posted
While I am so sorry that some of you also have bladder issues, I have to say that your posts really helped me today. I have suffered for 11 years with "interstitial cystitis" as my main symptom (although that is by no means the only symptom...).
I picked off a tick (thought it was a tiny scab so I blew it off) had the rash, etc. 11 years ago and was misdiagnosed all this time - pretty typical story.
I came up positive for bartonella via the Fry test last fall and that was the beginning of my lyme odyssey. That was the Ah ha! moment since bartonella and lyme are "travel buddies."
I took Levaquin and experienced no pain in my bladder for the first time in 10 years. Unfortunately, that didn't get rid of the bart and I went on mycobutin/azithromycin in May.
The mycobutin/azithromycin combo gave me blessed bladder relief, however, the mycobutin dropped my WBC to dangerous levels and I had to be taken off of it. My doctor switched me to Biaxin and said it should go after the bart and lyme. That was 3 weeks ago and today I'm feeling very down and hopeless.
For the past week my bladder is flared up big time along with feeling emotional, angry, fatigued, back and hip pain, neck ache, etc. I feel like I'm back at square one. I know trying to deal with lyme is an uphill battle but I'm having a hard time with it. I'm usually pretty upbeat about the whole thing....
I herxed twice on the mycobutin but is was mostly body aches, chills, headache and fever - no bladder flares at all.
My question is: Have any of you had bladder symptoms while you herxed? I'm wondering if the change to Biaxin isn't stirring up those nasty critters and I'm experiencing die-off. I had almost 3 months with no bladder pain and this is really depressing.
My current doctor is a God send... she "gets" the interstitial cystitis/lyme connection but isn't real experienced on lyme/bart or the herxing. She didn't think the bladder flare is a herx. I'm really hoping it is because then there may be a light at the end of the tunnel. This sucks.
I have an appointment with a supposed LLMD in 3 weeks and I sure hope to get my questions answered and get a handle on what is happening to me.
Any input will be greatly appreciated.
Posts: 6 | From Northern Idaho | Registered: Sep 2008
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posted
Sorry to hear that you are having so much trouble.
I have bladder pain frequently. I got diagnosed with vulvar pain syndrome alone with IC 2years ago, then 1 month I got diagnosed with Lyme.
My bladder flared up about 1 week ago and was really painful. I finally got it settled back down. It is no fun when your bladder hurts.
Right now I am on Doxy 200mg and ketoconazole.
I hope you feel better.
-------------------- We are their voice, Please spay and neuter! Make adoption your first option! Posts: 61 | From Alabama | Registered: Aug 2008
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posted
I am going through something similar right now. I have a very irritated bladder. My llmd put me on biaxin (ART tested)for 14 days. He said the infection had spread to my pelvic floor. The biaxin gave me no relief from the symptoms, in fact, I would say the symptoms intensified.
My first urine dip was cloudy but it didn't culture anything. The second test, after the biaxin, was clear and didn't culture anything either.
This is extremely frustrating as it is pulling out my back every day. I have bartonella as well and it is showing as a priority for treatment. I just did a couple of sessions of rife and am still trying to recover from that before I try the rizol oil I have for bartonella.
Diana
Posts: 202 | From vancouver, canada | Registered: Jun 2005
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TheTruth
Unregistered
posted
"I took Levaquin and experienced no pain in my bladder for the first time in 10 years. Unfortunately, that didn't get rid of the bart and I went on mycobutin/azithromycin in May."
Maybe I'm missing something. You're symptoms went away on the levaquin? But you were convinced that the medication, despite completely relieving your symptoms "didn't get rid of the bart"? On what did you base this? How do you know it didn't get rid of it? Seems like you changed from a medication that was working wonderfully (i.e. completely relieving your symptoms) to different ones (which obviously haven't helped you nearly as much). I just can't figure out why...
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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GiveMeABreak - Welcome. I see this is your first post.
In light of the previous reply, it is a little unclear how you knew the infection was not gone, but it's my guess is that it was evident to you and that was just to be implied that symptoms returned - otherwise you'd be happy, I assume.
Anyway, I can't address your post as I'm toast. But, since it's your first post, I wanted to offer bit of a road map.
Did you find your LLMD through here or some other method to be sure s/he is familiar with the ILADS Treatment Guidelines?
I'll post many articles and links for you. Please take a breath first and just start slowly. You don't have to read it all at once, but it's a collection so that you have most of what you need to begin.
Also to be considered may be other chronic stealth infections. A good LLMD will be able to assess beyond just the tick-borne infections, too, if necessary.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
=====================
AFTER reading the Savely article, this will make more sense and, sadly, shows the state of treatment:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
posted
Another IC sufferer here. I'm doing pretty well with it since Lyme treatment... but it flares from time to time.
Just wanted to echo what Keebler said that you need to make sure this "LLMD" is following ILADS and that you hopefully got the name from a support group or from this board.
You want someone who is used to dealing with chronic Lyme treatment.
WELCOME!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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