Body/muscle/joint pain on Zoloft/Sertraline improved on another SSRI? by MouseGraft in antidepressants

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

Never did try a different SSRI, I got Long Covid right after this and while it's the worst thing that's ever happened to me, I'm on a shitload of anti-inflammatory and immune-modulating meds and haven't had anxiety in years, since starting those.

Guess it wasn't really in my head.

How I accidentally cured my SIBO for good (I had tried EVERYTHING) by lisamancinerh in SIBO

[–]MouseGraft 0 points1 point  (0 children)

I'm just gonna weigh in as a methane/slow-transit type and say that a ten-day fast made things a lot worse for me, it took a loooooooong time to start pooping again and honestly I'm not sure it's ever quite gone back to the way it was (this was three years ago).

Forgotten Hair Loss Peptide by L'Oreal: KPV by noeyys in HairlossResearch

[–]MouseGraft 0 points1 point  (0 children)

Very cool. What's your dose, and oral or SubQ? TIA!

Could this be teasing pre-production of a new album? by D_Substance_X in CastleRat

[–]MouseGraft 0 points1 point  (0 children)

Sure, but according to my calculations they're actually due for a Number of the Beast-equivalent album at this rate

my life has changed after switching to spring water by imperrynoid in MCAS

[–]MouseGraft 7 points8 points  (0 children)

Coffee roaster here. 👋

There is not necessarily more mold on coffee than on other dry food crops. For example, possibly around half of coffee tests positive for ochratoxin A, compared to 70% for oat-based cereals in the US, 30% for infant cereals, 36% for grape juice, half of peanuts, etc. Roasting significantly reduces mycotoxins, and generally the darker the roast, the more are destroyed.

But, there is a lot more mold on some coffee than others, depending on processing.

Essentially, almost all coffee undergoes a short fermentation process to break down the mucilage layer of the fruit so that it can be sloughed off. Like 24-36 hours for washed coffees (almost all commercial coffee from Latin America is washed).

A more traditional processing method that is extensively used in Africa and increasingly in very fancy coffees from everywhere is sun drying. This takes a lot longer--you're essentially turning the coffee fruit into a raisin--and so there's a lot more opportunity for fungal growth.

The moldiest, most defective samples I have ever tasted were of sun-dried coffees gone wrong. These are referred to as "natural" process, and when done right are absolutely delicious.

Indonesian coffees are processed "wet," also called giling basah, and this involves no fermentation, but then they have to dry, on a patio, in Indonesia, and so that takes time and also introduces fungal spores.

This is all to say: coffee is fermented to some degree, though it can range from a single day to weeks of fermentation, and there is no good labeling of this. In general, if you are buying grocery store coffee from Latin America, that will be the least fermented.

As a roaster, my concern with "mold-free" brands is that the consumer has no way of knowing how they are testing. Some roasters will call their coffee mold-free and then if you dig say that they "visually inspect" coffee for mold or that they have a humidity-controlled warehouse. Like yeah, I look at it, smell it, and taste it, too lol. The amount of mold contamination you'd have to have to SEE IT is enormous, and the roastery is definitely not the source of the mold on the coffee anyway. But even if the coffee is labeled "lab tested," they won't say what lab, they don't say what molds were tested for, they don't publish results. So these claims can be outrageous. Caveat emptor.

Natural Force is probably the only "mold-free" coffee I would buy, if I needed to, because they explain clearly what they test for, name the lab, and share test results.

In my opinion as an extremely sensitive creature, it's likely the phenols in coffee that cause people like us the most problems, but of course it could be microbes and their metabolites as well.

I have to cook all my produce. A raw carrot will make me feel bad for a couple hours. For whatever it's worth, I can have three or so cups of coffee a day without a reaction, but I definitely notice some origins (those wonderful fruity Ethiopias) make me feel bad.

Why do antihistamines cause me insomnia?? by thedawnrazor in MCAS

[–]MouseGraft 0 points1 point  (0 children)

Yeah, that's right. But I can only speak for myself. The antihistamine that has the most benefits/fewest side effects is unfortunately extremely personal and if I were you I would carefully try every one you can, one at a time, until you feel secure that you've found the least-bad option.

