LymeNet Flash: Pennsylvania (or nearby) Dr. Needed

This is topic Pennsylvania (or nearby) Dr. Needed - neuro in forum Seeking a Doctor at LymeNet Flash.

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https://flash.lymenet.org/ubb/ultimatebb.php/topic/2/27884

Posted by Mama2six (Member # 38069) on :

Hi,

I became sick in 2012 all in one day... it took 8 months to become diagnosed with lyme, and I saw a LLMD and was treated with oral antibiotics for 17. This did not help.

I've had various other diagnoses, and seen various other doctors. I am now unable to be around people because certain smells (deodorants, perfumes, shampoos, cleaning products, molds) set off a neuro reaction and seizure-like symptoms. I've been diagnosed with epilepsy, and then told it was a misdiagnosis by an epilepsy specialist. Meanwhile I still struggle!

I'm willing to drive up to a day's drive away to see a doctor who can really help me. It may be MCS, or something MTHFR related, or it may be Lyme or a co-infection, or a combination of all of it!

Thanks, everyone!

Posted by TF (Member # 14183) on :

Hi, and welcome to LymeNet. I sent you the name of a top notch lyme and Morgellons specialist. You are very fortunate that she just decided to start taking new patients again.

You can easily drive to her in much less than a day.

What part of Pa. are you in?

Posted by hopingandpraying (Member # 9256) on :

Welcome back to Lymenet! PM sent for MD & DC.

You need 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. You need to go where they are. At least half of all Lyme patients travel out-of-state for their care.

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.

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

Maybe they can help.

Some more resources (including Support Groups info):
http://whatislyme.com/websites-and-support-groups-by-state/

www.lymepa.org

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

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

Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do that, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.