What’s next?

[Learner1]

Yes we discussed about it. Zoom: docs say no. I'm not stable enough for a transport but if there is no other choice I have to.

Unless you can get to someone who can help you, it will be difficult to make any progress. Hopefully you and your doctor can select the right immunologist to help you and your doctor could write a note detailing your immune abnormalities and ask for the new doc to please help?

 

[Martin aka paused||M.E.]

Unless you can get to someone who can help you, it will be difficult to make any progress. Hopefully you and your doctor can select the right immunologist to help you and your doctor could write a note detailing your immune abnormalities and ask for the new doc to please help?

I hope so too. Thank you for your help!!!!

 

[Martin aka paused||M.E.]

I'm on Wellbutrin for one and a half weeks now and the improvement is obvious. I can talk with normal voice again and can raise the headboard of the bed much higher. I can drink my espresso ️ again and swallow pills.

So dopamine is a real issue.

It has anti-inflammatory properties

Importantly, in vivo data show that DA and DRD1 signaling prevent NLRP3 inflammasome-dependent inflammation, including neurotoxin-induced neuroinflammation, LPS-induced systemic inflammation

https://pubmed.ncbi.nlm.nih.gov/25594175/

Studies investigating the impact of a variety of inflammatory stimuli on the brain and behavior have consistently reported evidence that inflammatory cytokines affect the basal ganglia and dopamine

https://pubmed.ncbi.nlm.nih.gov/27225499/

The only problem I have is that it plateaus. So I will try Lisdexamfetamine that directly increase the receptor activity (Wellbutrin inhibits the reuptake of dopamine)

Hope that will help with energy.

 

[Martin aka paused||M.E.]

qPCR shows exactly 0 copies of EBV and HHV6.
So, I give the Heroesviridae theory up and concentrate on Coxsackie.
Tenofovir must work. Otherwise there is no therapy for me. I don't think that oxymatrine will result in a immune response bc my immune system is too weak.

 

[Marylib]

Welcome to Germany One of the richest countries in the world (due to its arms trade, corruption, lobby politics for the big companies and scourging of the poor EU-countries - in addition to an admittedly well-functioning economy).

But if you get sick and are not exactly a standard case - good night!

I know this is no help to you, but being in the US is no guarantee of good care for situations like yours. I went to court in Oregon to attempt to get care outside my own local area and was denied. I was given the option to prove a diagnosis, but I had no proof that matched the criteria of the court. And I was too sick to pursue it further.

 

[GlassCannonLife]

qPCR shows exactly 0 copies of EBV and HHV6.
So, I give the Heroesviridae theory up and concentrate on Coxsackie.
Tenofovir must work. Otherwise there is no therapy for me. I don't think that oxymatrine will result in a immune response bc my immune system is too weak.

I don't think people that benefit from antivirals targeting herpes viruses are positive in a PCR test context though.. That's partly why doctors don't like to prescribe the drugs.

I thought I remembered you ordering oxymatrine some time ago - did you end up trying it?

 

[Martin aka paused||M.E.]

I don't think people that benefit from antivirals targeting herpes viruses are positive in a PCR test context though.. That's partly why doctors don't like to prescribe the drugs.

I thought I remembered you ordering oxymatrine some time ago - did you end up trying it?

Im still waiting for an immune response…

 

[GlassCannonLife]

Im still waiting for an immune response…

Ah ok. Which brand did you get, and what dose are you up to?

 

[Martin aka paused||M.E.]

Ah ok. Which brand did you get, and what dose are you up to?

Equilibrant and I'm at 6 pills... Don't know how much oxymatrine that is

 

[GlassCannonLife]

Equilibrant and I'm at 6 pills... Don't know how much oxymatrine that is

Wow that's a high dose! Crazy you haven't had an immune response. Maybe thymosin alpha 1 would help rebalance things? Also I remember @mitoMAN had a huge boost in NK cell number from hGH but that is generally very expensive - perhaps GHRPs would be an option..

 

[Martin aka paused||M.E.]

Wow that's a high dose! Crazy you haven't had an immune response. Maybe thymosin alpha 1 would help rebalance things? Also I remember @mitoMAN had a huge boost in NK cell number from hGH but that is generally very expensive - perhaps GHRPs would be an option..

I found an immunologist who is willing to help me. I wait for his recommendations... You can fuck up your immune system when you don't exactly know what you do... So I wait until Equilibrant is empty and then I think it's better to use immune peptides and so on under his supervision

 

[GlassCannonLife]

I found an immunologist who is willing to help me. I wait for his recommendations... You can fuck up your immune system when you don't exactly know what you do... So I wait until Equilibrant is empty and then I think it's better to use immune peptides and so on under his supervision

Sounds good! Hopefully he will know enough about peptides

 

[Martin aka paused||M.E.]

So. Wellbutrin is effective. But it's too weak and there are many reports that it loses its efficiency after a few weeks.

Atm I'm 95% sure that dopamine is my bandaid until there is sth that treats the root cause.

So I have a few options and would like to ask you for some input.

