Letters from Support Group Leaders & Members
Thanks
5-2004
I've been diagnosed with IC for eight years now and most of that time has been debilitating pain. Most people with IC talk about flare ups. I pray for remissions. I've seen more than a dozen drs. since diagnosis. Each of them treating me the very best they could and my only option was to stay so doped up I could hardly function and did not care about the pain that was still there. I laid down most of the time and when I walked, I walked on the side of my foot in a very soft type of tip-toe. I went to the rest room as often as every 12-15 minutes and slept very very little. Travel became nearly impossible. I would travel by car but there were many embarrassing times.
I've been taking CystoProtek for three months now and life has become almost normal. I do still take methadone as a regular pain preventative and fentanyl when I hurt. But the pain in nearly never there and I have cut my pain meds in half. Hope that soon the pain Dr. That I've been seeing for three years will eliminate the pain meds just to see what happens.
Did I tell you that in the course of trying to get relief, I had the interstem surgery? Well, I did and one of the leads stopped working so I had to have it again. During this time I found Algonot and started using it. The Drs. told me that if I were not hurting to turn the interstem off to save the batteries. After being on cystoProtek for about a month, I decided to turn the interstem off and see what happened. I have not turned it back on.
I live an almost normal life now and I believe that the CystoProtek is the reason. Thank you so much for all your research.
Believe me, I am spreading the news to everyone I know or hear of with IC.
Thanks again,
Promising Results
Sent to Dr. Theoharides 4-2004
Dr. Theoharides,
I would like you to know that I have had promising results with your product. I have been diagnosed with IC since 2002. Since that time, I have taken medications such as Elmiron, Atarax, Urised, Pyridium, and various pain medications - along with bladder instillations of Rimso. I have seen little results with any of these drugs.
At the advice of my Urologist, I began taking your CystoProtek last fall. I took it for 4 months and was feeling better. After the 4 months, I was not sure if I really "needed" the supplement, so I quit taking it. Wow, did I notice a difference. My symptoms became much worse for a month. I couldn't pinpoint the cause of the increase in symptoms - until I remembered I quit taking CystoProtek. So, I ordered another supply right away. Since I began taking it again, I have noticed a drastic change in my symptoms. The pain is still there, but much less debilitating.
I am pleased with the results of CystoProtek. I definitely would recommend it to any IC patient.
Thanks, Indianapolis, IN
Comments About CystoProtek
Sent to Dr. Theoharides 11-2003
As leader of an IC Support Group, I was contacted by Denise Hyman to see if she could send samples of your product to me for distribution to our members. Last week was a terrible one for me since I was having a very severe IC flare up. I received two bladders instillations, one of Elmiron and the other of Heparin, but seem to get no relief from either. I received the package from Denise last Friday afternoon. I found the bottle of CystoProtek and read the directions on the bottle before looking at the other literature. I started out taking three capsules twice a day and I am ecstatic to say that by Sunday afternoon most of my pain was gone and I have had no pain since Sunday. I talked with Denise today and she said only a few patients realize any relief that fast, but I do feel 100% better. I started out taking the Elmiron but it gave me Ulcerative Colitis and the bladder instillations are the only thing that have helped me. I have a lot of headaches too, and Denise said the medicine may help that too.
I am going to write a letter to the members of our support group tonight and send the literature and samples to them.
Thank you,
IC Support Group Leader
Comments on Dr. Theoharides' Lectures to Support Groups
I have been a support group leader for 9 years in South Florida.
Dr. Theoharides spoke at my May meeting. He was great and the patients thought his presentation was excellent. Many people in my group are currently on his product, Cystoprotek and some are doing very well. Dr. Theoharides is a well known IC researcher and was one of the first doctors to do IC research. Dr. Theoharides was the researcher who developed the mast cell theory and is responsible for Atarax being a standard IC treatment.
I would highly recommend that you let him participate in your conference. He would definitely be an asset.
South Florida Leader
A Letter to a Florida Support Group Leader
Dear Marcia,
Thanks for all your efforts re: helping women with IC. My problem developed rather suddenly last spring (although I've always had "to go" frequently), and I was terribly uncomfortable. I saw two urologists and both were kind, but neither of them was particularly knowledgable about IC. One doctor prescribed a medication, Usept, which helped a lot, but which also made me drowsy - not a good thing for a college professor.
Because of your mailing, I heard about the presentation in May '03. I'm a bit of a skeptic, but I was impressed with the research presented. I purchased the Algonot Plus supplement and after about four weeks, I began to feel better. Now, into my fourth month, I feel that my IC is fairly well-controlled with the Algonot PLus and PreLief tablets. Thank you for all your help. Without your wok, I probably would have spent at least a year or two searching for effective medications.
Sincerely,
a member of your support group
Regarding Algonot Plus
Theo,
I’ve had my Mom on ALGONOT for about 45 days. You may recall she’s been diagnosed with PMY, but you had a thought that she may have FIBROMYALGIA. She also has a form of Acute Leukemia- Stage Zero. She has started to feel “MUCH, MUCH” better with regard to the pain she was feeling. It was not in her joints, but was everywhere else. What’s also of interest is that she no longer get leg cramps while sleeping at night. This has plagued her for many years. While she’s also taking Vioxx (sp?) she has the feeling that it’s the ALGONOT that’s helping.
Sincerely
January 2002
REGARDING GENERAL
Dear Ms. Hyman,
I want to thank you and Dr. Theoharides for taking your valuable time to help me. I will forward the medical suggestions to my doctors and I’m sure they will prove to be helpful. It goes beyond words the hope that I feel knowing that people like you are out there researching and actually reaching out to patients afflicted with such devastating illnesses as IC, IBS, and fibro.
Sincerely
August 2003
ALGONOT PLUS AND CYSTOPROTEK
Diagnosis: IC diagnosed approx. 2 years ago.Comments: spent the year 2001 in the urologist’s office 3 to 4 times a month being instilled with silver nitrate, took several medications, ditropan, hortriptllyn (sp), and some other anthistamines and all giving me side effects that were to difficult to work through. Then in January, 2002 I started taking Algonot plus and aloe vera, and guess what!!! In the year 2002 I have been to the urologist twice, quite a difference from the previous year. I am also sleeping 3 to 4 hours at a time during the night. Previously I was sleeping 1 to maybe 2 hrs at a time. Yes, I am careful with my diet and I do take PreLief, but I am crediting Algonot with the tremendous improvement over this past year. My bladder doesn’t hurt anymore. The fall of 2001 my bladder just plain hurt: sitting, standing, whatever. I was in the ladies room every 20 minutes. I thought my life cannot go on like this, so I researched the ICA website, looked at the 16 pages of options. I had nothing to loose and a lot to gain. Thank you, I will be a faithful customer of Algonot.
Sincerely
January 2003
Cystoprotek
Dear Sirs,
I am writing this letter to express my sincere gratitude for your product. I have IC and have tried almost everything on the market and nothing has worked for me until I started using Algonot. It has truly increased my quality of life. I currently have an implant that is not working and has cost me a tremendous amount of money with no results. After taking your product I plan to have one last surgery to have it removed and will feel free again at last. I live a very active lifestyle as my husband and I team rope. The implant has caused many problems including buying a special saddle that would not interfere with the implant. We practice about two or three times a week and usually compete about twice a month on the weekends. It was very embarrassing to have to make a run to the bathroom not to mention trying to get out of the arena through a sea of horses to the trailer.
My doctor told me that the expected time to see results from Algonot was about three months. I could tell a drastic difference in two months. I do not miss any doses and take it strictly according to directions. I now only get up once or twice during the night. Before I started using Algonot, I was up approximately four to five times, and this was while using a sleeping aid and with the implant. I cannot relay to the fullest extent my satisfaction with your product as words cannot express the way I feel about getting my life back, not to mention my husband’s appreciation. I would just like to tell your employees to keep up the good work and continue your research and the amount of progress you are making is tremendous. I am sure there are some people that simply do not take the time to write to tell you their success stories, but believe there have to be many success stories untold. Again, I want to express my sincere gratitude for your company and your product and will be a continuing customer.
Sincerely
October 2003
REGUARDING MASTOCYTOSIS
Dear Dr. Theoharldes,
I follow your research regarding mast cells closely, as I have mastocytosis. I was diagnosed based on my clinical picture along with an elevated serum tryptase level. After reading articles based on your research about mast cells and flavonolds, I began taking glucosamine and quercetin. I have experimented several times by omitting quercetin and I have very pronounced flushing, increased fatigue, cognitive impairment and to put it simply, “feel terrible.” I take Atarax 10 mg HS—this is the only prescription med I take. I am active, feel well, and have a normal life, as long as I take quercetin on a daily basis. I am considering chondrotin but feel if things are stable, I will wait to try it only if my condition deterlorates. Just thought you might like to hear a real life story about how your research has helped someone with a mast cell disorder.
Thank you for the work that you do. It certainly has helped me tremendously.
Sincerely
2002
