Our Ped treated DS for Lyme for 3 weeks with Amoxicillin and now I am nervous about whether or not the course was effective. He seems fine, but he has Sensory issues and low tone and motor planning issues, so I am very afraid that the Lyme could return and we wouldn't be able to recognize it (if there were no rash or fever, for example).
Does anyone know of any follow up testing that I should request? I know there are some different levels of testing, but our Dr. said there's nothing more to do because there would still be elevated antibodies. Agh! I'm so uncomfortable about this. I know others have been treated for twice as long when testing still showed Lyme, but I don't know what tests were done. I know there is not test that could say the Lyme is 100% gone. Is there a period of time I should wait and then have him retested? Do I need a second opinion?
Thank you for any info!
Hi CloverHoney. Welcome to MDC!
From what my mother told me, she's a nurse and recently attended a conference on treatment of Lymes, it that they have significantly reduced the amount of time on antibiotics. My dh had it last year, and he was only on 2 weeks of antibiotics.
How did you know your ds had Lyme disease? Did he have any symptoms that you could look for reoccuring? Also, have you put your ds on any probiotics after the antibiotics?
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Hi and thanks!
That's what our Ped said - 2-3 weeks but they prefer 3 weeks to be sure it's fully treated. We knew he had Lyme because he was bitten on the top the scalp by a deer tick and 11 days later he had a fever of 103 and several bumps forming on his scalp that errupted with pus, and one large pink circular rash around the whole top of his head. His lymph nodes in the neck were also enlarged.
The problem is that the signs to watch for in recurring Lyme are either ones he can't tell me about (his speech is delayed), or are neurological/muscle weakness - and those are the things he already deals with since birth anyway. He is delayed in multiple areas, mostly motor skills.
We have him on a broad spectrum probiotic - and until today seemed to work, but he has started with thrush in his mouth. No diarreah or upset stomach. I'm treating now with Nystatin and will begin coconut oil for the duration of antibiotics if we decide to continue longer.
I hate to go against Dr.s orders and give another 3 weeks of antibiotics, but I'm so concerned that he could be effected neurologically - it's the last thing he needs. I have read some papers by "Lyme literate" Drs. etc. that suggest a 6 week course of treatment - but maybe they are just extreme?
It's a tough call to make. His chances were so slim that he would have contracted it to begin with, and I don't like all of the "most" and "usually" in the 2-3 week course information. I don't think some Dr.s think chronic Lyme exists.