Bartonella Update

[Spacechimp]

It's been three weeks since I've been on Levaquin for the bartonella which was found by the Fry test in early October. The first few days my bladder flared up, then I had 1 week of absolutely no pain in my bladder at all. No pressure, nothing! I have not been pain free like that for 10 years. None of the other antibiotics worked this well, probably because they were not bartonella specific. I honestly didn't know what RELIEF meant until that glorious week.

Then I had pain again for about a week. Of course this bummed me out but at this point, after being in various levels of pain for 10 years, I figured I would be grateful for the week of relief and not count my blessings too soon.... Well...the pain went away again and I have been feeling great. Apparently, the symptoms can wax and wane during the first month of treatment for bartonella due to die-off. I guess some would call it a "herx" but I don't know because I don't feel as terrible as some people claim to feel while herxing....

Actually, I feel wonderful. I didn't realize how sick I really was. Not only is my bladder pain gone but I feel better in general. I am sleeping better and feel more energetic. My joint pains are going away too.

I sure hope that killing off this bartonella will do it for me. It will probably take some time though because I've had this for at least 10 years, probably a few years longer than that.....

[Sally939]

That is so great.

[PlainJane]

That is great news!

[mich2604]

wondeful news, please keep us updated!

[PlainJane]

I am supposed to do bartonella treatment when my stomach starts settling down. I've been feeling pretty rough these days (it's my 3rd week into IV Rocephin treatment).

I have major insomnia and bladder irritation (no pain) is also another big symptom for me. The two together are miserable as you know. I hope bartonella treatment will help me. I tested positive for bartonella through Fry Laboratories a few weeks ago.

[SharonA]

What wonderful news. I am very happy for you Space. I hope you continue to feel better and better. :):):)

[frickla]

Spacechimp. I have a negative with Fry but my LLMD still wants me to do Levaquin. One of the very first abx I tried almost three years ago started my IC pain. I was reluctant to try abx again for Lyme because so far no abx has helped my IC pain. Your post has made me rethink this. I work with RK. Please keep us all posted. Laura

[Spacechimp]

Sorry I haven't responded. I've been super busy.

Yes, I am working with R. K.

I have been on Levaquin for about 6 to 7 weeks. My bladder feels better than it's ever been on any antibiotic or DMSO treatment. I am really quite sure that the bartonella and possibly Lyme is the source of my bladder pain. My bladder still feels twingy now and then but I would say that the pain level is probably 5% of what it was.

I went to a Lyme disease board recently and started a post about bartonella and bladder pain and a bunch of people who have tested positive for bartonella came forward and said they too have had chronic bladder pain for years and many were diagnosed with IC. It was an eye opener for everyone there because bladder pain is not listed as a typical symptom of bartonella - although experts in this field are changing their thoughts on this.

My insomnia is better but not completely gone - but then again I have gone through menopause so maybe some of my insomnia is hormone related. I do feel better all over, in general.

My family commented this holiday season how I am singing and in such a good mood. Well, I told them, YEAH, I'm not in PAIN every day anymore. Just because you don't talk about it every day doesn't mean you aren't in some level of pain and irritation - you just learn to live with it and carry on the best you can without becoming a whiner.

There is a newer Lyme test that R. K. told me about and I am going to do it after I finish the treatment for bartonella. I think this test came from Europe. I really hope I don't have Lyme underneath the bartonella because after 10 years it may be really hard to get rid of and that could also be a source of the IC.

[frickla]

I have been treated for Lyme and babesia, but I continued to have bladder pain and all over body muscular and tendon pain. So I'm coming at this from the opposite side, hoping the last piece will be the treatment of possible Bartonella. I have insomnia and must take medication to help sleep. I am into menopause by way of having a recent LSH, but I had been heading that direction anyway for many years. I'm glad you are doing well and enjoying your life more. It is a great feeling. I was not aware of a lyme test from Europe. How long will you be taking Levaquin and is sounds like you have not had any negative side effects that have been reported. Can you say what other Lyme boards you posted on?

[Spacechimp]

I will be taking Levaquin for 3 months and then probably test again for bartonella.

I haven't had any bad side effects from Levaquin.

I can't remember the name of the newest Lyme test from Europe but as soon as I get the test kit I'll post it for everyone.

The lyme board I posted at is HealingWell.com

[Vampireness]

****asked me to test for Bartonella in a lab in **** or something, is that ****? So, Lyme and Bartonella is different? Umm, Lyme can only be contracted from deer ticks right??? So, if you haven't been around them, you can't get it?? Seems like SO many people have Lyme and it doesn't seem easy to get rid of.

How much did you pay for the test SpaceChimp?? To test for Bartonella, you need blood sample right? She told me it's what cats carry and so I'm wondering, everyones bitten by cat fleas or something? My illness started out with an UTI and am I right to say, it slowly progressed to what it is now and along the way, I could have picked up Bartonella, I'm pretty confused.

Vampireness

[Spacechimp]

It cost me $495 and my dumb insurance only reimbursed me $140. It was worth it. I took Levaquin for 3 months and have been off of it for about one week.

I was really scared that the bladder pain would come raging back but it hasn't (KNOCK ON WOOD!). My next step is to wait until I have one month behind me without antibiotics and then I have to have the Melisa test for Lyme.

I am allergic to cats so I never am around them if I can help it, so I never was bitten or scratched by a cat. The only thing I can think is that the boyfriend I had right before this illness started DID have a cat. Maybe a flea got me, who knows? But bartonella is a lyme disease co-infection so that is why I need to see if I do have lyme as well. I am really, really hoping I don't have lyme too. After all this time (10 years) it will probably be almost impossible to get rid of completely.

Vampireness: I also PM'd you..... but I wanted to put some info on the board for everyone to see because it might help others.

[mich2604]

Spacechimp- that is excellent news!

I just wanted to add that the blood smear is 295,that is just the blood smear, my insurance paid a little less then half, I tested positive for bartonella.

I do have a cat and she used to bite me so hard that she drew blood.

When i could work, she hated me to leave and would cling to my ankles. So who knows.

I asked a vet and he said a cat bite or scratch would just cause a skin infection. Im not sure about fleas.

[boukie]

It's been three weeks since I've been on Levaquin for the bartonella which was found by the Fry test in early October. The first few days my bladder flared up, then I had 1 week of absolutely no pain in my bladder at all. No pressure, nothing! I have not been pain free like that for 10 years. None of the other antibiotics worked this well, probably because they were not bartonella specific. I honestly didn't know what RELIEF meant until that glorious week.

