Medication wish list. Meds id like to try if price was no object

[frozenborderline]

Ss31
Ibudilast
Dermorphin
Deltorphin
Xenon
Memantine
Gaboxadol
Imidazenil
Intravenous, low dose flumazenil
Etoxifene
Bromantane

 

[frozenborderline]

Low dose doxycycline

 

[Learner1]

Given the list of problems you shared, you might benefit from immunoglobulins.

It's also possible you might have some infection. Why do you think doxycycline is the answer, though? It's best to know what infection you've got and treat it with the appropriate strategy, before taking a medication that will kill certain constituents of your microbiome.

I just spoke with a mito doctor this week who said SS31 has not been successful for the patients he tried it on.

It might be worthwhile to match up the abnormal test results you have with the treatments that treat them.

 

[frozenborderline]

It's also possible you might have some infection. Why do you think doxycycline is the answer, though? It's best to know what infection you've got and treat it with the appropriate strategy, before taking a medication that will kill certain constituents of your microbiome.

Any antimicrobial can kill good bacteria, but I'm not convinced they're all bad or thay natural ones are always better.

However I want to use low dose doxy to lower mmp-9, and help lower the damaging inflammatory factors affecting collagen, not at all for infection. It seems like with its effects on gum receding it is proven to be helpful with this, not just in vitro

 

[frozenborderline]

Given the list of problems you shared, you might benefit from immunoglobulins

Probably. But given how sick I am that in my doctors hands and none have spearheaded me getting it. I had a good immune response to pneumovax which apparently disqualifies me for ivig

 

[frozenborderline]

It might be worthwhile to match up the abnormal test results you

I agree, I take mcas meds for one, and I take treatments that are palliative in tbi/excitotoxicity, to help w my cci while waiting for surgery. I think these tests are probably tip of the iceberg tho , my hope was that a doctor will look at them as evidence to order more comprehensive tests. Ultimately since there are a few positive inflammatory markers I think its evidence that supports trying to test for a broad range of ones that may affect my connective tissue , which is degenerating.

 

[frozenborderline]

I just spoke with a mito doctor this week who said SS31 has not been successful for the patients he tried it on.

That's a shame. It looks good on paper, almost panacea, but I wonder if it has narrow range of application.

Like ibudilast. I don't actually think ibudilast is miracle drug for me/cfs. however it can apparently help with painspecifically, and also with opioid tolerance. Since I have terrible chronic pain, I am interested in meds that can do that.

 

[Learner1]

That's a shame. It looks good on paper, almost panacea, but I wonder if it has narrow range of application.

Like ibudilast. I don't actually think ibudilast is miracle drug for me/cfs. however it can apparently help with painspecifically, and also with opioid tolerance. Since I have terrible chronic pain, I am interested in meds that can do that.

Your SFN is a clue. Pain can be caused by nervous system dysfunction. Perhaps IVIG would help. Or things that calm the nervous system.

 

[Learner1]

Probably. But given how sick I am that in my doctors hands and none have spearheaded me getting it. I had a good immune response to pneumovax which apparently disqualifies me for ivig

We are on the edge of science. Passively waiting for one's doctor to help while wringing ones hands is not a recipe for success. Doing ones research, arming oneself with facts, then advocating for oneself with one's doctor, or a different doctor if the first one won't help gives one better odds of success...

 

[Learner1]

Any antimicrobial can kill good bacteria, but I'm not convinced they're all bad or thay natural ones are always better.

However I want to use low dose doxy to lower mmp-9, and help lower the damaging inflammatory factors affecting collagen, not at all for infection. It seems like with its effects on gum receding it is proven to be helpful with this, not just in vitro

I'm not sure doxycycline is necessary. You might try omegas 3s if SPM by Metagenicsc or Designs for Health:

https://www.hindawi.com/journals/ad/2011/134592/

Or any of the MMP9 inhibitors listed here:

https://selfhack.com/blog/mmp9/

Plus figuring out what infection you have and treating it appropriately.

 

[frozenborderline]

We are on the edge of science. Passively waiting for one's doctor to help while wringing ones hands is not a recipe for success.

I respect you immensely, but this is not a matter of choice. Pacing is an absolute necessity in severe illness and I have gone above and beyond my limits in the past with how much time and energy I've put into it. I don't want a doctor to do everything for me. But I know many people who have an me/cfs doc that is way more of an advocate for them and way more active in their care than mine whi answers every third email. My obsessive and intense research and having yo do everything myself has cost me precious energy in the past. I don't think its unreasonable to reach out for help or need it. we are interconnected beings. And PEM sets hard limits. In the recent past I extended my energy envelope so much with certain treatments like mold avoidance that I didn't have to worry about pacing as much. But now I do. It's all I have until I find treatments that extend that envelope.

 

[frozenborderline]

Doing ones research, arming oneself with facts, then advocating for oneself with one's doctor, or a different doctor if the first one won't help gives one better odds of success...

I work as hard at this as I can. But I have severe PEM , it's not sustainable to do by myself. At all. Writing these paragraphs took a whole days worth of energy, I will have to rest for about 8 hours now

 

[frozenborderline]

I'd like to note that I've already tried xenon, and its had incredible results, but it's on the list bc of it being a wish to have a larger more continuous supply. I think it's one of those few medications that is as good in reality as it looks on paper. Xenon is incredible, I dont know why we dont use it as much as the central European countries do.

 

[Learner1]

Have you tried the combination of Setria glutathione and BCAAs for PEM? Maybe eiyb a high quality curcumin? Maybe 2-4g of each?

 

[Wishful]

I don't actually think ibudilast is miracle drug for me/cfs.

It didn't do anything for me. I ordered it online, and it wasn't expensive.

 

[mitoMAN]

Most of the listed substanes are relatively affordable. Maybe try working your way through? A few of our group are trying Etoxifine and Imidazenil soon. SS-31 had no success as Learner1 said.
Contact @hamsterman to maybe share an Order of Dermorphin

 

[frozenborderline]

A few of our group are trying Etoxifine and Imidazenil soon

Wow!!! Imidazenil is especially a dream I want it to end my benzo dependence.

 

[frozenborderline]

Contact @hamsterman to maybe share an Order of Dermorphin

Will do

 

[frozenborderline]

California poppy (not opium despite the name).

Have you tried the combination of Setria glutathione and BCAAs for PEM? Maybe eiyb a high quality curcumin? Maybe 2-4g of each?

Not the exact combo but certainly the bcaas and glutathione separately. The bcaas worked when I was less ill.

 

[frozenborderline]

Fusion Surgery