Tick bite again..... Dapsone, IM Bicillin, we r IV Rocephin?

Hello. Sadly, I’m back posting here after a long hiatus of a number of years being healthy and totally normal after a two year battle with Lyme and co-infections. Unfortunately, I was bit again and am sick again. I developed fevers, muscle pain, neck pain end of August. My doctor told me to search my body for a Lyme rash. And sure enough.... it was right there in the middle of my back. I immediately started on doxy and azithromycin.

Fevers are mostly gone, headaches and neck pain gone. But I having a lot of pain. Muscle pain in my back and my muscles feel taxed. I just don’t feel right and I can’t fathom spending another two years pulling myself out of this.

What do you guys think will be the most efficient way to address this? I was bit sometime between August 3-August 10. Symptoms started August 28 and I started antibiotics August 30. Again, feeling a lot better but not even close to normal.

I’m have treatment options:
1. IV Rocephin for one month (my dr told me I’ll feel awful entire time plus possibly another few months after)
2. iM Bicillin for a while. Easier to tolerate than orals and supposedly much better penetration than orals without the need for a PICC line.
3. Dapsone or Disulfuram plus rifampin and doxy. Dr H is really pushing this with me as he feels these are the only treatments that MIGHT cause a long term remission. But no guarantee. And these drugs sound crazy on the body. So I’m very hesitant.

Questions:
1. Has anyone ever had long term success with IM Bicillin? Or any of these treatments?
2. Do you think starting meds 3-4 weeks after tick bite (And 3-4 days after fevers/symptoms started) has any better chance of achieving remission as opposed to starting meds months later? Or did I miss the window to treat?
3. Anyone seem like they are a tick magnet? These things seem to find me!!!! Like I release some sort of weird pheromone or something.

Yes, THE Dr H. He told me his treatment approach has completely changed with the use of persister drugs like dapsone, disulfuram, pyrzidimide. He’s seem more long term success with these versus anything else. But they don’t work for everyone. I think a recent study of his showed 57% remission with double dose dapsone. There is NO way my body could handle that protocol.

So like I mentioned, I’m doing way better than a month ago with doxy and azithromycin. But having a lot of pain that comes and goes. When I was sick a couple years ago, I was impacted much more neurologically which was way scarier stuff. But it’s not like this is exactly pleasant. 🤣

Do you think Dapsone helped you?

Wow... that’s a lot. And your liver and gut have no issues tolerating? I’ve had issues with both since first bite in 2016 so not sure how I’m manage all of it.

I’m going to push for IM Bicillin. Stay tuned....

Makes sense. Which protocol do you think has been more helpful?

What worked for you the first time you were infected?

The first time I was sick (I was acutely very very sick) I was on oral antibiotics for well over a year. I also got a terrible c diff infection in the process. Ultimately, I wound up going to a hospital in Germany for whole body hyperthermia treatment with my daughter (she was 11 at the time) and it literally saved our lives and got us totally back to normal. So I saw my dr today and I’m starting IMBicillin tomorrow and I’ll stay on the doxy and azithromycin. If it doesn’t help, I’m going back to Germany. Not ideal but neither is staying on antibiotics for months to years on end.

I think I posted updates from the hospital when I was there on the Healingwell forum but I’m not sure how you can find it. Maybe Gielie might know if there Is an archive if previous posts somewhere?

WV Mike said...
Garzie, my Dr had me stop dapsone before starting dsf saying there was a drug interaction between the two. Not sure if they can be taken together m. That being said I didn't get the message until I had taken both together for a week or so. I didn't notice anything.

Mike, Yes, I think I have read that elsewhere on here - some kind of interaction between the two - but I am pretty sure I also heard Dr. H refer to an upcoming trial of each against the other and then used combined on a presentation in the last 12 months or so. maybe they have since found issues with the combination.

Author of a book titled “How Can I Get Better?”