Bartonella?

[Dreamlove15]

Ok. I've been wanting to post his forever. But I guess I never had the guts to.

Anyways, I've talked to a few people with IC before and now on here. Ive been told by certain people that maybe thats what I have.

Never had cats...allergic to them and I dont have ticks.
but even if you do have cats. it doesnt mean you gonna get this bartonella?

I would think that I would have been asked to take a test by my doctor if I had this.
and that IC would have been understood more if thats really what was causing it.

and out of my misery by now. i understand that people can have both disease. but i think that they are separate.

perhaps ic mimics that. maybe.

I rememeber when my primary care doctor tried to tell me I had TB of the bladder. I about cried myself for two days thinking i had it.

well guess what? I didnt.

I just dont think ive spent almost a year in pain if i just could take a simple pill and have my life back.

I see someone posting things about how IC is all about Bartonella and it scares me a bit...

i apologize if i have stepped on anyones toes.

[vm]

Just from what little bit I've read about it here on the boards - and it really is only a little bit, so take this with a grain of salt as always: is that some people with bladder symptoms similar to what we see in IC may have Bartonella. Some people who have been treated for that seem to get relief from those symptoms.

Does that mean that most people with the bladder symptoms we seem to share have Bartonella? I think that's highly unlikely. If it was that simple I think the medical community would have been on it already - or would be jumping all over it now.

We just don't know of a single cause or "cure" - or even one treatment or combination of treatments that works for everyone with these symptoms. A lot of us had "something" happen right before our symptoms started - a trigger. For others it wasn't that clear. Jill wrote a really great post back in 2006 that discusses some of this:

http://www.ic-network.com/forum/showthread.php?t=24323

[ICNDonna]

One of the problems we can have in dealing with IC is that someone will have good luck being treated with antibiotics, with herbal remedies, with all different kinds of remedies. And some people with IC will have remissions even if they aren't on any kind of treatments at all --- it's a real puzzle.

Unfortunately, sometimes a person who has been pretty miserable and shows improvement after being treated with a particular thing becomes so convinced and so enthusiastic about the treatment that they begin recommending it to anyone and everyone who is suffering. And even more unfortunately, there are some out there who are so desperate for relief that they will try anything to try to feel better --- which makes them extremely vulnerable.

I'm sure there are some who have infections of different kinds and don't actually have interstitial cystitis, but have many of the same symptoms --- and they may be helped substantially by having cultures done and treating the infections.

I have had biopsies taken and cultures done and I do not have any kind of infection. If you are being treated by a qualified physician, I feel confident that had you shown any signs at all of bartonella or any other infection, testing would have been done.

I encourage you to work with your physician to find the best possible treatment options for your particular instance.

Sending warm hugs,
Donna

[Dreamlove15]

Thanks so much for the replies.

I just really think that it's important to recognize that NOT every treatment works for every IC patient.

and that IC is different for everyone, but I think all of us know that by now.

I have done my research night after night.

I also was on antibitics from august until december daily...many different kinds as well and I still have IC?

I mean it kinds of makes me think that perhaps bartonella & lyme is its OWN SEPARATE disease. I congratulate anyone that has been helped by this so called antibiotic Biaxin, but I also dont think its good to shove a diagnosis down someones throat when you are not A PHYSICIAN nor know that persons symptom history.

and also people going as far as saying that IC is a "fabrication" really makes angry.

I have not sat here for almost a year in agony because I live with a "fake" disease. I would not be a 23 year old filing for disability. I would not be writhing in pain, going to ER in horrid pain. I've had my blood drawn too many times to count, I think they'd have figured that out already if I had this so called "blood infection".

Don't you think that my doctors would have offered me this so called cure if it was available.

I do believe that if there was this sort of "cure" for IC, than there would not be over 24,000 or whatever people with IC STILL suffering. we wouldnt be living like this.

I believe in helping others find relief, but what I don't believe in is making it seem as though your treatment is THE ONLY REMEDY, which can lead to false hope.

I just think it is sad to see someone who apparently knows how much suffering this disease causes. would go around saying things such as this...brings tears to my eyes:/

reading things like that makes me not wanna come around.

[ICNDonna]

I think you're wise to be working with your physician to find relief.

Sending gentle hugs,
Donna

[vm]

Don't let things like that run you off - just stay and be part of spreading the true facts, OK?

[SandraCT]

Can someone please explain to me what Bartonella is and how you get that? I read a little on a search but am confused. Does it mimic symptoms of IC? If the treatment for it is antibiotics, I would think I woulnd't have it because I was on A/B for a long time. I have never heard of Bartonella. I'm just curious.

[yvette]

From what I've gathered Bartonella is type of bacteria that can come in differnet forms of illness....cat scratch fever is one, trench fever is another. And there are about 10-12 different species of Bartonella.And you can get it from mosquitos, fleas, ticks, sand flies and the critters they live on (Cats, mice, dogs, squirrels, etc.)

For some with Lyme disease....the addition of Bartonella in thier systems, is causing bladder symptoms are very much like ours (ICers). Biaxin is just an antibiotic...it may work for some....others not. Others take Levaquin. I'm sure others take other types of AB's.

As far as the fabrication thing...prolly a poor choice of words....but there was no maliciousness behind that...it was simply someone who was really excited that they wanted to "shout from rooftops" what worked for them and that a wrong dx of IC was actually this Bartonella...nothing less nothing more. There are posts on here showing that the professional community would like to change the IC name because it is inaccurate and much too generic for ALL it encompasses about that. And that's all I'm mentioning about that.

*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

Dreamlove don't give up. I know its so hard at times. And it's tough not to become cynical---a lot of us have been thru so much...and we've been poked and prodded and sucked dry from giving specimens. I've been sick since I turned 22 and I'm 37, so I 've been thru most of it. You gotta just pick and choose what your path is....some people will be really strongly opinionated because it works or doesn't work for them....not because they want to make enemies. Kim's right, don't let anyone run you off....everyone's got their own ideas on EVERYTHING (not just IC either). LOL! So stick around, cos we're gonna want to hear about your remission when it happens, k?

hugs,
y. :)

[SandraCT]

Thanks for explaining that to me Yvette. I had never heard of it before.

I appreciate your help.

[leelee88]

Great explanation Yevette!

Jamie do not let things like this get you down hun, You have been through so much and you have so much and you have alot to offer and could help alot of the new and scared newbys that come here.. So please try not to get discourage and just understand some people will come here and explain there sucesses. But by no means are they trying to disrespect what we have..I think some just really do not understand IC ((((hugs)))))

[liaautumn]

You are all addressing my posts directly so I thought I'd respond. I didn't mean to upset anyone, truly. I just wanted others to have this information.

Let me be clear - - I don't and have never had cats. I don't have any other symptoms of Bartonella, either. I went through three urologists over the last 5-6 years and NOT ONE of them told me to test for this. Instead, they just told me that I had IC. Yes, you would think they would at least be raising this possibility with their patients but I think the research is so new and still in development that it hasn't yet gotten to the broader medical community - that is just my guess though.

The major question is does Bartonella cause the same symptoms of IC or do all IC patients have it? I don't know, honestly, but what I do know is that I wanted others to have an alternative approach to treatment JUST IN CASE they are struggling with a Bartonella infection. That's it. Period. And I wanted to let you all know that the specialist I am working with is finding out that 95% of her patients have it. She is finding a clear connection.

I was simply encouraging others to check this out. I really wish someone had pointed me in that direction 5 years ago but I had to find this out on my own and I'm glad I did. I shouldn't have used the term "fabrication" but I will say that based on my experience with the so-called specialists, they are pretty clueless about IC generally. If that isn't your particular experience, then you are very lucky.

I'm sorry you all have misunderstood my intentions and I wish you all nothing but the best. I've asked to be removed from the group, but you are all in my thoughts/prayers.

[leelee88]

liaautumn,

I think people might be able to learn from you, How was you first Dx with IC? I know you do knot have it but what made your Dr think you did a few years back? And could yo please tell us what your symptoms were..

