Should I give up

[peaceplease]

I am about 75 percent done with my first bottle of Cystoprotek, I have been on it for about 3 weeks I think. I can't say it has helped one bit, infact, I have been feeling really bad in the bladder department. I wonder how long I need to give it before throwing in the towel and moving onto something else. Any thoughts on this? I was thinking I would be seeing at least some improvement by now. I am sticking to the IC diet too, as I have been since last September.

Also, if Cystoprotek doesn't work, do you think that is a good indication that Elmiron wouldn't work for me either?

[sandi303]

I can't really remember for sure, but doesn't the info that Alganot sends with the Cystoprotek say that it could take up to 3 mo's to see any results? Sometimes we get so frustrated from trying products with no results that we don't wait long enuf to see results before we chunk it and move on to the next. I know it's hard to keep taking something when you don't see any results or feel even a little bit better, but I would say give it the full 3 mo's or whatever it is they say in their leaflet thing.

[ICB]

CystoProtek is recommend for 3 months for best results. I have spoken with patients that did not start seeing symptom improvement until the second or third month. Moreover, many patients need a multi-modal (more than one) treatment regimen. If you are not addressing the three major components of IC, you may not get as well as you can be with just CystoProtek alone.

Discuss your treatment options with your healthcare providers; together you can decide what is the best plan of action for the immediate future.

Best wishes, ICB :flower:

[elsie3205]

ICB, are you a spokesperson for Algonot?

[peaceplease]

I have a question for ICB, what are the 3 major components of IC you are referring to?
I am doing diet and I assume that is one of them.
Just curious. I will try to give the Cystoprotek some more of a chance I guess.

[ICB]

ICB, are you a spokesperson for Algonot?

No. The company headquarters is in Sarasota, FL. I run an IC support group in Tampa, Florida. Several years ago, I asked their VP of Customer Support and Education to please send me information packages for the support group meetings. She came to the support group meeting and brought me the requested information. We spoke after the meeting and I asked if we could have Dr. Theoharides speak at one of my support group meetings when he came to Sarasota. The meeting was arranged for the following year and I decided to try the product myself. I've now been on the product for the past 4 years and it's really helped to control my symptoms.

I was a National Patient Advocate for 5+ years and am currently an IC Education Advocate and Support Group Leader. I provide information to IC patients and healthcare providers; however, I am not a medical professional. I'm just a patient that has done a lot of reading, and have had the priviledge to learn from some of the best IC minds (clinicians, researchers) in the country.

Both Algonot, LLC and Desert Harvest Aloe Vera refer patients to me for support and education. Both companies can answer many of your questions pertaining to their products, however they usually recommend the ICN and the ICA for comprehensive IC information. If the patient wants to speak to a support group leader - they usually give them my contact information.

Best regards, ICB

[ICB]

I have a question for ICB, what are the 3 major components of IC you are referring to?
I am doing diet and I assume that is one of them.
Just curious. I will try to give the Cystoprotek some more of a chance I guess.

The three major components of IC is a simplistic view that refers to the overall causes of our symptoms; they include:

1. A breakdown of the protective lining of the bladder. The lining (glycosaminoglycans, or GAG layer) is composed of a coating of mucus, which protects the bladder wall from bacteria and irritating substances in urine.

2. Mast cells - many IC patients have high levels of histamine release in the walls of their bladders. Histamine can stimulate the inflammatory process.