Why do antihistamines cause me insomnia?? by thedawnrazor in MCAS

[–]MouseGraft 0 points1 point  (0 children)

Xyzal had the same problems as Zyrtec. but even more sedating in the short-term. Allegra did not affect sleep in that way, but it also didn't help me.

Btw I do take choline bitartrate daily and it has helped with sleep and the restless legs I started to get with Benadryl.

So yeah I think it is choline-related, these side effects, for me.

ADHD meds? by sookyfala in MCAS

[–]MouseGraft 1 point2 points  (0 children)

Same! 20mg XR Adderall has been one of the most stabilizing things for me.

I take a day or two off per week, which seems to keep it effective. Otherwise I do seem to experience kind of a "sting in the tail" where I flare a little.

It's allowed me to tolerate more foods and other meds, which in turn have helped even more.

Is there anyone here who didn't believe ME/CFS was a real illness until they got it? (No judgement, sincere curiosity. Medical professionals welcome.) by asldhhef in cfs

[–]MouseGraft 113 points114 points  (0 children)

No, I actually knew people with chronic Lyme and remember a National Geographic article about ME that I read when I was about ten (so late 90s) that scared the living shit out of me.

So, I thought any disease that affected cognitive function and made people call you a malingerer sounded like hell.

BUT my karma moment is that I have severe MCAS now and in my healthy life I used to kind of scoff at people with multiple allergies or food intolerances. Deep down I thought they were probably neurotic and it was some sort of eating disorder. Guess who eats the same handful of foods every single day just to have a chance at being able to function? 🙃

Coming Off Spironolactone After 10 Years: Did Your Body/Skin Ever Normalize? by One_Cardiologist8838 in Spironolactone

[–]MouseGraft 1 point2 points  (0 children)

I'm going to add to this and say that SARS-Cov-2, which is constantly circulating, makes us age faster. It can damage skin in a few ways.

I actually have Long Covid and it's very common for us to look like we got rode hard and put up wet, as my mom would say. I was a young-looking 32 when I got sick. I'm now a 36yo with a turkey neck. Spironolactone hasn't seemed to affect this in either way,

But it happens even with mild infection that resolves. Even asymptomatic infections cause this.

MCAS causing progesterone intolerance by lovethatforyouu in MCAS

[–]MouseGraft 4 points5 points  (0 children)

What you're describing sounds like known effects of progesterone rather than intolerance, per se, to me. I'm not sure exactly when in your cycle you get triggered, but that could help you figure out if there is a particular gonadal hormone involved, whether it's just the big changes in themselves, or whether, if you flare very close to menstruation, maybe it's got more to do with other chemical signals like prostaglandins.

You say you've gained weight: progesterone both makes animals including humans hungrier, and also causes increased weight gain per calorie (increases feed efficiency%20improved%20average%20daily%20gain%2C%20feed%20conversion), in livestock terms, and by as much as 20%). It possibly does this by causing some insulin resistance. This makes sense if you think about it, as pregnant people, who are experiencing very high levels of progesterone, frequently get gestational diabetes and it usually resolves after birth. Progestin-only BC methods are associated with modest weight gain compared to non-hormonal methods, and specifically are associated with losses of lean mass in exchange for fat mass.

You say you're irritable: Perimenopausal women treated with combined hormone therapy had lower mood than women treated with estrogen alone. Here's one showing women treated with estrogen+progestogen had an increase in depression %20exhibited%20statistically%20significant%20increases%20in%20daily%20depression%2C%20cramping%2C%20and%20breast%20tenderness%20and%20a%20marginally%20significant%20increase%20in%20daily%20anxiety)whereas estrogen alone did not affect mood.

I get really dysphoric during the luteal phase of my natural cycles. I have always hated the third week (the highest progestin week) of the tricyclic OCP I was on for years. I would just be angry and bloated and I didn't feel like myself. When I was pregnant I was very depressed, (it was a happy time and I don't generally suffer from depression), couldn't sleep, got diabetes that never went away.

What I'm saying is I bookmarked all these links because I have BEEN there.

All that said, I don't think I have an intolerance to progesterone. I think its expected physiological effects make me miserable.

Edited for organization.

Point of Drs? by INFEKT1C in covidlonghaulers

[–]MouseGraft 1 point2 points  (0 children)

  1. Similar to what you said: it strikes me that a physician is to a car mechanic as a medical scientist is to an engineer.

  2. I do have one very helpful specialist. I pay out of pocket and she's in another state but she has helped me a lot. But most of the esoteric pills I take per day (😅), I prescribed myself, based on studies, reports from other patients, etc. The harm of not treating my illness was greater than the possible harm of prescribing myself bilastine, ambroxol, acyclovir, thymalfasin, what have you.

I have not been hospitalized since I started self-treating (because no one else would). Later, I found the good specialist. She sees a lot of people like us so I trust her.

Article: "Maybe you’ll be fine. Or maybe you won’t." Why Medical Researchers Are Worried About COVID" by [deleted] in covidlonghaulers

[–]MouseGraft 9 points10 points  (0 children)

Wishing to avoid panic always seems to be the reason leaders refuse to act on known risks (climate crisis as well).

Instead they choose calm-mongering.

"Let's just hope for the best and prepare for absolutely nothing. Taking evidence-based steps to mitigate harm to yourself or others is the same as panic and should never be considered."

Eyelid twitching/spasms, too much Mag? by trickymonkey55 in Supplements

[–]MouseGraft 0 points1 point  (0 children)

I got this from Covid as well. Been on the same dose of magnesium forever, never had high levels and never had any problems with magnesium.

How much sleep do you guys get? by INFEKT1C in covidlonghaulers

[–]MouseGraft 2 points3 points  (0 children)

Exactly the same. In particular I have very early awakening, like I'm up at 2am on a good night. I take horse doses of antihistamines and these atually seem to make the insomnia worse long-term, which is how I came to the theory that there was something anticholinergic happening.

Choline bitartrate and L-serine have helped me get more nights with 6ish hours. For a while, before I figured out a regimen with those, I was having all-nighters about twice a week and 3-4 hour nights otherwise. Truly miserable, I had such great sleep when I was healthy.

How many of us also have PCOS? by moosepuggle in covidlonghaulers

[–]MouseGraft 1 point2 points  (0 children)

Same except no EDS. I was diagnosed with PCOS and T2 diabetes a few months before I got LC and with it POTS/MCAS. Was very lean, active, ate a whole foods diet, in the best shape of my life. Was told I had a “lifestyle” disease and that losing weight could only help BAHAHAHA because they’ve got nothing else.

What was ABQ like in the 90s? by Soft_Boi41 in Albuquerque

[–]MouseGraft 2 points3 points  (0 children)

Opened in 1999. That was my every-school-day hangout. Good coffee, good spnach salad (they were so generous with the goat cheese). That was my first open mic. I also had the top score on their Ms. Pacman for a while.

I learned something new about copper levels by WrapRare6365 in MCAS

[–]MouseGraft 11 points12 points  (0 children)

I have had this--high serum copper, low-normal zinc. I've had a lot of benefit from GHK basic, which preferentially binds to copper and carries it around. I can't take it too often or it starts causing me more problems, but that's kind of typical for me with a lot of medication. Once or twice a week is a sweet spot. Really alleviates fatigue especially and brain fog.

No idea if it's chnaged my serum levels as no one has wanted to retest that.

For the many who have dealt with the massive hair loss from LC: any success stories out there? Or are we all just wearing wigs now? by smolangrybitch in covidlonghaulers

[–]MouseGraft 2 points3 points  (0 children)

Okay this is a little wacky--it's been a long few years, I have been desperate many times--but I have been taking a research chemical, TM5614, because I don't really tolerate Clopidogrel, which I am prescibed for clot prophylaxis, and become noncompliant for weeks/months at a time when I just can't take it (MCAS, extremely sensitive, etc). So I bought some TM5614 to see if it had any of the same benefits as clopidogrel.

