Dear Stunned, I am so sorry for all the difficulties you are going thru! It is just not fair!! I have been trying to study the Western blot. I do not claim to be an expert, or to know +more than the Drs, but will share some of what I've learned about
band 41. Others may correct me if I am wrong.
My understanding is that band 41 indicates an infection that would be similar to Lyme, for example, syphillis. So, although it is not specific to Lyme, it is not specific for many other infections.
I will paste some info below that I have found regarding this band, because I believe your WB was significant enough to pursue a diagnosis for Lyme -- ie; for the Dr to figure out how to RULE OUT Lyme:
"41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody."
"According to Allen Steere and the CT Ag Station, perform only a Western Blot (NEVER and ELISA), and if you have band 41 and no periodontal disease, syphilis, or obvious arthritis, you have Lyme Disease.
Allen Steere in 1986, when he developed the first CDC Method to diagnose Lyme, recommended: ” Perform serial Western Blots to look for changing and expanding IgM and IgG antibodies,” since Lyme is a borrelisis, a relapsing fever, and the changing antibodies is a reflection of the varying antigens- and that, THIS CHANGING phenomenon means “the spirochete remains alive throughout the illness.”
"In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia.
Minor cross-reactivity was noted when sera from persons who had syphilis, periodontitis or other oral infections, or rheumatoid arthritis were tested with OspC, OspE, OspF, and p41-G. With relatively high degrees of specificity, ELISAs with recombinant antigens, particularly OspC and p41-G, can help to confirm B. burgdorferi infections."
So I would think it possible that you have something that has caused fibromyalgia, and it certainly seems definite that you have some sort of infection causing it. It sure seems that your WB indicates Lyme, but I'm glad you have more tests coming!
As Razzle says, 'There my 2 cents', only mine's worth about
a dime! (just kidding, Razz, I'm still learning from you.....)
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck, chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain. Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia. What was this??
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG. Still awaiting appt w/ LLMD.