Then I had pain again for about a week. Of course this bummed me out but at this point, after being in various levels of pain for 10 years, I figured I would be grateful for the week of relief and not count my blessings too soon.... Well...the pain went away again and I have been feeling great. Apparently, the symptoms can wax and wane during the first month of treatment for bartonella due to die-off. I guess some would call it a "herx" but I don't know because I don't feel as terrible as some people claim to feel while herxing....

Actually, I feel wonderful. I didn't realize how sick I really was. Not only is my bladder pain gone but I feel better in general. I am sleeping better and feel more energetic. My joint pains are going away too.

I sure hope that killing off this bartonella will do it for me. It will probably take some time though because I've had this for at least 10 years, probably a few years longer than that.....

What did you take to get rid of the bartonella and for how long? And how do they test for bartonella? How did your Dr. figure out it was bartonella that caused your IC? I've been hearing a lot about bartonella

[boukie]

hi i am an ic patient for about 3years have ic. what was the reason why you couldnt get blood test for bartonella from a primary dr.? and how do you send them a blood test? i want to do the test for bartonella as well.

thanks
marissa

[boukie]

It's been three weeks since I've been on Levaquin for the bartonella which was found by the Fry test in early October. The first few days my bladder flared up, then I had 1 week of absolutely no pain in my bladder at all. No pressure, nothing! I have not been pain free like that for 10 years. None of the other antibiotics worked this well, probably because they were not bartonella specific. I honestly didn't know what RELIEF meant until that glorious week.

Then I had pain again for about a week. Of course this bummed me out but at this point, after being in various levels of pain for 10 years, I figured I would be grateful for the week of relief and not count my blessings too soon.... Well...the pain went away again and I have been feeling great. Apparently, the symptoms can wax and wane during the first month of treatment for bartonella due to die-off. I guess some would call it a "herx" but I don't know because I don't feel as terrible as some people claim to feel while herxing....

Actually, I feel wonderful. I didn't realize how sick I really was. Not only is my bladder pain gone but I feel better in general. I am sleeping better and feel more energetic. My joint pains are going away too.

I sure hope that killing off this bartonella will do it for me. It will probably take some time though because I've had this for at least 10 years, probably a few years longer than that.....

I have a few questions. How long were you on anti treatment for the bart go be completely gone? Does it come back after you have stopped the anti treatment? or you ony get it again from ticks, fleas cat scratch? I have been on anti for 6 wks now for bartonella. Azithormycin and Mycobutin. I still get the long streaked rash on my arms, which tells me I still have it in my system. How's your bladder doing now? Please let me know, thanks.

[jen74]

Interesting. How did you get the bartonella infection in the bladder?
Jen

[boukie]

**** is finding that bartonella destroys the lining of the bladder and it can take the lining away on the heart (some species like hensalae) so she thinks IC patients get IC from Lyme or Bartonella. It makes sense to me.

[jen74]

How does a person get bartonella in the bladder though? Is this a common bacteria found to cause UTI's ?

[boukie]

It's found in the body thru a blood test thru Frys Lab only. Bartonella breaks down the organs in the body and can effect one organ more than others. Do you have cats? ever been bit by fleas? Then you prob have it.

[mich2604]

Hey boukie- Ive been on levaquin for 5 days now, low dose though. Im on my period, so cant really tell what is going on.

Before I got sick my cat was biting me a lot , leaving very very large wounds and scratches. I dont know if it was the cat or a tick as I was hiking during this time too.

Some also feel that its not the actual Bartonella that cats carry but another variation ...BLO(Bart like organism)

Urine cultures do not pick this up as this infection is systemic in nature.

Is R finding mycobutin and zmax better than levaquin?

[jen74]

I do not have cats, but my brother has three, though they are house cats though so I am not sure if that makes a difference or not. DO all cats carry this? I know my brother had a huge issue with fleas a while back and he got bit all over the place. He did not get effected by any of the flea bites though. This is interesting, but you think more people would have this since so many people have cats.

[boukie]

I dont know i've read on the internet mycobutin and azithormycin is the drug of choice. i have also seen Levoqui sp wrong sorry. I know most people need 2 anti I take the Az 600 mg every other day and 500 mg of mycobutin twice a day. I have been on the anti now for 6 wks and have a ways to go. I get everyday the long scratch mark like rash on my body everyday, so I know the bart is still in my system.

[Spacechimp]

I was warned that the Levaquin for 3 months may not take care of it.

I felt good since taking Levaquin from Oct to January and still felt good all the way up to a few weeks ago. Then I starting having a lot of strange symptoms like stuffed sinuses and draining, neck ache and headaches, upset stomach, pain in my left thumb joint, my left big toe hurting, itching in my ears, weird bumps on my scalp - all stuff I had during the past 10 years with the IC. Then last week my bladder flared again so it looks like the bartonella is not gone yet. Apparently it is stubborn to get rid of like Lyme.

I am now on the Azithormycin and Mycobutin for 5 months since the experts say that bartonella has a 4 month life cycle. I started Azithormycin on Sunday and will start taking the Mycobutin after 1 week.

For those that questioned about getting it in your bladder - lyme and bartonella both attack your soft tissues, so you can get it all over your body. I have come up negative for every lyme test out there - even the recent Melisa test so I have standalone bartonella. I am quite sure I got it from my ex-boyfriend's cats. I got IC right after we broke up and had a lot of strange symptoms before the bladder pain hit me.

I did not experience a herx from the Levaquin and I am a bit nervous that I will with the Azithormycin and Mycobutin. I had a rash when I first got this 10 years ago - it wasn't "streaky" it looked more like a lyme rash and I don't look forward to getting it back!

[jen74]

What kind of doctor is treating you for this? I know there is no way my doc would just treat me with all those heavy doses of antibitoics without having a 100% positive test saying I have Lyme disease. How did they determine you had bartonella in your bladder? Did it show up in a urine cculture?
Jen

[Spacechimp]

I am working with the nurse practitioner. They did not find bartonella in my bladder, they found that I have it in my cells through a test done at Fry Laboratories.

Bartonella lives in your body, not just in your bladder. It can cause urinary issues along with a whole host of other symptoms.

Bartonella can cause damage to other parts of your body besides the bladder so it is important to get rid of it once you test positive.

[Vampireness]

**** just told me I have Bartonella, and I don't know how to feel. . . . more importantly, I don't know if these cats I have at home. . . . I have 4 cats, now I'm wondering, when the hell did I get Bartonella??? I've had this illness for like six years now I think. And, I got my cats after my illness began, so. . . . hmm. . . .

