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

Posted by repl @repl, Mar 28 5:43pm

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?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

repl | @repl | Mar 29 5:06pm

In reply to @sarahb2 "I was recently on paxlovid for getting COVID (the third time) and felt better than I..." + (show)

Hi Sarah,
Great info, thanks!

Yeah, definitely lab interpretation is very skewed by docs who aren’t chronic disease specialists. Most just see high IgG and say that’s an old infection. My ID doc explained it really well saying IgM is high with acute infections and then IgG starts to kick in. IgG over like 500 is considered reactivated and IgM 200+ is considered reactivated.

I’ll check out tenofovir and keep in my back pocket to ask about if valacyclovir doesn’t work.

Interesting about valtrex/famvir + celebrex. I personally can’t take nsaids due to allergy. But I’ll check him out!

I got Pax via a doctor who I know personally. He wasn’t comfortable doing it but agreed to assist me until I could get into my LC ID doc.

I will say I got a little nervous taking it so long because I was having GI distress like diverticulitis and my gut is still trying to recover after stopping 5 weeks ago. It’s getting better being off of Pax. Also my ID doc was concerned about lack of safety data for long durations. She also thinks it was mainly the Ritonavir that helped me the most and I agree. So maybe something to the tenofovir.

It’s good to have more info to discuss with my doc.

I’m being seen at Centers for Complex Diseases. They only see people who live in California or Washington. You have to send a bio for them to vet if they can see you then it’s like 6 months before getting in…

Thanks for sharing all your deep dive info!

repl | @repl | Mar 29 5:11pm

In reply to @uget1shot "How are you titering up on the Valcyclovir, to get to your 3g/day? And how do..." + (show)

Hi Uget,
I’m super sensitive to meds and highly reactive with hives, gut stuff. So my ID doc is having me titrate up by starting with halving 500mg tablets 3/day for 1-2 weeks. Then if no side effects, do 1 full 500mg tablet 3x/day for 1-2 weeks. Then the full dose of 2 500mg tablets 3x/day.

sarahb2 | @sarahb2 | Mar 29 7:01pm

In reply to @repl "Hi Sarah, Great info, thanks! Yeah, definitely lab interpretation is very skewed by docs who aren’t..." + (show)

Wow, that's so cool that you are with the Centers for Complex Diseases. I've listened to some of Dr. Kaufamn's podcast. Sounds like you are in the best hands!

How long were you on paxlovid? I ended up getting a prescription today!

repl | @repl | Mar 29 8:52pm

In reply to @sarahb2 "Wow, that's so cool that you are with the Centers for Complex Diseases. I've listened to..." + (show)

Hi!
I’m super grateful to have found them! Worth every penny!

I was on Pax for 6 mos while I waited to get in to Centers for Complex Diseases. I found that taking all 6 pills was too much for my GI. And found therapeutic dose of just 1 Nirmatrelvir and then the Ritonavir 2x/day really helped me.

Let me know how it goes for you!

dloos | @dloos | Mar 30 6:21am

In reply to @repl "Thank you for this info 👍 Just curious, did they test homocysteine prior to infusions? Weird..." + (show)

Yes, I did take Paxlovid for five days. I managed to get it from online doctor. Five days was all I could get, and that amount made no difference for me.

I’m not sure about a homocysteine test. I’ve been tested for so many things!

I had Acyclovir left over from a shingles outbreak. It worked wonderfully for that. I’d recovered, but then had some pain that I was afraid was another breakthrough (it wasn’t). An emergency doc gave me a second prescription just in case. Anyway...long story, but I had a whole bottle sitting in my cabinet. I followed a protocol I saw online which I no longer remember because this was some time ago.
I took it for a few weeks and had no change in my symptoms.

As you can tell, I’ve tried many things on my own, and under doctor’s care.....I just keep trying.
Of course the infusions are under doctor’s care, but even though my latest blood tests look somewhat
better, I don’t feel a change.
Some days I feel hopeful. But tonight I’m up with ears ringing unable to sleep. It’s tough.

repl | @repl | Apr 2 1:23pm

In reply to @sarahb2 "Wow, that's so cool that you are with the Centers for Complex Diseases. I've listened to..." + (show)

Hi Sarah,
An update and warning about Paxlovid for long duration. My liver suffered injury from it and I’m still recovering from this. So be mindful of what’s happening with your stools (mine turned orange and yellow) with abdominal bloating around month 4-6.

Should have stopped sooner…

How’s it going for you though? Any improvements after 2-3 days?

Also, have you tried hyperbaric oxygen therapy for LC?
I’m going to try this next to see if helps my liver too and LC!

Best Wishes!

sarahb2 | @sarahb2 | Apr 2 2:14pm

In reply to @repl "Hi Sarah, An update and warning about Paxlovid for long duration. My liver suffered injury from..." + (show)

Thank you for the warning. That is really scary. I just started today. So far just the bitter taste yuck!!! I haven't tried hyperbaric oxygen before. I hope it works for you. Is your doctor doing anything to treat your liver? That's really concerning!!

repl | @repl | Apr 2 2:41pm

In reply to @sarahb2 "Thank you for the warning. That is really scary. I just started today. So far just..." + (show)

I just found out about my liver, it’s most likely transient. I’m waiting to hear back from my doc about it.

Pretty sure if I just take a break from meds it’ll clear up. 🙏🏻

Yeah, the taste of Pax is terrible! But it was worth it to feel better to me. I felt a significant difference like my mind just woke up again and my body had normal strength and energy and my heart racing/palpitations decreased.

I do think it was losing this effectiveness around month 4 tho. Should have stopped then in hindsight. And overall I was feeling better, not normal or great, but better than before I started.

One thing I noticed was if I stopped for like a week or 2 then restarted, it would really help again, then kinda lose its effectiveness.

Anyhoo, can you let me know how you’re feeling after day 3 and if it helped? Hope it does!

sarahb2 | @sarahb2 | Apr 2 3:36pm

In reply to @repl "I just found out about my liver, it’s most likely transient. I’m waiting to hear back..." + (show)

That's so interesting that it would lose its effectiveness. You're a pioneer in long-term paxlovid use. Your doc should write a case study about you!! Yes, let's check in after a few days.

repl | @repl | Apr 21 4:09pm

In reply to @sarahb2 "That's so interesting that it would lose its effectiveness. You're a pioneer in long-term paxlovid use...." + (show)

Hi Sarah!
How’s your trial of Pax going? Notice any changes?

My liver and labs were finally great again after being off of Pax for 2-3 weeks.

Just curious… do you have GI involvement?

I just took a round of Rifaximin and am feeling better! Hopefully it lasts. I’ve had IBS for a long time and then questionable SIBO prior to my Covid - breath tests always came back negative (but given the specificity and sensitivity of the breath test around 50%), not very accurate! But never took anything for it until now! It’s been another game changer for me so far.

But I’m waiting to see how long it’ll last. Seems the longest I’ve gone with feeling almost normal is 2 weeks, then symptoms start to gradually return.

So has me also wondering about bacterial overgrowth as another potential variable causing LC, along with the other viral reactivations. Hmmm 🤔

What have you been finding?

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