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CD57 Numbers....
I see a few people posting about their CD57 numbers. It seems like almost everyone with lyme as low numbers. However, when I went for my first follow-up with my LLMD (Dr. S in San Francisco) the results from my bloodwork BEFORE i started Abx was 100!
This may seem crazy, but this number has me worried that maybe I don't really have Lyme. I tested positive for Igenex IGG with Banks 31 ++, Band 41 ++ and Band 58 +.
I also showed a titer of 180 on the IGM for echrlichiosis.
When I first saw Dr. S. he said I do have lyme based on above tests. However, he didn't know what my CD57 was at the time. I really didn't put much thought into the CD57 when I saw him last time and got the bloodwork results. He sent me for more Igenex testing and another CD57 blookwork test (with some other tests).
As you know, I've been sort of anxious...actually not sort of...but a LOT anxious that maybe I really don't have Lyme and this whole CD57 rate thing has me even more nervous that this isn't Lyme. My symptoms in my left leg have really been flaring up (lots of pulsating/vibrating type feelings). I know my anxiety is not helping, but I just cannot help but worry over this.
Also, I'm worrying because I've seen so many stories of people that spend a long time on ABX and then as soon as they go off of them, their symptoms return as if they'd done nothing.
And yesterday, I swear, I couldn't remember the name of a close friend of mine. It took me a few minutes to recall her name. Of course, now I'm worried about that too!!!
Oey Vey..... I would appreciate your any thoughts on my concerns.
Have a good weekend everyone. My husband went to Vegas...I choose to stay home so that I could rest but I am now just finding myself worrying about all this.
This may seem crazy, but this number has me worried that maybe I don't really have Lyme. I tested positive for Igenex IGG with Banks 31 ++, Band 41 ++ and Band 58 +.
I also showed a titer of 180 on the IGM for echrlichiosis.
When I first saw Dr. S. he said I do have lyme based on above tests. However, he didn't know what my CD57 was at the time. I really didn't put much thought into the CD57 when I saw him last time and got the bloodwork results. He sent me for more Igenex testing and another CD57 blookwork test (with some other tests).
As you know, I've been sort of anxious...actually not sort of...but a LOT anxious that maybe I really don't have Lyme and this whole CD57 rate thing has me even more nervous that this isn't Lyme. My symptoms in my left leg have really been flaring up (lots of pulsating/vibrating type feelings). I know my anxiety is not helping, but I just cannot help but worry over this.
Also, I'm worrying because I've seen so many stories of people that spend a long time on ABX and then as soon as they go off of them, their symptoms return as if they'd done nothing.
And yesterday, I swear, I couldn't remember the name of a close friend of mine. It took me a few minutes to recall her name. Of course, now I'm worried about that too!!!
Oey Vey..... I would appreciate your any thoughts on my concerns.
Have a good weekend everyone. My husband went to Vegas...I choose to stay home so that I could rest but I am now just finding myself worrying about all this.
My CD57 was 38 after a year of being misdiagnosed. From what I was told, Lyme and Bartonella cause a low CD57, but not everyone with these infections have a low CD57. It can be used to track how well a person is progressing with treatment. The CD57 is not diagnostic in itself.
As a funny follow up to what I posted above about my CD57 being >100 before I started treatment (and therefore at my most sick...): I was recently re-tested. At more than 2.5 years into treatment my CD57 now comes in low, at 42.
OK, maybe it's not that funny. Interesting, though.
OK, maybe it's not that funny. Interesting, though.
I just looked at my test records, and over a period of 18 months, my CD57 was tested at least 7 times, and it was always in the 60-150 range, and I too was VERY ill. The tests are an indicator, not an answer.
Band 41 is not specific to Lyme -- it could be something else, from what I read -- but I'm not medically trained.
Maybe time to get a second opinion. Take all your test results with you so the new doc can see your history.
Frustrating, eh? Hang in there.
Band 41 is not specific to Lyme -- it could be something else, from what I read -- but I'm not medically trained.
Maybe time to get a second opinion. Take all your test results with you so the new doc can see your history.
Frustrating, eh? Hang in there.
my CD57 was 147 when i was extremely sick which made me wonder if i have lyme myself, since my bloodwork all came back negative--except for a positive p41 band. my mom also has a positive p41, but does not have lyme (according to alternative health care providers, who tell me i do have lyme).
I agree with Carrie and would definitely get the additional testing done. Your doc sounds on the ball from these few data points.
