childhood lyme disease

my eleven year old daughter all of a sudden had a knee the size of a football.  I took her to ER they thoght it could not be lyme because she had no pain.  the ped. ordered lyme test which was positive.  she began anitbiotics on september 8.  she was on 3 weeks of doxocycline.  then she had her knees each drained 2 times.  then she was put on high amoxicilin for ten days.  she still was not better and her knees were swollen.  we went to infectious disease specialist who immediately ordered IV antibiotics for 28 days.  she was not getting better but the doctor thought she needed the IV out.  the iv was taken out two days before thanksgiving.  after 9 days of no iv treatment, she woke up with swollen knee.  I called pediatrician and specialist.  they ordered another twenty eight days of iv antibiotics but double strength.  yesterday we had the knee drained and tapped for testing, today she woke up with the fluid back on her knee. I went and retrieved all lab results from hospital to try and understand what is going on.  my question is what should I do now?

[JackieCalifornia]

I am very sorry to hear what your daughter (and you) are going through.

I'm not medically trained, but I am impressed with the efforts the docs have made, compared to what the rest of us have too often encountered when presenting with Lyme.

Was your daughter tested for co-infections, that is, other diseases besides Lyme which are often carried by the same ticks?  You should be able to tell from the lab results you have copies of.  Which tests are conducted should be based on presenting symptoms, and the docs may have done that analysis and done the separate tests.  These coinfections sometimes need different meds from Lyme.

If the docs are stymied or if you simply want some additional data (a very reasonable thing to do, imo), you could find a completely separate Lyme specialist for a second opinion, taking all the test copies with you (but keeping a set for yourself).  Different docs have different approaches and choice of meds and lengths of treatment, so you may get different advice.

Lyme has a very slow reproductive cycle, so a longer than usual course of antibiotics is called for, according to the more progressive thinkers ... the reason being that the bacteria are susceptible to the meds when they are dividing.  28 days is a decent length of time for a recent Lyme infection from what I read, but because Lyme is such an oddball infection, the docs need to be nimble and treat the patient, not the medical book.  That's the reason you might want to get a second opinion:  much is unknown about Lyme, and a different doc might perceive something the others didn't.  Treating for several months is not an uncommon approach among the more progressive Lyme docs, but every case is different.  Generally speaking, I understand that the sooner the treatment is begun after the infection, the faster the treatment is effective.

You might want to read at ILADS [dot] org, under the tab 'About Lyme', a posting called 'Diagnostic Hints and Treatment Guidelines' by Joseph Burrascano MD.  It gives a sense of the puzzles and cul de sacs inherent in treating Lyme and may give you some ideas of where to take things next.  ILADS is the organization for more progressive Lyme docs, but mainstream docs sometimes (often) sneer at mention of ILADS, but I read it simply in self-defense.

3 weeks of doxy, then 10 days of amoxicillin, then 28 days of IV something, then 28 days of double IV something sounds like pretty substantial treatment ... so in your shoes, I'd get a separate, independent opinion.  I also might not tell the current docs I was doing that, so as not to offend.  If you google/search "connecticut LLMD" or check these websites, you might find some referral functions:

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com

"LLMD" is not a medical title ... it's short for Lyme-literate MD, slang we patients use to refer to docs who get that Lyme and the coinfections are more complex that regular docs sometime realize.

Let us know how it goes, okay?  Best wishes to you and to your daughter --