What’s next?

[Irat]

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.

It's not a dogma,but still saying be careful,my life was destroyed after SSRI withdrawal for 6 years.I know your desperate,I know some ppl find relief without side effects either by taking drugs or coming off,yes....but still it leads to kindling in the end,which means playing around,getting on and off drugs...one day it could hit you hard .

 

[Martin aka paused||M.E.]

It's not a dogma,but still saying be careful,my life was destroyed after SSRI withdrawal for 6 years.I know your desperate,I know some ppl find relief without side effects either by taking drugs or coming off,yes....but still it leads to kindling in the end,which means playing around,getting on and off drugs...one day it could hit you hard .

Yes, that's true. Unfortunately, I don’t see another chance. I have tried most of those things especially with tyrosine. No effect. My life is already destroyed. That’s my problem… but thank you for your link! It’s an interesting read!

 

[Irat]

Yes, that's true. Unfortunately, I don’t see another chance. I have tried most of those things especially with tyrosine. No effect. My life is already destroyed. That’s my problem… but thank you for your link! It’s an interesting read!

It's not a candy...and the damage most of the time happens when coming off not while taking it .....wish you well whatever you do.take care

https://www.drugwatch.com/abilify/side-effects/

 

[Martin aka paused||M.E.]

It's not a candy...and the damage most of the time happens when coming off not while taking it .....wish you well whatever you do.take care

https://www.drugwatch.com/abilify/side-effects/

Thank you very much!

 

[Viala]

It's not a candy...and the damage most of the time happens when coming off not while taking it .....wish you well whatever you do.take care

I remember reading that some supplements (I think aminos, but I'm not sure) helped a lot with withdrawal symptoms from getting off antidepressants. I can't recall now what supplement and AD it was, I think it's worth to research just in case. It was in reports of people getting off AD, not in official studies.

 

[Viala]

@Martin aka paused||M.E. This thread may be of interest to you, it's about using low dose cortisol to help with fatigue, there is a website link in the first post where it's described in detail, it's a bit long read. Cortisol affects dopamine levels. That's another thing I would like to try if nothing else will help, it's a new concept and also have some risks of course.

https://forums.phoenixrising.me/threads/cortisol-brought-me-back-to-life.82067/

 

[Martin aka paused||M.E.]

@Martin aka paused||M.E. This thread may be of interest to you, it's about using low dose cortisol to help with fatigue, there is a website link in the first post where it's described in detail, it's a bit long read. Cortisol affects dopamine levels. That's another thing I would like to try if nothing else will help, it's a new concept and also have some risks of course.

https://forums.phoenixrising.me/threads/cortisol-brought-me-back-to-life.82067/

I was on 10mg hydrocortisone for 2 months and it did nothing :-(

 

[Viala]

I was on 10mg hydrocortisone for 2 months and it did nothing :-(

Oh, sorry to hear that. Then we need to keep looking, there is always something new to try.

 

[Martin aka paused||M.E.]

Oh, sorry to hear that. Then we need to keep looking, there is always something new to try.

Thank you!

 

[Boba]

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).

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!!!

Lisdexamfetamine gave me anxiety

I do not believe that any kind of drug or another magic pill will heal ME.Medicine have never healed any chronic illness only treated it....
There is this quote "there comes the point where we need to stop just pulling people out of the river ...we need to go upstream and need to find out why they are falling it ..........i truly believe in there we also can find healing instead of trying bypassing the root cause.....not saying it's easy though.but there are healing stories out there

But maybe medicine will change? Long Covid will influence the way chronic illness will be rearched and treated. I‘m sure about that.

 

[Martin aka paused||M.E.]

I do not believe that any kind of drug or another magic pill will heal ME.Medicine have never healed any chronic illness only treated it....
There is this quote "there comes the point where we need to stop just pulling people out of the river ...we need to go upstream and need to find out why they are falling it ..........i truly believe in there we also can find healing instead of trying bypassing the root cause.....not saying it's easy though.but there are healing stories out there

That's possible.. But out of my intellectual capacity. If ppl like Davis struggle to figure it out how could I? I stumbled across dopamine and that's my bandaid for now... We will see what boosting my immune system and tenofovir will do

 

[Irat]

Lisdexamfetamine gave me anxiety

But maybe medicine will change? Long Covid will influence the way chronic illness will be rearched and treated. I‘m sure about that.

