posted
My apologies in advance if I give too little info. Not sure what to include.
Dd was dxd 6/09 based miraculously, it would seem, on western blot ordered by ped. rheum in OH. She was pos. on many bands (maybe 9?).
She was treated with abx (doxy?)for 4 weeks. Swollen knee (only original symptom) was somewhat but not totally better but she was developing hives and the day she went off she had Baker's cyst in calf.
I had done some reading on Lyme and was unnerved by new symptoms coming up and residual swelling and ped. rheum's saying this was all coincidental, not likely related to lyme. So I found an LLMD in PA.
It took a few months to get in, but he started her on doxy and clarithromyacin. I am forgetting some details of when and what, but the end result is that after a year, she seems to be completely without symptoms (and has been for 6-9 months).
He suggests she stay on abx indefinitely. She has no apparent problems with the abx (she is on probiotics too) and he said the Lyme could creep back in and cause symptoms we don't notice right away such as muscle issues or affect her intelligence.
He said it is possible the hormones of puberty (she just turned 10) could worsen potential symptoms.
I am uneasy keeping her on abx indefinitely but the what if of Lyme is pretty scary too. I feel so lucky we found out what she had right away (but still several months after the bite, though we never saw a tick or rash).
I don't want to push our luck but I don't like the unknown/unseen side effects of the abx.
Is there any chance it is just gone or is it going to pop up again sooner or later?
Is it worse to go off abx and then possibly have to try to treat it more aggressively?
Does anybody just stay on abx forever? What side effects are experienced in that case? What should I look for?
Thanks in advance! Sorry this is so long!
-------------------- DD dx 6/09 at 9 yo Posts: 6 | From United States | Registered: Jun 2009
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
All I know is that most LLMDs and Dr. B. recommends to stay on abx until 2-3 months after the last symptom has disappeared.
In my case-when that happens I will be going off them. If I suffer a relapse at least I know what to look for now. I can't imagine being on abx for the rest of my life.
posted
I will look more into Dr. B's protocol. I read some of that last year when I was first researching and will revisit.
I wonder about reasons to stop abx if they are not causing obvious problems or where to look for this info? I guess I just feel the need to justify to myself and also to my dh as we think this through.
Thanks!
-------------------- DD dx 6/09 at 9 yo Posts: 6 | From United States | Registered: Jun 2009
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massman
Unregistered
posted
"The Real Truth About Vitamins and Antioxidants" by Judith DeCava RN.
posted
My daughter's LLMD changed her meds around after she was 2 months symptom free to see if it would cause a herx. After one month of that, he took her off meds and she's been fine for the past year or two.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I agree with the above posters Dr. B say 2-3 months symptom free and it is ok to go off abx... I cant imagine wanting someone to be on abx forever "just in case"
I would talk it over with you llmd... But I think at least allowing her to try life without ABX is worth it. I know I hated taking all those pills a day.
Posts: 286 | From St. Louis | Registered: Dec 2009
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