LymeNet Flash: Seeking Lyme specialist in South Central PA

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»	LymeNet Flash » Questions and Discussion » Seeking a Doctor » Seeking Lyme specialist in South Central PA

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Topic: Seeking Lyme specialist in South Central PA

Tnation
Junior Member
Member # 49226

posted

We were seeing Dr. B in CT and have done IGENEX testing, etc... We've been on multiple antibiotics foe several years. We need a new doctor in state. I lost my job and cannot continue to travel or pay for him. My kids have PANS as a result of congenital Lyme. They receive HD IVIG every 6 weeks but the doctor ordering that isn't a LLMD. He believes in PANS and is willing to continue Dr. B's treatment for ne. My oldest is getting Lyme symptoms back even though she's on 3 antibiotics still.

Willing to travel. If in PA have a chance to submit to Medicaid for what our primary doesn't cover.

Thanks

Posts: 1 | From PA | Registered: Nov 2016 | IP: Logged |

hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

posted

Welcome to Lymenet! PM sent for PA.

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

Unfortunately, LLMDs are far and few between. You need 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.

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

Maybe they can help. They would know better about PA.

Some more resources for you (including Support Groups info):
www.lymepa.org

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

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

Here is a link for you with good information (you should also contact them for more):

http://www.childrenslymenetwork.org/

This is a link from that website specifically about PANDAS/PANS:

http://www.moleculeralabs.com/what-is-pans/

http://www.childrenslymenetwork.org/children-pans-pandas/

Here is a link with a great deal of good information about Lyme and children:

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

Links about teenagers and Lyme Disease:
https://www.lymedisease.org/45/

http://www.livingwithlymedisease.org/teenagers-with-lyme-disease.html

http://www.lymefight.info/lyme-disease-general-information/children-teens-and-lyme-disease/

Here is a link found on Lymenet for "Financial Help and Other Information":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=023463;p=0

The Lyme Disease United Coalition has good information for financial resources on their website:

http://www.lduc.org/lyme-disease-resources

Scroll down for financial help, etc., available from several sources.

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%.
View on www.lymetap.com

"Help For You" link here...

https://sites.google.com/site/marylandlyme/help-for-you

The top LLMD, Dr. H, has written a book entitled, "Why Can't I Get Better?". It is 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 this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.

Posts: 8981 | From Illinois | Registered: May 2006 | IP: Logged |

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