Hi Melissa:
My tingling/pulsating feelings have pretty much always been in my left leg and foot. I get occasionally tingling feeling in my right foot, but when my symptoms flair, it's usually my left leg that bothers me. when I tremble, I notice it in my right hand. Everyone is different. Lyme could definitely cause the tingling that you describe.
Carrie
My tingling/pulsating feelings have pretty much always been in my left leg and foot. I get occasionally tingling feeling in my right foot, but when my symptoms flair, it's usually my left leg that bothers me. when I tremble, I notice it in my right hand. Everyone is different. Lyme could definitely cause the tingling that you describe.
Carrie
My cd57 was a 39, and my G.P told me that I do have lyme, and now wants me to get tested with ignex for co - infections etc.
With the symptons though, my tingling has always been in the same place, such as feet, hands etc, and has been coming and going since 2007, so does this make lyme more unlikely for me??????
With the symptons though, my tingling has always been in the same place, such as feet, hands etc, and has been coming and going since 2007, so does this make lyme more unlikely for me??????
Are you taking magnesium supplements? It makes a big difference in mood for me. Very soothing. Epsom salt baths have the same effect, because Epsom salts are ... magnesium! It's absorbed through the pores, and a warm bath is nice anyway.
Thanks Jackie and Wonko,
I am definitely having anxiety this last week. Thank you so much for your reassurance, it means more than you know.
I try to be confident about all this, but it seems this last week, I've been crumbling. Hope to get back on my confident feet soon. I'm so thankful that I have others like you to turn too because it just makes it so much easier to talk to someone who has been through this. No one else can understand the worry and anxiety these strange things can cause.
By the way, my titer for ehrlichiosis was 1:80, not 180. Anything greater than 1:60 on the Igenex test says "may suggest disease states".
Well, I plan on keeping myself busy tomorrow. Going to the Farmer's Market and to Nordstroms. But for tonight, it's jammie time.
Take care and I hope we all have a good weekend.
Carrie
I am definitely having anxiety this last week. Thank you so much for your reassurance, it means more than you know.
I try to be confident about all this, but it seems this last week, I've been crumbling. Hope to get back on my confident feet soon. I'm so thankful that I have others like you to turn too because it just makes it so much easier to talk to someone who has been through this. No one else can understand the worry and anxiety these strange things can cause.
By the way, my titer for ehrlichiosis was 1:80, not 180. Anything greater than 1:60 on the Igenex test says "may suggest disease states".
Well, I plan on keeping myself busy tomorrow. Going to the Farmer's Market and to Nordstroms. But for tonight, it's jammie time.
Take care and I hope we all have a good weekend.
Carrie
and PS about the CD57 test levels. These are not like the + and - signs on a pregnancy test. It's more like a thermometer that says your temperature is 97.4. Sure, that's high, but does it mean you are sick, or just warm from wearing too many clothes or exercising? The temp is an indicator that has to be interpreted in view of all other circumstances.
If you just came in from a run on a hot day, you're probably not sick.
If you're coughing and have a sore throat, you're more likely sick.
Lyme tests are indicators like a thermometer -- indicators, not the last word.
If you just came in from a run on a hot day, you're probably not sick.
If you're coughing and have a sore throat, you're more likely sick.
Lyme tests are indicators like a thermometer -- indicators, not the last word.
Carrie
I'd only add to Wonko's commentary that I would not discount the very real effects of tickborne disease infections on one's emotional state. The entire endocrine system, the brain and nerves, and physical systems (digestive, joints, etc.) are all impacted by Lyme and its friends.
Mood, memory and cognition (thinking) can be and often are impacted by Lyme, sometimes severely. They were in me, but it's very hard to compensate for that when you're in the middle of it all. It's like telling someone with a bad case of the flu just to ignore the symptoms and act normal. Not gonna happen.
Lyme causes inflammation of joints (in some people more than others) and also of the nerves and brain (also in some people more than others, and at different levels over time in the same person).
So if you are feeling more anxious and confused and forgetful than usual, it's the bugz. There are stretches of time over the past few years when I was very very ill that do not have clear memories of things that happened, but I also find that much of what I thought was lost has come back.
The uncertainty and disagreement in the medical community over Lyme and its diagnosis and treatment simple up the ante for all of us, but it is what it is. Knowing that anxiety is part of Lyme can make it easier to ride out the storms.
It is very hard to be in the middle of an anxiety attack and not be anxious (duh), but try to calm yourself and find things that can help, like a walk, or some calming tea, or a warm bath of epsom salts, or whatever works for you. Sometimes only time will work until the spell passes, but it will pass.
