4451049 tn?1387153437

So confused

It's just so complex.  If TBIs are present, and my higher immune system is completely shot for whatever reason.  Then does it make sense that all these labs the Drs rely upon may be completely normal because my body is not trying to fight the infection?  I won't have any inflammation because, well thats an immune response to infection.  WBC's and IgGs would be normal because wouldn't that be my body's response to infection too?  IGenex would probably be negative too as it relies on the body's response to infection.  Understand where I'm getting at here?

Anyone?  I'd really appreciate any thoughts!

20 Responses
Avatar universal
From the website LymeDiseaseNeogen, an explanation of why some docs view CD57 as useful, though not definitive:

"CD 57 is a test that can help your doctor look at certain components of your immune system which can be affected by lyme disease. It can be used to determine if you are suffering from chronic lyme disease despite testing negative in all the other tests.

"Certain white blood cells called lymphocytes, found in the blood, tissues and lymphoid organs, target
 antigens (foreign proteins) in different ways. The main lymphocyte 
types are B-cells, T-cells and natural killer (NK) cells. B-cells produce antibodies that are stimulated by infection or vaccination.

cells and NK cells, on the other hand, are the “destroyers” in
 the immune system and they attack and kill tumorous cells or cells infected with viruses. NK cells have their own specific surface markers.

"The most common
 marker is CD56. The percentage of CD56 NK cells is often measured in
 patients with chronic diseases as a marker of immune status: the 
lower the CD56 level, the weaker the immune system.

"A smaller population of NK cells are CD57.

"A low CD57 number has been associated with chronic Lyme disease according to Drs. Stricker and Winger. The reason the CD 57 NK cells are low in Lyme disease patients remains unclear, however it is 
important to note that many chronic disease states that are often confused
 with chronic Lyme disease are not
 associated with low CD57 NK counts. These include diseases such as MS, systemic lupus, rheumatoid arthritis.

"Usually the CD57 NK level increases as treatment progresses
and health is regained, hence it is a good indicator of improvement in the disease process and treatment success.

"CD57+ markers can also be seen on other kinds of cells, including
 T-cells, therefore it is important to distinguish between CD57+ T-cells and
 CD57+ NK cells.

 laboratories that do the CD57 panel are actually looking
 at CD57 T-cells rather than CD57 NK cells, which are the cells of
interest in chronic Lyme disease.

"When Drs Stricker and Winger discovered that CD57 NK cells are low
 in chronic Lyme patients and tend to increase with patients’ clinical 
improvement, it proved to be a major tool for Doctors treating lyme patients that allowed them to follow the progression of the patients condition.

"Be aware however that the CD57 test result is just another number;
 far more important is the patient’s clinical status and the overall condition of the patient should be assessed as a whole rather than relying on one marker or test alone. Unfortunately too many Doctors tend to ignore this advice and blindly follow the test results only."
Avatar universal
"It's just so complex. "

Yes! And that's probably why you aren't getting many answers. LOL

Can you restate your question(s)

But because it's Lyme that's so complex is a partial answer to your questions.

I could direct you to some articles that might help you. (I don't know if you've read them or not)

Tom Grier ---- The Complexities of Lyme Disease.

I can't post the url because of the rules of MedHelp but google The Complexities of Lyme Disease and pick the one that has LymeNetEurope as a banner.

That article may answer many of your questions. (You might also read his other articles while you're there). That's of course you've already read them and are still confused. :)

1763947 tn?1334055319
Ephedra, I think the best thing would be to stop thinking about inflammation because some people show it in their blood and others don't.

Lyme is so complex, therefore not one protocol is there to fix all of us.
Can you tell us your symptoms? If they seem Lyme like then a good LLMD doesn't need a positive test to treat you.

Please don't forget the new law passed in Va, just because your Lyme tests are negative, your doctor must tell you that you could still have Lyme. That is a huge step. Hopefully other states will pass the same law.

I was bit over 20 years ago but it took 18 years for all my blood tests to be crazy. Before that all my blood test were normal even when I had a constant low grade fever for YEARS!

It is very frustrating and confusing. You are not alone.
Avatar universal
During all my years of road kill symptoms and tests upon tests---- my sed rate NEVER showed I had inflammation!

But I still got treated and I did get better.
4451049 tn?1387153437
Thanks for your answers!