So, what happens after or while on treatment for Bartonella, like will I get reinfected if my cat bites me? Is there a test to do for the cat, ehhh . . . .

Anyone else found Bartonella recently?

Vampireness

[boukie]

yes, if you get scratched by your cat you will get bartonella again, only if your cats have it. The vet can do a test. I grew up on a farm; therefore that's how I got bartonella. I've had this my whole life and never knew it. I'm taking minocycline and mycobutin. The myco is for the bart, mino for strep b and d. It's been 3 mo. now on the anti, and I have another 2 mo. to go.

I just stopped the Azithromycin for the bart. You can't take too many anti, it will ruin your gut. You will go thru the herxing reaction, which makes you feel really achy, tired, hungry. It fades after about 2 mo. I don't even get it anymore.

Hope you feel better.

[Vampireness]

Hey Boukie,

You mentioned "I dont get it anymore" or something like that, what did you mean?

Is the treatment not working or is it the Herxing thing?

It seems like everyone tested shows up positive for Bartonella? I plan to get my cats checked then. I have countless number of scratches and I do get bitten. Before I got my illness, I wasn't around but way before that I touched stray cats and have been bitten and scratched.

I don't know, I thought I saw some hope in the results but everyone gets the same results?? My blood got held back at the customs and so was a week late and I see that it still shows positive, blah I don't know.

Vampireness

[malone]

Hi Everyone,
On Monday of this week I sent in my last test to the labs. I, too am working with***and have a few questions. When should I wxpect to get the results from the broth culture and the blood smear. I have never been in this much pain--ever! I am so nausoeus I think from the pain. I feel like I am ready to go crazy. I hate this with all my heart!! Sorry, I did not mean to rant but if anyone knows the answers to my questions it would really help. Thanks--Ginny

[MarthaF]

Ginny,

The broth culture takes a week. I don't know about the blood test. You can call the lab in a week and ask them to email the results if they are ready.

Martha

[Vampireness]

Hey there (Malone) Ginny,

As for the broth culture, it took me like a week to get my results. And, the blood smear is for Bartonella? I got that pretty quick. The blood was sent to the lab on the 10th, but my blood had been sitting in customs due to clearance issues from the 3rd, so then ****told they found Bartonella on the 19th. I told her to let them know to destroy the package somewhere around the 12th and she told me she would and that they are informed, but they went to work on the test anyways. I don't know when they started but she told me the 15th that they started on the test despite what I told them, so I don't know if they started on the 15th and finished within five days or if they started on the 10th.

She did mention before it takes like two weeks to get the results back for Bartonella. I'm really sorry you're in a lot of pain. I'm not really in that much of pain, but I was when I first did my broth culture, that was two years back. It's alright about wanting to vent, all of us need to at some point.

Have you tested positive for UTIs before? Are you on any treatments or pain relief?
Do take care. . . . just hang in there.

Update: I see that Martha already answered lol. Anyways, yeah, I been off antibiotics for slighty more than a month now so yeah I was hanging in there but nothing compared to what I would have felt like two years back if I had gone off antibiotics.

Vampireness

[PaulM]

That's terrific...PLEASE, keep us updated.

[Jo Jo]

I am trying to find out if anyone has gone to Dr. Eric Margolis in Englewood NJ and if so what was your experience with him.

I have heard very good things about the practice but have not spoken to anyone who has been his patient.

Thank you

Jo Jo

[Vampireness]

Update: I'll be having an appt with ****real soon for Bartonella treatment, will let yous know how it went and what treatment I'll be on.

Vampireness

[malone]

Hi-
****called me yesterday and told me my test results are back! She said the resilts are "significant" and that she wanted to set up an appt ASAP. We are going to talk tomorrow at 11:00. I have been in the most awful pain and I am truly hoping that this is going to help! I will let you know what she has to say --keep your fingers crossed! Ginny

[Vampireness]

Hey Malone,

I'm glad you got your results back. What does she mean by "significant", do you have it or no? Which results were they? Broth culture or Bartonella??? I hope your appointment goes well and I'm really sorry to hear you're in pain.

Do ask her something to help you with your current pain while the bacteria takes time to leave your body, to my understanding, you'd feel worse while the bacteria leaves your body as far as Bartonella goes, that's unavoidable when on treatment.


Vampireness

[malone]

Hi-
Well I got back a lot of results but the **** test that shows bartonella will be back in one more week. Wow-she had a lot of news that for sure. I must say I am not sure I understand it all yet and I will just talk about the ones directly related to the IC.My vitamin D test score was 16 and 32 to 100 is normal. Vitamin D helps fight chronic disease and w/o it your immune system can become compromised. It can leave your nucous membranes like the bladder wall at risk. I may not have all this right so if anyone else has better info just let me know. My CD57 test was WAY low. This test tells us that there is a definite active infection somewhere, right now we are assuming it is bartonella but that comes with the **** test. If it is not that then we have to start digging to find out what it is. Last up wasthat my red blood cell and hermatic (sp?) crit scores were low. which again points to bartonella. She said all these things could cause the horrible amount of fatigue I am having. Between the pain and fatigue I am ready to lose it. Vampiress--thanks for your kind words. I have a wonderful pain mgmt doc and he wants me to increase my oxycontin but after being in remission these past 9 months I feel like it is giving up. I know thats wrong and I know I am lucky to have the pain meds and I should not complain but I hate those meds! Well thanks for listening and If anyone has any questions feel free to pm me--Ginny

[shelly1225cj]

hi i was reading your threads and im also working with ****.. Im on minocycline and augmentin and ammox. i spoke to her today and im going to be starting rifampin . i was neg. for both bart and lyme fron igenex and **** but she thinks my body is hiding it and i had die off reaction on ammoxicllin and augementin and just after two doses of minocycline i had die off.. so she thinks i have bartonella so im dropping the ammx and augmentin and staying on minocycline and taking rifampin....to see if i have die off on the rif. we will see....its experimental for me because i was neg. for both. i guess..but i trust she knows what shes talking about... im starting to feel better. frequency has went down, pelvic pain and pressure down...it feels weird not as intense!! So im happy and determined to get better so im running with whatever she thinks is best! i am on the augmentin and ammox for strep D its been 2 months on that and about a month on minocycline. now in a week when i get back from vacation i will stop augmentin and ammox and start the rifampin with the mino. and see if i herx. so just an update.....anyone want to talk about my treatment with **** my email is
shelly1225cj@hotmail.com

[Vampireness]

Hey Malone - No problem. Wow you had many tests done, I wasn't asked to do those. I am pretty anxious to see what your results show for the Bartonella. Did it show infection present for the broth culture? So, what is your current treatment plan? Some pain medication does seem to give up in time, I don't take pain medications really, I used to take a lot but not anymore, I might take paracentamol when it's really really really bad so yeah, I don't like depending on pain reliefs to control my symptoms.

