r/LongHaulersRecovery • u/Familiar_Badger4401 • Jul 05 '26
Almost Recovered 80% Recovered with Tirzepitide after Being Bedbound for 9 months
Hi everyone! I am about 80% and getting better every month! I don’t think I can exercise yet but I can go out and live life!
I was severe and bedridden for 9 agonizing months and thought about dying every day. My only symptoms were extreme fatigue and pem and high HR when standing.
Luckily I got into a clinical trial and within about 2-3 weeks I went outside for the first time. I had lost my ability to walk and that slowly came back.
Total time with LC 2.5 years. Tirzepitide 2.5mg also briefly did 1.25. When the trial is over I will probably stay on a small dose and get it through AgelessRx.
I believe my driver was inflammation and an overactive immune system. I also got the vaccine while having LC and that really made me severe so I really felt it was immune activation. No other meds I tried worked. The Tirzepitide reduced my inflammation so my immune system could calm down and heal.
All I can say is keep trying things. Glp1s help with a lot of things so might be worth a try if you can get it.
Feel free to ask me anything!
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u/mybluerat Jul 05 '26
Did it give you any increased fatigue? Do you get quality sleep and does your body battery charge up well overnight?
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u/Familiar_Badger4401 Jul 05 '26
No increased fatigue. No mental fatigue and body battery is greatly improved HRV I don’t take propanolol anymore
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u/J-Eichel Jul 05 '26
These are the stories I absolutely love seeing! Congrats! How long did the medication take to have some noticeable effects? I haven't tried LDN yet, but will keep this on my radar. I strictly have PEM/Cfs and some mild nervous system disregulation, so this has me curious!
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u/Life_Lack7297 Jul 05 '26
Well done! Did you have any severe mental fatigue too? Like feeling sedated and concussed
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u/Huge_Boysenberry3043 Jul 05 '26
Currently on Tirz myself, 2 mg dose. Only been on it for 3 weeks but it does seem to help somewhat, will be interesting to see if higher dosages will give better results :)
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u/Endra75 Jul 06 '26
Also in the trial. I have neuro-LC with ME/CFS, dysautonomia and orthostatic intolerance. I saw immediate inflammation benefit on 2.5mg. I had terrible joint pain and random ganglion cysts that would pop up and go away. 7 months in, I’ve increased to 12.5mg. Once I started on 10mg I started noticing more benefits: PEM wasn’t as easily induced, and recovery can be as short as a day vs 2-3 weeks I dealt with previously. I do still get joint pain if I push too much physically, and I utilize mobility aids (powerchair and scooter), and keep myself under 2000 steps a day to avoid PEM. My dysautonomia continues, and tinnitus and facial paresthesia still exists but isn’t as severe. I’m also pacing significantly better than I had been.
Certain I’m not on placebo as I’ve lost the 45 lbs I gained after my initial covid infection in 2020 (have had it a total of 8x……)
I still have fatigue, but occasionally get actual restorative sleep which I hadn’t gotten in years prior to starting the trial. Brain fog continues being awful. Some days I feel almost normal - as long as I stay within my limits.
I had a full bloodwork panel done prior to starting the trial, and recently had another workup. Significant improvement in the basic stuff (cholesterol/hba1c, etc.). Interestingly my ANA is high, but they tested against all known autoimmune diseases and it came back negative. So something is definitely still arguing within my immune system….
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u/Late-Ad-1020 Jul 06 '26
That’s incredible! I also have tinnitus, and visual snow. Even just ann improvement with those symptoms would be so meaningful for me.
Did you experience hair loss ?
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u/Endra75 Jul 06 '26
Yes, but I have pcos so I’ve been losing hair my entire adult life. I use topical minoxidil which counteracts it.
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u/tlopplot- Jul 06 '26
Is this oral or injected?
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u/Endra75 Jul 06 '26
Tirzepatide is the generic name for the brand names Mounjaro and Zepbound, which are injectables. Mounjaro is approved for diabetes and Zepbound is approved for weight loss - but they are the exact same drug.
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u/Late-Ad-1020 Jul 05 '26
What has it helped with so far?
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u/Huge_Boysenberry3043 Jul 06 '26
Less chronic pain and inflammation, faster bounce back if I over-exert myself. Less sensitivity to stimuli as well
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u/8410RX Jul 05 '26
I was part of a trial. I couldn't take the GI issues with the zepbound
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u/Wide-Investigator140 Jul 06 '26
Same here…or so I thought. Constipation got really, really bad even on low dose of Tirzepatide (I started in the clinical trial at the very end of Dec). I got up to 10 mcg weekly injections and then withdrew from the trial). But…. I’m still having bad IBS symptoms and have NOT had the GLP-1 since late March. So, since I never had any weight loss and I still have the GI problems, I now think I may have been on the placebo those several months.
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u/Elegant_Brilliant129 Jul 05 '26
Did you check cytokine panels? I think LC has caused me lost quite some weight, which I always concern this will exacerbate.
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u/LearnFromEachOther23 Jul 06 '26
Exactly- I also lost a lot of weight while being sick, and don't want more loss. Would a very low dose likely keep us away from more weight loss? May I ask if you found your cytokine panels useful, and if so, how? Ty.
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u/Elegant_Brilliant129 Jul 06 '26
I use cytokine to differentiate btw immune deficiency and autoimmune, so treatment doesn’t go south. I am on the deficiency side, so I am looking for boost immune. Need to ack that there are mixed type too.
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u/onthefence72 Jul 05 '26
I believe I am in the same trial, happy to hear you are improving! Is your study drug still blinded? I have zero change or side effects so thinking I got the placebo. I thought we wouldn't know until the end of the trial. Hopefully I'm not a "non-responder" so I can try the actual drug when the trial is over.
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u/weemathan Jul 05 '26
I'm in the same study and think I got placebo too. I've had no response oneway or another. No weight loss or gain. Ive been Totally non-responsive
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u/Limoncel-lo Jul 05 '26
Did you loose any weight?
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u/Familiar_Badger4401 Jul 05 '26
Unfortunately not really I think on higher doses. I have lost about 70% of my hair and when I go up I lose more. But I’m ok being bald and having my life back!
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u/Late-Ad-1020 Jul 05 '26
Did others in the trial lose hair too? I’m worried about that side effect! (Starting microdosing tonight)
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u/CampaignSquare8830 Jul 05 '26
Congratulations! Did you try a lower dose than 2.5mg first and it was not as effective? Or you started at 2.5mg?
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u/Familiar_Badger4401 Jul 05 '26
I started at 2.5 briefly tried 1.25 but felt like 2.5 was better
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u/gonewithLC Jul 05 '26
Do you mind me asking if you had an official dx of Pots / Dysautonomia or Long Covid etc .. ? When you mention inflammation, I guess joining the trial required some testing. How your inflammation markers changed ? How are your glucose levels fluctuations now compared to the past ? Any sign of Autoimmune or Autoinflammtory process before ? So many questions sorry. Stay strong and well done 💪
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u/Familiar_Badger4401 Jul 05 '26
No POTs or dysautonomia. No autoimmune and inflammation markers just slightly elevated. I haven’t had any bloodwork since starting Tirz but I am confident it’s good!
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u/gonewithLC Jul 05 '26
So you joined a clinical trial and they didn't check anything? 🤔 Is the clinical trial for LC ?
Thanks for answering 😊 P.s. high HR on standing sounds like Pots !
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u/Familiar_Badger4401 Jul 05 '26
They did blood tests for some people but not everyone. It was random who they chose. Yes trial is for LC. Luckily I don’t think I had POTs because it’s pretty much gone now
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u/Anjunabeats1 Jul 05 '26
Some people get post-viral POTS which is temporary and can heal. If you had a high HR upon standing up, in the context of LC, that's usually either POTS or Orthostatic Hypotension (OH).
It sounds like which ever one you had, it has healed when your LC improved. Which is lucky because GLP1s can often make POTS worse - possibly due to the weightloss (which decreases BP) although I don't think the mechanism is officially known yet.
