Am I on the right treatment plan?

[darling787]

I realize this is a forum for PANDAS but I am still in desperate need for some guidance and support for what seems to be incurable strep. I'm 28 and last spring shortly after dental work I started having severe achy muscles , fatigue, and white stuff on my tonsils. I had never tested positive for strep via a throat culture but my ASO titer remains in the 400 range. I have been on over 10 different antibiotics but the ASO shoots back up. My tonsils are constantly inflamed with white patches. My doctor convinced me I may have lyme and had me on minocyline for months ( which does nothing for strep). After that seemed to fail she put be on zithromax but I had the worse flair/ herxing of my life. I literally couldn't leave the house, had dizzy spells, couldn't work etc. After stopping for a month I recently started penicillin VK 500 mg twice per day. My new rheumatologist wants me to double my dosage to 2,000mg per day for 2 weeks and then to go back down to 1,000 until my ASO is normal. My lyme doc thinks zith may have been effective and I should try that up again but in a lower dose. I am so confused as to whose advise to follow! Do I take the penicllin for a longer period of time or try the zith again?

 

My rheumy seems to feel strongly that Strep A is not resistant to penicillin but my tonsils and aches are still horrible after being on penicillin for weeks.

 

What do I do next? Thank you so much!

[LNN]

Why do you still have your tonsils? Tonsils can become chronically infected and no amount of antibiotics can get it all. I realize T&As are hared on adults, but that's the first thing I'd do.

 

If you still have issues after recovery, then I'd consult with a Lyme-literate MD for additional testing (with Igenex Labs - not a standard western blot) and more in-depth treatment if warranted. Using only one antibiotic for a chronic Lyme infection is rarely effective if you've had Lyme for any length of time. Unless you're leaving out a lot of details, I don't get the sense your current doctor really understands Lyme. (tho kuddos for being willing to treat it).

[WorriedDADNMOM]

I would agree on the tonsils. I also would say that while abx are hugely important....supplements for immune support and overall health are equally important and critical.....just in a different way.

 

Getting to a Pandas/Pans/Lyme literate integrative doc will be huge in seeing gains in health and immune function.

[darling787]

I still have my tonsils are they are often inflamed with white spots. That has been the one notable symptom, along with severe muscle aches, since I got sick last year following dental work. I am absolutely horrified to get them out since so many adults have post-op complications.

 

I go to an llmd and she's tested me for everything under the sun. The igenex lyme test didn't come back positive. She thinks its a possibility I have it but can't say with certainty. The only thing that comes back abnormal in my bloodwork is a high strep (ASO) titer that lurks around 400.

 

My muscle aches are always worse when my throat is inflamed. My tonsils never looked better on zitrho but it gave me major depression, anxiety, dizziness, etc. I was on bed rest. Since I have to maintain a fulltime job it scared me so I stopped taking it. Now a new rhuemy wants me on pencillin again and claims Strep A is not resistant to it I just may need to be on it for months before I get better. I am worried I do have a weird strain and the pencillin may not work...

[darling787]

Anyone have recommendations for a good doc who will treat chronic strep and possibly Lyme in nyc?

[LNN]

I work with a great Pandas/Pans/Lyme doctor in central CT if you want his info.

[darling787]

Yes please can you PM the name to me? Thank you!

[darling787]

Still really struggling! I was taking pencillin VK 250mg 4xs a day and my ASO dropped from 400 to 340 but now it's back up to 349. I also constantly have white ulcer like pus on my right tonsil. My llmd just started me on bicillin shots (2x weekly)...given I've had these throat issues for over a year maybe its time to consider a tonsilectomy but I am such a chicken. At 29 I am so scared the recovery would be too tough. My doc also says there is no promise it will resolved my ASO and body ache issue. I was thinking of trying the bicillin and then adding in zith or something else...thoughts?

[Mayzoo]

My daughter tested positive for strep, by culture, for over 60 days. The only thing that got rid of it was 45 days of Zithromax.

 

If you do not do well on zith maybe try augmentin. It is amoxicillin boosted with clavulonic acid.

 

There are also numerous medical articles you could print to show your rummy that strep is in fact resistant to penicillin. Here is just one that mentions penicillin 6 times:

 

"The failure of penicillin to eradicate Streptococci from the throat occurs in up to 35% of patients with pharyngo-tonsillitis."

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2640020/

 

 

 

If you want more look here: https://scholar.google.com/scholar?q=group+a+strep+resitance+to+antibiotics&btnG=&hl=en&as_sdt=0%2C44

Edited November 18, 2016 by mayzoo

[philamom]

Clindamycin is sometimes prescribed for persistent strep. But one would need to take a good probiotic, as it is known to cause c-diff.