Is my child starting to relaspse or am I just overreacting

Its 11pm at night all my kids (I have 7) and husband are sleeping and I have had a glass or two of wine so hope this does not sound crazy.

I am worried about my daughter. She went undiagnosed with Lyme for over 6 years and always had major symptoms of leg pain and inability to walk on and off before diagnosis whenever she would get ill. I have some background on this forum with more details.

She was treated by the best pediatric Lyme doctor who also diagnosed her with Bartonella and babesiois duncani. She was on antibiotics for a little over a year and almost a month ago was given the all clear to stop antibiotics. Her last round of blood work she still had a titer (1:256) for bartonella but her doctor did not order blood work from her last visit because since she did not relapse when she had a stomach virus she was better. Her duncani titer was negative and there was nothing significant on her lyme test (all tests at Igenix and galaxy labs so good labs)

But since stopping antibiotics one day she did complain about leg pain but it was after she woke up and she said it went away and the rest of the day she was fine. Today she mentioned her ankle hurt which also seemed to go away as she was active as usual. She has complained about being tired. She is on melatonin to help with sleep but still complains about insomnia.

Question is how do I know if its a real relapse or I am just being a overreacting crazy mom. I am keeping track of her symptoms (?) but I don't want to drive me or her crazy. I am an avid reader and researcher and I keep reading that it is so hard to cure Lyme etc.

Advice on those who have relapsed. Talk me down off the ledge. My mom gut says its not quite time to contact her Lyme doctor (who is wonderful but is expensive and I don't want to take his time for nothing).

I just want her to have the best healthy life. She has been through so much I just want her to have a "normal" rest of her childhood (she is 10 now)

Girlie said...
I would call the LLMD office and explain what's going on. You are concerned and rightly so.

No harm in phoning.



BTW Do you know if Dr. J. is taking on new patients? (I know he's been trying to retire for awhile now...bless his heart)

I think he is still taking new patients but I know he was really sick awhile back with the flu and his office was closed for awhile. He has a go fund me page as he is trying to update his office with computerized records etc.

Megan Eliz said...

Girlie said...
I would call the LLMD office and explain what's going on. You are concerned and rightly so.

No harm in phoning.



BTW Do you know if Dr. J. is taking on new patients? (I know he's been trying to retire for awhile now...bless his heart)

I have not dealt with any sort of relapse before as this is the first time since she was treated for Lyme.

Does this strike you as a possible relapse. It is so hard for me to judge since I was told for so many years before Dr J that it was just a virus or it was all in her head but also that the "apple didn't fall far from the tree" from her rheumatologist that I inferred to mean I was contributing to my daughter's illness

So the month prior to her stopping abx, she didn’t have any leg pain or complain of fatigue?

I think a phone call to the LLMD office would put your mind at ease.
They might tell you to give it another few weeks and see ... or they might suggest treating for a few weeks.

I really don’t know if it’s a relapse.

The body may need some time to heal - an ache or pain here and there that go away on their own - may not need treatment.

We have a member whose son is being treated by the other Dr J (DC) and he is now doing well.

She has her email available if you want to contact her

Here is a thread she posted about her sons progress

/www.healingwell.com/community/default.aspx?f=30&m=4006561&g=4007392#m4007392