I didn't get better on abx for three months.  I felt bad the entire time I was on them.  That's what makes the situation so tough.  However, I did improve when I quit them.  So I'm not really sure what's up with that!    

I took a medication prior that not only suppresses the immune system and reduces inflammation, it somehow works to keep it that way for quite a while..  I don't want to get into all that.  But a lot of the side effects of this medication are the same symptoms of Lyme.  And it was during treatment with this medication that I began having prevalent issues.  Before that, there was a gradual decline in my health but I didn't really pick up on it.

If anything I think I may have been born with it, though I don't even know.  I never seen a tick or a bite, I'm just mainly going by symptoms and possibly alone.  

Drs never state what they are thinking, that's just so aggravating.  But yeah I have an extremely complex case.

The only thing we have to go on, is an extremely low CD57.  And we're not even sure if the medication may have caused that, although I don't see how it could have got it as low as it is.  Everything else, for the most part is normal.  

I really don't think I would test positive on an IGenex if I had one.  Another negative result isn't going to help anything!

I've always been healthy, can't even recall EVER having the flu.  And I know I'm healthy but I just don't feel good.  See what I'm saying?  Do you have to be sick to have Lyme?  Because I think my kids may been born with it but they seem completely healthy too.  I can see it in their actions, if you know what I mean.  One has ADD and the other one has a learning disability, but I know that doesn't necessarily mean they have Lyme..  

1763947 tn?1334055319
Your Lyme can be in remission for years as mine was. You could have felt worse with the abx because your were experiencing a herx. That is how I felt when I first started the abx, its a worsening of the symptoms because your body is trying to get rid of the toxins from killing off some bugs.
As I said above, find an LLMD who can rule Lyme out if it isn't Lyme but can treat you based on symptoms if it is.
Avatar universal
I would suggest that you see a doctor that is knowledgeable about Lyme disease, take the test from Igenex and go from there. (That of course means money and I can understand where finances can raise it's ugly head.)

When we're sick we often don't have the clarity of mind to 'diagnose' ourselves. That's why doctors are always told to have another doctor diagnose and treat them if they have a serious problem. (grin)

I was rarely sick before Lyme, led a  healthy lifestyle. Still got Lyme.

You're imagining things that you don't know are true such as saying :
"I really don't think I would test positive on an IGenex if I had one"

I did that a lot in the beginning-----

Read the link below and see if you recognize anything:

And, forget about that low CD57 ----I've explained that before on this site and won't bother the members again. It's a useless test.

4451049 tn?1387153437
Thanks for always being so helpful.

The LLMD that I am seeing didn't think it was a herx at all, since it basically lasted for the entire three months.  I'm thinking, what else could it be?  Well I had more heart related issues, and it just so happens that Zithromax has warnings out for that sort of thing.  But I had some unusual pain too.  I couldn't pinpoint a definite herx, although there were a few times I thought it could have been.  But it didn't last long.  Maybe a day.

LLMDs in my area are in such a short demand, that they don't know and don't care.  They have plenty of patients and plenty of money.  And they can't help but rely on lab test, if you know what I mean.

Yeah, my doctor will treat based on symptoms and make a clinical diagnoses based on response.  Like I said though, my response was kind of off.  

I keep bringing up the CD57, because that's the only thing that was way off.  I had the Dr do a CD56 though, just to see if it's low.  What's ya'lls thought on that one?  Think it can be low with Lyme?  I know they say ME, but Lyme??    
1763947 tn?1334055319
Thanks Jackie for that information. Good to see you back.
Avatar universal
A good way to figure out if you think the CD57 is a reliable test or not is to simply read all the patient's stories that had them, as I did. Well, maybe not ALL but certainly hundreds.:)

If about half the people say it reflected how they felt and what their disease was doing/progressing or regressing-----
And the other half say it didn't reflect on how they felt OR how their disease was progressing or regressing-----

Then I'd say that means the test can't be trusted to a degree of certainty needed for any test.

Personal experience? My CD 57 was always 'perfect' even when I was feeling my worst. It was still perfect while I was in my remission.

A friend, who had Lyme but felt fine had CD57 test scores near zero.

The tests were taken by  Dr. Stricker who devised the test. He had no comment about that disparity. :)

4451049 tn?1387153437
Thanks Jackie!

My doctor did a IgG subclass 1-4 to check my immune status and it came back fine.  So if my CD56 comes back low, then that would be more indicative of some sort of chronic disease?  
4451049 tn?1387153437
I understand that cave :)  I guess it just depends upon what the doctor thinks.  And they never state what they think, so I never really know.  I read somewhere that the CD57 count increases with age too, and I'm not that old.  Not real sure if thats true or not.  
1763947 tn?1334055319
Some Dr's believe in the test and others don't. I wouldn't rely solely on the test as a determining factor for Lyme.
4451049 tn?1387153437
I agree.  I think my Dr is under the impression that it's not Lyme.  
Avatar universal
I wasn't reading the earlier posts on this thread, but would like to circle back around to your first comment above:

"It's just so complex.  If TBIs are present, and my higher immune system is completely shot for whatever reason.  Then does it make sense that all these labs the Drs rely upon may be completely normal because my body is not trying to fight the infection?"

It can be, so I have read, because the human immune system is set up to fight an infection for a relatively short period of time, because most bacteria have a really short reproductive cycle, and it is when dividing and the bacterial cell wall is disrupted that abx can do their best work.  Lyme however has a relatively long reproductive cycle, so there are fewer opportunities for our immune systems to attack and wipe out the Lyme bacteria.  After a period of time that would usually allow complete killing of a 'regular' infection, the immune system shrugs and goes home because that's what usually works.

Ah, but Lyme doesn't play by those rules, and can persist both due its long reproductive time and its ability to form biofilms to hide in.  

You also say;  "IGenex would probably be negative too as it relies on the body's response to infection."  Actually, IgeneX testing looks not for for the immune system's reaction, but for the DNA of Lyme bacteria, as I understand it.  That's the genius and importance of IgeneX testing:  it looks for *direct* evidence of Lyme bacteria rather than the indirect approach of looking for your immune system's reaction to Lyme bacteria .  The immune system will give up and quit after a while, because that is how it has developed over millennia, based on the short life cycle of most bacteria -- but Lyme is breaking those rules.

The docs who don't use IGeneX do not seem to understand this aspect of Lyme, all the more reason to see an LLMD.

My own LLMD tested me with both IGeneX and standard tests, and all of them came back positive.  I remember he was very impressed that my immune system was still up and fighting at that point.  Everybody's different, so the more tests that come at the ailment from different angles, the more data points available to figure out what's going on.

If you are having trouble getting a diagnosis, you might want to see another doc who will test with IGeneX just to be sure you don't have Lyme.  Also there are other tickborne ailments that need different testing from Lyme, and it takes a subtle doc to figure out what those might be based on your symptoms.
4451049 tn?1387153437
Wow thanks Jackie!  

I didn't think the western blot looks for the Lyme DNA, only the PCR.  My doctor uses the IGenex western blot, which I believe relies on your bodys production of antibodies to the infection.  Am I wrong?  As I've mentioned, I took a fairly potent immunosuppressant prior to any obvious symptoms and so I'm not really sure if my body is fighting the infection and thus producing enough antibodies to aid a positive result.

My symptoms are hit and miss too Jackie.  It's hard to think there isn't something else involved that's messing everything up.  But I don't expect doctors to have time to figure it out, so I do my best.  Symptoms are hit and miss, response to abx is hit and miss, labs are almost perfect other than this CD57 test.  Doctor seems clueless, so I'm like giving orders to the doctor on what test I need done.  The muscle twitches are the main clue towards Lyme.  I can't say I hurt much.  It's mainly fatigue, short term memory, concentration, slowed thinking, ect The weight loss is weird, I'm dropping weight by doing absolutely nothing.  I've always had to work hard to lose weight.  

I'm not really sure what the doctor would think of a negative result - probably that I didn't have Lyme.  

Avatar universal
Oops, need to clarify --

You responded:  "I didn't think the western blot looks for the Lyme DNA, only the PCR."  You are correct.  My doc used IGeneX *only* for PCR testing, and sent me to LabCorp for everything else like western blot.  So I forget it's not like that for everyone.

