The year is coming to a close and as I like to do each year end, I have been reflecting on the changes that have come in these last twelve months. I think the most exciting always every year are the new births-the miracles in life that I think keep us all going and are even more inspiring when they come through a person having struggled with health and conquered that obstacle. Perhaps even more special is that we are often honored to become a part of those baby's healthcare-we may then be able to influence the next generation in a positive way.
Each year, I enjoy reflecting on and comparing our current thinking with what it was when we started this work more than 20 years ago. I have been reflecting on some of the really great people impacting this filed whom are no longer with us, like Dr. Fuggazzato. Dr. fuggazzato made a huge mark on the face of Interstitial Cystitis. He influenced me tremendously at the beginning of my career along with many others that were included in my Doctoral Thesis- but he really made a big impact on my thinking at the time. He helped many people over his career because of his forward thinking. His work was the reason I conducted broth cultures with every patient that came in to see me at that time in my career.
That work ultimately led me to realize that, the urine of those having IC more often than not showed an overgrowth of Strep B or e.coli with an occasional presence of other organisms such as Klebsiella Pneumoniae. More and more I began to realize that the infectious organisms were occurring from within the body as opposed from an outside source.
Dr. Leslie Kaplan is another doctor who has made his mark in the lives of so many women with IC-I don't think he is discussed much on line, but he has helped so many women and more than anything I have appreciated that we have been able to refer one to the other over the last two decades. I have appreciated his respect for what I do and I very much respect him for what he does.
So much has changed in the last two decades not the least of which is how technology has been expanding at lightening speed and is effecting everything in the world including healthcare. There has also been a huge growth in the arena of chronic healthcare and the thinking involved with helping these conditions and as many doctors to meet that sadly epidemic demand.
In the UK one doctor's work is very interesting to me-- Professor James Malone-Lee in UK. His work- as I see it from a distance is similar to mine in that he is focusing in on the various bacterium that are lurking in the body and recognizing that the frustrating issues that surround these bacterium quite literally, are the biofilms that make them quite illusive. Some other heroes more specific to chronic healthcare and CFS-a condition that often is suffered by many having IC-Dr. Myhill and Dr. Forsyth also in UK. They are both doing their own work in this area and helping so many people profoundly.
The thing that I love about all of these different doctors specializing in these different areas of unwellness from their own area of medicine is that it allows a patient to find the methods that work for her, or him. For some the paradigm of a Western medicine is unthinkable, whereas for others an alternative paradigm is rubbish. Many people are somewhere in between and love to have these paradigms merged.
The holiday season often brings sentiment. Perhaps that is why in the last month several people have popped up from the past, reaching out to express happiness and gratefulness for what they have been given back in life because of the work that we did together. This has definitely made going into this holiday season even more meaningful. Few things bring us greater joy than to know we have helped make a change in someone's life.
Many current people under my care reminded me of why I began this work in the first place- they expressed appreciation for simply being... “believed”. When I first embarked upon this journey, I remember what it was for no one to believe that there was anything wrong with me. As I became better myself, I realized the importance of helping others and “believing” without judgement. I remember one family mocking me for the “allowing” their family member to express her pain in what they though were ludicrous words. But, for me, they were not at all ludicrous if those words were appropriate adjective for her discomfort. This is something that is very difficult to understand if one themselves have not suffered deeply.
Something that also made me feel so grateful myself was how many people acknowledged how important it has been for them to know that we have simply always “been there”-on the other side of an email when they needed a shoulder to cry on or an answer because they were in pain-acknowledging that this is something we have done all of these years even through our vacations without exception. This really touched my heart-deeply-as this is only one small bit of what we do outside our working hours motivated by our deep compassion.
Of course we have not and can not help every person that comes to us for help. No person is capable of such a thing. However as true as that may be, it pains my soul no matter the reason regardless of where that reason falls. I have contemplated this issue tremendously, as, it is my deep belief (and this is also what I was taught by my Ph.D. Professor, Jeffrey Yuen, a world renown healer and one of the most highly esteemed in our field of Chinese medicine) that no one person can help all people. The variables when it comes to the human being are endless. When we fall short of helping someone, it brings us equal sadness and sense of loss as it does the person we are endeavoring to help. Each of us learn from our failures just as much as our successes.
It is especially exciting to see that the foundation of what we feel is at the heart of the chronic condition of IC is currently getting attention from virtually every area of healthcare today- the microbiome. Of course each of us have our particular viewpoint into this important part of health and illness, but so many of us agree that this is indeed the fundamental aspect of what drives health and disease.
Further, there has been an incredible amount of growth genetics and the many types of flaws that may contribute to chronic health conditions. There have also been huge changes in the thinking on the use of antibiotics-the importance of which goes back to the idea that the health of the microbiome is greatly fundamental to health. Some other topics that are exciting--microbial transplants, nutritional alternatives, and alternative cancer treatments.
So, comparing what we know now to what we knew 20 years ago—well this is a much expanded version of the same things we were thinking back then. We have ways in which to support our understanding of things more fully. One example is the now well known MTHFR gene flaw-Dr. Lynch is one of the top experts in this area of medicine. As the years have passed, I began to realize that more and more of my patients were being tested for and having some positive variation of this gene flaw (s). I became so interested in this, I reached out to one of my professors to conduct a retrospective study on my patients to see how many of them had this flaw to understand better why, if, I did not do what the now common treatments are for it, why they got better. (23Andme is a resource for genetic testing).
To me, the answer is simply that we were using Chinese medicine. At one point in my fascination of all of this, I decided to test myself. As it turns out, I have the homozygous forms of the two genes contributing to this gene flaw placing my body at an incredible disadvantage for health. Yet, I too was able, as many know to regain my health solely through this kind of healthcare despite not knowing until many many years after the fact.
