Ureaplasma urealyticum 2 year long nightmare ongoing

[PlainJane]

am at my wit's end with this ureaplasma urealyticum infection. I will make a long story short.

25 y/o female. Symptoms of frequency (upto 10 times/hr), urgency, nocturia (every 1-2 hrs), icontinence and debilitating fatigue. Infection went undiagnosed for 19 months. Tired Ofloxacin with no relief. Now on doxycycline + azithromycin for 1 week so far with no relief (Rx is for one month).

My GP doesn't believe that my symptoms are caused by ureaplasma nevermind the fact that it was cultured in August.

Anyone have any advice for me??

Thanks

[massagedoula]

Hi...
I think that I have corresponded with you before on the IC Hope board. I am not usually on there, I am mostly on this message board. If I were you, I would want to know if the ureaplasma is still there. Can you get re-tested? If it is gone from all the antibiotics that you took, but you still have symptoms then you probably want to get worked up for IC. I know that it is easy to want to blame something for making you feel so bad, bacteria, yeasts, etc...but sometimes (maybe not in your case but it could) it is just IC. An inflammation of the bladder of unknown origin. Many believe that IC is an undiagnosed bacterial infection, and others feel that their IC started from a UTI and then the pain and frequency just stayed on afterwards. Maybe that is what happened to you?

[PlainJane]

Hi,

Thanks for your post. The ureaplasma was cultured a few months ago. I am trying the bladder retraining thing at the moment. My doctor said it is very important and I'm sure he's right. It is very hard to resist going to the bathroom every time I feel the urge to urinate -- and it's only the first day! Hopefully it will get easier not harder.

I will re-test for the ureaplasma when I am done this course of antibiotics. I will wait 3 weeks before doing the test and I'll make sure they do the correct test.

I am currently measuring my urine output. My bladder can hold upto one cup at the moment. Is that normal? Very little? I can't find any info about what is "normal"

Thanks!!

[massagedoula]

I had to look up on Google how many cc's one cup is. It is 236cc. CC is a common measurement that urologists and doctors use to measure urine output. There is a urine measuring device called a "hat" that sits on your toilet bowl. It is measured in both ccs and ounces and is quite useful if you are doing a voiding diary. See if your doctor has one...most urologists do, I have seen.

236cc is not a huge amount but it is by no means small. If I went everytime I felt the urge I would be going a lot less than 236cc. I usually make myself hold it a bit in bladder retraining-style. The absolute most I can hold is 500cc, but that gives me an about to cry pain. It is not often, and usually related to being stuck in traffic jams. A usual amount for me is 250-300cc, so I think that you are quite normal. I read a long time ago that the average person urinates about 1-1.5 cups at a time, so that is right in the range. My uro says slightly higher---300-400cc is normal.

Bladder retraining is a first step (along with diet and lifestyle changes) that most uros will have suspected IC patients try. I hope that it works for you.

If you do have IC, this message board is a wealth of info. It is very active and people are very nice and unjudgemental. Keep up posted about your progress with the antibiotics, and I hope very much that you don't have IC!

[PlainJane]

Hi,

Thank you so much for your post. Today has been a much better day in terms of my bladder and I feel much more rested today than I have in weeks (I think I only woke up twice last night to urinate which is new as I usually wake up 6-8 times).

Today I have been able to go three hours without urinating! I haven't been able to go that long since this whole thing started. I am hoping this is due to the antibiotics (really hoping!!). I don't want to jinx it. It seems every time I start feeling even a little better and tell soemone about it I start to feel worse the very next day.

I am in a much better mood today! Hope it lasts :)

[Katrina]

Oh, I am starting to really believe that saying things are improving can be a jinx, with me it is more of a "something improves something else gets worse or we add something new to the list" kind of problem. It is so hard to not share the good times...maybe if I never admit to anyone but my doctor the bad times???? well that might makes things more stressful. I give up...how to you cellebrate the good without jinxing it?