No it does n t. They look at it in "medical thinking"and use the germ theory ,but not the terrain theory.hardly anyone asked the question why ppl get sick with covid,what can we change about that.do they ban glyphosat, stop polluting our water and food ,soil and air ,toxic cleaning products ,5 G etc etc ? No .they won t .yes they might find drugs to "treat" the symptoms,but they don t go up the river and look why we get sick in the first place.thats what was my intention with my post,not about medicine.

 

[Martin aka paused||M.E.]

No it does n t. They look at it in "medical thinking"and use the germ theory ,but not the terrain theory.hardly anyone asked the question why ppl get sick with covid,what can we change about that.do they ban glyphosat,our polluted water ,soil and air ,toxic cleaning products etc etc .yes they might find drugs to "treat" the symptoms,but they don t go up the river and look why we get sick in the first place.thats what I'm talking about,not about medicine

These are theories and claims by functional medicine and holistic practitioners while there is no real evidence about it. I remember how the autism patient advocates raised their voices bc of all those millions going into research to find evidence for a connection between vaccines and autism instead of investing the money in autism research.

I'm not an expert. Epigenetics is a real thing. But there are claims out there about the causes of illnesses which blames the patients for getting sick (wrong diet, mindset, lifestyle) without good to no evidence.

Don't let me be misunderstood: it might be true that this all is the cause for many illnesses. But not all.

Homo sapiens sapiens got ill with many diseases over 10.000 years ago and before the second human revolution.

I wouldn’t take the approach you criticise about medicine if the rest worked out. But it didn’t. And I’m experimenting with it for nine years now. But I gave the holistic approach up bc it didn’t help me. No, it stressed me more and more bc of my beliefs of making things wrong with diet, meditation and so on… because there is a pattern all those gurus have in common: if their approach does not work you didn’t try hard enough.

I don’t think so anymore.

 

[Irat]

Also where are the greek,spanish,italien,Iceland .Amish,russian groups for ME,MCS, Parkinson,MS etc ? I mean we can t deny it,that there are very resilient ppl out in the world,and I like to ask why are they more resilient...

One methapor I like https://en.m.wikipedia.org/wiki/Roseto_effect

And this one,my favourite,I love greece
https://www.bbc.com/news/magazine-20898379

 

[Boba]

Also where are the greek,spanish,italien,Iceland .Amish groups for ME,MCS, Parkinson,MS etc ? I mean we can t deny it,that there are very resilient ppl out in the world,and I like to ask why are they more resilient...

One methapor I like https://en.m.wikipedia.org/wiki/Roseto_effect

It‘s a big topic in Spain as far as I know. However it may come down to less stress in their lives. I know that my problem is stress and hyperarousel combined with weak emotional regulation. Some people are just more sensitive which for sure is epigenetics IMO. These are the ones I know, but there are also things like HSV, HPV and staphylococcus aureus. All of this wasn’t a problem till Covid. Covid screwed everything. We need to try treatments to get at least a bit better until there are solutions. And there will be solutions. Not tomorrow, but LC will help us to find them. Weird to say that Covid is the best thing that could happen to the ME community. The momentum is big.

 

[GlassCannonLife]

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

Wow.. Just wrote out a reply with links and the page timed out and refreshed and it all disappeared! So annoying!

As @Irat said, increasing the amount of dopamine either by inhibiting reuptake, breakdown, or by providing direct precursors like l-dopa that can bypass rate-limiting steps can lead to receptor downregulation and issues based on that. If the drugs are extremely helpful for you then you can of course weigh up the pros and cons but I think it's important to keep this in mind if you want to experiment with them.

I'm not sure if semax would have this type of effect (potentially?), I will need to read in the literature more about it. I currently don't use it every day just in case. BPC-157 doesn't seem to work in this type of way, but the research has not been well funded enough where people have comprehensively determined the mechanisms with any of these peptides.

