Aa
Low CD57?
My Dr. just got some of my test results back and it shows that my CD57 count is 8. That is extremely low. I am very worried. The Dr. strongly feels this is Lymes but has not been confirmed. I see post that state that HIV could indicate that but all my screenings for HIV are negative. Not to mention I have had a lumbar puncture done as well. My Lumbar indicated that my Lymes was negative but my Dr. strongly feels it is lymes and therefore ordered this test. My Lumbar did show signs of contamination of the skin in which CDC was unclear as to what this could be. I am hoping to get an answer soon, I am currently having neurological symptoms which Neurologist thinks it could be MS as I have had abnormal MRIs as well. If anyone has any thoughts please share.
I thought I had MS, lupus and many other illnesses. I also only did orals. I am still in treatment but have improved since finding the LLMD.
Keep us posted.
Keep us posted.
Thank you so much. This is such a serious disease and people are not educated enough about it which results in misunderstanding and thinking this is a simply fix. I never even thought about this until we met with this Dr. I honestly thought I had MS. Its just a blessing that the Lord sent this man our way. Thank you again and I hope to keep in touch as I fell as if there are people out there that understand what pain I am dealing with. Its nice to have a support group like this.
I finished treatment a couple of years ago -- first for babesiosis (similar to malaria), and then for Lyme.
My LLMD is very well known in the Lyme community, and his approach for me was oral meds only, not IV. There is no one single right way to treat Lyme+, tho some docs take one single approach for every patient no matter what. IMO, a good doc will bob-and-weave and change things up depending on the combination of infections each person has and how the person's individual immune system reacts to the treatment approach.
For some/many who are under treatment, the symptoms do get worse at the beginning, because the meds are killing the bacteria, which as they die release toxins that irritate your body and make you feel worse temporarily. That's called a Herxheimer reaction (Herx for short), and if it is severe, the doc may cut back on the dosage -- but it's the doc who has to make that call.
(Reducing or stopping the meds without the doc's specific direction can result in drug-resistant bacteria that can spread, and then we are all in deep trouble. It's why the prescription labels say "Take as directed and finish all the medication as indicated" -- tho I have heard people say things like "Oh, I felt better after a few days and didn't want to get dependent on pills, so I stopped taking them" -- no, no, no. No one gets hooked on antibiotics, but stopping before all the bacteria are all dead just results in drug-resistant bugs that will be impossible to treat.)
So don't worry about the symptoms getting worse from 'die-off' -- it means the meds are working. If you find the symptoms intolerable, tho, call the doc and report the situation so the doc can make the call on what to do.
Sorry for the long answer to your very good questions.
Bottom line: don't be afraid of the meds -- they will get you better, and that is what is important.
My LLMD is very well known in the Lyme community, and his approach for me was oral meds only, not IV. There is no one single right way to treat Lyme+, tho some docs take one single approach for every patient no matter what. IMO, a good doc will bob-and-weave and change things up depending on the combination of infections each person has and how the person's individual immune system reacts to the treatment approach.
For some/many who are under treatment, the symptoms do get worse at the beginning, because the meds are killing the bacteria, which as they die release toxins that irritate your body and make you feel worse temporarily. That's called a Herxheimer reaction (Herx for short), and if it is severe, the doc may cut back on the dosage -- but it's the doc who has to make that call.
(Reducing or stopping the meds without the doc's specific direction can result in drug-resistant bacteria that can spread, and then we are all in deep trouble. It's why the prescription labels say "Take as directed and finish all the medication as indicated" -- tho I have heard people say things like "Oh, I felt better after a few days and didn't want to get dependent on pills, so I stopped taking them" -- no, no, no. No one gets hooked on antibiotics, but stopping before all the bacteria are all dead just results in drug-resistant bugs that will be impossible to treat.)
So don't worry about the symptoms getting worse from 'die-off' -- it means the meds are working. If you find the symptoms intolerable, tho, call the doc and report the situation so the doc can make the call on what to do.
Sorry for the long answer to your very good questions.
Bottom line: don't be afraid of the meds -- they will get you better, and that is what is important.
Are you on any treatment plans from the Dr. like the IV treatments? And if so is it true that the symptoms get worse once you start treatment but then they get a lot better?