Ok, so I went on a rant there. Sorry. I hope you continue to have luck with antibiotics :ignore:

[PlainJane]

Hi Katrina,
I know what you mean about the feeling that we can jinx it. I just had to post about my day because my bladder hasn't been this good in almost 2 years. I hope it continues to improve with the antibiotics. Thanks for your post :)

[sami4]

My Gyno is now testing all of her bladder problem patients for Ureoplasm and mycoplasm (sp?). She said that not all antibiotics work for it Cipro is one that does. If you have a deep infection it can be hard to treat. The test is a positive culture. If your stupid doctor dont believe you have it after a culture you better get to another doctor. The fact antibiotics make it better is another clue.
Sammie

[PlainJane]

Hi,

Thank you for your post. I really don't understand how my doctor is in denial that I have this infection. I mean it was cultured. Sad thing is I have already switched doctors. The one I had before this one was even worse, if that give yous any idea about the quality of care I've been receiving!

I have scheduled a phone consultation with Dr.Toth for tomorrow morning. I think I spoke too soon about feeling better. My bladder was ok yesterday, today it was a complete nightmare, back to its usual self. I had to pee every 10 mins. this morning. Exhausting.

Thank you all for your posts and encouragement. It is greatly needed and appreciated.

[Katrina]

(((((((PainJane)))))))))) You poor girl. I hope torrow is a lot better. Keep us posted. I am so sorry. One thing I think I should mention could you have a yeast infection? Always be careful about that possibility when on an antibiotic and they cause huge flares! :grouphug: Feel better soon!

[sami4]

Dont let that doctor slide on his incompetent treatment of your Mycoplasm.
The handout I got at the doctors office about Mycoplasma, Ureaplasma and Urealyticum made it pretty clear that this stuff needs treatment and if these infections persist for months or weeks can become hard to cure and effect and damage nerves, joints and muscles. It also said 50% of women who present with urinary tract symptoms and IC symptoms such as burning, constant peeing, night time peeing, urgency and pain when bladder is full.
If you cant find a doctor who knows what do about this email me privately and let me know where you live, I may know someone in that area or at least I do know several good physicians here in Arizona that would do a phone consult.
My culture for mycoplasm was negative. I think a lot of my symptoms were the result of insufficient estrogen in the vaginal, UT area, overactive bladder which I am doing great on Enablex. I had to go to four different Gynos to find one that wasnt afraid to give me the dose of estrogen that I needed, which is considered higher than most women at menopause seem to get along with.
Sammie

[PlainJane]

Thank you all for your encouragement! I am exhausted so I will keep this message short. I spoke with Dr.Toth and I'm still waiting back to hear whether he thinks I should come in for testing. It would be worth it to me to travel all the way from Canada if it might help. I am feeling miserable. I would have nothing to lose. But I haven't heard back yet.

Take care and thanks again:)

[PlainJane]

I am going to see Dr.Toth soon. Maybe next month? I hope he will be able to help me :) I am sleeping a lot these days. Yesterday I slept 16 hours. I wake up every 2 hours to pee and have 15 partial awakenings (found that out at a sleep lab test) so I basically never get deep sleep.

Needless to say I hope to start feeling better.

Thank you all for your posts and support ! :)

[Katrina]

(((((hugs))))))) Good Luck with Dr Toth.

[copyeditor]

plain jane, your situation sounds a lot like mine. it is a long story, but to make it short ... mine began with a small amount of bacteria in the urine, not enough for a "major" infection they said. i went through several courses of antibiotics. did a search on "antibiotic-resistant UTI" and found enterococcus. urologist #3 cultured - surprise - enterococcus, but only a little. been running a low-grade fever (VERY CHARACTERISIC OF A UTI FOR ME) for over a year. there is not a soul in this world who could convince me that IC is not caused by bacteria. i think the bacteria has been there so long and is embedded so deep in my bladder that it will (a) recur when i'm under stress, i.e., when i have a cold, etc. (b) never be cured by "normal" doses of antibiotics.

those are my theories.

keep me posted and good luck.

[Katrina]

copyeditor, Maybe your IC is caused by bacteria. Not everyone with IC fits your story. There may be more than one cause.

[copyeditor]

i am aware that there are other theories; i was just giving mine.

i've gone a long time with doctors blowing me off and not listening, so i would hate for anyone over here to get offended over my opinions. i hope this doesn't sound rude or ugly, but a lot of people here seem to get defensive about the whole bacteria/antibiotic thing.

i think all of us here need all the support we can get. i just need ONE PLACE where i can say how i feel without fear of judgment, ya know?

