How Dr. Ragi Dogweiller is treating me - you want to know about this

[fcombs]

I went to see Dr. Ragi Dogweiller on July 15 in Knoxville. It was a car trip from Nashville.

Dr. Ragi came in and met me and we exchanged pleasantries, and she got down to it. And guess what, she started at the ....beginning. Imagine that!
I do not know if Dr. Ragi's approach comes from being trained in Europe or not, but the first thing I noticed was that I was not met at the door with a catheter. This was quite different from any urologist I have ever seen. We talked, and I told her how my pain began which I will share with you also.

My chronic pain, urgency and frequency began in 1994. I think I already had "IC," however, I had not begun to experience the debilitating symptoms. I went that summer for a regular visit with my GP, and he came in and announced that I had a UTI, and he was giving me Augmentin. I was confused because I had many UTIs in the past, and I always felt a lot of discomfort with them. How could I have a UTI and not know it? But, I went ahead and took the Augmentin. At the end of the week when this "treatment" was finished, I was in so much pain I could hardly bear it. I was also experiencing urgency and frequency. And that's how it began. As a result of the pain, urgency, frequency, fatigue, and general sense of unwellness, I had to quit work.

As I told Dr. Ragi this story, I noticed her begin to look very thoughtful. When I finished, she said, "I think you might have a problem with yeast. The fact that the Augmentin set off the pain makes me think this because antibiotics cause this problem." Since then I've read a lot about Candida Albicans. And I have been totally fascinated by it - by the problems it causes, and how very much like me the whole candida story sounds. But, still after 13 years of pain and suffering and feeling generally awful with all the sides of fibromyalgia, IBS, etc., I was ready to listen and to be open to something new. I mean nothing else has made any sense. All those instillations made me sicker. My bladder was ruptured during hydrodistension. Elmiron made me sick - yes, I know about breaking open the capsule and putting it in water. But, I came to understand after talking to Dr. Ragi and doing my own reading that perhaps our unique sensitivities to medications are not so much sensitivities as a malabsorption problem.

The bottom line is if you feel like all your problems began with your stomach, and you are still having those problems along with all the attendant ones including IC, fibromyalgia, chronic fatigue, IBS, you need to find a doctor who believes that this systemic yeast overgrowth is a real problem.

I started taking the medication - Nystatin - reluctantly. And after doing a lot of reading, I have put myself on a diet that precludes sweets, starches, bread, and just carbs in general. It's so hard because my body craves potatoes and pasta. Dr. Ragi seemed to think that the sugar craving was another indication that there was a yeast problem - a systemic yeast problem. It's not the old vaginal yeast thing we've all had - this one goes systemic and can affect all our organs.

I can report that I am doing a little better. Slowly, but surely I can feel things turning around. The awful bladder pain in the morning has let up a bit -now I just feel a little urgency. The horrible stomach cramps that doubled me over every I ate and sent me running to the bathroom are pretty much gone. No more diahhrea. And my head feels clearer. I have to say that every symptom I was experiencing has improved to some degree. And here's a little bonus - I've lost weight. I have tried to lose weight which I have always thought was related to my illness for years. I had always been very tiny till I started getting sick, and my weight will just periodically, for no apparent reason shoot up. Oh yeah, that bloating we all deal with - much better, too. I actually look normal and not like a 59 year old woman ready to drop a baby.

I know this sounds too easy after everything we've all been thru, but maybe Dr. Ragi is onto something. I like her approach, and she is very warm and approachable. She does not become aggravated if a patient adds something or makes a suggestion, and she encourages reading. She told me to get the book, "A Headache in the Pelvis." She has also suggested that I incorporate physical therapy for the pain in the joints and muscles, and she will consider doing trigger point injections once I start that therapy if I still want them. And she wants me to do something that involves very slow movement and no impact - like Tai Chi or Yoga. She also does hypnotherapy. She is a multidisciplinary physician - and I love that. She combines traditional medicine with alternatives.

All I can say is, I am pretty much convinced that she is right about the yeast problem because I am getting better, and I was so sick I was past doing anything. And if I did push myself to do something, it put me in bed for days.

I know many of you are going to be skeptical, but I had to share this with you because it's real and I'm experiencing improvement in a lot of debilitating symptoms. It's worth a shot. It's not like the treatment is invasive.

I'd like some of you to google "systemic yeast infection" and read and let me know what you think. I am especially intrigued by the fact that this stuff can grow tenacious pointy roots called rhizoids that are able to puncture the wall of the stomach and cause a leaky gut. Hmmmm Something put little holes in my bladder which is a very close neighbor to my stomach. Could there possibly be a relation? I don't know. I am reaching here, but it just makes good common sense to me. If, indeed, this is true - about the rhizoids puncturing the lining of the stomach, then you just have to wonder what could happen if this stuff is systemic and affeting more than one organ. I have sent my report and this very question to Dr. Brookoff, and I am awaiting his response by email. I will happily share it with you if you would like to know what he has to say.

Feel free to email me at my regular email address if you would like to do so.
That is fayecombs@comcast.net. I'm not a newbie to this thing; I was a State Coordinator for the ICA from 1995 till 1998, and I have attended many out of state workshops. I'm as surprised as anybody could be that this
anti-yeast pill and a change in diet could make a difference in all my many and varied symptoms.

I sound like I am selling something, however, I am selling nothing. I am just sharing a recent happening in my IC journey, and I hope it helps somebody.

All my best to all of you,

Faye Combs
Nashville, TN

[mich2604]

thanks for sharing, I think this is also an issue with me. I get hungover from eating sugar and carbs. My symptoms started after two rounds of antibiotics for bronchitis. I was dizzy and had head pressure, my dr thought it was an inner ear infection so i was put on another week of antibiotics, a month later the bladder stuff started.

I also have lyme and the symptoms are so similar its tough to know what is causing what.

[Claredale]

Dr. Ragi used to be my doctor for 5 years. I was so sad when she moved across the state! We still exchange emails from time to time. She is definitely different from any doctor that I have ever known! I used to look forward to her hugs! I am so grateful that you are getting to see her. She used to have a yoga tape/cd for IC patients.

She did my implant and when the doctor that took her place here didn't work out, she recommended another one for me. He isn't Dr. Ragi, but he is trying! Most of the patients that I know used to see her go to the doctor I go to now. Her prior office definitely didn't get even close to replacing her!

Hugs! T83

[Sarojini]

I also saw Ragi when both she and I were in Memphis, and she was amazing -- used to actually look forward to going to the doc!! LOL

Now she's in Knoxville and I'm in North Carolina... I definitely miss her.

[mimimama]

I am totally on-board with you! I've known about yeast for along time and know it is a major issue for me. I am so glad you found this incredible doctor! Hooray

[akrose]

Mich- your story is so like mine. I had sinusitis with facial cellulitis in March 2005. I was put on high dose Augmentin, then after 2 wks the doc added doxacillin, and after 2 wks, then a fungal infection down there, then on March 31, 2005 woke up with the most burning pain in my urethra, that has not let up. It is so amazing how our stories are so similar. Aileen

[Briza]

Aileen, Mich
I have a similar story...I developed severe debilitating headaches, so bad that I could not stand up without holding on to something,and some fever after returning from a trip from Mexico and after being tested for everything under the sun, from West Nile to typhoid and cholera, and since I did not repsond to migraine meds, my GP and I pretty much determined that sinus problems were causing the pain, especially because since I started teaching I had had yearly bouts of bad sinus infections...bloated face and eyes and headaches but nothing like the headaches I had 4 months before I got my first IC symptoms. It was the first week of school, so we treated it very agressively because I was so worried about missing work so early in the school year, with antibiotics, decongestants, allergy meds, flonase, Ultram, and pain meds for migraines, dramamine, and who knows what else. After two weeks or so the headaches went away but would appear periodically between the time school started and THanksgiving vacation, and during Thanksgiving vacation I developed my first IC and vulvodynia symptoms. Of course I have no idea if there is any connection and I have other reasons I think I developed IC, but when reading stories similar to mine, I wonder if there is a connection between all the meds I took for the headaches and dizziness and my developing IC. I can't wait for the day when any connection is found, regardless of the cause..there are probably many but I look forward to the day that some of our triggers are validated.

[JanL]

Faye,
Dr. Ragi was also my doctor when she was in Memphis. I miss her and her hugs so much. She also tried the Nystatin with me. I did not do the diet as strict as I should have. I did get the active good bacteria that is kept in the fridge in the pharmacy at Target (can't think of the name, but she recommended it) to take along with the nystatin. There is a book called "Women and the Yeast Connection" by Dr. Crook. He was a doctor in Jackson, TN and just died in the last few years. He talks about this systemic yeast problem and even mentions IC in part of it. I think there may be more truth to this theory than we realize. My IC started after a hysterectomy and bladder suspension (that was not done correctly), but I took antibiotics for about one year for what the doctor thought was cystitis. So....who knows.
Give Dr. Ragi a hug and tell her that we miss her in Memphis.

