That is both a terrible and and an inspiring account of your encounter with Lyme. Well said, and thank you for posting that.
And welcome to MedHelp Lyme -- I see you're a new joiner.
I my self was diagnosed with MS in 2010 after having issue with speech and balance ( thinking stroke)..went through all kinds of testing(to many to list)..long story short they all said MS. but the funny thing is you need to meet certain things in order to be branded in the MS box and although my symptoms where MS like I did not meet the main ones. (98% of MS patients all need to have a positive visual evoking text..(both of mine negative) . plus my inner gut was just saying something wasn't adding up. I wanted other testing to be done. Medical Dr. just kept saying .(no need you have MS). well guess what.
THEY WHERE WRONG...after 2 years of getting worse and still refusing MS meds. I got a horrible pain in my stomach for several weeks I went to the Urgent Care Dr. that I trusted and who knew me well..He gave me a bacterial antibiotic for my intestines...after 4 days I had a reaction now known as a (Herx) then everything improved...and I mean everything...when this was reported...I was again tested for Lyme....yep the P23 showed its ugly little head... So the answer is trust your gut. If I had not been pro-active in my stand on wanting more testing I would still be in the MS box with no real help being done. and the MS medications have been reported as being hurtful to Lyme patients not helpful. If you can find a doctor willing to give you a bacterial antibiotic to try, I would give it a go...if you herx then you know its Lyme and not MS....(MS does not react to bacterial antibiotics.
I was misdiagnosed with MS and I hate to think how many people really have Lyme and think they have MS.
I presume that because you're on MS meds, you were diagnosed with MS. Did you have Lyme Disease before that, and were you treated and told you were cured? It is not uncommon for Lyme patients to be misdiagnosed with MS. The medications for MS very often make a Lyme patient worse, as they interact with the immune system in a way that doesn't help it fight an infection.
Yes, Lyme Disease can be persistent. It is a great controversy in medicine today. The ivory tower researchers and their CDC cohorts have turned a blind eye and ear to patient cries and continue to insist that a month of abx always cures Lyme, and ongoing symptoms must either be something else, or an immune disorder they call "post Lyme treatment syndrome". They ignore extensive evidence showing that long term antibiotics makes these patients better. I shudder to think how many people out there think they have MS, but really have Lyme instead.
Can you give us more info about yourself? Tell us your story....
Can you give us more background?