[jen74]

Liaautumn,
I think it is great that you let everyone know about this, because any info is good when it comes to this disease. No doctor out there has an idea what causes IC , so no stone in my opinion should be left unturned. I am planning on seeing a infectious disease specialist and plan on asking him about the bartonella blood test. I have been exposed to cats( my brothers) and my dog and misquitos. Who knows. But like I said, nO stone left unturned is how I look at it.
Jen

[ICNDonna]

Jen, if you think you might have this, your regular doctor can order the test. You don't need to see a specialist for this. If your own doctor finds anything suspicious, he/she will refer you appropriately.

Sending warm well wishes,
Donna

[liaautumn]

Donna is correct - if you are thinking about going down this path, all you need to do is have your doctor/urologist contact one of the few labs that run the proper blood smear test to identify Bartonella. You don't necessarily need a specialist.

Leelee 88 - since you asked, my symptoms mirrored your typical UTI - and I struggled with it for 16 months the first time (the urologist told me it was stress-related) and then 8 months now, where it came out of nowhere. My cultures all came back negative, and then after running other tests I was told that I had IC. During that time I was off and on antibiotics, and I knew my body - I always felt better on antibiotics (only certain ones) and I was convinced something bacterial was going on. I just had no idea that it was in my blood and I was being tested for the wrong things.

Bartonella can cause all sorts of symptoms - but mostly it attacks the skin, stomach/intestines or the bladder. It rarely attacks all three, and so it's very common for someone to just have bladder symptoms (for me it was the "cracked glass" feeling in the bladder) and nothing else. Or just stomach problems and nothing else. It can also cause vision problems (blurriness) but I think it has to be pretty advanced to do so. She said 5-6 years based upon my "markings" in my immune system and certain other levels that they check.

And yes, I was on another antibiotic for months. It helped, but it wasn't the best thing for it - now that my treatment is more targeted, I'm really seeing results. Not all antibiotics work for it, so you have to get someone who knows what will kill it.

I have no idea how I got it - you can get it from something as benign as a mosquito bite, which is pretty scary - but I have finally found my answer. I'm not trying to pitch false hope. I'm not selling anything. I have no vested interest other than to reach out to you wonderful people and present you with the information I have gathered. Maybe it will help you, maybe it won't. My sincere hope is that it will.

[Dreamlove15]

I'm sorry if I took things wrong.:confused:

I would say more. but im not doing so well right now.

[leelee88]

liaautumn, Thanks for your reply and explaining it..

[jen74]

Wow, that is funny becuase all the symptoms you described I have. It started with severe throat burning(just like in my bladder) that no one could figure out why, I even went to to the mayo clinic and they were sure some was wrong with my immune system(autoimmune). Then I have the intestinal issues( neuropathic dysmotility in small bowel), and the bladder pain as well. I also just got dx with a very rare skin disorder called lichen aureus which is very rare. It really makes you wonder.
I have a UTI right now and am on keflex and yesterday my bladder felt better than it ever has. Though, I have some pain right now. I do notice though that when I an on certain antibitoics, my bladder does feel alot better. I mentioned this to my urogyne, but he just poo-pooed it saying that it is just a coincidence and made an examle saying of a person had a migraine and took and antibitoic, their headache may go away too.
SOrry, maybe once is a coincidence, but several times, I cant believe that. I went to the urgent care the other day and saw a really wonderfrul doctor. She said that I have to keep looking and maybe there will be an answer. She said you cannot depend on the doctors, they are not going to research this. She mentioned the movie lorenzo's Oil and how they came up with a cure, just two ordinary parents of an ill child. Oh well, I am hopefully going to see a infectious disease doc soon, I waiting for them to call me and give me an appointment. If anything, maybe they can help me with these chronic UTI's.
Jen

[ICNDonna]

I believe the bartonella issue has been adequately presented, both the pros and cons, in three separate threads. I am now closing all three --- and ask that this topic not be reopened.

Donna