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Bella49
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Date Joined Jan 2010
Total Posts : 10
   Posted 1/27/2010 2:20 PM (GMT -6)   
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...
 

bablymers
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Date Joined Oct 2006
Total Posts : 1458
   Posted 1/28/2010 9:09 PM (GMT -6)   
Hi Bella, and Welcome to the forum!

I am sorry you are suffering from this illness and all it's complications. My daughter and I both have lyme, babesia, bartonella, etc. etc. so we can relate! I have had rapid heart beats and "flip/flops" but the Toprol med really helps me control it (prescription). My daughter has had symptoms too, but I think they come and go.

It's great to hear your good news of improvement! I hope you continue to get better every day and have a swift and complete recovery!

Blessings to you too, bablymers mom

Cheezhead
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Date Joined May 2007
Total Posts : 517
   Posted 1/28/2010 9:27 PM (GMT -6)   
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

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 1/28/2010 11:34 PM (GMT -6)   
Hi Bella,

I just read one of your posts in another thread, that you live in the state of WA. The world famous Dr. K is in your state. Is he your doctor by chance? If he is, I would love for you to email me with info about him. Our llmd knows him and suggested to my very sick friend that she should try to see him because he uses many alternative therapies that might help her. The trip from CA to WA would be hard for her to make. Just wondered if it would be worth the effort. Thanks for any info you might have.

Best wishes, bablylmers mom

Cheezhead
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Date Joined May 2007
Total Posts : 517
   Posted 1/29/2010 8:46 AM (GMT -6)   
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.

Bella49
New Member


Date Joined Jan 2010
Total Posts : 10
   Posted 1/29/2010 6:01 PM (GMT -6)   
Hi babylmers,
 
I don't know who Dr. K is, but I am seeing Dr. Martin Ross in Seattle.  He uses pharmacueticals and also naturopathy.  He was recommended to me by a neighbor of my niece who speaks very highly orf him.  I have spoken to some of the other patients in his waiting room and many of them are from other states because he is so highly thought of.  He has a web site... just google Dr. Martin Ross, Seattle. 
 
I just had more lab work done this morning to check for die off of the babecia.  Will have results on my next viasit on the 10th.
I am hoping some more definitive answers will be found.
 
Bella49
 

bablymers
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Date Joined Oct 2006
Total Posts : 1458
   Posted 1/29/2010 7:49 PM (GMT -6)   
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

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 1/30/2010 10:26 AM (GMT -6)   
uhmmmm, we are not supposed to be using drs. names on the forum - please use pm's for that. No one wants to bring unwanted attention to our docs who are brave enough to actually learn how to best help us Lymies!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Bella49
New Member


Date Joined Jan 2010
Total Posts : 10
   Posted 1/30/2010 6:34 PM (GMT -6)   
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
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/31/2010 8:02 PM (GMT -6)   
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.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/31/2010 8:35 PM (GMT -6)   
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
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/31/2010 8:42 PM (GMT -6)   
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.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/31/2010 8:52 PM (GMT -6)   
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
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/31/2010 9:06 PM (GMT -6)   
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.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/31/2010 9:20 PM (GMT -6)   
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

annabell7
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/31/2010 9:33 PM (GMT -6)   
It does help thanks and I'm having a good day so I actually understood that :) I got several names from them already and will see what I can get for appt tomorrow. I feel like I have wasted so much time blindly accepting what my docs said. I even asked my nero if my symptoms could be related to Lyme and she said no. Just no. She ruled out MS and MG and apparently lyme b/c my last test was neg.

Cant_Take_IT_No_More
New Member


Date Joined Jan 2010
Total Posts : 4
   Posted 1/31/2010 9:43 PM (GMT -6)   
AWE GOD BLESS YOU! ILL PRAY FOR YOU STILL!!!!!!

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/31/2010 9:44 PM (GMT -6)   
annabell7 said...
It does help thanks and I'm having a good day so I actually understood that :) I got several names from them already and will see what I can get for appt tomorrow. I feel like I have wasted so much time blindly accepting what my docs said. I even asked my nero if my symptoms could be related to Lyme and she said no. Just no. She ruled out MS and MG and apparently lyme b/c my last test was neg.


With this disease you have to be your own advocate, and keep searching until you find some answers. Lyme disease is supposed to be a clinical diagnosis per CDC. The blood tests for Lyme are very inaccurate. Follow your heart, if you think Lyme could be the cause of your ills, it probably is.

annabell7
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/31/2010 9:54 PM (GMT -6)   
Thanks I will be my own advocate. I have to be.
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