LLMD In Philadelphia Area? & General Help? We are lost.

Hi Everyone,

Thank you for taking the time to read this as it is going to be long.

My boyfriend of was diagnosed with Lyme Disease almost 3 years ago after feeling joint pain and lethargy for a couple months. We remembered pulling a couple ticks off of him a few months prior in the spring, but didn't think much of it as a rash wasn't noticed. His Primary Care doctor prescribed him Deoxycycline for 3 months. He started feeling better after a couple of weeks. But being the freshly turned 21 year old that he was, he would irregularly take the antibiotic, opting to go out with his friends and drink, going days without taking his medicine. But overall he felt much better until about 6 months later when worse symptoms returned in full force. The fatigue, muscle and joint pains, constant thirst, memory and concentration problems and an overall "brain fog" with nasty headaches consumed him and still does to this day. We have been to MANY MANY infectious disease doctors over the past 3 years and no one believed it was Lymes because he didn't come up positive for the standard test. But he has been steadfast in his belief that he does have Lymes as he feels the same but worse than he did when he was first diagnosed. He has also had high liver levels that come up on his blood work and high blood pressure. We have been told that he has everything from chronic fatigue syndrome, to diabetes to hepatitis c. And we have been told by multiple doctors that Lyme Disease does not exist.


He has suffered for so long his symptoms seeming to get worse each month. When he had a fever for over a week, we got to the point where on June 28th of this year we took him to the emergency room. He immediately tested positive for mononucleosis and 2 days later we got a call that he also tested positive for Lyme Disease. The first appointment we could get with an infectious disease doctor was today and he left sobbing because the doctor told him that Lymes doesn't exist.

We are at our wits end and would appreciate ANY advice and if any one knows of a Lyme Literate Doctor in the Philadelphia Pa area please let me know. Cost and insurance are not an issue at this point we just want him healed. On top of everything else, he has also lost 40lbs, has developed anxiety and depression and his short term memory is EXTREMELY poor.

I know this disease isn't a myth and I am determined to do whatever it takes to cure this nasty disease.

Thank you. I wish you all peace & wellbeing.

Thank you I think I just enable it.

Welcome! First, know that Lyme Disease DOES exisit and your boyfriend clearly has it, as he has tested positive. He knows his body better than anyone, dont let him forget that. I have never even been tested and was diagnosed by 4 doctors with Lyme so there are definitely doctors out there who know that it is REAL. I am so sorry that you guys have had this added stress and frustration of uninformed "doctors" not recognizing your disease. That should NOT be happening in 2015! But it does. Often.

Hopefully other members will help you get the names of some Lyme Literate Doctors in your area. That makes all the difference in the world. The first two doctors that diagnosed me did not know the correct dose of abx I needed and I wasted some time on some useless meds, but after seeing a LLMD it was very different. Im so glad you found this forum. These warriors are amazing people and will welcome and help you anyway they can. Good luck with your journey!!

Hi KCS!
Welcome to our community!! I'm so glad you found us!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you can also send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can also email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​

And ILADS also has a LLMD referral: ilads.org/ilads_media/physician-referral/


​ As as Jrpsf has said, ID docs are not the ones to go to for these infections. You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php

You're boyfriends' actions, while understandable in a way, prevented him from getting rid of the bacteria when he had the chance - so he has to go back into treatment and must stay in treatment until 2 months past the resolution of all symptoms.