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Post by cobweb2 on Jan 2, 2008 9:13:26 GMT -8
Interstitial Cystitis is no an infection per say- nor is it a "do-infection" of lyme disease.
However I would like to say that within a month after my initial inadequate treatment of three weeks Ceftin in 2004 I began having horrendous urinary/bladder problems.
Lengthy and invasive treatments and operations-with the difficulties still unresolved. I am now off to see my urogynecologist.
More later. I just feel frustrated.
Cobby
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Post by LymeEnigma on Jan 2, 2008 10:28:48 GMT -8
Cobby, I have no idea what the specific cause to this is, but I have been having urinary tract difficulties since around age five: inability to urinate and inability to empty the bladder completely are my two big problems. I used to get really terrible burning when I couldn't go, but that doesn't seem so bad anymore. I also noticed that it is always at its worst right before or right at the beginning of my period.
My the time my GP finally referred me to a urologist by insurance was already all used up, and I just never went back. If there is a Lyme and/or co-infection connection to this, then all of those flea bites back when my twin sis and I were four or five had to be connected to at least part of my illness; that's one of the most vivid memories I have from "before the issue" ... standing outside, suddenly finding both of our legs black with fleas, and a family member spraying Raid on us and throwing us into the bath.... I know that I already mentioned once that sis and I both have suffered from "fibromyalgia" since around puberty, and she also gets the urinary tract problem on and off?
I don't know much, but I have learned two little gems: drinking lots of water helps ... drinking ANY soda makes things worse.
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Post by cobweb2 on Jan 2, 2008 13:47:01 GMT -8
Sounds like you could be a candidate for IC also. My IC was diagnosed with a URODynamics test-they distended my bladder with water or air, I forget which, and then took pictures with a camera. Sorry I don't have a digital copy to send you. Anyway- post inadequate treatment for Lyme- can I say that often enough-my muscles , including the pelvic floor, became so weak everything fell out! So I was "gutted", and my bladder was repositioned with a mesh sling to hold it in place. Source of bleeding is mesh errosion and a vaginal polyp-which has gotten bigger and needs to be removed. I know about the food irritatants list- in fact all citric acid-including lemon is on the taboo list. The medication Elmiron has helped me-but my script ran out recently and my thinking was- "well, let's see what happens if I don't take it" Not good. the return of all original symptoms. But he told me that starting the meds back up will restore whatever ground I lost by not taking the meds. UNCLE I give up- I guess in this case "chronic" does mean "chronic". Ps The chilli has me thinking the IBS diagnosis is true too. I stopped taking the Omnicef- i just might start taking it again. I'm a mess today. But my elbow seems to be all right- colorful but less painful.
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Post by LymeEnigma on Jan 2, 2008 16:05:09 GMT -8
At least your elbow is feeling better....
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Post by LymeEnigma on Jan 6, 2008 22:33:17 GMT -8
I've got one of my younger sisters here for the weekend (the one who made the video) and she says that she gets the same urinary tract problems, as well. Hers started when she was in her late teens/early twenties, and she also has no idea what brought hers on, either ... so that's three of four of us sisters who have this problem, as far as I know....
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Post by cobweb2 on Jan 7, 2008 7:17:12 GMT -8
My little experiment of stopping the Elmiron, prescribed for the IC, only proved that I really did need to take it. I almost had to start using pullups again. And the abdominal pain returned. I cried UNCLE and had my script refilled. The good news is that I am back to comfort level again. I guess I just don't really understand why this would be a chronic condition? Unless of course, it is related to "chronic lyme". I feel blessed for a couple of reasons-1.) my IC was properly diagnosed and 2.)Elmiron is working for me. Not everyone responds to treatment. I am fortunate. I urge anyone with urinary problems to pursue diagnoses until satisfied with results. The pride I feel in admitting to these problems is greater than the shame I felt when I allowed myself to be a slave to them. As someone once said "want your life back-then take it"
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Post by enochroot on Jan 7, 2008 9:07:22 GMT -8
I have been around the block urinary-wise...Had my "potato baked" and boy that was fun (TUMT procedure where they microwave your prostate - girls - you get a pass on this one) I take Avodart now which seems to help...But for a while it was madness - getting up to pee every 2 hours every night - take an hour to fall asleep, sleep an hour - then BOOF gotta get up - do it again!
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Post by LymeEnigma on Jan 7, 2008 10:38:37 GMT -8
It's interesting you say that, enochroot ... the way I describe my problem as similar to what a guy complains of when he is having prostate issues ... only I am not a guy, and therefore I do not have a prostate. I feel for anyone who has that problem, no matter what the cause. It is VERY uncomfortable.
Cobby, what kind of med is Elmiron (I guess I could look it up), and are you on it specifically for the urinary tract problems? Do you think there is a good chance my problem could progress if I don't see a urologist about it?
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Post by itsybitsyone on Jan 7, 2008 12:25:07 GMT -8
I don't have this. I have only had this two/three times in my life after I was 5 (before 5 years old it was chronic) and I must say I am sorry because the times it has happened, its been awful.
HOWEVER...Sjogren's Syndrome can do this. The vaginal/urethra opening becomes dry, which then causes some chafing, and then injury, which makes the urerthra try to heal shut.
Had mine opened by a doc when I was 4 with no anesthtic...one of my first memories and a VERY vivid one.
Also, Sjogren's and other autoimmune diseases can cause inflammation of the urethra, causing similar symptoms as well. I have had this a few times with NO infection, no bactera. Awful.
