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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » Seeking LLMD in NYC area (will travel)

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Author Topic: Seeking LLMD in NYC area (will travel)
LymeHealing
Junior Member
Member # 50943

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Hi, looking for LLMD in NYC or CT or NJ. Based in NYC.

This involves a 7 year old child, too, who experienced a bull's eye rash, but initial Lyme test came back negative. I've been reading all about why that happens.

Also, we are open to integrative doctors and treatments. Someone told me about Buhner's protocol, but I'm not sure if that is right for a child.

Thank you in advance for any advice and referrals. I will check my private mails.
Cheers to all.

LymeHealing

Posts: 1 | From United States | Registered: Oct 2017  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

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Not many lyme doctors will treat a child as young as age 7. Not many at all. So, if that is the patient, you may need to travel a good distance.

Excellent lyme docs who treat children that young can have very long wait times.

I know a top lyme doc who will treat her. Wait is about 7 months. Doc is in Washington, D.C. You only have to appear in person once every 6 months. You can do telephone appointments the other months.

Let me know if you want the name.

If the child has symptoms, then the lyme specialist will treat the child. However, if the child does NOT have symptoms, none of the lyme specialists I recommend will treat her/him. They say to leave well enough alone. The immune system is handling the illness.

A good lyme specialist knows that lyme tests are unreliable. A negative test means nothing. A positive test, however, is significant.

Also, it takes at least 6 weeks after a tick bite for a lyme Western Blot to be positive for lyme. That's how long it generally takes the immune system to produce antibodies to lyme. The lyme tests are generally all antibody tests. They do NOT look for the lyme bacteria in the patient's blood. So, they are indirect tests.

If you have not yet read the Burrascano Lyme Treatment Guidelines, I strongly suggest you study it to get an education on this disease. It is here:

http://www.lymenet.org/BurrGuide200810.pdf

Read p. 7 regarding testing. This tells you how a lyme specialist SHOULD diagnose a person.

Be sure you understand all of the terms used in this document. The document was written to other doctors, so you may need to look up many terms to properly understand what it is saying.

The doc I recommend follows the Burrascano Guidelines regarding how to diagnose lyme disease. She will treat in line with these Guidelines also. She is top notch and well known in the lyme world. She and both of her young daughters had lyme.

Welcome to LymeNet! We will help you here all we can.

Posts: 9880 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
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Welcome to Lymenet! PM sent for CT.

Your child 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 is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

LLMDs are far and few between, unfortunately. He/she needs to go where they are.

Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

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.

Here are some links for you with good information about Lyme and children:

http://www.childrenslymenetwork.org/

https://sites.google.com/site/drjoneskids/symptoms-literature

https://sites.google.com/site/drjoneskids/home

Here is a link for a book titled, "When Your Child Has Lyme Disease: A Parent's Survival Guide" which also might be helpful:

http://www.lymeliteratepress.com/

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/NewYorkLyme/info

Maybe they can help.

Some more resources for you (including Support Groups info):

http://www.nyclymesupport.org/

http://whatislyme.com/websites-and-support-groups-by-state/
www.empirestatelymediseaseassociation.org

http://www.lymenet.org/SupportGroups/UnitedStates/NewYork/

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.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

Posts: 8326 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

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Thank you, hoping, for responding to this post; I have been meaning to for way too long.

Since you are in the NYC area, besides all of the great information that has been posted, I strongly suggest coming to the NYC Lyme Support Group. It meets the 4th Monday of each month [URL=http://www.nyclymesupport.org/ ]NYC Lyme Support Group[/URL]

The group is very educated and can help you figure out who to see that is best for your circumstance.

Does your child have symptoms?

I'm not sure if you are checking this thread, however.

Posts: 3479 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
   

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