27 Apr 2018
Author
Mia Rankin
Title

ALS SOD1

Body

Hi All,I'm hoping for some assistance if there is any one out there withpersonal experience and informed research it would be very welcome.My wonderful husband is 49 and has been diadnosed with ALS SOD1 . HE look fit and amazing but has constant faculations, cramps and pins and needles. There are 7 neuro who have informed us there is no hope and to 'enjoy the sunsets' I've spent 1000's of hours on the net and research has been to little avail .

Comments

Hi MIA,the possibilty of having an infection is there. You have to find out what is triggering his disease.A good adress is: www.b-c-a.de . It is here in Germany, but it is a good lab ,they know about MS,ALS and infections. sphinx 

 Wheldon CAP May 2008,   52  Tini pulses - stopped Nov.2013- Buhner´s protocol Dec. 2013 till  June 2014 - cpn free Oct. 2014

Yes, since ALS is only genetically triggered in about 10% of cases infection might well be the root cause.  Did the fasciculations etc only start sometime after the tick bite?  You might start with the NAC test: as accurate as any for C pn infection.  Find out about it either in the handbook here or here: http://www.davidwheldon.co.uk/ms-treatment.html .................SarahA Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Mia, Since ALS is so aggressive, you may have to be just as aggressive in treating it.  Normally, we tell people to 'go slow' and ramp up into this treatment.  You may not have that luxury.  Do you have a doctor who's willing to push the envelope to help save your husband?p.s. While I know time is of the essence, please understand that many of our members only check in once a week, or once a month, after they've recovered and gotten on with their lives.  In other words, you might not get responses as quickly as you might wish.  Patience; the long-timers here have set their pages so they see every post that's new (since their last visit).  Anyone with pertinent answers WILL respond, eventually.  Wink

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi