What else causes low CD57?

[Todd36]

it seems like there are a lot of people with questions related to CD57.  It would be nice to have a doctor give an overview of the marker, eh?

anyway, i got my CD57 back today and I clocked in at 40 but I'm still waiting on western blot.  My dr said that it wasn't that low but it was lower than average.  The scientific literature says 60-360 is the normal range.  My white blood cell count is normal, EMG and NCS are normal, brain and C-spine MRI normal, and neurological exams are normal, but I'm still dealing with strange, diffuse pain and muscle twitching with the recent development of eye and throat pressure.

Besides lyme disease, what else does a low CD57 point to?  I know it can be low for HIV but that's out of the quesiton for me as I've been married for 10, and I had an HIV test before I was married and I haven't have blood transfusion.  SO...what else does a supressed CD57 indicate?  High CD57 is indicative of cancer, but low????

your input is appreciated.

Thanks,
Todd

[helpcindye]

I was diagnosed with Lyme disease 4 years ago. My cd57 came back 23. I just had it checked 2 days ago. Now it is 15. Why is it going down? I started with very strong antibiotics for 2 1/2yeats. Then being treated with homeopathic dr for 11/2 years.

[CraiginWales]

Co infections. Off the top of my head mycoplasma & chlamydia Pneumoniae, I think Babesia too. Babesia if positive should always be treated first as all the other infections can live inside it. I’m 6 weeks in on Buhner’s herbal protocol for Ch. Pn & Myco & seeing some really encouraging improvements

[JackieCalifornia]

About fibromyalgia:  some MDs lump together everyone who has a similar bunch of symptoms that the docs don't know where to go with the situation.  In this context, 'fibro' references the 'fibers' in the body, such as muscle or other body tissue, and 'myalgia' means pain.  

Therefore you are diagnosed as having 'painful tissue'  ........  which means, 'We don't know why you have the symptoms you have, but since your muscles and other tissues are painful in various ways, we will call your ailment ... Painful Tissue Disease!  But to make it sound fancier, we'll use Greek words."

I would find a Lyme specialist for a work up to see if I had Lyme.  There is a serious split in the medical community about Lyme disease, and the docs who shrug and say your painful tissue is caused by a disease called Painful Tissues is another way of saying "We don't know."

There are docs who DO know how to deal with Lyme disease, and I would find one of them for a consultation.  ILADS (International Lyme and Associated Lyme Diseases Society) is the best known group for MDs who focus on Lyme disease and its related issues.  You can find ILADS on the internet, and they can refer you to one of their member docs near you.

Please let us know how we can help -- you might also want to watch the documentary 'Under Our Skin' and read 'Cure Unknown' if you would like to know more about this serious split in the medical community, so that you can chart your own course in dealing with Lyme.

I am now more than a half dozen years past my treatment by an ILADS-member MD who diagnosed and treated me for about a year (it's not a quick fix for specific reasons I won't go into here), and it was worth every minute to be well again.  Please let us know how we can help, and also how you do.  Best wishes!

[JackieCalifornia]

A lot can change in four years, and over time the CD57 test has (from what I read) become less useful because there are other tests more accurate and more reliable.  I have not done a great deal of reading on CD57 except to note that it is not looked on as it used to be.  

Why are your levels going down?  I don't know, but ask your docs about how reliable CD57 is or is not, given progress in other test approaches.

[eCatz]

What other tests do they use now instead of cd57 to gauge the strength of your immune system?

[thegemprincess]

great question.  

[JackieCalifornia]

Don't give up in figuring out what you might have, so you can get rid of it!  Docs are very different in the way they diagnose and treat something relatively new like Lyme, so do keep trying to figure out what might be ailing you.  It might not be Lyme, but many docs don't know much about Lyme at all, and they don't know their limitations.

