Aa
cd57 test low
I recently had a cd57 test done by labcorp and got the reults back with an alert notice that test was low like 20 does any one know what this means I ask my nuro and he said whos the doc that ordered it, I said well I guess your looking at him! What a joke these docs really cover each others*(^*
Best
Paulo
Best
Paulo
yes I did the chylimida pnemone test and waiting on urian results, they screwed up the first test said there was hi nitrates went over to clinic and had testing done no infection, this isx getting not only expensive but frustrating! But I have gone this far one more hurtle
I skimmed the above because of vision problems so please get the co-infection test if nobody else mentioned it.
Medical articles that relay the information that doxycycline is also used for late stage Lyme disease are plentiful. If you like I'll send you a few links for them.
There are also web sites by doctors that treat Lyme disease, both new and old infections, that relate the use of doxycycline for all stages (if, indeed, one can ever tell if it's early or late disease).
There are also web sites by doctors that treat Lyme disease, both new and old infections, that relate the use of doxycycline for all stages (if, indeed, one can ever tell if it's early or late disease).
Thks for the indepth responces it means allot to me to be able to reach out to you all, I will seek out a llmd and see what we can do, meantime Ill fake another injection. Life will go on! will keep you posted!
and one more comment ... docs who do not understand Lyme particularly well (esp. neurologists and infectious disease specialists) often diagnose MS instead of Lyme.
That's why seeing a Lyme specialist is so critical. Lyme just isn't on the radar for neuros and ID docs. Personally, I would sneak off to see a Lyme doc and not tell my neuro/ID doc that I was doing so, only because you may need those other docs at some point, and they can get kind of weird if they know you've seen a Lyme doc. To them, it's like going to a witch doctor.
I know, it sounds squirrely, but that's the state the medical community is in. I got very guarded about telling my other docs I was being treated by a Lyme doc ... and I'm a great believer in keeping ALL my docs informed about what else is going on with my health, just so it can be factored in to other findings.
It turns out that ophthalmologists (MDs specializing in eyes) are VERY up to date on Lyme, but infectious disease docs and rheumatologists are not. Go figure. So the docs that you are seeing now may get really weird if they know you are going to see an LLMD, which may well seem the equivalent of a witch doctor to the doc who diagnosed you with MS. MS is a common misdiagnosis for Lyme, so I read.
This is life through Alice in Wonderland's looking glass, I know ... we are taught to believe that all docs are wise and harmonious, but they are not. They like to think they already know everything worth knowing, but Mother Nature doesn't play by that rule book. Just accept the split in the medical community for now and do what you have to do be fully and properly diagnosed, and then decide which way to go.
Most of us have been through some form of what you are going through. Me with my 20 docs who didn't know what was up with me -- only one of them looked me in the eye and said, "I know you are sick, I just don't know what it is." That honesty was a great kindness, and it gave me the courage to keep looking.
Docs by their nature and by the work they do need to believe they are in command of all things worth knowing, and humility gets lost in the mix sometimes. In this day of 'modern' medicine, new and emerging diseases just aren't on the doc's radar ... too bad, but it's how it is.
So go for it, and be not afraid. You can do it. We're here -- stay in touch.
That's why seeing a Lyme specialist is so critical. Lyme just isn't on the radar for neuros and ID docs. Personally, I would sneak off to see a Lyme doc and not tell my neuro/ID doc that I was doing so, only because you may need those other docs at some point, and they can get kind of weird if they know you've seen a Lyme doc. To them, it's like going to a witch doctor.
I know, it sounds squirrely, but that's the state the medical community is in. I got very guarded about telling my other docs I was being treated by a Lyme doc ... and I'm a great believer in keeping ALL my docs informed about what else is going on with my health, just so it can be factored in to other findings.
It turns out that ophthalmologists (MDs specializing in eyes) are VERY up to date on Lyme, but infectious disease docs and rheumatologists are not. Go figure. So the docs that you are seeing now may get really weird if they know you are going to see an LLMD, which may well seem the equivalent of a witch doctor to the doc who diagnosed you with MS. MS is a common misdiagnosis for Lyme, so I read.
This is life through Alice in Wonderland's looking glass, I know ... we are taught to believe that all docs are wise and harmonious, but they are not. They like to think they already know everything worth knowing, but Mother Nature doesn't play by that rule book. Just accept the split in the medical community for now and do what you have to do be fully and properly diagnosed, and then decide which way to go.
Most of us have been through some form of what you are going through. Me with my 20 docs who didn't know what was up with me -- only one of them looked me in the eye and said, "I know you are sick, I just don't know what it is." That honesty was a great kindness, and it gave me the courage to keep looking.
Docs by their nature and by the work they do need to believe they are in command of all things worth knowing, and humility gets lost in the mix sometimes. In this day of 'modern' medicine, new and emerging diseases just aren't on the doc's radar ... too bad, but it's how it is.
So go for it, and be not afraid. You can do it. We're here -- stay in touch.
PS -- don't be too distressed about the neurologist who blew off your test result. There are certain specialties of MDs who, as an article of faith, do not 'believe' in Lyme, and neuros are at the top of that list.
Also, an MRI is not particularly diagnostic for Lyme. A SPECT scan is better, but leave that to your LLMD to decide on. The reason is that a SPECT scan looks for low blood flow in areas of your brain due to swelling that can be caused by, among other things, Lyme.
CD57 test is something my LLMD used as well, but it's my impression that it's not a particularly reliable indicator ... it is a piece of data that an LLMD knows how to value, but it is not like the '+' or '--' pregnancy tests -- it's a much more subtle indicator, and it is not a direct indicator of lyme, but instead looks at your immune system's reaction. It's my vague understanding that a reaction on the CD57 is a good piece of data for an llmd to use in looking at the overall picture, but a normal result on the CD57 test is not particular meaningful. So don't sweat it.
Lyme is NOT a cure-it-yourself illness, but you have done a really good job sorting through what you have already. Now is the time to find a Lyme specialist, take ALL your lab results with you, and get well!
Let us know how we can help. And go check out the Chicago Lyme website. You'll be glad you did.
Also, an MRI is not particularly diagnostic for Lyme. A SPECT scan is better, but leave that to your LLMD to decide on. The reason is that a SPECT scan looks for low blood flow in areas of your brain due to swelling that can be caused by, among other things, Lyme.
CD57 test is something my LLMD used as well, but it's my impression that it's not a particularly reliable indicator ... it is a piece of data that an LLMD knows how to value, but it is not like the '+' or '--' pregnancy tests -- it's a much more subtle indicator, and it is not a direct indicator of lyme, but instead looks at your immune system's reaction. It's my vague understanding that a reaction on the CD57 is a good piece of data for an llmd to use in looking at the overall picture, but a normal result on the CD57 test is not particular meaningful. So don't sweat it.
Lyme is NOT a cure-it-yourself illness, but you have done a really good job sorting through what you have already. Now is the time to find a Lyme specialist, take ALL your lab results with you, and get well!
Let us know how we can help. And go check out the Chicago Lyme website. You'll be glad you did.
We can all understand your situation -- many if not most or all of us have been through the mess the medical community is in about Lyme. I saw 20 highly trained and reputable MDs with no diagnosis, before one finally in desperation did a Lyme test. When it came back positive, the doc said the test must be wrong. So what you are going through is unfortunately not unusual.
I took that test result and found a Lyme specialist, got properly diagnosed with Lyme and another infection the Lyme ticks often carry, was treated, and am well today. Same for another member of my family.
What you are going through in finding a doc who will fully consider Lyme as a possibility is unfortunately not uncommon. It will change as the docs figure out the error of their ways, but it won't be this week.
The trick in the meantime is to find docs who DO understand Lyme and focus on getting a full diagnosis and appropriate treatment.
Doxycycline works against Lyme at the early stages of the infection, but at some point after infection -- and there's no solid way to know when that point has been passed -- doxy may not be effective, because Lyme has the ability to hide from your immune system inside slimy shields the bacteria create (called biofilms), and what the immune system can't see, it can't kill. And on top of that, about half the 'Lyme' ticks also carry other infections that do not respond to doxy, referred to generally as 'co-infections'.
The supposedly 'standard' treatment for Lyme is doxy, but docs who do not specialize in Lyme don't understand how ineffective it can be, nor do they generally look for co-infections.
The anxiety you are feeling is common, partly because you're concerned about the care you are getting, and partly because Lyme bacteria mess with the endocrine system, which means your mood. The anxiety will go away when the Lyme is treated.
It's good that you are being tested by IgeneX -- they have a type of test that is superior to the usual tests, but docs who are not Lyme specialists do not tend to use IgeneX, because non-Lyme docs usually don't keep up with developments in the field when it comes to a disease like Lyme that has supposedly been classified, boxed and put on the shelf as 'hard to get and easy to cure.'
There ARE Lyme specialists out there, and it is the way to go. Thirty years ago, when AIDS first began to spread through the population, the medical community reacted the same way they have toward Lyme -- denial. Docs are fond of thinking that the world of disease is static and will not change, but the bacteria of the world didn't get that memo. That's the bad news.
The good news is that there ARE docs who do understand Lyme, and as stated above, you need to get yourself to one of those docs. Don't worry about the politics of Lyme, just get well. The anxiety you are feeling is a direct effect of the Lyme on your endocrine (hormonal) system, and it will calm down once you are treated.
It's good that you are being tested by IGeneX, so try to chill and wait for the results. It won't be long. In the meantime, try taking magnesium supplements, any formulation ending in '-ate', such as magnesium malate, or aspartate, or orotate, or citrate. And skip the 'cal-mag' combo of calcium and magnesium, for some reason it doesn't seem to be very effective from what others have said. Lyme bacteria use up the magnesium in your system, and that causes anxiety. Trust me on this, it makes a HUGE difference in how you feel.
You can also try soaking in a bath (or even just a foot bath) of Epsom salts, which are themselves magnesium. It's very soothing. It's possible to take too much magnesium, but you won't take too much through the bathing, I don't think ... it's just the pill form of magnesium that you can do that with.
I am long done with my Lyme treatment, but I still take magnesium supplements every day, because it is apparently deficient in the usual American diet, partly because modern farming has stripped much of the Mg out of the soil, so I read. Mg is very soothing over all -- think of a baby when it has a full bottle of milk in its stomach -- the baby gets all floppy and sleepy and content, partly bec. of the full stomach, but also partly because milk is loaded with ... magnesium.
If you take Mg supplements, don't over do, but if you do take too much, I understand you will get diarrhea, and if that happens, then back off on the dose.
This will help you calm down and deal with the mechanics of testing and doc-finding and so on, and then you're on your way to getting well. Been there, done that.
So go get some Mg and go for it. IgeneX is an excellent lab, and you are doing the right thing, imo. Take care, and keep us posted, ok?
PS ===>>>> There is a group online called chicagolyme [dot] com -- check their website. It's quite extensive and well done -- it focus on the Lyme patient and how to deal with all of the attendant distress and hassles -- support groups, information, leads to docs, all sorts of things. It's what I would do.
Bottom line: you're not alone in this, there are docs and people who can and will help you through it all. Hang on, and take your Mg! Keep us posted, okay?
I took that test result and found a Lyme specialist, got properly diagnosed with Lyme and another infection the Lyme ticks often carry, was treated, and am well today. Same for another member of my family.
What you are going through in finding a doc who will fully consider Lyme as a possibility is unfortunately not uncommon. It will change as the docs figure out the error of their ways, but it won't be this week.
The trick in the meantime is to find docs who DO understand Lyme and focus on getting a full diagnosis and appropriate treatment.
Doxycycline works against Lyme at the early stages of the infection, but at some point after infection -- and there's no solid way to know when that point has been passed -- doxy may not be effective, because Lyme has the ability to hide from your immune system inside slimy shields the bacteria create (called biofilms), and what the immune system can't see, it can't kill. And on top of that, about half the 'Lyme' ticks also carry other infections that do not respond to doxy, referred to generally as 'co-infections'.
The supposedly 'standard' treatment for Lyme is doxy, but docs who do not specialize in Lyme don't understand how ineffective it can be, nor do they generally look for co-infections.
The anxiety you are feeling is common, partly because you're concerned about the care you are getting, and partly because Lyme bacteria mess with the endocrine system, which means your mood. The anxiety will go away when the Lyme is treated.
It's good that you are being tested by IgeneX -- they have a type of test that is superior to the usual tests, but docs who are not Lyme specialists do not tend to use IgeneX, because non-Lyme docs usually don't keep up with developments in the field when it comes to a disease like Lyme that has supposedly been classified, boxed and put on the shelf as 'hard to get and easy to cure.'
There ARE Lyme specialists out there, and it is the way to go. Thirty years ago, when AIDS first began to spread through the population, the medical community reacted the same way they have toward Lyme -- denial. Docs are fond of thinking that the world of disease is static and will not change, but the bacteria of the world didn't get that memo. That's the bad news.
The good news is that there ARE docs who do understand Lyme, and as stated above, you need to get yourself to one of those docs. Don't worry about the politics of Lyme, just get well. The anxiety you are feeling is a direct effect of the Lyme on your endocrine (hormonal) system, and it will calm down once you are treated.
It's good that you are being tested by IGeneX, so try to chill and wait for the results. It won't be long. In the meantime, try taking magnesium supplements, any formulation ending in '-ate', such as magnesium malate, or aspartate, or orotate, or citrate. And skip the 'cal-mag' combo of calcium and magnesium, for some reason it doesn't seem to be very effective from what others have said. Lyme bacteria use up the magnesium in your system, and that causes anxiety. Trust me on this, it makes a HUGE difference in how you feel.
You can also try soaking in a bath (or even just a foot bath) of Epsom salts, which are themselves magnesium. It's very soothing. It's possible to take too much magnesium, but you won't take too much through the bathing, I don't think ... it's just the pill form of magnesium that you can do that with.
I am long done with my Lyme treatment, but I still take magnesium supplements every day, because it is apparently deficient in the usual American diet, partly because modern farming has stripped much of the Mg out of the soil, so I read. Mg is very soothing over all -- think of a baby when it has a full bottle of milk in its stomach -- the baby gets all floppy and sleepy and content, partly bec. of the full stomach, but also partly because milk is loaded with ... magnesium.
If you take Mg supplements, don't over do, but if you do take too much, I understand you will get diarrhea, and if that happens, then back off on the dose.
This will help you calm down and deal with the mechanics of testing and doc-finding and so on, and then you're on your way to getting well. Been there, done that.
So go get some Mg and go for it. IgeneX is an excellent lab, and you are doing the right thing, imo. Take care, and keep us posted, ok?
PS ===>>>> There is a group online called chicagolyme [dot] com -- check their website. It's quite extensive and well done -- it focus on the Lyme patient and how to deal with all of the attendant distress and hassles -- support groups, information, leads to docs, all sorts of things. It's what I would do.
Bottom line: you're not alone in this, there are docs and people who can and will help you through it all. Hang on, and take your Mg! Keep us posted, okay?
After 2 weeks of dox I really do feel better like an infection is finnaly being beat down problem is I cant seem to tell my family that, they say the beta must be working (dx with ms) and I must be in remission. All I know is I have been faking taking the beta to appease them, sounds crazy but that is what I have to do to keep the peace. I am a little concerned that when I run out of doxy I will feel like crap and it will start over again.Oh must be relapsing, this MS DX is such a mind grab, I cant belive that docs are so quick to lable you with the heavy DX (MS) without really looking for anything else? yes I have mutiple scarring iin brain but none in spine, Bit by several ticks over the years....I do not even think its Lymes but somthing else? had cd 57 but docs do not know what it is or how to interprate it objectivly.Oh well instead of med marijuanna I should look for antibiotics? this seems insane,why cant I get a doc to look at my condition for what it is? Seems as though the nuroligist have a quite a grip or the radioligist that wrote up my mri ( I dont think the docs even looked at the scan just the report.In any case I am keeping my faith in myself and what I fell is best for me...I dont have cancer I am not being selfish I would do anything if it makes sense but MS DX to me does not fit? Maybee I need to see a beta seron rep to tell me (scare me) that I could do more damage to myself in the end? whaterver that meens. I have been taught by my father to question everything and do diligence it your life you get one shot in this life so dont mess with it. I feel better but am fearful that I am dx myself at this point with no real support from a medical stand point so I am waiting for my lab work from I genix but I have had most test come back neg and I am not to thrilled about the idea of lymes, but I seem to want it rather then MSdx but the thought of finding a doc to treat me is just as scarry, 100s of docs will treat ms and none for lymes, this is so insane I cant even belive it!
Oh well big business have the power and we the people are left to do it on our own! Thankfully we still have the internet (although I feel that wont last to long either as to many people now have the opportunity to communicate with each other... and thats not good for the big guys) God help our children!
Oh well big business have the power and we the people are left to do it on our own! Thankfully we still have the internet (although I feel that wont last to long either as to many people now have the opportunity to communicate with each other... and thats not good for the big guys) God help our children!
The way to do that is, as said above, is to go to ILADS.org and used their resource to send you the names of 3 different ILADS trained doctors who are in your area.
If you don't understand that I'm sure one of us can explain further.
If you don't understand that I'm sure one of us can explain further.
I was talking to a friend from Texas with Lyme. They only gave her 200 MG doxy. Its better then nothing, I had to start with that dosage until I got out of Tx. The dosage should be at least 400/day.
As mojo said, you need to find a reliable and good doctor who will test and treat for Lyme. Have you gone to ILADS.org and used their resource to send you the names of 3 different ILADS trained doctors who are in your area?
The words to be suspicious of is 'ILADS trained '. If you care to read my journal entry "Lyme specialist---- how to find one" please go to:
http://www.medhelp.org/user_journals/show/936013/Lyme-Specialist--how-to-find-one
I've presented the worst case scenario----- but it's also possible that one or more of the three will test and treat you according to ILADS guidelines. You sound appropriately suspicious in your other statements (length of treatment with doxy, betaseron etc) so you may be able to read between the lines.
You can also search on Google for Lyme doctor in IL---- but be careful. :) Because most people won't give out the names of Lyme doctors on public forums their names are 'hidden'. But I did manage to find the name of a couple which I can't mention here. :(
Briefly:
2 weeks of doxy is NOT what a good LLMD will rx according to the ILADS guidelines. Much much longer or even a different antibiotic since it seems as if you've had Lyme for much longer---- if you have it.
You say you feel better (after 3 days on doxy). Be cautioned that you may start to feel worse (Herxheimer reaction) soon. That's normal if you have Lyme disease, although distressing. Some people with Lyme never have a Herx.
In general a neurologist is not the best specialty to see about Lyme disease. That group usually follows the IDSA guidelines. It seems as if your neuro is doing that.
We're willing to answer more questions.
The words to be suspicious of is 'ILADS trained '. If you care to read my journal entry "Lyme specialist---- how to find one" please go to:
http://www.medhelp.org/user_journals/show/936013/Lyme-Specialist--how-to-find-one
I've presented the worst case scenario----- but it's also possible that one or more of the three will test and treat you according to ILADS guidelines. You sound appropriately suspicious in your other statements (length of treatment with doxy, betaseron etc) so you may be able to read between the lines.
You can also search on Google for Lyme doctor in IL---- but be careful. :) Because most people won't give out the names of Lyme doctors on public forums their names are 'hidden'. But I did manage to find the name of a couple which I can't mention here. :(
Briefly:
2 weeks of doxy is NOT what a good LLMD will rx according to the ILADS guidelines. Much much longer or even a different antibiotic since it seems as if you've had Lyme for much longer---- if you have it.
You say you feel better (after 3 days on doxy). Be cautioned that you may start to feel worse (Herxheimer reaction) soon. That's normal if you have Lyme disease, although distressing. Some people with Lyme never have a Herx.
In general a neurologist is not the best specialty to see about Lyme disease. That group usually follows the IDSA guidelines. It seems as if your neuro is doing that.
We're willing to answer more questions.
I had the same experience. Lesions in my brain and spine. Was told I had MS. I would run and find a LLMD if I were you.
My pharmacist had a friend who spent 20 years in a wheel chair from "MS" turned out to be Lyme. Now she walks. I talked to someone on twitter, who became a paraplegic due to Lyme. Now walks.
My CD-57 is low but now days they say its not reliable.
My pharmacist had a friend who spent 20 years in a wheel chair from "MS" turned out to be Lyme. Now she walks. I talked to someone on twitter, who became a paraplegic due to Lyme. Now walks.
My CD-57 is low but now days they say its not reliable.
thx for your reply, The Doc (Nuro) is salivtating at the dx of MS I could see it in his eyes patient for life! Although I did not tell him that I had been DSX by 2 other nuros, I just want a unbias oppinion and he seems willing to try the Doxcy although he said if you think its lime will do 2 weeks of docy and then go from there......? sounds like a classic setup as I know this treatment takes a long time, He wants to look closer at my spine for leesions as they did not show in privious MRI I have 2 leesions in brain, and all the classic symptoms of MS, and or lymes? I was bit in the head and have had several bites past 15 yrs never really gave it much thought? I am on the beta seron (cause it's free up to 10k per yr) small price for DX company to pay to keep out generic cheaper med) I have a low CD57 17 and labcorp sent a alert notice regarding it but he my nuro really doesnt know wht it means? 3 days on doxy and I feel better is it my lessioned brain playing games? need direction!
I assume, reading your post, that you ordered the CD57 test on your own through one of the online lab testing sites where you don't need a doctor to order them?
If so, I've always wondered how doctors would receive and value those tests and it seems as if your doctor might not have? Even though it was done at LabCorp which is a decent lab.
Which brings up the question----- if a patient has one of the online lab tests done and needs a doctor to tell him what to do about it (what meds to take, for instance) will all doctors respect that test result and treat accordingly?
Or will they leave it to the patient to ask a forum (with no doctors as members to answer their question?
You can go on line and google for the answers to your questions but be aware that the Internet is full of mis-information and you sort of need to know what's what there.
If so, I've always wondered how doctors would receive and value those tests and it seems as if your doctor might not have? Even though it was done at LabCorp which is a decent lab.
Which brings up the question----- if a patient has one of the online lab tests done and needs a doctor to tell him what to do about it (what meds to take, for instance) will all doctors respect that test result and treat accordingly?
Or will they leave it to the patient to ask a forum (with no doctors as members to answer their question?
You can go on line and google for the answers to your questions but be aware that the Internet is full of mis-information and you sort of need to know what's what there.
Here at MedHelp there are many people who believe that the CD57 test will show the progress (or non-progress) of their Lyme disease.
If that were so then why are so many people with a 'normal range of CD57 feel so desperately ill and why so many people, with very low CD57 ranges, feel almost no symptoms at all?
No one has yet come up with a valid reason. Not even the doctor who devised this test. He was my doctor and I asked him the same question.
As data collecting goes---- the CD57 might be a good test and only time might tell what it 'tells us'. As far as being diagnostic----- not a good test.
Its been replaced now by, I believe the C4a test.
You can read just one of the hotly contested threads about the CD57 test here:
http://www.medhelp.org/posts/Lyme-Disease/CD-57-and-NK-cells/show/1943925
If that were so then why are so many people with a 'normal range of CD57 feel so desperately ill and why so many people, with very low CD57 ranges, feel almost no symptoms at all?
No one has yet come up with a valid reason. Not even the doctor who devised this test. He was my doctor and I asked him the same question.
As data collecting goes---- the CD57 might be a good test and only time might tell what it 'tells us'. As far as being diagnostic----- not a good test.
Its been replaced now by, I believe the C4a test.
You can read just one of the hotly contested threads about the CD57 test here:
http://www.medhelp.org/posts/Lyme-Disease/CD-57-and-NK-cells/show/1943925
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