LymeNet Flash: Seeking LLD for teen in NC

LymeNet on Facebook

LymeNet on Twitter

Follow @LymeDiseaseNet

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive

The Lyme Disease Network is a non-profit organization funded by individual donations.

»	LymeNet Flash » Questions and Discussion » Seeking a Doctor » Seeking LLD for teen in NC

UBBFriend: Email this page to someone!

Author

Topic: Seeking LLD for teen in NC

KTY
Junior Member
Member # 48617

posted

My teen is experiencing symptoms of nausea, abdominal pain, joint pain, headaches, chest pain, blurred vision, and fatigue - as well as depression and anxiety. Symptoms, which have been on going for about 3 years, are getting worse and more debilitating. In addition to a pediatrician and a family practitioner, have seen a GI specialist, Infectious Disease Dr and an Opthamologist. Lyme bloodwork indicated 4 out of 10 markers and 2 out of 4 markers....all other bloodwork, GI emptying, and MRI are showing as normal. Dr at major university medical center will not commit to Lyme! Please help me find a Lyme literate doctor so that we can diagnose and treat my child who is begging for relief. Your assistance is most appreciated!

Posts: 2 | From Durham, NC | Registered: Aug 2016 | IP: Logged |

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

posted

Welcome to Lymenet! PM sent for NC.

Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Here is a link for you to read about "Two Standards of Care":

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-two-standards-of-care-revisited.html

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 is a link for them:

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

Unfortunately, LLMDs are far and few between. He 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 you call for an appointment, ask if there are 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/NorthCarolinaLyme/info

Maybe they can help you.

Some more resources for you (including Support Groups):

http://whatislyme.com/lyme-in-north-carolina/

https://www.facebook.com/pages/NC-Lyme-Advocacy/290956021030771

http://www.nclyme.net/

Here are a couple of links about Lyme and children with very good information:

http://www.childrenslymenetwork.org/

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

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/

The top LLMD, Dr. H, has written a book entitled, "Why Can't I Get Better?". It is an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. Check 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.

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

Tincup
Honored Contributor (10K+ posts)
Member # 5829

posted

Greetings!

www.TreatTheBite.com

Might want to try printing out the one page treatment guidelines from the site above and taking them with you to a local doctor.

If they see them, and they know YOU know, they are more likely to treat.

If you need anything further....

If you go to www.VirginiaLyme.org you will see a "doctor referral" page on the menu to your left.

There you can find names and contact information on Lyme treating professionals in all states that have them.

Good luck!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004 | IP: Logged |

Printer-friendly view of this topic

The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA
http://www.lymenet.org/