Anyone privously been diagnosed with ALS/MND?

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Buffster
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/20/2008 12:15 PM (GMT -6)   
 
Just wondered as the syptoms are so similar to lyme if anyone here has been told by doctors that they have als/mnd?
 
Thanks

masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 10/20/2008 1:44 PM (GMT -6)   
Yes, my husband was diagnosed with ALS and later tested for Lyme and diagnosed by LLMD. He just started IV Rocephin 4 days ago and we are seeing slight improvement.Have you been tested for Lyme? When did you get ALS dx?

Buffster
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/20/2008 3:09 PM (GMT -6)   

 

Hi Masonsmom,

Thats great to hear, I'm sure you are so relieved that it is not als.

My brother was given a dx of ALS about three and half months ago. We recently got him tested for Lyme with Igenex and the IgM western Blot came back positive so we are looking for a LLMD at the moment (we're in Ireland). The doctors here are not interested in looking into further and just said it looked like a false positive which seems crazy since the symptoms are so similar and they are both based on a clinical diagnosis. Did you have a hard time diagnosing the Lyme and did the doctors that orginally diagnose admit they had made a mistake?


masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 10/20/2008 5:00 PM (GMT -6)   
Yes, we had many problems with getting a correct diagnosis, ten doctors and other diagnosis. The doctor that diagnosed ALS will still not admit a mistake was made. Many of us have the same problem getting diagnosed.And getting our meds covered by insurance as there is such controversy connected with Lyme.Good luck. What symptoms does your brother have?My husband had muscle twitching, and weakness in his right hand, neck stiffness. Bev

Buffster
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/21/2008 2:36 AM (GMT -6)   
Hi Bev,
Thanks for the reply. I'm just learning about all the controversy connected with Lyme now, unbelievable. Can I ask you where you are? We are limited here with doctors to check for any other diagnosis.
My brother has foot drop/muscle weakness in his leg, as well as muscle twitching, cramps and fatique.
Buffster x

masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 10/21/2008 5:24 AM (GMT -6)   
We live in a suburb of Cleveland Ohio. We have only one LLMD in Ohio and he is very new at working with Lyme disease. Most people that I talk to travel to Pennsylvania. NY and Ct. to an LLMD. It makes it difficult. My Father and his family were all born in Armadale Scotland, nice to hear from someone in Ireland. My home e-mail address is edbevmerk@gmail.com if you would like to communicate with me. From what I understand both Lyme and ALS are diagnosed clinically. There are no definitive tests. My husbands WB was a 41 ++ and the two Lyme related bands were IND. I have also talked to another lady on this site who was previously diagnosed with ALS from Florida and she is making progress. I have some info on the connection between the two that I can send you if you like. Take care, Bev

mother natures child
Regular Member


Date Joined Oct 2009
Total Posts : 231
   Posted 11/2/2009 3:59 PM (GMT -6)   
Buffster
There is a book written by a man diagnosed with ALS, and was sent home to die. He treated it with diet and alternative medicine and 14 years later is still going strong! think its called Eric is winning

blessings723
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 11/3/2009 2:28 AM (GMT -6)   
geee i am learning more about this stuff everyday-masonmom would you mind sending me the info on the link between lyme and ALS? how is one supposed to know what they really have?? so far none of my tests show anything but i'm still waiting on my lyme results, thyroid and cd57. what are symptoms of lyme that someone with ALS wouldn't have? Thanks!
I refuse to stay sick! Period. 
 
 


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 11/4/2009 8:33 AM (GMT -6)   
Buffster,  You might want to request a CD57 test, but being that you are from Ireland I don't know if you could have it done.   The only lab that does it correctly is LabCorp.  Even if you have it done here in the states you still have to have it sent overnight express as it has to be received within 24 hours in order for them to run it.  Just a thought, good luck. KO
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009

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