Getting closer to an answer for me

[Spacechimp]

I have been doing broth cultures (where infection was found) and taking antibiotics for about 6 months. I am also taking supplements to heal the bladder. I felt I had to try this route because I didn't want to look back on my life in 10 or 15 years if I was still dealing with this bladder pain and ask myself "what if I would have tried the broth culture thing?" I have had improvement but not as dramatic as others.

I will try to make this short: I have had bladder pain along with many other "roving" symptoms for 10 years. I had a bullseye rash in my "nether region" and was hit with bad muscle aches, diarrhea that lasted 4 days when this all began - then the bladder pain from hell. I had never had a bladder infection before this hit me and it was sudden and severe. Of course, the 6 or 7 urologists I've been to told me I "didn't have an infection."

I had a Western Blot lyme test which came out negative 3 years ago and the Igenex test for lyme 1 1/2 years ago which also came out negative. I have heard that those test will come out negative if you have had it for a long time - in my case it had been 7 - 9 years since my rash, because your immune system by that time is so compromised that you don't create antibodies anymore. I have all the classic lyme symptoms AND interstitial cystitis IS a lyme symptom. The doctor who performed the Igenex test told me lyme can CAUSE interstitial cystitis.

Well, I just did a new test that has been developed to look for lyme co-infections it is done through Fry Laboratories in Arizona. My results came back this week and I have level 3 bartonella which is a lyme co-infection. According to my doctor, this means that I most likely DO have lyme as well.

I believe this is the underlying cause of my bladder pain and now I am hoping that the right antibiotic will kill the bartonella and then I can go after the lyme. The sad thing is that if I would have been properly diagnosed 10 years ago I could have gotten rid of this thing in a month or two. Now that it has gone on this long - well, I don't know. We will see...

When I got the results I cried for an hour. It was relief, worry and grateful feelings I was having. I feel vindicated in knowing that I am not crazy. For the rest of you - believe in yourself, keep knocking on the doors to find and answer and trust your intuition. I always knew that I didn't just get chronic bladder pain overnight for no reason. I KNEW I was infected with SOMETHING.

I will keep you posted on the next leg of my urinary journey...... :pray:

[hdb1982]

I was diagnosed with cervical dysplasia 3 months prior to my IC symptoms. It is believed in my case that my body was fighting the dyaplasia so hard my immune system was depleted and allowed the damage to the bladder lining. Pretty m,uch my immune system was fighting other things so hard it allowed something to eat my bladder lining,

[Anthrop42]

Hdb1982,

My IC started after recurrent UTIs which also coincided with a cervical dysplasia diagnosis/HPV. I've read articles that implicate HPV in bladder cancer. Seems logical that HPV may cause bladder damage in addition to just bringing down the immune system.

Spacechimp,
Glad you finally got answers! Did you need a doctor's referrel to get the lab test done at Fry Labs?? And was it expensive?

Cheers,
Aline

[PlainJane]

Spacechimp,

What bartonella symptoms do you have? I had a bartonella rash at one point in the recent past (about a year ago or so it stayed for the longest time). I have chronic insomnia (insomnia for 10+ years), anxiety, agitation.

Erica

[mich2604]

sounds like my lyme nightmare.

I was bit in 2000, saw the tick and everything. NO bullseye rash so dr said no lyme , did a lyme test and it was negative. I had a horrible sore throat, chest pains, and felt horrible. This went on for months. Finally i went to an ENT and he gave me a stronger antibiotic and told me to take claritin and it went away, or so i thought.
on and off sore throats, and bad boughts of bronchitis, but i was functioning, couldnt gain weight, but functioning. One UTI, but never cultured, just high wbc, only symptom was lower right back pain.

then in May-aug 05 I had two horrible boughts of bronchitis and never was the same since, bladder symptoms emerged in oct 05.

I have heard of the fry test, does the lab take insurance?
My new dr thinks I have bartonella, although I test negative for it.

I do think it is possible that our bodies are busy fighting other things, and it allows opportunistic infections to eat our bladder.

[Spacechimp]

Yes, you need a doctor to get the Fry test. It costs $500. I'm not sure if insurance will cover it yet. I am waiting to get the codes to turn it into my insurance.

Ten years ago I picked a very tiny "scab" off and ended up with a bullseye rash and around that time I got very ill with muscle aches, chills and severe diarrhea that lasted for about 4 days. Then literally overnight the bladder pain started that never went away. I've had roving symptoms along with the bladder pain for the past decade. Back then, the doctors I went to didn't know what the rash was - the gyno said it was "dermatitis" and the dermatologist said it was "folliculitis" even though it didn't look like either. I was not thinking lyme disease at the time at all.

It took me 7 years before my I discovered that lyme causes IC and then had to go back and pull records where I could and piece the timeline together regarding when I got the rash, when the flu like symptoms hit, and when the bladder pain and other symptoms hit. Fortunately, I was buying a condo and went on a couple of vacations at the time so it was easy for me to get the dates together.

My western blot and Igenex tests both came back negative for lyme but they say if you've had it for a long time (by then it was 7-8 years) that your body won't make antibodies for lyme anymore. I was really surprised to find I had bartonella as a co-infection to lyme.

I have bad insomnia but other than that I don't really have the typical bartonella symptoms. My symptoms are more lyme symptoms. Although, about 3 years ago a urologist did give me doxycycline - not because I had an infection (according to him) or because he thought I had lyme, it was because a peer-reviewed journal he read said that some people with IC get better on doxy.

Well, my bladder did get better on it but what was weird is that after about 2 - 3 months I had shortness of breath, chest pain, severe insomnia and rage which ARE bartonella symptoms. I freaked out and thought I was having a heart attack but the EKG and all my heart-related tests came out normal. Anyway, I went off the doxy because those symptoms scared me and the bladder pain came back even worse after a few months. I'm not a doctor but I wonder if the doxy pushed back the lyme and made the bartonella rise up....who knows?

[lili]

This site stimulates so much interesting discussion. I tested positive for HPV when I was 19 years old (now 44yo). 2 years later I had dysplasia which was treated by freezing it. I felt like the 2 were connected but was assured that there would not be long term complications. I have had negative paps and just recently tested for HPV again, negative. I wonder if exposure to HPV is a commen denom. among IC patients? Lili

[mich2604]

Spacechimp- I had the same symptoms on doxy in Nov 05. Really bad chest pressure and shortness of breath, I really did feel like i was going to die. It would come and go, but would wake me up. It was so bad I slept with my phone in my hand in case I had to call 911. Per my dr it was a herx and not allergy. Those new symptoms went away after I stopped doxy. I had to stop due to stomach problems.

I took doxy about a month ago and did not have these symptoms, but it was a lower dose and im not as sick as i was back in nov 05.

I find it interesting you had similar symptoms. Is the shortness of breath a bart symptom?


My bladder stuff did seem to get better on doxy now that I remember, and it did get worse after I went off of it.

Kudos for you for putting everything together regarding your health.

[meg31]

SpaceChimp: What antibiotic will you be taking for the Bartonella? Congrats on getting to the bottom of your problem!

Erica: I have had chronic insomnia and anxiety for about 5 years, along with other common syptoms of babesiosis and bartonella (scalp irritation, night sweats, rashes, etc.). I had tests done for co-infections (all negative). Is it common to have false negatives for co-infections? Did you test positive immediately for Bartonella and what test did you have done? I'm overwhelmed by the concept of co-infections. I seriously don't know what's growing in my body at this point!

Mich2604: Your story sounds so familliar. I removed a tick from my head in 1999 (no rash), followed by horrible bronchitis symptoms, sore throat, fever and ear pain. I was diagnosed with Scarlet Fever, viral bronchitis, mono, strep, you name it. No one ever thought I had Lyme. I wish I could go back in time with the knowledge I have now!

[Spacechimp]

To answer your questions:

Yes, shortness of breath is a symptom of bartonella. I also found a recent article about bartonella that does talk about a lot of other symptoms it can cause including bladder pain:

http://www.publichealthalert.org/Bartonella.pdf

I started taking 500mg Levaquin 1 time a day last Saturday. That is the antibiotic I was prescribed for bartonella.

