Repeat urinary tract infections: What can I do?
I am having repeated urinary tract infections with a variety of bacteria cultured. I have just learned I have fibromyalgia. I need help and don't know who to see. I was also exposed to a lot of mold (Cladosporium, Aspergillus) when I was teaching school. I have retired, but the UTIs have not.
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I lived in Minnesota, and am a patient there for close to 35 years. I know my docs (I also did some medical research work together with the Mayo), and know the system up there.
I feel that I get the best possible health care up there, I don't even want to experiment with unknown facilities.
Why don’t you ask to have the stone pulverized?
Hello, @daphne52, @lindes and all. I'm dealing with multiple and serious UTI's , 4 so far this year, one I ended up with sepsis, one in ED with 1 ending in sepsis, another with protein levels over 800, and RBC, multiple off the charts infections....I was in ED for 3 infections. The last one with the high proteins, etc, I was referred to nephrology and saw doctor within 3 days. I go to Mayo Jax, live in Jacksonville. I am so blessed to be seeing these doctors.
I first went to the Jax Mayo in 2019 during a long, difficult recovery from heart failure and other issues, including an erroneous MS diagnosis for 12 years.
Mayo doctors have saved my life, both literally and figuratively. Heart's doing well. Edema is under better control now after several providers help.
The doctors in ED were very concerned about the protein levels and had a CT to ck for stones. No stones. But, every indications was kidney disease. Nephrology ordered multiple blood tests and urinalysis, including 24 hour urine tests. I had these test after finishing a long course of antibiotic. I had several bags of IV antibiotics in ED. As I did previously with sepsis.
I was also referred to infectious disease. He put me on 500mg Keflex 2x daily, ongoing. Since, I developed intestinal issues and stopped the Keflex for now. An MRI for headaches I began having the last several months, severe including ear/right side .....
Infectious disease referred me to ENT. I had sinus endoscopy, CT and found a serious sphenoid infection that probably picked up in a hospital stay and is very antibiotic resistant. Using antibiotic, steroid saline nasal spray for about a month, then surgery to remove infected tissue, infected bone and etc.
He also referred me to rheumatology. Best move ever. He believes I had an underlying immune reason causing the multiple infections. DX: vasculitis-autoimmune disease of the small vessels throughout the body, all the organs! Not good. Also, pulmonary fibrosis, pulmonary hypertension probably due to sever obstructive sleep apnea, I now have RBC in urine w/o infection, so my organs are bleeding, the small vessels are deteriorating, not getting blood where it needs to go. Not a good thing. But, because of the inquisitive minds of the Mayo doctor and staff and the mayo system, I'm getting all these issues dx and will have treatments for whatever can be treated.
Mayo and I have hope. HOPE.
So, if you are having the issues you seem to have, I'm an example of reasons for you to run to Mayo. I can attest to the excellence of the Jacksonville Mayo. I have a feeling all the Mayo facilities are among the best, I know my doctors are among the best.
I pray you will be blessed as have I with the good care and help and guidance and will find the causes of your problems. Causes and treatment and healing.
Blessings.
Elizabeth
You can call yourself to make appointment in any area or for general medicine.
@happy3bhear, @lindes, @daphne52 and all
In 2019, after again being told I had MS but with no treatment and no further help, I called the Mayo Jax main number and asked for an appointment. I think Amanda @amandajro and Colleen Young @colleenyoung can give you direct numbers and advise you on these issues. They are Connect and Mayo experts with all the answers.
Most of us are regular patients like me. Many whom I've met on these groups have helped me immensely with understanding the illnesses through the interesting variety of groups. I've actually made 'friends' online whom I'll never meet but feel like we can share anything. What a marvelous and important part of healing to have these folks ready and available and wanting to share their experiences and suggestions. This has truly saved my emotional and mental health! I'm very alone and have so enjoyed finding these folks. Another Mayo gift! I'm not alone any longer which has made an enormous difference in my attitude toward life, living today and dealing with tomorrow as it arrives.
I hope you get your appt soon with the perfect doctor to help you where you are now. You can see I hope the benefits of getting to a system such as Mayo. I've had these experiences with Mayo and ended up probably finding diagnoses in other areas that will save or extend my life and definitely have already improved my quality of life.
Blessings to you. May your road be filled with light and healing.
elizabeth
I'm not sure I can request it when my Doc says if there no pain it OK to leave it. The problem is it could actually be my pain and uti problem. He doesn't like patients playing doctor.
I would get up and walk away. Smug loser! If he’s not proactive he wants patients to sit and drool bc he says so. Find another dr who will discuss w you.
I too have a variety of bacteria. I do not get the Ecoli, have not for years. Ninety percent of the utis are Ecoli. My Uro Doctor has never even attempted to talked to me about why mine are he uncommon strands. I had one in May 2021 and another in July 2021 and am frustrated that he does not question the why's when it comes to my issues, just gives me antibiotics sends me away.
Hi Daphne,
You can either self-refer or get a physician referral to request an appointment. Calling is free, so I suggest calling both the Minnesota and Florida locations to find out more. Here is the contact information for Mayo Clinic locations:
http://mayocl.in/1mtmR63
Does anyone have vaginal nerve pain..happens every night when I lie down to sleep..just wondering if anyone else has this and what treatment helped