Apr 26 2006, 11:34 AM
So I talked to that nurse practitioner today and I am hopeful. She is going to investigate me for Lyme disease and she's going to get me to do a broth culture urine test. She's also going to test my blood to measure my vitamin/mineral levels. She is sending me two supplements to start on and she has a whole bunch of other ideas for me to try.
One thing she mentioned was the "Eat Right 4 You Type" diet book. I have to find out what blood type I am. I ordered the book from the library.
Finally I feel like I am getting somwhere. She is very thorough! It doesn't look likely that the urinary tract infections were causing my urinary symptoms. She said just based on my symptoms (fatigue, urinary, TMJ, sleep problems, past history of depression/bipolar) that she definitely thinks I should be tested for Lyme disease. Lyme disease can cause all of those symptoms.
One of the most encouraging things she told me was she has a patient who was sick for 27 years and is now better after 2 years of treatment.
YAY!! I am so encouraged right now! Now I just have to wait for the test kits to arrive in the mail and get them done. This nurse is so thorough. I feel like I am in good hands. This is how I felt when I saw that doctor in Neww York. Both of them really know what they are doing.
Apr 26 2006, 01:59 PM
wow, suffering. that's great!! so what does she think will cure your IC? will eating right for your blood type help that? what does she think causes it? My doc says electrolytes in urine are to blame b/c they irritate the bladder in IC patients. So are you going back to get tested for Lyme? What kit are you ordering? I'm sooo excited for you! Maybe I will check out that book too. We can start together and see if it works. Maybe I'll lose some weight in the process. ha! I'm only ten or so pounds overweight. no big deal. well, I'm off to drink water! Good luck and keep me posted!!!!
Apr 26 2006, 06:30 PM
Hi Urethritis: She's going to mail me the kits and I have to overnight them all to three different labs. By the sounds of it a lot of cases of IC are related to Lyme. She knows of a lot of things to treat Lyme and also to help re-build the bladder wall. She is mailing me two supplements to start on.
I definitely need to lose weight. I gained a lot of weight before I got sick and haven't been able to lose it because of the fatigue. All in all it's not my biggest problem but I am looking forward to losing the weight.
The kits she has ordered for me are to test for Lyme, to test my vitamin-mineral levels and one urine test called a broth culture. I'm not sure if you've ever had one of these urine tests done. It's done by United Medical lab. If you are interested you can look them up on the internet. The thing about these tests are that they are left to sit for a lot longer than the standard agar plate test (which I think almost all doctors use. I can't think of one doc I know of who uses broth culture). Anyway, if you are looking for an excellent urine test this is probably the one.
What did your doc say exactly about elecrolytes in the urine? How do they treat this?
I will update you on anything/everything I learn as I go.
Apr 26 2006, 06:48 PM
he said that potassium is the cause of the pain somehow. I still don't get it. So can I get the tesing kit for a broth culture? how much does it cost? what types of supplements is she sending you? gosh I really hope your tests come up w/ some results. I'm having a particularly bad flare right now. It was bad last night too. ttyl
Apr 26 2006, 08:23 PM
Hi Urethritis: Yeah you can order a broth culture test. It's 250$. I think it has helped a lot of people find infections no doctor could find.
She is sending me a supplement that is good for the bladder wall and another one for my adrenal glands. I will post more about them when they arrive in the mail.
Sorry to hear you're in a flare! This bladder stuff really sucks (what an understatement). I am getting very little sleep these days. I wake up to pee every half hour to an hour. I am exhausted.
Apr 26 2006, 08:38 PM
So your uro suggests the pain is from potassium but does he suggest any way of treating it?
Apr 26 2006, 09:54 PM
my primary care physician said that. he said there is no way to cure it. just that there are things to help build up the bladder lining (Elmiron).
Apr 26 2006, 10:18 PM
That is what the nurse does too (well part of it anyway) is help build up the bladder lining but with supplements rather than Elmiron.
Apparently Lyme disease makes you more vulnerable to infection which could explain why I had three urinary tract bugs. Even though it doesn't seem totally likely that the chlamydia was causing my symptoms I am still very relieved to be rid of that bug and the ureaplasma one too. I still have to talk to the doctor about the actinomyces israelli bug that is still there and what that means.
