do i have lyme??

[reba30]

i was bit by a tick in may. i did not get a rash. i did have some flu like symptoms a few weeks later. i was tested with the western blot a month later. it was all negative except the igg 39. i chalked it up to a false reading and moved on...then....about a month ago i developed numbness and tingling in my hands,feet,and right side of my face. i went to a neurologist and had an mri which was negative for ms. he retested me for lyme with the western blot. this time....igg 39 is positive and igm 23 is positive. i am a nurse and work with a nurse who is a lyme disease educator. she insists that this means that i have lyme....because of my symptoms and because both of these are "lyme specific".  i showed the results to a dr i work with and he said that i do not have enough bands for it to be lyme...and suggested that it was stress related...

i am very confused...and i admit...this whole thing is making me stressed!   if i have lyme....have i let it go too far? has it now progressed to a bad stage??? how do i treat this....if it is lyme. anybody?????????????????

[Hope75]

Don't be scared, but don't delay in getting an LLMD.  Pay the $$ if you can.  It hurts your budget, but the pain hurts more:)  See if you can get a headstart and get an Igenex Labs Western Blot too.  It will cost over $400, but you'll be reimbursed a portion if you have insurance.  Many LLMDs use the Igenex Lab, I don't know which one you are going to go to, if you do.  Anyway, heed the above comments - regular docs will not know what they are talking about, period.  There are a few exceptions.  

My main symptom for three years was peripheral neuropathy - burning pain, mostly in feet, but in patches all over my body.  It still hurts, not half as bad.  There is treatment and I didn't start until years into this diagnosis.  So, there is hope.  Take care and keep updating us, you are in a great forum here.

Hope

[wonko]

The CDC criteria for a postive western blot requires 5 bands on IgG or 2 bands on IgM.  That is likely why your doctor says that it's not Lyme.  However, many physicians operate outside of the very narrow CDC definition and diagnose and treat Lyme even with less bands on Western blot, espcially if they are higly specific bands.  That is the opinion likely held by your nurse friend.  

You as the patient are stuck in the middle of the strongly polarized opinions surrounding Lyme, and you need to decide how you want to proceed.  One possible route, as mentioned by Amyloo, is to seek out a "Lyme Literate" doctor, or LLMD.  And I agree, you should visit the ILADS website and read more about that option!

Lyme is always still treatable, no matter how late.  It becomes more of an issue of how long, difficult, and successful treatment will be.  It is possible to recover 100% even from late-stage Lyme, so don't give up hope.

I understand your confusion.  You should pick up a copy of Pam Weintraub's book "Cure Unknown," as it explains a lot of the history and current confusion surrounding this disease.  She and her family had it, and she is also a scientific journalist, so the book is both compelling and professionally written.  It's $10 in paperback, or check your library.

Keep us posted, take care, and I hope you keep pursuiing the matter.  Don't let the opinion of 1 doc stop you from questioning what is best for you.

[Amyloo]

The stars above should show the word dot and then the word com.

[Amyloo]

Hi Reba,

My suggestion to you would be to find a Lyme Literate doctor, who can help you sort out what is going on.  If you go to Lymenet ******* there is a section there called "seeking a doctor".  You can also go to the ILADS website (International Lyme and Associated Diseases.) You should be able to get help finding a doctor there as well.  Band 23  and 39 are both specific to Lyme disease, and the IgM antibodies do indicate active infection.  I am not a health care practitioner, I am just going by what you have stated above and my own research.  Don't worry, there is great help available.

It sounds like your MRI didn't show any lesions, which is good, but that one particular thing doesn't rule in or out a disease like MS.  Just FYI.  God bless you.