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

Learner1

Learner1

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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

frozenborderline

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Learner1 said:
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.
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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

frozenborderline

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Learner1 said:
Given the list of problems you shared, you might benefit from immunoglobulins
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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

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Learner1 said:
It might be worthwhile to match up the abnormal test results you
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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

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Learner1 said:
I just spoke with a mito doctor this week who said SS31 has not been successful for the patients he tried it on.
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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

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frozenborderline said:
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.
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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

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frozenborderline said:
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
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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

Learner1

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frozenborderline said:
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
Click to expand...
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

frozenborderline

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Learner1 said:
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.
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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

frozenborderline

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Learner1 said:
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...
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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

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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.
 
frozenborderline

frozenborderline

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California poppy (not opium despite the name).

Learner1 said:
Have you tried the combination of Setria glutathione and BCAAs for PEM? Maybe eiyb a high quality curcumin? Maybe 2-4g of each?
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Not the exact combo but certainly the bcaas and glutathione separately. The bcaas worked when I was less ill.
 
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