[copyeditor]

p.s. no one seems to fit my story. i am the special one with all of the uncommon symptoms of every disease i have been blessed with!
:toilet:

[PlainJane]

i am aware that there are other theories; i was just giving mine.

i've gone a long time with doctors blowing me off and not listening, so i would hate for anyone over here to get offended over my opinions. i hope this doesn't sound rude or ugly, but a lot of people here seem to get defensive about the whole bacteria/antibiotic thing.

i think all of us here need all the support we can get. i just need ONE PLACE where i can say how i feel without fear of judgment, ya know?

copyeditor--

Have you checked out this yahoo group before? It's called gu_infections and it is for people who believe their IC is caused by bacterial infection
http://health.groups.yahoo.com/group/gu_infections/

I know what you mean about being dismissed by doctors (Oh! do I know what you mean!). I've been seeing doctors for the last nearly two years about this bladder problem. 98% of them said, "oh it's your bipolar! you're depressed." To which my response is always, "How does depression cause incontinence and no I'm not depressed". I think having bipolar disorder and all would qualify me to know when I am depressed. Like they know me better than I know myself. Yeah right, especially considering the appointments usually last under 10 mins (average 4-5).

I too think the cause of IC might be bacterial with emphasis on the MIGHT because truth be told I do not know what causes it (if I did I would tell everyone!) But, like you, I have theories based on my reading. The part that really messes with my head is when people say "IC is like the worst bladder infection you've ever had that never goes away." Also, based on my experiences I know how incompetent the majority of doctors are with this stuff. I went two urologists before finally being tested for ureaplasma (I might point out that the final doctor who diagnosed me was not a urologist but a chronic fatigue doctor.)

Here is another theory. IC isn't necessarily caused by a bacteria that is currently present. Could it be that the bacteria caused an infection and the infection went untreated for so long (see the part about incompetent doctors) that it somehow caused permanent changes in the bladder? I know this is a long shot. I have to tell you I am not a science student, can you tell? I am an English lit student (was 98% of the way done my degree when I got sick. Have 2 credits left....but I digress....)

I am so frustrated today. I thought my bladder was getting better but I am so wrong. I wake up every 1 to 2 hours at night to urinate. I am so sleep deprived I could just cry! Ok, I'm done with the self-pity now (honestly though with these problems I think we should be allowed to be self-pitying now and again!)

Thank you all for your posts and encouragement!

Erica :)

[Katrina]

Here is another theory. IC isn't necessarily caused by a bacteria that is currently present. Could it be that the bacteria caused an infection and the infection went untreated for so long (see the part about incompetent doctors) that it somehow caused permanent changes in the bladder? I know this is a long shot. I have to tell you I am not a science student, can you tell? I am an English lit student (was 98% of the way done my degree when I got sick. Have 2 credits left....but I digress....)



Erica, I think it is very possible that an infection has caused some permanent dammage to some of the IC patients. There are some that see IC as an injury...weather from surgery, some type of infection, other illnesses, diet or a mixture of those. We certainly know it takes a long time for the bladder to heal from things.
Also thanks a lot for sharing a link to that yahoo group! :)

[copyeditor]

isn't it true that most IC patients have suffered from chronic UTIs? or are there people out there with IC who have never had a bladder infection?

[PlainJane]

Hey copyeditor--

I do not recall ever having a UTI UNTIL I was diagnosed with the ureaplasma urealyticum. But then I haven't been properly diagnosed with IC so I really can't say. I guess I should leave it open for other people to answer. I am interested in hearing other people's experiences.

Erica

[Katrina]

Copeditor...many with IC have suffered from chronic UTI's but not all. Some patients have said they didn't even have one infection a year until all of the sudden boom...they seamed to have the worse one ever yet it was IC. Some patients had an abdomenal surgery or some other tramma to their pelis right before their IC symptoms started. Some have had chronic UTIs. Some have had it run in their family and feel they had IC forever. With all of that it seams to me that in at least some cases IC is an injurred bladder...one that has difficulty healing either from infections or a trama.

Anyway, many of those with IC at a young age (teens or 20's) had chronic UTI's ....that definatly seems to be a factor in some cases.

[massagedoula]

PJ,

I agree with your theory that a previous long-term infection may have cause permanent changes in my bladder which led to IC. I travelled a lot during my teens and early twenties. Sometimes I would think that I had a UTI, but I would be in a country with no medical access or that I did not speak the same language. I would drink cranberry juice and lots of water and usually the feeling would go away. Maybe the bacteria lived in me for a long time, and I didn't know it. I also had no health insurance until the age of 24, so I rarely went to the doctor. I was young and foolish...I have gotten documented UTIs a lot in the past. From the age of 15-19 I felt like I had a UTI every other week. I would sometimes take antibiotics and sometimes not. From the age of 20-25 I barely got a UTI, maybe 2 or 3 documented ones that whole time? Now that I have IC I have had no UTI's and I have had about 20 or more cultures, so I know that there is nothing there. But could the earlier diagnosed and undiagnosed UTIS have damaged my bladder? I think that it is the most plausable theory behind what I think caused MY IC (not all IC.) So while I don't think that bacteria that is currently present in the bladder causes IC, I do think that previous bacteria could have. Makes sense?

[marsi4]

Having left uti's untreated may have caused IC in some patients, I agree. I have had a problem with yeast since I was a teenager and never treated it. This problem still persists today but I'm treating it now. I believe also that untreated long-term yeast can irritate and damage tissue as well. Copyeditor I can sympathize with doctors blowing you off. Most of us have experienced that and worse. I had a doctor call security to have me leave the hospital room because he could find no other pathology besides my IC that I was diagnosed by my uro that I told him about and he was so rude, and insensitive. I was in severe pain and was desperate for help and I was so polite with him and well behaved and had gone to the ER to seek help. He didn't seem to care one bit if I was suffering and in despair. I was so afraid to go home in that state and begged him to hospitalize me for the night and relieve some of my pain. He completely ignored me and dismissed me. I have had some very inhuman interactions with some arrogant, and ignorant doctors who have no clue how painful this disease is.
This has happened to me a few times and I was made to feel ashamed and afraid to go to the hospital when I was in so much pain because I feared being mistreated, humiliated and not believed by such deranged doctors. I was treated like a criminal. These doctors should not be practicing. They cause more damage and pain to patients than good. Don't let these incompetent doctors dismiss your pain and symptoms. Keep seeing as many doctors as you need until you find one that will be compassionate and will do everything to help. There are good doctors as well who practice because they're caring people and want to help the ill. Hope you can receive the care that you deserve.

Marsi 4

[marsi4]

Plainejane how were you diagnosed with ureoplasma? Is this something that is present in the vaginal area only?

Marsi4

[Katrina]

Massagedoula, yes that made perfect sense :) Thanks for sharing Massagedoula and Marsi. Marsi, I believe that yeast can do the same kind of dammage bacteria can to the bladder...and can be harder to diagnose before the dammage is done in some cases. :grouphug: Frustrating! (to say the least!)

[PlainJane]

Plainejane how were you diagnosed with ureoplasma? Is this something that is present in the vaginal area only?

Marsi4

Hi,

It was diagnosed through a urine test. I am not sure if it is only present in the vaginal area. I don't know much about ureaplasma. Dr.Toth doesn't think the ureaplasma is causing my symptoms (neither do any of the other doctors I've seen). To be honest, I have no idea what is going on with my bladder.

My psychologist thinks I should apply for some type of disability but the problem is I'd have to find a doctor who believed my symptoms! They all seem to think I am being a whiner or doing this for attention. As if!

Dumb question but what do you guys all know about getting disability for IC? Is it possible?

Thanks,

Erica

[Katrina]

yes, it is possible to get disability for IC. There is much information on ICN and ICA that can help you with that. It normally takes a doctor saying you are disabled. You can also do a search here on the message board, I am sure there is more info than the links I gave you.
http://www.ichelp.com/Disability/EligibilityForSSAndSSIBenefits.html

http://www.ic-network.com/handbook/disability.html

[PlainJane]

yes, it is possible to get disability for IC. There is much information on ICN and ICA that can help you with that. It normally takes a doctor saying you are disabled. You can also do a search here on the message board, I am sure there is more info than the links I gave you.
http://www.ichelp.com/Disability/EligibilityForSSAndSSIBenefits.html

http://www.ic-network.com/handbook/disability.html


Thanks for the info.....whooops I should have said I'm in Canada. Sorry about that.

Erica

[copyeditor]

Having left uti's untreated may have caused IC in some patients, I agree. I have had a problem with yeast since I was a teenager and never treated it. This problem still persists today but I'm treating it now. I believe also that untreated long-term yeast can irritate and damage tissue as well. Copyeditor I can sympathize with doctors blowing you off. Most of us have experienced that and worse. I had a doctor call security to have me leave the hospital room because he could find no other pathology besides my IC that I was diagnosed by my uro that I told him about and he was so rude, and insensitive. I was in severe pain and was desperate for help and I was so polite with him and well behaved and had gone to the ER to seek help. He didn't seem to care one bit if I was suffering and in despair. I was so afraid to go home in that state and begged him to hospitalize me for the night and relieve some of my pain. He completely ignored me and dismissed me. I have had some very inhuman interactions with some arrogant, and ignorant doctors who have no clue how painful this disease is.
This has happened to me a few times and I was made to feel ashamed and afraid to go to the hospital when I was in so much pain because I feared being mistreated, humiliated and not believed by such deranged doctors. I was treated like a criminal. These doctors should not be practicing. They cause more damage and pain to patients than good. Don't let these incompetent doctors dismiss your pain and symptoms. Keep seeing as many doctors as you need until you find one that will be compassionate and will do everything to help. There are good doctors as well who practice because they're caring people and want to help the ill. Hope you can receive the care that you deserve.

Marsi 4

that is sooo horrible. i nearly cried reading your post. i'm sorry that happened to you. it also remids me of how insensitive bosses can be. my bosses think i'm a hypochandriac. they roll their eyes every time i have a doctor's appointment, and i quickly became the black sheep at my office because of all of my problems.

[PlainJane]

Well I finished the four weeks of azithromycin and doxycycline and I haven't noticed any improvement in my symptoms.

I slept so much today (18 or 19 hours total) and I am sooooooo tired.


Erica

[Katrina]

Sorry Erica, I so hope things improve. :grouphug:

[lili]

I took antibiotics continuisly for 2 1/2 years only to realize that it had no impact on my condition and really made me feel worse with side effects. The diet and prelief is the only thing that has made me feel better. However, my husband bought some Danactives, a yoghert drink which I take when I have to take antibiotics short term and it had made a HUGE difference. I hope this helps someone else.

My worst medical story is this, I was just at the beginning of a distension, breathing slowly to relax when the door OPENED! I jumped inches off the table. The person who interupted my test had a message, not for the dr but for his medical tech. I made sure the door was locked after this. This particular group of drs were consistantly able to bill me before I even got test results back. What is it with the medical community that they don't have to call with test results? What about e-mailing the results? We need a bill of rights for patients!

Don't lose hope. The more I take control of my health the better I am feeling and lately I have had periods of remission! I pray for this for all of you! Lili

[copyeditor]

i have a question about the ureaplasma urealyticum.

is this something they have to look for SPECIFICALLY in the culture, or do they just culture for any and all random bacteria? is there something special about this particular bacteria that i should know?

[PlainJane]

i have a question about the ureaplasma urealyticum.

is this something they have to look for SPECIFICALLY in the culture, or do they just culture for any and all random bacteria? is there something special about this particular bacteria that i should know?

Ureaplasma isn't something docs routinely look for. It won't show up on a routine culture test because the bacteria lacks a cell wall. These mycoplasma bacteria are some of the smallest bacteria out there!

I went to see a doctor at the chronic fatigue clinic and she is the one who looked for it because some of her patients also have unexplained urinary symptoms and also because mycoplasma infections can be associated with fatigue. I saw 3 urologists who did not look for ureaplasma urealyticum.

I'm not sure if you've read this article so I'll post it here. I got this article from the GU Yahoo group http://rain-tree.com/myco.htm

Erica

[PlainJane]

I took antibiotics continuisly for 2 1/2 years only to realize that it had no impact on my condition and really made me feel worse with side effects. The diet and prelief is the only thing that has made me feel better. However, my husband bought some Danactives, a yoghert drink which I take when I have to take antibiotics short term and it had made a HUGE difference. I hope this helps someone else.

My worst medical story is this, I was just at the beginning of a distension, breathing slowly to relax when the door OPENED! I jumped inches off the table. The person who interupted my test had a message, not for the dr but for his medical tech. I made sure the door was locked after this. This particular group of drs were consistantly able to bill me before I even got test results back. What is it with the medical community that they don't have to call with test results? What about e-mailing the results? We need a bill of rights for patients!

