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I was just told by a primaryPrimary amyloidosis Primary biliary cirrhosis Primary hyperparathyroidism Primary insomnia Primary lymphoma of the brain care physician that if one has Lyme Disease, their Sed Rate and CRP would be elevated. He believes I do not have Lyme because my Sed Rate and CRP are not elevated, in fact very low. He didn't know what to make of my CD57 being so low and asked if I had an HIV test which of course I did and it was negative. So, how many of you diagnosed with Lyme had elevated sed rate and CRP? Is this another false perception by a physician about Lyme Disease?
My SED rate was high and my LLMD told me that is *unusual* for Lyme. I also had elevated CRP, but just slightly out of normalNormal saline flush range. My CD57 was normalNormal saline flush, so I guess we're opposites!
To my (medically untrained!) knowledge, both the SED rate and CRP are non-specific markers for inflammation. Neither one can be used alone diagnostically for Lyme or any condition (again, to my limited knowledge). So I don't see how your levels being normalNormal saline flush rules out Lyme? I'll be interested in what others say.
I can relate to struggling with your PCP. Mine was very much at odds with me when it came to Lyme.
I forget, but I think that you are awaiting your Western blot results? If so, try to sit tight and review those results with a doctor who has more experience with Lyme. Don't let this doctor get to you, it doesn't sound like he has answers for you.
Thank you for your response. We are really opposites! No, I am not awaiting the Western Blot, I believe that is ginak. I had a Western Blot, but not the Igenex Western Blot yet. The Western Blot I had was totally negative. I was tested for co-infections also which were negative. I had the ElisaElisa Elisa/western blot tests for hiv Lyme disease antibody about three times over this past year and it was negative. So why is my CD57 test 38 and why am I so sick? My alternative MD tried to guess by my symptoms and my CD57 that it was chronic lyme and put me on a trial of doxy. I had a bad reactionAllergic reactions Allergic reactions to medication Dermatitis, reaction to tinea Drug allergies Febrile/cold agglutinins Insect bite reaction - close-up Intradermal allergy test reactions Positive reaction to allergen Transfusion reaction to the doxy, so I stopped. I was getting IVs before all this at the Fibro and Fatigue Center in Philly. I had severe herx to the first two IVs. They advised me that this reaction is due to my body fighting a chronic infection. They also suspected Lyme. The only abnormal tests so far are the CD57, my EBV was 5,120 (unheard of) and my vitamin D at one point was 5. Who knows, maybe I don't have Lyme. You think one of the tests would have been positive by now.
I will be interested to hear what others say to, but I put more faith in what a LLMD has to say vs. a PCP.
Wonko was correct. Those test are non-specific markers of inflammation. So is the ANA. The sed rate can indicate vasculitis if elevated so this can be positive in lyme as the disease causes vasculitis. My sed rate and CRP are also very low. I would say it is false perception by a physician in my opinion.
My sed rate used to be very low, but when I had it checked in January, it was increased. My CRP is within normal limits. The idiot rheumy that I saw in January told me that it was nothing to be concerned about...........WHATEVER!
Yes, I thought he didn't know what he was talking about. I run into this time after time again. Am I ever to trust doctors? Then they run tests which come back abnormal and tell you it's nothing to worry about. Sorry, I am just so frustrated.
oops, sorry I got mixed up about your test results.
I started treatment based on a clinical diagnosis. To me, my Igenex Western blot (which had a couple of bands, but was CDC positive) didn't mean as much as my response to treatment.
My PCP gave me a laundry list of reasons why what I have isn't Lyme, from the pattern of my stiffness, to my response to steroids, to my lack of tick bit/rash, and so on. She refused to order a Western blot or to do a trial of antibiotics. But at the same time, she had no idea what was wrong and actually told me to give up on getting a diagnosis/treatment. Had I listened to her, I can't imagine where I would be, or where I would be heading!
With any treatment, you and your doctor need to weigh the dangers against the benefits. For me, the risk of taking antibiotics for this amount of time (just under 3 months and counting) is small compared to regaining my life.
I don't recall a lower limit on sed rate (whcih doesn't make sense to me), but anyway, my first blood test was 1 mm/h. On one of the health pages it mentioned that low sed rate is common in CFS patients. I mentioned this to the ID and he had never heard of this correlation. I got remeasured and it was 4. So maybe the test itself is also not so consistent. My LLMD didn't comment on my sed rate being low as an indication (for or are against) Lyme.
Interesting. Well here is the source on low (but normal) sed rates in CFS patients. Dr. Cheney explains somewhere (over the internet) why this happens, but I can't remember what that reason was
.Sed Rate (ESR) --- The most consistent laboratory abnormality in patients with CFS is an extremely low erythrocyte sedimentation rate (ESR), which approaches zero. Typically, patients with CFS have an ESR of 0-3 mm/h. An normal ESR or one that is in the upper reference range suggests another diagnosis.
My SED rate was high and my LLMD told me that is *unusual* for Lyme. I also had elevated CRP, but just slightly out of normal range. My CD57 was normal, so I guess we're opposites!
To my (medically untrained!) knowledge, both the SED rate and CRP are non-specific markers for inflammation. Neither one can be used alone diagnostically for Lyme or any condition (again, to my limited knowledge). So I don't see how your levels being normal rules out Lyme? I'll be interested in what others say.
I can relate to struggling with your PCP. Mine was very much at odds with me when it came to Lyme.
I forget, but I think that you are awaiting your Western blot results? If so, try to sit tight and review those results with a doctor who has more experience with Lyme. Don't let this doctor get to you, it doesn't sound like he has answers for you.
I will be interested to hear what others say to, but I put more faith in what a LLMD has to say vs. a PCP.
Thanks again for listening.
My sed rate used to be very low, but when I had it checked in January, it was increased. My CRP is within normal limits. The idiot rheumy that I saw in January told me that it was nothing to be concerned about...........WHATEVER!
I started treatment based on a clinical diagnosis. To me, my Igenex Western blot (which had a couple of bands, but was CDC positive) didn't mean as much as my response to treatment.
My PCP gave me a laundry list of reasons why what I have isn't Lyme, from the pattern of my stiffness, to my response to steroids, to my lack of tick bit/rash, and so on. She refused to order a Western blot or to do a trial of antibiotics. But at the same time, she had no idea what was wrong and actually told me to give up on getting a diagnosis/treatment. Had I listened to her, I can't imagine where I would be, or where I would be heading!
With any treatment, you and your doctor need to weigh the dangers against the benefits. For me, the risk of taking antibiotics for this amount of time (just under 3 months and counting) is small compared to regaining my life.
.Sed Rate (ESR) --- The most consistent laboratory abnormality in patients with CFS is an extremely low erythrocyte sedimentation rate (ESR), which approaches zero. Typically, patients with CFS have an ESR of 0-3 mm/h. An normal ESR or one that is in the upper reference range suggests another diagnosis.
source: http://emedicine.medscape.com/article/235980-diagnosis