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CD-57 Levels & Lyme Disease

6/9/2013

39 Comments

 
We live in a world where instant gratification is the norm. It's hard to understand the concept of "6 months from now.." Or "a year from now." I will admit that fast paced mindset was how I used to be. And a part of me is still that way, when I set my mind to something it needs to happen ASAP. But I have also grown accustomed to letting time be a healer and having a bit more patience for things. Key words: a bit.

Going into this madness of Lyme disease I found myself let down a lot from the roller coaster ride of it all. So many ups and so many downs. It felt like some challenge was always infront of me, always a mounting list of troubles. I found myself not being able to notice subtle improvements because they were just that... Subtle. Healing with Lyme & co infections is like watching a flower blossom; if you watch it for hours you will never see it change. But if you see it before & after side by side you notice the growth.

Now that I'm about a year in of just solid treatment, I have been able to look back quite a bit from where I came from. I am able to see I AM better. My bad days now are actually better then what my good days used to be a year ago. When I crash now I don't crash as hard, and I can pick myself up quicker. Some symptoms spend longer times gone in between flares & others have gotten less intense. I feel so unbelievably lucky to have been able to see improvement. Being able to reflect & see this just shows me that I can get there, and to never lose hope. And that I can't give up, because I still have a way to go.

Today I want to talk about the CD-57 marker, and exactly what that is and why it is used in diagnostic Lyme disease testing.

The CD-57 level marker is a marker that a lot of LLMD's look at for Lyme disease because it is an extremely specific marker for Borrelia. Our body has many different Natural Killer (NK) cells, which are dedicated to certain organisms, and if that organism is present then those NK cells quickly get depleted. CD-57 is the name of the Natural Killers cells which attack Borrelia (Lyme disease). Therefore, checking the levels of CD-57 in your blood can show if there is an impact on certain natural killer cells in the body. CD-57 levels can indicate how active an infection is, and can often be a marker to show if treatment is working and how likely someone is to relapse.

If CD-57 levels are low it means that these NK cells are being used up by the immune system to fight Lyme. It is a great indicator of if you have an active infection and just how long standing it is. The lower the number is the longer your body has been fighting it. Most doctors, like mine, will keep an eye on this level to monitor things. When I diagnosed I tested quite low (I believe around 16), so my doctor knew I had been ill for a while (5 years to be exact), and he knew it would be something which would correlate as I progressed through treatment.

CD-57 levels are measured like this:
Below 60 is chronic Lyme stage. The lower the number the more active/worse it is.
60-100 is considered "normal" but still at risk.
Above 100 is normal & ideal, this range goes up to 300.
 *Many LLMD's say if you complete treatment & your levels are still below 60 you are considered more at risk to relapse.
You can access a link to a study done on the low CD57 levels in Chronic Lyme here.

My levels were crazy low to begin with, and I felt pretty crummy to match. After a year, not only do I feel better, but my levels have gone up to 45! That's still low, and it's not where I need to be, but honestly to see an improvement at all in clinical & statistical way is amazing. And it's something I had to look back a year to appreciate. I had to have the patience to see what I'm grateful for. 

You can check your CD-57 levels through your Doctor, or you can do it yourself with an "at home" test that you can get here. You simply go to a lab for the blood draw and they send it off for you. It's pretty fast and if you are curious this makes it possible without going through the hoops of an extra Doctors visit. 

This journey is long, and it's hard fought. But you can not give up. Not a week in, not a few months in, not even a few years in. It's easy to be consumed by the pain & have that blind your hope. Trust me, I hit my lowest point where I genuinely didn't know if I would make it every day. It was terrifying, and a place no one should ever go. But I want to stress that point greatly because if I can make it & keep fighting & improve, then so can anyone else. I've been at every stage of frustration; from lack of diagnosis, to uncertainty about treatment, to pain from Herxes, & wavering hope in progress. I can only say that if you have hit your lowest point then reach deep down and remind yourself that from here it WILL get better. You will prevail. You have to fully believe that, and take each day as it comes.

Xoxo,
Christina

Update 5/15/2016

I wanted to post an update on my CD57 levels since this post was originally written in 2013. Since then moved up to 75 in Spring of 2014, and as of now in Spring of 2016 its at 124. I hope this can be encouraging from anyone struggling to raise their levels up.

-Christina

39 Comments
Sandy
6/9/2013 01:38:27 pm

Congrats on your increased CD57! That is wonderful news!
Sandy

Reply
Becca
6/14/2013 04:36:50 am

Love seeing that you're able to look at the big picture of last year compared to this year--so glad to not only hear you say you see progress but also that you FEEL progress (and that you've been able to step outside that instant gratification mindset that so often plagues the majority of people, myself included!). :-)

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paula
10/26/2016 09:56:08 pm

Thanks for the CD 57 info...I have been in treatment for 1.5 years and finally had this test done recently for the first time. My results were at 47 so I imagine I was somewhere where you first were when I first diagnosed. I am glad to hear you are doing so well, gives me hope!

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Sabrina Omar
10/31/2016 02:41:23 pm

AwSOME!! SO HAPPY FOR YOU AND YOUR PROGRESS

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Laura
10/12/2018 09:36:16 am

How did u boost ur cd57 cells please? What treatment? I’ve just had mine back and there 30 so really need to boost mine. Thanks xx

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Natalie Gary
11/28/2018 10:21:17 am

Can someone tell me how they helped boost their cd57?? Mine is super low at 19

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Susan Parsley
11/29/2018 01:10:19 pm

I would like to know as well how you boosted your level. My level has been going down steadily with treatment.

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Brooke
12/30/2018 12:49:43 am

This is very encouraging!! Has anyone had their CD57 go down after treatment? Before treatment when I was diagnosed my CD57 was 28, after a 10 months of antibiotics and herbal treatments I got to 30 and now 1 year later it is 25. I am discouraged to say the least.

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MIchelle
3/4/2019 05:42:15 pm

My CD57 was 61 the first time it was tested which was partially into lyme treatment, Went up to 105 six months later, Now, 10 months after that, it's down to 81. Not sure what's going on.

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Amy
6/22/2019 01:57:37 am

Hi Christina. I got my CD 57 Flow Cytometry results back and my level was 24 and marked/flagged by the Lab as abnormal. My first Lyme test which I think was Western blot showed negative...still not sure if it was the full blot assay or not but getting mixed answers on route for healing to go antibiotics or not? I'm experiencing aches/pains joint/muscles twitches, fatigue , etc.

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Christina
6/30/2019 02:51:22 pm

Hi Amy! I would recommend you get some other testing, as Western Blot can often be falsely negative. If you can find a Lyme literate doctor, they could help you. But if you can’t, and you need to advocate for yourself then I recommend tests which use DNA sequencing, because that searches for the DNA of the bacteria via sequencing and is far more accurate. It’s also possible that you have other co infections that are creating the symptoms and suppressing your immune system, so DNA sequencing can be useful to pin down exactly what you have going on. Many people like DNA Connextions, but I haven’t used them personally so I can’t speak to it. I used Fry Labs, and found it very useful. Either way, further testing would help you pin down what infectious disease is causing your pain

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Beth
9/6/2019 10:10:17 am

So my CD 57 is low but the numbers aren’t like what you described above mine simply say normal is between 1%-4% and that I am below 1% and not on all of them just three. I also just tested positive for IGG deficiency. All my lyme tests even the super expensive ones are negative, but I was exposed to mold for a long time. Is there a time possibility my issue is not lyme?

Reply
Christina
9/23/2019 09:38:11 pm

Hi Beth! It seems you didn’t have the correct CD57 level measured. The test you would need is CD57 Absolute. What you received was the percent. That won’t be as helpful to see where you fall on the spectrum. In my post I do link to the correct blood test you can order and send in from home without a Doc if you wanted to check that as well!

Reply
PJ
12/10/2019 12:28:06 am

Hi. My result was 0.041. It came back as normal. Would my result be considered 41 ? Thank you

Reply
Christina
1/27/2020 01:40:18 am

PJ
It seems you didn’t have the correct CD57 level measured. The test you would need is CD57 Absolute. What you received was the percent. That won’t be as helpful to see where you fall on the spectrum. If you check the post I do link to the exact correct test you need if you would like a reference to take to your Doctor.

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Kate
12/31/2019 03:08:43 am

Hi..so I’ve been ‘in treatment’ for two 1/2 years and my cd57 have dropped from 19 to 11 to 9. What on earth can I do to help raise them?! And on another note... how on earth do you manage to stay a float financially?! I worked for myself so sadly..as work dropped off because I became ill... so did money. I’m virtually broke and can’t afford testing. Like this cis regular docs don’t rest this and private tests really expensive.

Reply
Christina
1/27/2020 01:42:55 am

Kate,
I've heard a handful of people say that during treatment (depending on what kind of treatment you're doing), can temporarily cause the CD57 levels to drop. I don't have too much info or research to add to that, just that people have emailed me to say that. I will tell you that the only one person who offered a solution was one lady who said that she used Moringa to boost her immune system specifically for the purposes of CD57. I haven't tried that, but there is some info out there on Moringaand the immune system CD57. I wish I could offer more advice. I know how painfully draining this disease is, I am so so sorry

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Steph
1/3/2020 03:50:59 pm

Congratulations on your results. I've been going through Lyme treatment the last 7 months after 3 years, 20 doctors and no diagnosis. Went to a holistic practitioner and treatment has been incredible. My current CD57 number is 70.

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Christina
1/27/2020 01:43:26 am

I'm so glad that you finally got some answers and are on the path to healing!

Reply
Heather
12/10/2021 10:16:41 pm

Hi Steph..I was wondering if you would share what treatment you went through for your Lyme disease?

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Rose Kluh
3/9/2020 12:46:46 am

I cannot find any Lyme literate doctors in my area. I live in Washington state. Any suggestions?

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Christina
3/10/2020 12:46:40 am

I would recommend using the physician finder on ilads.org they are very helpful!

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Kristin Wolf
3/13/2021 05:27:35 pm

Check out Dr. Marty Ross.

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Brian
4/14/2020 01:01:28 pm

I got my Cd57 test done in march 2019.My reading at the time was 77.i was experiencing all the typical lyme symptoms. I have not yet undergone another test.The normal range in the test was 100 to 360.I have being receiving antibiotics since September. I still have an array of symptoms. I am going to get tested for coinfections soon. Is the Cd57 an accurate test for diagnosing lymes?

Reply
Christina
4/15/2020 12:03:32 pm

Hi Brian! It's often used in tandem with other tests and looking at your symptoms. But yes yours is definitely low. Have you had any other Lyme testing done? You can also email me too if you'd like to chat! cskova01@ladyoflyme.com

Reply
Brian
4/16/2020 06:08:00 pm

Hi Christina yes I received lymes tests in Germany. I got elispot done. The test positive was more than 3.I had 5 in both tests.I wasn't tested for Co infections at the time but hope to do so over the next few weeks.

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Brian
4/16/2020 06:20:50 pm

The main symptoms I have are chills at times, blocked ear feeling, twitching calf muscles. I also have a lump in throat feeling since Christmas. I find myself short of breath and my sternum/chest is quite sore. Just wondering has anyone else experienced symptoms like these throat and shortness of breath symptoms?

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Michelle
4/16/2020 06:37:24 pm

You should get checked for Babesia, a lyme coinfection that causes "air hunger." I went to ER multiple times feeling like I couldn't breathe when I had it.

But you should also get checked for Covid 19.

Lucille
5/2/2020 10:13:42 pm

Thank you for sharing your CD-57 experience and stories, everyone. Much appreciated. My son started at 17 and is at 43, after 4 months of treatment, but I wasn't sure what to make of this, so this page was very helpful for me to gain some context and expectations with these numbers. Wishing everyone the best.

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Vicky Hamlin
7/9/2020 06:28:50 pm

Hi Christina, Thank you for sharing this, reading it definitely gives me some hope and yours is the type of story I need to hear about. I've been very poorly and housebound since Autumn 2016. I got diagnosed with Lyme Disease and multiple Coinfections in March this year and my CD-57 level is 2. My Lyme Dr said I am 'in my boots' with this result which explains how unwell I feel! I'm only at the start of my treatment journey and am slowly starting to accept how long this process is going to be. But to hear it does get better definitely helps so thank you! I hope your marker has stayed at a better level now and more importantly you continue to feel well - or as well as you can do with Lyme! Vix x

Reply
Annalisa link
10/5/2020 09:35:28 pm

Hello! Thank you so much for posting this :) I have mold toxicity and have symptoms that could indicate Lyme disease as well like burning sensations and particular headaches on the back of my head, trouble detoxing, etc. Anyway, I'm on my journey of healing and am looking to rule out lyme so I know what to focus on in my treatment plan. When I clicked on CD-57 on the True Health Labs site, it says restricted access now and to call a particular number. Do you know why?

~Annalisa

Reply
Christina
10/9/2020 03:05:57 pm

Hi there! Hmm so odd, I’m not sure. It may be due to COVID and there being more restriction and changes on labs or who can process which test. That’s my guess at least! If it’s not up and running soon I would definitely give them a call because they can help sort it out for you!

Reply
Annalisa link
10/9/2020 03:17:16 pm

Hi Christina! Thank you :) My doctor is actually going to order the test, so it worked out.

sam
11/22/2020 11:15:45 am

I have cfs . My cd 57 came way below minumum levels. Western blot negative and other test was mildly positive which I wasnt convinced of the result. After 300 different blood test and 40 doctors in 15 years , I think the liver is not functioning properly. Please ckeck your Atp levels if you have fatigue - mitochondria problems.UNLESS we have definite proof that we had lyme, it is not wise to blame our health problems on lyme , and we should look for some other conditions.

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MIichelle
11/22/2020 11:29:59 am

It's not mutually exclusive. I did get my mitochondria and atp lab tested (at an English lab-- not aware of it being available in US) and had damaged mitochondria and insufficient ATP. But urine PCR test also found lyme, Babesia, Bartonella, and Erlichia, and blood tests showed mold toxicity. Addressing all of those have helped my mitochondria to start repairing. Because having infections and toxicities can be what damages your mitochondria and, if so, you can't heal them without addressing the root causes.

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sam
3/15/2021 03:45:48 am

In my case by using cortison cream, it screwed my nk levels also my blood got thicker hemoglobulin maxed out Hc was also up, doctors thought it was polycthemi vera... Always check side effects of anything you use before blaming on Rare diseases which is widely used money rip off by tricky practisers. Also use of Asthma inhalers and any immune suppressors would effect our immunity Markers..

Reply
Rachel Miller
3/23/2021 08:42:34 pm

Hi,
Ive been sick on and off for several years but the last 16 months have been debilitating both mentally and physically.
My results just came in as
CD57 CD3 LYMPH % < 1
CD57 CD3 CD8 CELL count <20
CD57 CD3 CD8 WBC % <1
CD57 CD3 CD8 Lymph % < 1

I dont see my dr for a couple of weeks. Any idea what these numbers mean?

Reply
Leslie Fontenot
3/18/2022 11:25:34 am

I have been struggling with lyme like symptoms for the past five years. My CD57 was 75 in 2018 and 36 in 2021. I began daily B12 sublingual 1000 µg treatments in august2021and as of March 2022 my CD 57 count is 156. The only other thing I did in that timeframe was take a round of Doxycycline for four weeks, but it was incredibly hard on my body. I suggest trying B12 sublingual methylated in the morning on an empty stomach but I do recommend testing levels first although blood test or NOT always reliable. I had to use a spectra cell test for accurate results.

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Peytn
5/18/2022 07:01:53 pm

I was hoping to find some information here about high levels. My Abs.CD8-CD57+lymphs is 429 range 60-360. What does this mean?

I tested positive for Lyme through quest. Been sick 2 years.

Reply



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