Are Antivirals and/or Antibiotic cocktails the Cure for LC?
I’m interested to know what people have tried after being tested for LC due to reactivation of underlying conditions such as EBV, VZV, CMV, Lyme’s, Bartonella, etc.
Has anyone found a treatment regiment that works?
(Also, if you haven’t been tested for these underlying conditions — DO!)
I just saw my LC specialist who is a chronic illness-infectious disease specialist (ID). She has been really insightful and helpful! It took 6 months to get in, but well worth the wait!
I had been researching for 6 months all of the new research on LC and treatments and was trying off label treatments on my own like Paxlovid for 6 mo. And all of her knowledge and answers are up to date with research as well as treatments. Super blessed to have found her and I wanted to share what has been found. As well as ask if anyone else has been tested for underlying conditions and had treatment?
I’ve been to see docs about possible underlying conditions but they either didn’t believe in them (Chronic Lyme’s) or didn’t know the most sensitive and specific testing to rule these out, or don’t understand how to interpret the findings. But she does because she’s a specialist in chronic conditions!
I was tested by another doc for EBV but it wasn’t interpreted correctly. Turns out I DO have reactivation of EBV as well as VZV. She says they are the reasons for my LC symptoms and we are trialing several meds (antivirals and chromolyn sodium) to see if they help.
LC is being found to reactivate normally dormant viral or bacterial infections (think childhood illnesses like chickenpox, mono, flea bites, tick bites, etc.). Research is not showing whole viral particles of COVID in the body for LC sufferers but they ARE finding reactivation of normally dormant illnesses. It’s these infections they think are causing LC.
In my case I have two main viruses reactivated - chickenpox and mono. I’m starting with Valacyclovir small doses and titrating up to the therapeutic treatment dose of 3g/day. I’m also trying chromolyn sodium to assist with my allergic reactions and inflammation. It’s been suspected that I have mast cell activation as I have severe allergic reactions to things. But I’m thinking that my body is over reacting because it’s working so hard at clearing 2 infections!
I’m hopeful that antivirals and possibly other antimicrobials will work! 🙏🏻
I’m wondering if anyone else has been tested for underlying infections such as these and what treatments have worked?
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Well, to answer your question if I have any other symptoms or just loss of taste and smell. It’s been an “odd” time for me, as it all began after I had 18” of my Sigmoid Colon removed due to severe diverticulitis. That has healed well, but since then, my food allergies have gone off the rails! I had a food sensitivity test done and I’m now off of several foods I had reactions to. The main ones are gluten, dairy and soy due to being diagnosed with Hashimoto’s and Hypothyroidism in November of 2022. I then caught Covid in December of 2022 and lost my taste and smell. I wasn’t put on any antiviral medication for Covid, only Steroids as the doctor on call that day said the reaction from the medication was worse than the actual Covid I had. Now, I’m wondering if I had been put on Paxlovid, would I still have my taste and smell? I guess I will never know! Good luck to you!
Update on progress: Antibiotics for gut might be a cure!?!…
Valacyclovir didn’t have much effect. Unfortunately.
I was found to have MCAS and hEDS. Which both can be attributed to SIBO and gut issues - which I have lots of!!
I had IBS since I was young swimming and drinking from mountain streams (giardia), trips to Mexico with severe abdominal sickness.
Before Covid, I also was suspected of SIBO but breath tests came back negative.
These past 18 months, my gut issues have been more severe than ever. I have constipation, severe bloating and unexplained weight gain of 40lbs in 4 months. I have done every diet imaginable and am the healthiest sick person I know. I literally can not eat less on my lowFODMAP , low histamine diet!! Diet can only do so much and isn’t a cure or treatment…nor are probiotics.
I have had continued bouts of what Urgent Care and ER said was diverticulitis. But kept coming back every month or so. Finally saw GI who said because I didn’t ever have fevers, he thinks it’s more spastic diverticulosis. Not diverticulitis. Which can be triggered by infections in gut.
Think of our gut as a main player in our immune system and studies and researches are linking SIBO as being a cause of IBS, not the other way around. Then add another infection like Covid to an already compromised gut system and WHAM! All kinds of crazy happens!
I’ve done a lot of research and am finding significant links to gut and LC which might be a possible cure for those suffering from LC gut issues like me.
Because of all my “diverticulitis” episodes (4) in 5 months, I’ve taken antibiotics each time and they helped!!!
The antibiotics helped clear not only my gut but my brain fog, PVC’s, energy, and allergies! But then it only lasted a couple of weeks before everything returned.
I was told how this was really common for people to feel a lot better on antibiotics then worse again after the gut bacteria grows back. The bad gut bacteria grows back a week or so later. But feeling better from antibiotics is an indication that antibiotics are doing something towards my LC!!!
I’ve been trialing Cipro/Flagyl combo 3x, each time helped with pain and severe bloating, symptoms came back within 2 weeks of bloating, brain fog, allergies, weakness, PVC’s, etc.
Trial of Rifaximin with Flagyl was a HUGE game changer for me! I finally got my doctor to prescribe Rifaximin for me (bought online from overseas at fraction of cost here in US). I wished I would have had this medicine years ago!!! My symptoms took a while to improve, about 7 days before started to notice improvement with bloating and bowel movements. But after 7 days, I started having full eliminations that I hadn’t experienced in decades!
After 10 days I even started losing weight as my bloating started to shrink. I could fit my wedding ring on my finger for the first time in 18 months when all hell broke loose that started these crazy symptoms of PVC’s, weakness, brain fog, bloating, etc.
Then my 14 days were up. I felt better for 2 weeks then starting noticing the creep of bloating start again. My bms were still good for 4 weeks though. Until after 6 weeks I was back to severe abdominal pain, severe bloating and feeling terrible, pvcs, pain.
I started just Rifaximin, doc said could be on it for 4 straight weeks if felt better on it. I wanted to try cycling antibiotic treatment as I’ve read studies doing this with good results for SUDD and IBS. Felt better within 2 days of taking it again. However my bloating didn’t go down as much, but it helped my energy, brain fog, bm, pvcs, and allergies.
Took a week off after 3 weeks, in 7 days felt way worse so started Rifaximin with Flagyl since that seemed to help the most last time.
Results weren’t as good and within 7 days I felt much worse. (Thinking it’s the Flagyl cause my body doesn’t react well to it even low doses give me side effects). Changed flagyl for doxycycline and started to feel better again. Was on this for 9 days.
Now doc wants me to do another SIBO test to test for methane SIBO. She won’t prescribe neomycin with Rifaximin unless gets positive test for methane SIBO.
I hope it comes back positive and I can get on a program of kill off bacteria, support gut with probiotics after and supplements with digestive enzymes….
Or maybe continuing cycling Rifaximin will be a cure? Cyclical Rifaximin has shown to improve good gut flora while eliminating bad. So there’s hope!
But will see…
I had 18” of my Sigmoid Colon removed due to severe diverticulitis back in April of 2022. For years I suffered with on and off issues of diverticulitis and was put on antibiotics along with Flagyl (which is an awful medication that made me nauseous). I had my usual colonoscopy’s and then more frequent ones because my gastroenterologist was removing polyps almost every time, though benign. Finally, my gastroenterologist recommended that I have a resection due to narrowing of my colon and pooping was becoming a problem. I now can eat seeds without a problem and have been more regular with bowel movements. I would begin a regimen of really good pro and prebiotics. They will help with bowel movements and digestion. They will also help your gut with gut flora. Antibiotics kill that off, so be cautious how many of those you’re taking and your doctor should be aware of that. They really are just a band aide for what’s really going on in your gut. Since I had my colon resection, I got Covid in December of that same year, 2022. I lost my taste and smell and still don’t have it back. It’s been awful. Going on 1 year and 8 months soon without tasting or smelling much of anything. The only constant smell I have is my coffee grounds in the morning…I can’t taste anything but salty, sweet or sour. I’ve had 4 Stellate Ganglion Block injections with only a slight improvement. I am running out of things to try to regain it. If anyone reading this has a helpful suggestion, I would be happy to hear it. Good luck on your health journey.
Hi,
Thank you for sharing your experience.
Curious, what symptoms were you experiencing with diverticulitis? And how often did it come back? Did you also have IBS or SIBO for years prior to your diverticulitis? Also, what age did it occur?
My symptoms are also IBS type symptoms which I’ve had for years with suspected SIBO. Also my CT scans are negative for diverticulitis. My doc says 53 is young to have diverticulitis. And diarrhea started my onset from my taking long term Paxlovid for LC so more likely not diverticulitis.
I also find it significant that Rifaximin helped me tremendously with everything even beyond gut symptoms such as brain fog, energy levels, decreased PVC’s, improved allergies and no more hypoglycemic feelings that weren’t hypoglycemia. This to me points to gut infections causing my LC issues as well as my long term IBS being a precursor. I could be wrong, only time will tell. But…
Rifaximin has been shown to improve gut flora when taken cyclically. Also, doxycycline has been shown to improve symptoms without full systemic treatment. Here’s an interesting article https://patientresearchcovid19.com/hypothesis-matrix-metalloproteinase-inhibition-with-low-dose-doxycycline-in-long-covid-and-me-cfs-pghj-issue1-may2023/
Here’s a good article on Rifaximin helping down regulate bacterial infections:
https://www.mayoclinicproceedings.org/article/S0025-6196(15)00350-X/fulltext
Rifaximin for IBS, a meta analysis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10558962/
When you had diverticulitis, what were your precursors and symptoms? Did you try Rifaximin? If so, did it help?
