Multiple Sclerosis Community
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Avatar universal

I'm Back

Well, after a very long absence from the board, I am back.

This last year has been VERY difficult.  Constant UTI's and Bladder infections since March mean that I have been on way too many Antibiotics!!!  Gentamycin shots, Tobramycin shots, Hospitalization in August with Gentamycin and Tobramycin IV's, continued oral antibiotics, more Gentamycin shots, Tobramycin shots, Hospitalization in November with Amikacin IV through a PICC line and sent home with two weeks of Amikacin IV's through the PICC line.  

I saw an Infectious Disease Specialist and he advised me that I cannot have any more oral antibiotics for two years and was told I will have to be hospitalized.  One week after this visit, I got another infection so the specialist told me that he was hoping I would go longer than a week without an infection.  He said I'm in a very dangerous situation with the antibiotics so his suggestion was to try to get rid of this infection by drinking alot of water, cranberry juice and taking cranberry pills.  As of this last week, I think I'm clear of that infection.

Right after the Christmas holiday, I wound up with a severe case of Pityriasis Rosea and then I got an Upper Respiratory Infection.  Needless to say, I'm so ready to be half way healthy again.  Well, as well as possible when having MS.

My MS has seemed to progress a bit.  I am in the process of getting approved for a motorized chair.  I don't need it 24/7, just for longer distant walks.  

I saw my Dr. today and he has suggested I try Metanx.  It's 145.00 for a 90 day supply.  He has a relative with MS and says she takes it and has had good results with it.  I have a Niece who is an Herbalist.  She says Oatstraw is good for the MS, Bladder issues and OsteoArthritis (which I have in my hands and feet) UGH!   I'm not sure if I'm willing to spend the 145.00 on the Metanx.  The Oatstraw isn't very expensive.  She has several MS patients who have good success with Oatstraw, so that may be the best option for me.

Depending on how I feel, will determine how often I'm around, but I did want to check back in.  Sorry for the long absence.  I do hope you all are doing well.
6 Responses
488198 tn?1493878692
I'm sorry the year has been difficult for you. I've never heard of any of those medications you name, so I can't comment on those. I'm curious why you want to use the Metanx or Oatstraw. Do you use a traditional DMD?

As you've been diagnosed for several years, you undoubtedly have had many significant experiences that can help answer the questions of others here. Such input is welcomed anytime!
751951 tn?1406636463
IIRC, I had Gentamycin chosen after a urine culture (that took 2 days) identified the bug I picked from the Radiology Department, while hospitalized for major kidney surgery in 1986(7?).  I remember the best nurse on that floor concurring with my assessment that it made my urine smell like jet fuel.  She said she could tell which patients were on IV Gentamycin by the "fragrance" in the hallways outside the rooms.  Did the trick, though.
Avatar universal
No, my Dr. said I had MS for many years before I was even diagnosed and that it wouldn't help me with my relapses.  Another Dr. said that because I have some other problems that my immune system couldn't handle the suppression.  So, I just take muscle relaxers when I have problems with spasms.  

Cymbalta helps me with some of the pain I have.  I take it for depression and found that some of my pain went away.  If I miss the Cymbalta, the pain swarms me and it takes me a long while to get it back under control.
739070 tn?1338607002
What DMD are you on? Your immune system is shot. I cannot believe the amount and types of antibiotcs they have given you...major antibiotics!!!!

Wishing you a better new year!!!

Sending feel better thoughts,
4461995 tn?1357958708
Oh my!  Chemical soup you are, my dear.  Yick. I'm sure you're feeling like a pin cushion and medical school experiment also.  So sorry!
Can you tell when you have a UTI?  I had one for over a month without even knowing it.  As it was my first (lucky ducky I know) with MS.  I was shocked that I felt nothing.  ?!?!  In my 20s they hurt like hell.  
It would be great to give your immune system a chance to build up.  Something that helps me alot with colds/flu - any kind of virus or infection:  juice of 1/2 lemon, honey, cayenne, mashed clove of garlic in cup of boiling water.  
If you want to go the herbal infusion route....oatstraw is supposed to be  good for your immunity for overall health and to build a natural resistance to disease.  it has antibiotic properties.  vitamin A,B1, B2 D. E, Zinc,  silicon and a lot of other healthy things.  Another herb suggested for MS is Pau d'Arco.  This one is worth Googling.  Interesting history.  Fights candida,  natural antibacterial, antiviral, antimicrobia, antifungal and antitumour.  Boosts the immune system.  A cup every day - consistently throughout the day to keep levels stable for all the things it is helping/fighting!  This info is from a book I live by called "20,000 Secrets of Tea" by Victoria Zak.  Fascinating stuff.  I'll make a quart infusion of several different herbs altogether in a GLASS jar.  
If you are at all interested in this stuff (I obviously think it is fascinating! Check out Susun Weed's UTube video and info.  I think you can get the herbs cheaply from Carlson vitamins.  Don't go to your local health food store!  I have paid $7 a box that I found on line for $2.99.  Definitely worth a try and great way to flush your system out of toxins.  Maybe ask about Milk Thistle capsules also for your liver.....it has to be tired!  That is supposed to specifically clean your liver.
Anyway. good luck.  Hope I didn't bore you to death!
TAKE CARE!!!!!!  
Avatar universal
Ren, yes, I feel like a walking chemical tank!

I do know when I have a UTI/Bladder infection.  

My immune system does need to build up.  I appreciate the lemon, honey, cayenne, garlic recipe.  I will try it.  

I can't wait to get the oatstraw.  I've never heard of Pau d'Arco.  I'll look at it.

Thank you, all for your comments.
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