Hello, I was dxn with Lyme via Igenex western blot this past Feb 2012. I was also dxn with MS in March of 2009 with MRI with about 6 lesions and Ogliconal bands on LP. lesions located in periventricular area. During initial MS work up they did an Elisa test for Lyme which turned out negative.
The neuro told me "since elisa is negative I see no reason to do a western blot". And dxn 'probable ms' in my chart. I started on Copaxone injections in 2009 resigned to the fate of this MS.
The reason I went in, in the first place was excruciating neck pains, moderate headaches, dizziness, fatigue, muscle pain in shoulders and neck, muscle weakness in right hand and right leg and insomnia was enough to drive a person mad, feelings of being raging hot one minute and freezing the next, cold hands and feet, itchy bottoms of feet with burning, brain fogginess.
Copaxone Injections made me SO sick, every side effect of the medication and then some. At one point my groin lymph nodes were the size of small golf balls, I was dizzy weak, off balance and nauseated, I stopped the injections and started to feel a lot better. The thought of Lyme never left (I lived in the Pacific Northwest during ten years of my life and currently live in North Dakota where I have been bitten by ticks too many times to count. Not sure if I was bitten in Washington state or Vancouver as well by tick, but do remember a curious red rash on my leg that we put off as maybe a spider bit when I was 12).
I continued to educate myself about Lyme after 2009 ms dxn. I learned that MS and Lyme are commonly confused/misdiagnosed. Fast forward to August 2012 where I ran into a old friend of mine in eastern ND and she told me of a LLND and LLMD a few hours to the East of me in Minnesota.
I took a leap of faith and made an appointment. I described my symptoms and concerns. He ordered a WB to be sent to Igenex and 2 wks later results came with negative Igm and positive Igg for borrelia burgdorferi and CD57 of 87.
LLND started me on Lauricidin (helped my fatigue and energy but cause major hot/cold flashes herx?), Inflamasyn, Liver cleanse, garlic, and black Spanish radish. Last month I saw the LLMD who prescribed me Minocycline 100mg once per day. I am 2 1/2 weeks into the Mino while continuing with my herbals as well.
Since starting the mino I have literally felt like I have been hit by a truck, muscles sore, tired, neck pain that radiates to back of my head which feels like its in a vice. This past Sunday I woke up with left sided numbness in my foot and hand, cheek. My jaw is clenched and painful on the left side as well, and my left hand is trying to clench up on me too especially pinky finger and ring finger. My left leg is slower and almost 'dragging' I have to make a conscious effort to track up my gait when walking. I have also lost my balance and fallen a few times in the past few days. I am scared.
Are these common 'herx' symptoms of Lyme, or am I dealing with my MS? I am so confused, which way do I go, I have put a call into my Lyme doctor and waiting to hear back. Have not called my neuro as he has done nothing for me in past four years except prescribe me noxious medication.
I live in a very rural area of North Dakota, so there are no support groups for Lyme here that I am aware of. Yet, I know lyme is here, according to dept of health website for north Dakota we have had 47 reported confirmed cases of Lyme in our small little state.
This board had been a Godsend to me and. everyone is so kind, just looking again for ideas, and support. ..
Anyone out there in a similar MS/Lyme struggle unsure of which way to go? I do lean towards that it is Lyme more so than MS and feel my story and symptoms 'jive' with Lyme. But I am in the middle of either a giant herx or their is more going on. But still scared of the MS since I had lesions on my brain, and positive CSF for ogliconal bands.
Is what I am experiencing right now sound like just a really bad herx reaction or more?
Whew, took me an hour to type this using mostly one hand, wow I need to go back to bed LOL!
Thanks for reading this loooong drawn out post, and thank you in advance for any input or outlook!