- Cariprazine
- Amisulpride
- Rexulti
- Levodopa (in low concentrations sometimes combined with Wellbutrin)
- Avena Sativa (+Wellbutrin?), though we would have the “clean up” problem (dopamine quinolones etc) here which might lead to neurotoxicity
- Lisdexamfetamine (this was would be the only one without anecdotal success in ME). Study: https://pubmed.ncbi.nlm.nih.gov/23062791/#
- Rotigotine

I know about the risks. I wish it would be another thing that would help me. But I have to get out of bed and it's so obvious now that dopamine helps me that I would try almost everything (carefully).

Thank you very much!!!

 

[sb4]

@Hip Has been taking Amisulpride for years, if you have any questions thats a good place to start.

 

[Martin aka paused||M.E.]

@Hip Has been taking Amisulpride for years, if you have any questions thats a good place to start.

Yes right.

Afaik @Hip takes 25mg for his anxiety but does not increase his energy levels. Correct me if I'm wrong please.

I'm only interested in increasing energy and the only drugs that did that are Ativan (short term, addiction, overall of course not a treatment), Abilify (stopped working but was VERY effective) and Wellbutrin (too weak even in combination with BH4 and l tyrosine).

I think of taking 25mg of Amisulpride with Wellbutrin though I have to discuss that with my doc but there are case reports that it works for parkinson+depression.

The good thing about Amisulpride is that it only affects dopamine receptors. It's the only anti-psych drug that does that afaik.

 

[Hip]

Afaik @Hip takes 25mg for his anxiety but does not increase his energy levels. Correct me if I'm wrong please.

I take 12.5 mg once daily (sometimes I go up to 25 mg), and it helps my ME/CFS sound sensitivity, boosts mood, reduces the ME/CFS irritability symptom, but in my case it did not reduce fatigue.

However, a small scale study of the benefits of amisulpride for ME/CFS found that 25 mg of this drug taken twice daily reduced fatigue and somatic complaints, such as pain.

 

[GlassCannonLife]

So. Wellbutrin is effective. But it's too weak and there are many reports that it loses its efficiency after a few weeks.

Atm I'm 95% sure that dopamine is my bandaid until there is sth that treats the root cause.

So I have a few options and would like to ask you for some input.

- Cariprazine
- Amisulpride
- Rexulti
- Levodopa (in low concentrations sometimes combined with Wellbutrin)
- Avena Sativa (+Wellbutrin?), though we would have the “clean up” problem (dopamine quinolones etc) here which might lead to neurotoxicity
- Lisdexamfetamine (this was would be the only one without anecdotal success in ME). Study: https://pubmed.ncbi.nlm.nih.gov/23062791/#
- Rotigotine

I know about the risks. I wish it would be another thing that would help me. But I have to get out of bed and it's so obvious now that dopamine helps me that I would try almost everything (carefully).

Thank you very much!!!

Correct me if I'm wrong but wouldn't you just end up with receptor downregulation from any/all of these and then get potential rebound issues etc?

Eg when I used 5-htp for sleep, it worked really well for 2 months then it just randomly stopped working and would make my sleep marginally worse and make me feel strange.. This hasn't recovered over the last 6+ months of zero use. I'd be concerned that you'd have something like that happen but with dopamine.

I recommended peptides because the modulation of serotonergic and dopaminergic systems by things like bpc-157 and Semax are potentially going to work in a sufficiently different way to not cause the issues.. Just brainstorming though, YMMV, etc.

 

[Martin aka paused||M.E.]

Correct me if I'm wrong but wouldn't you just end up with receptor downregulation from any/all of these and then get potential rebound issues etc?

Eg when I used 5-htp for sleep, it worked really well for 2 months then it just randomly stopped working and would make my sleep marginally worse and make me feel strange.. This hasn't recovered over the last 6+ months of zero use. I'd be concerned that you'd have something like that happen but with dopamine.

I recommended peptides because the modulation of serotonergic and dopaminergic systems by things like bpc-157 and Semax are potentially going to work in a sufficiently different way to not cause the issues.. Just brainstorming though, YMMV, etc.

Why do you think so? And how do these peptides work in another way?

 

[Irat]

Correct me if I'm wrong but wouldn't you just end up with receptor downregulation from any/all of these and then get potential rebound issues etc?

Eg when I used 5-htp for sleep, it worked really well for 2 months then it just randomly stopped working and would make my sleep marginally worse and make me feel strange.. This hasn't recovered over the last 6+ months of zero use. I'd be concerned that you'd have something like that happen but with dopamine.

I recommended peptides because the modulation of serotonergic and dopaminergic systems by things like bpc-157 and Semax are potentially going to work in a sufficiently different way to not cause the issues.. Just brainstorming though, YMMV, etc.

Agree on this as increasing dopamin directly It’s bypassing the rate-limiting step (tyrosine > L-DOPA via tyrosine hydroxylase) and directly increasing dopamine, thereby downregulating dopamine.....and you actually would want the opposite
https://www.theoptimizingblog.com/repair-dopamine-receptors/

 

[Martin aka paused||M.E.]

Agree on this as increasing dopamin directly It’s bypassing the rate-limiting step (tyrosine > L-DOPA via tyrosine hydroxylase) and directly increasing dopamine, thereby downregulating dopamine.....and you actually would want the opposite
https://www.theoptimizingblog.com/repair-dopamine-receptors/

Looked at this link. I already take ALCAR, Forskolin and Uridine.
If that was a dogma than no one could take for example Abilify for longer than a few months?!
Semax is interesting though but I'm quite sure I can't import it.