Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 On Jul 19, 2006, at 5:45 PM, dphf wrote: > Sara > I'm interested in any treatment info you have that might be useful > for IC, for ddil. She struggles fiercely with symptoms and is at a > total loss, as drs around here are useless. > Diane in MI I had scar tissue built up from years of irritation. I found a urologist (one of the biggest medical jerks I've ever met, but I'll give him his due for what he did) who inflated my bladder with air, putting the walls under a lot of pressure. (Yes, it was extremely unpleasant.) He left it there for several minutes. This stretching broke up the scar tissue, and straightened out the little puckers on the bladder wall that would get inflamed and cause the pain. (And, occasionally, would harbor bacteria and actually infect.) This left a smoother wall, which was less susceptible to perforation, lesion, and bacterial colonization. Almost immediately, I went from a bout of cystitis every 2-3 weeks to one every 2-3 years. This was 20 years ago. I do still carry my drugs everywhere, and dose myself at the very first twinge. Seems to stop it in its tracks. Getting this Rx refilled is just a standard part of my annual physical. Since I twice actually had it go bacterial and move into my kidneys -- both times within hours of that first twinge -- I don't want to wait around to see a doctor. Sounds like your daughter needs to see a urologist who knows something about women. They're not easy to find -- most urology patients are male -- but a good gynecologist may know where to send you. Also, you don't say how old your daughter is, but she might benefit from having an endocrine workup. Hormones and thyroid can play an important role in this. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 In truth, I'm fairly certain from history and knowing her (my daughter in law) lifestyle and general physical make up and present health condition, that she is very high risk for CFIDS/FM. She's been in a couple severe car accidents, has already been told she has arthritis in her spine, has frequent headaches, horrible PMS, mood swings, etc etc etc. The chronic aching is to come, but already she experiences more than what is usual for one not yet 30. Very very sensitive to meds, benedryl makes her hyper she says, normal doses of most meds cause more than the normal physical response, and I've witnessed what pain meds do to her...she is a zombie! Anyway, I think the IC is just the tip of the iceburg. Dr. wanted to do a bladder instillation of some " cocktail " every 2 wks for pain control. To which she hastily declined. She began having symptoms immediately following removal of a catheter after a tubal ligation 3 years ago. Was initially treated a number of times for UTI's which eventually were nonexistent. Made her feel less than human when the first course of abx were given to treat e. coli that was cultured, given the explanation that it was from poor hygeine etc. I wanted to do bodily harm to the genius that made that comment. Long before her gyn finally conceded and referred her to the urologist (wonderful for men, not so good for women with IC, as you mentioned) I suggested to her that she research IC. However, being the ego maniac found in most physicians, that information further delayed diagnosis as the mere suggestion by the patient seems to derail the said dr. It's not been pretty, she avoids or knows she needs to avoid exposure to certain things that increase symptoms. It sounds more like hers is something a bit different than yours. Her cystoscopy and biopsy revealed inflammation and bleeding in the bladder wall that finally confirmed what she knew she already had, better than a year after the fact. she's lookinginto dioxycycline therapy, but has no clue where to go with the information to be treated with the high dosages recommended by a woman in London, England. I've recently found info that suggests that may not be as helpful as one might hope. So, we are grasping at straws. One thing for sure, I've yet to find a physician around here that will even begin to explore CFIDS, and DS / DDIL can't afford the expense of FFC. Time will tell how this will play out. she will have to learn to become an advocate for herself, and she's not an especially good listener when it comes to suggestions that are contrary to her comfort zone. So, I bide my time. Thanks for the info. Diane in MI Re: Sara, IC On Jul 19, 2006, at 5:45 PM, dphf wrote: > Sara > I'm interested in any treatment info you have that might be useful > for IC, for ddil. She struggles fiercely with symptoms and is at a > total loss, as drs around here are useless. > Diane in MI I had scar tissue built up from years of irritation. I found a urologist (one of the biggest medical jerks I've ever met, but I'll give him his due for what he did) who inflated my bladder with air, putting the walls under a lot of pressure. (Yes, it was extremely unpleasant.) He left it there for several minutes. This stretching broke up the scar tissue, and straightened out the little puckers on the bladder wall that would get inflamed and cause the pain. (And, occasionally, would harbor bacteria and actually infect.) This left a smoother wall, which was less susceptible to perforation, lesion, and bacterial colonization. Almost immediately, I went from a bout of cystitis every 2-3 weeks to one every 2-3 years. This was 20 years ago. I do still carry my drugs everywhere, and dose myself at the very first twinge. Seems to stop it in its tracks. Getting this Rx refilled is just a standard part of my annual physical. Since I twice actually had it go bacterial and move into my kidneys -- both