Hi I am not bothered about the MS diagnosis weirdly enough. Its on the back boiler for now anyway, as we need to address the lymes and viruses.
NOW if we address the lymes and viruses and the B12 and I recover really well in the next couple of years, we can then probably through out the MS label.
The MS label really and honestly and truly is not my concern lol. I can live with MS but I cant live with the devistation that sneeky lymes can do to me.
I am just waiting for this letter then i can start to attack.xxx
The friend does have Lyme, confirmed.
I am so sorry you are so miserable. I know what it feels like when you just want to withdraw from everyone and everything and hole up in a dark, quiet room. Be encouraged that there are better days ahead. It won't happen immediately, but it will get better. I am amazed at the things I could do this week that I couldn't have even considered last summer. Hang in there!!
One thing that has helped me is a "sleep" medication the hospital neuro gave me. It is nortriptyline, and is actually an antidepressant. It really does help me sleep, and when I tried to cut back the dosage, I felt crummy. That is when I realized that it was also helping with my Lyme induced depression. I am so grateful for this med for both benefits. I encourage you to talk to your doctor about it. Having a bad case of long term Lyme + coinfection is indeed depressing!
ummmm, it *could be* MS that your friend has ... but until Lyme has been ruled out by a Lyme specialist, I would withhold judgment about it not being Lyme. Given the spread of Lyme across the country and indeed around the world, it will at some point (if not already) exceed the incidence of MS ... but the neuros haven't twigged to that yet.
No worries. I can't remember anything.
I don't want to sound like a broken record but Dr James Scaller, who has written books has said if you have Lyme you are more than likely going to be told you have MS. I have been through it as well as many others I know. Last night my BFF called me from VA and said a girl she works with has Lyme, she started saying she went to a neurologist....I interrupted her and said, she took an MRI and she was told she has MS. Bingo. My BFF told her to come on this site so we can tell her it's not MS. My purpose of being so passionate about it is to prevent this misdiagnoses for other people since it is a very scary thing to go through. I am lucky enough to know or talk with some well known LLMD 's and they all say the same things.
Now you take this info and keep it tucked in mind as you proceed on your journey. I truly wish you the best.
Hi thanks for the comments, actually a good idea about tackling the NHS over the diagnosis of Ehrlichia and EBV. I am just waiting for my copy letter to my NHS doctor from my private doctor who is writing to her to explain all that is going on etc, then i see my NHS doctor to talk about treatment for lymes and the EBV and the B12.
I feel a bit calmer now having a little better day today. I keep having horrible days where my head just buzzes so loud i cant think straight and my legs burning all the time is wearing me out.
But i know now i am on the right road, and hopefully if I approach it right i will get better.
IF it comes down to money then so be it, i have some savings, and i would rather use those to get half way well, then sit on this blooming recliner for the rest of my sorry life.
I was talking to someone i know today who has MS and he was telling me he has just enjoyed 2 weeks in Portugal, and I am thinking why cant i do that lol.
Why cant I?
I am so ill right now just going out on my mobility scooter to take Lucy my dog for a quick walk makes me hurt and my head buzz lol.
I feel that i should just sit in a dark room and wait for god or something right now, never mind jet set off to portugal for a holiday lol, now that would be great.
Thanks agian for caring so much about me i do appreciate it, i am sorry i cause so much confusion with my posts but anyone who has MS or Lymes knows how bad memory and thinking can be screwed up lol, well that is my excuse anyway. xx