Travllr
Explorer
With everything she's been through, I honestly can't keep track anymore.amosmylove said:
Has a lupus/ANA blood panel been run on her? I would seek out a rheumatologist.Travllr said:
Neurologists are extremely scarce where we live. The specialist she currently visits is actually the same doctor who, 6 years back, diagnosed her with Parkinson's—a diagnosis that was ultimately ruled out just 1.5 years ago.amosmylove said:
Correct, though a decent number of uncommon signs exist that tend to make diagnosis relatively easy. Qualifying only requires a handful from each group. In 1 category I show 12 of 14 markers when just 3 are required, and I meet the remaining 2 criteria as well. From what I understand, that level isn't especially common.Travllr said:
She's leaning toward that now, but since no biomarkers exist for it, blood work won't reveal anything. It falls into the category of conditions that get diagnosed only through symptoms, once every other possibility has been ruled out.amosmylove said:
Might hypermobile Ehlers-Danlos syndrome be a possibility for her? I'm only throwing it out there since it's tricky to identify, and both chronic pain and neuropathy tend to go along with it. I have it myself, along with those same problems.
Regarding the shots, truthfully, if she could just push through it, there's a decent possibility that Bpc157 and tb500 might change everything for her. If the needle itself is what bothers her, numbing cream is worth a try. For me, Bpc157 has been completely transformative. I'm also on kpv and am checking into cartalax, though I haven't gotten any yet.
She's fed a bunch of details into ChatGPT, and what comes back is Lupus, EDS, plus some other conditions that escape me right now. The doctors, though, have ruled out both Lupus and EDS — even though genetic testing pointed toward hypermobile EDS. PEA isn't something I know anything about. I'll need to check into that.lessthanhalf said:
When it comes to peptides that genuinely have solid evidence behind them for easing chronic pain, GLP-1s are likely the strongest by a wide margin — but she's already using those. For the rest, real human trial data is either nonexistent or very thin, with one exception: a human study of ara-290 in neuropathy. Even so, what's really needed is a precise clinical diagnosis from a seasoned expert clinician. If testing yields nothing, the best outcome may simply be being told the symptoms or findings aren't specific enough yet to pin down a definitive diagnosis — which, unfortunately, does happen. Attempting to research or treat symptoms without a firm diagnosis is a long way from ideal.
A well-prompted ChatGPT, given input from someone with medical experience, can be remarkably adept at identifying rarer conditions — in some studies possibly outperforming doctors. That said, it can also run away with certain ideas; at one point it spent quite a while telling me a rash I was trying to figure out looked like early t-cell lymphoma. Still, it can be quite helpful for surfacing possibilities you hadn't considered.
Not a peptide, but a supplement with unusually strong human clinical trial evidence for effectiveness, plus solid supporting preclinical data, is PEA (palmitoylethanolamide). It can be quite beneficial for chronic pain and has no known side effects — which is highly unusual. If you do try it, though, be careful about what you purchase. Nearly all the options on Amazon US are significantly underdosed relative to what's advertised; one I bought claimed 1400mg of ingredients but the pill weighed only 300mg.