That being said, operations do NOT help this condition if it is autoimmune.
Also, my aunt, who has chron's, had operations done for similar situations and they didn't work for her either.
Drink a lot of water. Use replense or rephresh to keep the area moist and PH balanced. Do old fashined drawing baths (with epsom salts, NEVER bubble baths...never scented salts) Don't do the wild thing without lubricant. I know it sounds crazy, and I know it will not "fix" it, but it will help.
I also get bartholin cysts. From the Sjogren symptoms the Lyme brought. That's a vaginal fluid cyst (sorry enoch!!) from clogged vaginal lubricant ducts due to similar problems.
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Post by cobweb2 on Jan 7, 2008 14:00:36 GMT -8
Enoch- IC is not gender specific. I could try to find the fact sheet that comes with the med-but it was easier to just look it up.
"Your pelvic pain doesn’t have to be a mystery. If you’re not sure what’s causing your abdominal discomfort, and prior treatments have not helped, ask your doctor if you have interstitial cystitis (IC). If you have IC, taking ELMIRON may help. So now you can see hope where all you feel is pain.
Important Safety Information.
ELMIRON is indicated for the relief of bladder pain or discomfort associated with interstitial cystitis. ELMIRON has been shown to be generally well-tolerated. The most common side effects were blood in stool, diarrhea, nausea, hair loss, headache, rash, upset stomach, abdominal pain, liver function abnormalities and dizziness. When side effects did occur, they were generally mild and usually did not interfere with continuing treatment. Hair loss, when it occurred, was almost always limited to a single area of the scalp, and it grew back when ELMIRON was discontinued.
ELMIRON is a weak anticoagulant (blood thinner), which may increase bleeding. Call your doctor if you will be undergoing surgery or will begin taking anticoagulant therapy, such as warfarin, heparin or high doses of aspirin; or anti-inflammatory drugs, such as ibuprofen."
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Post by cobweb2 on Jan 7, 2008 14:07:55 GMT -8
Before I violate any copyrights the following comes from the website "Interstitial Cystitis Advice"
"What is Elmiron?
Elmiron is an FDA approved drug (since 1996) used in the treatment of Interstitial Cystitis (IC). Elmiron's chemical name is pentosan polysulfate sodium. It is manufactured in 100mg doses, taken in pill form. In the United States it is manufactured by Alza Pharmaceuticals. Elmiron is a fairly new drug treatment for IC. At it's root Elmiron is a very weak anticoagulant (blood thinner) when administered through an IV, however taking it orally as IC patients do, has very little of this action. Elmiron is typically considered to be a Heparinoid, which means that it is structurally similar to heparin sulfate an element found on the bladder surface mucin. Elmiron is excreted through the urine and therefore a small amount of it passes through the bladder unchanged. This action is thought to cause Elmiron to adhere to the bladder lining. Elmiron is metabolised through the liver, and therefore patients with pre-existing liver conditions may not be suitable for Elmiron.
What is Elmiron's chemical compound (name)?
â-D-Xylan (1->4) 2, 3 bis (hydrogen sulfate), sodium salt. It has a molecular weight of 4,000-6,000 Dalton. Elmiron is a white, odourless powder, which is soluble in water. It is a semi synthetic Heparin like drug (macromolecular carbohydrate) which resembles glycosaminoglycans chemically, and in it's overall structure.
What is the recommended dosage of Elmiron?
100mgs taken 3 times daily. Elmiron is manufactured in 100mg white capsules that have a hard gelatine coating. Some IC patients note an adverse reaction to gelatine and therefore opt to remove the medication from the capsule prior to consuming it.
How does Elmiron affect Interstitial Cystitis?
Though the medical community does not yet understand exactly how Elmiron works, the most likely reason is that it appears to coat the bladder and subsequently aid in the restoration of the bladder's surface or glycosaminoglycan (GAG) layer. This very important layer is often damaged/deteriorated in IC patients for whatever reason (no exact cause of IC is thus far known, so reasons as to why the GAG layer becomes damaged are also not precisely known at this point in time.) This layer is thought to be responsible for guarding the bladder wall form the irritants in urine and from bacteria. When the GAG layer is damaged symptoms such as inflammation and pain often occur. Elmiron is thought to work like an artificial GAG layer, and thusly relief may be obtained as the bladder has a chance to be "protected" by this new GAG layer, while the original has time to regenerate and heal."
Hey ,I should copy this to ask my doctor-they used the words regenerate and heal. Which sounds to me like IC isn't necessarily chronic. Anyway, IC is basically an inflamation of the bladder, but maybe I said that already.
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Post by LymeEnigma on Jan 7, 2008 19:20:46 GMT -8
Nancy, the description of that early memory of yours gave me the heebie-jeebies ... how awful! You give some great advice, though ... sometimes sitting in a warm sitz-bath is about all one can do.
Thanks for the info on Elmiron, Cobby!
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Post by itsybitsyone on Jan 8, 2008 7:37:35 GMT -8
Yes...not a fond memory. I had to sit in a water filled tub to pee because it was too painful to pee on the tiolet afterward.
I remember hiding behind the couch, holding it, crying, because I didn't want to have to go because it burned so bad. Wonderful childhood memories.
I NEVER take peeing for granted.
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Post by LymeEnigma on Jan 8, 2008 9:52:46 GMT -8
Man, I'd be traumatized for life....
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Post by itsybitsyone on Jan 8, 2008 10:04:59 GMT -8
Hey, there are very valid reasons why I am such a traumatized pitchfork-carrying nutcase.
This is just one of many.
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