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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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What is FMT
@kyrazpollet fecal microbia transplant
@repl thankyou! I’m not up on the medical alphabet soup jargon yet!
After all your testing has anything been suggested for extreme fatigue or shortness of breath? And brain fog!
Initially tests done were to rule out more nefarious disease such as cancer, lung COPD or bronchiectasis, brain tumors or aneurysms, etc. Most Long Covid symptoms are not caused by the obvious or easy to see conditions. Dr's had no suggestions other then "your tests are normal and there is nothing we can do for you". My last resort was to go to a pain Dr. for opiods, due to a debilitating constant headache, which helped greatly in decreasing fatigue and brain fog and I could think again. At this point I started researching on my own with AI. I found out by losing so much weight from not being able to even eat I was taking way too much thyroid meds; Dr's didn't even catch this one. Lowering my usual dose helped the shortness of breath a lot but still have issues when I try to exercise. Knowing my case was viral related I insisted on seeing an Infectious Disease Dr. and they found LC conditions along with re activated EBV and VZV. They gave me Famciclovir which I started only a couple weeks ago, said I need to take it for four months, so not sure if this is the answer yet?. Advocate for yourself and keep searching.
I think there’s no real cure.
@suefish
For those of you who have the SIBO symptoms along with LC here's my Dr's Protocol: (No prescription necessary). CandiBactrin AR and BR by Metagenics. Alternate 2 weeks of AR with 2 weeks BR and continue this for 1-3 months. CandiBactrin AR take one softgel 2x per day with glass of water. CandiBactrin BR take 2 tablets 2 x per day with glass of water. Per Dr. this regime had similar efficacy to Rifaximin.
If you can get Rifaximin the protocol is to get the gut in order first for this to be effective and not allow SIBO to return.
GI PRIME is a dietary supplement formulated to support gut health and promote overall digestive well-being. This advanced blend combines the following ingredients known for their beneficial effects on gut microbiota and immune function.
RenewGut+TM: combines multiple mechanisms of action to support gut health, strengthen the gut lining, nurture the mucin layer, and promote optimal digestive function.
Curcumin: is from Tumeric and a potent anti inflammatory, gut healing supplement.
BioDisrupt: disrupts the biofilm matrix and encourages healthy intestinal microbial communities. Biofilm consists of microorganisms encased within a self-produced matrix of polysaccharides and proteins that strongly adheres to the bacteria or fungi. Microorganisms residing within biofilms are highly resistant to antimicrobials including antibiotics and natural antibacterial therapy produced by probiotics.
BPC 157: is a peptide made in gastric secretions and acts to reduce inflammation and promote healing.
For SIBO treatment, begin with the Biodisrupt. Take two pills twice a day on an empty stomach (1-2 hours before or after a meal) for one month. Two weeks into your Biodisrupt treatment, start the xifaxan (rifaximin) three times a day. Xifaxan is taken for TWO weeks. With the Xifaxan start the other supplements described above. Ideally they should be taken for at least three months.
SIBO diet is low sugar, low carb and low processed foods.
@repl Did your GI diagnose you with C diff and/or ulcerative colitis? Is that why your they have prescribed rifaxamin? Why does he/she recommend taking it ongoing - is that a colitis regimen?
@uget1shot I have SIBO and severe gut dysbiosis. Negative active c diff but high levels of c diff a and b on my GI MAP. Although the GI MAP does NOT diagnose an acute infection, it does give pointers to what’s happening in your colon and my GI MAP I had done prior to COVID years ago, showed no c diff a toxin and b was a lot lower.
FMT is officially approved for c diff infections that are not responding to multiple rounds of vancomycin and the like.
Rifaximin is prescribed for SIBO. However, if you read Dr Pimentel’s research, Rifaximin has also been used for IBS, and then there are studies on it being tried with ulcerative colitis.
I have not been diagnosed with UC either.
However, Rifaximin has clinically shown to be helping me so my GI has been prescribing. Also Rifaximin has been used daily long term for hepatic encephalopathy (which has shown good long term results and safety).
Rifaximin mainly targets gram negative, leaving majority of biome alone. It also helps with detoxification of over growth and with inflammation. Hence, knocks down the overburden of toxins that build up in my system that is already taxed from LC.
It basically keeps things at bay to allow my body to heal. And it is!
My next trial is going to be Pridgin’s protocol of Valacyclovir and Paxlovid.
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2 Reactions@repl So interesting! I was prescribed Rifaximin in 2022 for methane-dominant SIBO and it helped. I had tried the herbal route (using the gold standard proved out by a Johns Hopkins study to be equal but with less risk of rebound than with Rifaximin), but it didn't work for me. With this new perspective on Rifaximin, I now wonder if the so-called rebound effect with Rifaximin isn't because the drug fails but because it's only able to treat one condition with a 2-week course, and the remaining issue is one of IBS vs SIBO? My SIBO did clear up wonderfully with the Rifaximin. But what my doctors now believe to be IBS-C is worsening. I'll research the names you've provided, to selectively share with my new GI doc. Many thanks!!