Greatly helped by innovative antibiotic treatment.

[Allibeth]

I want to preface my spiel about my treatment by stating that IC is a catchall phrase -- i.e., it is can be caused by many different things (infection, chemical exposure, etc). Culturing techniques are not perfect (especially the traditional 2-day agar plate colony counts), so a "negative" culture may actually be a false negative. (I went to a "special" lab to get my culturing done -- the labs in my insurance network were not specialized enough to do the kind of culturing techniques I needed and I kept getting false negatives. I never would have known these were false negatives if I hadn't gone for more sensitive and precise culturing that produced a positive result.) Also, infection is not always easily penetrated by antibiotics -- especially short-term oral antibiotics (and antibiotics can burn an IC sufferer's bladder lining, so even when it is working the patient may think it isn't because of the pain). Sometimes it takes the better absorbability and high doses (since it bypasses the GI tract, you can give higher doses with IV than with oral antibiotics) of IV antibiotics to penetrate the bacteria (which may produce polysaccharide biofilms, making antibiotic penetration difficult -- if not impossible -- with oral antibiotics).

I've been an RN in Manhattan for several years so knew Attila Toth, MD's reputation for some time. Anyway, after about 7 years of my sister going from MD to MD where she lives (Florida) for vulvodynia/lichen sclerosis (confirmed with biopsy)/bladder urgency and frequency and being told her problems are not caused by infection, she made the trip to see Dr. Toth in 2000 and had uterine/bladder antibiotic/antifungal irrigations x5days, IV antibiotics x10days, oral antifungal medication and intravaginal antibiotics (I call it the "attack by land, sea, and air" approach). Afterwards, she felt totally normal for the first time in years. It's been 5 years, and she still can have pleasurable sex and sleep throughout the night. Her sclerotic vulval skin is actually supple again. She told her story on various portals and now knows many people with similar symptoms that have been helped by Dr. Toth's treatments. So, when I was diagnosed with IC in 2003 I saw Dr Toth -- after trying some of the more conventional treatments. I wish I hadn't delayed Dr. Toth's treatments as IC hit me hard and fast -- within months my bladder was half its normal capacity, and I had to go on disability from the pain. I tried many types of bladder installations (excruciating for me), Elmiron, restricted my diet, and was using tons of lidocaine. Then I finally saw Dr. Toth, and after 10 days of IV antibiotics, bladder irrigations with an antibiotic cocktail and antifungal medication followed by Flagyl gel inserted into my urethra, and intravaginal Flagyl I'm better. As my sister before, I posted this info on portals and have since met others that have seen Dr. Toth and have greatly benefitted. Many with IC also have paraurethral gland (analogous to the prostate gland in males) involvement, so he directly injects these glands with antibiotics when necessary. I know one woman that had terrible pain in her pelvis that radiated down her leg for 3 years, and after these injections she's better. Dr. Toth also treats spouses when indicated.

I contacted Dr. Toth recently, as insurance often won't cover the full cost of his treatment and I know his fees can be prohibitive to some. He offered significantly reduced fees to people with IC. If people have questions about my treatment or questions about coming to Manhattan (hotels, etc), please contact me. Also, Dr. Toth has a book that describes his treatment -- I've seen it for a few bucks used on amazon.com (his Website is geared towards couples with infection-caused infertility -- that's his main thing. But the same treatments have been shown to help people with infection-caused IC so don't let the emphasis on infertility scare you away).

Of course, I'm just one person with a story. If anyone is seriously considering seeing Dr. Toth but wants to hear from more people with IC that got his treatment, I can forward your email to others.

Hugs, Allibeth

[pottywoman]

Sorry, but I don't believe this. First if he came up with a cure for IC it would be broadcasted on the news and such. Plus other doctors could do the same thing in their offices and a person would not have to travel to him. I'm sorry but I've read way too many "cures for IC" things and I just don't believe it. Have seen about this posted on other sites. Plus IC was not an infection but the bladder lining damaged so I don't see how anitobotics could help. I just needed to say about this. Too many people post that they had great results with this and that and hardly none post that they had problems. My IC was made worse by one thing I tried which seems everyone else had help with.