It took me TWENTY docs before Doc #20 ran a Lyme test, which came back positive ... but Doc #20 said I "could not possibly" have Lyme disease -- !!  Whaaat???  I took the test results to a Lyme specialist and got properly diagnosed and treated, and I am fine today.  Don't give up!  Let us know how we can help, okay?

All good wishes to you --

[eCatz]

I agree. In 2007 I had a flare, was hospitalized and the infectious disease doctor was sure that I had Lyme disease, but the test came up negative. (I later learned that if you have chronic Lyme you don't have the antibodies the test is looking for.)

Unfortunately,once the test was negative there was no follow up. Symptoms grew progressively worse, I was tested and treated for Lyme but grew progressively worse. Six yrs later I was unable to work. 3 1/2 years later my doctor finally tested me for Bart and I got a positive test! I wasn't crazy after all. Be persistent!

[Jazzmatazz2]

My CD57 is 10. I have gone four years without a DX. So frustrated and sick.

[JackieCalifornia]

"the medical proffresion shoulkd develope a way of testing not relying on antibodies"

IGeneX Laboratories in the US has exactly that kind of test:  instead of looking in your blood for antibodies to Lyme, the IGeneX test looks for Lyme DNA littered about in your blood, left over from the Lyme bacteria.  

The older Western blot and ELISA blood tests do not work as well as the IGeneX test because the Lyme bacteria have the ability to suppress the human immune system.  As a result, the Wblot/ELISA tests often find no evidence of Lyme in your blood, because Lyme keeps the immune system from producing antibodies.  Result:  low or no antibodies, and a nonLyme specialist would call that negative, meaning no, you don't have Lyme since your immune system is not reacting to it.

IGeneX Labs are in Palo Alto, California, and they can (as I recall) ship test kits to MDs and labs to use in diagnosing or ruling out Lyme.  They have a website.  Just search online for IGENEX.

[corky6969]

Hello Todd.
My name is elaine how are you todd?
Please can you send the CD57 ADD TO ME
***@****

I live in scotland, I have 4  past positive western blott tests for borrelia burgorferi in 2008 2009 2010. I got infected in 2006, i had the circulrar rash, flue lik,e illness. A gp asked if i saw a tick but did not treat me ,.i was gave wrong result by both gps and infectious disease Nhs concultant, They told me negative but results were positve,My mobility declinned over time I am now in a wheelchair at 48years old. When my positves were found by accident by a neurologist digging in my medical records. She caled to tell me.By this point id had it 4 years.THe infectios disease doctor,told me THERE IS NO WAY OF KNOWING IF LYMES CAUSED YOUR ILLNESS.AS THERE IS NO DIAGNOSTIC TEST. WHAT A JOKE.
He gave me trial 1 month antibiotics retested me. i was still [positove . i was sent packing. with NO DIAGNOSIS
I Have ran a coinfection test privetly and i show positive Anaplasma, l be running more.No Nhs doctor ran coinfection tests on me .
In the uk i can not get a doctor to give longterm antibiotics. I had a new test for lyme a immunoblott showed negative. But i have 4 past western blott.Iv read heard from ilads its because im in year 9 now im not giving a immune rersponce.
I need a uptodate lymes test but as all need antibodies iv got no chance. Ilads asked me why retest you have lymes disease you had the rash and positve bloods
Well i tried to get a diagnosis based on past positves, i was given POSTLYMES DISEASE SYNDROM. I need more treatment 1 month 4 years to late is not good enough. I am in bed more hours in day than up with a  exhausted spaced out zombie brain. Usual chronic muscle jpint pain,sensory pasasia. Muscle weakness in arms legs,irb , wonky heart rtyhm.host of other syptoms.
i will run CD57 AT ARMINLABS.COM.  HE is very nice german man always answers email questions. ilads receogmended him to me,, Realy the medical proffresion shoulkd develope a way of testing not relying on antibodies. Test that can see the disease in the microscope. to save the horrible merrygoround we lymes are all on, i am really fed up. I am soory if emails a mess hardly see with exhaustion. usual lighr sound heat is unbearable.  takr care

kind regards

elaine

[CraiginWales]