I'd only add to Wonko's commentary that I would not discount the very real effects of tickborne disease infections on one's emotional state. The entire endocrine system, the brain and nerves, and physical systems (digestive, joints, etc.) are all impacted by Lyme and its friends.
Mood, memory and cognition (thinking) can be and often are impacted by Lyme, sometimes severely. They were in me, but it's very hard to compensate for that when you're in the middle of it all. It's like telling someone with a bad case of the flu just to ignore the symptoms and act normal. Not gonna happen.
Lyme causes inflammation of joints (in some people more than others) and also of the nerves and brain (also in some people more than others, and at different levels over time in the same person).
So if you are feeling more anxious and confused and forgetful than usual, it's the bugz. There are stretches of time over the past few years when I was very very ill that do not have clear memories of things that happened, but I also find that much of what I thought was lost has come back.
The uncertainty and disagreement in the medical community over Lyme and its diagnosis and treatment simple up the ante for all of us, but it is what it is. Knowing that anxiety is part of Lyme can make it easier to ride out the storms.
It is very hard to be in the middle of an anxiety attack and not be anxious (duh), but try to calm yourself and find things that can help, like a walk, or some calming tea, or a warm bath of epsom salts, or whatever works for you. Sometimes only time will work until the spell passes, but it will pass.
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My CD57 was over 100 before I started treatment, and my LLMD has not bothered to check it since. I've been treating Lyme/infections for about 2.5 years, continually making slow, but undeniable progress. No single blood test can confirm or rule out Lyme. Not all Lyme patients have low CD57. To my knowledge, it is not written or said anywhere that Lyme must cause low CD57.
The other serological results you post show more positive results than all of my Lyme/infection testing combined. I was really a clinical dx, negative for
I currently do not believe that I have MS. When I first got very sick, I had 8 MRI brain lesions at age 28 and was, for a time, very concerned about MS. My LP was negative for both MS and Lyme. I had 4 neurologist and 1 rheumatologist and 1 PCP all firmly insist that while they could not diagnose me, they were certain that I did not have Lyme. I only got my dx because I ignored all of their opinions and instead sought out an ILADS-LLMD.
Giving the Lyme treatment time got me past the anxiety of a wrong diagnosis. While I still don't honestly believe 100% that I have Lyme or other tick borne infections, I know I respond to abx and do believe that I have some form of treatable chronic infection. It's frustrating not to have 100% certainty, but I've had enough improvement to be able to go on faith. It simply took time to get there. I felt completely awful for the first 9 months of treatment.
You can ask about your symptoms over on the MS forum, but for what it's worth here is my $0.02: The symptoms caused by MS result from damage to specific areas in the CNS. That typically results in MS symptoms that occur in the same spot and symptoms that persist for long periods of time with no interruption. MS symptoms also typically present in a unilateral way, affecting one side of the body much more so than the other.
With Lyme/co-infections, neuro symptoms can be transient (here one day, gone the next) and they tend to move about more. For example, in my case, I had constant tingling in my hands, face, and feet for over a year. But I would also experience fleeting zaps and tingles literally all over my body. That scenario better fits Lyme/Co, because both my left and right hand/feet tingled, and the other zaps/tingling occurred in seemingly random places.
It was also my experience that I did not have any joint pain for a long time into my illness. My presentation was all neurological. (Though in hindsight, I had other symptoms for years that I simply didn't recognize.)
I've also suffered what to me where terrifying cognitive problems due to my illness. There were days when I couldn't recite my own phone number, or add two and two. I absolutely had to use pill cases, otherwise I would take my meds but not remember and end up taking double amounts. I became worthless at my job. I could list more, but I won't. I'm back to working full time, with no one at my current work aware of my illness. I got my position in a very competitive job market, and while I would be lying to say that it's always easy for me given my heath, I do seem to be holding my own. I still have "brain fog" days, but on my good days I feel that most of my mind has returned.
Currently I can't say anything to help with your concerns about coming off of abx only to have symptoms return, as I'm still treating and not ready to stop. However, while I hate taking them, I'd gladly take maintenance abx for the rest of my life if it meant an overall better quality for me. I hope that will not be the case and that I can stop. But if I relapse, then I'll deal with it. That bridge is far off for me and even further off for you, so consider putting that worry onto a back burner.
So, that is my rambling reply highlighting some of my past worries. Your mileage may vary, but I found that worrying about other possible dx's even though I had already been thoroughly tested for everything under the sun was not a good use of my emotional strength. But again, it took time and a response to treatment for me to get to the point that my nerves were quieted.
Hope you have a good weekend.