Recent content by SavoringLife

Wow, Kay, I am just now reading this thread -- so sorry to hear all you have been going through. Once again, you are my hero -- Web is lucky to have you on your side. My husband, Jim, also got his original tube replaced with a Mic-Key last month. All went fine, (although there was a great...

Thank you to everyone for your suggestions. Very much appreciated!

My husband ("beanjt" screen name on this forum) has a constant bad taste in his mouth. It started almost two years ago, just before he noticed his first signs of neck weakness. It is difficult to describe the taste -- not really metallic, more sour-like, though. He has tried many remedies...

Hi Kay Marie, To answer your question, no, Jim was definitely not awake and uncomfortable during the procedure! And, he did not have a drainage bag either. I have never heard of that. Glad to hear Web is doing well. It has been a week since Jim's procedure and he is now up to 6 cans/day...

Kay -- you are amazing! I feel silly even complaining about Jim's recovery issues after reading what you & Web went through! Hope he is continuing to recover well, and yes, Jim walked hunched over for 4 days. Just now able to walk more upright and it's been almost 1 week since surgery...

We are exploring getting a Peg tube for my husband as his swallowing difficulties are worsening. I remember reading somewhere on the forum (now can't find it) that there is a minimum FVC required in order to get the surgery. Does anyone know what that is? I recall it was somewhere around...

I add BeneCalorie to my husbands food. It is a tasteless liquid that adds 330 calories per serving. It's a good way to increase the amount of calories, without increasing the quantity of food. He also drinks EnsurePlus.

As I understand it, high liver enzymes mean that there is too much stress on the liver trying to clean the toxins (in this case high-dosage antiobiotics) from the blood. If they remain high for an extended period, then permanent liver damage could occur.

A comment on the ceftriaxone trial: we were also interested in the ceftriaxone trial, but given that half will get the placebo, decided against it. It seemed a lot of hassle -- installation of a hickman, daily drug injections for a year -- if you don't get the actual drug. (BTW...we...

Hi Kathy, Your story sounds soooo similar to ours. We live in Connecticut (the epicenter of Lyme Disease, it seems) so we also had emphatic suggestions to pursue Lyme. As someone mentioned above, for peace of mind we had several different Lyme & tick-disease tests performed multiple times...

I just sent the email to our two senators in Connecticut. Very easy to do. Indigo -- what is the name on your FB page? I'd love to see how you are displaying the info, so I can do something similar on my page. (Mine is Kelly Turner Bean).

My husband (Jim, age 44, symptoms in shoulders / arms / neck, diagnosed 4/09) is enrolled in the SB509 trial at Hopkins. Had his first dosing in early August with no problems. Had his Day 30 visit last week. He didn't necessarily notice any changes / slowing of symptoms since the...

My husband passed the screening and enrolled in this study in August. Had his first dosing last month. While he doesn't necessarily feel better, I notice that his speech is a bit easier to understand. His second dosing is in 2 months. We'd love to hear from anybody who has had their...

Hi Cookie, We go to the Johns Hopkins clinic (my husband is a PALS) and have been quite satisfied. We used to go to the clinic at Columbia / New York Presbyterian. The staff there was knowledgeable, however Johns Hopkins seemed to have more current and up-to-date approaches. Good luck.

My husband screened for the SB509 trial yesterday at Hopkins. As others have noted, it involved blood work, EKG, general check-up, rectal exam to screen for cancer, breathing test. Most importantly, it required that he first noticed symptoms less than 3 years ago. We met this criteria...