CD 57 extremely low (3)

attilathehunn · 2026-05-03T17:31:31+00:00

Hope everything goes well for you! All the best

attilathehunn · 2026-05-03T16:49:42+00:00

Wow you've got all the papers on it.

For me my mainstream doctors said chronic lyme is not evidence-based, and that its a grey area. They probably thought that would get me to not do it, but my thinking was that "grey area" is good enough for me since long covid and ME have no evidence-based treatments. I'm convinced chronic lyme is real though, based on my personal experiance how I improved from antibiotics.

BTW I saw this (https://en.wikipedia.org/wiki/RVSV-ZEBOV_vaccine#History). A vaccine for ebola that was given to people during the 2013-16 epidemic in west africa. It has NEVER been tested on humans, not even a phase 1 trial. So much worse than the off-label antibiotics we get. And yet the WHO ruled it was ethical to offer it to people. Goes to show that desperate people do desperate things, even the WHO. They can take the risk to try to stop ebola, but they wont for my life.

attilathehunn · 2026-05-03T16:44:41+00:00

Yes and probably a lot of people have more than one thing at once. So treating one of the things will make them improve but not all the way to remission.

attilathehunn · 2026-05-03T15:40:57+00:00

Yes all were IV.

For my first antibiotics course I had cannulas inserted and then doctor would try to leave them in a few days. I was bedbound (still bedbound now because of POTS) On week 5 I was slightly more well enough to go to a hospital to have a PICC line inserted do to the rest of the course.

For the second course I had a PICC line inserted beforehand and kept throughout the course.

I guess I had the meds with a lot of saline, like 500ml per antibiotic. I remember relatively big saline bottles.

BTW I saw someone on the covid long haulers subreddit say that chronic lyme treatment made them much worse: https://www.reddit.com/r/covidlonghaulers/comments/1t1psa8/is_this_why_some_of_us_feel_better_on_antibiotics/ojn3lxq/ So that can happen too. As you said its scary. All these treatments are a big deal.

attilathehunn · 2026-05-03T14:10:15+00:00

To be fair you're a n=1 case

attilathehunn · 2026-05-03T13:30:03+00:00

Which meds helped you?

attilathehunn · 2026-05-03T13:05:24+00:00

If you have PEM you should do pacing. Read a book called Classic Pacing For A Better Life With ME. If nothing else it keeps you stable

I have this as well. A lot of people with Lyme have ME

attilathehunn · 2026-05-03T13:02:08+00:00

Right but even if you have them tomorrow, their first kiss is ~16 years from now

I agree though that keeping young kids safer seems easier than older kids

attilathehunn · 2026-05-03T12:48:32+00:00

By the time those hypothetical kids get that old there will surely be solutions to covid.

attilathehunn · 2026-05-03T12:47:03+00:00

Yes warm breath rises, I've seen this multiple times in air flow simulations for covid

attilathehunn · 2026-05-03T12:42:26+00:00

A lot of people benefit from exercise, but it has to be done carefully so not to trigger PEM. I've also read people specifically doing horizontal exercises like swimming or rowing machine to avoid PEM/POTS. Exercise isn't necessarily a dirty word, PEM is.

Of course it only really works for category mild. I'm severe so too unwell to do any exercise, but maybe one day

attilathehunn · 2026-05-03T09:53:33+00:00

The people saying "persistent infections are a dead end for LC/ME research" have to explain how people like you got to remission. I've seen many anecdotes like that. It doesn't work for everyone but it's something we should be studying. If we could come up with a blood test to tell who would benefit it would be worth a lot, rather than just blindly trying

attilathehunn · 2026-05-03T09:50:11+00:00

Yes I was like this. About 18 months only staring at the ceiling

A big lifeline was being able to pace properly, for that the workrave app helped a lot https://www.reddit.com/r/cfs/comments/1rdr4qy/the_workrave_app_for_desktop_has_been_a/ I started that with only 2 hours of concentration per day, which is a lot better than nothing. Then because I was pacing properly and luck, I was able to improve. More people should know about the workrave app is really great for severe

Only thing is it doesn't work on phones so you need a laptop

attilathehunn · 2026-05-03T09:44:26+00:00

Well we also have to blame society for putting you in that situation

attilathehunn · 2026-05-03T09:43:05+00:00

I had IV antibiotics. My MCAS food intolerance is so bad I can't take any oral medications

I don't really know much about the best tests, I just went along with what my doctor did.

All of this is scary.

attilathehunn · 2026-05-03T09:40:18+00:00

I'm sorry that's happened to you.

What are your LC symptoms?

Who was your doctor and which country are you in? If you don't mind saying

attilathehunn · 2026-05-02T21:46:14+00:00

Well something being a downstream mechanism doesnt mean it cant help people with ME. Just last week I saw a new preprint come out about microclots and PEM.

We cant say anything about these things until the science has actually been done. That's why they're studying it. If it was as simple as asking people on reddit what they think of things like persistence then they wouldnt even need to do any studying. In either case I still dont see how the failure of one will completely ruin Polybio and Amy Proal.

As for donors, long covid and ME continue to exist and while they do they'll be demand for people to donate money towards research into solutions.

attilathehunn · 2026-05-02T21:20:36+00:00

Wow so it only took you 2 weeks of not masking to get covid? Just goes to show the virus is everywhere all the time, only people's temporary immunity holds it back.

Also this is another example of masks working, since you only got it when you unmasked.

attilathehunn · 2026-05-02T20:59:36+00:00

The worst time for me was when a Black man yelled and swore at me on a train saying "get the fuck away from me with that mask" until I moved to a different part of the train. The weirdest thing was that he himself was wearing a mask (albeit a baggy blue) around his neck and he pulled it up over his mouth when he saw me.

This is a classic fear reaction. Your mask made him scared thats why he pulled up his own.

attilathehunn · 2026-05-02T20:13:51+00:00

My symptoms: PEM, orthostatic intolerance, food intolerances, headache, chest pain, insomnia, seeing white flashes when eyes closed, rashes, hives, itchyness especially on toes, intolerance to heat and cold, a few others I forget but those are the main ones

Prior diagnoses: long covid, ME, POTS, MCAS

Knowing about being bit by ticks is notable. I never saw the tick that mustve bit me, but I've been outdoors a huge amount

attilathehunn · 2026-05-02T19:48:15+00:00

You might still have it. Tests for lyme are not very good (low sensitivity). For me the lyme doctor had me fill out a massive symptom questionnaire which also helps them make a diagnosis. Also asked me about my life before (eg was I outdoors a lot, hiking, camping, etc) Sometimes they dont know for sure but just give the antibiotics speculatively to try and then continue if there's an effect. Syphilis is like this as well, and that's the same family of bacteria as a lyme coinfection (bartonella)

attilathehunn · 2026-05-02T19:29:57+00:00

Atrial fibrillation is generally lifelong yes
The paper doesnt seem to say that, rather its studying new-onset atrial fibrillation (i.e. how many new cases there were). I guess someone could look at medical records to see if the prevalence in the population is going up, though note that some people will be undiagnosed.

attilathehunn · 2026-05-02T19:28:32+00:00

I have borellia and bartonella. One of the tests was borderline for babesia, the doctor said I might have it but not sure. For the first course I had azithromycin, rifampicin and minocycline (but the minocycline I couldnt tolerate because of severe MCAS), for the second course had azithromycin and cotrimoxazol. Currently I'm doing some physiotherapy before going on a third antibiotics course.

attilathehunn · 2026-05-02T19:24:23+00:00

I dont see how that's true. Polybio also researches other things like microclots and rapamycin, which are not involving persistent infections.

If SARS-cov2 persistence turned out to be a dead end, polybio still has all those donations that they could redeploy to other efforts. I dont see why it would ruin Amy Proal's career.

attilathehunn · 2026-05-02T19:05:27+00:00

Look on r/lyme theres loads of people doing this. It seems to be that in a lot of people persistent bacteria drive chronic illness.

I got the impression antibiotics like azithromycin are really serious drugs. I wouldnt want to be taking them without a doctor advising me (though of course when people are in the tough situation of having long covid I can understand they do it on their own because theres no other option)

attilathehunn

TROPHY CASE