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  1. Hey folks, So here is today's update from the immunologist: He researched more and decided it can't be proven that we are dealing with chronic Lyme, or, for that matter any specific disease because I don't test positive for any of the specific tests. BUT, we know, for sure, that my C4a levels are ridiculously high and that is caused by either autoimmune inflammatory disease or chronic Lyme. He wants me to see a rheumatologist as a second opinion, but, believes that the best course of action will be taking a class of drugs called anti-tumor necrosing factor drugs. They suppress a couple parts of the immune system, including the complement system (of which C4a is a part). These drugs are expensive ($1200-$1800 per shot or infusion) and since they can't find a specific diagnosis, he and the rheumy will have to make a case for the insurance company to pay for it, hence his request for the second opinion. These drugs are used in treatment of several autoimmune diseases like rheumatoid arthritis, lupus, psoriatic arthritis, etc. These are not the safest drugs in the world but he said he feels the benefits outway the risks in my case and thinks it is probably my best chance of ever feeling better because it specifically targets the one root cause we can prove is going wrong. The working theory is that reducing the C4a will significantly impact most/all of my symptoms in a positive way. After reading about C4a at length, I agree that this is probably the thing that needs to be targeted (if, and since, we can't find a more specific diagnosis.) So, I can't get an appointment with the rheumy until March 26. I am continuing with the allergy shots and follow ups every two weeks with the immunologist until then. This is the most promising lead anyone has found so far, so I will keep you all updated. Katie
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