Do you think you might look into a broth culture?
Apr 26 2006, 11:33 PM
maybe. I really don't know. I'll ask my urologist to do one but I brought it up last time and he sort-of ignored me. I don't know about that guy. so what type of supplements did she recommend?
Apr 27 2006, 08:48 AM
One is called Adreno plus I think. It's for my adrenal glands because I told her I have had 2 low cortisol readings (and borderline low thyroid). The other one is a supplement for my bladder wall. I will let you know more about them when I get them which should be early next week I'm guessing.
I don't know if urologists are familiar with broth cultures. At least my urologists weren't. Unfortunately they usually do the cheapest test which is usually the 48 hour agar plate test. This test is considered the gold standard as I'm sure you know (and has been for 50 years). This test is very outdated. It's good for detecting things like e.coli infections but anything else it's not good at really. There are much better tests obviously but they cost more and take longer to do.
I hate it when doctors blow me off. I've gone through a lot of that over the past two years. It's very unpleasant.
Apr 27 2006, 03:03 PM
Urethritis: do you have any idea what might be causing your flare? It sounds miserable. I know of only two things that cause me to flare: caffeine and hormones! I notice the week before my period my bladder is just such a nightmare and I rarely have caffeine (maybe once a month?) and it irritates my bladder a bit but not much.
Apr 28 2006, 12:59 PM
I don't drink caffeine but around my period (two weeks before and 3 to 4 days after) my bladder rages 24/7.
Apr 28 2006, 01:12 PM
I wonder what the connection is with the period. i have heard a lot of people say that their bladder gets a lot worse before their period too and after for a while. Hmmm, very confusing. Very frustrating. How are you feeling today?
Apr 28 2006, 03:13 PM
oh, it's raging today. it must be PMS time again. I'm guzzling the water. I've started an exercize program hoping that would help but it hasn't yet. how 'bout you? have you started your blood type died yet? i found a website that has a bunch of recipes for that diet. http://www.dadamo.com/typebase4/recipelister4.cgi?a
hope that helps. I'm going to try it soon.
Apr 28 2006, 07:34 PM
Hey Urethritis: Sorry to hear your bladder problem is raging today. I haven't started the blood type diet. I first have to find out what blood type I am. I also haven't received the book from the library yet. I am definitely going to give it a try though! Thanks for the link! I hope you start feeling better soon.
Apr 30 2006, 08:08 PM
hey suffering. my bladder is actually not so bad today. have you tried aloe vera juice yet? i ordered some yesterday. it's supposed to be good for ic. I've probably asked you that before. so how's it going for you??
May 1 2006, 02:00 AM
Urethritis: glad to hear your bladder isn't too bad today. I haven't tried aloe very juice yet. What is it supposed to do exactly?
My bladder is pretty bad lately. I was waking up every half hour to one hour last night. My sleep is terrible. I am incredily sick of my life being ruled by my bladder.
May 1 2006, 01:35 PM
I know how you feel. I find myself in the deepest and most blissful sleep and then BAM! my bladder wakes me up. I'm half-asleep going to the bathroom.
well, aloe is supposed to have curative properties and it is supposed to heal the irritation I think. I'll let you know how it works after I try it. It comes in juice or capsules and the juice is supposed to taste gross but it's cheaper so I bought it anyway.
May 1 2006, 05:35 PM
Yeah the sleep problems are horrrible. I am going to get the test kits tomorrow so I'm going to get them done as soon as possible. One of the results is available the same day and the other ones take 1-2 weeks so hopefully I should know something soon enough.
Let me know how the aloe vera drink goes. I'll let you know about the supplements when I get them tomorrow.