However, having the ability to test for these kinds of genetic flaws is something we could not do years ago and it offers us the ability to make choices that we may not have made before ultimately increasing our ability to be more effective-certainly altering our food choices and being able to fine tune our supplement choices.
Cancer is also be an offshoot of these gene flaws and as such it became quite important for me to focus more on that subject as well. Thank goodness it has come up very little very little over these 20 years. It does seem to pop up everywhere though for all of us I believe-like chronic illness, it feels so epidemic. Thetruthaboutcancer.com is becoming a huge and wonderful resource for alternative cancer treatment information, as is chrisbeatcancer.com. I have posted numerous times on Dr. Stanislov Burzynski as well-someone doing incredible work in this field. There are numerous things that are being done in this filed of research that correlates with both cancer and chronic illness. The use of marijuana is one example-one that I personally shut my mind to for all of these years. And, while I personally do not ingest this substance, I have definitely opened my mind to all that is going on in this area both internally and topically. We have reached out to Dr. Alan Frankel in Los Angeles and learned more about what he is doing there and with his ties to another well known Doctor in this field in Israel. As an extension of that I have also been intrigued by the use of marijuana in its raw form juicing the plant. The thing that I found of most interest is that the theories he was reviewing with me very much cross over to the theories behind chronic illness---I remain open on this topic.
I have found myself reading endlessly on this subject and improving my own knowledge of it from the point of view of Chinese and Western alternative thinking. We do not intend to treat cancer but, as it is important to understand the many things that may culminate from the route of origin, we felt this was very important to dedicate time to. We have passed on what we have learned to whomever has needed it, taking our personal time to deliver that information because one never knows what small piece of information may save a life. These are things we do with our time away from work because it is important to make a difference in what we do as human beings as much as what we do professionally.
Another related thing that we have considered paramount to healing is water. Anyone who has worked with us knows how we feel about this subject. Last year, we moved into a new home with a well. In the past with patients we have noticed that even with wells, those people did not do as well as when they switched to bottled water. However-- we are huge advocates for a Green lifestyle for our bodies and for our Earth. These bottles are wasteful and not something that we would like to continue to advocate. We are always looking for ways to stop this practice but have not found any means to do so. When we moved into our new home, we decided to seek assistance in examining the quality of our well and installing a system which would neutralize the issues we found with it and drive that healthy water to our entire home so our bathing water was as clean as our drinking water. Reverse Osmosis was not an option for us as we have continued to correlate the use of RO as one factor that may occur with a pre-onset of IC (there are so many-so we are not implicating RO water as a single cause). So we worked with a lab and installed a system that was individualized specific to our needs. It has been one year now and we are all continuing to do well with no noticeable changes in either direction to any of our states of health. This is exciting as we would like to take this information and experience and apply it to our patients at time where we feel safe in doing so.
One challenge of practicing Chinese medicine is correlating it with the Western model of physiology in a way that can be understood- so it doesn't sound- “Chinese”! This is where Boaz far surpasses me, as even I am in awe of him when I listen. We often say we need to record some of these conversations for viewing because they are truly helpful for people who want to know more and truly understand. I think often because the concepts are so foreign that it is easy to think that certain issues are not always being addressed within this system of treatment. I think what has been incredible to me over these years is witnessing the improvement that may occur (the MTHFR example above being one) because although the system of diagnosis was different the end result was the same. However-both the caregiver and the person receiving that care really need to be on the same page to be able to reach the place they are both hoping to reach together.
This said-again, no system is perfect. And, while many systems are effective in diagnosis and treatment, the human variable is astounding. So, lastly—I have been contemplating the why with regard to that. The human factor involves so many things. And, a person's environment-meaning the health of their homes, their work spaces, their relationships, etc....all matter! And, perhaps they matter more than once thought. This is where sometimes other forms of treatment may become quite necessary-and in the current state of alternative health, there are so many alternative types of care in this area.
As we have spent the better part of the last several years discussing the future of the ICAMA, and our vision moving forward, We have considered many scenarios. It has been challenging for many reasons in the last two years as the wonders of internet communication, while incredibly helpful may also sometimes create interference and misinformation. The challenge to keep up with all that goes on behind the scenes of patient care is quite daunting when the spin of internet communication is layered on top. Support becomes more and more necessary but is not always available to smaller organizations such as ours.
In consideration of how we may serve our patient community and humanity best, Boaz and I have decided to refocus the ICAMA in the direction of being a resource for information and networking for all of those who are doing valuable work with IC and it's related conditions, realizing that we are deeply passionate about our work but that it is also very important to try and be the string that helps to ties all of the people together that are fighting the same battle. It has been our life's work to not only treat but to educate and create awareness on the importance of the things we have learned and to assist in, not only the treatment of, but the prevention of IC and it's related conditions to the present population and the coming generations. We have been in existence for over 20 years and carry a wealth of information that we would like to share, but we will be reaching out and creating an effective network of doctors who will be willing to interact and communicate with one another in the spirit of truly making a huge impact on world health as it relates to IC and its related conditions.
We would like to include such things as inviting commentary from and featuring other doctors/practitioners that will join us in the ICAMA vision of being a united force of information in this important field of health.
We will also likely be asking for volunteers whom may be able to donate their time on a regular basis to assist us in maintaining this site so that we may uphold its function within the community in the highest standard of conduct. (If you are interested, please contact us privately).
We remain very passionate with the paradigm within which we work, but acknowledging that what each of the unique heroes of medicine and health today are doing and creating a forum through which to share a platform for those bodies of work seems critical in today's current state of affairs. We welcome all respectful commentary to this blog.
Happy New Year-much health!