times within hours of that first twinge -- I don't want to wait around to see a doctor. Sounds like your daughter needs to see a urologist who knows something about women. They're not easy to find -- most urology patients are male -- but a good gynecologist may know where to send you. Also, you don't say how old your daughter is, but she might benefit from having an endocrine workup. Hormones and thyroid can play an important role in this. Sara ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.10.1/391 - Release Date: 7/18/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2006 Report Share Posted July 19, 2006 On Jul 19, 2006, at 7:06 PM, dphf wrote: > Made her feel less than human when the first course of abx were > given to treat e. coli that was cultured, given the explanation > that it was from poor hygeine etc. I wanted to do bodily harm to > the genius that made that comment. Yeah, those geniuses are out there. Dude, I've been living with this as a chronic situation for 15 years -- you think I'm not clued on this? > Long before her gyn finally conceded and referred her to the > urologist (wonderful for men, not so good for women with IC, as you > mentioned) I suggested to her that she research IC. However, being > the ego maniac found in most physicians, that information further > delayed diagnosis as the mere suggestion by the patient seems to > derail the said dr. I remember getting into an argument with a smart-ass young doctor about this. He did his labs and came back to the room, proudly insisting that I did NOT have cystitis. Yes, I do. No, you don't. YES, I do! NO, you don't! There's no bacteria in your sample! YES. I. DO. Go into your office right now and look up " interstitial cystitis. " Then come back, and we can continue this conversation. Which, to his credit, he did. And came back shaking his head: I'll be damned. You do. I became one bold and sassy patient in those battles. I had no idea at the time how useful (and pernicious) that attitude would become in later years. > It's not been pretty, she avoids or knows she needs to avoid > exposure to certain things that increase symptoms. " Certain things, " including tight jeans, cute non-cotton lingerie, coffee, tea, sugar, and sex. In other words: everything that makes life worth living. ; p > It sounds more like hers is something a bit different than > yours. Her cystoscopy and biopsy revealed inflammation and > bleeding in the bladder wall that finally confirmed what she knew > she already had, better than a year after the fact. she's > lookinginto dioxycycline therapy, but has no clue where to go with > the information to be treated with the high dosages recommended by > a woman in London, England. I've recently found info that suggests > that may not be as helpful as one might hope. It may not be. A two-week bout of high-dose doxy, given to cure the second kidney infection, proved to be the triggering illness that I never recovered from. My CFS years officially started right there. > So, we are grasping at straws. One thing for sure, I've yet to > find a physician around here that will even begin to explore CFIDS, > and DS / DDIL can't afford the expense of FFC. Time will tell how > this will play out. she will have to learn to become an advocate > for herself, and she's not an especially good listener when it > comes to suggestions that are contrary to her comfort zone. So, I > bide my time. It's all you can do. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Hi Diane, I'm butting in - hope you don't mind. I too have had very severe IC at times. I had to reduce my diet to be as non-acidic as possible, never take vit C supps or anything with potassium in (these will both initiate an attack) but my saving grace was bicarbonate of soda diulted in water (quite alot over quite a long period of time). Trick is to keep all these measures in place for a good 6 months to a year after all the symptoms have died down. I know all IC sufferers are different but this worked for me. Rosie > > > Hey Sara, I think interstitial cystitis *is* caused by bacteria, but > > often they are in the bladder lining. It can also be caused by > > dysbiosis leading to toxic overflow. But guess what, a lot of > > interstitial cystitis patients are now learning they have lyme. > > > > Do you remember any tickbites that long ago? Just curious. > > I grew up in big-time tickbite country. Didn't get a lot of them > myself, but maybe a couple through the years. > > The IC thing is hereditary in my family, and a structural issue. I > actually found a urologist who was able to cure it completely when I > was in my late 20s. > > Sara > > > > > > -------------------------------------------------------------------- ---------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.394 / Virus Database: 268.10.1/391 - Release Date: 7/18/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Sara, why is it structural and runs in the family? I'm curious about that if you could elaborate. Or by structural do you mean scar tissue? > > > Sara > > I'm interested in any treatment info you have that might be useful > > for IC, for ddil. She struggles fiercely with symptoms and is at a > > total loss, as drs around here are useless. > > Diane in MI > > I had scar tissue built up from years of irritation. I found a > urologist (one of the biggest medical jerks I've ever met, but I'll > give him his due for what he did) who inflated my bladder with air, > putting the walls under a lot of pressure. (Yes, it was extremely > unpleasant.) He left it there for several minutes. > > This stretching broke up the scar tissue, and straightened out the > little puckers on the bladder wall