Update on Jim
 

I haven't really updated to everyone on Jim's condition so here it is. :D

The new urologist is wonderful and he's on top of Jim's condition regarding his chronic UTI's. Although he is hard to get in touch with, he is talking with Infectious Disease to figure out a plan of attack on his various bacteria wreaking havoc on his bladder. One idea will be to flush his bladder with antibiotics. I currently flush his bladder now every other day with saline. The urologist is concerned with resistance and so flushing seems to be the route to take. I'll update further once he gets back to us.

Jim's new primary concurs with the urologist and is on the team as well. His FIL has ms and is resistant to all oral antibiotics due to his chronic UTI's as well and is interested in Jim's case not only for Jim but for his FIL. Jim, in the meantime is taking Azo cranberry and vitamin c as a preventative.

We also saw the neuro last month. Jim has NO active lesions!!!!! She recommended us to try cutting back on Jim's meds to see how he does. All of Jim's doctors, urologist, neuro, spinal cord and primary knows he smokes mj and approve. So far Jim has been able to cut back on his valium, gabapentin and tizanidine. Our goal is to completely come off the gaba and tizanidine. For some, mj works and not for others. We see a major impact in terms of cutting back on so many meds. We don't encourage anyone to do what Jim does, but for him, it works.

His pain level is the same and we don't think we'll be cutting back on his methadone or baclofen as these meds work on his daily ms symptoms. The gaba and tizanidine were specifically given for nerve pain so this is why we've been successful so far. The valium we are weening because Jim has taken that since 1988 at the same dosage. At this point we feel it may not even be working and the other meds are over riding it anyway.

Nothing is in stone, it's all a trial. So that's Jim's update and we are encouraged for his future. Once the UTI's are under control we are hopeful Jim will be able to finally live the rewards of having no active lesions, if only for a little while. :D

Thanks for the update, Sandy. Jim is so fortunate to have you....you take such good care of him. :)

He's been through so much - he's due for a break and so are you. I hope this new doctor is the ticket to a much deserved reprieve for the both of you. :hug:

great job, as always, Spitfire !!

:cool:

thank you Sandy and as Kelly said Jim is one lucky guy, to have you by his side,

Good to hear things are moving foward:)

HI sweetie pie Sandy!! Glad to hear an update on your darling Jim. Give him a BIG HUG for me... and tell him to hug YOU back for me to ok?

Have you ever had him evaluated by someone who uses NRT? THat is nutrition response testing. Specialized nutritionists, chiropractor, wholistic type professionals use this. Its amazing in finding out where you may be toxic, deficient or however your systems may be off balanced which in turn keeps the body suffering, causing multiple symptoms or infections.

NRT identifies and evaluates all body systems, and parts of the brain. It has amazing results using whole foods ( in tablet or drop form) where the body lacks in nutrition. He was able to give me back my balance, correct my fatigue and cognitive abilities really improved a lot!! My neuros send me to him whenever I have new symptoms. My grandson could not speak, autistic like and was detoxed from mercury and another chemical. He talks well now.

Just being chronic with meds and all that Jim goes through would make him a candidate. My husband went through an eval and it amazingly found out where he was so toxic that it was keeping him sick with seizures. Too late for him tho, as you remember he suddenly passed last July 5th. At least I have peace of mind that we know what took him so young. ITs worth your Jim feeling better with optimal health. The meds alone, along with his symptoms, would warrant better nutritional balance. Amazing health benefits and wellness when the brain is well fed nutritionally. Our American diet alone robs us of so many nutrients.

OH well.. thanks again.. miss you

Because I care...Jan

that is GREAT news sandy. i'm so pleased for both of you.
having a good team of drs working together is the best.

i hope jim has con't good luck coming off these meds.
it sounds like you've got a great plan of care working for him.

Thank you Sandy. We always like to hear how Jim is going, but good news is always the best.

Thanks for the update, and thank you also for sharing your photo album. :D

Really glad to hear there is no active inflammation, and Jim seems to have stabilized. :hug:

Thanks for the update.

Cherie

That's great news Sandy!!!

I hope they are able to figure out the UTI issue, sooner than later!!!

:hug:

That's great news about the new docs Sandy and that Jim is doing well. I hope weening him off the meds helps. Keep up with the updates! :hug:

Thanks and congrats to two of my bestest buddies! Love you both!

Great news Sandy. Good Luck to Jim on all the new changes!


Jappy :hug:

One moose size hug for the wonderful Mrs. Sandy and my buddy Big Jim.:hug:

Glad to hear that there are no active leisons. :Dancing-Chilli:

Hope the docs can figure out the UTI thing here soon. Thanks for the update on Jim. :hug:

Ok, the urologist called this afternoon. A Sunday, can you believe that? He thinks we should just let things remain as they are. He said he does not want to treat Jim every time he has bacteria in his bladder because with a stoma made out of intestines, he will always have some type of bacteria. He said by no means does this mean he's giving up. He said Jim's condition is very serious and he concurs with all the other doctors that resistance to antibiotics is the concern.

The idea of flushing with antibiotics is still on the back burner but not right now. Infectious Disease said they don't really like to do that because of resistance at the source and if they do it would only be for six months or less. Also on the back burner is theraputic antibiotics, but again, the fear of resistance is a concern to all of the doctors.

He said Jim's spinal cord doctor is amazing and has done a great job taking care of Jim. He plans to call him tomorrow to run over a few things. So, basically the VA was right on about Jim's bladder issues. This saddens me as I thought maybe there was something out there to make Jim better. On the other hand, I am relieved that the VA did do what was needed and no mistakes were made.

On a lighter note, we will continue to see this urologist and not the VA. He is much closer to where we live and this will be easier on Jim if he is ever admitted for a urology issue. Also he wants Jim to get a cystoscopy every year starting on the 10th year post surgery. He mentioned that sometimes, rarely, cancer can develop at the stoma site and he would like to keep an eye on Jim because of that.

So, that's it. Oh he did mention Jim's severe ms and how deciphering what is an urology issue and what is a ms issue remains a problem. Why does that still bother me after all these years when I hear it? To us Jim's ms is stable not severe. Oh well, I guess since we live with it everyday it doesn't seem severe. :confused:

Well, dang it all! Kind of bittersweet news. On one hand I was really hoping that a lot more could be done. On the other hand it is good to know that the VA was doing a good job.

I will pray that this new team of docs as well as the ones from the VA will find a treatment plan that will work in Jim's best interest.:hug: