Are Antivirals and/or Antibiotic cocktails the Cure for LC?

I just have one question for you. Did you loose your taste and smell with Covid and if so, did it come back with the medication use?

Hi!
Those were symptoms I fortunately did not have. So I don’t have any experience on them.

Do you have other symptoms or just those?

HI I'm another person who have had a few bouts with very bad GI symptoms including IBSD and wicked reflux. Took rifaximin abt 18 mos ago, felt better for 4 days then IBS came back but eventually went away Why? Now have it again really bad and started rifaximin a week ago, having really intense bloating and reflux, my throat and esophagus are hurting so much, but will stick with the rifaximin for week 2 to see if it helps, but the process this time is really hard. Last time it didn't give me all the extreme bloating and reflux the first week. I have been suffering with various symptoms since getting mild case of covid that mainly affected my GI tract in Dec 2021, so its been more than 2 years now. I have felt better for a few months but then it comes back. I even had thyroid removed which does seem to have helped heart palpitation symptoms, but now my GI tract is really bad. Has anyone tried NAD & increasing therapies, I've been reading about that but have not tried any yet, waiting to see if rifaximin works at all this time.

Very interested in your diagnosis and treatment. I've had LC for over 2 years. In blood work, I showed antibodies to EBV and Herpes but it was never followed up. Did you do more advanced testing to show reactivation? or did your LC specialist just go by your symptoms and her knowledge? Where is the doctor you're seeing? I finally made it into the Stanford Chronic fatigue clinic but not accepted to the LC clinic. USF did not accept me either as I didn't have a PCR positive test, I took the home test! I've had this dreadful thing since Feb 2022, even had my thyroid removed, which seems to have helped with cardiac symptoms. But I continue to have consecutive bouts of really bad GI symptoms and acid reflux pretty much all the time, along with chronic fatigue as my sleep is horrible with the GI and reflux all night ( day too ). I'm currently taking Rifaximin for IBSD, worked for 4 days last time I took it, this time I'm halfway through the 2 week dose of it and my symptoms are really bad, but will continue the 14 day course of the antibiotic. I'm thrilled you reached a doctor who understands, even the Stanford chronic fatigue clinic who see lots of LC people are making me see a Rhumatologist who I had to wait 6 mos for appointment, that's coming up in May...to eliminate something they might diagnose as a possible cause of my symptoms. Stanford clinic did give me low dose Naltrexone, but it didn't do anything really to help so I stopped taking it as at the time I was also dealing with thyroid removal and heart issues, which now seem better. But I'm not better overall, still have underlying driving thing thing, I suspect something like what your doctor is saying, since I did test positive for EBV and Herpes. Do you have either of those and if so what is the treatment you're getting for it? Sorry so long, but as you know this is a very long story for a lot of us.

I had a question for you, I'm gbw I may have posted it in the thread rather than directly to you, I'm a bit confused about that, would you check thread to see if there's anything from me as it was rather long to retype, and if not I can resend it directly to you again. Thanks, Geraldine

Hi Geraldine!
Sorry things are so tough! I think we can all relate — definitely sucks losing your life within days!!

There’s a lot here you’ve mentioned…
As far as docs go, I’ve been to MANY! And I’ve been in the UCLA system seeing specialists without success. Personally, I wanted to find someone who wasn’t part of a large teaching institution for a more comprehensive and unified treatment approach - an all-in-one doctor. Not a million docs who then never piece it all together!

After reading an article in Nat Geo on LC specialists commenting on treatment and findings, I tracked down one of the quoted docs to a privately owned clinic in California and Washington called Centers for Complex Diseases. They don’t take insurance but will give you super bills to bill your own insurance. It’s expensive but getting my life back is worth it!

My doc is thorough and understands chronic diseases, which is what LC is. Most docs don’t know what to think or do with chronic illnesses, except symptom management which never addresses the upstream causes so people stay stuck in a vicious cycle of never getting better only med side effects. Or they think it’s mental, argh!

As I’ve mentioned, I want upstream causes answers, and treatment for those not downstream symptom management.

My infectious disease doc explained that the EBV, VZV, and other herpes viruses that most docs interpret as past infections can actually be continued activation if the IgG levels are higher than 500. Example: my EBV is >600 U/ml. It was tested years ago after my acute Covid infection in 2019 (was the same value as today), but the doc who interpreted it was only looking for a positive IgM which shows “acute” infection. Any high IgG levels all docs interpret as old infections.

My ID doc explains that IgM is first line of defense, then IgG kicks in and that both should go down once infection has been cleared. However the IgG antibodies stay slightly elevated for recognition should one be exposed again. But too high of IgG means that there’s a chronic infection the body is still fighting.

So having a doc who understands what levels of IgG are too high is important.

I’m not gonna say I have answers to what the cure is as it’s individual per understanding each person’s underlying infections causing things.

As for my path, Bartonella, Lyme’s were both negative. But my viral loads are high in EBV and VZV. And pretty sure I have SIBO which has been an off and on issue most of my life. I have some other bacterial infections that show high as well but until I see my doc again I’m not sure if these need to be addressed yet…

The fact that both Pax and antibiotics have helped me feel better for a few weeks and months gives an indication that underlying infections are the root cause of my issues.

