LOOKING FOR A" LLMD"... Specializes in Lyme Disease.....Infectious Disease Dr

Updated on April 19, 2013
Y.G. asks from Fort Lauderdale, FL
9 answers

LONGGGGGGG story short, I've been dealing with A LOT of symptoms over the past 2.5 years.... It all started after I came home from GA in August 2010 (after playing in the woods) and got sick (thinking it was just bronchitis)...The "bronchitis" never went away.

Since then I've had problems with:
-EXTREME fatigue
-weakness/numbness in my legs and hands
-burning feeling in my leg
-hands hurt like arthritis
-bad headaches
-HORRIBLE concentration
-foggy feeling
-dizzy spells
-nerve issues
-stiff neck
-can't spit out words

I've had every test done and they all come back negative... OR so I thought! My Primary "told me" he was doing a lyme test on me 2.5 years ago and come to find out 2 days ago, he never did it!!!!!! My husband has suspected Lyme for a long time now.. I know it's REALLY hard to diagnose. I'm beyond frustrated!!!!!! I question all doctors now....

They've thought: MS, Neuropathy, chronic epstein barr, etc etc etc etc.......

I have ALWAYS worked out!!!! Since I was 14 (I'm 34). VERY much a fitness gym person. Nowadays, my workouts are almost non-existent :( I have a 6 year old son... I would NEVER have all these symptoms "be in my head" (l I feel some doctors think it is after tests come back negative) and have this affect my son!!!!!! Ever!!! I have no energy for him 50% of the time. It makes me feel horrible...
I need answers!

I have read A LOT about LLMD doctors that specialize in Lyme Disease. It's so controversial though, so it's very hard to find a llmd. I would like to find a LLMD in Florida, but at this point, I'll go anywhere....

Being that "chronic" lyme disease is so controversial, most insurance companies will not cover long term treatment for it.... (it would be through an IV where I would get meds)

Any suggestions?
Does anyone have any personal stories for me?


Ps I wanted to mention, 11 months AFTER I got home from GA, one of the neurologists I went to gave me a Lyme test and it came back negative. Then a Infectious Disease Doctor gave me the test and it was also negative (a year later)... From reading about this A LOT, I know how inaccurate the test can be. Especially that I'm getting the test A YEAR LATER...

What can I do next?

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answers from Washington DC on

There is a specific Lyme Disease group on Yahoo that I believe is divided by state. I receive frequent emails from my group and there's a lot of good information. They're not allowed to name LLMD names specifically, but you can PM anyone to ask for information. Try this:


Click on "Join This Group."

You can sign up for emails. Hope this helps, if it's redundant information I apologize. Good luck. Lyme is a horrible disease. All the best to you.

2 moms found this helpful

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answers from Denver on

My daughter had Lyme, 3 forms of Lyme co-infectants, actually. She went undiagnosed for 4 years and during that time was tested for brain lesions, psychosis, every infectious disease that exists, and all were negative. It was a horrendous 4 years.

Finally I went to a website: www.lymenet.org and started looking things up. When you go to that site click on "flash discussion" on the left and there will be instructions on finding an LLMD doctor and lots of info.

Most importantly, make sure any physician you contact is a member (or supporter of, and by supporter I mean philosophically) of ILADS not IDSA. Those are two associations of Lyme researchers, etc. IDSA doctors generally do not support the concept of chronic Lyme or of Lyme having effects other than a brief flu-like illness. They believe the symptoms can be attributed to other things. ILADS supports the concept of chronic Lyme and all its effects.

My daughter's tests all came back negative. Her Lyme was actually the Babesia, Boriella and Bartonella parasites that were thriving in her red blood cells, lungs and ears. Because the parasites develop the ability to live with their host, and because they develop enzymes that protect them, a white blood cell test or test for antibodies will be negative. Fiinally a red blood cell test showed an active infection.

I wish I could say everything was better, but she still suffers some after-effects. But the horrible symptoms, at least, were resolved with antibiotics, anti-enzymatics, and several other treatments. It's still a road we're on.

4 moms found this helpful


answers from Washington DC on

Do you or your husband have access to an EAP program through your employers? (EAP= Employee Assistance Program). They will research this kind of stuff for you, and report back to you a list of Lyme Disease doctors that accept your insurance. Good luck. It does sound like Lymes to me. I had a friend in middle school that went through a terrible ordeal for years with undiagnosed Lymes. I believe she was finally properly treated at Johns Hopkins in Baltimore.

4 moms found this helpful


answers from New York on

Start with your health care plan. Then the local hospitals, then Google.

Feel better.

2 moms found this helpful


answers from Jacksonville on

I would check with Mayo Clinic or Shands, both are in Jacksonville and
Shands is also in Gainesville. There are research clinics in Jacksonville and Daytona Beach who do various studies on conditions and medicines to
treat them. You could contact them to get on the list for upcoming research
studies. There is also a LymeDiseaseAssociation.org that has a large
volume of information and you could ask them for a Florida contact or
medical facility in your area. Good Luck

1 mom found this helpful


answers from Chicago on

The University of Wisconsin in Madison, WI has a few Lyme's researchers who see patients. You might want to check with them. The one doctor whose name I knew that was GREAT in this field passed away recently, but they should have a few others.

1 mom found this helpful


answers from New York on

Here on Long Island (suburban area of NYC) lyme disease is not uncommon. there are alot of deer around who carry the ticks who carry lyme disease. After such a long period of time it is tough to diagnose but it sounds like lyme disease to me. It can be treated and your quality of life can be improved. Beyond that I don't have much help or information for you other than encouragement. Find a good doc and begin treatment and therapy. This is NOT in your head (nothing pisses me off more than male doctors dismissing anything women have as being in our heads...)

1 mom found this helpful


answers from Philadelphia on

Just start with the blood test at your Primary doctors office. My daughter was diagnosed with Lyme by her pediatrician.



answers from New York on

Google Lyme Literate Doctors. You'll find a lot of references. It's a very tricky disease to diagnose. Sounds like you really may be suffering from it. The typical blood test your primary will give you doesn't always catch it. It was explained why to me once but I am not good at science so forget. Treatment is not necessarily an IV though. Just heavy heavy oral antibiotics for something like 6 months to a year. You could start with your primary. You might get lucky and it's diagnosed that way. Otherwise, I would just search the articles written by LLMD's and choose one... Likely if they're published, they are pretty good. There are homeopathic remedies too that maybe you could start on until you can get to a doctor.

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