Don't lose hope. The more I take control of my health the better I am feeling and lately I have had periods of remission! I pray for this for all of you! Lili

Lili,

Sorry to hear about your terrible distension experience. I'm glad you've found some relief and periods of remission. Thank you for your support.

Erica

[copyeditor]

Ureaplasma isn't something docs routinely look for. It won't show up on a routine culture test because the bacteria lacks a cell wall. These mycoplasma bacteria are some of the smallest bacteria out there!

I went to see a doctor at the chronic fatigue clinic and she is the one who looked for it because some of her patients also have unexplained urinary symptoms and also because mycoplasma infections can be associated with fatigue. I saw 3 urologists who did not look for ureaplasma urealyticum.

I'm not sure if you've read this article so I'll post it here. I got this article from the GU Yahoo group http://rain-tree.com/myco.htm

Erica

what kind of dr. cultured this for you? what kind of culture was used?

[PlainJane]

It was cultured by a chronic fatigue doctor. She is medical doctor specializing in fatigue but not urinary problems. I did a urine test. It wasn't a mid-stream test though it was the first part of the urine stream and I had to provide 4 samples. The urine tests I've done for the urologists were always midstream and only one sample. What about you?

Erica

[copyeditor]

i have never had anything done that thorough. it is always the same. small amount of bacteria. only one doctor let it sit long enough to let something grow, and he found enterococcus. as far as i know they never checked for anything unusual. they pretty much rush me out of the door because i am the wierdo problem patient with all the questions. i have been told by a handful of doctors to "look elsewhere" about the low-grade fever. (WHERE???) i don't even push anything anymore because it's not worth it.

[PlainJane]

i have never had anything done that thorough. it is always the same. small amount of bacteria. only one doctor let it sit long enough to let something grow, and he found enterococcus. as far as i know they never checked for anything unusual. they pretty much rush me out of the door because i am the wierdo problem patient with all the questions. i have been told by a handful of doctors to "look elsewhere" about the low-grade fever. (WHERE???) i don't even push anything anymore because it's not worth it.


I think it is worth it. I mean you are sick you need answers. Is there a chronic fatigue doctor in your area? They are the most thorough, in my experience. The one I see is just great. She doesn't give me any b.s. or accuse me of anything (unlike other docs I've seen). I really think it would be worth it to look into a chronic fatigue doctor or at the very least someone who will test for mycoplasma infections.

Erica

[Michelle B]

My experience/opinion: I've had IC for a long time and have gone through a LOT of bad medical 'care' and also some patients pushing their own viewpoints, which is very annoying when you're desperate. It's awful to be in severe, chronic pain, wait 2 months to see a doctor, then not be treated with care and competence. It's also awful to try to get support from others and be told that the cause of IC is such-and-such and this is what you need to do to cure it or make all the symptoms go away (I'm not referring to any of the posts on this website). I tried antibiotics, some long term, and had some benefit but it never lasted. I think I have a weak bladder wall caused by whatever IC does to give you a weak bladder wall, and this has predisposed me to infections. It seems to run in the family. What we need, of course, is for the researchers to figure out what is really causing this nightmare disease, so the treatments can become more standard and the doctors (especially the bad ones) can stop guessing or telling you you're nuts, and treat you as they're paid to do. In the meanwhile, before seeing a doctor, I ask around and check on-line medical databases to find out how much experience the doctor has, and whether the doctor has any notices/orders on file regarding misconduct. This hasn't always resulted in success, but it doesn't hurt to have the info. I don't know about mycoplasma but I'd suggest some research on the web and perhaps at the library. You might also want to find out which labs near you test for mycoplasma and which of your doctors use those labs.

[PlainJane]

My experience/opinion: I've had IC for a long time and have gone through a LOT of bad medical 'care' and also some patients pushing their own viewpoints, which is very annoying when you're desperate. It's awful to be in severe, chronic pain, wait 2 months to see a doctor, then not be treated with care and competence. It's also awful to try to get support from others and be told that the cause of IC is such-and-such and this is what you need to do to cure it or make all the symptoms go away (I'm not referring to any of the posts on this website). I tried antibiotics, some long term, and had some benefit but it never lasted. I think I have a weak bladder wall caused by whatever IC does to give you a weak bladder wall, and this has predisposed me to infections. It seems to run in the family. What we need, of course, is for the researchers to figure out what is really causing this nightmare disease, so the treatments can become more standard and the doctors (especially the bad ones) can stop guessing or telling you you're nuts, and treat you as they're paid to do. In the meanwhile, before seeing a doctor, I ask around and check on-line medical databases to find out how much experience the doctor has, and whether the doctor has any notices/orders on file regarding misconduct. This hasn't always resulted in success, but it doesn't hurt to have the info. I don't know about mycoplasma but I'd suggest some research on the web and perhaps at the library. You might also want to find out which labs near you test for mycoplasma and which of your doctors use those labs.