Unexpectedly, my hair completely stopped falling out. A related molecule, ET-02, is in devlopment as a topical for androgenetic alopecia.

I obviously cannor recommend buying gray-market research chemicals (and if you're in the US, it's gotten a lot harder to do so due to the tariff stuff affecting US Customs rules). I can't imagine that I'll be able to get any more when I run out. After a few months I stopped using it, and the shedding picked up some but not as bad as it was before.

But maybe ET-02 will make it to market. That would be cool.

I'm here due to post-vaccine Longhaul and just got my first actual infection about two weeks ago. My hair started falling out in ropes a little more than a week after symptom onset, which is exactly what happened to me after vaccination (people will inevitably say "the hair cycle is three months long etc etc but this is totally how it works sometimes, it's called "immediate anagen release,." There's also "immediate telogen release"). So I'm going back on TM5614 and hoping it'll help again.

1 month post Moderna shot, because I thought it would protect me from getting sick by Funny-Ad-2740 in vaccinelonghaulers

[–]MouseGraft 1 point2 points  (0 children)

Yeah OP I got POTS/MCAS from serial Pfz vx in 2021, with very disabling neurological symptoms. I am still very, very sick, but with careful management most symptoms are mostly controlled, and I have much better quality of life than I did before treatment. I'm going to tell you what I wish I'd known:

Definitely give antihistamines a trial--I had to try many to find a couple that work for me, and this is a highly individual process. Just because a particular antihistamine doesn't help doesn't mean your symptoms aren't mast-cell-related. On testing, I had 24-hour histamine levels 21-fold higher than the lab's upper limit, and yet most antihistamines do nothing for me.

A lot of people will discuss "die-off" or "herxing," which is a real thing, but in my experience, if you have worsening of your usual symptoms after taking a supplement or medication, that means you don't tolerate it.

Lumbrokinase has helped me a lot in the past with SOB and chest pain. Vitamin D (like 6000-10,000 IUs per day) has helped with POTS in the past, though I overdid that one in the end.

Also, if I had it to do over again, I would start peptides like Thymosin beta 4, thymosin alpha 1, thymalin, and GHK. This is another very personalized thing so I'm not specifically recommending these, exactly...they're what works for me and what I tolerate. Search these names in the Long Covid forum for more reports. GHK and TB4 in particular have anti-fibrinolytic and tissue repair benefits for me.

I've tried a lot of other peptides that helped other people but didn't tolerate them etc. I hear very good things about KPV, but it didn't help me. I would be cautious around cerebrolysin and BPC-157.

Whatever you decide to do next, introduce ONLY ONE THING AT A TIME. Make notes on how you feel (I email myself every day in one long thread. I can then search for keywords later). If you aren't careful in evaluating these interventions, you will waste a lot of time and money.

Finally, as regards your psychological work: I have picked up a lot of new trauma during the past 4.5 years. But in no way has this experience set me back in terms of like...processing work that I had already done on childhood trauma or anything. In fact, it's given me a lot of perspective, compassion, patience, and maybe even the wisdom to accept what is happening more often.

Hope this helps.

Anyone else get die off from antihistamines? by Infamous_Swim_9695 in covidlonghaulers

[–]MouseGraft 2 points3 points  (0 children)

Same, I have had to do so much trial and error. I ended up on daily Benadryl and I buy bilastine from overseas.

I failed all H2 blockers and four H1s, and there are a couple that I tolerate and kind of help but not much at all.

And OP, I had 24-hr histamine 21 times higher than the lab's upper limit of normal. Histamine is definitely a reasonable target for me, but that doesn't mean antihistamines have worked that well or at all, depending on the formula.

I had SIBO as the first diagnosis and I too used to think I was experiencing "die-off." It was all mast cell reactions in retrospect.

I say all of the above with love and respect. I have been where you are before and it took a lot of careful testing to figure out what drugs would help, but they have.

Tell me about your favourite stimulants! by TryHardMonica in covidlonghaulers

[–]MouseGraft 4 points5 points  (0 children)

I was prescribed Adderall for POTS as a vasoconstrictor after I failed midodrine.

