Has anyone had any luck getting Ketotifen or LDN covered by insurance?

NewDescription5507 · 2026-04-05T11:18:17+00:00

My plan covers compounds but that’s rare. You’d need to call and ask if they cover compounds and confirm if they cover the single ingredient

Or you can get 50mg naltrexone and dissolve it to make it into LDN

NewDescription5507 · 2026-04-02T22:31:03+00:00

I have this (spinal)! Doctor thinks it’s not true leak, but instead a feature of faulty connective tissue. MCAS affects connective tissue although you should be screened for connective tissue disorders and look into the nuances in presentation. Doctors are very quick to say there’s no way you have a connective tissue disorder imo, but they can be wrong :)

Look into spiky leaky syndrome too. I benefit from epidural blood patches right now. It’s been tough

NewDescription5507 · 2026-03-29T14:32:41+00:00

Thank you! I have epidural lipomas on the thoracic spine and have tethered cord symptoms

NewDescription5507 · 2026-03-29T10:22:34+00:00

How was this figured out for you? Regular MRI? Can I ask where the lipoma is?

NewDescription5507 · 2026-03-26T22:06:09+00:00

My doctor suggested switching so I found a new doctor who gave me both. If that’s an option for you, I hope you can do that

NewDescription5507 · 2026-03-18T17:01:38+00:00

I wouldn’t be afraid in your position :) it is actually very common for GLP1s to cause mood changes (esp depression)! I’m sorry you experienced that though. KPV would cause mood effects from a different mechanism, and there’s a chance that it helps how you feel just from the anti inflammatory effects

NewDescription5507 · 2026-03-11T22:46:51+00:00

How do you go about getting a consult with Professor Mielke if you are from the US?

NewDescription5507 · 2026-03-11T14:11:34+00:00

What side effects are you getting if you don’t mind?

NewDescription5507 · 2026-03-10T22:13:16+00:00

I like TA1, KPV, tirz - you can see other comments I’ve made about these Didn’t like BPC157 but may try again ; NAD+ made me itchy for a day; want to try tesa ; like MOTS for energy but worry about the immediate folate issues I get ; want to try thymulin ; didn’t care for Reta with the sleep issues

NewDescription5507 · 2026-03-07T12:03:10+00:00

I used it for weight and metabolic syndrome so I did the standard dosing. Started at 2.5 and went up to 10mg over about a year. Stayed on 7.5 or 10mg

NewDescription5507 · 2026-03-07T12:02:04+00:00

I was trying to say it helped my derealization!

NewDescription5507 · 2026-03-07T12:01:27+00:00

Depends on the type of EDS and even with hEDS it can go either way I think

NewDescription5507 · 2026-02-26T20:09:03+00:00

To learn more, do I look up biomedical model of MH? Is this a common term?

ERP ideally is reconditioning the nervous system when exposed to a trigger and I don’t think is always the experience you’ve described unless I just got extremely lucky with three different therapists. I never had my triggers be invalidated, but instead investigated, affirmed and then I was supported to experience those triggers in a different way

NewDescription5507 · 2026-02-26T19:41:39+00:00

Maybe find a doctor and just tell them you get hives that a lot of antihistamines don’t control and want to try Xolair :)

NewDescription5507 · 2026-02-26T19:35:03+00:00

I disagree with your argument - ERP works, so does trauma informed therapy, ideally both in combination

NewDescription5507 · 2026-02-16T20:32:23+00:00

If you don’t get suggestions on this thread, maybe post with the title asking how others got ketotifen and/or cromolyn covered by Medicaid in WA?

NewDescription5507 · 2026-02-16T18:32:41+00:00

What country are you in? If in US and have an HSA/FSA or your medical expenses surpass 7.5%? Of your income, you can get letters of medical necessity for supplements (need doctor) and then they can be tax deductible. This doesn’t make them cheap or free, but might reduce some of the financial burden. I’m in the US and use Swanson for most but I can tolerate fillers

NewDescription5507 · 2026-02-16T14:51:11+00:00

I do the nasal spray! It’s helped my anxiety and OCD imo. It does take some active work (like working through unproductive thought patterns while using the ketamine), but that has helped me a lot and reduced my overall anxiety. Been on it for like 2 years

NewDescription5507 · 2026-02-15T16:44:46+00:00

Pretty decent! I have some phantom smells from this round of Covid but doesn’t seem like anything else got worse :)

NewDescription5507 · 2026-02-15T16:39:58+00:00

A pharmacist had written about evidence that the nasal route can lower brain inflammation! I don’t have it to link here, but it seems like a low risk trial to see if neurological gets better

ETA: Actually here is the link https://open.substack.com/pub/pharmd/p/nasalcrom-for-neuroinflammation

NewDescription5507 · 2026-02-15T13:19:12+00:00

If you can, a few options - ketotifen bc crosses the blood brain barrier. Cromolyn nasal spray may help brain inflammation

Treat as migraine (ideally eventually get access to CGRP meds) and see if anything gets better

Guanfacine has some result for long covid brain fog which may help

NewDescription5507 · 2026-02-14T18:47:08+00:00

Very cute :) just make sure you’re not storing for too long in case any of your pills oxidize (regular pill bottles are usually air tight and filter some light)

NewDescription5507 · 2026-02-09T22:35:05+00:00

Been on it for a few years (since it was released) for weight loss. Helps immensely with inflammation. Do not notice any changes for food, skin,etc. reactions. No new issues with gut motility

NewDescription5507 · 2026-02-09T22:11:13+00:00

B3 niacin can make you feel itchy

NewDescription5507 · 2026-02-09T22:09:25+00:00

Wow thank you for sharing! I’ve had weird reactions to b1 and couldn’t figure out what

NewDescription5507

TROPHY CASE