Michelle-- very good advice, thanks. I have had some horrible medical "care" as well and I can really relate to the frustration. Some doctors are so insensitive I wonder how they even function in their personal lives. Not a pretty thought.

Erica

[copyeditor]

I think it is worth it. I mean you are sick you need answers. Is there a chronic fatigue doctor in your area? They are the most thorough, in my experience. The one I see is just great. She doesn't give me any b.s. or accuse me of anything (unlike other docs I've seen). I really think it would be worth it to look into a chronic fatigue doctor or at the very least someone who will test for mycoplasma infections.

Erica

i don't know what i'm going to do at this point. i've seen a GP, 3 gynos, 3 urologists, an immunologist, 2 holistic doctors -- even an infectious disease specialist (who did not think 99 was a fever). none of them have addressed my fever. they all question whether it is a fever at all, even though i've run at 97 my whole life and suddenly it changed to 99 at age 32 (oroginally accompanied by a true bladder infection and a "sick" feeling, not just body temp).

i saw a few holistic M.D.s who have told me everything from get rid of the metal fillings in your teeth to go on a yeast diet. seems all they preach is yeast. i'm not saying yeast is not a problem, but it is frustrating when you go in for one thing and they circle the globe wanting to address everything BUT bladder/fever. then they say "work on the whole self." maybe i am just too impatient to do that. i want real science addressing the real problem, not "try this and that to see if it works." there is a lot of time, energy and money involved in trying things with no guarantee that they will work or that they are even addressing you true problems to begin with.

i just sent off some saliva tests the other day for adrenals, thyroid and hormone. i had reservations even writing the checks, as i have no idea whether saliva tests are valid. i remember a news story from not too long ago on a study in which herbal/natural remedies didn't help the participants. there is so much info out there it all becomes very confusing.

all i know is MY body. i know that MY body gets a low-grade fever with a UTI. i know that has happened to MY body consistently. i know that when this fever came on a year and a half ago, i had a REAL UTI. my thought is that the antibiotics cured only some of the infection and the rest is a lingering infection that is so low-grade it cannot be detected. of course, i am sure someone will take offense to that or call me "ignorant" because of my beliefs, but i know MY body and how it responds to different things.

i'm sorry, but i just don't buy some of the stuff doctors give us. even this condition called IC is quesitonable to me. it's just too hard for me to swallow all of their explanations when i'm still running a fever. it seems OBVIOUS to me that i have an infection. even this site has info on all the different pathogens found in the bladders of IC patients. i found a site the other day that said infection can cause the glomurations (sp). so even the pictures of my bladder are not enough for me.

just recently, they discovered that there is a particular bacteria that causes stomach ulcers. before, they blamed it on stress. i think it's funny how many diseases doctors tell us are brought on by stress. they used to call women who suffer from PMS crazy. on one hand it is a relief to know there is a name for what we suffer through. on the other hand, being lumped into these categories makes it easy for the doctors to blow us off. you have chronic fatigue, there isn't much we can do. you have IC, there isn't much we can do. you have fibromyalgia, there isn't much we can do. don't get me wrong; i am not saying these aren't real conditions. i'm saying that once you are diagnosed with them, doctors stop digging for answers.


:toilet:

[PlainJane]

Copyeditor,

I totally agree with you and I'm definitely not going to call you ignorant. I think you are totally right that chronic fatigue and IC diagnoses make it easy for doctors to blow off patients. I would bet that there are doctors out there who don't know what's wrong with a patient's bladder so they say, "Oh, it's IC." This is part of the reason I DO NOT want an IC diagnosis or chronic fatigue diagnosis on my chart. When a lazy and/or uninterested doctor sees a diagnosis on the chart and can't figure out what's wrong he will usually just agree with the previous doctor's diagnosis on your chart no matter how little sense it makes.

