I am new to the group. It all started in August 05, hand and feet pain and stiffness. Went to the doctor, told it was a virus. About one month later starting having pins and needles in feet and hands with numbness. A couple of months after that lower back and buttock pain, tingling numbness. Now I am having tingling in my whole back, arms and legs. I am also having visual changes over the last week, spots and glares. As one doctor put it I have had the million dollar work up, brain MRI's, cervical MRI's, spine MRI's, blood tests by a rheumatologist and neurologist, EMG, CT scan of pelvic and abdomen....all tests have been normal. I have been tested twice for Lyme both times negative. I have been told I could have fibromyalgia, on examination I had the tender points, I have carpal tunnel on examination but not on EMG study. After reading so much on lyme disease, I am nervous it might be what this is. My dog had antibodies to lyme disease a couple of years ago. The vet said he was exposed. He never had symptoms of it and still does not. Can you have lyme disease and have it not show up on blood work, if so how do you know if you have it and receive treatment for it. My doctor tells me I do not have it because of blood test results. Maybe a need to see a lyme specialist. If you know of any in the Boston area please let me know.
Posted by pattilynn (Member # 8065) on :
Hi,
You may want to post this in medical. You'll get more replies. Keep reading here you'll learn alot.
Also read Treepatrol's newbie links.
I have the exact same symptoms you describe, including the butt cheek pain. I've also seen 3 neuro's, had entire spine and brain MRI's twice, EMG, evoked potentials, everything completely normal.
The third neuro said fibro.
There are many people here with great amounts of knowledge to help you.
I also had lyme test done by LabCorp. Negative. I'm waiting for results from Igenex.
My llmd said chances of having it, even with a negative test through Igenex is about 50%.
Patti
Posted by kxpetre (Member # 8928) on :
Thanks for the reply. I will try the medical part. Good luck. Will you go on treatment even with a negative result?
Posted by pattilynn (Member # 8065) on :
You might also want to post under seeking a doctor.
The regular labs like Quest, LabCorp are totally unreliable. The only accurate ones are Igenex, MDL and I think Stonybrook. Others will help you with this. I'm no expert.
I am waiting for my results from Igenex. I will take treatment if negative. I'm starting the med tomorrow. I'm pretty sick and no one can tell me why.
One sign of lyme is that everything comes back "normal".
I was treated for similar symptoms back in the early 90's and recovered.
Good luck
Patti
Posted by kxpetre (Member # 8928) on :
I think my doctors office uses Quest. How do you control which lab your blood work goes to. If you don't mind talking about them, what other symptoms do you have? Are you starting antibiotics?
Posted by pattilynn (Member # 8065) on :
I sent you a pm.
Posted by BostonLyme2005 (Member # 7680) on :
Hi Kx,
I am in Boston. The cape is well known for Lyme Dosease....
You ahve to get tested at Igenex...If your Dr. wont use them, get a new Dr. That easy!
You should see Dr. D. in Plymouth. I will send you a PM with the info to contact him.
Start Tetracycline 1500 mg's a day....You dont need any bands on a test to be +, but if you have some of the right ones, it is Lyme...