Hey Shelly - Your treatment is so much like mine. I showed up positive for Bartonella but she didn't ask me to take Minocycline, I have taken it before and I don't think I tolerated it well. Wait, why are you taking Minocycline again? Rifampin and Doxycycline or Azythroymincin or something? It's a combination drug right? So she thinks it's hiding huh, she said it didn't come out as high, the results but at the time of collection, she said there might not have been much Bartonella shed into the blood stream and also cause my blood sample got held up in customs and still showed positive, she said there could have been alot more to begin with. She said the point is, it's there.

I'll be doing Bactrim because she feels it's the safest for me and I've been on Bactrim before so I'll be trying that for four weeks and see if I feel any die off symptoms if not I'll be switching to another antibiotics and have to stop taking my Amoxicllin and Augmentin. It's okay to take Bactrim/Augmentin and Amoxicllin together. She asked me if I felt bad on Bactrim but I couldn't remember, however I do remember taking Bactrim and Amoxicllin and Augmentin all the same time and feeling REALLY REALLY bad and felt better once off Bactrim lol, so. . . . I'm not sure if that was a die off symptom. I've taken Bactrim on it's own but not more than three weeks and I can't remember how I felt. It's all confusing.

Right now, I'm waiting for prescription for Bactrim. Nystatin, Augmentin and Amoxicllin. She had told me what the die off symptoms are like and how long they would be for and how to deal with them and how to detox.

So yeah, that's about it really . . . . And, I'm really glad to hear someone else, like you Shelly, turned up negative for Bartonella, I was starting to wondering if everyone was positive. She said she would send me a photo of my bacteria but she doesn't know the species type, hence the switching around in antibiotics and guess work involved. The test doesn't show the species.

I think I've stated just about everything on here.
Vampireness

[louisep]

Hi - I've not posted before but have been reading for a while. I am also working with **and got a positive test result for Bartonella from Fry labs. I had a phone consult with her last week where she explained antibiotic options and coping with die off reaction. I am shocked that I have Bartonella as I have never had cats or been near cats. My next step is to test for Lyme with the Melisa test in Europe. I don't know how reliable this test is - whether it can give false negatives. Prior to Bartonella testing I tested positive for Strep B with UML. I took 1 month Clarithromycin for the Strep B back in March. Malone - did you do your Vit D and CD57 tests with RK? I would like to get the status of my immune system tested but my doctor isn't interested in helping me.

Thanks Louise

[malone]

Hi Everyone,
Louise--Yes I had my tests done through **. I think it is interesting that I have also had a struggle with recurring Strep B infections. Vampiress--I wondered if she put you on any of the vitamins--vitamin D in particular? She wants to put me on potassium too. I was wondering if you or anybody else had any bad reactions to any of them. I am in the worst pain right now--even with the pain meds and I am scared it will stir up even more. I am hoping to get my **** test back tomorrow or the next day. Okay--this just sucks! Thanks for a little more venting!--Ginny

[ICNDonna]

I used to take a potassium supplement, but it was because a blood test diagnosed a dangerously low level. Any doctors office can test for this particular deficiency.

Donna

[Vampireness]

Hey Malone - Most doctors don't take Strep B seriously, she told me to insert probiotics in the vagina cause she said there might be colonized in there and getting into the bladder. Orally taking antibiotics isn't going to get much into the vagina ya know . . . . So yeah I had Strep B.

As for vitamins, she asked me to take a bunch so long ago but they were too much for me to afford, but this was before the Bartonella. She wanted me on buffered Vitamin C.

But Vitamin D is so important for Bartonella because it effects the bones and when it's low the Bartonella does more damage and get into the bone marrow, I've read from other patients. So, to keep up the levels is important. She didn't offer me the test or ask me to take Vitamin D. I'm not sure if Vitamin D is okay to take those with bladder problem but I know it's important so I'd probably go on some myself.

I'm waiting for prescriptions from her and a photo of my test results and probably buy the antibiotics next month. I've also been reading many Bartonella patients (not on this forum) being treated with various antibiotics not just one, so I am going to ask her about that. There is a herbal route to build up the immune system and also a herb that kills the bacteria and goes beyond the blood brain barrier, so that's interesting to me and completely safe but VERY expensive per month, like $300 a month. Alots are doing better on it and getting the herxing reactions faster than being on antibiotics alone.

Potassium causes spasms don't they? Are you on any treatment besides pain medications, Malone?

Vampireness

[louisep]

Vampireness - what are you taking amoxicillin and augmentin for? Is it for Strep B? UML found Strep B in my urine culture. I saw a microbiologist here in the UK who found Strep B everywhere (urine, urethra, vagina) - I took 1 month Clarithromycin in March and when retested in April - no Strep B! I plan to go and see him again to be retested.

**also told me to take Vit D as well, as fighting a chronic infection can deplete your Vit D supplies. I want to get my levels tested first though.

I got my slide results posted from ****. There is one cell on it with a black dot on it that indicates Bartonella!

What I'd like to know is if there is any way you can find out what strain of Bartonella you've got so that the correct antibiotics can be taken rather than taking them based on guess work. I know ****said it takes 3 months to culture in the lab or something but I thought that PCR technique could replicate bacteria quickly.

Vampireness - what other group did you find people with Bartonella? I would be interested to find out more about the herbal remedy you mentioned.

Thanks Louise

[malone]

Hi,
I had had strep B in the bladder not vagina. V--I have tried so many things I don't even know where to begin! I had so many DMSO treatments at 50% (which they now say never do--great!) that the stuff leaked out of my bladder and poisened every organ in my body! I was in the hospital for a week and out of it for 6 weeks. I have tried Elmiron and all the anti deppressants. I went to see Dr. Hanno in Philly and he gave me great tips like using Brioski to make the urine less acidic and stuff which usually will help some. No matter what I do I can not get the pain level down. I never say this kind of stuff but after 25 years I have had it. I have never been so down. I think being in remission for 9 months really made me see what I am missing. Don't get me wrong I am grateful for the remission, I really am. I am sick of crying. Well maybe all this will really help--help us all. Thanks V it helps to have someone know what you are going through--Ginny

[Vampireness]

Lousiep - Hey. I'm taking Amoxicillin and Augmentin for Strep D and ****said that it takes a really long time to get rid of since it's deep into the bladder wall and in the tissue. She told me I could possibly have a biofilm and was working on a pharmacy to compound EDTA for me to take it along with antibiotics so that it can break down the biofilm. In the mids of this, she started seeing that most of her patients showed up positive for Bartonella and told me that I should check for it. And, so I did and turned out positive so the focus is on treating this first.

