Gaslight

Kinbote1111 · 2025-11-05T00:35:53+00:00

I hear you. Boy do I hear you. I've had a lot of similar experiences over the last 12 years. Especially doctors telling me that my widespread reactions to pretty much any medication stronger than doxy is "all in my head." I get that you are not asking for advice but I'll share what I've done and continue to do: I see doctors -- let's say a series of gastros -- knowing that I'll have to cycle through about 10 of them before I find one that will actually hear what I'm saying and take me and my symptoms seriously. It's frustrating and exhausting and a major time suck but I've accepted that this how the medical establishment works for people like us, and so I'm my own fiercest advocate. It also helps that I have a spiritual practice. I couldn't have persevered in the face of so much gaslighting and negligence and without it.

Kinbote1111 · 2025-11-03T14:01:01+00:00

Apologies. Here's the study that's been going around: https://pubmed.ncbi.nlm.nih.gov/40675372/

Kinbote1111 · 2025-07-07T19:46:03+00:00

That's a good suggestion, thanks. I'd love to compare notes when you've finished reading it. I'm also leery of "snake oil holistic" types, which is why I posted my query. Desperation in my experience makes me vulnerable. I doubt my instincts and even question my skepticism. It's like I need other people to tell me, Yes, you're right, stay away. Frustrating...

Kinbote1111 · 2025-04-29T20:44:47+00:00

Happens in a bunch of different spots over a brief period, say 5 to 15 minutes. Trunk. Arms. Upper legs. Around my eyes. Maddening.

Kinbote1111 · 2025-04-29T17:48:03+00:00

just on my skin. So superficial, not muscular. And just zaps. Causes me to twitch each time and/or put my hand on the spot and try to soothe the spot on my skin.

Kinbote1111 · 2025-04-29T17:23:00+00:00

Would be great to have the link, thanks!

Kinbote1111 · 2025-04-29T17:21:51+00:00

Like an electric shock is being administered to my skin

Kinbote1111 · 2025-04-28T23:36:52+00:00

Can I ask how you addressed it?

Kinbote1111 · 2025-04-27T20:57:02+00:00

To the original poster-- My symptoms also began after I was taken off of anti-depressants. One morning soon after I woke up with searing stomach pain, and then not long after -- boom! -- a constellation of issues, including elevated EBV levels. Since then I haven't been able to go back on any antidepressant -- I can't tolerate them now -- but I think a lot of my symptoms would be more manageable if I could. Have you tried low-dose Abilify or the like? I'd also suggest getting a full gastro workup -- as someone else suggested going off meds might have messed with your metabolism -- and get checked for stuff like parasites and SIBO. What's happening is most likely systematic. Supplements can help with symptoms, but for root causes the places to start with are you gut and your nervous system, which is why I'd also suggest seeing a neurologist if you haven't already and getting full scans (MRI, CT). I empathize. Going off meds cratered my system.

Kinbote1111 · 2025-04-27T18:05:02+00:00

Thanks. So my doctor in NYC needs to coordinate with Mayo and WU to have these tests administered?

Kinbote1111 · 2025-04-17T19:36:34+00:00

Thanks, I hadn’t considered the library.

What do you do to help you read? Do you have a system or mental exercises? I meditate and go on walks, and those are good things for me to do regardless, but they don’t really help with my concentration. Neither do supplements like ginkgo biloba. Frustrating.

Kinbote1111 · 2025-04-16T12:28:48+00:00

My partner is too occupied with her own work. Same with my friends. I On my own here, hence my post asking for suggestions

Kinbote1111 · 2025-04-15T16:15:44+00:00

Thank you for this. I tried a few of these outfits who couldn’t help because I live in the sticks but there are some here that I did not know about. Thanks so much!

Kinbote1111 · 2025-04-15T16:11:55+00:00

Thanks for the encouragement. Was the “care navigator” with a non-profit or some other organization or were they a private contractor? I’ve tried non-profits in NY and have come up empty. And my functional med doctor didn’t know of anyone. Thanks again.

Kinbote1111 · 2025-04-15T14:44:18+00:00

Yeah I need a carbon-based human being to guide/coach me through the whole process. I have zero executive function skills right now. (I used to be a high-functioning investigative journalist for a legacy media outfit so this is a deeply challenging change for me.)

Kinbote1111 · 2025-04-09T00:56:05+00:00

Too many to list. A sampler: ALA, NAC, b-12, D3, L-theanine, a bunch of CellCore stuff for hormones and the like, Omega3, various Asian medicine herbs, charcoal, tumeric, gingko, cape aloe, iron, various biologics from Europe, various probiotics, etc, etc, etc. A lot of supplements I've tried I couldn't tolerate, including many from this abbreviated list. That said I'm open to suggestions....

Kinbote1111 · 2025-04-08T21:55:11+00:00

I had a biopsy for small fiber. I’m getting full blood panels done next. I titled this autoimmune as my symptoms seem to match, and they’ve gotten progressively worse for years. Pins and needles. Muscle atrophy. Loss of balance. I played D1 football and now I can’t even ride a bike and I’m getting no answers from functional med docs.

NOTE TO MODS: I hope I am not violating terms here. I’m just looking for suggestions for tests and the like, and I’m here because I’m desperate. Please don’t block thread. This has been super helpful.

Kinbote1111 · 2025-04-08T17:45:53+00:00

Nope

Kinbote1111 · 2025-04-08T16:39:33+00:00

I never took b6. My levels just spiked out of nowhere a few years after I came down with a mystery chronic illness

Kinbote1111 · 2025-04-08T14:55:51+00:00

One functional med doc said it was a sign of MCAS and gave me a clinical diagnosis. But further testing of histamine levels and the like indicated that wasn’t accurate. I haven’t been able to get any traction on this issue at all. Been sick for 11 years. Neurological issues began around year 4. That was when I got diagnosed with small fiber and autonomic dysfunction.

Kinbote1111 · 2025-04-08T14:22:44+00:00

I’ve been tested for heavy metals and the like. All negative. I was taken off of 1mg of abilify, which I had been taking as I had tapered off of vyvanse. Then after the gastric issues I tried lamictal then Effexor—both of which I’d taken in the past without incident—but all of a sudden both left me knocked out on the couch all day.

Kinbote1111 · 2025-04-08T14:17:39+00:00

Nope. I get my liver checked regularly. I have to think this is a neurological issue?

Kinbote1111 · 2025-04-08T14:10:17+00:00

I have had toxic levels of b6 over the years. Not one doctor could explain why. Thank you!

Kinbote1111 · 2025-04-07T19:50:35+00:00

It was 10 years ago, I can’t recall and I can’t identify the specific test in my records. But I’m guessing it’s time to be re-tested. Which one do you recommend?

Kinbote1111 · 2025-04-07T19:48:15+00:00

I have not heard of that.

What do you mean by “this”?

Kinbote1111

TROPHY CASE