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Are Antivirals and/or Antibiotic cocktails the Cure for LC?
Post-COVID Recovery & COVID-19 | Last Active: Jul 10 1:11pm | Replies (35)Comment receiving replies
I’m finding the same underlying issues. I’ve had LC since my first infection in December 2020. I have been on an off label HIV drug (maraviroc) since last July, working with a research lab that does very sensitive testing not done at most medical labs, and a researcher.
https://theradiancediagnostics.com/portfolio/covid-19-long-hauler-test/
They tested for 14 different cytokines and for spike proteins. 72% of my tests were abnormal. I just got tested again in March. The HIV drug has pretty much cleared out the spike proteins (yay!), however my inflammation is still very high. The doctor/researcher recommended that I be tested for several other possible sources of my inflammation. I tested positive for Epstein Barr - in fact, I tested as having an acute infection. I’ve been pretty ill. I got the flu at the same time and all of that brought back my asthma. I also have had mast cell activation. When I am at my weakest I am allergic to everything - miserable.
Now, 2000 mg of daily valacyclovir is part of my regimen, as well as a low dose of daily steroids (5mg). I’m on so many medications! Although my two doctors (the research doctor and my GP) are working together, I feel like they are not quite communicating about all my meds. I’m wondering if I should go off the HIV med and go forward with the valacyclovir and start celebrex. Those two meds taken together have shown real promise in small studies.
https://www.biospace.com/article/releases/virios-therapeutics-announces-positive-data-demonstrating-improvement-in-multiple-long-covid-symptoms-following-treatment-with-a-combination-of-valacyclovir-and-celecoxib-in-an-exploratory-open-label-proof-of-concept-study/
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Hi Anned22,
Dang!! That’s a lot of meds! How are liver and kidney panels doing?
I’m excited to hear about the testing for cytokines and spike protein! And that the HIV drug has cleared you of the spike proteins- that’s awesome!
I’d love to know what level of spike proteins I have. Which of the tests does this exactly? Do you know? I want to tell my doc about it.
I’m so sorry to hear you’re so sick! Acute EBV with flu and MCAS, OUCH! I totally know how you feel with not being able to tolerate any food with your MCAS - I couldn’t eat anything for months a couple of years ago. I’d take a 1/4-1/2 Benadryl before eating which helped and then finally things calmed down after 6 -9 months. Super scary tho!
I also had a steroid induced Cushing’s reaction 1/23 so can no longer take steroids. I seem to manage my MCAS with daily Zyrtec, Azelastine, Pepcid
BUT, when I’m acutely sick, everything is thrown off no matter what I take. Which is what it sounds like for you!
Curious as to why you’re still on the off label HIV med if your spike proteins are gone?
I got off all meds for 3 weeks to let my liver heal and I actually felt better as some of my symptoms were side effects. I wanted a baseline to see how I was actually doing. I still had heart racing, palpitations and poor activity tolerance but my head was clearer. And some of my unexplained bloating also decreased some (I’m thinking liver improved).
I wonder if you did the Valacyclovir and prednisone and got off the HIV med, if that might help you? I know the Paxlovid I took has Ritonavir which is an HIV drug and is very hard on the body. As much as it helped, it also caused other problems and I’m finally healing from those which has helped me feel better.
I hope the Valacyclovir helps clear your acute EBV soon for you! I’d be cautious taking Celebrex for long durations as it’s bad on the heart. But short durations it might really help with your inflammation. Although inflammation from infections is a hard one right? Cause the inflammation is downstream symptom of the infection. So treating the infection would decrease the inflammation.
Definitely sounds like you need to be on antivirals tho and prednisone for your MCAS and its anti inflammatory effects. But maybe ask your doc if you can do Benadryl for when you eat? I know Benadryl has been my life line more so than prednisone, but that’s just me. Or maybe a combo is best?…
I also know a doc who takes Ketotifen for her MCAS says it’s better than prednisone and Zyrtec, etc.
I’d love to know about the spike protein tests. And how you’re doing with the Valacyclovir!
Wishing you healing!