I took Cefaclor for Strep B and this was found in 2006 and hasn't showed up ever since then. However, at the same time I tested positive for Strep B, Klebsiella was found in a local lab and in UML, so I took Bactrim for that for three weeks I think. The Klebsiella returned in 2007, which is why she suspects there is a biofilm.

Where do you test for Vitamin D and how much does it cost? It's so unforunate that doctors over here don't test for you even when you pay them. I honestly don't know where to test these. Ruth told me to get my amino acids tested awhile back but I don't know where I can find this.

I know ****said it takes 3 months to culture in the lab or something but I thought that PCR technique could replicate bacteria quickly.

She didn't mention that to me, she just said that it's trial and error and some guess work has to made and herxing is the best to way to tell if the antibiotic is working and how much of Bartonella is in your system. She said something about not being able to find out which species I have. I agree that I don't like this method.

The other group is called HealingWell and there is a thread just for Lyme Disease and the herbal protocol is by ****and the specific product I mentioned is called ****.


Malone - I had Strep B found in my urine but ****said it is probably colonized in your vagina and going into the bladder so she asked me to insert the probiotics. I'm really sorry about DMSO, it ****** me off when I find out that the whole procedure was unnecessary. I did 6 rounds of DMSO, was in SOOOOO much pain. This was in 2004 I think. What do you mean it leaked out of your body? I had a terrible holding it in and in the mids of the whole 6 rounds of DMSO, I tested positive for infection once again. I knew my problem was always repeated infections.

I've tried Elmiron too, like three months of it, it upset my stomach. It was really really expensive too. I don't know if I have tried anti-depressants, I tried that started with an F but that was for depression cause my Psycharist said my depression has been felt untreated and I should treat it. My depression is because of this illness if I'm fine then I'm all good, ya know. . . Anyways, I told that pill and it didn't let me sleep for three days since it was increasing my serotin? level.

Baking soda also makes the urine less acidic, but I don't really take it, I burn sometimes but my pain is not as bad as I was two years ago. I used to take a lot of painkillers probably every two hours and maybe eight to ten a day and I didn't care about overdose so much because I just wanted the pain to stop. I was bedridden for about a week or two and could barely function and was always in bed and unable to walk well. I couldn't sleep very well either. I sleep much better now, like I can sleep for five hours most times and rarely twelve hours straight but of course I feel like crap when I wake up cause I haven't peed in so long. I do have trouble going to sleep cause my urge is bad.

I mean are you taking any medications right now? How did your problem start? And, you mentioned remission so what made you go into remission? Elmiron? I'm really sorry that this is devasting to you, it must feel terrible coming back to this crap. You have every right to be anger and frustration after you've been well. I haven't been in remission but I know how much I appericiate feeling the slightest bit better when I get worse, ya know. . . .

****did find infection in your bladder you mentioned? What was the bacteria they found? What did the Bartonella test result show?

And it's no problem, I can only imagine how you feel to have to go through this again after feelings this way for 25 years, damn. I hope your test results give you some sort of answer as to why you couldn't stay longer in remission.

Vampireness

[mich2604]

Hey Vampiress,

Glad you got your results.

I was on levaquin for about a month, and my bladder got better, first it flared a bit, then oddly my vulvodynia also improved.

BUt not I just tested positive for babesia, so my lyme specialist wants me on babs meds. I tried to plead to stay on the levaquin, but nope she wouldnt let me.

Ive been off the leva for about 2 weeks, and my bladder is a wreck right now and my vulva is getting red again, sigh.

Im due to go on zithromax and malarone.

Its amazing how well my bladder was doing before this flare :-(

Im glad that you found out another peace to your puzzle.

[Vampireness]

Hey Mich,

Where did you test positive for Bartonella? ***? I thought the test is to show Bartonella and Babesia?

Your doctor took you off Levaquin after just a month??? Huh??? I thought you're supposed to stay on treatment for atleast five months, if not longer? So they're focusing on Babesia, is that easier to get rid of? How long are you required to be on antibiotics for that?

Wow, I see that you were diagnosed with Lyme, it seems like it's more difficult to treat Lyme accompanied by Babesia and then Bartonella. But a month seem like a joke to me. . . . . I hope your doctor knows what she's doing. How did you treat your Lyme or is it treated?

I'm really sorry you're doing bad again . . . damn. When are you going to get on those two antibiotics? What are you on to help VV?

Vampireness

[profhucklebee]

Could someone describe the symptoms of die off?

Thank you!

[liaautumn]

Hey Vampireness - I'm with you, girl. After years of painful episodes, I just found out two weeks ago that I, too, have Bartonella. Am already feeling better after three weeks but the "die off" symptoms are a real pain. How are you doing now?

I am SO GLAD we finally got answers.

[liaautumn]

Dear Prof - the "die off" symptoms vary b/w people. I just had my first round of them last week and I had headaches (which I never get), flu-like feeling, fatigue, and some bladder pain and pain in my hips (which was weird). They seem to have subsided, but I'm told that it will cycle again in about 3 weeks. Basically you stay on treatment until the cycles stop. It will be 5-6 months for me, I'm sure. Hope this answers your questions.. I know some people get rashes but for me, I haven't had that yet...

[Vampireness]

Hey Liaautumn - It seems like you're working with ****?

Yeah, I was glad I found out what's wrong with me but the thing is, alot of patients have treated themselves and feel great and go off antibiotics only for the symptoms to return so there is a no cure for it, it's not as simple as 5 months. I wish it was. I haven't started my treatment yet, waiting on medication. What are you on? I'm sorry to hear you're herxing bad.

Vampireness

[MarthaF]

Yes, remember the new finding about the possibility of biofilms in the bladder. The bacteria can hide there and emerge again. But many do not have a recurrence and there can be months or years in between episodes. And many researchers are working on a way to penetrate the biofilms.