Also how long between episodes of diverticulitis did you have?
My diverticulitis began over time and initially was just constipation and pain in a distended stomach. I wouldn’t be able to make a bowel movement or release gas at all. The only remedy was taking antibiotics with Flagyl and over time the antibiotics made my gut worse. I don’t really know if there was a difference between IBS and what I had, but no I never was diagnosed with IBS or SIBO, but I use to get UTI’s and Yeast infections a lot when I was younger and those were symptoms of a gut issue. I am now 68 and had the colon surgery at 66. I would have bouts of diverticulitis if I ate certain foods, things with seeds in them and then after a while, no matter what I ate, I had issues. Severe stomach distention and pain around the left side of my belly button. The episodes of diverticulitis came more often from my late 50’s to when I had the surgery at 66 years old. Since my surgery I do not have those attacks any longer, but in December of 2022, 8 months after my colon surgery, I caught Covid and lost my taste and smell. To this day, I still don’t have it back. I’ve done all the “things” I’m suppose to do and still no taste/smell. I even quit smoking the day after my surgery.
Good luck to you and I would stay on the pro and prebiotics and try to eat as clean as you can, meaning no junk food, fresh fruits and vegetables and fish and lean meats.
To answer your question about Rifaximin, I don’t know what that even is and no I did not take it.
Just wanted to report that this regimen seems to be helping me:
valacyclovir 750 mg + celecoxib 200 mg twice daily
I am only taking it once a day because I am so sensitive to meds.
Here is a link to the study information:
https://sleepreviewmag.com/sleep-treatments/pharmaceuticals/emerging-compounds/investigational-antiviral-therapy-reduces-long-covid-related-fatigue-sleep-disturbance/
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1 Reaction@repl I know it has been about a year and a half since your last post on this thread…
Any updates?
Hello!
Yes! Lots of updates actually…
After trialing MANY various treatments from hyperbaric oxygen therapy (caused temporary severe hearing problems), to various other antibiotic combinations, antivirals, and mixing/matching supplements…
I’ve found these to be MOST helpful and wish I would’ve stumbled across them sooner!
The number one thing I’ve learned is that mitochondrial dysfunction IS the main driver of most of my issues. So I bumped up CoQ10 to 500mg/day. And added other mitochondrial supports like Resveratrol and Berberine. These are my daily regular staples.
Then bc my biome was just not doing well… I finally did off label FMT. It really helped but not in the expected ways.
I tried the FMT for c diff treatment which is 10 days of capsules plus enemas. And found the enemas most helpful as my colon was super inflamed and irritated. The enemas really calmed me- a lot!
Of course this didn’t cure everything. It helped for like 4 weeks then I was back on antibiotics.
So I started researching how FMT is being trialed more cyclically for ulcerative colitis. So instead of thinking of it as one and done where you hit it heavy for 10 days straight. I decided to try cleansing with magnesium oxide prep, then doing 3-5 days of both capsules and then like 2-3 enemas instead of 9. Then I wait like a week or 10 days and add back my Rifaximin again. It’s been really moving the needle for me!
Also my GI suggested I just stay on Rifaximin daily and I have which helps to not have the big swings into dysbiosis I had to keep crawling back out of. It’s been stabilizing.
I’ve been noticing improvements with both eliminating and feeling better and tolerating more foods and some probiotics too! Huge win honestly bc I couldn’t tolerate anything!
The probiotics I’ve found gentle enough yet also helpful are infantis mainly. Then if I’m feeling great, I’ll add in longum.
But I do micro doses and wait a few days to see. I also do activated charcoal at night just one capsule to help sop up the excess toxins released from the bacteria, histamine, etc.
It definitely trial and error. And lots of listening to my body!
And I slide backwards and start again too.
But boosting and helping my mitochondria has really helped stabilize my crashes and then adding FMT for my gut is helping heal/stabilize my gut!
(I found I don’t need as much of the FMT as is recommended, so I save some money by drawing it out a little longer).
And just FYI, none of the FMT is recommended by doctors. It’s my own experiment. But it works!
Found your discussion interesting as I have been suffering from these LC symptoms since early 2022, so have been down the long road of multiple Dr's and medications. All tests like scans, Xray, CBC of course all come back normal so most Dr's ghost you but was able to find a couple who actually tested for infectious disease possibilities and found the same results of chronic re-activated EBV, VZV, SIBO plus Babesia (tick spread). This allowed me to get more appropriate medications such as the Rifaximin, Azithromycin for the SIBO and Arakoda, Doxycycline for the Babesia. After three years of being extremely ill from a Covid infection I finally felt like my life was coming back although not completely. Still suffer from extreme shortness of breath, constant migraine type headache, nausea from the pain and screaming tinnitus. However, very grateful to get this far as I can at least eat, get out to exercise and short social gatherings.
Please continue to post any succuss, Thank you.
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