Patient Stories

Blood transfusion dependent and no disease diagnosis.

Posted In: Immune conditions Anonymous | May 21, 2014 | 03:02 PM

Here is one for the books. 3 years ago my skin started itching and burning when I got stressed. For a year doctors said I had stressed induced hives. After that my stresses increased and I started developing swelling in all my joints and pain throughout my body. The pain was random and fluid in it changed daily. I finally got insurance and found out I was severely anemic. From there my platelets started dropping to life threatening levels.

After every conceivable bone marrow test, genetic test, and blood test nothing was found. No auto immune, no bone marrow dis function, nothing. I had to be hospitalized 5 times for blood transfusions, ivig transfusions, and just wait and see monitoring until my platelets improved. I have had over 25 transfusions this last year and still no disease diagnosis.

Well I had to take matters into my own hands. I felt this was a hormonal issue due to how I felt. But not hormones as we are taught. But hormones of the immune system. Yes our immune system has it's win set of protein/hormones called cytokines. These hormones regulate our immune system and when they are out of balance, they cause disease including auto immune. Fortunately for me my imbalance is not auto immune but just dys regulated immune condition. Mega doses of steroids stopped working too.

Psyconeuroimmunology is a frontier of medicine that is the future of immune discovery and how we can identify the root causes of inflammatory diseases instead of just focusing on the disease states after the damage is done. For me no damage has been done yet so I should fully recover. It's because I pushed them to check out my immune system! My inflammatory interleukin 2 levels were more than double normal for no reason. The answer? A fungus cyclosporin (modified) to lower this inflammatory cytokine!

The question now is why did my immune system do this. We may never know. Not a single virus, bacteria, parasite cell was found in my body to cause this. A medical mystery.

I am now diligent about taking probiotics daily for the rest of my life though. Our guts are the starting place for immune problems if we don't have genetic pre dispositions to imbalances. In our modern society of antibiotics, probiotics are life savers. Yogurt, kefir, miso soup, pickles, kimchi are great sources of probiotics in food.

Blessings to all of you and your search for healing. Please suspect immune dys regulation and inflammation as a root cause of so many symptoms when the doctors say there is nothing wrong we can find and it's all in your head. Take that as a good sign that you can recover before the disease state as a result of immune hormonal imbalances. Even after a disease state, once the imbalance is corrected the disease can go away. Again my "condition" was life threatening and was prepared to die in the hospital every time due to platelets below 5000. That is how severe immune hormonal imbalances can get. I recommend the book: The Balance Within. Google it on amazon. It is a life saver.

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