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This is what the rheumatologist thinks I have. He sent my blood out for bloodwork. What I read doesn't sound too good. The treatments are problematic. He said that my case is atypical since I don't have any symptoms except in the knees and one little patch of psoriasis (maybe) on y scalp that I have never noticed because it doesn't bother me. You can barely see it. But he was highly suspicious given my sister's colitis, my IC and my knee description.
The bloodwork will take a week and apparently, even if I have this HLA 27 marker, ultimately the dianosis is up to the rheumatologist.
The theme for the last few months has been trying to resolve west versus east. This was a hard diagnosis to get. Here is what Dr.. B said: " This is simply a diagnosis of an autoimmune origin. I would not treat it differently than from a Chinese medicine approach." By which, I think she means it is already part of what she is treating.
This was a disorienting experience, especially since this originally started as a tracking injury. Would love your input....
B,
B,
What is the western treatment for this?
I think you get a bit stuck and more confused because you have a history of knee pain and alignment issues. But which came first? IC or knee stuff? My IC-like symptoms (not bladder) started in my early 20s. My first strange knee injury as well was back then. As my relatively silent imbalance progressed, and particularly in the last 5 years, my joint pain worsened before IC appeared.
The thing is, most western people have alignment issues in their feet, knees, hips, pelvis, ribs, shoulders, cervical spine, etc....through their whole body. They may or may not have joint pain. Some have severe joint issues. But many do not. I am not sure that yours "started" with a tracking issue, or if the IC made your joints more uncomfortable in your 20s. It is possible that because you have some misaligned joints, that it is easier for the lymph to get stuck there (this was the point I was trying to make in that other post with my chronic back pain that resolved) and you have more toxins trying to move out of your body at a decent rate than the average person. (Many people are in a mildly toxic state but are not moving a lot of toxins out of the body at a quick rate. (This is why, for example, some people seem to feel so good eating coconut products, etc.. according to Dr. B, because they are very toxic and don't even realize it!)
I think there is a spectrum of joint pain in IC treatment. The symptoms from our informal survey of current and past patients is that it seems to last anywhere from several months to several years. It seems that slowly these symptoms resolve.
The western doctors will treat based on the symptoms they observe. They would treat each person that presented with your symptoms in essentially the same way, with medicines that you know your body would not tolerate very well. The chinese medicine diagnosis is looking at your whole person and treating that.
In similar "gut healing protocols" to ours, such as GAPS or SCD, or in alternative treatments for infertility, for example, or psoriasis, or asthma, the length of "alternative" treatment is about 2 years. As hard as it is, I think you have to give this protocol another year before you re-evaluate and decide to go to something western. But maybe there is a way to safely augment your current treatment with Dr. B?? But it doesn't appear that western drugs are compatible with treatment.
I am rambling a bit. But I am trying to say that I think the inflammation in your gut made your joints more vulnerable (than the average person without gut inflammation) from a young age. I think time and protocol will heal. This is presuming that Dr. B's dissertation (and the bodies of work behind it) holds true.
If we don't excel at health, the only other option is disease.
Mimi you are so well versed,
Mimi you are so well versed, I always appreciate your informative posts!!! You explained this very well...
Bonnie, I agree...one of my customers has this but he insists that it is not treatable...I beg to differ...let us know how it goes and I'm sure that whatever diagnosis you get, Dr.B can work with it...I would give it more time with her as well :)
Bonnie- the book "anatomy of
Bonnie- the book "anatomy of an illness" is about a man's recovery from that disease. It is an inspiring book for me.
Thank you!
Thank you!
Just want to echo Deir's book
Just want to echo Deir's book recommendation. Reposting an old post of mine from 2009:
"Sometime books leap out at you as if they are trying to get yr attention! This happened to me years ago before I got IC with "Anatomy of an Illness as Perceived by the Patient" by Norman Cousins. It fell off the shelf in a library in Mayfair, London in the late 1980s then I noticed it in a display in a bookshop in the Midlands in the 1990s and lastly I saw it in another bookshop nr Regent's Park, London in 2000 when I finally bought it! I warmly recommend this book as it is one of my 3 favourites books I've ever read."
Bonnie, for me knowing what
Bonnie, for me knowing what is wrong helps my anxiety. That is the reason I had the battery of tests done recently for the swelling issue I have been dealing with. If getting a diagnosis helps your understanding of what's going on then I think it's great. This doctor will treat the symptoms though, not the root cause. Matia will treat the root cause. You just have to decide what is going to help you the most right now. A relief from pain might make a big adjustment in your attitude and give you strength to keep on chugging along with Dr. B but I do think it will be Dr. B who can heal you the best in the end.