Professor has hit the nail on the head with IC. I live in the US. But, to get rid of Interstical Cystis I’d travel on my last dime to work with him for a cure. I do believe the theory that has been tossed around for sometime now has finally came to be on the cusp of fact. Oh, only if this is almost 95% proven it would save 100,000s of suffers. Some of these ladies are denied care. Denied Pain Management, commit sucide, lose husbands, go bankrupt just trying to get well. Then the real kicker is if it goes unchecked long enough we get to have our dried up, ulcerated bladder removed. After that there can always be phantom pain. The US has got to raise above the cloud and help us. Not only help us, but help any of your own loved ones. The nations Labs need equipment now. Positivity now. Testing that PathOGenius, Granger, and Fry Labs is an absolute must for the future of medicine and diagnoses of these miscropic infections, so called supper bugs. Our normal labs are missing so much. People are suffering and even dying needlessly. Septic is where I was heading before PathOGenius found 6 different bacterial infections in my urine. I had IC since 2012. I continue to flare at times. I have spent 1000s of dollars trying everything I could.
It is late, but I’ll continue my story soon. Please read about Professor Malone Lee’s practice. Let’s band together and get these Labs the equipment they need and the personnel to run these test. These test can cure fungus feet, wound care, bed sores, upper respiratory, severed limbs infections, UTIs,Interstical Cystis, stool samples turound time is 24 to 48 hours. C diff, just think. Knowing you have that within 24 hrs could make all the difference. Lower health care cost. The cure saves 1000.00s of dollars. Instead of the bandaids over and over again.
To be continued…..
I must appreciate what Doc did for me, if not for a URO and his PA I would have suffer more and worse than I did. Many IC friends cannot find help, a doctor for support, a doctor that even knows what IC is about. A close friend on Imspire dropped off recently. She has had horrible support and suffered beyond imagination. We are at opposite ends of the spectrum
I made friends
Added insert, edit later.
I must admit I was already on Pain Management when I,was,diagnosed with IC. So, I was Amitripline from URO. 50 mg at night. This medication I broke in half. I thought it was this med causing my fatigue. My Pain Manag Doc added Zoloft in Dec of 2013, I,was really down and in so much pain. This med caused extream distinction for me. I’d sit and stare out my Kitchen window for hours each morning. I lost most of my ambition to care about anything much. Instills were added and prescribed for home catherization. By this time I lost 30 lbs, hollowed eyed and even more exhausted. Stomach was torn up. I missed my Sons wedding reception. Elmiron, Uribel were on board, Golden Harvest yeast, L-Proline, magnesium, vit C powdered. Non acidic vit C.
All this on top of my normal pain management was rather overwhelmimg to,say the least. So, Zoloft was stopped after I researched and found Zoloft Zombies. Added, Wes Cymbalta,,now at 60 ml. This works. Not as much anxiety, helps nerve pain as well. Which I suffer from Fibromyalgia pain on occasion.
I began to lie in my bed more and more. From the sofa to bed. ,occasionally I’d get a day break. No potassium, or acidic foods. Dehydration, migraines, just total useless person. By the time I took care of myself the day was well into 4 pm. Hubs comes home at 5 pm. Needless to say annoyed with me most evenings. I’d stopped cooking,,cleaning and even my hygiene was faltered. This was not me. Added to,side effects were, ” hot mouth syndrome”. It is now the opposit, to much saliva. ( who knows why?). Swallowing was a problem at times,,this was scary crap. My body began a process of muscle tone lose, no social life, no Grandchildren. …..
No, cooking for holidays, in other words my life pretty much stopped for 2012″until 2017. This is too many years.
DISEASE, IC A PAT ON THE SHOULDER, NOT CUREABLE, BUT MANAGABLE. WHAT THE HECK!
Short story, saw a younger Gastrointestinal doc, he found inflammation in colon and stomach. He treated me with a round of antibiotics and three bottles of a med that was for colitis. I have microscopic colitis. My old Gastrointestinal Doc, put me way to many scopes and still left me on same medication, Asacol. Did not work, 10 a day. Useless. 10″years I,went through stomach problems, uncontrolable at times. No rhyme or reason.
Find a younger doc. It’s helps. Them I tested with Microgendx.com. Then it was PathoGenius.com.
They found 4 or 5 hidden bacterial infections. Serious ones at,that. HAI are being looked over.
Molecular testing is newest Labs and other Labs are not equipped to find these type of infections.
Lastly, I had the support of three doctors. Not my URO, but womams specialist, IDD, amd Primary Care.
So, with guidence Imtreated with antibiotics. Cathed the first four. Fathered 2 DNA round. Them oral Bactrium and Doxycycline. 500 mugs for 30 days, break for flair of E. coli took microbid for ten days as instructed. Then back to Dyxocline. 30 days wait two weeks and retest,with a Micro.
IT WORKED! NO PAIN SINCE FIRST OF 2017. Continue to,add foods back and sodas. Sexually active, planting flowers, enjoying life again. I wait for another shoe to drop, but so far, fatigue is my largest problem. My back is out but that happens. I ve, had two back surgeries, histo, gallbladder,removal, root canal. Also visited nursing homes, cared for my elderly parents, worked with root-on, ate chicken, potatoes, etc. all of which may have caused Entobactor, Enterococcus, klepesela pneumonia. E-coli just,happens.
In hind site I really feel like I,was,dyeing. Going septic would have been next step. Yet, I drove myself to,research, go to doctors, make phone calls and read research. Science is astounding what they have done. Professor Malone Lee, of,the U.K. Marlowe in Aussie, Chung, the list goes on and on.
I made friends on Inspire,that are irreplaceable. I can only hope you’ll do,the same for yourselfs and the people to,come after,us. Awareness is so difficult for IC ers. We must stick together and pay forward what you have learned. I have three Granddaughters to inform along with there Mothers. Who look at me like I,have two,heads.
Off to bed, prayers and hope,for all,
Do yourself,,your husband, you families the test,
What can it hurt, and it may just help an whole bunch