Please help me get started with this lyme stuff! I'm so confused and scared.

After dealing with elbow pain for the past 3-5 months, I decided to go get tested for Lyme Disease. My results came back positive. The doctor has no idea how long I've had it or anything. She wants me to be on antibiotics for 21 days. I'm not comfortable with this. I'm not confident in her Lyme experience and if this is my best option or if it'll even take care of things. She's a very young general family practice doctor.

How do I find a doctor who actually knows a lot about Lyme Disease and treating it? I asked friends if anyone had any recommendations. I got a couple people who referred me to "Natural Medicine" people. This may be an option, but for now I want a doctor who can read my results and give me answers about things and discus my next steps. Everything I read online just scares me more and more and more.

Please help.


I'm in the Minneapolis, Minnesota suburbs in case any of you are from here, too.

Thanks in advance for any help you can give.

Hi yoyo284 - welcome.

i'm sorry you are feeling confused and scared. Many of us have been there.
I was so scared when I didn't know what was wrong with me..what was causing these horrible symptoms.

I'm glad you found us here..we can help you. This is a great place - lots of knowledgable and caring people here.

To find a LLMD, you can start a new thread titled: "Looking for LLMD in/near Minneapolis, Minnesota."
Then enable your email option so members can send you names privately. We don't post the names of the LLMD's on here for privacy reasons.

Also - you can contact ILADS:

ilads.org/ilads_media/physician-referral/

In addition, you can send me an email and I will check my list of LLMD's and send you names I have. Please state in your email what area you are searching.
Just click on the envelope under my screen name on the left.

We encourage all our members to read through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.

Welcome, we are glad you found us!

Hi yoyo284!-

Welcome to our community. I am sorry to hear that you also have Lyme disease. I hope that you stay around. There are a lot of friendly people here.

For information on finding an ILADS (International Lyme and Associated Disease Society) trained Lyme Literate Medical Doctor (LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under "edit profile". Be sure to click the submit button to actually save your preference.

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

You can 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 a new resource www.LymeDoc.org

You can also send an email to Traveler. She is a moderator here. She might have some referrals around your area. Click on the blue envelope under her name.

You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to get 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: www.lymenet.org/BurrGuide200810.pdf

Best Wishes!

Hi yoyo -

A lot of great info posted for you already.

I just wanted to share that it's natural and expected to be scared and confused. The Lyme experience is a whole other ballgame.

This might not be much consolation right now - but please know that you have several yhings working in your favor already:

- a positive Lyme test is like the holy grail - due to the inadequacies of the testing protocols - NOT because of the absence of the infection - pos results are hard to obtain and some people spend years and thousands $ bouncing around many MDs, various tests and misdiagoses and ineffective treatments before getting to a Lyme diagnosis. You've skipped all that.

- most MDs have no idea what to do, how to test or want to avoid the Lyme controversy (criminal behavior) yet your MD tested you. It's a good start.

- part of the reason your MD was able to get to testing rather directly was your very classic arthritis joint sx! This is THE primary manifestation of the Lyme infection, according to the dx and tx guidelines most of he medical industry follows, which is why you're on abx already. Many of us have had to fight years due to all he other manifestations of Lyme that conventional medicine is only starting to realize.

- and even though you were infected awhile back your sx are very straightforward - so many other patients are dealing with 40, 50, 60 sx. This is a very good sign that you are fairly healthy and your immune system is functioning pretty well and this is critical for successful tx.

- and you are SO SMART to question everything and seek support. Because you are being proactive, your chances of nipping this in the bud are very high. You haven't developed cognitive issues that can challenge everything. You're asking all the right questions and taking control of the situation.

So for all of the issues you are faced with, at least you have a very good start. We're here to help! All of the accolades about this community are true!

-p

Post Edited (Pirouette) : 5/25/2017 1:57:12 PM (GMT-6)