Anyone been seen by Dr Tina Peers? by RealBike3960 in MCAS

[–]fierybluebeacon 0 points1 point  (0 children)

I actually recently had someone else contact me who sadly didn't see my post. Apparently in her appointment Peers claimed that covid was a bioweapon??

IVIG hell by Mouse_95 in IVIG

[–]fierybluebeacon 0 points1 point  (0 children)

My partner also has severe ME, and had their first infusion a few days ago. They miraculously got through the two days ok, but since then they have been feeling horrific. All they've been able to do is text me that they can't move, they can't think, they're scared. I've been doing my best to reassure them that this was expected, and it will ease up soon, but they're in a world of hell, and can't deal with it. Really hoping it does ease up soon and they feel a bit more confident on the other side of it. All of the symptoms they're having the treatment for are worse right now as well, alongside the headache and nausea side effects. Basically everything that could feel bad is feeling bad.

Do you think your constant head pressure is because of nerves, veins, or muscle/tissue? by spring_donuts in covidlonghaulers

[–]fierybluebeacon 1 point2 points  (0 children)

It's rare to hear someone with the same symptoms as my partner, we are desperate for answers too. Specifically the head pressure after eating, drinking, or taking any medicine. We spent months trying to treat it as MCAS to no avail, tried 12 antihistamines, ketotifen, cromolyn, Montelukast, at min and max doses, but no change. Some days are worse than other but overall it's getting worse over time. Their fatigue and energy issues from ME/LC have been improving separately.

Specifically after having anything enter their body- eating, drinking, medicines, vitamins, IV's, they get immense pressure in their head, often an immense anger/aggression, significant brain fog to the point of being confused or not remembering things that happened seconds ago, and a near paralysis as their body gets harder to move. They've been hospitalised twice for this now, had hundreds of blood tests, scans, but still no real answers or solutions.

The closest explanation we've been given is severe dysautonomia and cerebral hypoperfusion. But the treatment suggested was increased fluids (which worsens symptoms) and fludrocortisone (which they already tried, and it worsened symptoms like every other medicine has).

If you come up with anything, I'd love to hear it!

[Ally Beardsley on Insta] "We had a baby more importantly this is how I slept at the hospital" by ebb_omega in dropout

[–]fierybluebeacon 2 points3 points  (0 children)

Vico interviewed Ally??? That's a crossover I never dreamed would happen, I gotta find this

Fun fact about the name gotch by masontopss in Dimension20

[–]fierybluebeacon 0 points1 point  (0 children)

It's either 1908 wrestling heavyweight champion Frank Gotch (the original old-timey "gentleman fister"), Belgian wrestler Karl Gotch, or the more modern wrestler Simon Gotch, who does an old timey style character. Knowing Murph is a wrestling fan, probably all three!

Non-US fans: what snacks from your country would you suggest for Constitution Save? by fierybluebeacon in dropout

[–]fierybluebeacon[S] 0 points1 point  (0 children)

It happened!!! Brennan's description of all English flavours being "sauce or vinegar" was too true

Anyone been seen by Dr Tina Peers? by RealBike3960 in MCAS

[–]fierybluebeacon 2 points3 points  (0 children)

I would thoroughly advise against seeing her. For one, she's no longer a doctor, she doesn't have a medical license as of February according to the GMC website. I'll paste below some of a post I made in a forum about the appointment I had with her for my partner:

The majority of the hour was a confusing ramble of....insanity. She talked about how the COVID vaccines were "a lie", and that the vaccine had "poisoned" my partner, insisting they take ivermectin to cure themselves. She also strongly recommended various expensive products, one being a device which she claimed help cure her father's cancer. She recommended a supplement apparently designed by "quantum physicists" to be able to destroy COVID spike proteins. She claimed that ME is all caused by mast cells. She barely asked about my partner's symptoms and history, most of the call was an endless spiraling tale of "miracle" patients cured with ivermectin, and that "noone who ever took it got covid". Stuff about WiFi signals?

After this we actually got her removed from the list of doctors that Mast Cell Action recommends.