Mast cells - originate from immature cells in the bone marrow. Once released into the circulation, they develop into one of three types of mature cells; connective tissue mast cells, mucosal mast cells in the gastrointestinal tract and bladder, and brain mast cells. Mast cells communicate information from the immune system to tissues surrounding the mast cell. When environmental allergens attach to immune cells, these cells produce and release an antibody (IgE) that binds to mast cells. Once activated by IgE, mast cells can selectively release a variety of chemicals to act on nearby cells. These chemicals also can attract other cells of the immune defense system. Actions of some of these chemicals also could explain some of the clinical features of IC, such as pain and inflammation. Mast cells also can be activated directly by the nervous system. . . Moreover, the effects of stress on mast cells also are not restricted to the bladder; similar results have been found in brain, intestine, and skin. (By: Tony Buffington)

3. When the bladder becomes inflamed, sensory awareness increases, and less distension is needed before it is registered as painful. This may be a defensive response first; the body is trying to eliminate any bacteria or objects that may be the cause of the inflammation. This is most likely how the initial pain of IC starts; an inflammatory process may set the stage. We believe that you can start with your bladder as the source of your pain. Pain is transmitted through your central nervous system on a chronic basis, and in the process, some of these nerves may undergo a change called “upregulation.” When these nerves become up-regulated, they can send out pain information all on their own. They don’t need the bladder anymore.

There is also Pelvic Floor Dysfunction, Trigger Points and Tender Points that affect 70% of IC patients. I consider this a sub-component of IC. If left untreated, your IC symptoms could be totally under control; however, you may feel pain, frequency, burning, urgency, etc, due to PFD. You may want to check out the following website for more information www.roadtoslainte.blogspot.com. If you would like a PFD Fact Sheet, send your request to icrelief@verizon.net.

If the above IC symptoms/causes are treated early, the chances of significant symptom control are above 80%. The key is to look at the big picture, the multimodal approach, looking at all the things that are going wrong and then correcting them.

Diet, Self-Help Techniques, Physical Therapy, Prescription Medications, and Dietary Supplements may be part of your treatment regimen. The majority of IC patients respond best to a multimodal (more than one) treatment regimen.

Consult with your healthcare provider to find the appropriate treatment options/regimen for you.

Best wishes, ICB :flower:

[traceann]

I just wanted to add in that I take the Algonot (and yep it says in my literature to give it the full 3-4 month chance before making any decisions on it) and Vistaril - to help with the mast cells even further. I saw it was recommended, to use the Atarax/Vistaril in combo with the Algonot basically for the same reasons to take it with Elmiron. Worked out well for me as I was already taking the Vistaril, started that back in 2004. So, I too am just finishing my first bottle and my next ones are on their way!! ;)

[ICB]

Tracey:

The recommended dose for CystoProtek is 2 capsules, three times per day for a total of 6 capsules per day; for the first 4 months. After that, they recommend 2 capsules, twice a day for a total of 4 capsules a day.

From your list of medications that you are taking, it seems that you are taking more than the recommended dose. Are you taking 8 capsules a day now? If so, have you checked with the company for their recommendations and most importantly with your healthcare providers?

I don't know if taking a large amount of CystoProtek can cause problems; check with the company and your doctors to make sure. I may have completely misunderstood your post; but I wanted to make sure you're treatement regimen is safe for you.

Best wishes, ICB :flower:

[Angeles]

I got my first bottle of Cystoprotek today and I'll start tomorrow. It says to freeze the capsules to avoid stomach problems ( which I normally have as a result of any medication) . I'll take it in combination with Elmiron, my idea is that in case I can't take Elmiron anymore, I'll have plan B. I've been on Elmiron for 3 months but is giving me some stomach problems...

To freeze teh capsules, I put some of them in a ziploc bag. I don't know if anyone freezes the caps as welll and if this method is OK.
I didn't want to put the bottle on the freezer b/c they may stick together(?) I also noticed the capsules are huge. I hope I can tolerate Cystoprotek. I have a feeling that this will help.

[ICB]

I got my first bottle of Cystoprotek today and I'll start tomorrow. It says to freeze the capsules to avoid stomach problems ( which I normally have as a result of any medication) . I'll take it in combination with Elmiron, my idea is that in case I can't take Elmiron anymore, I'll have plan B. I've been on Elmiron for 3 months but is giving me some stomach problems...