[Vampireness]

Martha,

Are you responding to my post? If so, I was talking about the Bartonella resurfacing again.

Vampireness

[liaautumn]

Well, it does come back in some patients, but that is actually quite rare. She reports that about 85% are symptom-free after 5-6 months with no recurrence afterwards. And quite simply, I'm not going to even "go there" at this point and tell myself that I will have this forever. I don't believe that. I'm taking one day at a time and one month at a time. I wish you all of the best.

[louisep]

Hi - liaautumn - what antibiotics are you taking for Bartonella that are giving you some improvement?

I too have been dx Bartonella with *** and am so confused. I have been suffering chronic urethral pain/inflammation, urgency, frequency and incontinence for the last 6 years. Dx possible IC 2002. Dx urine infection, BV, PID and vulva vestibulitis 2003. Dx urethral pain syndrome 2005.

My symptoms feel like an infection to me but I haven't been able to find a doctor in the UK to help me. I have been managing my illness myself - sending urine samples to the states etc and taking antibiotics. My symptoms have been getting progressively worse - I drag myself through each day and I feel like I'm existing rather than living. I have noticed improvements with some antibiotics but the longest I have taken is for one month. I am hoping that Bartonella might be the missing piece of the jigsaw for me as I hope it might be for alot of people out there that are suffering from chronic pain. I've got my hopes up before when infections have been found so have to remind myself that this Bartonella could prove to be a red herring.

The problem is knowing what to do next. I spoke to a microbiologist in London who was skeptical of the ***results and thought it extremely unlikely I have it! I spoke to a UK Lyme expert this morning who said that he would treat Bartonella with 1 month of a quinolone. I said I thought Bartonella has a 3 month life cycle and needed more than a month of antibiotic and he said 'no-one knows'.

So it seems we are in unknown territory. I will continue to search for a doctor who will help me. Good luck to everyone in pursuing this possible cause and keep us posted on progress.

Best Louise

[liaautumn]

Hi there - I'm on five months of Biaxin, at which point I'll get tested again.

I'm not a medical professional, but it's my understanding that one month of anything WILL NOT get rid of it. I was on Levaquin for 3 months before the Biaxin, with very little improvement. Now that they have given me a more targeted treatment, I'm having daily progress, which is great! I am surprised that your doctor is questioning the diagnosis. If I were you, I would definitely find a specialist that knows how to proceed. Please keep me posted!! I wish you all of the best.

[ICNDonna]

I'm curious --- is the testing they're doing looking for the presence of antibodies? The reason I ask is that almost everyone will have antibodies for bartonella.

Donna

[louisep]

Hi Donna,

No, the test they are doing is a blood smear. I specifically asked if it was an antibody test and it isn't. The results I got back show the actual Bartonella attached to the outside of a red blood cell. There is only one red blood cell on my photograph with Bartonella on it so I keep wondering if it is a mistake or something. I have heard of false negatives. It seems unlikely though that this could be a false positive. I don't know as I am not a microbiologist. (unfortunately!)

Louise

[malone]

Hi,
I am waiting to call ****now. Donna, is that true that almost everyone tests pos. for Bartonella? I am sure some of this confusion will clear up for me after I talk to her--I hope. After 25 years of IC I thought I knew what pain was but coming off this kind of remission it seems worse than anything I have gone through. The pain and fatigue is worse than it has ever been. The fatigue was always managable and the meds I am on always took away the pain or at least made it livable. I will write after I speak to ****. I have to say being able to talk to you all has kept me going. I respect you all so much. Thank you--Ginny

[Vampireness]

Liaautumn - I don't mean to bring down your hope, cause we're having the same diagnosis (Bartonella), sorry about that. I hope and want it as bad as you and anyone else, for there to be cure. Have you talked to those 85% of the patients who are cured from Bartonella? As many patients I've been talking to, it's not rare for the recurrence to happen. I'm really glad you're feeling better and hope you'd continue to stay this way or feel better. You mentioned, you plan to get retested, when is that? It's true though, it's best to take it one day at a time and always always treat Bartonella, whether there is a cure or no, it has to be treated cause you'll feel a whole lot even if you have to depend on antibiotics to keep it at bay. There are new medications and studies being done, so there is a possibility for something to work in the future or while you're being treated.

Lousiep - You mentioned that you sent your sample to the states to get it diagnosed and treated yourself with antibiotics. I'm doing the same thing. I don't have a doctor over here, I gave up on trusting them two years ago. They just wouldn't believe the findings of United Lab's finding nor their lab finding, where they dismissed low count as considered that as "no infection". But, treating yourself with one month antibiotic, won't do ya much good depending on the bacteria type, some need longer treatment and others need to be checked to see if you have a recurrence.

I would say that if you tested positive at United and didn't properly get treated and didn't retest to see if the antibiotic you were taking was working, then you haven't been treated right. What bacteria type did you have? You mentioned Bacterial Vaginosis, have you treated that?

Wouldn't Bartonella explain alot of your other symptoms? I was diagnosed with IC in 2005 and I've had this illness just about as long as you, from 2002. Are you consulting with ****, cause I'm wondering if you did the Fry on your own? How do you plan to treat yourself, if you did it on your own, cause you asked Liaautumn, what she took for her Bartonella.

Malone - It's always so hard to be back in pain after feeling good, I'm sorry this has been so hard on you. I think it returning and returning this way, means something wasn't treated right the first time around. So, let's hope once you start treating the Bartonella, your symptoms get under control and better each day. I have headaches real bad headaches sometimes I want to throw up cause of the headache and I avoid painkillers but I take them once in a rare while but it doesn't really help so I just tolerate it. I guess that's another Bartonella symptom? I've always wondered why I got these bad headaches and wanted to go for an MRI but it's expensive. So, your medications not working doesn't surprise me but I feel bad for you. Do take care.

Vampireness

[BrittanysDance]

I have to jump in here on this possible "new" found cause of IC theory - I've read everyones opinions and treatment options and I'm really happy that those of you being treated with AB therapy are feeling better. However - as someone else stated in the numerous threads on Bartonella - it IS present in soooooooooo many people and while some in the medical community may theorize it may cause IC - please do not forget they also theorize it may cause Lyme Disease as well - along with alot of other things.