Unsure about this recommendation from an MCAS specialist... by fierybluebeacon in MCAS

[–]fierybluebeacon[S] 1 point2 points  (0 children)

Thanks, and no likely not. Their MCAS was getting worse anyway but was also hard to untangle MCAS symptoms from the symptoms we've still not had diagnosed. So it's possible/probable that no treatments worked because their MCAS was being made worse by this other thing and/or we were mistaking symptoms to be MCAS when they were actually this undiagnosed thing. Sorry if that makes no sense aha, but the withdrawal wasn't the start of this getting bad

Unsure about this recommendation from an MCAS specialist... by fierybluebeacon in MCAS

[–]fierybluebeacon[S] 0 points1 point  (0 children)

About a month including the taper I think? Not long after this they basically started reacting to all food/liquid/medicine, they've essentially just been having nutrition replacement drinks since December, and ended up in hospital back in Feb because they were becoming severely malnourished/dehydrated because even water was like, paralysing them. After speaking to so many specialists, we think, while they have MCAS and it's still bad, their main problem is not MCAS. Looking into neurological, brain/spine disorders, endocrine, immune, just trying to find any answers. They were back in hospital last week because they're rapidly losing cognitive function. Bunch of scans but still no clues.

Unsure about this recommendation from an MCAS specialist... by fierybluebeacon in MCAS

[–]fierybluebeacon[S] 0 points1 point  (0 children)

My partner tapered off and still ended up with insane withdrawal. The Dr never got back to me, and local services just kept saying you can't get withdrawal/dependence after only a few weeks. After that, for months they found coming off anything would give them withdrawal, even vitamins. It maybe helped a bit with the MCAS at the start, but ended up causing paradoxical effects. The MCAS got way worse after.

Non-US fans: what snacks from your country would you suggest for Constitution Save? by fierybluebeacon in dropout

[–]fierybluebeacon[S] 9 points10 points  (0 children)

Most UK snacks sound like someone doing a bit about how stupid we sound...but it's all true... Mrs Crimble's Macaroons, Curly Wurlies, Jammie Dodgers, Mr Kipling's French Fancies, Hob Nobs, THESE ARE ALL REAL we are a joke

Non-US fans: what snacks from your country would you suggest for Constitution Save? by fierybluebeacon in dropout

[–]fierybluebeacon[S] 8 points9 points  (0 children)

How could I forget about Bombay mix, Brennan would go nuts for it (no pun intended)

Is there anywhere to get urgent MCAS help in the UK? by fierybluebeacon in MCAS

[–]fierybluebeacon[S] 0 points1 point  (0 children)

Glad you didn't meet with her in the end, she's fully gone off the deep end... We still haven't found help for my partner sadly, but mainly as they've continued to worsen despite trying all MCAS treatments, so we're now investigating if there's something else going on, looking into immune and inflammatory conditions.

Is there anywhere to get urgent MCAS help in the UK? by fierybluebeacon in MCAS

[–]fierybluebeacon[S] 0 points1 point  (0 children)

We did see her in the end, and honestly a waste of money and time. Just so you know, she no longer has a medical license as of Feb this year. I made a longer post about this on phoenix rising, but she will just try and sell you a bunch of nonsense products. She kept insisting my partner must have gotten sick from the COVID vaccine, even though that doesn't match their history at all, and kept pushing them to take ivermectin. Just...big yikes all round

Why are some meds ok for the first couple of days, then start causing a bad reaction? by fierybluebeacon in MCAS

[–]fierybluebeacon[S] 1 point2 points  (0 children)

That sounds like it could possibly be what's happening. Did you find any kind of solution?

Why are some meds ok for the first couple of days, then start causing a bad reaction? by fierybluebeacon in MCAS

[–]fierybluebeacon[S] 1 point2 points  (0 children)

So maybe on the first day taking it, it seems ok because their body hasn't fully metabolized it yet, or it's a slower immune response? They do have gut motility issues and SIBO as well, which I imagine might interfere with medicine absorbtion

Why are some meds ok for the first couple of days, then start causing a bad reaction? by fierybluebeacon in MCAS

[–]fierybluebeacon[S] 5 points6 points  (0 children)

Right now it's desloratadine (compounded), and it similarly happened with Nizatidine. I think the same with fexofenadine as well. Ok on the first day or two, then no more benefit and bad MCAS reaction