My story/LLMD in NY/CT

I am 25 years old. Since the age of three my joints have been swollen and red and flaring up. I've had horrible stomach issues, constant sinus infections. In and out of the hospital not knowing what was wrong. Elevated white blood count off the chart. Just all weird crazy symptoms which never made sense. I use to play in woods in CT a lot when i was little. Anyway the past six months have been the worst experience in my life. It started with this anxiety out of nowhere and for no reason. Then came the crying spells, again for no reason. My head constantly hurting, not a headache, but just constant pain. Fatigue, can barely get up in mornings and be productive.These persisted for about three months. Then one morning I woke up and couldn't walk, i felt almost paralyzed,felt like I had the flu times 100000. Sore, achy, just didn't know what was wrong. My mom rushed me to the hospital they said I had arthritis. As a twelve year old I was diagnosed with what they thought was JRArthritis. So I went to a specialist and he said I think you have lyme, this is def not arthritis. SO I went to see a lyme specialist and he ran a bunch of test all which came back negative but in the mean time based on my symptoms put me on antibiotics. The first two weeks was torture, my symptoms got five times worse, and it was just unbearable. Now its almost four weeks later and i'm starting to regain my energy, and the aches have subsided at this moment.

I was wondering if anyone else had tested negative but still was treated for it. And also if anyone had any LLMD recommendations for the NY/CT area. Thank you all for listening. No one really understands what this feels like when i describe it.

Post Edited By Moderator (borderlyme) : 7/12/2012 9:59:04 PM (GMT-6)

OMG Melissa, I get incredibly frustrated when I hear of people going through what you are going thru. Unfortunately, lyme is just so controversial and new. Its just not the disease to get because you do not get the proper respect or treatment you deserve.

That being said, yes it is absolutely possible to continually test negative. (I just read somewhere the many reasons why you can test negative to lyme so I will try and find and post it here). I myself went 4 years undiagnosed because my test was negative despite a significant band showing up. DO YOU HAVE A COPY OF YOUR LABS?? Thats the first step. Had a gotten a copy when I was tested, I would have researched and found what I know now.

Anyway, lyme testing was created by the CDC for surveillance purposes. The CDC itself says that lyme must be a clinical diagnosis. Bizarre right?!

With your symptoms, I strongly recommend finding an LLMD. Where are you located? This forum was truly a lifesave for me when I had nowhere else to turn. I hope we can be help to you.

Hi bebeMelissa - I changed the title of your post in hopes that it'll help you get more recommendations.

Your symptoms seem to indicate bartonella co-infection as well as lyme - I'd look into that a bit if you can. I've been sick since a pretty young age as well, and I can say that whether it's lyme or something else, being sick that long has a major impact on your body. If you haven't yet, I'd take a look at the "new to lyme" thread - there's a lot of great information there, including info on detoxing which is really helpful, especially while on antibiotics. Also, any healthy lifestyle changes you can make will really add up to help - your body's working to get all of the toxic junk out, so the less you put back in, the better off you are, you know? It's pretty common for people to get worse before they get better while on antibiotics - you just need to support your body in its efforts to heal (which is easier said than done, I know).

I know how it feels to feel like no one understands - it really is hard to explain, but we get it. For whatever reason, a lot of us seem to either get infected with something, or relapse with episodes of anxiety out of nowhere accompanied with that hit-by-a-bus flu feeling - you're not alone!

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
[email protected]

If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm 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 will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html