Old 03-11-2010, 04:03 PM #16 (permalink)
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Default Re: talapanel or Ceftriaxone Stage 3

My 16 week exam went well no change other than cramping baclofin was increased. Fvc went up to 89. Gained a few lbs.

Currently 234 in ceftriaxone trial out of the 600.
4 in the trial where I go so far, 3 have gallstones, 2 are having gallbladders removed to continue the trial. I am the only one so far without major difficulty and showing improvement and being stable at this point.

Judy
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Old 03-14-2010, 05:49 PM #17 (permalink)
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Default Re: talapanel or Ceftriaxone Stage 3

Wow Judy that is great news for you! So, when you say improvement, what has your improvement been?
Hugs, Kari
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Old 03-14-2010, 10:42 PM #18 (permalink)
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Default Re: talapanel or Ceftriaxone Stage 3

Hi Kari,
What is most noticeable about me is my left foot drop and my speech, but they were bad already before the trial. I can do things now that I struggled with 4 months ago opening a bottle, mashing potatoes, picking up a needle, opening a pop can top, tying my shoe's. My shoulder is the biggest improvement it was on it's way to being frozen, being painful to move, poor range of motion. It has improved sooo much no more sleepless nights or pain that is constant. The doctor reports that my progression is very minimal and when they did my fvc on thursday the do it 3x here are my scores 1x 75 2ndiagnosed 80 3rdiagnosed was 85 the highest I ever had. I really hope this is related to the ceftriaxone and ursodiol combination.
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Old 03-15-2010, 12:05 AM #19 (permalink)
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Default Re: talapanel or Ceftriaxone Stage 3

Wow Judy, I cannot imagine why it wouldnt be from the ceftriaxone and ursodiol trial. This is all good news! To bad so many have the problems with the gallbladder and the stones and all. I really want to thank you for going out there and trying something new and letting us all know how you are doing girl! It means so much to so many people, and I am glad that it seems to be paying off for ya. Oh yes, I talked to my dad about the "cords" supplement you told me about, and he just went and got some yesterday. Hopefully that will give him some much needed energy. Thanks again for EVERYTHING!
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Old 03-15-2010, 12:13 AM #20 (permalink)
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Default Re: talapanel or Ceftriaxone Stage 3

Judy,
Thank you for sharing this information.--JK
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Old 03-31-2010, 02:49 PM #21 (permalink)
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Default Re: talapanel or Ceftriaxone Stage 3

Quote:
Originally Posted by SavoringLife View Post
Thanks, Good luck. Keep us posted. I will keep posted my progress once I get in a trial. The only possible reason I personally would choose ceftriaxone is because a couple of Doctors (possible quacks) and several people have suggested Lyme. (a long story). I had one positive lyme test (IGeneX). This would kind of kill two birds with one stone as ceftriaxone is an antibiotic used to cure lyme. However, I have read over and over about false lyme hope, have tried a month of cefuroxime (an oral antibiotic), and have ruled out lyme. I have been refered to Johns Hopins ALS clinic and am working on getting an appt.
I realize this post is old and the person who posted it may not see my response. But my wife who is diagnosed with Lyme is on IV Ceftriaxone and did not see much if any effect in the first month. The diagnosing doctor was a poor communicator, but the impression we got was that he was disappointed to not see a Herxing response.

He limited her treatment to 30 days, but we found an experienced Lyme doctor who would continue treatment. Additional medications were prescribed and she continued the Ceftrioxone. The original doctor clearly had limited experience with Lyme and even neglected to prescribe Ursodiol with the Ceftriaxone.

My wife took it upon herself to seek out a Hyperbaric Oxygen Therapy doctor and add the HBOT to her regimen. Significant changes started to take place at that point, including Herxing effects. It may be that the Lyme doctor is providing sufficient treatment but improvements definitely corresponded to the addition of HBOT.

What I'm trying to say is if you can get antibiotics, don't give up too soon. My wife is a fighter and she wasn't going to accept no from her original doctor. I can say that my observation is that she was 100% right and her original doctor was not. We do give him credit for the original diagnosis. That alone deserves credit, especially in a medical environment that is so poor in diagnosing Lyme.
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