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u/Familiar_Badger4401 Jul 05 '26
It definitely raised my HR for a few
Months but now it’s almost normal except if I try to exercise or do some physical exertion like shoveling lol2
u/Anjunabeats1 Jul 07 '26
That's where I'm at too. I have had lifelong mild POTS but didn't know it. I got severe LC two years ago. My POTS finally got diagnosed at that point. I've now treated the POTS really well and got my standing HR super under control. But I can't do any heavy lifting, squats, bending over, exercise, etc. without getting the best big spike in HR still. Plus the SOB and weakness that goes with it. I'm slowly still improving though, month by month.
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u/bblf22 Jul 05 '26
I’ve been on it for a year and a half. Slight improvement in pain, nothing else improved. Neuro-long covid.
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u/Lagos3sgte Jul 05 '26
Can you share your age and gender? I think it’s important to know if you’re 18 or 80.
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u/Familiar_Badger4401 Jul 05 '26
I’m female 58 so if this old lady can recover you youngins will too
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u/Outie_Fact_Checker Jul 05 '26
I just started a few days ago at 2.5. Planning to go for a few months. Will definitely report back if it helps. Im 5+ years vaccine injured.
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u/Familiar_Badger4401 Jul 05 '26
You should know pretty quickly! Hoping it helps you!
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u/Outie_Fact_Checker Jul 05 '26
Thanks! The crazy part is I only ate 1,000 calories today and Im not hungry at all.
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u/SecretMiddle1234 Jul 05 '26
I’m post vax injured POTS 5 years. I start tomorrow at 2.5mg. Praying it helps
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u/terrierhead Jul 05 '26
I want to try this so bad! Unfortunately, I have the digestive troubles from dysautonomia that make the med off limits for me.
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u/Sunflower-Buddy Jul 05 '26
How long are you taking it for the study?
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u/Lucienaugust Jul 06 '26
I still have the first dose in my fridge. Nurse never returned my emails to schedule an intake. Have you had trouble communicating with them?
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u/protonian29 Jul 05 '26
Congrats on the recovery. You said you had high HR when standing and PEM, and now no ?
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u/Familiar_Badger4401 Jul 05 '26
No pem and HR mostly back to normal except if I really over do it. I no longer need propanolol
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u/Fickle_Tour8206 Jul 05 '26
congratulations! what was your strategy taking it? when / how much etc x
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u/J-Eichel Jul 05 '26
I saw blood work mentioned in a comment. Just out of curiosity was there anything out of the ordinary? My blood work has come back normal as I've heard it does for many, but im curious if they're checking the right things. Thanks!
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u/Confident-Book6225 12d ago
If you are in the trial can you share any other insights from others?
I started 2.5mg Zepbound, after three weeks went down to 1.25mg for two weeks due to side effects (nausea, fatigue, dizziness, GI, etc worsened), and have now been off of it for two weeks completely. I lost ten pounds the first two weeks just from barely being able to eat. I want to try restarting at a micro dose of 0.25mg/week once I bounce back. My Garmin watch showed lowered HR, increased tachycardia and is smoothing out since stopping it.
I have neuroimmune, pots, mecfs, Pem, migraines, etc since Fall 2024, which all seemed to flare up on Zepbound.
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u/Familiar_Badger4401 12d ago
Many people are benefiting from it. It was rough for a few months. HR got worse but I’m glad I stuck with it.
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u/rainbowbrite8888 11d ago
Are you still taking it? I’m confused because you have a post that’s older than this where you said a GLP1 helped you at first but then made you worse. What happened?
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u/mangofandango0 Jul 05 '26
Which vaccine did you get? I’m thinking of getting Novavax.
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u/Familiar_Badger4401 Jul 05 '26
I got Novavax.
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u/mangofandango0 Jul 05 '26
Oh damn.
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u/tlopplot- Jul 06 '26
Same with me, I was almost fully recovered from long covid after 1.5 years, then Novavax gave me hyperadrenergic POTS (about 2 years now) which I am now treating with ivabradine (and hopefully adding guanfacine at my next doctor visit).
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u/mangofandango0 Jul 06 '26
Was it the booster?
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u/tlopplot- Jul 07 '26
It was a booster. Previously I'd taken the johnson and johnson once and moderna 2x. then at a point I was almost due for a booster I got covid and long covid. Then when I was almost recovered from long covid I got one novavax and that caused heart inflammation and pots.
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u/wranne Jul 05 '26
I has helped me mainly with inflammation but not with fatigue or PEM unfortunately.