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Need a Bartonella specialist for my 13 year-old son with a classic Bartonella stretch mark rash on his back. We live in Burlington County which is in South Jersey and easily accessible to Philadelphia. Anyone affiliated with CHOP or Saint Christopher's?
Posts: 1 | From NJ | Registered: Nov 2016
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Welcome to Lymenet! PM sent for PA, MD & CT.
I have a lot of information for you so please bear with me.
My son also had the classic red stretch marks on his back, but it took SIX YEARS just to find out it what they were and what was wrong with him! He had countless "diagnoses" from different doctors and hospitals. Turns out it was Lyme Disease all along along with other co-infections which come with Lyme.
Hospitals are not good places to be treated for Lyme - I would steer clear of them! Many Lyme patients on Lymenet have horror stories to share about their experiences.
Here are some comments:
"I don't know of ANY hospitals that know ANYTHING about Lyme."
"I don't know of ANY hospitals or high profile clinics or any infectious disease doctors who understand Lyme and will treat it effectively."
"There are no Lyme doctors at major hospitals. They will not diagnose you there. And even if by some miracle they DID, they would not treat you past 2-4 wks."
"Lyme will get you run out of hospitals faster than you can believe."
"Most hospitals do not recognize chronic Lyme and do not know how to treat it."
In order to understand this and the politics surrounding Lyme Disease and its treatment as well as to gain an understanding why most doctors are just not going to be able to treat, view this link:
"Two Standards of Care Revisited: Should Lyme Patients Have A Choice?"
Your dear son needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Here are comments from old posts regarding Lyme doctors in NJ:
"The LLMDs in NJ are not very good based on patients' experiences. People start with them then end up going to see other LLMDs out-of-state."
"Over the years, the folks in New Jersey have said that the best Lyme doctors are not there."
"I strongly suggest that you be willing to travel outside of New Jersey to get good treatment."
"There are Lyme doctors in the area you have named, but I don't recommend any of them. To get a good Lyme specialist, you will have to be willing to travel. At least half of all Lyme patients go out of state for their care."
When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.
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