What is “Autoimmune Soup”?
A human body protects itself with a special network of cells (such as “white cells”) and organs (such as lymph nodes). If our immune system breaks down we cannot survive.
Sometimes the immune system can make a mistake and attack parts of the human body…similar to “friendly fire” in a battle that causes injury of soldiers fighting on the same side.
There are now many ways to test the immune system. More and more people are being told that they have "friendly fire" problems. Sometimes, a person has many test results or symptoms that suggest friendly fire problems. For example: one test might suggest “friendly fire” at the bowel while another test suggests “friendly fire” at the thyroid and other symptoms suggest “friendly fire” at the skin and joints.This mix of "friendly fire" illnesses is called autoimmune soup. A person with autoimmune soup will often see several doctors. Each doctor may recommend different tests and treatments. Sometimes the confusion created by the differing advice and the many tests and treatment trials is worse than the problems caused by the immune system's mistakes.
What do we know about “Autoimmune Soup” from HowsYourHealth.org?
In the past, the HowsYourHealth websites have not asked about "autoimmune soup". We are posting this request to determine the interest in a website for "autoimmune soup". We know that "autoimmune soup" can be very frustrating for both the patient and the doctor. We would like to offer a way to support care and research for auotimmune soup - a rare but bothersome condition that is more a combination of friendly fire disease than one single known disease.
After the three-month period we will review comments about "autoimmune soup" and decide if the topic should be a permanent blog. If it becomes a permanent blog we will seek connections to helpful researchers on the subject. Together the users of the blog and the researchers should be able to identify better ways to understand and manage "autoimmune soup."
In the past, the HowsYourHealth websites have not asked about "autoimmune soup". We are posting this request to determine the interest in a website for "autoimmune soup". We know that "autoimmune soup" can be very frustrating for both the patient and the doctor. We would like to offer a way to support care and research for auotimmune soup - a rare but bothersome condition that is more a combination of friendly fire disease than one single known disease.
After the three-month period we will review comments about "autoimmune soup" and decide if the topic should be a permanent blog. If it becomes a permanent blog we will seek connections to helpful researchers on the subject. Together the users of the blog and the researchers should be able to identify better ways to understand and manage "autoimmune soup."
Comment Here If You have "Autoimmune Soup"... What is a Really Powerful Way to Increase Confidence?
- List the "ingredients" of your “soup”: what are the tests or symptoms that suggest friendly fire problems? a measure for rheumatoid arthritis, a measure for lupus, a measure for inflammatory bowel disease, a measure for thyroid disease, a measure for Sjogren’s disease, a measure for myasthenia, list other measures or symptoms.
- BRAG about a treatment approach or method that really worked for you to control or manage your "autoimmune soup" (These can be medical treatments or behaviors such as sleeping more or exercise, just as long as they helped).
- List any public web-tools, websites or applications that have been helpful and that you would recommend. Why do you recommend them?
- Make suggestions to make this website better and “smarter” to help people become more confident in understanding and managing their "Autoimmune Soup."
As the first entry in this blog, I would like to introduce myself, explain my role with the blog and tell you about my hopes and dreams for this project.
ReplyDeleteI am a 42-year-old mother, spouse, researcher, coach and runner and I have “autoimmune soup”. After several years of testing and many trips to medical centers on the east coast, I have the following diagnoses and symptoms as “ingredients” in my autoimmune soup:
Sjogren’s syndrome with neuropathy
Myasthenia Gravis
Meniere’s disease
Raynaud’s disease
Pancreatic insufficiency
B12 deficiency
Elevated copper and low zinc levels
Ageusia (lack of taste) with persistent dysgeusia (bad taste).
I have been on several different treatment regimens over the past 5 years, including:
IVIG (Intravenous Immunoglobulin infusions):
I received IVIG 3 times and had improvement in some of my symptoms for about 3 – 4 months with each treatment. Unfortunately I developed aseptic meningitis as a side effect with each treatment. My last treatment resulted in such severe meningitis I will not be able to receive IVIG again.
Rituxamib infusions:
In June of this year (2012), I received rituximab infusions after 14 months of battling with the insurance to cover the therapy. I tolerated the treatment well and had a partial, but good response with improvement in my fatigue, joint pains, dysgeusia, dryness and B12 deficiency. My symptoms increased again after 3 months and I was retreated with another round of rituxamib in October (2012). I have had a similar improvement in symptoms.
My involvement is this blog is personal and professional. I am a medical doctor by training but have pursued a career in medical research, thus making this blog an area of research interest. Also, having a collection of symptoms that defies classification into any one known disease, I am an outlier in medicine and join this blog as a participant with autoimmune soup. In the hopes of finding someone “like me”, I have talked with patient peers in waiting rooms and seen prominent physicians with more than 30 years of experience, but it has been to no avail. I live with the uncertainty of the course of my illness and the knowledge that my treatments are “best guesses” as to what will cause improvement.
I am aware that some illnesses and conditions can be so rare that a single physician or even a group of physicians in a clinic may never see a case in their career(s). It is these outlier illnesses that may benefit from the power of a global internet. Patients with “as yet to be defined” illnesses or conditions that do not fit “perfectly” with diagnostic criteria can share their symptoms, test results and/or treatments on this blog. As more people enter their information I hope to identify clusters of individuals that have similar medical findings and create “outlier groups”. People in these outlier groups could then compare treatment successes and failures and the course of their illness.
As well as sharing medical information, camaraderie among group members and reflection on a shared experience are anticipated positive outcomes of this project. Thus, I eagerly await the medical learning and advancement of knowledge around “outlier” illnesses from this blog. I also personally hope to meet someone else that has a similar “autoimmune soup”.