To freeze teh capsules, I put some of them in a ziploc bag. I don't know if anyone freezes the caps as welll and if this method is OK.
I didn't want to put the bottle on the freezer b/c they may stick together(?) I also noticed the capsules are huge. I hope I can tolerate Cystoprotek. I have a feeling that this will help.

I freeze the entire bottle (they don't stick together). The company recommends it to prevent patients from repeating (burping up) the taste of the pill.

Have you tried taking the Elmiron out of the capsule and putting it in 4 ounces of water? Elmiron capsules are known to cause stomach upset in some IC patients; so if you take the medication out of the capsule, it may take care of the problem. Consult with your healthcare provider first.

Best wishes, ICB :flower:

[elsie3205]

I didn't freeze the first one I took last Thurs. It caused me to have SEVERE stomach pain and my stomach is still trying to recover almost a week later. What in the world is "olive seed oil"? That is what algonot claims is the reason for the stomach upset. I thought it was just plain ole olive oil and I use that in cooking all the time. I'm not sure if I will try one frozen or send them back.

[traceann]

LOL, nope I am only taking 2 3x's a day, must have been half asleep when I redid my sig line, :) I think I meant 4 caps total for the day (2 caps 2x's a day) that's where my "4" came in, as well as the "6", lmao!!!!Thanks for the head's up, will get that changed!!

And I freeze mine right in the bottle as well ;)

[ICB]

I didn't freeze the first one I took last Thurs. It caused me to have SEVERE stomach pain and my stomach is still trying to recover almost a week later. What in the world is "olive seed oil"? That is what algonot claims is the reason for the stomach upset. I thought it was just plain ole olive oil and I use that in cooking all the time. I'm not sure if I will try one frozen or send them back.

I'm very sorry that you had such a bad experience. The olive oil is a very concentrated olive oil that comes from the pit of the olive. The reason that they use this particular olive oil is because it actually helps the body to absorb chondroitin and quercetin; thus increasing the absorption rate into the bladder.

I too would be shy about trying something that caused me such distress. It bothers my stomach, if I don't freeze the capsules. If I take the capsules frozen, I have no problems. However, everyone is different.

I've spoken to several patients that have sent the product back to the company; the majority have not had a problem receiving a refund. However, make sure that you send in your request within 4 months of purchasing the product.

Best wishes, ICB :flower:

[pamptracy]

I keep mine in the freezer but when we are on vacation I may not always be able to take them frozen. I'm up to 1 capsule twice a day and this weekend I'm going up to 3 capsules a day. I called Algonot since I've been having headaches. Will they make me sick if they aren't frozen? I've been on them for about 3 weeks too. At first they seemed to be helping but now I think I'm the same. All I'm doing is Cystoprotek and the diet as well. Too afarid to take any more meds!

Tracy

[Angeles]

What I think happens is that the capsule melts in your stomach and that causes irritation but when is frozen it passes the stomach without melting. If you have a sensitive stomach and it melst in the stomach, that may cause stomach pain.
Maybe if you try one day without freezing it it'll be okay but try to find a freezer to put your bottle wherever go on vacation.
BTW I just started taking it and can't say much about the product.

[HollyS]

The three major components of IC is a simplistic view that refers to the overall causes of our symptoms; they include:

1. A breakdown of the protective lining of the bladder. The lining (glycosaminoglycans, or GAG layer) is composed of a coating of mucus, which protects the bladder wall from bacteria and irritating substances in urine.

2. Mast cells - many IC patients have high levels of histamine release in the walls of their bladders. Histamine can stimulate the inflammatory process.

Mast cells - originate from immature cells in the bone marrow. Once released into the circulation, they develop into one of three types of mature cells; connective tissue mast cells, mucosal mast cells in the gastrointestinal tract and bladder, and brain mast cells. Mast cells communicate information from the immune system to tissues surrounding the mast cell. When environmental allergens attach to immune cells, these cells produce and release an antibody (IgE) that binds to mast cells. Once activated by IgE, mast cells can selectively release a variety of chemicals to act on nearby cells. These chemicals also can attract other cells of the immune defense system. Actions of some of these chemicals also could explain some of the clinical features of IC, such as pain and inflammation. Mast cells also can be activated directly by the nervous system. . . Moreover, the effects of stress on mast cells also are not restricted to the bladder; similar results have been found in brain, intestine, and skin. (By: Tony Buffington)

3. When the bladder becomes inflamed, sensory awareness increases, and less distension is needed before it is registered as painful. This may be a defensive response first; the body is trying to eliminate any bacteria or objects that may be the cause of the inflammation. This is most likely how the initial pain of IC starts; an inflammatory process may set the stage. We believe that you can start with your bladder as the source of your pain. Pain is transmitted through your central nervous system on a chronic basis, and in the process, some of these nerves may undergo a change called “upregulation.” When these nerves become up-regulated, they can send out pain information all on their own. They don’t need the bladder anymore.

There is also Pelvic Floor Dysfunction, Trigger Points and Tender Points that affect 70% of IC patients. I consider this a sub-component of IC. If left untreated, your IC symptoms could be totally under control; however, you may feel pain, frequency, burning, urgency, etc, due to PFD. You may want to check out the following website for more information www.roadtoslainte.blogspot.com. If you would like a PFD Fact Sheet, send your request to icrelief@verizon.net.

If the above IC symptoms/causes are treated early, the chances of significant symptom control are above 80%. The key is to look at the big picture, the multimodal approach, looking at all the things that are going wrong and then correcting them.

Diet, Self-Help Techniques, Physical Therapy, Prescription Medications, and Dietary Supplements may be part of your treatment regimen. The majority of IC patients respond best to a multimodal (more than one) treatment regimen.

Best wishes, ICB :flower:


So, one component would be to take something for the GAG layer such as elmiron or cystoprotek or both, the second component is an antihistamine for mast cells. Is that correct? What would we take for component number 3 bladder inflammation?

[HollyS]

The three major components of IC is a simplistic view that refers to the overall causes of our symptoms; they include:

1. A breakdown of the protective lining of the bladder. The lining (glycosaminoglycans, or GAG layer) is composed of a coating of mucus, which protects the bladder wall from bacteria and irritating substances in urine.

2. Mast cells - many IC patients have high levels of histamine release in the walls of their bladders. Histamine can stimulate the inflammatory process.

Mast cells - originate from immature cells in the bone marrow. Once released into the circulation, they develop into one of three types of mature cells; connective tissue mast cells, mucosal mast cells in the gastrointestinal tract and bladder, and brain mast cells. Mast cells communicate information from the immune system to tissues surrounding the mast cell. When environmental allergens attach to immune cells, these cells produce and release an antibody (IgE) that binds to mast cells. Once activated by IgE, mast cells can selectively release a variety of chemicals to act on nearby cells. These chemicals also can attract other cells of the immune defense system. Actions of some of these chemicals also could explain some of the clinical features of IC, such as pain and inflammation. Mast cells also can be activated directly by the nervous system. . . Moreover, the effects of stress on mast cells also are not restricted to the bladder; similar results have been found in brain, intestine, and skin. (By: Tony Buffington)

3. When the bladder becomes inflamed, sensory awareness increases, and less distension is needed before it is registered as painful. This may be a defensive response first; the body is trying to eliminate any bacteria or objects that may be the cause of the inflammation. This is most likely how the initial pain of IC starts; an inflammatory process may set the stage. We believe that you can start with your bladder as the source of your pain. Pain is transmitted through your central nervous system on a chronic basis, and in the process, some of these nerves may undergo a change called “upregulation.” When these nerves become up-regulated, they can send out pain information all on their own. They don’t need the bladder anymore.

There is also Pelvic Floor Dysfunction, Trigger Points and Tender Points that affect 70% of IC patients. I consider this a sub-component of IC. If left untreated, your IC symptoms could be totally under control; however, you may feel pain, frequency, burning, urgency, etc, due to PFD. You may want to check out the following website for more information www.roadtoslainte.blogspot.com. If you would like a PFD Fact Sheet, send your request to icrelief@verizon.net.

If the above IC symptoms/causes are treated early, the chances of significant symptom control are above 80%. The key is to look at the big picture, the multimodal approach, looking at all the things that are going wrong and then correcting them.

Diet, Self-Help Techniques, Physical Therapy, Prescription Medications, and Dietary Supplements may be part of your treatment regimen. The majority of IC patients respond best to a multimodal (more than one) treatment regimen.

Best wishes, ICB :flower:

Are the chances of getting 80% symptom control only if treated early? I have had IC for 15 years. Does that mean that I will not be able to achieve 80% symptom control?

[asilva]

I've been taking CystoProtek for 5 months now. I take two capsules twice a day and I don't freeze them. I've not had any stomach problems from them.

[Angeles]

To answer Holly S on her question about what to take for bladder inflamation, I don't think there's a medication for that...but the diet will help.
As well as avoiding things that aggravate your symptoms...
I don't know if medications such as Elavinl help with th einflamation, I don't take it so I wouldn't know.

[ICB]

So, one component would be to take something for the GAG layer such as elmiron or cystoprotek or both, the second component is an antihistamine for mast cells. Is that correct? What would we take for component number 3 bladder inflammation?

In my simplistic view, the third component of IC is nerve damage. Neuropathic pain refers to pain, burning, frequency, and urgency generated by nerve damage. Although it is not known for sure, pain in IC, especially later in the disease, is thought to be neuropathic. IC experts think that after some time of getting pain, burning, and other signals from the bladder, nerves change, and they start firing off pain messages on their own, even if the bladder is not irritated. That may explain why pain can persist in some patients after the bladder is removed.

Although I am not aware of any scientific data on the subject, the theory is that if you have a mast cell next to a sensory nerve, the sensory nerve releases the chemicals and activates the mast cells. Then the inflammation stimulates the sensory nerve again, and the whole process repeats itself; it becomes a repetitive circle.

The most widely prescribed drugs for this "third component" are Elavil or other tricyclic antidepressants, Effexor, Neurontin, Lyrica, Cymbalta, and Topamax. Nevertheless, your healthcare provider may prescribe something else based on your health history.

If you believe that any of the information in this email would be helpful for you, share it with your healthcare providers and ask it they believe it would be an appropriate treatment option for you. Never disregard your physician’s advice or delay in seeking it because of something you have read in this email.

You are correct in the treatment of the first two components. Share the information with your healthcare provider; he/she will evaluate your condition and make appropriate recommendations for you.

This email has been sent without being proof read to expedite delivery.

Best regards, ICB :flower:

[ICB]

Are the chances of getting 80% symptom control only if treated early? I have had IC for 15 years. Does that mean that I will not be able to achieve 80% symptom control?

No. However, in most cases, it is easier to achieve symptom control if your symptoms are treated early; it usually takes a lower dose and less treatment options to control IC symptoms.

Many patients find successful treatment regimens after having IC for many years. Nevertheless, because we've had the disease for so long, it may take longer to find the right treatment regimen to control our symptoms; it may also take higher doses of prescription medications and additional modalities.

The key to finding a successful treatment regimen is research, tenacity, and a team of great healthcare providers willing to work with you to find the appropriate options for you. Regardless of when treatment begins, numerous patients have achieved complete symptom control with medication and other modalities.

If you believe that any of the information in this email would be helpful for you, share it with your healthcare providers and ask it they believe it would be an appropriate treatment option for you. Never disregard your physician’s advice or delay in seeking it because of something you have read in this email.

This email has been sent without being proof read to expedite delivery.

Best wishes, ICB :flower: