Lyme Disease Support Group

Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.

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PaulaLB 05/09/2010

Hi Everyone,

I just found out Friday that I have tested positive for Lyme Disease. I am now wondering if I was misdiagnosed with CFS and have had Lyme all this time. I'm not sure if you can have both. My naturopath requested I get tested for Lyme, he does it through IgeneX Inc. I did the IgG and IgM Western Blot and my IgM came back positive. I am going to see an infectious disease doctor the end of June and my naturopath is going to start his Lyme treatment around the same time.

I know Lyme can be difficult to diagnose but the doctor at IgeneX said that he is 96% confident that I have Lyme. I don't recall being bitten by a tick nor did I have a rash, so I was very surprised when I found out.

I have heard the treatment can be very hard on your system, so I'm a little overwhelmed right now. I've done some research but need to learn more. But the good news is that there is a treatment. Do people make a full recovery after the treatment?

Thriver 05/09/2010

I'm sorry you have Lyme, but kudos on your diagnosis. It can be very hard to get a positive test, which hinders a lot of people from getting the right treatment.
Since the endof June is several weeks away, I would not wait to start treatment until then. All that time the disease will be progressing. Is the infectious disease Dr. a Lyme Literate MD? I think not, as an LLMD wouldn't ask you to wait weeks to begin treatment. If not, get thee to an LLMD. Too many Drs don't know how to treat Lyme. It's different from other diseases.
People do recover fully, but it is key to get treatment swiftly and from someone who knows what they are doing. Also, be prepared to spend lots of money.
Good luck!

slrow 05/09/2010

Yes it is true that it could have been Lyme all the time. I was treated for so many other things including Fibro and none ever did anything until I went to a LLMD. Then he sent my lab work to Igenex and they finally found it. I have had it all my life and did not find out about it until I was 32. i have been battling it for 9 years almost of treatemtn only treatment free for 1 year inbetween. This is a good place for info and also I would recommend just looking up things on the web. With this disease knowledge is power.
One thing I can say is this is not a cookie cutter disease. I mean by not everyone has the same symptoms or responds to treatment the same way. just as long as you have a good LLMD and this support group you are getting a good start. !! I wish you much luck.

deleted_user 05/10/2010

Welcome to DS! We are sorry for the circumstances that have brought you here, but welcome, nonetheless. You will meet great people, learn a lot, and find that no one understands you better than a fellow Lymie. So, welcome.
Most people do not get the rash, or they may get it on their scalp or somewhere that it is not obvious. It may be tiny -- or, you just never had one. Like Thriver said, congrats on having a diagnosis (dx), b/c so many people never, ever test positive. And it's great that you have an ND to work with.
As to the LLMD, I see an infectious diseases doc who is an LLMD, but he is rare. If you aren't careful you can end up with an ID doctor who is not ever satisfied with the dx and who will not tx the Lyme aggressively. You'll have to see which category your ID doc falls into.
My ID doc has done all kinds of research, is well known for that and his ability to dx difficult to dx diseases -- he believes that CFS is only a set of symptoms, and where there are symptoms, there is a disease. Now you know what is underlying your symptoms -- Lyme.
Let us know how we can help you through this. Just be prepared, it is not a sprint to wellness, it's a marathon.

Thriver 05/13/2010

Laura is right, and the other thing to watch out for is that once a doctor says you don't have Lyme, it is harder to get any relevant treatment form anyone else. Drs, even good ones, are reluctant to expose themselves to legal and insurance hassles that can threaten their practice. So make sure you start out with the right one. Most of them are known to the Lyme community. There is probably a group in your area you can ask for referrals from. Sorry about my grammar :)

PaulaLB 05/14/2010

Thanks alot for all of your comments. The infectious disease doctor I am seeing in Toronto does specialize in Lyme disease. Another member emailed me and mentioned she goes to him and that he is really good. So I feel better about that. Unfortunately, June 24th is the earliest I can see him. I am on the wait list for a cancellation. I'm going to keep on calling every few days to check in though. I am a little worried about the treatment after reading about it but I've gone through something similiar when I did a cleanse/detox for 5 months, the first 2 months were so horrible, I could hardly function. So I guess I'm prepared for it, lucky me :)

Thriver 05/16/2010

Glad to hear that! When my son had to wait 5 days for an appt with the neurologist, she called his other doctor and got him a script for abx in the interim so not time would be lost. It's a thought! But in his case, he was still under 1 year of infection, so I guess it was more urgent that he start prompt treatment.
Good luck and be strong for the herx to come.

deleted_user 05/18/2010

Glad you came here for answers and read all you can about this epidemic and trust no one's opinion, i believe with Lyme you have to be safe than sorry and do all you can to make sure you get the Lyme under control and out of your system.

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