Janice

[Momelf]

Faye,

Thanks for sharing your story. I've known that candida is a problem for me and have been through rounds of "cleansings." I don't seem able to kick the sugar habit completely, so I think it keeps coming back. Do you know if there is a test of some kind to show if you have it? Or how bad you have it? Right now I'm on a gluten-free diet (gluten-sensitive) and in the past month have given up meat/most dairy (causes inflammation). And today I'm hurting again. Well, at least the pain motivates me to seek other alternatives.

Thanks,
Darlene

[fcombs]

First of all, I am consulting with two doctors - Dogweiller and Brookoff - by email. I did see Dr. Dogweiller in Memphis in June. Dr. Brookoff just simply does not buy the systemic yeast thing, and he explained why to me. He has practiced cancer medicine (oncology) and said he had seen patients with yeast in their blood, and they don't last long. I think what Dr. Dogweiller is treating me for needs to be clarified. I think she is treating me for an overgrowth of yeast in my intestines which is real. It happens when all the good bacteria is killed off - usually by antibiotics - and the yeast flourishes and grows. And it can make you really sick.

I don't know how your symptoms act or react, but it seems if I can keep my bowel pretty regular and free of this yeast thing, I do much better. My bladder and my bowel are very close and sometimes not too friendly neighbors. I have IBS, and if I get really constipated, I have that fierce searing feeling in my bladder - it's hard to explain - it's not like regular pain, and it's not really frequency and urgency, but it's bad, and it will not allow you to sleep. If I am having diahrrea, it seems I experience more cramping and more frequency and urgency. So, if I can somehow strike a balance with my bowel, I do much better.

So, unless your doctor has specifically told you to forego all those foods, I'm not sure it's really helping you any - a lot of that food you are foregoing has nutrients your body needs, and I know it's hard for us to take supplements.

Another thing that I have discovered about myself is that I seem to have some sort of malabsorption problem with my stomach. This leads most of us to believe that we have "sensitiviites or allergies" to certain medications, when, in fact, the problem is that our stomachs can't absorb them properly. I don't know what the answer is to this - if I get an answer, you can be sure I will post it.

I hope this helps and doesn't just confuse you. I don't think a little sugar now and then is a problem, but we probably all need to forego it on a regular basis. Don't make yourself miserable on this earth by denying yourself so much because, frankly, I don't think it does any good as far as the IC is concerned. Others might disagree, and if it helps, great, but if it doesn't, don't make yourself more miserable than you already are. Be sensible about your diet and introduce things back in slowly and be aware of your reaction. I think you will find that some of the things you thought bothered you turns out to be a coincidence, and you will probably be able to tolerate it after all.
That's been my experience, and I've been dealing with IC since 1994.

Let me know how you do if you do try some of the foods you've been avoiding. I'm real interested to know. You can email me at my personal email address at fayecombs@comcast.net.

All my best to you,

Faye Combs

Originally Posted by Momelf

Faye,

Thanks for sharing your story. I've known that candida is a problem for me and have been through rounds of "cleansings." I don't seem able to kick the sugar habit completely, so I think it keeps coming back. Do you know if there is a test of some kind to show if you have it? Or how bad you have it? Right now I'm on a gluten-free diet (gluten-sensitive) and in the past month have given up meat/most dairy (causes inflammation). And today I'm hurting again. Well, at least the pain motivates me to seek other alternatives.

Thanks,
Darlene

[marsi4]

I have always had a problem with yeast since I was a teenager. That was the first time I noticed it, perhaps I may have had it even before that. I was never treated for it because I didn't know what it was until I got older and even then I would not go to see a doctor for it. I started taking Diflucan for it only three years ago, and use creams as well from time to time but I can't get it under control. I was on Diflucan for 2 months a while back and it helped while I was taking it. When I stopped the yeast was back in no time, two weeks or so. I can't keep taking it though cause I know it isn't good for the kidneys , and I have never tried Nystatin, but I will. I believe that an overgrowth of yeast can cause health problems, but I don't think it can cause IC. IC is so hard to understand and it is driving me insane. Yesterday, I was in so much pain I was thinking of going to the hospital by ambulance and today I feel so much better. I just don't get how a day can make such a difference. I didn't end up going to the hospital because all they would do is give me pain meds and I stayed home and did the same , and combined 3 more pills to the mix and knocked myself out so I can sleep for a few hours. I hope someone can figure this disease out soon and give us some relief.

Marsi4