Here is part of the abstract from a paper on BPC-157:

BPC 157 modulates serotonergic and dopaminergic systems, beneficially affects various behavioral disturbances that otherwise appeared due to specifically (over)stimulated/damaged neurotransmitters systems. Besides, BPC 157 has neuroprotective effects: protects somatosensory neurons; peripheral nerve regeneration appearent after transection; after traumatic brain injury counteracts the otherwise progressing course, in rat spinal cord compression with tail paralysis, axonal and neuronal necrosis, demyelination, cyst formation and rescues tail function in both short-terms and long-terms; after NSAIDs or insulin overdose or cuprizone encephalopathies were attenuated along with GI, liver and vascular injuries.

I'm not sure how you could access peptides most easily - maybe you could ask @mitoMAN , I believe he is also in Germany. It might be possible to directly order from China, this is by far the cheapest route.

 

[Martin aka paused||M.E.]

Wow.. Just wrote out a reply with links and the page timed out and refreshed and it all disappeared! So annoying!

As @Irat said, increasing the amount of dopamine either by inhibiting reuptake, breakdown, or by providing direct precursors like l-dopa that can bypass rate-limiting steps can lead to receptor downregulation and issues based on that. If the drugs are extremely helpful for you then you can of course weigh up the pros and cons but I think it's important to keep this in mind if you want to experiment with them.

I'm not sure if semax would have this type of effect (potentially?), I will need to read in the literature more about it. I currently don't use it every day just in case. BPC-157 doesn't seem to work in this type of way, but the research has not been well funded enough where people have comprehensively determined the mechanisms with any of these peptides.

Here is part of the abstract from a paper on BPC-157:



I'm not sure how you could access peptides most easily - maybe you could ask @mitoMAN , I believe he is also in Germany. It might be possible to directly order from China, this is by far the cheapest route.

I can order BPC-157 but if I’m not wrong @mitoMAN did not notice any improvement.

yes as I said earlier: I already tried it with supplements and it didn’t work.

It's said but I don't see any choice. I can't count what I all tried in the last nine years. And finally I found sth. And yes, tye risks overweight diapers, artificial feeding, depressed parents, immobile and 100% bedridden, brutal suffering due to crashes... Could go on for weeks

 

[GlassCannonLife]

I can order BPC-157 but if I’m not wrong @mitoMAN did not notice any improvement.

yes as I said earlier: I already tried it with supplements and it didn’t work.

It's said but I don't see any choice. I can't count what I all tried in the last nine years. And finally I found sth. And yes, tye risks overweight diapers, artificial feeding, depressed parents, immobile and 100% bedridden, brutal suffering due to crashes... Could go on for weeks

Yeah that's true. I know he didn't find it helpful but everyone responds differently. I've been taking it a little more than a week and it has made me a bit more robust so far and improved (resolved? Too early to tell) my IBS symptoms.

Yeah it makes sense when that is what you're dealing with. I hope whatever you try helps you man, I wish you all the best.

 

[Martin aka paused||M.E.]

Wellbutrin has already stopped working.

I've heard that before that it only works for a few weeks but this is very disappointing. On Friday I could listen to music and I ate a little bit. This wasn't possible for six months.

Fortunately, I know in which direction I have to look. But it really feels like my brain always seeks for homeostasis.

Edit: I think about trying Bromantane. It could prevent desensitisation.
If sb has experiences with it I would very much appreciate any input.

 

[GlassCannonLife]

Wellbutrin has already stopped working.

I've heard that before that it only works for a few weeks but this is very disappointing. On Friday I could listen to music and I ate a little bit. This wasn't possible for six months.

Fortunately, I know in which direction I have to look. But it really feels like my brain always seeks for homeostasis.

Edit: I think about trying Bromantane. It could prevent desensitisation.
If sb has experiences with it I would very much appreciate any input.

By the way I was reading today on the peptides subreddit and while some people run BPC-157 for extended periods (all year for a few people..?), others recommend cycling and have observed tolerance developing over time.. No easy wins for us it seems! Have to tread carefully everywhere..