[Allibeth]

Let me be clear: there's no grandiose claims about a panacea for IC. I'd like to emphasize that IC is a catchall phrase -- i.e., there are many causes. When the cause is infection -- whether from bacteria, mycobacteria, mycoplasma, or whatever -- the cause is often missed due to inadequate culturing techniques and/or inadequate antibiotic treatment.

Pottywoman, infection is one of the causes of inflammation.

I strongly believe that eventually many MDs will practice the therapies I outlined. It takes a long time -- sometimes decades -- for a treatment to become standard practice. I could bore everyone with the a gazillion stories to support this -- like how the researcher that discovered that most ulcers are caused by a bacteria actually ingested the bacteria to try to convince his cynical colleagues (nowadays it's commonly accepted that h. pylori causes most GI ulcers), or how it took decades for a few researchers to convince the rest of the medical community that inflammation and a strain of chlamydia is linked to heart disease, etc. This slowly-evolving knowledge has changed medical treatment -- people now get CRP tests to check for inflammation with heart disease, and GI patients get an h.pylori test and antbiotics for ulcers -- this was not done until recently.

I come from a family of medical professionals. It never ceases to amaze me how new things are discovered about old ailments all the time, and how often the medical industry has changed its mind with certain matters. It also amazes me how slow change is adapted -- the FDA takes a long time to approve medications, medical associations take forever to revise treatment guidelines (with good reason -- it takes a long time to receive money for studies, then complete those studies and get them published in a peer reviewed medical journal, present data at medical conferences -- it takes time to standardize new treatment protocols). This doesn't mean that the treatment isn't worthwhile.

[icnmgrjill]

Allibeth,

I understand what you're saying... but if you only knew the number of patient stories that we've had that are exactly the opposite of yours... you'd understand our caution. I've never heard of Dr. Toth.... and his approach is certainly aggressive. I, for one, would be far more compelled to learn more if he could produce some research studies that prove infection IS present, since one of the best universities in the world (University of Maryland) spent five years performing the most extensive testing they could searching for bacteria in urine and in bladder biopsy samples... including looking for random fragments of bacterial DNA. Only a few, varied, infections were found in their very large testing sample.

Thus, I have a few questions:

(1) What tests does he use to confirm the presence of any infection? What type of infection is it?? Heterogenous, diverse colonies?? biofilms?? or single pathogens??
(2) Are there any published research studies that confirm these results?
(3) Has he made any attempt to present his therapeutic methods to the IC research community?? Honestly, I've never heard of him and have been going to conferences for years.

After so many years of seeing patients get their hopes up while spending thousands of dollars for untested therapies that did not help...... we have to be cautious!!!

Jill

[Allibeth]

Jill, thanks so much for taking an interest in this. I'm glad you're cautious -- so am I. As an RN for 14 years, I've witnessed my share of medical horror stories. Caution is always good -- sweeping angry cynical "you're 100% wrong" statements are what get to me. It's a little too "Tom Cruise vs. Brooke Shields", which I don't want to get embroiled in. Honestly, I've been reluctant to post more because of how heated things can get.

Dr. Toth has studies -- they are outlined in his book. If you want his contact info please email me -- I don't think I should post it without permission from ICN and Dr. Toth.

BTW, I'm a participant in the EPIC study at University of Maryland. I grew up in Maryland -- my mother worked at NIH and FDA and my father worked at NIMH so I grew up around that research community.

Thanks, Allibeth

[Katrina]

I definatly agree that IC has multiple causes....and I think for some of us we have more than one. My experience so far has been anything that has helped someone has hurt someone else.

Approach things with caution...
Thanks for sharing

[Allibeth]

If Dr. Toth is not known so much in the IC community it's because, as mentioned, his specialty is actually infection-caused infertility (which uses the same treatment protocol). Deb mentions some of Dr. Toth's credentials, which I was remiss not to do. He is affiliated with New York-Presbyterian University Hospital of Columbia & Cornell in New York, which U.S. News & World Report reports is the #7 hospital in the U.S. in this week's edition (#8 in the country for GYN, and #5 for urology). Dr. Toth isn't an isolated MD practicing in the basement of a warehouse -- he has an office off Park Avenue on the Upper East Side of Manhattan, and his clientele includes health professionals (like me) that thoroughly scrutinize medical professionals' credentials and practice methodology.

