Another in need of a LLMD

Forgive me, I know this question is asked a lot. But please send me contact info for a good LLMD’s in the Milwaukee area.

I contracted Lyme when I was 13. My knee blew up to the point I couldn’t walk. It was drained, I was given oral antibiotics and I was better for 8 years.

When I was 21, fatigue and joint soreness returned. I tested positive but was given no treatment. My soreness subsided and I was fine until I was 26.

At 26, it returned with a vengeance and went after my heart. I was diagnosed with myocarditis. Basically my heart muscle itself inflamed so large that it couldn’t pump blood. I was lucky to get to a great heart hospital in time to revive me and keep me alive. It took them 8 days to finally put me on intravenous antibiotics for lyme, despite that being the only thing I had ever been treated for in my medical history and the insisting of myself and my father to treat as if I had lyme. None of the heart doctors believed us but when they finally called in an infectious disease specialist he insisted on IV treatment and within days my heart started regaining function. I had a month of IV treatments everyday and I made a full recover.

Now, I’m 33 and I’ve tested positive again. Horrible neck and back pain that comes on with no warning. It’s sometimes accompanied by horrible dizziness and fatigue. After my second test came back positive my doctor referred me to specialists. Those specialists didn’t even bother to call me back for a week. Instead they called my doctor and basically told him that if I have already been given antibiotics 6 years ago then there is nothing they can do for me.

AM I crazy or have I just been referred to quacks? All the new studies I’ve read say chronic lyme is real and some patients respond very well to multiple rounds of antibiotics. I’ve responded positively to them twice already and only been bitten once. Please help me, the list of infectious disease doctors in MKE goes on and on and I have no idea where to start other than the doc that saved my life 6 years ago.

I understand we can’t post names on this site but I still have his name and would be curious if he’s considered LLMD by this community. If not I would love a list of trusted Lyme specialists who will even bother to talk to me at this point.

Thanks

Thank you from a forum newbie.

Hi Mkeman!
Welcome to our community!

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.
​
As far as the doc's that you've seen so far - they are definitely uneducated about these infections!! There are things you can do to find one that is much better educated though:

​You can send me an email by clicking on my screen name or the small blue envelop 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.​


You can email Stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

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


​ You can also now email TBDA (Tick Borne Disease Alliance) at medicalinfo@tbdalliance.org​
​ and ask for LLMD referrals also.
​

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 Lyme journey.www.ilads.org/lyme/ILADS_Guidelines.pdf

We are here to help you find answers and learn more so that you can heal and get back to your life!

But why is the question.