I am almost afraid to say it because I'm afraid I'll curse myself BUT my bladder feels really good. I am holding my breath thinking that maybe this will be the magic bullet. I am not going to get too excited just yet because I have had this for 10 years so it will probably take me a long time to get rid of it. But this antibiotic feels better on my bladder than any others I've taken which includes: Macrobid, Macrodantin, Cipro, Minocycline, Doxycycline, Augmentin and Amoxicillin.

I will keep you all posted.....

[mich2604]

spacechimp thanks for the link to that article. My new lyme dr doesn think i may have bartonella.

Im glad the levaquin is helping, i hope it continues to help. I have a friend who treated with levaquin and it really helped him. he had lots of bladder and GI symptoms. I hope this is the magic bullet for you.


I was on levaquin when my bladder stuff started, i think i lasted two days on it....i had horrible breathing, my feet felt real heavy and i felt like death.


thanks again:hi:

[PlainJane]

Meg: I only had the Canadian co-infection tests done and they were all negative except to show a past infection of Rocky Mountain Spotted Fever. I just got back from seeing my American Lyme doctor and he had a lot of tests run for me (Igenex co-infections, Fry Lab test, viruses too). So I'm waiting on those results. He thought my sudden nausea and vomiting could be caused by bartonella. We'll see what those tests show but it's not uncommon to test false negative. I find it confusing too. But my insomnia is unrelenting and that is a bartonella symptom so who knows?

My doctor wants me to start on IV rocephin for 3 months minimum.

Erica

[Stephp1]

Hi there,
Im fairly new to the site. Just got my results from Germany, as Im based in the UK (Melisa Test for Lyme) apparently it´s the most accuarte test around at the moment. I tested positive! I would definitley recommend this test if you have symptoms and are testing neg with other tests.

Spacechimp: I completely know how you feel. I was sad to find this out today, but happy at the same time to know that Im not going crazy! How is your treatment going anyway?

Im gonna try and get the co-infection test done now through Fry Lab in Arizona.

Anybody else had any success treating lyme and/co-infections?

Steph

[Spacechimp]

Yep, the Melisa Lyme test is next for me. I can't do it while I'm on Levaquin for the Bartonella because it will mess up the results so I have to wait another month.

I feel so much better now that I'm getting rid of the Bartonella. I really didn't realize how sick I was. Not just the bladder but all over.

I am hoping that I only had Bartonella and not Lyme. I've been sick for 10 years and if you have undetected Lyme for that long, it's not good, very hard to get rid of.

Definitely do the Fry test Steph. It was way worth it to me. I'll let you know when I get the Melisa Lyme test......

[mich2604]

What lab does the Melissa testing?

[Spacechimp]

The name of the laboratory who does the Lyme test is Melisa Laboratory. You can Google it.

[Stephp1]

Hi there,

I sent my blood samples x4 9ml tubes to be tested for the European and USA strengths of Lyme to lab Bremen Germany. The Melisa test cost about 180 pounds to be tested for all strengths, but definitley worth it. They send a very comprehensive report with graphs etc....not that I really understood everything. Im not sure if Im aloud to post links, but if anyone wants the details please contact me. The dotcor in the lab also sent me a recent article which is very interseting too. If you search under lyme AND melisa test you should get to the right link.

Ive been on doxycyclline for one month with no improvement.. due to see an infectious disease specialist soon, but over here in the UK I dont think theyre used to treating lyme. Im not too sure what my plan of action is until I see them. I think I need to get the co-infections test done too and will go with Fry lab.

Thankyou everyone for all your advice and support. Please keep me posted on your journey.

Hugs,Steph

[Stephp1]

Just realised when I read back over posts that im able to post links etc. Sorry...fairly new so wasnt sure.

Hope these help.

Any other questions..please let me know.

Steph:)

http://www.melisa.org/borrelia-lyme-disease.php

If you would like the article that the doctor from the lab sent me let me know...it is just that it exceeds the limit.