I've been going to doctors for almost 2 years now and quite a number of them have said that my bladder problems are caused by depression (nevermind the fact that I'm not depressed). They even went so far as to accuse me of faking incontinence because they couldn't demonstrate it on a urodynamics test. I have a diagnosis of bipolar that's on chart so it makes it really easy for them to say that my problems are psychological. Of course, depression doesn't cause incontinence but it doesn't matter to them. They could really care less about me, I'm sure. I think I am much in the same position as you having been labelled a "difficult" patient. Really all a "difficult" patient is is a problem the doctor can't figure out. It is not a reflection of the patient at all, it's a reflection of the doctor and his attitude problem.

Anyway, I've seen a lot of doctors too. I've seen 4 urologists (next week I see a uro-gynecologist), a gynecologist, a neurologist, a homeopath, 3 naturopaths, 3 GPs, and even a psychiatrist so I'd have someone to confirm that it isn't depression. If anyone ever says to me it's depression I'll just hand them the psych's card and tell them I'm not dealing with these questions anymore, I'm sick of it. The ONLY doctor who was ever able to figure out ANYTHING at all was the chronic fatigue doctor who diagnosed my bladder infection, among other problems. Unfortunately, the chronic fatigue clinic doesn't TREAT the problems they find they refer you to your GP for treatment. My GP doesn't even believe my urinary symptoms are caused by an infection so you can imagine where that leaves me. The system is totally messed up.

The problem is you haven't seen the RIGHT doctor yet. I wish that you could afford to go see Dr.Toth or someone else who specializes in thorough testing. Do you think you can afford the phone consultation visit? It is much cheaper than the testing and treatment and maybe he can give you some ideas. Maybe if you tell him you can't afford the testing he can give you some other ideas of something that might help. Or maybe you could call Ruth **** (sp?) that the posters are always talking about on the GU board?

I have absolutely lost faith in the medical system as well. I now know how ignorant doctors can be and it's very scary. As well, the illusion that they are just "there to help" is also totally destroyed. I hope I can get better from this bladder problem somehow and just try my best to keep healthy because lord knows I don't want to have to deal with the medical profession again. I've dealt with them MORE than enough, as have you and most everyone on this board.

Have you ever printed off some info. to bring to any of these doctors? Sometimes it can help, if you find a doctor who is open minded. Unfortunately too often when you try to teach them anything their egos get in the way. Anyway, maybe if you printed off information about mycoplasma infections and testing you might get somewhere or am I totally being naive? The thing is you need to find a good lab. I think they know about where to find good labs on the GU board.

Take care,

Erica

[Katrina]

I one thing I definatly believe is that we have isntincts about our own bodies...and we know our own body better than many doctors. I hope we all can get the help and answers we need.

[PlainJane]

Hi Katrina,

I'll have to let you know how my appointment with Dr.Toth goes. It's in 10 days. Eek! I'm nervous already.

Erica

[Cheries]

I would like to get cultured for this organism. Is it a routine test?

[PlainJane]

I would like to get cultured for this organism. Is it a routine test?

It is most definitely not routinely cultured. Go for it but be sure you find a good lab, most labs can't culture this bacteria.
Let me know how it goes. Good luck.

Erica

[Katrina]

Good luck Erica!

[PlainJane]

Thanks Katrina! :)

[PlainJane]

Cheries,

How did your mycoplasma test go? I got re-tested for mycoplasma and it was negative so I don't think it was causing my symptoms. However, I am glad to know that that bug is out of my body. I am going to get re-tested in a few months time for mycoplasma to make sure it's still gone.

[PlainJane]

I am wondering if anyone else here has been treated for ureaplasma urealyticum? What antibiotics did you take? How long did it take to get rid of the ureaplasma?

Thanks. :)

[PlainJane]

I feel like I should update my thread! So the ureaplasma and chlamydia infections are gone and I still have symptoms. Recently I found out through a broth culture done by United Medical lab that I have group d streptococci bladder infection. I also tested positive for Lyme through Bowen research. I am trying to get in to see a Lyme doctor. I am going to start treatment for the group d infection soon.

I am aware of the controversy surrounding Lyme diagnosis however I am not aware of the controversy surrounding Broth culture. Why are some people so skeptical of broth culture testing? Just wondering.

Thanks

Erica