Now it’s about finding the right meds to treat them! I think it’s going to be a combination and time that will tell what each is…

Rifaximin is helping but not all the way. I didn’t actually take my course of Valacyclovir due to concern about my liver after taking Pax for so long. But it’s all good now! So I’m going to start Valacyclovir in 2 days after my Rif is done.

My doc also explained that sometimes we feel better after antibiotics as it clears everything out of the gut, but then it grows back, that’s why repeated Rif is done. I read a randomized control trial of Rifaximin 7 day course done for 3 consecutive months which showed improvement in symptoms and beneficial flora post treatment.

However, I do think it’s not just bacterial but viral loads that need to be addressed. At least for me and sounds like maybe for you too since your herpes loads were high.

Just curious: were H-pylori, celiacs, SIBO tests done?
And I’m imagining you’ve done lowFODMAP, or other dietary changes?
Have your tried Pepcid (H2 blocker) and Prilosec for heartburn? They’re downstream symptom management but could help with sleep and quality of life.

Also, my doc looks for autoimmune diseases along with everything else too! Super thorough! But like >$20k of labs. Worth it though! And she’s super nice! Takes >6 months to get in. You have to write an email to see if they’ll accept you.

I hope you and we all find answers and help! 🙏🏻

Thanks so much for your indepth reply, I've already spent $30,000 out of pocket for my care for the last few years. For 10 months I even had a nurse helping me as I felt too awful to drive to Dr appointments and do basic things, that alone cost $10,000. Not to mention doctors who don't take insurance, acupuncture, massage, tried Naturopath, even went to therapist when I felt so frustrated in the beginning with lack of any comprehensive care, and unbelievable waits to even get a doctor appt, I felt so helpless and hopeless. The worst thing as you say is the being treated for individual symptoms, although some are so bad you are grateful if any go away, like my thyroid being knocked off line and the meds I'd taken for 35 years with no problem no longer worked, so I got cardiac problems related to that. Thankfully thyroid removal seems to have at least fixed that scary thing.

Yes I have done every test known to man, tested positive for SIBO Hydrogen, and have just ordered the blood test for the food poisoning antibodies too, as that could add some treatment options if the Rifaximin doesn't work. Did colonoscopy and endoscopy 18 mos ago which basically showed nothing wrong, so with my latest bout of wicked IBSD/Sibo and reflux, for now my GI doc just said go right to Rifaximin see if that helps. PPI'S and Histamine blocker didn't really work for my current Reflux, but maybe I didn't take them long enough, as we decided to go to Rifaximin thinking the extreme bloating from SIBO etc might be causing the reflux and mobility dysregulation. My throat and esophagus are really irritated, so he might want me to do the PPI's again but they didn't help much before. Did they help you?

Some ideas that might help you. Dr Pimentel advised, and 2 women developed an Elemental diet you do for 2 weeks, they've done clinical trials and had 80% success rate with SIBO, its called M Biota and supposedly tastes a lot better than the other ones out there, so people stick to it better. People who have had only temporary or no good result from Rifaximin are having some success with it. If my round of Rifaximin doesn't work or hold up for long , I'm going to try that next. Its $700 for the 2 weeks of drinks, but they will give you a 25% discount which is less than the $700 copay I have for Rifaximin. I'm also on my own going to do an Amy Myers gut repair concoction, couldn't hurt, and I just started the low inflammation diet Dr Pimentel developed, its a lot more food inclusive than Low Fodmap, much easier to stick to. He also is big on not eating for 4 hours between meals, which is really hard for me when I'm so bloated, because I can't eat much at once then get really hungry before 4 hours! Also you probably already know, not eating for 4 hours before dinner and elevating the head of your bed 6 to 8", which I did but doesn't help enough for now, I still need to prop myself up on pillows and "sleep" on left side only, and am still having reflux at night uugh!

Thanks to you I'm going to recheck my blood work ( can you believe how much bloodwork and tests we've done with this? ) to see my exact numbers for lgG for the EBV and Herpes, probably the only medical person I am "seeing" who would even be open to the numbers thing your doctor believes, is the Stanford chronic fatigue clinic, because they see a lot of LC people. If my numbers are higher than 500 I'll try to bug them about that with the info you provided. What did your doctor recommend for treatment? In Begining of May I'll be going to Rheumatologist Stanford Clinic is making me go to, but probably a waste of time. The most frustrating thing of all is the doctors are sympathetic, but they just focus on their specialty and don't communicate with one another, and are all to happy to foist you onto another specialist. My sister is at Kaiser and they really aren't any better although they communicate with one another, they still send LC people to individual specialists for symptom treatment, no real overall approach at least not yet. Why can't they catch on that something underlying is driving all these symptoms we suddenly got after covid? Before Covid I was healthy active person.

I'll look into the place you're going now, although spending even more big chunk of money is not appealing. Although IF I were SURE it would fix me, I'd be willing to pay a lot! Hope my info about Rifaximin experience and the new Elemental diet endorsed by Dr Pimentel is at least helpful for you, but hope for you and for me one round of Rifaximin will do it. Geraldine gbw on this site

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/

Hi!
Yeah, CRAZY amount of testing! My veins are scared from all the blood draws!

Sounds like you’ve done all the testing and diet stuff!

I’m going to start Valacyclovir for EBV, VZV. She mentioned she has 3 other antivirals to try if it doesn’t do the job. Supposed to get up to 3g/day!

Hope my liver handles it okay!

Hope Rif helps you!
Keep me posted if you find anything helpful!

Best!
Rachael

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!