You're welcome -- we're glad to share our experiences and understandings.
It's very common to be fearful and anxious about all this -- partly because it's normal to worry when one is ill, and partly because Lyme affects the brain and body chemistry in a way to CAUSE anxiety and fear. It's a biochemical effect of the infection, but it's also a normal response to being ill with an infection on which the medical community is in disarray.
Once I knew I had Lyme and did some reading about it, I cut myself some serious slack about being anxious, knowing that it wasn't just silly me wigging out, it was a direct effect of the infection. Of course I couldn't tell the difference between what was a disease effect and what was fear and anxiety generated by worry, but rest assured, the anxiety will go away as you are treated.
You might also want to try magnesium supplements, but be sure to tell your doc you are taking them, just they can factor it in to your symptoms and treatment. You know how babies get floppy after a bottle? It's partly full stomach, partly the warmth, and partly the magnesium in the milk.
Lyme bacteria use up magnesium (Mg), and it's very easy to be deficient, besides the fact that the American diet is often low in Mg. I take Mg supplements even now, and it's very soothing. I have read that any variety ending in "-ate" is most easily absorbed by the body; I take a brand that blends Mg citrate, aspartate and orotate, and it works for me, but it may be different in everyone.
About the Lyme specialist your doc is sending you to -- listen (and take notes if your memory is as frazzed as mine was) about the recommendations and game plan, and then if you like, let us know what the doc said and we can comment based on our personal experiences and reading. No one here is medically trained that I know of, but we've all been through various issues with getting proper diagnosis and treatment.
There is a terrible split in the medical community about Lyme, and often you can't tell which side of the divide a doc falls on until you meet with them and hear their approach and commentary. Then let us know what the doc said and we will be happy to tell you what we think, for what it's worth.
I personally went through more than 20 MDs of various kinds before one doc at a renowned medical center ran a Lyme test out of desperation. It came back positive, but the doc said, in very gentle tones, that I couldn't possibly have Lyme, because she had patients with Lyme, and they were all 'near death.' Well, Dr Stooge, if you don't TREAT people, they WILL get worse! I don't know that people commonly die from Lyme, it's more like long-term misery, but the point stands.
I took that positive test result from Dr Stooge, found a Lyme specialist, got treated properly, and got my life back. We're here to help you too.
Take care, keep us posted --
It's very common to be fearful and anxious about all this -- partly because it's normal to worry when one is ill, and partly because Lyme affects the brain and body chemistry in a way to CAUSE anxiety and fear. It's a biochemical effect of the infection, but it's also a normal response to being ill with an infection on which the medical community is in disarray.
Once I knew I had Lyme and did some reading about it, I cut myself some serious slack about being anxious, knowing that it wasn't just silly me wigging out, it was a direct effect of the infection. Of course I couldn't tell the difference between what was a disease effect and what was fear and anxiety generated by worry, but rest assured, the anxiety will go away as you are treated.
You might also want to try magnesium supplements, but be sure to tell your doc you are taking them, just they can factor it in to your symptoms and treatment. You know how babies get floppy after a bottle? It's partly full stomach, partly the warmth, and partly the magnesium in the milk.
Lyme bacteria use up magnesium (Mg), and it's very easy to be deficient, besides the fact that the American diet is often low in Mg. I take Mg supplements even now, and it's very soothing. I have read that any variety ending in "-ate" is most easily absorbed by the body; I take a brand that blends Mg citrate, aspartate and orotate, and it works for me, but it may be different in everyone.
About the Lyme specialist your doc is sending you to -- listen (and take notes if your memory is as frazzed as mine was) about the recommendations and game plan, and then if you like, let us know what the doc said and we can comment based on our personal experiences and reading. No one here is medically trained that I know of, but we've all been through various issues with getting proper diagnosis and treatment.
There is a terrible split in the medical community about Lyme, and often you can't tell which side of the divide a doc falls on until you meet with them and hear their approach and commentary. Then let us know what the doc said and we will be happy to tell you what we think, for what it's worth.
