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CHOP - Are they Lyme informed?

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Posted 6/29/2017 2:54 PM (GMT -5)
My 9 yr old daughter had a PICC line placed a week ago. Two days later she had a blood clot and they removed the PICC line three days after placement. She is on 2x daily blood thinner injections for the next three weeks. If after that time we can discontinue the blood thinner her doctor may consider placing another PICC line. My question is, the hospital we took her to was not at all Lyme savvy, nor did they want to be. They accused me of putting her health in jeopardy and told me a clot is the price we have to pay for placing the line. We live on the east coast and my question is: is CHOP (Childrens Hospital of Philadelphia) good with Lyme patients? If we place another line and she would get another clot I would hesitate to return to the hospital where she had her line removed.
Posted 6/29/2017 3:12 PM (GMT -5)
Welcome sandramomof4,

I haven't heard of that hospital in the Lyme community.

Is there a specific reason they are prescribing the IV abx instead of orals? Does your daughter have stomach issues?

I would make sure your daughter is seeing a LLMD for treatment.
Find out if the treating Dr. is an ILADS member to start.

Also - maybe take her for a second opinion. We can help you find a LLMD- start a new thread: Looking for LLMD in/near________
and fill in the blank.

You can also contact ILADS for a physician referral:
(You may be able to ask them if the treating MD is a member.



ilads.org/ilads_media/physician-referral/


We encourage our members to read through the thread at the top of the page titled: New To Lyme?...Start Here!"
It's got a lot of useful information.
Posted 6/29/2017 3:19 PM (GMT -5)
Thanks! She is currently seeing a LLMD and is receiving IV because the oral meds were not working for her. The Lyme is affecting her brain.
Posted 6/29/2017 3:33 PM (GMT -5)
So the LLMD has prescribed the IV - but he doesn't do the procedure in his practice...that's why she is going to the hospital for infusions?

Accused you of putting her health in jeopardy because she is getting IV infusions for Lyme disease? If that's true...I'd seriously consider finding another hospital to do them


Hopefully another poster who is living in the area will have an idea for you.


Having Lyme in the brain isn't reason enough for IV meds...but there is obviously a reason - or the LLMD wouldn't be wanting the IV done. Often the abx don't start working immediately...hopefully the LLMD gave it a fair try - as in several months, and trying different combinations.
Posted 6/29/2017 5:49 PM (GMT -5)
Oh my gosh, your poor child and what a worry for a parent.

I am so sorry.

I agree with Girlie. If the hospital said this to me, I would find another place to have that picc line done.
Posted 6/30/2017 7:38 AM (GMT -5)
The LLMD works with a hospital nearby and that is where she had the line placed. However she went to a hospital that specializes in pediatric patients when she had her blood clot. She has an appointment with her LLMD next week I want to discuss this issue with him because I fear what might happen if she has another line placed and gets another clot. She was on antibiotics from November 2016 - May 2017 and while we always saw herxing for about a week after each new antibiotic, she always went back to how she was prior to starting the new antibiotic. I must add she was not seeing a LLMD that whole time, she only began seeing him in March. The fact that she didn't respond to oral meds, plus her stomach is a mess which is why he placed the line. I am so glad I found you guys, thanks for taking the time to answer my questions!
Posted 6/30/2017 9:50 AM (GMT -5)
I would encourage you to bring up these very valid concerns about that hospital with your LLMD. They may be the best ones to help you find the right places nearby that will be more understanding of your daughter's situation. No one needs that kind of harassment while they are dealing with their sick child, and your daughter certainly doesn't need it!

If the IV doesn't seem to be helping a lot once you get into treatment, you may wish to explore adding in an herbal protocol. There are quite few members here that need to use both. The herbs add balance to her treatment as they work by enhancing the immune system and making it easier for her body to heal from these infections.
Posted 6/30/2017 9:54 AM (GMT -5)
Some people just can't do antibiotics. I got sick after 3 weeks of them. I had to switch to an herbal treatment and I healed.
Posted 6/30/2017 10:07 AM (GMT -5)
Did you work with a naturopath to find the right herb combo or did you figure it out on your own through trial and error? We are looking into adding herbs to my daughters meds.
Posted 6/30/2017 11:01 AM (GMT -5)
sandra - Many of our forum members do the Buhner herbs. He has written books on the infections and there are protocols he recommends.

The herbs can be ordered online.

There are also herbalists that Buhner recommends - they do phone consults to help guide you.
Many (most) people just add the herbs in on their own.

There are other herbal protocols, besides Buhner's - but I'd say that one is the most popular.
Posted 6/30/2017 11:28 AM (GMT -5)
Hi,

Took my son (26) to CHOP few years ago and NO, they didn't believe he has/had lyme even though had blood work to prove it....my son also only mentally affected, suggested seroquol.
Won't go back.

frikfrak
Posted 6/30/2017 11:41 AM (GMT -5)
frikfrak - sorry for your son's experience. How is he doing now?
Posted 7/1/2017 12:42 PM (GMT -5)
I'm familiar with CHOP. They are not Lyme friendly. They are very well-known for their CRPS/RSD program for children.....i think they call it AMPS.
Posted 7/1/2017 5:25 PM (GMT -5)
No, I went there for years complaining about symptoms and when I finally realized I probably had Lyme from online, I asked them to give me a Lyme test and the doctor refused because there are too many "false positives/negatives". I live in NJ btw.
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