Entering 12th month of persistent UTI, with regular treatment by variety of antibiotics, none successful at treating E.coli infection. I have CVID and have been infusing myself weekly with gammaglobulin for 3 years. That brings its own set of problems. My microscopic lymphocytic colitis was diagnosed over 3 years ago and I live with an extremely restricted diet but barely controlled diarrhea. One of the UTI antibiotics 2 weeks ago made me violently sick after only one capsule and I spent 8 hours in the bathroom, took 9 showers, couldn't clean myself up from the massive amount of diarrhea. I stopped the antibiotic but of course still have the UTI. I am now taking d.mannose and hope it might get rid of the infection. I just cannot put myself thru any more antibiotics. All of them make me so sick. I am so very tired of having this much diarrhea. I am a prisoner of my house, can barely make it to the bathroom from my bedroom. I cancel more doctors' appointments than I ever keep. It is not the life I thought I would be living at age 69. Any suggestions?
Help needed in Atlanta,
Gail
UTI
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Hi Gail,
I'm no expert but I'll throw some things out there.....
1. D manoose--it heals mine. I think it reduces Mom's incidents.
2. Eat no sugar
3. Eat low carb (paleo is a good way to go)
4. Drink a lot of water, then drink more
5. Are they testing the strain before prescribing the antibiotic
6. Get an appointment with a top doc in Atlanta. Would that be a urologist? I'm not sure who
a woman would go to but I'd try to see an expert. I think there is some experimental
stuff they are doing for UTI's that main stream docs are not familiar with.
7. Look into installing a bidet on your toilet. You will need an electric outlet behind your exisiting toilet.
The problem is the ecoli strains don't respond well to the antibiotics of today. Twenty years
ago UTI's were pretty easily treated by antibiotics. My mother is not getting good results
from antibiotics for UTI's.
A lot of folks have good results from D Manoose. I'm crossing my fingers for you.
UTI's need to be taken seriously as the infection can go into the bloodstream. I'm guessing the
myriad doses of antibiotics probably kicked back the count of the Ecoli but never cleared it.
I'm no expert but I'll throw some things out there.....
1. D manoose--it heals mine. I think it reduces Mom's incidents.
2. Eat no sugar
3. Eat low carb (paleo is a good way to go)
4. Drink a lot of water, then drink more
5. Are they testing the strain before prescribing the antibiotic
6. Get an appointment with a top doc in Atlanta. Would that be a urologist? I'm not sure who
a woman would go to but I'd try to see an expert. I think there is some experimental
stuff they are doing for UTI's that main stream docs are not familiar with.
7. Look into installing a bidet on your toilet. You will need an electric outlet behind your exisiting toilet.
The problem is the ecoli strains don't respond well to the antibiotics of today. Twenty years
ago UTI's were pretty easily treated by antibiotics. My mother is not getting good results
from antibiotics for UTI's.
A lot of folks have good results from D Manoose. I'm crossing my fingers for you.
UTI's need to be taken seriously as the infection can go into the bloodstream. I'm guessing the
myriad doses of antibiotics probably kicked back the count of the Ecoli but never cleared it.
uti
Brandy, thanks for thoughts - you are probably correct about antibiotics vs e coli. I truly never feel sick so I think it is a very hidden strain they have been battling. They have run DNA tests to target the specific strain with particular antibiotics which would work best but so far no success or the drug makes me far too sick which causes more diarrhea which triggers splash back from toilet (even though I have a highrise seat) and splash back causes more infection. I am thoroughly disgusted with entire situation. Maybe it will just progress to something deadly and take me out of my misery. This is awful as it is.
Gail,
Have you had IV antibiotics for the UTI?
The only reason I asked is Mom got IV antibiotics in hospital about 7 years ago and they worked the best by far.
Mom is a celiac. My theory with Mom is that she doesn't absorb the oral antibiotics that well due to celiac disease.
The IV antibiotics were truly miraculous.
It might be something to talk to your docs about. In Mom's town they can only be given in the hospital or ER. I asked if we
could do IV antibiotics at the house but not in Mom's town.
Have you had IV antibiotics for the UTI?
The only reason I asked is Mom got IV antibiotics in hospital about 7 years ago and they worked the best by far.
Mom is a celiac. My theory with Mom is that she doesn't absorb the oral antibiotics that well due to celiac disease.
The IV antibiotics were truly miraculous.
It might be something to talk to your docs about. In Mom's town they can only be given in the hospital or ER. I asked if we
could do IV antibiotics at the house but not in Mom's town.
Gail,
Read paragraph under figure 4, it talks about long term UTI infections in those with CVID.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2718064/
Read paragraph under figure 4, it talks about long term UTI infections in those with CVID.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2718064/
Great info, Brandy, can't wait to read what you posted and I saved it to my PC. I have suggested IV antibiotics before. I believe I can do them here at home but they would have to activate my chest port or put in a shunt in my arm for me to do this. Since I am homebound at this point, the drug company supplying me could supply the antibiotics for me to use daily. Will check with my immunologist about doing this. I too believe oral antibiotics are just flushing thru my system and doing no good, especially since I digest so little of what goes in my mouth. Thanks for all your ideas.
Mom got them through the ER but my boyfriend got them through a picc line after he was released from the hospital due
to liver abscesses. My boyfriend returned to work and I would drop by to administer them
Good luck with everything! I think you have a strong case since you have had UTI for over a year.
Mom lives in a rural remote part of Maryland and when I asked her doc about IV antibiotics in home it was not an option.
I believe you living in Atlanta will have much more options.
to liver abscesses. My boyfriend returned to work and I would drop by to administer them
Good luck with everything! I think you have a strong case since you have had UTI for over a year.
Mom lives in a rural remote part of Maryland and when I asked her doc about IV antibiotics in home it was not an option.
I believe you living in Atlanta will have much more options.
PICC
PICC installed after 4 days in hospital. No choice as have to infuse antibiotic at home. Too sick to do it anywhere else. MC out of control from too many antibiotics in hospital. No argument at all about having PICC or home health nurse to train me or anything. I guess the MC was a deciding factor when they saw how out of control it was at the hospital.
gail
gail