Phone Call From Jackson’s Pediatrician

First off, Jackson tested negative for TB…woot!  I forgot to mention from Jackson’s 3 year old well visit appointment on Monday that Jackson is in the 95% for height and 75% for weight.  It is possible to gain weight and grow on GFCFSF!  I’m so thankful that Jackson is growing and has that going for him.

Yesterday, when I took Jackson to get the TB test read, I turned in copies of all of Jackson’s test results for the pediatrician to review.  He called me back yesterday evening to go tell me his thoughts.  Let me start by saying the conversation confused me even more than I already am.  He doesn’t believe Jackson has Lyme and that we should be extremely skeptical of the DAN/LLMD we are seeing.  He said the test results do not give appropriate information to treat Lyme.  I asked about the Quest test that specifically reported that Jackson has Borrelia Hermsii.  The pediatrician said that Borrelia Hermsi is not Lyme but a different bacteria.  So when I asked what we do about that, he didn’t have any answers.  The pediatrician was highly skeptical of our LLMD and suggested we think hard about this diagnosis and the treatment we are receiving.

Luckily, we go see the LLMD today, and I want to ask him some tough questions.  Why have we not seen ANY changes in Jackson?  What is Borrelia Hermsii?  Are you surprised, 3 months into treatment, that Jackson has not shown signs of improvement?  Are the tests we have done proof enough that Jackson has Lyme?   Is what we’re doing working or do we need to change things up?

It’s really tough being caught in the middle of two medical professionals having two completely different ideas on what we should be doing.  I need  some reassurance and information to know that the path we are traveling is what’s best for Jackson. I don’t like the feeling of doubting myself and my doctors. I’m being completely honest here, and hopefully will have more information to have piece of mind after today’s appointment.

I’ll report back…

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2 thoughts on “Phone Call From Jackson’s Pediatrician

  1. Wow! Sounds like your family has been through a lot. It can be so frustrating being told different things by different doctors. I hope you got some answers from your LLMD. I struggled with a Borrelia hermsii infection–as well as two other infections–for several years and saw a lot of different doctors before getting diagnosed, and finally got successful treatment with IV ceftriaxone last summer. It’s heartbreaking to see how destructive these infections can be, especially in children.

    • Thanks for your comment! Lyme is definitely seems to me to be the trickiest disease, from diagnosis to treatment to recovery. Glad you are finding some treatment that works. We’re still looking some progress with Jackson. Good luck!

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