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Hi strangers,
It's been so long since I have posted. I have been very sick for many months. No meds are working for me and my rheumy said that my next step would be Cytoxan. He does not want to prescribe that to me because I have not had children yet. (Waiting to get better first). So, my hands are tied.

I want to see what everyone thinks about this. I was watching a show on cable and it was like a mystery diagnosis show where you guess what the illness is at the end. I thought for sure that the girl had Lupus or RA - she actually had Lyme Disease "causing" Lupus. She was infectious from the Lyme and co-infections and it was causing the reaction and activating the antigens. I was amazed. I went to my rheumy appt that week and told him of what I learned. He said that it is definitely possible. The problem is that Lyme is very similar to Lupus and other autoimmune diseases - they are hard to catch on paper and have VERY close symtpoms. It is hard to differentiate between the two or if the Lyme is the primary condition. I have researched Lyme now and am amazed at the additional symptoms that I have. Plus the fact that I have never responded to the meds. The plaquenil helped only so far and the methotrexate helped the same. Other than that, it has been 3 years of torture for me. Steroids have been my best friend but I have Cushing's now and am still weaning after 5 months!

I made an appt with a Lyme's specialist in Michigan but the waiting list is 4 months to 2 years! It is worth checking out with our diagnoses. I do not want false hope, but I want to rule all else out too. Unfortunately, the only lab that can reliably test for lyme is in California called IGenex and my ins co won't let me send my blood there. The Elisa and western blot in area labs are not sensitive enough. The CDC had outdated info. I am having sympathy for Lyme patients and what they go through, just like us Lupus patients. We are struggling to get help and it makes us feel like junkies!!! I just want my life back! I know that I will be wheelchair bound in the next few years if things don't start improving. I am going downhill even though my expectations have been so high. I have officially given up hope for myself and don't feel like putting myself through something like Cytoxan. It would be great if I actually had Lyme, it's not a guarantee that the SLE and RA would go away, but they improve to have a high functioning life!
Hope everyone is doing well. I think the world of all of you and think of you all the time!
Love,
Leslie





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