither. Given how cheap they both are, it might be worth a try.
Thank you I will try both!
 

crypt0cu1t

IG: @crypt0cu1t
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Hi 🙋‍♂️
As some of you might know, I reacted in an abnormal positive way from Abilify (very severe to being able to work again) in 2020 but after 4.5 months it lost its efficacy overnight. Restarting it after five months failed.

I’m currently in daily close contact to Joshua who always tries to improve me, trying new supplements, backed with studies. The only thing that serves us is my Metabolon result from 2019 (which is indeed horrorfying). I improved but reached a ceiling now, staggering. He thinks that Herpes isn’t my problem (all listen up!)

I’ve measured my intracellular ATP levels multiple times and it always comes out normal or even better than average.

But besides my metabolic problems I have a weird immune system (elevated MCP-1, IL-1b, IL-8, very very low IFNg which I try to elevate with Tulsi; low NK cell numbers, very low B cell numbers, low thymus activity). The other TH1, TH2, TH17, THreg cytokines are very low or normal. BDNF is very low. RANTES and VEGF normal.

Hormones are in check.

No AAB have been found in two hospitals (can’t count what they all tested).

There are more signs of chronic inflammation (Macrophages Migration Inhibitiory Factor breaks through the ceiling; MRP 8/14 is elevated; procalcitonin is elevated).

Some Interferons are also highly elevated suggesting an ongoing infection and indeed my NT is positive for Coxsackie B4 (1:640). The Herpesvirudae results are somehow difficult and contradictory, I have to investigate them further (do a qPCR on EBV and HHV6 and have persistent positive IgM for HSV I/II while saliva PCR is negative).

So. Long story short. I treat my assumed Coxsackie with Equilibrant (started yesterday). Besides I take Inosine Pranobrex for NK cells. Vitamins and Co factors should be in check (Life Extension Mix). Tried 1200mg Benfothiamine without success.

I think my solution is DOPAMINE related. I only come across members who improved a bit or on a medium level on it but not that dramatically as I did. My new ME doc is totally against antivirals bc of mitochondrial damages they cause. He prescribed Wellbutrin (one of these Goldstein short term “wow”-drugs), a dopamine reuptake inhibitor. I'll try it tomorrow but don't think that will be the game changer.

What else might be beneficial?.
My only real problem is ultra low energy (100% bedridden, can't even sit) and heavy heavy PEM!

I don't have pain (besides headaches sometimes caused by tense neck muscles). The other symptoms are manageable.

I'm sorry for that long post. I'm very frustrated and have a little hope that someone has an idea.

Thank you so much for your time and energy!

Martin
Have you tried Rotigotine? I've also been thinking dopamine may be an issue for me.
 

crypt0cu1t

IG: @crypt0cu1t
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Something I've noticed is that Hydrocodone makes me feel extremely good (almost normal) and I've read that it temporarily increases dopamine.
This also may be a stretch, but I've read that marijuana can decrease dopamine (I went from mild to severe the same day that I smoked)