May 3 2006, 07:57 PM
suffering, I received my supplements today including aloe vera. I also got some coral calcium and a super antioxidant. right now my bladder is raging. I find that when I'm exercizing it feels okay but afterwards it hurts. maybe b/c I'm distracted at the time? anyway, I'm trying to do more exercizing lately. I need to get some fruit juice to go w/ my aloe vera. I hear it tastes really gross so I'm not looking forward to drinking it. and the coral calcium is supposed to be good for IC according to someone on the IC network who took it and was cured of IC. so, I'm hopeful even though nothing else has worked (probiotics, MSM, quercetin, tea tree oil, etc.) ttyl
May 4 2006, 08:13 AM
urethritis, sorry to hear your bladder is so bad lately. Hopefully the aloe vera and calcium will help. I guess the bad taste of the aloe is a small price to pay if it helps.
I am not able to get my tests done until this coming Monday. The supplements arrived with the test kits yesterday. The one that is supposed to be good for the bladder is called "PRO-C". It is 500 mgs of buffered vitaminc C. 30 mg of BioVin and grage extract as well it has glutationed, NAC< Lipoic Acid, Selenium plus other supportive nutrients.
The other supplement is called "Adreno-Plus". It's for my adrenal glands.
Lately I feel like I am running on no sleep. My bladder is not getting any better. Somehow I guess all this time I was hoping it would just spontaneously get better but no luck so far.
Good luck with the aloe, let me know how it goes!
May 4 2006, 11:26 AM
okay, good luck w/ your supplements. I'm trying the aloe today. maybe there is hope for us yet between the both of us trying stuff!
May 5 2006, 03:46 PM
I just started the supplements. I am doing my Lyme test and the other blood test this Monday. I should find out the results of the Lyme test this coming week. I am also going to do the Broth culture this week.
Uhh I just re-read my Thursday post to you. Sorry for the typos. I was in kind of a rush!
I'm excited for the tests. Well maybe excited isn't the right word but I hope I find something out is what I mean. Then I will be able to change my user name to something cheerful not "suffering". Until then I think my user name is appropriate. Arrgh stupid bladder!
May 5 2006, 08:36 PM
I was reading about Lyme on the IC network. you may be on the right track. i sure hope so. well, I do not recommend aloe b/c it hurt my stomach (I think) plus it didn't work. BUT, the coral calcium was a hit. I took it and six hours later I still didn't have to pee and no burning. I'm hoping that wasn't a fluke. I'll try it again today. I've been having stomach pains lately and I can't figure out exactly what it is (maybe an ulcer). anyway, good luck and ttyl
May 5 2006, 08:50 PM
hi urethritis, I hope it wasn't a fluke either! Let me know how it goes when you try it again.
I'll keep you posted on the Lyme test
May 7 2006, 08:40 PM
I have been keeping track of how many times I pee per day. Yesterday it was 17 times during the day and I got up 6 times at night to pee. Blah!
May 7 2006, 09:40 PM
wow. I'm still in pretty bad pain. the calcium makes it better for a little while but it soon returns. I think I'm going to give up the fight and let it go away on it's own one day. have you tested for lyme yet?
May 8 2006, 02:20 PM
don't give up! no, i haven't been tested for lyme yet. I'm going in a few minutes to get tested and then have to go to FedEx to get it shipped.
I am kind of feeling the same way as you just hoping it will go away on its own. I can't give up because it's ruined my life and I hope you don't give up either.
Yesterday I had the freakiest pain. It was sort of like menstrual cramps, came on suddenly and the pain radiated down my inner thighs and I was also shivery. The pain only lasted five minutes then I started passing these big blood clots (was that too much information? ha). What the hell is going on with my body? My period isn't due for over 10 days. I am so worried. I feel like it's all related but so far don't have any answers.
Don't give up! You can still get better (This is the pep talk I am giving myself every hour right now.) I just keep telling myself, "I'm going to get better, I'm going to get better."
It's pretty bad these days as I'm sure you can tell. What a frigging nightmare.
