Wednesday, June 3, 2009

Interstital Cystitis and Lyme- preliminay report

I would like to comment briefly about this disorder and its potential relationship to Lyme disease. I have been treating at least one patient who has reported an excellent response to treatment. Willie burdorferf, the microbiologist who discovered the Lyme spirochete reported in 1988 that Borrelia burdorferi, the bacteria which bears his name was found consistently in the urinary bladders of mice.
A great deal of research has supported the notion that Bb widely disseminates into many organs. The co-existence of urinary tract disorders in patients with Lyme disease is well documented. There is evidence that Lyme has been found in stomach, colon and gallbladder biopsy samples. To the best of My knowledge no studies have been undertaken to examine bladder tissue samples for the presence of Lyme. At least one study has demonstrated positive Lyme PCR in genital secretions. This may represent contamination from the urinary tract. PCR tests for genitourinary STDs, Chlamydia and gonorrhea, from urine samples have existed for years(this demonstrates that urine contamination from other sources is frequently present). Positive Lyme PCRs have been obtained from urine specimens. Overall, a body of evidence suggests that Lyme can- may reside in the urinary bladder.

Interstitial cystitis is a fairly common disorder. It occurs more commonly in women. It's name is derived from the minimal pathological changes seen in bladder biopsies.
It is associated with symptoms which at times are crippling. Such symptoms may include: pain in various locations, frequency, pelvic pain, bloating and other related symptoms. IC(interstitial cystitis) patients are thought to have a higher incidence of fibromyalgia and chronic fatigue syndrome.
The standard thinking is that the cause is unknown; although it is said not be due to infection and not respond to antibiotics.

These symptoms overlap with several other disorders: chronic pelvic pain of unknown cause, chronic prostatis or prostatosis in men and chronic urethral or para-urethral syndrome seen in women.

Standard urinary tract infections are caused by bacteria that normally live in the colon. Examples include: E. coli and enterococcus. These are classic gram negative and gram positive bacteria. They can be easily grown in standard culture medium. standard antibiotics only treat gram negative bacteria- such as Bactrim.

Lyme is very difficult to grow in culture media, even by expert hands. And- if it is found only in the bladder wall, such cultures will be useless.
Other L-form bacteria have also been implicated in these syndromes, including: Chlamydia and Mycoplasm species. These too are very difficult to culture.

Physicians typically prescribe antibiotics for 7 to 14 days for urinary tract infections. Experience with Lyme disease shows that short courses of antibiotics are not effective. Only in prostate infections have longer courses of antibiotics been used. Physicians are aware of the prostate-blood barrier and bacterial sequestration within the gland. Antibiotic courses up to 90 days have been used- with some success and frequent relapse.

My patient has established IC. She also tests positive for LD by Western Blot and has a variety of other symptom commonly associated with Lyme disease. She had been miserable for two years with a horrendous quality of life. Experts in IC had been unable to help her.

She has been treated with the usual Lyme antibiotic combinations. The combination of Biaxin with Plaquenil was incredibly effective for the IC symptoms and life altering.

My thoughts are that IC and related conditions are caused by L-form infection of perhaps Bb and other L-form bacteria. Biaxin is not an antibiotic used for urinary tract infections in the typical sense. Minocin has also shown some promise. Cipro has been used for both Lyme and urinary tract infections, but I have noticed a very significant "bladder herx" when patients have been treated with it. Perhaps it can be tolerated later in the course of therapy.

I have seen evidence that IC and related syndromes respond to antibiotics. Long term antibiotics are required- patients need to realized that symptoms will not improve over-night.

Lyme disease should be considered in these patients. This is a work in progress. I cannot claim a lot of experience here. However- my patient has reported that other IC patients, with whom she communicates, have also experienced improvement with the combination of Biaxin and Plaquenil.

12 comments:

Joanne said...

Hi Interesting read as usual.

I have been treated for lyme after a clinical diagnosis as negative NHS and Igenex tests although 20 months steroids given following wrong diagnosis could have scewed tets.

Your comments on bladder infection interest me.

I was treated on Amoxicillin for 7 months before seeing LLMD and then Doxycyclin but then Amoxicillin and now combination of Amoxcicillin plus Clarithromycin ( this was given for chest, throat and sinus infection)


Amoxy was brilliant on arthritis/ muscle weakness but Doxy and Clarithro have been good on other symptoms.

When I started Clarithromycin I found that apart from improvements in sinus, throat (swallowing problems) and chest tightness I also noticed pain in gall bladder area went after sufferring many years and 2 scans saying no stones.

