IC, Interstitial Cystitis

Posted by on May 15, 2010 in hormone allergy | Comments Off

Sent: Sat 5/15/2010 4:30 PM

location: United Kingdom

Your Question: Dear Dr Roby,

I would like to take the opportunity to briefly outline my condition of severe Interstitial Cystitis, when it started, the treatments I have had, and where I am today.
I am 40 years old and first got my symptoms of Interstitial Cystitis when I was 12 years old – yes, 28 years of trying to find solutions and answers to my endless years of agonising suffering. This including symptoms of extreme burning pain in the bladder and the urethra, chronic inflammation and a constant frequency and urgency to urinate. It is at the point now where there are only a few days, in any one given month, that I can feel slight relief of these symptoms. I believe my bladder, urethra and surrounding tissues have become extremely hypersensitive due to the continual constant attacking from my immune system causing severe damage and deterioration over the years. I have tried every medication and therapy that the urologists have put forward, i.e. installations in the bladder (e.g. DMSO), dilations of the bladder, oral medications (e.g. pentosan polyphosphate), treatment at pain clinics, and some treatments being barbaric (in my opinion) leaving me in a worse cond
ition than previously. From all of this nothing has worked, with the exception of slight relief from anti-inflammatory medication (steroidal & non-steroidal). I am now only left with one option to consider, the removal of my bladder and urethra through extensive surgery which terrifies me.
I have found it very difficult to write this letter because over many years I have tried endlessly in this country to explain to the many professionals I have seen over the years (Urologists, Gynaecologists) that I believe my symptoms, if not caused by hormones, are definitively, without a doubt, exaggerating my symptoms of burning pain and continual trips to the bathroom to the point of being bedridden for days and even weeks on end. To be only dismissed and told that hormones are not implicated, so far, as research suggests in Interstitial Cystitis patients. It has only been on finding your website (Roby Institute) that I am able to continue on with my battle to avoid the despair, hopelessness and fear I have had of not ever finding a treatment to help me. At this moment in time I cannot work and find it very difficult to carry out daily chores. I cannot sleep because I am up all night in the bathroom due to the burning pain in the bladder and frequency. I have a very poor
quality of life and long for the occasional relief of symptoms. For your reference I also suffer with allergy asthma (from age 3) and suffer lots of allergies to most food groups, animals, dust, etc. And take certerizine to alleviate some of the symptoms (but does not help with my Interstitial Cystitis).
Back to my severe Interstitial Cystitis, for many years I have had pain through most of the monthly cycle with slight relief when progesterone and estrogen are at their lowest levels. When both estrogen and progesterone increase I am at my worst, being much more symptomatic with pain and frequency.
Based on the above information could you please tell me:-
1. If it would be possible to try both the Pro-Calm and Est-Calm subluingal drops
2. the laboratory tests required to test for evidence of antibodies to progesterone and estrogen
3. Any other laboratory test that measures the other hormone imbalance/allergy.

As I live in the in the United Kingdom I am not aware of any practice that is familiar with your findings. Now that I have found you I can only hope and pray that you can help me at your earliest c onvenience as you have helped others with similar symptoms of Interstitial Cystitis.
I anxiously await your reply.

Yours thankfully,

Dear Ms. S.:

Order the ProCALM drops. I will see the order and add EstCALM in the same vials. Order my book from www.amazon.com or download it if you have a Kindle. In it you will see the dietary changes I suggest IC patients experiment with. Of particular benefit is LSD movement (Long, Slow Distance). I know these tests are available to you as I have several UK patients who managed to get their health care provider to order them.

We want to measure your estradiol, testosterone (total and free), DHEA, random cortisol (about 9 in the AM). Mid-period would be nice but anytime will do as you are most likely going to be a the lowest limits of normal in both estrogen and free testosterone. Your doctor will insist your hormones are “within the range of normal”, but let us note the range of normal for estradiol is anywhere from zero to 400. Yours will be under twenty. It closer to 400 when you were eighteen. Eight year old girls are about 20 and guys are “normal” with estrogens up to 56. Mine runs 80 so we are going to be very impressed with how low yours will be. It will need to be raised. But now we have the next problem…you need it yet we know from your history that you are also allergic to it.

So we add it to help balance you and we “block” the allergic reaction with the homeopathic drops of estrogen (and progesterone). Does that make sense for you? It is explained in a great deal more detail in my book. Even though you are going to buy one bottle of drops combining ProCALM with EstCALM, I am going to send you three so we can titrate the drops more accurately. Call when you get them and I will direct you in how to use them. You reach me at 512-619-0354 from 5PM to 9PM, your time, Monday through Friday. The drops are not approved by the FDA.

Not one of my IC patients has ever gone on to that barbaric surgery. By the way, your symptoms began at age twelve…and so did your hormone changes.

Warm regards,

Dr. Roby