May 8 2006, 03:59 PM
that's crazy, suffering. have you seen a doc yet for that? that sounds serious. will you run down a list of your symptoms for me? My stomach has been burning a lot lately. From the very pit of my stomach thru my bowels. it's like a deep aching burning sensation. It lasts for hours and it's very painful. I don't know if I have an ulcer or what's going on. anyway, last night was horrible. I was up all night peeing and then the burning was horrendous. I just don't know anymore. This month is the sixth month that I've had this and I don't see an end in sight. I can't believe one little infection did this to me. I'm going back to the same hack, I mean urologist, that I saw last time. I'm sure he has no news for me. My doc was even talking about removing my bladder!!! What? Can't we try something else first? I refuse to try anything like Elmiron or other chemicals. I want to go natural. I'm going to make an appt. w/ a naturopath soon. anyway, I'm trying to have a life despite my problems but it's hard. I'll ttyl and keep telling yourself that and I will too.
May 9 2006, 02:20 PM
I typed out a reply to you but it got lost...grrrr... I will respond fully later when I am not so wiped (It's been a bad day!). I can't believe your doctor suggested bladder removal!!! That is so extreme. Will post more later.
May 10 2006, 01:39 AM
I haven't been to a doctor about that weird pain. I really don't have a local doctor I can talk to or trust. I did email that ob-gyn in NYC about it because he is one of the only doctors I trust.
Sorry to hear your stomach is bothering you. The only burning I've had that sounds somewhat similar to that was from the Doxycycline. That really did a number on my stomach and I had trouble sleeping because it was burning.
I can relate to the feeling that this bladder problem is chronic. I'm sorry you've been suffering for so long with it. I have had these symptoms for two years and it definitely feels chronic. I keep having to give myself pep talks otherwise I get really down about it. I honestly don't think either of our problems is necessarily chronic we just haven't found the answer yet. Most doctors give up too easily on difficult cases like ours and it's easy for them to give up because they aren't the ones suffering. They have the option of giving up and so I guess they assume that we have that option too. It never ceases to amaze me how doctors can just say "well you'll have to learn to live with it"....duh, if I could have learned to live with it I would be LIVING my life already. You really don't need to be a genius to go into medicine, that's what so many of my doctor's appointments have reminded me.
I think you are wise to go w/naturopathy. Bladder removal? What is this doctor talking about? That's ridiculous. BLAH! Enough doctor talk. I really am sick of them.
My list of symptoms:
-frequency (upwards of 30 times/day).
-borderline low thyroid
-low vitamin C (why all these low vitamins when I take more vitamins than anyone I know who knows??)
-Nocturia (wake up to pee at least 6-8 times every night sometimes much more)
-unrefreshing sleep (did a sleep lab that found I have 17 partial awakenings every hour).
-VERY slow to heal cuts
Those are all the symptoms I can think of right now... I'm sure I missed something.
What are your symptoms?
Take care and don't lose hope please!
May 10 2006, 01:23 PM
I can't believe that the doctors can't put your symptoms together into a coherent diagnosis. I'm going back to the doc tomorrow. I briefly thought about cancelling the appt. but I'm going to go anyways. My symptoms are:
burning in my bladder all the time
burning in my stomach
I really don't have the frequency (thank god). I truly think that is the worst symptom to have. I had it as a child. In kindergarten I had to go every five to ten minutes. I had a special pass I could just leave class whenever. I felt like a freak and started resenting myself. I would punch myself in the bladder all the time b/c I was so sick of my problem. It really tore my family apart. I had bloody urine and severe burning all the time as a child. I missed months of school. And now it's back. I wish I knew what made it go away in the first place. Well, it never actally went away 100%. but it was manageable. I'll never forget my dad sitting me down as a child and asking me if I was making up my symptoms. Because no doctor could diagnose it. Blech, I hate docs too.
May 10 2006, 11:56 PM
I am not surprised my doctors haven't been able to put it together. I remember sitting in the waiting room at these urology appointments and I was always the only person there under 65 (and I was usually the only female). I always had the feeling I was in the wrong place. I just don't think most urologists have a damn clue about what to do with a young female like myself who has these symptoms. They are used to doing cystoscopy tests, handing out overactive bladder meds, working with cancer and older men with prostate problems. Not one of them mentioned Lyme disease or anything else that could be causing my symptoms (other than you know psychological factors). Once they couldn't figure it out instantly they were totally disinterested in my situation. They wanted to get back to their waiting rooms of old men with prostate problems. I am now much more realistic about what urology deals with/ who it is capable of helping. I should be hearing back about my lyme test soon enough so maybe that will give me some idea what I am dealing with.
