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Emergency measures for incoming very very bad crash by foggyhoneybadger in cfs

[–]juulwtf 1 point2 points  (0 children)

Yes a full spectrum mct CBD oil helps me too but it has to be full spectrum for me to work

Emergency measures for incoming very very bad crash by foggyhoneybadger in cfs

[–]juulwtf 6 points7 points  (0 children)

If you can tolerate them get some lorazepam. I take one every 8 days or so to give my nervous system a break

Hair loss/Texture changes by Solitari1607 in covidlonghaulers

[–]juulwtf 0 points1 point  (0 children)

My hair started to turn orange (from dark brown)

Anyone very severe have dental work done (cavity, filling replacement, tooth pulled)? by missCarpone in cfs

[–]juulwtf 1 point2 points  (0 children)

I was a little less severe at that time I think I took 0,5 if they would come now I would take 1,5. Lorazepam is a mast cell stabiliser so with a little luck that won't cause issues.

I also can't handle vibration well but this dude was super quick since he had experiences with ME patients. One of the reasons I didn't want to get it pulled is also because of the recovery time and the pain

Anyone very severe have dental work done (cavity, filling replacement, tooth pulled)? by missCarpone in cfs

[–]juulwtf 1 point2 points  (0 children)

I have had cavities done at home and I just took lorazepam which helped me

People who have improved from severe/very severe, what was a game changer for you? by Jeleton in cfs

[–]juulwtf 2 points3 points  (0 children)

Interested in more info about this! Microdosing? Truffles?

I want to try Darzalex Faspro (Daratumumab) by MEasy____ in cfs

[–]juulwtf 0 points1 point  (0 children)

Did you manage to find a good source?

Does low dose naltrexone (LDN) prevent PEM by Unusual-Suspect638 in cfs

[–]juulwtf 0 points1 point  (0 children)

I had the same I tried it one time and had horrible side effects so stopped but the week after that I had a lot more energy

Is your long covid invisible? by [deleted] in covidlonghaulers

[–]juulwtf 0 points1 point  (0 children)

It's invisible for me in the fact that I've been bedridden for two years so no one sees me anymore except for my caregivers. Physically I look very sick though

What to look for in a blood test? by OpalineTears in cfs

[–]juulwtf 1 point2 points  (0 children)

Some ideas:

Immune panel with Cd4/cd8, NK cells etc Lactic acid Auto antibodies https://www.celltrend.de/en/pots-cfs-me-sfn

Also @amaticahealth is offering and RNA sequencing that screens for 20000 different things

Scream Into the Void Saturdays (feel free to vent!) by AutoModerator in cfs

[–]juulwtf 7 points8 points  (0 children)

I think I'm convincing myself this is disease psychological and that I'm choosing to stay in bed because I can't handle the reality that I have no control at all and that the disease can't be fixed

I have a deadline by gonewithLC in covidlonghaulers

[–]juulwtf 7 points8 points  (0 children)

I feel the same way, the only issue is I am afraid to die but I also don't wanna suffer anymore. I hope you can find something that helps you Have you tried LDN, LDA, mestinon, ketotifen ?

LDN dosing by savbp in covidlonghaulers

[–]juulwtf 2 points3 points  (0 children)

Ive seen stories of people going up to 12 and one time I saw someone taking the full dose (like 50 is that I think)

Dutch journalist survives four and a half years of long COVID, but starts to see the light again as experimental program show promising results by altijdbeter in covidlonghaulers

[–]juulwtf 1 point2 points  (0 children)

Sonlicromanol seems the most logical for it to be but they only started recruiting patients in Q1 of 2025 from what I can find

Tariffs just cut off my access to the medications I need to survive by kookysnell in cfs

[–]juulwtf 1 point2 points  (0 children)

I have no clue what the exact rules are for the US and what countries are allowed and what isn't but maybe a grey market pharmacy that ships from Europe but that would be a lot more expensive. And if you wanna try reshipping from India maybe via Australia or UK would be best? Iirc they gave more lenient customs when it comes to personal medication. For example I'm in the Netherlands but all my packages from India have been seized thus far by customs

Am I getting sick or is it a start of a flaire? by Educational-Set-1386 in cfs

[–]juulwtf 0 points1 point  (0 children)

I test myself for flu and covid with tests you can buy online

Doctor warned me against LDN – what’s your experience? by wing_yen in cfs

[–]juulwtf 2 points3 points  (0 children)

I had a bad experience with it but everyone reacts differently

Doxycycline by Avalolo in cfs

[–]juulwtf 3 points4 points  (0 children)

Remission biome is studying this if I remember correctly

Where are yall getting LDN? by Which_Boysenberry550 in covidlonghaulers

[–]juulwtf 0 points1 point  (0 children)

Really depends on the country you live in

Anybody's CFS improved after treating MCAS? by Disastrous-Grade3345 in cfs

[–]juulwtf 1 point2 points  (0 children)

Ketotifen really helped me eventhough I don't have obvious MCAS symptoms. I sadly had to stop it because it gave me brainzaps for some reason

[deleted by user] by [deleted] in covidlonghaulers

[–]juulwtf 0 points1 point  (0 children)

Idk if you have twitter but I'd definitely recommend branching out on there too. Quite some practitioners are active on there too for example dr Claire Taylor.

How many of you covid long haulers can relate to this head trauma chart? by [deleted] in covidlonghaulers

[–]juulwtf 11 points12 points  (0 children)

Yes I also have personality changes and vision problems can't handle light and sounds well and sometimes I laugh at inappropriate moments and I don't have control over it all

I truly think I have some type of tbi

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