BTW, I've been to some of those MDs recommended on IC Websites, but only Dr. Toth was able to help me. So if some people are concerned that I was duped by a quack -- well, I assure you that the quack wasn't Dr. Toth in my case.

[Allibeth]

Just a reminder that Dr. Toth is offering a treatment discount for people with infection-caused-IC (even I didn't get a discount last year), and many insurance plans will reimburse for part or all of the bill. This man doesn't need to increase his patient load with IC patients -- he has plenty of infertile couples keeping him busy, his IC offer is out of compassion (and my pleading!) Just didn't want that info to get lost in the shuffle.

[vm]

I've looked at his website and am unable to find links to his research. Can you help me out? There is a research page, but it doesn't look like any of it is authored by him and none of it is related to IC.

[vm]

Yeah, that's the website I was looking at. I didn't see any research on antibiotic treatment of IC - I was wondering if anybody could link me to some of his published work regarding IC.

[vm]

Oh, I thought Allibeth mentioned that he has studies that are outlined in his book. I was hoping it was published work we could all read to find out about the efficacy of his claims in terms of IC.

Is his main stance that a variety of medical problems are because of hidden or other infections? I noticed he feels that infertility and miscarriages can be the result of hidden infection.

[vm]

He has treated some IC patients (and gotten them all well I will add) only because he felt sorry for them.

He got all the IC patients he treated well????? I am surprised he hasn't published more about this since no other doctor can make that claim.

[Allibeth]

VM, Dr. Toth's research is in his book (the book is shown on his Website and some online booksellers). It's for infection-caused infertility, not IC. But the same diagnostic methods and treatment plan works for infection-caused IC. I feel fortunate that I live in NYC and knew infertile people that saw him, otherwise I wouldn't have ever known of him b/c he doesn't advertise himself as an IC specialist. I hope Dr. Toth becomes better known in the IC community, because honestly the so-called recommended IC specialists just caused me more pain.

By the way, the pathogens he found in me were: 2 bacteria, a protozoa, and mycoplasma. Another lab also found the 2 bacteria (and three other labs didn't) -- none of the others found the protozoa and mycoplasma. He also said I have low "good bacteria" and put me on probiotics -- I was totally out of balance and inflammed.

[patricia1]

I agree that IC is and can be caused by multiple things. I for one do not believe that my IC was caused by an infection but instead by abdominal surgery. And I dont think that it is because of our attuides about not wanting to approach different medical treatments. This specific treatment has never been mentioned as a treatment for IC. I do know some have done the antibotic round but not as extensive as what the 2 of you have done. There is a reason the word "caution" is used when talking about this. As with anything new research needs to be done by the person thinking of doing this. I for one would try anything if I thought it would help my IC. But my thinking that my IC is NOT caused my infection I dont believe this would help me and it would be a waste of my time. And I do realize that the FDA takes forever in getting new medicine and treatments out there, but I have never heard of this one and I for one would USE caution in considering this. And believe me I am not one who would not seek treatment as I have the Interstim which IS a very hot and sore topic on here, so I have tried something out of the norm when trying to help my IC...

[ICLori]

Thank you all so much for posting about this. I find all the theories about what may cause or help IC, fascinating.

I have always wondered about a bacterial connection with IC. I don't know what the answer is, but I am intrigued by the theory. I know that one researcher (whose research was never able to be replicated) found some cell-wall deficient bacteria in tissues from the bladder of IC patients. There was an urologist who posted here awhile back (but met with a hostile response and left - I am sorry for any hostile responses you might get in response to your posting here, antibiotic treatment is frowned upon by the majority of people here) who felt that IC was really just an infection that had burrowed deep into the bladder walls and no longer showed up on urinalysis tests. Then there was a study that showed that quite a few IC'ers got better on treatment with Doxycycline - that was an interesting study. So I remember these things, and wonder if there might be a bacterial connection after all, at least in some cases of IC.

I am glad you posted this information. I find it intriguing.

Blessings, Lori