that would get inflamed and cause > the pain. (And, occasionally, would harbor bacteria and actually > infect.) This left a smoother wall, which was less susceptible to > perforation, lesion, and bacterial colonization. Almost immediately, > I went from a bout of cystitis every 2-3 weeks to one every 2-3 > years. This was 20 years ago. > > I do still carry my drugs everywhere, and dose myself at the very > first twinge. Seems to stop it in its tracks. Getting this Rx > refilled is just a standard part of my annual physical. Since I twice > actually had it go bacterial and move into my kidneys -- both times > within hours of that first twinge -- I don't want to wait around to > see a doctor. > > Sounds like your daughter needs to see a urologist who knows > something about women. They're not easy to find -- most urology > patients are male -- but a good gynecologist may know where to send you. > > Also, you don't say how old your daughter is, but she might benefit > from having an endocrine workup. Hormones and thyroid can play an > important role in this. > > Sara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Rosie thanks for the info about the bicarb of soda. Recently found info about treating gout with it too, and since nothing else has helped, DH will be trying that, but watching BP closely. Any untoward side effects from using the Bicarb? diane in MI Re: Sara, IC Hi Diane, I'm butting in - hope you don't mind. I too have had very severe IC at times. I had to reduce my diet to be as non-acidic as possible, never take vit C supps or anything with potassium in (these will both initiate an attack) but my saving grace was bicarbonate of soda diulted in water (quite alot over quite a long period of time). Trick is to keep all these measures in place for a good 6 months to a year after all the symptoms have died down. I know all IC sufferers are different but this worked for me. Rosie . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Hi Diane, Apart from an inclination to burp having drunk it, nothing at all! I really needed a lot of it - about 2 teaspoons in a mug of boiled water, and this very frequently (though reduced as the problem eases). The worst attack I had lasted 2 years at full agonising throttle, so I do know how bad it can be. I had to wait 18 months to see a urologist (surprise, surprise I'm in the UK) and so by the time I saw him I had things reasonably under control. He said to keep on with what I was doing as it was less potentially problematic than the bladder stretching/ sulphur wash that is usual practise here for IC. I asked him if the huge quantities of bicarb could be damaging and he said he could see no reason why they should be. (Interestingly our cat also has IC. When we first detected it having recently adopted her she had much better treatment from the vet than I ever had from the NHS, and apart from some herbal treatment which seemed to calm things down we have had to eliminate dry cat food from her diet - really did the trick- and she had been passing a lot of blood.) Hope this helps, Rosie Rosie thanks for the info about the bicarb of soda. Recently found info about treating gout with it too, and since nothing else has helped, DH will be trying that, but watching BP closely. Any untoward side effects from using the Bicarb? diane in MI Re: Sara, IC Hi Diane, I'm butting in - hope you don't mind. I too have had very severe IC at times. I had to reduce my diet to be as non-acidic as possible, never take vit C supps or anything with potassium in (these will both initiate an attack) but my saving grace was bicarbonate of soda diulted in water (quite alot over quite a long period of time). Trick is to keep all these measures in place for a good 6 months to a year after all the symptoms have died down. I know all IC sufferers are different but this worked for me. Rosie .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 On Jul 20, 2006, at 5:01 AM, jill1313 wrote: > Sara, why is it structural and runs in the family? I'm curious about > that if you could elaborate. Or by structural do you mean scar tissue? The biggest problems were a short urethra (that is, an easy trip for bacteria), which ended in a narrowing right where it meets the bladder. And the way the bladder itself wraps around the uterus -- there was a buckled place in the wall that left an edge, which was prone to crack open. The open spot would irritate, creating IC; and sometimes get infected, creating straight cystitis. Between these two structural flaws (which the urologist actually got in with a scope and looked at, and was thus able to describe in rather too-vivid detail, as I just did), I had a lot of episodes that created a lot of further scarring. Aggressively dilating the narrow part of the urethra, and then inflating the bladder to break up the scarring and straighten out the buckle a bit, helped a great deal. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 > > > It may not be. A two-week bout of high-dose doxy, given to cure the > second kidney infection, proved to be the triggering illness that I > never recovered from. My CFS years officially started right there. > ***Hi Sara - That's interesting that your CFS started after taking the antibiotics. I had a cold for six months as a result of having a bad tooth infection. The CFS didn't come about until three days after starting on penicillin. I've always blamed either the cold or the tooth infection for my CFS, however, it makes me wonder about the antibiotics, if they somehow contributed to the CFS. Take care. Bernie Quote Link to comment Share on other sites More sharing options...
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