I have a Sed rate of 30 and I've never had that out of 11 years of having CFS. It's always been a 2 or very low. Also I've always had a positive ANA and that is 320 and pattern this time and last time is Nucleolar?
It is the same thing that happened to me, postie. People with CFS, tend to have very low (but normal) sed rates. Our sed rates are usually 0-3. However.... when we have secondary adrenal insufficiency or an overlapping autoimmune condition... that can change.
My ANA ranges from 1:320 - 1:640 (speckled pattern). My ANA wasn't positive for many years after having CFS symptoms. The reason why I believe that it finally became positive, is because of Prof. Garth Nicolson's research (and other physicians research as well):
"When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response. Our recently published studies demonstrated a possible link between mycoplasmal infections and CFS and FMS, since we found high frequencies of mycoplasmal infections in these patients."
So his theory makes sense in my case. By the time my ANA was positive, I was beginning to have pleurisy like symptoms..... so my rheumatologists had to rule out lupus. I didn't have lupus, but I did have autoimmune systems. Sheesh...allergies are considered to be "autoimmune". Most physicians do not consider fibromyalgia to be an autoimmune disorder. However, some physicians do and are questioning what "autoimmune" really means. Think about it..... if someone really had an "autoimmune" disease, they would be dead. Our immune system is so powerful (just think how we feel when we have a cold), that if our disease was truly attacking our bodies, we would be dead. Well since research has proven that viral channels remain open in fibro/CFS patients long after the viruses have effectively been eliminated and that means that your body still thinks it is fighting infections long after they have been beaten, consuming energy resources and destroying otherwise healthy cells.... that may be considered autoimmune and especially since CFS affects every organ system.
Since I've been on a pathogen killing treatment, I haven't had a sed rate and ANA test done. But my pleurisy symptoms are now gone... and I wouldn't be surprised if my ANA was very low or even negative now. If you check out Dr. Mark Shaw's article on what causes CFS and/or fibro, you will read about viral, but also bacterial infections. I have both and am currently being treated (and making success) on treatment for my bacterial infection. The longer you've been ill...... the more infections you will tend to have.
IMO... you should consider having an A.M. cortisol level done, to make sure that your climbing sed rate isn't because of secondary adrenal failure. If your test is negative, then consider the possibility of having an overlapping autoimmune disease. Remember if you are one of the two-thirds of CFS patients who have L-form (mycoplasma) bacteria.... bacteria will continue to multiply and you will have additional symptoms, etc. But the good news is... bacterial infections can be treated. The downside is... treatment can and often increase your symptoms and can take years (depending on your condition). The longer you've had this condition... the harder it is to treat these infections, but they are treatable.
Ever since I became ill with CFS 11 years ago, my ANA was ALWAYS positive. Not once, have I ever had a negative ANA. When I first got sick, my ANA was always 160. The pattern was always speckled and homogenous. Then as years went by, the ANA went up to 320. The pattern still stayed the same. Then last year the ANA went to 640 and then when I had it done again it went back to 320.
But last year the pattern switched to Nucleolar and it's still NUcleolar when I had it done last week. My neutrophils are still low and not up to normal.
Once my ANA pattern was mitotic spindles. I think as our disease progresses, our titers and even our patterns will frequently change. I also feel that this is why it is so important to treat the infections that we test positive for. Such treatments have helped and even apparently cured people with syndromes (including CFS) and autoimmune diseases.
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