Author: Ken Swanson (134.244.103.---)
Date: 08-25-04 09:24
Thanks for your help, Meg.
I have been studying your site for the past few weeks and sharing the information with my Doctor. He raises many good questions that I am unable to respond to. After reading further through the posts, it appears that many individuals here share the same experience with their physicians. Following is a brief summary of my condition, my current status, and some questions about this treatment raised by my pulmonologist.
After a routine physical and chest x-ray in July of 2003, I was diagnosed with Sarcoidosis by an open lung biopsy on Sept. 25, 2003. I was 39 years old.
We did not know if my condition was stable, improving or deteriorating. My doctor suggested that we monitor it closely for a while (without any treatment) to find out.
One year later in July 2004, both my x-ray and PFT showed a slight decline. At that time, he very reluctantly prescribed prednisone. Also at that time, I renewed my efforts to learn more about this condition. That search led me to the documents on sarcinfo, which I downloaded for my pulmonologist. He read everything and began searching the web for other information regarding this treatment.
Since Chronic Sarcoidosis is a potentially fatal condition, I would not trust my health to someone I did not feel was at the top of their field, and willing to dig and search for only the best treatment options. Fortunately, living in the Chicago area with access to excellent hospitals and many doctors, I was able to find that individual. In addition to his normal practice, he also reviews documents for Chest and other medical journals. Unfortunately, based on that experience, he was not impressed by the arguments or evidence presented in the “Remission In Sarcoidosis” paper. That is not because he had never heard of it before. He is familiar with the use of antibiotics in a variety conditions.
His concern, which I share, is that there is no reference to this treatment anywhere other than sarcinfo.com. I personaly have searched PubMed and been unable to find any published documents regarding this treatment.
While I find the information on sarcinfo compelling, I fail to understand how you have been unable to publish one study in a medical journal, or document your findings in such a way as to interest a specialist in the field. For sarcinfo to claim it is because specialists are ego driven or unwilling to learn, does us all a disservice, and ignores the fact that there may be gaps in the argument, or a failure to communicate it effectively.
I am unable to find any real statistical evidence on sarcinfo other than statements such as “many patients”, “the majority of us” or “most”.
Exactly how many people are using this therapy?
What was their exact diagnosis?
How were they diagnosed?
Are they acute or chronic?
What stage where they in, and what was their overall physical condition when they began the MP?
What treatments were they on prior to the MP?
What is their current status, and what side effects have they experienced?
What about the 5% who did not respond to the MP?
Where they 39 year males with biopsy proven pulmonary sarcoidosis and four weeks of prednisone in their system?
I know you are tracking this information via internet, but it is not available to me on sarcinfo, and I can only imagine that if it was good scientific data, every pulmonologist in the country would be interested in it, regardless of what treatments they had prescribed in the past.
While I believe that every one of the moderators on sarcinfo have a genuine desire to help others with this condition, the pure anonymity and nature of an internet Bulletin Board make everything suspect. The reality is, a post or reply could be from a fourteen year old with spare time, albeit a very cruel 14 year old.
But nonetheless, I do appreciate your efforts and your existence. I understand that you believe in this therapy to the point that you use yourself as the first line of testing. I have a two year old son and cannot in good conscience tell him that I am going to “further” risk my life by going against what appears to be the vast majority of the medical community, all if whom are much more knowledgeable in this area than I am.
Dr. Marshall said himself, in response to an individual struggling with a caner diagnosis, “ps: I am not an expert in these issues. Make sure you ask your oncologist to explain the above issues to you in detail - he/she is being paid to do that job, and it is your responsibility to make sure they do their job properly..”
I agree completely. I have only been studying medicine for three weeks. That is why I have the best Pulmonologist I can find.
I continue to read your site everyday. You are the only individuals out there who actually claim to be able to cure this condition. I do not need to wait for a 10 year double blind study from Mayo Clinic on the effectiveness of your therapy. I do however, need to wait until you can provide some statistical data, and present your arguments and evidence in such a way that my doctor is compelled to listen. Can you help in any way regarding these concerns?
Thank you again for any help you can provide, and for continuing your efforts to understand and treat this disease.
Sincerely,
Ken Swanson
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