That being said - one of my children had Cat Scratch from a kitten we got many years ago (we've had cats all our lives - and ALL of my life). While only one got sick and were treated with antibiotics and steriods - all 3 tested positive and will test positive for the rest of their lives. I too am a carrier and will test positive for it because I had it apparantly when I was younger according to the drs and I wasnt "active" like the kids were. Most cats under the age of a year are carriers of this and will always carry it. Do my kids have IC? No..do they have any other medical problems? No - but they will all test positive for it - yet only one child was deathly ill and hospitalized from it. BTW - you can now get cats tested for this disease (and I recommend it highly), its the best $40.00 you'll ever spend and will save you and your children hours of agony if you ever get Cat Scratch to the degree my eldest child got it (it settled in her bones and was putting holes in it - one of the worst cases on record and is in the medical journals now due to that fact). GET the test done, trust me.

So - bottom line is, for those that are being helped by AB treatments, thats great. But I believe if you tested 1,000 people - IC or no - they will test positive - do you know how many people are carriers of Epstien-Barr and dont even know it or TB, but are not active? If a lab starts searching for common denominators - they'll find them I'm certain. Look at the foods we eat today - steroids, AB's, hormones - the denominator is in there somewhere.

Just my opinion however....but from what I've read online, its alot of others in the medical community as well.

I do hope you all feel much better and continue whatever course of treatment makes you feel better and on the road to recovery - as that is whats most important. :)

Hugs
Brittany

[ICNDonna]

I hadn't thought of that, Brittany. I know I'm the only one in my family who doesn't test positive for tuberculosis --- my father had it when I was a little girl --- nobody else in the family actually had it, but my mother tested positive the rest of her life; and my siblings were told they would test that way for life.

Thanks for sharing; it definitely is important to have all the facts.

Warm hugs,
Donna

[malone]

Hi,
Well I finished my phone call with **** this morning. She is going to have me start Bactrim in 2 weeks--I need to get rid of a yeast infection first. She told me how sick I can become every 3 to 4 weeks and that sounds bad but it means the meds are working and if that is true it will be well worth it. Remind me of that when I come on the board complaining!LOL! It is kind of strange that I feel so bad with this flare--the fatigue is unbearable and I feel like I have the flu on top of the pain. Vampiress--have you started treatment yet? Also what do you think about the post that says everyone or mostly everyone who gets tested for bartonella will show positive results? I have never been around cats and would never have thoght about any of this but I sure am glad I did. So hopefully we are on to something and we will be able to help and to learn from each other. Let me know what you think----Ginny

[sandymarie]

All of this is very confusing, I took a big round of doxycycline and for a while almost every symptom went away except the pain. My urine was very cloudy and there was something that looked like skin shafing off. Has anyone had this with a AB theripy they are getting now. I was so sick from the meds. I had to get off. Now all the burning, frequency and urgency is coming back. It appeard to me that I would have to live on the antibiotic the rest of my life which seems to me would be horrible on the liver. I also had to take diflucan for the yeast problem from the antibiotic. Is doxy. something that was working on the bart. or is the leviquen better. Is it like all the other meds. it works for some and not
others. If I am making sense , what do all of you think. Also what is the die off symptome. Is is painful or what? I so hope that this turns out to be the answer for all of us.

:pray:

[liaautumn]

Sandymarie - I did really well on doxy initially, too, and yes it is absolutely something that they use for Bartonella. But like Levaquin, the side effects are pretty rough and there are newer approaches to treatment that seem to work just as well or better without the terrible side effects. I can't take Bactrim due to an allergy, but I'm on Biaxin and doing amazingly well. Even better than when on Levaquin (3 months).

The die-off symptoms vary from person to person. Mine were fatique, hip and joint pain, feverish, a little anxiety (which surprised me, even though I was warned), itchy skin and headache. The first round lasted about 6 days and I feel good now, and my bladder pain is pretty much gone. I expect another round will come in 2-3 weeks. Apparently that is normal... apparently another symptom is increased bladder pain which is temporary. I experienced this more early on in treatment on Levaquin, so hopefully I'm done with that. :)

I've heard others complain of nausea (sp?), which can be another symptom of Bartonella, along with IBS-type symptoms and pain in joints. Unfortunately these can all be symptoms of something else, though, so it's hard to distinguish....

[liaautumn]

Brittany - I totally understand your position but I have to wonder - you say that you are a "carrier" and will test positive for it, and yet it is known to attack the lining and bladder tissue, so I guess I don't understand how you can be certain it isn't contributing to the problem? I'm not challenging you, I'm just wondering. And in my personal experience, treating the Bartonella is getting rid of my bladder symptoms, so I definitely think there is a connection - at least for me there is... Thanks for your support!

[Mothergoose]

Just thought I would jump in here, I talked to my Dr. about Bartonella he thought it was worth try. He is going to have my blood tested, but he is unsure if I can be tested for this in Canada. He wants to put me on A/B for it anyways because I am one who does do better on A/B's.
He sent the name of an A/B to my pharamcist that he would like me to use, but pharamacist says it is not avaible in Canada or the US. Dr .said that he is sure the ussall ab's to treat this will make me sick to my stomache. Anyways I will have blood test done end of the week, and go from there.

Thank you for the info on this subject, he thought it sounded interesting.

I will keep you posted on how things go.

Mothergoose

[mich2604]

This isnt the bartonella found in cat scratch disease being found thru the testing we are having done.

Many of the dr are calling it a bart like organism.

For me, the bladder stuff came last, so i know i have something systemic going on and do feel better on the antibiotics. I also test positive for lyme.

But i just wanted to clear things up. Also, I dont think everyone with IC has infections causing their IC. There are many different causes. I know this because I talk to patients at my urologists office all the time and we each have unique stories to tell.


Im a very odd case and puzzle many dr. I feel better during times of the month most with IC have pain......and I have one week in the month that Im almost symptom free in the bladder. Its so beyond frustrating to go on the rollercoaster.

I hope we can all agree to disagree on somethings and not turn this into a debate.

[ICNDonna]

Could someone please share the research data on this subject? If it's valid information, there must be some somewhere, but I haven't been able to find it. What I HAVE found is that a significant number of healthy people will test positive because they have been exposed. I'll keep looking, but so far I'm coming up blank.

Donna

[BrittanysDance]

Brittany - I totally understand your position but I have to wonder - you say that you are a "carrier" and will test positive for it, and yet it is known to attack the lining and bladder tissue, so I guess I don't understand how you can be certain it isn't contributing to the problem? I'm not challenging you, I'm just wondering. And in my personal experience, treating the Bartonella is getting rid of my bladder symptoms, so I definitely think there is a connection - at least for me there is... Thanks for your support!