I'm sorry to hear you had these symptoms even as a child! That must have been horrible. My urinary/sleep problems symptoms started in the winter of 2003 and lasted until some time that summer then just went away (thankfully!). Then I went through a period of severe stress in the fall of 2003 and the symptoms came back in early spring of 2004 and have been here ever since. Apparently Lyme disease symptoms can come and go (incl. urinary symptoms) so maybe that really is what I am dealing with. Lyme can also cause low potassium and I have that as well. It is weird too that your symptoms went away so long (or at least to a manageable level) then come back suddenly.
I hope your appointment goes well. Keep me posted, I will let you know what I find out about the Lyme test, should be any time now.
May 11 2006, 10:45 AM
suffering, I felt the EXACT same way at urologist appointments. I would be the only female and the only young person and the same thoughts would be running thru my head. and, yes, if the doc couldn't diagnose he was quick to rush me out of there.
Well, I hope you have Lyme disease suffering!! ha ha. that sounds so bad but I really do hope you get a diagnosis that is not IC. I think I have IC. I can't be sure but I don't know what else it would be. Well, off to drink water. take care.
May 11 2006, 10:58 AM
Urethritis, I hope I have Lyme disease too sort of! I have been reading about treatments for Lyme and it looks like a long frustrating process. But it would be such a relief to have a name for this.
Do you think you are going to do a broth culture? I still haven't gotten mine done yet I am going to do it early next weeks. I think you might find it helpful......or you could call this nurse I am working with, seriously she really might be able to help you she has helped a lot of people. Let me know if you want her contact info.
May 11 2006, 11:12 AM
I will ask my uro to give me a broth. I re-scheduled my appt. for next week b/c I have family coming today. well, last night was a nightmare. I was up peeing all night and the burning is really bad. sure, give me her contact info. do you have an email for her? that would be great. thanks.
May 11 2006, 03:25 PM
I am frustrated. The lyme people called to say they didn't get my symptom/consent form. I swear I tripled checked it all when I sent it fedex but they didn't get the form so they can't give me the results. I need to get a copy of the form thru the mail cause i don't have a fax. ugh this will take a week I'm sure to get the results.
Here is her contact info. I copied this from the Lyme site here is the message about Ruth:
Long time Interstitial Cystitis patient advocate, researcher, and former IC patient, Ruth Kriz, has opened her private practice in Washington, DC. To make an appointment, please call 202-714-2415 or email her at firstname.lastname@example.org
. As a Nurse Practitioner, trained in functional medicine, both traditional and alternative treatment modalities are utilized to identify causative agents and triggers, address contributing factors, and rebuild damaged tissues. Associated conditions of vulvadynia, irritable bowel, fibromyalgia, and chronic fatigue will also be treated. Her office is 1/2 block from the Woodley Park Metro station at 2604 Connecticut Ave, NW.
"I do phone consultations. 60-90 min - $150.00; 45-60 min - $105.00; 30-45 min - $75.00; and 15-30 min $45.00. For an initial consult, it usually takes 60-90 minutes since most IC histories are complex. I am happy to advise you concerning tests needed, nutritional supplements which are helpful for rebuilding the bladder wall, and medications if indicated. You can either email me or phone me about setting up a phone appointment if you want to go that route. Hope I can be of help to you."
Let me know how that appointment goes. Sorry to hear your bladder is so bad lately. Mine was a bit better for 2 days but it's back to urgency for me. I just came back from an appointment and was running to the washroom even though I'd been to the washroom less than an hour prior. This SUCKS. I am disappointed I won't have the Lyme test results this week. Even though I triple checke to make sure the form was there it could totally be my fault cause I am so tired I make so many mistakes these days. I could've sworn I SAW the form go in. I am anxious to get my results does it show?
Take care. Have fun at your family thing today.
