SusanC
04-08-2004, 01:47 PM
This is for Jess and Stacy from the last clorpactin thread...and for anyone else interested in the effects of clorpactin. Dianne referred to someone that this treatment has helped...she was referring to me.
Like many here, I was very leery about clorpactin since it was an old treatment and fell out of favor. It wasn't until later that I learned that the solution was used incorrectly, and that's where it got such a bad rap. Read on the "meet the experts" chat with Jill and Alfred Globus about why this happened and the correct way to do the treatment according to the original studies
First of all, I believe that the name itself is scary when we compare it to a commonly used substance like bleach used in our laundry. I believe that the correct spelling does not include an "H" as in Chlorox. There is no bleach in this chemical. In fact, it is used on open wounds in the hospital during surgery to clean them, I believe. It does not damage tissue.
What clorpactin does is penetrate the tissue and give it more oxygen. It doesn't strip the lining or burn or anything like that when the correct concentration is used.
The series of treatments I had brought my pain level down a notch or two so that pain meds actually worked for me. Yes, I still have pain, but this is the only thing that has really helped in combonation with oral meds and the interstim for frequency and burning.
It was so helpful to me to read what Alfred Globus said and to give the info to my uro. We also were able to get some old studies that showed how much a series of clorpactin washes up to 10 days apart helped other IC patients in the past. It took a lot of digging but we have real evidence that it helps. It just fell out of favor...and fear took over (understandibly, considering the pain it caused when done one time during a hydrodistention using the wrong concentration)
It pains me so to think that doctors are not informed about this. And, because of this, we patients are frightened about what was and is a promising treatment.
Sorry this is long....I get so fired up about this subject....how patients were led astray because of doctors who wanted a one-time fix instead of doing the treatments properly over a series of weeks in their offices.
It might help to read the experts chat about clorpactin.
What questions do you have? I'll be glad to answer them.
Has anyone but Dianne and myself tried the treatments...what was the outcome? :confused:
Hope everyone has a good holiday.
Like many here, I was very leery about clorpactin since it was an old treatment and fell out of favor. It wasn't until later that I learned that the solution was used incorrectly, and that's where it got such a bad rap. Read on the "meet the experts" chat with Jill and Alfred Globus about why this happened and the correct way to do the treatment according to the original studies
First of all, I believe that the name itself is scary when we compare it to a commonly used substance like bleach used in our laundry. I believe that the correct spelling does not include an "H" as in Chlorox. There is no bleach in this chemical. In fact, it is used on open wounds in the hospital during surgery to clean them, I believe. It does not damage tissue.
What clorpactin does is penetrate the tissue and give it more oxygen. It doesn't strip the lining or burn or anything like that when the correct concentration is used.
The series of treatments I had brought my pain level down a notch or two so that pain meds actually worked for me. Yes, I still have pain, but this is the only thing that has really helped in combonation with oral meds and the interstim for frequency and burning.
It was so helpful to me to read what Alfred Globus said and to give the info to my uro. We also were able to get some old studies that showed how much a series of clorpactin washes up to 10 days apart helped other IC patients in the past. It took a lot of digging but we have real evidence that it helps. It just fell out of favor...and fear took over (understandibly, considering the pain it caused when done one time during a hydrodistention using the wrong concentration)
It pains me so to think that doctors are not informed about this. And, because of this, we patients are frightened about what was and is a promising treatment.
Sorry this is long....I get so fired up about this subject....how patients were led astray because of doctors who wanted a one-time fix instead of doing the treatments properly over a series of weeks in their offices.
It might help to read the experts chat about clorpactin.
What questions do you have? I'll be glad to answer them.
Has anyone but Dianne and myself tried the treatments...what was the outcome? :confused:
Hope everyone has a good holiday.