Do a full stealth pathogen panel if you can afford it with Armin. My latest showed Borrelia is still in remission , positive for Mycoplasma & Chlamydia Pneumoniae. I’m doing Buhner’s herbal protocol for both infections (12 months total) & only 5 weeks in I’m seeing really encouraging improvements. Don’t waste your time & energy with the NHS, been there, done that; got me nowhere. Find a sympathetic, understanding GP but remember they must stick to NICE guidelines. He’s been helpful in many other ways eg. When I did the Disulfiram protocol for Borrelia (group on FB), he did monthly liver function tests for non existent pain. Good luck

[JackieCalifornia]

Thanks for posting that quote.  I suspect there is a role for CD57 to play in diagnosis and perhaps tracking change (feeling better or feeling the same or feeling worse) as the patient progresses, but the earlier hopes some docs had that there is a strong and direct correlation between CD57 measurement on the one hand and the patient's immune reactions on the other hand seems to have faded somewhat.  ...  

The quote you post above suggests that CD57 may provide useful data, but is not the last word.  Let's all keep watch on developments and share them here.  Thanks again for the post --  

[GaPeachWoodstock]

I saw the following on the Igenex web site, so I thought that I would share it:  
"Therefore, for patients with a low CD57 count, Lyme disease and C.
pneumoniae infection should be included in differential diagnosis.
C. pneumoniae can cause acute respiratory disease, but it can also
persist in some patients with chronic respiratory conditions and
cardiovascular disease.

[JackieCalifornia]

Welcome to the Lyme page -- hope your treatment helps -- keep us posted!

[Seahorse0707]

Low CD57 and also be a sign of mold illness.  Please see survivingmold.com.  I am dealing with low CD57, high TGFB1 and C4a, and low MSH.  I also have high counts of mycoplasma and Epstein Barr counts.  My Dr. is treating me for mold.  I start the cholestyramine protocol tomorrow. Hope it works!  Been ill for 20 years.  

[SnapCracklePopkc]

Mine just came back at 8. It was 16 or 17 when I was sick, at 19 in December and plummettedto 8 after wisdom tooth extraction Im still functioning but running very very low.

[Atheana]

Hi Ginak,
Stay strong. It probably is Lyme and Co.

You will get better.
Atheana

[JackieCalifornia]

May I ask what your diagnosis is and what antibiotics you are taking?  Five years seems like a loooong time.

[barisings]

My CD57 was just 6 so your husband isn't at the bottoms of the barrel.  I wen t undiagnosed for at least 10 years and am on my 5th year of antibiotics.  

[JackieCalifornia]

Welcome to MedHelp --

It sounds like the antibiotics were working -- do you or your doc not want to continue treating?  Which antibiotics and for how long are critical to effective treatment.  If you would like to share your treatment with us, we'd be glad to comment from our experiences.  (I was treated successfully with antibiotics only.)

If you have decided to go herbal, others here can share with you their approaches.  There is not one way only, and it depends on your doc's preferences and possibly what co-infections you have along with Lyme.

To get the best notice for your inquiry, you may consider reposting your message as a completely new post instead of putting it at the bottom of a fairly old message (above here).  Just copy and paste into a new message what you've already written in your post I am replying to, and title the new message something like "What herbal and supplement treatment to use without antibiotics?"

[InfoNeeded002]

In my lyme research I find that there are many recommendations for herbals and supplements that have improved lyme symptoms, but no one ever posts how much they took for how long?  I have been dealing with lyme for 2.5 years and was in remission after iv abx for 4 weeks...  Stopped the oral abx in December then started to get symptoms again by april/may.  one band is back instead of the 2.  I still have some fatigue and pain in my feet.  I move like i'm 90 but attribute it to lack of consistent exercise since this started.  Any information on a specific diet/ herbals/supplements would be appreciated.

