Can anyone tell me if they have any muscle wasting from Lyme i.e. throat, neck or hands? I’ve posted previously my other symptoms if you would like to read those as well before responding.
I’m so sorry to hear you are dealing with the same issues…please don’t take this wrong but I’m relieved to find I’m not alone. My doctors looks at me like I’m crazy, I truly believe they think I’m in need I’m mental help. Yesterday I saw an ALS specialist @ GWH in DC and she said she didn’t think I had Lyme because it didn’t show up 3 years ago in a spinal tap…my symptoms started 07 and I have progressively gotten worst. I can’t take any antibiotics as I’m allergic to ALL and I don’t mean they just make me sick. Mine also affects my life side more than my right, I have muscle weakness, atrophy, twitching, sometimes I feel this vibrations in my body, I had a bells palsy on the left side of my face at least that is what they are calling it, that is most noticeable to me, serious throat issues and shortness of breath…I go for another EMG and Nerve conduction study tomorrow with the ALS doctor. Obviously I want it to be clean and good…but very frustrated no one can tell me what is wrong, I have a list of LLMD in my area…I think it’s time to call and get an appointment and see if I can’t help myself.
Can you tell me do you see improvement with your muscle weakness, I know you said it’s better when you’re on your meds but do you notice if you are regaining strength in any of those areas that have lose muscle?
I too have been told no ALS, MS or MG.
Please let me know how your appointment goes I’m really interested in what your doctor says about you returning to some form of weight bearing exercise.
I am defiantly going to look into this, I was born in New Jersey but grew up here in Northern VA…I think I know I was bit 8-9 years ago I found a tick on me 24 hrs after being out in the woods…and we believe I was possibly infected again last spring, since I can’t take antibiotics my PCP has not treated me. I’m scared to death, I also have two girls 13 and 15 and I stress daily about what is going to happen to me. I cried Lyme 3 years ago and no one would hear me out, maybe I wouldn’t be so bad off today?! But who knows. I do know that I’ve been told over and over again it’s none of the classic nuero muscular diseases it mimics.
Can my PCP doctor order those test prior to seeing a LLMD doctor? I know it take a while to get in to see one.
I’m going to check out that movie for sure.
You are the closes case to mine I have seen/heard of yet…super happy you responded, I finally have hope that as answer is out there for me.
You say if you die from this, does your LLMD give you reason to think that this will not be managed or treatable to live as close to a normal life for a good long time? I thought and maybe my search is not correct…I thought this disease was treatable and I haven’t heard of any deaths from it.
I haven't been able to exercise in years as if makes it worst do you expierence anything like this?
I so agree though, if you don’t stand up and fight for your life who will!
Post Edited (Wiseguy) : 2/28/2012 8:10:15 AM (GMT-7)