I personally went through more than 20 MDs of various kinds before one doc at a renowned medical center ran a Lyme test out of desperation. It came back positive, but the doc said, in very gentle tones, that I couldn't possibly have Lyme, because she had patients with Lyme, and they were all 'near death.' Well, Dr Stooge, if you don't TREAT people, they WILL get worse! I don't know that people commonly die from Lyme, it's more like long-term misery, but the point stands.
I took that positive test result from Dr Stooge, found a Lyme specialist, got treated properly, and got my life back. We're here to help you too.
Take care, keep us posted --
Thank you for this info. I am really scared. I think it is more so if this is Lyme I am worried about the treatment and if I will take well to it. My Dr. that I am working with is sending me to a Lyme specialist so thats covered But I am hoping that somehow we can get the insurance to somehow get on board with this.
My Lyme was misdiagnosed for MS. I had the lesions and neuro symptoms.
It turned out it came from the co-infection, bartonella. A good LLMD will use IgenX labs so it's important to find one from ILADS or google for one.
Good luck.
It turned out it came from the co-infection, bartonella. A good LLMD will use IgenX labs so it's important to find one from ILADS or google for one.
Good luck.
My Lyme disease mimiced MS also. My neuro had already scheduled an LP to look for markers for MS, Cancer, and sarcoid when I came across Lyme in my research. It was the only thing I had found that explained all my symptoms. He added in a Lyme antibody test to the CSF tests, but it came back negative.
It is terrific that your doctor still believes you can have Lyme with a negative in the CSF. Doctors have been told for years by the IDSA and the CDC that a negative in the CSF excludes Lyme. It is absolutely untrue.
I have also read that only HIV and Lyme suppress the CD 57, which is a particular immune cell.
You need a Western Blot test that shows all relevant bands, not just the ones the CDC looks at. IGeneX is the best, but many doctors are unfamiliar with them. Stonybrook or Quest are lesser alternatives. You can show Lyme specific bands even if you are CDC negative.
Keep us posted.
It is terrific that your doctor still believes you can have Lyme with a negative in the CSF. Doctors have been told for years by the IDSA and the CDC that a negative in the CSF excludes Lyme. It is absolutely untrue.
I have also read that only HIV and Lyme suppress the CD 57, which is a particular immune cell.
You need a Western Blot test that shows all relevant bands, not just the ones the CDC looks at. IGeneX is the best, but many doctors are unfamiliar with them. Stonybrook or Quest are lesser alternatives. You can show Lyme specific bands even if you are CDC negative.
Keep us posted.
Oops, grammar error above ...
The 4th paragraph should begin:
"About the neurologist **NOT** thinking your MRIs indicate Lyme, that is often because neurologists do not look for Lyme, which is difficult to tell from MS in the fuzzy bits that show up on an MRI. ..."
The 4th paragraph should begin:
"About the neurologist **NOT** thinking your MRIs indicate Lyme, that is often because neurologists do not look for Lyme, which is difficult to tell from MS in the fuzzy bits that show up on an MRI. ..."
Welcome, Mrs Cleaver!
Sorry to hear you are going through what many of us have as well, but we're glad to share what we've learned along the way.
Don't worry about the CD57 count. It will come back when the Lyme is treated. It's a handy marker, and it's good news that your doc even bothered to test for it, but it's a marker only and not a prediction of bad things to come.
Lumbar puncture is not particularly helpful in diagnosing or in ruling out Lyme, because the Lyme bacteria do not often show up in spinal fluid -- it's just not their neighborhood. However, mainstream docs follow this approach because ... it's all they know how to do. I'm not medically trained, but knowing what I do now (and having been through Lyme a few years ago), I would not give the lack of Lyme present in spinal fluid a second thought. If Lyme was found there, it would be meaningful; but its absence is not meaningful.
About the neurologist thinking your MRIs indicate Lyme, that is often because neurologists do not look for Lyme, which is difficult to tell from MS in the fuzzy bits that show up on an MRI. Neurologists are right up there with infectious disease docs in not 'believing' in Lyme, and so they look for something they ARE familiar with, and for a neuro, that's MS.
I understand from someone who posts here that a good radiologist and neurologist CAN tell Lyme from MS on an MRI, but most cannot. There is another test that Lyme specialists used, called a SPECT scan, which looks for swelling in the brain, which is what Lyme does but MS does not. But nonLyme specialists don't use SPECT scans, because in the nonLyme world, Lyme is rare and hard to get.
Are you seeing a theme here? It sounds crazy, but there really is a split in the medical community, and the trick is to find a Lyme specialist. A Lyme doc can be in any specialty or even a GP -- what matters is that they have an open mind and are familiar with Lyme and the other diseases that the same ticks carry about half the time (and these need separate testing and often different antibiotic treatment from Lyme).
You will see the term LLMD, which is not an official title but instead is patient slang for a doc who thinks bigger thoughts about Lyme and its coinfections. In your situation (and I was there not so long ago), I would find an LLMD and take all the previous test results for a second opinion.
I know, this is the last thing you have energy and money for, but it is what I would do, with no doubts. Because Lyme is a developing field, there are docs who think they are LLMDs but really aren't, so getting a recommendation is a good idea.
Try not to worry, and you may want to continue with your current doc, since he sounds willing, but if he is looking to a lumbar puncture to help diagnose you, then he's not with the program.
Let us know if you need help finding an LLMD.
I just google/searched for
LLMD Illinois
and found lots of links to websites like this one, in case no one here has a rec. for you.
Also email to
contact [at] ilads [dot] org
and tell them where you are and how far you can travel. ILADS is the main voluntary professional group for Lyme docs. They have a big website, but don't be overwhelmed by it.
Let us know how we can help, okay? You're not alone in facing this, and you can get well -- I'm proof.
Sorry to hear you are going through what many of us have as well, but we're glad to share what we've learned along the way.
Don't worry about the CD57 count. It will come back when the Lyme is treated. It's a handy marker, and it's good news that your doc even bothered to test for it, but it's a marker only and not a prediction of bad things to come.
Lumbar puncture is not particularly helpful in diagnosing or in ruling out Lyme, because the Lyme bacteria do not often show up in spinal fluid -- it's just not their neighborhood. However, mainstream docs follow this approach because ... it's all they know how to do. I'm not medically trained, but knowing what I do now (and having been through Lyme a few years ago), I would not give the lack of Lyme present in spinal fluid a second thought. If Lyme was found there, it would be meaningful; but its absence is not meaningful.
About the neurologist thinking your MRIs indicate Lyme, that is often because neurologists do not look for Lyme, which is difficult to tell from MS in the fuzzy bits that show up on an MRI. Neurologists are right up there with infectious disease docs in not 'believing' in Lyme, and so they look for something they ARE familiar with, and for a neuro, that's MS.
I understand from someone who posts here that a good radiologist and neurologist CAN tell Lyme from MS on an MRI, but most cannot. There is another test that Lyme specialists used, called a SPECT scan, which looks for swelling in the brain, which is what Lyme does but MS does not. But nonLyme specialists don't use SPECT scans, because in the nonLyme world, Lyme is rare and hard to get.
Are you seeing a theme here? It sounds crazy, but there really is a split in the medical community, and the trick is to find a Lyme specialist. A Lyme doc can be in any specialty or even a GP -- what matters is that they have an open mind and are familiar with Lyme and the other diseases that the same ticks carry about half the time (and these need separate testing and often different antibiotic treatment from Lyme).
You will see the term LLMD, which is not an official title but instead is patient slang for a doc who thinks bigger thoughts about Lyme and its coinfections. In your situation (and I was there not so long ago), I would find an LLMD and take all the previous test results for a second opinion.
I know, this is the last thing you have energy and money for, but it is what I would do, with no doubts. Because Lyme is a developing field, there are docs who think they are LLMDs but really aren't, so getting a recommendation is a good idea.
Try not to worry, and you may want to continue with your current doc, since he sounds willing, but if he is looking to a lumbar puncture to help diagnose you, then he's not with the program.
Let us know if you need help finding an LLMD.
I just google/searched for
LLMD Illinois
and found lots of links to websites like this one, in case no one here has a rec. for you.
Also email to
contact [at] ilads [dot] org
and tell them where you are and how far you can travel. ILADS is the main voluntary professional group for Lyme docs. They have a big website, but don't be overwhelmed by it.
Let us know how we can help, okay? You're not alone in facing this, and you can get well -- I'm proof.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