[JackieCalifornia]

(And you might title a new thread, 'What else causes low CD57 -- Part 2', so people will know to go searching if they want to read the first 100 (!) comments.  Whew!)

[JackieCalifornia]

Jenna,

You might want to also start a new thread so this new post is sure to be noticed.  You could say that a while back there was a long thread called 'What else causes low CD57', and this new thread is Part 2, so people can go back and read the earlier conversations for more background.  That way you reach everybody.  Just a thought.  (Your botox question is a good one.)

[Jenna522]

I don't know if anyone is still following this thread but if so, to anyone that had a low count on a CD57 test -- did you ever have Botox injections (or any other brand name for botulinum type A,  like Dysport) for any reason whether medical or cosmetic prior to becoming ill?

[jacali]

Very interesting that you ask that question.  I was perfectly healthy prior to having the injections, came down with flu symptoms and then got fibromyalgia 2 months later.

[JackieCalifornia]

Welcome to MedHelp Lyme --

I am sorry to learn of your son's illness.  

I have not read much about CD57 lately, and it is my impression that CD57 has not been has useful as hoped in diagnosing and tracking the recovery from Lyme disease.  Some physicians will still test for it, I think in order to gather as much information as possible, but it is apparently not the "always reliable" indicator it was hoped for.

Some physicians will follow a purely herbal treatment approach, as your son seems to be using, but other physicians in the US prefer to use antibiotic medicine.  My physician treated me with antibiotics only, and it worked well.  

I had Lyme and also babesiosis.  Has your son been tested for other infections often carried by the Lyme ticks (in addition to Lyme)?  They often require different medication than Lyme does.

Best wishes to your family -- please let us know how we can help.

[josalberts1961]

This a very old post. I've actually discovered this forum as I just received the CD57 value of my son who has been diagnosed with Lyme (and co-infections) three times in a row over the last 15 months.

Somebody advised me to check his CD57 levels. They just came back 209 !
No question that he has Lyme and for over 4 months now he is on a protocol of AB, Samento / Banderol / Cumanda & Reishi.......

The test was taken about two weeks into the above protocol, but he was already using Reishi - rather high level. Currently I'm reaching out to people with Lyme and low CD57 to try Reishi and see if it has a similar impact on them.

I have no other explanation than Reishi for this extremely highly CD57 level. The boy has been really, really sick for over 15 months and even unable to attend school at all for almost 4 months (19 year old now)

[JackieCalifornia]

I think how you treat an illness and what you treat an illness with makes a difference.  Different bacteria and viruses have different weaknesses that allow specific medication or herbs or radiation or whatever to kill the invader.  The human immune system is not born with all the antibodies needed to kill all the bacteria and viruses in the world, whether existing now or evolving in the future (like AIDS did).  The immune system can learn to fight particular infections, but it is not born with those specific antibodies in place.

[Kateaaaa]

I think it is a pea soup.  There is an article that postulates  how all of these chronic diseases like CFS, Fibro, Lyme, MS, Parkinson's, etc actually have multiple overlapping symptoms and none have a single definitive test.   Typically one or more pathogens are implicated but not consistently the same pathogens.  The article postulates that each disease is caused by multiple pathogens that have turned off the immune system as a survival mechanism.  This invites in still more pathogens.  The symptoms in each condition differ slightly based on the individual's particular pea soup recipe, which includes not just exposure to specific germs but also genetics and environment (toxins, physical trauma and surgery, nutrition, emotional stress, etc).  This makes sense to me.  The solution is in repairing our immune systems so our body can fight the invaders once and for all.  It doesn't matter what your diagnosis is ---if you have been ill for 20 years, is almost certainly a dysfunction of your immune system, or you would be over it by now.  The article is "immunostimulation in the era of the metagenome".
http://mpkb.org/home/publications/proal_molecular_2011

I have now been diagnosed with CFS, Fibro, and now Lyme.  They all feel the same to me.  :). Hopefully treating one treats them all.