Although I had realised bladder problems were worse when symptoms were bad I had not fully appreciated the connection. On Clarithromycin symptoms of bladder weakness have improved beyond what I have felt for many years possibly pre tick bite although who knows I could have been bitten earlier. Nevertheless to go all night without the loo after two hourly or less visits is rather significant.

I am so enjoying my good health after 6 years struggles.

A big thank you for all you are doing, which with other such dedicated Lyme Doctors is of benefit to all Lyme Patients.

EyeBob said...

What exactly do you mean by "bladder herx?"

bt

bitten said...

I have suffered from bladder pain that doubles me over in tears since I have had Lyme. I cannot pee without severe pain. I know it is connected to Lyme. We have discussed this but with all other troubles it has gone by the wayside. It is serious now and needs treatment.

BTO said...

Hi, I have been Diagnosed with MS and have 8 positive Lyme tests. Dr's where I live do not recognize Lyme. So it has been along battle.

My Nuero symptoms have just came back after being better for a few years.

I just saw a Urologist because I have been having alot of pain when I pee and my Kidneys hurt. They just called me back to say I have a Bacteria in my Urine they have never seen before.

They said not to worry they have our Local Infectious Disease Dr looking into it. That guy does not like me and I am scared that he is just going to blow it off like he has me.

What do I do next?

Lyme007 said...

Interesting. Do you have any experience with tight pelvic floor muscles? This is my worst symptom. I also am unable to gain weight and Im always hungry.

I have IC as well.

Katie said...

Antibiotics have an antiinflammatory effect while you take them, making IC symptoms disappear temporarily. Does her IC go away AFTER she's taken all of the antibiotics?

Kathryn Williams said...

I have IC and am desperate to find a cure. I am only 24 and cannot exercise, have sex, and walking is even painful. I don't know what to do about employment. I am willing to try anything because I feel like my life is ruined from here on out.
I also have gastritis, IBS, severe allergies.
Can you lead me in the right direction? I should get tested for lyme. What tests should I get?

Namaste said...

Call Nurse Practioner Ruth Kriz. Get an appt. Stop eating gluten ASAP. Good luck, hang in there...
Feel free to email me if u want to chat about our condition and solutions. dreamsdocometrue32@gmail.com

sirhalloween said...

The first Lyme patient in MN in the mid 1980s was Linda Hanner who wrote a book. Her first symptom was IC. Dr. Staubinger DVM PhD later showed in Beagles that bladder wall was an excellent place to recover Borrelia post antibiotic therapy. Although classical spiral forms cultured out, I don't know if cyst forms were present. Dr. Martin Fried showed in children with Crohn's like presentations that spirochetes were embedded in their GI gut wall, a place with similar structure to the bladder wall, and these were visualized with silver stain as spiral forms. TG

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Cindy Goode said...
This comment has been removed by the author.
Cindy Goode said...


I have Lyme Disease and other coinfections. I'm PCR positive ...as well as Western Blot. I've had bladder and kidney problems/pain/spasms since my Lyme diagnosis 20 years ago. I had a congenital kidney defect that was surgically corrected at age 13. I've had Lyme since childhood but was reinfected at 25yo and that bite put me overboard...had a large bullseye rash and found a tick in embedded in it two weeks later.. Long story short I've always thought the bladder and kidney pain and frequent urination were due to the kidney defect even though it was surgically corrected. I've had constant urinary tract infections as long as I can remember..Or so I thought they were.. I never had them tested.. Just took abx and pyridium. The past several years things got extremely worse with the bladder and kidney. I kept taking Cipro and pyridium to no avail.I'd always kept it on hand due to regular "uti's".. All my life I've just taken it when needed. I wonder now if there was any infection.. I would just take it...then stop... I'm very curious about the "bladder herx" from Cipro. I was honestly hit and miss with taking it for awhile but when the pain got so severe I made sure to take it regularly. This has been over the past two years. The pain got completely out of control and I spent months bedridden due to the iC.. Finally got in with my urologist and was diagnosed with IC. ...I'm doing better in comparison to where I was with the IC... Wondering if I could possibly be of help with the research...?? If I can help and find a connection I am sure willing to help. Lyme disease is horrible and debilitating enough. The IC in addition ?? .. It's too much to even explain.. I honestly thought I was going out of my mind from the pain.. I just pray I continue to stay better.. Still pain and frequent urination.... Now it feels as it "normally" did.. like a regular uti... If there is a connection I sure would be willing to help. People with IC are totally desperate.. As are those with Lyme.. I pray for cures in my lifetime...