So to be clearer;

-- PCR testing looks for Lyme DNA in your blood (a direct test)

-- Western blot looks for your immune system reaction to the presence of Lyme bacteria (an indirect test)

I think of it like the cops either finding a burglar IN your house (PCR) or finding a burglar's footprints in the flower bed as he departed (W.blot)

Avatar universal
You might consider the culture test for Lyme.  It could reveal that you have reproducing spirochetes even if you don't show any antibodies.  You have to be off antibiotics for a month before doing the test.

Have you tried any antibiotics for Bartonella yet?  I've learned a lot more about it lately. It has a lot of overlap with Lyme symptoms and can also be chronic and make you miserable.  Blood tests for Bartonella are often false negative, too, so you need a doc who's familiar with it and willing to make a clinical diagnosis.  It can cause rheumatological, neuro, and/or GI symptoms.  It can also cause neuropsychiatric symptoms like anxiety, mood swings, irritability, paranoia, etc.

I seem to recall that Bartonella can also be transferred to a fetus in utero.

Sorry if I'm asking questions you've already answered before or suggesting things you've already tried!   ...Have you been checked out for parasitic infections?  I wonder about Toxoplasmosis, Babesia, and other protozoal infections that can be insidious and nasty. Usually they are opportunistic, infecting only those in poor health.  But more and more, they're being found in the general population, showing that they don't need a sick host to get established. Doctors aren't really aware of these illnesses and don't recognize them.

I'll also bet you have multiple things going on.  Modern medicine doesn't seem to understand complex multi-system illnesses.  If you haven't already, you might try eliminating as many toxins from your environment as possible... chemicals, mold, pesticides, herbicides, fungicides, and even things suspected but not proven toxic, such as GMOs.  You could have unknown food sensitivities or allergies contributing to your symptoms, even Celiac.

Some doctors are talking about EMFs as a barrier to wellness for some people.  They recommend staying away from electronic transmitting equipment (routers, cell phones, cordless phones, etc.) as much as possible, keeping all of them out of your bedroom where you sleep.  Some people get better once they remove these items or shield the rooms where they spend the most time.  The science isn't there yet on this issue, but there are a number of people in my area complaining about getting sick after SmartMeters were installed at their house.  The anecdotal stories really add up.

Sigh.  I know it seems like throwing a lot of stuff at the wall and seeing what sticks.  But I can relate to the frustration of not knowing what to do next.  For such patients, a trial and error approach seems to be the only path.
4451049 tn?1387153437
Thanks a lot!  My Dr uses the western blot, so I don't know if she'd be up to another test or not.  Yes I have wondered about other possible infections you speak of, but it's just one of those things I'd expect a Dr know about and maybe test for.  There's just so many out there.  I don't understand  why I have to tell the Dr what to test for, I hate asking for things.  I guess my labs are completely normal so that rules out a lot of things in the Drs eyes.  Im sure the Dr is secretly building a psych case, but whatever.  I AM a psych case, but I also have enough sense to draw the line between reality and not.  Plus there are little clues that the Dr can see that should speak louder than words.

Everything you mention pertaining to Bartonella matches entirely.  I was suppose to begin a Bartonella treatment and it kinda fell through.  So far, I've been really sensitive to typical Lyme treatment.  I've noticed I'm sensitive to a lot of things and medications, so maybe that's why she's apprehensive.  I suppose I could always order my own meds for Bartonella though.    

I'm not exposed to a lot of EMFs.  So I don't think that'd be an issue.

I did order the 23andme genetic testing, so that should be interesting.  I've just been very slowly declining for years despite a fairly healthy lifestyle.  The medication that I took just kind of kicked everything into overdrive.
Avatar universal

Igenex PCR looks for the DNA (or bits of DNA) in the blood of submitted samples---- free. I assume to collect data from thousands of different patients.

That's a smart move and often the first move for science--- collecting data.
I hope that something will come of that eventually, for all of us.

But a PCR test (for DNA) has some limitations:

A positive will be a positive. Period.

A negative will ONLY mean that THAT SAMPLE of blood didn't contain and DNA of the spirochete.

The next sample (blood drawn), if there is one, from the same patient MAY contain some DNA in the blood.

Since Igenex will have those test results from all the people who have their blood tested there-----some of us multiple times-----and sometimes the same person may show PCA positive when they were negative before.

There's bound to be some statistical value there. And I thank Igenex for doing that.
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