May 11 2006, 11:28 PM
that sucks, suffering. I'm sorry to hear that. maybe it got lost somewhere? I'll have to save up some cash to talk to the nurse. I'm sure it's worth it, though. did you do anything different for those two days that you can remember when your bladder wasn't so bad? I have to run but I'll ttyl.
May 12 2006, 04:18 AM
I don't think I did anything differently. My bladder is back to being a pain now
May 12 2006, 09:21 AM
so is mine. actually, last night wasn't all that bad but it's started up again this morning. hope you feel better.
May 14 2006, 08:31 PM
My bladder is driving me Insane!!! I couldn't fall asleep for 2 hours today because it was so irritated and then I couldn't even sleep more than an hour because it was so irritated.
May 14 2006, 09:26 PM
that's terrible, suffering. does drinking water help at all? sometimes I have to get out and do stuff to distract myself from it. right now my stomach is horrible. I have bad IBS and right now I have diarrhea and severe stomach cramps. my bladder was bad the last two nights too. I need to start my period and then maybe it won't be so bad. I'm feelin' for you.
May 15 2006, 12:45 PM
My bladder is a nightmare. I usually drink 2 litres of water per day. I don't think it helps. I'm sorry to hear your stomach is so painful.
May 16 2006, 10:00 AM
my bladder is a nightmare too. I'm feelin' ya.
May 17 2006, 09:46 PM
Grr..... I've gone so long without one ( for me thats about 2 months) and i freaking get one today. it hurts. What do ya know... .i stop chugging water 24/7 and i get one. damn damn damn
May 18 2006, 11:53 AM
Koala: Sorry to hear you have another UTI! It sounds very painful and frustrating. I hope you feel better soon.
Urethritis: I just found out today that my Lyme test was positive. It was actually a 1:128 which means they diluted the blood 128 times and the bacteria still showed up. That is the highest Lyme score you can get. I now have to find a Lyme specialist in Canada. I am encouraged. This could explain a LOT of my symptoms and not just the bladder either but lots of things.
I am still waiting on my broth culture results and the vitamin-mineral blood test. Those results will be in next week and the nurse is going to call me about them then.
Finally something makes some sense! I hope you are feeling OK today. My sleep is still crap but I might be one step closer to figuring this all out.
May 18 2006, 12:01 PM
YAY suffering!!!!! I am sooooo excited for you! Can you see the light at the end of the tunnel??? I know one day soon this will all be behind you and it will be just a bad memory. Your life will begin and be full and happy again! That is very good news. You finally have an answer!
I'm seeing that urologist today again and I'll ask him about broth culture and Lyme and mycoplasma infection. Not hopeful. You should be out celebrating this news! Keep me updated! Toodles.
May 18 2006, 12:02 PM
oh, I forgot to mention that my stomach problems were caused by the aspirin that I was taking for my bladder. It ate a hole in my stomach. Blech!
May 18 2006, 01:57 PM
Hi Urethritis: Ouch, that stomach sounds painful! Let me know how your urologist appointment goes.
I am relieved to know that it is something that can be treated and the Lyme diagnosis makes a lot of sense given my symptoms. I will keep you updated. I am curious to find out the results of my other tests too.
May 18 2006, 05:59 PM
okay, so that urologist now hates me. I took my mom and we ganged up on him. he was pissy w/ us and we were very rude to him. he kept trying to tell me it wasn't my bladder and that I should go see a gyno. Well, that's what I did last time and he sent me back to this urologist. he said he doesn't think I have IC but he can't rule it out and then he said no natural cure would work for me. oh yeah, then what will smartypants???!! It was very irritating. so now he wants me to go up to seattle to an IC specialist and I told him I couldn't afford it and he said that if it were important to me I could. &%$* him!! He is such an ass! and now he hates me. so I will go and see a naturopath now in Oregon. I'm tired of these docs. but he actually admitted that all he sees all day are old men w/ prostate problems and that he isn't specialized in female problems that aren't easily diagnosable. ha! anyway, that was my day. hope things are going well for you. I mentioned you in my appt. and I even brought up the mycoplasma and broth culture and he said it wasn't the right way to go. whatever. my mom said you would have to take antibiotics for Lyme. is that what they told you? take care.