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Are Antivirals and/or Antibiotic cocktails the Cure for LC?
Post-COVID Recovery & COVID-19 | Last Active: Apr 24 10:16am | Replies (31)Comment receiving replies
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.
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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! 🙏🏻