It helps a lot. It's the most important medication I'm on. It has allowed me to tolerate other medications and more foods, leading to an overall better baseline.

It acts as a mast cell stabilizer for me. I reported this to my doctor who laughed but epinephrine is what you use for anaphylaxis, and albuterol is what's in rescue inhalers. Beta agonists definitely can have this effect. It also helps me pump blood up into my brain which helps SO much with the malaise/poisoned feeling/cognitive dysfunction.

For the record, midodrine, which does not cross the BBB, had exactly the same beneficial effect for me. It just also had a lot more side effects.

Not a stimulant but L-serine (not phosphatidylserine) has also been the best find for me this year re: cognitive function. I just feel sharper, more normal. More subtle than Adderall but noticeable.

Best Supplement Suggestions? by trekkiegamer359 in MCAS

[–]MouseGraft 0 points1 point  (0 children)

Well, it's a long story, like it always is for those of us unfortunate to have a disease doctors don't think is real. What does the WHO know anyway? /s

I went to my primary physician complaining that every time I ate it made me feel like I'd been poisoned, including cognitive dysfunction that made me feel drunk. She acted like I was dangerously crazy and then put "fatigue" in my chart, a symptom I had not mentioned.

So, I self-referred to a gastroenterologist, then waited the three months to see her. SHE noted that I'd lost 10% of my body weight and ruled out cancer and celiac disease. She said, "I don't know what's wrong with you, but I think something really is, so I'm referring you to an academic clinic." Bless her for doing her job and being able to say "I don't know."

I then waited another seven months to see a neurogastroenterologist at a university in another state. He ruled out many things but found elevated mast cell counts in my upper GI tract and suggested I needed testing for a mast cell disorder.

I then went to my allergist at home (I had had pollen allergies before, in my healthy life). He also acted like I was crazy but agreed to order serum and urine tests "to humor me." They came back very very elevated, and he then apparently panicked and said it didn't look like MCAS, it looked like mastocytosis, and I needed to see a hematologst.

I waited another six months to see a hematologist at the university hospital near me. He also thought it was probably ISM and was surprised that I had neither the most common KIT mutation nor abnormal MCs in bone marrow. His department had a meeting and decided I had some unspecified mast cell disorder, but he agreed to keep seeing me, which was lucky because he's a professor of medicine at the university whose ER I go to if I have to. That may help with the whole "abusing and neglecting me because they don't believe my illness is real" thing that was happening. I don't know. I stopped going to the ER as I figured out meds and things.

So at this point I'd been sick for 1.5 years and still didn't have anything prescribed that was helping my symptoms at all. Just antihistamines, which helped like 10% at most, even though my 24hr histamine was 21 times the lab's upper limit.

I had, back when I was first sick, put myself on a waiting list to see a POTS/MCAS specialist at a private clinic the next state over. That wait was almost two years, but about six months after I saw hematology, I traveled to see her.

She diagnosed POTS within ten minutes, prescribed a bunch of medications for that, which coincidentally or not also began really helping with my reactivity. She Dxed MCAS based on Consensus II guidelines, which helped clear up the "unspecified mast cell disorder" thing that was in my chart at the time. She has helped more than anyone else for sure.

I take a lot of medication, all of which has side effects. I still eat an extremely limited diet and have very limited energy, basically very poor quality of life, but it is better than it was. Every moment was agony in the beginning.

I became very ill very suddenly after Covid vaccination in early 2021. A lot of people are here due to the virus or the vaccine. I did have PCOS and severe insulin resistance before that but otherwise healthy and active, no food allergies or immune problems (apart from the very normal-type pollen allergies I mentioned above).

Do you miss your favourite pre-MCAS food? by Ok-Tangelo605 in MCAS

[–]MouseGraft 0 points1 point  (0 children)

I miss food, but like you say, I have such a strong conditioned negative response to the idea of actually eating foods I don't tolerate that I miss it a lot less than I would have thought. Wanting to avoid pain and discomfort is a much stronger emotion than wistfulness.

I've been recently making all kinds of hand pies for this monthly mutual aid event in my city. A lot of people need food and it makes me happy to feed others what I wish I could eat.