Your 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.
LLMDs are far and few between, unfortunately. He needs to go where they are.
Here are some quotes from old posts about NJ:
"There are NO good LLMD's in NJ. NJ is a wasteland of bad docs. I can tell you from years of experience, unless you go with an established doc (of which there are only a few on the east coast) you will get under-treated and continue to relapse.
PLEASE TAKE MY ADVICE. NJ is a bad place for ticks and a bad place for tick doctors."
"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."
Read the books written by the top LLMD, Dr. H titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi, Worried Mom. Very few lyme specialists treat children that young. So, you definitely will have to travel to get good care.
And, generally they also do not take insurance. They have to spend so much time with a lyme patient that they can't afford to accept insurance reimbursement. It would cause them to lose too much money.
The first appointment is at least 1 hour with the doctor.
I know one doc who sees children this young. She is in Washington, D.C. I will send you her name.
The doc in Connecticut fell recently and I don't know if he is back to work yet or not. He is about 85, so he could be off for a considerable time due to that fall.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Worried...
FYI- Dr. J in CT is back at work and continues to treat the sickest of the children, bless his heart.
If you go to www.MarylandLyme.org and look at the menu to your left you will see "DOCTOR REFERRALS".
Click there to find the names and contact information for health care professionals in many fields who are treating Lyme & TBD's in all of the states that have them.
Here are some ways to locate alternative health care professionals too.
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