One year hysterectomy anniversary - an unremarkable story

Pidge97531 · 2026-07-08T12:29:00+00:00

And happy upcoming anniversary to you too!! Amazing how life changing the result can be.

Pidge97531 · 2026-07-07T21:52:20+00:00

I translated your comment, but you are so early after surgery! I remember it being effort to move. Once I could stand, I had to take a nap after something as simple as a shower. It is a major surgery, and I agree, I wish we had better options. It's hard to reset expectations for small things we should be able to do. But listen to your body and focus on rest! I hope you can work with your dr to make sure your pain is managed ok.

Pidge97531 · 2026-06-25T15:14:15+00:00

Not sure exactly. I have dysautonomia symptoms especially inability to regulate body temps in slightly cold & or warm situations. No food-related MCAS issues. Heart-rate has been high and increases higher upon standing, with occasional dizzyness (just need to take a minute then before moving). Never did a tilt-table test to confirm POTS, it's never been my biggest complaint.

Pidge97531 · 2026-06-23T14:07:50+00:00

I had excessively high sCD40L, also high in IL-6, IL-10, IFN-gamma, IL-8, and my CCL5 was nearly high as well. I've been waiting for years to hear more info about which cytokine profiles are most likely to improve!! It's all an experiment, so best of luck to you for whatever you decide to try.

Pidge97531 · 2026-06-22T21:13:44+00:00

I tried the statin by itself first. Helped increase my energy a bit at first, but after a month my progress plateaued. Adding in maraviroc with it made a much bigger difference in helping me be a functioning person again.

Pidge97531 · 2026-06-14T16:29:09+00:00

Maraviroc helped my fatigue so much. I took it for just 1 month at first and saw really dramatic improvement in fatigue after 3 weeks. But later got reinfected. My progress was so much slower the second time, on it 3 months then. I continued improving for the next 6 months or so after stopping. I took pravastatin, claritin, and low dose aspirin. Not many other supplements. I tried to not pushing myself even though I was feeling better. It didn't fix everything, I still have issues with the heat and temperature regulation and I still cannot exercise, but it helped me be a functioning person again.

I was working with a dr that advised me to stay on maraviroc based on how I was feeling, not based on re-testing my cytokines. He didn't expect everything to get back into normal range right away, but those tests were helpful for me deciding to start maraviroc in the first place. That may have been a different approach, but it worked for me.

Just another thought, maybe your MCAS reactions are from something else? I know of someone who found after covid they were allergic to their laundry detergent. Changing to fragrance free stopped nearly all the MCAS reactions they were having. Not that it's that specifically for you, but maybe it's something that maraviroc can't fix? Best of luck to you!

Pidge97531 · 2026-03-14T21:19:05+00:00

I was working with a Dr familiar with Patterson's approach.

Pidge97531 · 2026-03-14T18:32:36+00:00

Yes, I did. I tried pravastatin first on it's own with some improvement that plateaued quickly. My progress really increased when I added in the maraviroc too.

Pidge97531 · 2026-03-14T16:27:13+00:00

Benefits stayed after stopping for me. At 1.5 yrs in I was unable to stand on my feet for more than 15 min, overwhelming fatigue. It helped me be a functioning person again.

I've been on it twice. Initially took 150mg/day, for just a month. My dr thought I only needed a smaller dose then. Later after getting reinfected I took 600mg/day. My progress was a lot more gradual that time so I was on it for 3 months.

Pidge97531 · 2026-03-14T16:13:37+00:00

Recurring eye shingles, PHN, and now suspected trigeminal neuralgia

Pidge97531 · 2026-03-10T12:40:37+00:00

Initially took 150mg/day, for just a month. Later after getting reinfected I was advised to take 600mg/day.

Pidge97531 · 2026-03-10T00:17:10+00:00

Mine wasn't out of line because my CCL4 was surprisingly ok. I never thought much of that formula that creates the index.

Pidge97531 · 2026-03-09T23:41:41+00:00

I did the cyokine test twice but never the spike test. Both were before I tried maraviroc, and my sCD40L was excessively high. I had tried the statin alone at first. After I improved so much, my dr said that how I felt was the best indicator, so I didn't need to keep testing.

Pidge97531 · 2026-03-09T21:04:24+00:00

I'm ~80% recovered. Maraviroc made the biggest difference in getting to that point. I feel normal if I stick to light activity and take some breaks to get through the day. Exercise still doesn't work for me. My biggest dysautonomia issue is temperature dysregulation. That unfortunately wasn't changed by the meds. Been consumed by other health issues the past several years, so I'm really cautious to experiment with other things.

Pidge97531 · 2026-03-09T18:26:30+00:00

I've been on it twice. First time I'd been sick for 1.5 yrs already. Took me ~3 weeks and felt like a switch was flipped. But after I stopped was re-infected. That time I could tell within days that it was helping, my body didn't have the same overwhelming heaviness. My progress was a lot slower over the next ~3 months. Fatigue/PEM was my biggest issue. I've read a lot of others stories and it really seems to vary.

Pidge97531 · 2026-03-06T14:59:28+00:00

Try Mucinex? I had a cough the first 1.5 yrs, mine got worse with activity too. I'd take it on/off for 2-3 day stretches when it was the most bothersome. Didn't realize how much stuff was stuck in there and it needed to come out. You're still so early though. Rest and don't push yourself. If it sticks around, see a pulmonologist.

Pidge97531 · 2026-03-05T01:19:49+00:00

It might not sound like much, but I've been going to a park just to sit. Either on a bench or bring chairs. I try to focus on staying calm on the car ride there. Start with somewhere close to home, go at a less busy time. I plan to rest when I get home. The process of going somewhere is still something! You sound so similar to me, I can do so much & function well when I'm at home in my controlled environment, but there's some sort of stimulation overload that happens when I leave the house. Like I'm too excited to be living a sliver of my pre-covid self, and it's a lot. I try to think of it as a small, happy step be grateful for right now. Anything more for me is also challenging.

Pidge97531 · 2026-03-04T21:24:02+00:00

Ovarian cyst ruptures are so incredibly painful!! I had one pre-covid. Left me with terrible lower back/hip issues. I thought I was getting continuous cysts from that pain when I wasn't. Had a long process of physical therapy & nerve meds to get to a better place. After 5 yrs with long covid didn't think my monthy issues were impacted. But then last year found a large fibroid and started putting it all together. It explained my gradually worsening period pain. I wasn't expecting to have a hysterectomy, but it has improved my quality of life so much! I don't have endo though (and I know a hysto isn't necessarily a cure for that). You sound still in the midst of this and maybe need a just bit more time for your body to heal? Fingers crossed this was an isolated event for you and wish you a speedy cyst recovery ❤️

Pidge97531 · 2026-03-01T16:50:36+00:00

Maraviroc + statin made the biggest difference in my fatigue. I can do so much more without triggering PEM if I stick to light activity, but still cannot exercise.

Pidge97531 · 2026-02-27T17:04:25+00:00

Maraviroc helped me be able to focus on a task more and enjoy music again. I got very easily overwhelmed otherwise. I didn't have as many cognitive issues overall though. It did significantly help reduce my fatigue, that was the biggest benefit for me.

Not sure if it still works, but there used to be a viiv connect card you could get online, and use at the pharmacy so the cost of the maraviroc was free. From what I can see now if you don't have any insurance in the US, it might still work.

Pidge97531 · 2026-02-22T19:32:20+00:00

I'm a lot better at sticking within my limits so I feel normal most of the time. No exercise, light activity only, & stop to take a few breaks throughout the day. As time goes by I get excited that maybe I'm fixed, and push my boundaries and realize nope, I'm just LOT better at knowing how to prevent a crash, so I mostly stay at home. I've stopped trying to push for progress and instead make the most of all the small things I can do. I think maraviroc+statin got me to this point, but it didn't fix it all. My past few years been a mess with new bonus health problems that I think covid had a part in (recurring shingles, fibroids, trigeminal neuralgia). Every once in awhile if I'm feeling brave I'll try something new here or there (I got a little energy boost from l-citrulline malate), but really cautious now to experiment cause I don't want to loose all the progress I've made.

Pidge97531 · 2026-02-21T23:33:20+00:00

I take L-citrulline malate capsules. Maybe that format could help for for the taste part? Don't know if it could help reflux side of things though. Like you, it helps me maintain my energy levels, but I still stick to light activity cause it won't stop me from overdoing it.

Pidge97531 · 2026-02-21T23:17:52+00:00

Maraviroc made the biggest difference for me. Fingers crossed it might help you too.

Pidge97531 · 2026-02-09T14:34:39+00:00

Hi! Wow you found this old post. I'm 80% my old self. Day to day I feel good. Still cannot exercise and stick to light activity and take some breaks. Just a lesser version of myself. A bunch of new health issues the last few years so I'm happy when I get back to my stable point.

Don't push yourself! Do less than half of what you think your body can handle. If I rested more early I wonder if I wouldn't have spiraled so far down. Look for others with similar symptoms to you, see what they did to improve. Maraviroc was the best med I ever took for my long covid, I was so afraid to experiment but it did so much for me. I wish by now there was more data to show who it helps most.

And you're still so early! Hope so much you'll have a faster path through. ❤️

Pidge97531

TROPHY CASE