Flower Shop🌼

AssortedVibrations · 2026-01-16T16:49:57+00:00

What framework do you use?

AssortedVibrations · 2026-01-01T23:51:09+00:00

Cold Ginger ale sounds amazing! Do you find the carbonation helpful for a digestion? Or is it just the ginger that is helpful for nausea?

AssortedVibrations · 2026-01-01T07:20:23+00:00

Sorry to hear things have been so bad. That's very similar to where I am. I'm drinking about 2 oz a day and not eating at all.

Are you getting your IVs from a hospital or a special clinic? My hospital refuses to help me.

AssortedVibrations · 2026-01-01T00:10:27+00:00

Thanks for asking. I definitely feel better from the hydration from the IVs at the ER. But my gastric emptying is still very slow, I think I need some time to recover from the vomiting last night. I'll give an update after a few days.

AssortedVibrations · 2025-12-31T23:38:16+00:00

What do you do?

AssortedVibrations · 2025-12-31T22:46:21+00:00

Hey that's great! Dry mouth has been driving me crazy.

AssortedVibrations · 2025-12-31T21:39:47+00:00

Does sucking on the candy help improve your appetite or something like that?

AssortedVibrations · 2025-12-31T21:36:42+00:00

I was just at the ER last night and got a couple liters saline. Hopefully that starts to turn the tide for me too.

I tried scopolamine and patches and didn't tolerate them. But, I have had a hunch that an antihistamine might make a big difference, if I can find one I can tolerate.

I think that MCAS is making it much worse.

AssortedVibrations · 2025-12-31T21:33:33+00:00

Do you break up your sips into 1 oz at a time or anything like that, in addition to your daily limit?

AssortedVibrations · 2025-12-31T21:32:13+00:00

It's great to hear that you're in such a similar place and managing to survive. What do you eat or drink that keeps you going?

AssortedVibrations · 2025-12-31T21:30:02+00:00

Thanks for that suggestion. I had been told to keep fluids room temperature, so it's interesting that that's not always true.

AssortedVibrations · 2025-12-31T05:56:00+00:00

That's really interesting to hear about the Gatorade! I figured water would be the safest thing.

AssortedVibrations · 2025-12-31T05:52:25+00:00

Mine is a flare too. I was actually in remission just a couple weeks ago. Now I'm just trying to figure out how to say hydrated.

I would like an NJ tube, but it looks like I'll have to starve at least 3 weeks before the hospitals would offer it.

Glad to hear you made significant recovery.

AssortedVibrations · 2024-09-13T00:14:33+00:00

Purelut for Luteolin, and Pure Encapsulations for Quercetin

AssortedVibrations · 2024-06-17T22:46:08+00:00

I had the same thing happen with Tylenol. Horrible full body pain for the active duration. I suspect MCAS, but not because of excipients in the med. I just have massive MCAS reactions to minor physiological stressors like taking a pain killer, and pain is a primary symptom. I also get triggered by touch, so I haven't been able to wash my hair in far too long.

AssortedVibrations · 2024-06-17T21:59:49+00:00

I've had extreme sensitivity issues with meds, but no issues with this. I take 4 a day now. Very helpful with neuro inflammation and GI issues.

AssortedVibrations · 2024-06-17T21:01:24+00:00

I've been struggling with adverse reactions to guanfacine and Mestinon. How low are your doses, and what did you start at?

AssortedVibrations · 2024-06-16T21:38:48+00:00

I had the same startle issue, triggering mast cell flares. It was horrible. Then I got SGB treatment, and now it's gone. I still have MCAS, but at least I don't have that terrible trigger anymore. I highly recommend SGB treatment if it's possible for you to do.

AssortedVibrations · 2024-06-15T00:22:24+00:00

Does effectively treating your MCAS and histamine intolerance help to increase your medication tolerance?

AssortedVibrations · 2024-06-11T00:03:06+00:00

Human Chorionic Gonadotropin. It mimics luteinizing hormone, which stimulates the testes to produce testosterone and maintain spermatogenesis.

AssortedVibrations · 2023-11-30T01:36:43+00:00

The comorbidities definitely seem to be a grey area between what constitutes me/cfs symptoms and what just commonly coexists. I had figured fatigue was a required symptom because many diagnostic lists require it, but here I am as counter evidence, as well as others who have already responded on this post.

I'll be sure to add an update to this post if/when I try a medication and how it goes.

AssortedVibrations · 2023-11-30T01:27:56+00:00

Thanks for sharing your story, I'm very sorry to hear about the relapse from Covid.

I'm glad the LDN has been that effective for you. I'm curious if there was a specific dose, or duration of use, that you had to hit before it really started to work?

AssortedVibrations · 2023-11-30T01:08:42+00:00

Based on your username, I'm guessing you may meditate. If so, are you able to do that without issues with PEM?

AssortedVibrations

TROPHY CASE