A few years later, I developed severe fibromyalgia symptoms with full-body pain, fatigue, migraine, brain fog, Raynaud's, etc. A couple of years after that, I developed different types of neuropathy which are rapidly taking over my body. I've also developed many other problems like severe arthritis in my neck, back and knees, and depression and anxiety.

I'd like to know what I'm dealing with by my neurologist has not been able to find the cause. I asked for a Lyme disease test but it came back negative. I've read in many places that this test, especially so many years after the bite, is very often incorrect. I tried to get him to give me something more accurate and he wouldn't. He said his test would show something. Based on everything I've read, I disagree.

I would like an accurate test so that I know if it's Lyme. It's the only thing that makes sense. I have almost all of the symptoms and this hit me while I was having a happy life, was at the top of my game with work and happy with family.

Please, I would like to know what tests might show Lyme disease after many years, and then how to treat it at this point. I will travel to a place if necessary, as long as this is their specialty. Please, if you can help me I would really appreciate it!

erleichda

Post edited by: erleichda, at: 09/11/2007 10:52

Go see [edited – please keep Lyme physician information confidential] in New York...He will help you. Yes, there are very specific tests and only certain labs and facilities are able to correctly perform these tests....he will help. He saved my son's life.

Cindy

Post edited by: roy, at: 09/11/2007 15:03

I'd get in touch with Igenex to find out what you need to get tested, and if you need a Dr's orders, track down a Lyme specialist in your area and ask them to order a set of test. Your health insurance probably won't cover it, and unfortunately, that is probably only the beginning of what your health insurance won't cover. Feel free to send me a note if you have any other questions that I might be able to help with.

Good luck!

We live in FLorida and have a MD in New York. No - you don't have to spend alot of time there. We see him depending on what is going on....But really if you think about it the same is true for a MD in your own city. You go see him when you need to and maybe with the MD being so far away we utlize the phone more but we have experienced greater care and greater results with a MD who specializes in treating patients with Lyme.

Don't let that be the deciding factor...Most MD's will put you through a ton of other tests then get to the Lyme tests.......think of it that way and you are saving a ton of money....I pray it all comes back negative.....................and you get better fast.

Skip the middle man and go directly to the source of help...a Lyme literate doc.....

Cindy in sunny Florida.......

I've already gone through tons of other tests. I went to Mayo four years ago and was diagnosed with fibro/CFS. Since then, I've had seizures, abnormalities in my brain, severe arthritis in my knees, neck and back, severe worsening of eyesight, Raynaud's, migraines, two types of neuropathy and muscle atrophy, etc.etc. I have already spent tons of money so I have to consider money, too. I have a family, I can't work and we could lose everything. I have to make the right decision.

Also, I want the Lyme tests to be positive, don't I? Negative would mean that there is no Lyme, or am I wrong about that? I need to find out what is causing all of this and if the tests show that I have Lyme, I can start getting treated - and I will know why I have all of these issues. So please let me know - does positive or negative mean I have Lyme?

Thanks for your help.

Lori

My son has experienced everything you mentioned. Seizures - yes! All related to Lymes! Scarlett was right when she said that I was hoping for negative in the fact that - I don't want anyone to have this disease BUT

I will send you a link that explains in very specific detail how the IgM and IgG test work...what bands mean what and what bands you nust have positive to be considered positive for Lymes....please understand that my son didn't have every band necessary for a positive Lyme test but the insurance agreed to 6 months of IV therapy anyway...so there is alot a Lyme Lit doc can do for you regarding documenting your diagnosis besides a positive lyme test......I understand you have spent a ton of money ..I am faced with those same "medical " personnel who every time we get sent to the ER for seizure etc...they try to take us in every other direction besides Lyme.....Stick to your guns. I have a family doc here in FL for those times we need a doc close but every regiment is prescribed by [edited – please keep Lyme physician information confidential]....We just finished 12 weeks of bicillin shots twice a week - prescribed by [edited – please keep Lyme physician information confidential] administered by our family MD here in Fl... Find a local doc willing to talk with [edited – please keep Lyme physician information confidential] and help with your regiment -I promise you are not making a mistake in visiting [edited – please keep Lyme physician information confidential]...I understand what you have been thru...we have seen approx. 20 different docs here in Jax before we got to [edited – please keep Lyme physician information confidential]..If we hadn't found [edited – please keep Lyme physician information confidential] my son would not be here. He was having seizures daily....and everything esle you mentioned and a couple more.. GODSPEED!!!!will send you the link in the next message - ran out of room... CIndy

Post edited by: roy, at: 09/11/2007 15:05

Here is a link that really helped me explaining the tests etc.

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=042077#000000

You are not alone and everyone here will help you get the info you need to make a wise choice.........

Cindy