Thanks for everyone's input

Hello again,

It is great to finally find some people that can relate.  Some of my friends are telling me to "just get over it", because you just had a stroke and that is it.  Anyone else out there have atrial fib from this disease? 

Lyme doc also suspects babecia.  Anyone else with this?

I see the  lyme doc next week and he will be reviewing my latest lab work to see if it shows die off of the babecia. 

Good luck to everyone out there with this horrible disease and may God bless and cure everyone.  I iknow I wouldn't be here today if it weren't for prayer. The hospital team told my family that I had only a 50% chance of living and they are now amazed at my recovery.  I was really fortunate it didn't affect my speech or leave me in a wheel chair.

GOD BLESS...

 

Hi Bella49,
It sounds like you have a good LLMD that is covering the co infections also. Wow I can not believe a team of doctors at the hospital only gave you a 50% chance of living....when will the mainstream medical field wake up?? If you get the chance to see them again, you need to tell them to watch the film Under our skin!!

We are happy to have you here, and I'm looking forward to hearing about your recovery.

best wishes

I know how you feel JunkYardWilly....My wife made the mistake of uttering this phrase once.....I thought my head was going to blow up!! After a leangthy outburst, I said to her....would you tell a woman with breast cancer to "get over it"

They have no idea just has painfull this disease is.

Hi Bella49,

Thanks for the info. Sounds like you have a good doc and I am happy for you!

The doctor I was referring to is Dr. Dietrich Klinghardt. He is in the film "Under Our Skin" and if you "google" him you will find things about him. He also has a website and teaches his methods to other practitioners around the world besides having a private practice. Busy man! He is both in the USA (WA and CO ) and has institutes in Germany and the UK, I think.

Best wishes, bablymers mom

Sorry,

I guess I should have looked into the forum rules more thoroughly.  I ceertaivly don't want to upset the apple cart. Thanks for your input.

Bella49

annabell7 said...
Hi all, newbie here. Limited to my tiny phone so excuse any typos. Can anyone tell me how to find a good LLMD in the boston area? about two years ago I started having random symptoms and have not been well since. I was tested several times for lyme ...first was negative..second was positive - bands 41&23...third was negative Elsa. My neuro says I have bengin twitching not related to lyme. My primary found me interesting for about 3 mounths before she obviously gave up on me. I lost complete faith in most doctor. I have have seen more docs in the last 2 years then the 33 years before that. If someone can point me in the right direction it would be much appreciated.

Hi annabell7,
Welcome to Healingwell!! Sorry you have not been feeling well. Great to have you here.
To find LLMD doctor referrals go to ilads.org you can also find more information at turnthecorner.org and lymediseaseassociation.org

Best wishes

annabell7 said...
Hi again. I found the link to LLMDs. Should I be worried if the doc I have an appointment with in 4 Mounths isn't on the referal list? I don't want to wait 4 months to see someone who isn't going to get it. He is in a "Lyme clinic" within a major Boston hospital.

The difference between a "true" LLMD and one that calls them self a LLMD is if they treat using ILADS guidelines. Is your doctor at the Boston hospital an ID doctor? Some ID doctors are LLMD's, however most follow IDSA guidelines and only treat with short term ABX. Chances are if you have been infected for over two years now, you may need long term treatment. Unless your doctor believes in chronic Lyme disease, he/she will not treat you longer than a few weeks.

Best wishes

annabell7 said...
Thanks. I've had the unpleasant experience of an ID who is not Lyme litterate. My primary refered me to this Lyme clinic but the doc is a rumatolagist. SureI have the stiff and painful joints but will a R also help with everything else? Or are we expected to find LL ENTS, Neuros, etc.. Thanks for your quick reply by the way! I also emailed turnthecorner.

If it was me, I would see what referrals I receive from ILADS, and turn the corner foundation. If I could schedule an appointment with a LLMD prior to the appointment with the Boston doctor I would see the LLMD and if your comfortable with him/her you could cancel your Boston appointment. If your LLMD appointment is after your Boston appointment I would go to the Boston appointment first and then be SURE to see the LLMD later. I hope I didn't confuse you :)

While you are waiting for your appointment please read as much as possible about this disease. There is many places on the web to find the information you need. You could also go to your public library and look for Cure Unknown by Pamela Weintraub, or The Bakers dozen & the lunatic fringe by P.J. Langhoff both these books have a wealth of information.

Hope this helps

AWE GOD BLESS YOU! ILL PRAY FOR YOU STILL!!!!!!

Thanks I will be my own advocate. I have to be.