Liaatumn - do you know how many strains of Bartonella there are and which ones affect humans and which ones do not? Its sort of like ecoli - everyone carries ecoli in their bodies - EVERYONE, its just a matter of immune systems for the most part and bacteria - certain people can handle things and certain people cannot, I believe - and so do Infectious Disease specialists. As well as staph - we all are carriers of staph, each of us carry staph on our skin, but not all of us have complications from flesh eating disease do we? Nope. My IC was not caused by CSD/Bartonella.

Mitch - then what form of Bartonella is it? There are several forms of it and agian, not all forms affect humans, only a few from what I recall, and Cat Scratch is the main form that does, so please do let us know which form you're talking about and exactly which one they test you for out of the many strains that affect humans. How do they narrow it down and how do they know WHICH strain to test for? Do they test you for all of them?

Many years ago when I was first diagnosed with IC - along with many others years ago - most of us were given AB therapy as a course of treatment. Some of us were helped, and some of us werent. I wasnt one of those helped by it. Perhaps this is the basis for this "new" treatment. Perhaps those that were helped by AB therapy all those years ago actually had Lyme disease or CSD; I dont know, but it sure does sound the same to me. It seems like every few years someone comes up with a "new" treatment therapy, when in fact, its an old therapy, just a new drug is used. Maybe this is the case. Sort of like Broth Cultures - been around forever, but some doctors are just now "getting it". ?? I dont know.

I, like Donna - would love to see studies by NIH, NIDDK or any other reputable medical community on this. If this were something that were the "hot button" for IC - then it would be out there already in those high up medical areas - and it IS - in the form of CSD and Lyme Disease, but not in the forum for IC; at least not from what I've read anywhere, so please, do share what you have as we'd all love to see. Anything about IC will be of value to our community, but if its just one persons opinion or one doctors opinion on something, then it wont hold much value - it has to be the medical community as a whole for it to be valid.

AB are used to treat Lyme Disease - do you know there are different types of Lyme Disease, As well as Epstein-Barr? And Lyme is caused by ticks, and it wasnt until 1999 that scientists discovered that ticks carried Bartonella (another form of it, not the same form as cats) - so perhaps its different strains and maybe its actually Lyme disease?

I dont know..but as I said, I'm glad those of you being treated with AB therapy are feeling better - but perhaps its not just IC that you have, perhaps its something else along with your IC.

I'd still like to see valid studies from top medical communities on this - its interesting to say the least, but I need to see stats before I make a solid conclusion on it.

[Mothergoose]

I agree with those you asking for study info on this topic. But someone has to try this to get medical system interested.

I have two things to tell, that are not directly realted to this but might make you think.

First for years people who had ulcers were thought to be stressed or worse, but it was thought to be psycalogical. But come the end of the 1990's it is now known to be a bactria effecting the stomach, you catch the bug you get it, nothing to do with your state of mind, unless you look at that stressed people's immune systems are reduced.

Secoundly my son got diareahra really bad, ab pain, vomiting etc. Dr. gave me every reason they could think of but could not help him. Finally I said what about parasites, he was tested and was pos. I can't remember the name at the monment he was treated and got better, but I was told well if you tested people for that parasite they would be pos. but would show no signs of illness. That this show not make him that sick but it did, and yes he did have reoccurance of it but you don't develope an immuntiy to it.
We didn't know where he was getting it from, turned out to be his grandpa, who had it but was not sick. Now we have also found that he has food allergies that effect him the same way, so maybe this is why he was so much sicker than other people with it.

Bartonella my not be a proven thing, but I think it is good that someone brought this to the form, we can make our own deccisions about it, nobody is saying that this is the one and only cure of IC, they are saying maybe. I do not think people should treat themselves for this, I think If they are going to go this route they need to talk to their Dr. about a treatment plan. A/B should not be taken indiscriminatley. Also ICer's often have many other problems with it, so even if it does help some, everyone is different. Everyones treatment plan needs to taylored for them.

I don't think the job of the board is to censor what information we are given, yes I think we all need to be warry of scams, but I have seen no evedence of a scam, I have been ask for no money or anything, I have not even been given false hope, I have been given a lead to research
and to follow up on to see if it may pertain to me.

Just my thoughts Mothergoose

[liaautumn]

Brittany - as to your questions. I do realize there are many types of Bartonella. They won't know for four months exactly which type I have but they have run sensitivity tests on it. You might also be right that Lyme is the culprit and I will be tested for Lyme after the first round of Bartonella treatment, just to be sure. In any event, untreated Bartonella can cause complications later on down the road so it's my opinion that it needs to be treated.

[BrittanysDance]

Mothergoose - I agree wholeheartedly, and I want to ensure that no one that reads anything I've written takes it the wrong way. Written "text" is very hard to hear monotone and how it comes across, so I want everyone to understand that I in no way am being condescending or anything of the sort - thats not who I am at all :).

Liaautumn - I didnt realize they hadnt tested you for Lyme yet. If you dont mind, may I ask if you know why that wasnt done first and, if they've tested for Epstein-Barr as well? I'm soooo very curious about this whole Bartonella thing, its really peaked my interest (as it has many others as you can see) - and in a very good way, but I'm so very cautious as well because no one can tell us anything about studies or clinical trials or anything, and it's bothersome in a way, especially when the claim is made about "IC"; or at least in my eyes it is. Mitch says "its not that strain of bartonella, but a bart organism" - well bartonella is bartonella - so if its an organism of bartonella, it is still bartonella. So what strain did they test for? I've had IC for nearly 12 years now and this is the first I've ever heard of connecting Bartonella (yet no one will say which strain out of the few strains that affect humans) - or why it takes so many months to say which one it is. It took 4 weeks to diagnose and confirm a blood test of Cat Scratch via specialized blood testing and the one lab on the East Coast who does it (cannot remember who now - but there is only one that I was aware of 6 years ago when my eldest came down with it) - and although it was heavily suspected, it took that long to confirm the diagnosis via blood. We were all treated in the interim with AB therapy as well as steroids as I mentioned, with my daughter being hospitalized. So could you please explain if you know why it's taking 4 months to get back your testing?

Please, again, I am sooo not being snarky or rude - I AM truely interested in this - its just that no one will provide the information that many have asked other than "****says..." - who is ****and who is the doctor you all are seeing? Again, what studies are out there that are the basis of this claim? If there is something proven that can substantiate the claim of IC as even a remote possibility - then it needs to be brought to the attention of the entire medical community for further study. Every little milestone in this aspect will help each IC patient....no matter how small. :)

Hugs
Brittany