[myth2018]

I'm going through a similar investigation. EDS + ME/CFS are the main suspects. Could live with the symptoms for very long, but they got too severe after covid (otherwise I would probably still be living with them).

Is the treatment working out well for you?

[cjbgkagh]

I’m pretty much back to 100% I just get the occasional slump but I can’t be sure that isn’t from working too hard.

For the IL-1B I take high doses of D3, TUDCA, and DIM. For the dysautonomia aspect I take Low Dose Naltrexone, a lower dose of modafinil in the morning and amitryptiline at night. I prefer weaker psychopharmacology ligands as it’s preferable to work with the natural rhythms of the body instead of fighting them.

I have a strict near zero sugar diet that’s high in kale. I take a low dose of semaglutide (ozempic) which has been one of the best meds I’ve tried. I make sure I get enough UV exposure. I’ve done Test Cyp and Ipamorelin/ModGRF and they do help a lot but I stopped taking them when semaglutide worked so well. I highly suspect people with hEDS are highly sensitive to semaglutide and should start and stay on much lower doses (1/10th) otherwise they’re near guaranteed to have a bad time.

I’m mostly interested in the TNXB subtype of hEDS which seems to have some weird comorbidities, like an intolerance to noise, a touch of ADHD, obstinate personality, difficulty falling asleep, local and general anesthetic resistance, and an unusually high IQ. There is an unusual reaction to medications with most medications working less than expected.

A good list of comorbidities that could help make a self diagnosis; https://ohtwist.com/about-eds/comorbidities

[myth2018]

Glad to hear you are well. Also because that gives me some more hope.

> which seems to have some weird comorbidities

I'm a bit shocked by your list of comorbidities. Not only yours, but also the one you linked to. MCAS is currently among my most pressing concerns, although it seems to be getting under control with H1 and H2 antihistamines + cromoglycate. An anti inflammatory diet also helps, even though I'm struggling to stay completely away from sugar. The psychiatric part calls my attention. I also present some traits of ADHD and ASD, although not enough to complete a diagnosis. Twenty years ago I joined mensa at the 99th percentile, but I do believe my IQ has decreased significantly since then. I can't even remember the last time I had, in my adulthood, my mind as functional as I used to have in my teenagehood, even before covid and the aggravation of the symptoms.

Out of your list, the only item I couldn't relate with were the medications working less than expected. In my case, I usually have stronger effects, both therapeutic and side ones. That happens with vaccines too. However, last weekend I took one for Influenza and the side effects were barely noticeable for the first time in my adult life -- I hope that's a result of the MCAS treatment.

[cjbgkagh]

It's a long list right, most doctors will think you're just being a hypochondriac, that's what they told me and my family for decades. A general distrust of doctors might as well be another comorbidity.

It certainly sounds like a TNXB subtype of hEDS, this is an unofficial subtype, I read about the theory here on HN many years ago and ran with it. With an IQ that high I would take a guess that you have 2 TNXB SNPs. I'm happy to share more details on what has been figured out about these specific genes, I'll add an email address to my account.

I don't think the IQ points have been lost forever, I think I've recovered to my peak and possibly surpassed it with carful management of the meds. I think the general case of child prodigies burning out is simply a case of them not being able to get effective treatment and not an unavoidable innate quality.

Sugar is is still a tough one for me, it tends to give me headaches rather quickly which does make it easier to avoid it, but the desire for candy is always there.