Over the year I have had my blog one of the most frequently asked questions I get is ” How did doctors finally diagnose your Lyme after years of being misdiagnosed?”. I like many had years of mysterious symptoms that over forty-five doctors over a fifteen-year time span missed the connection on. I as well have many of the co-infections that come along with Lyme, six out of the eleven to be exact. It is believed that I have had Lyme since I was seventeen years old and had my first outbreak of Epstein-Barr Virus (mono) and began my journey with being constantly sick with multiple illnesses that a normal healthy teenager doesn’t deal with!
Fast forward 15 years and my youngest son were sick with the same mysterious symptoms that had plagued me for years and was hospitalized for over 12 weeks with no answers. The only diagnosis they gave him was he was all of a sudden at five years old autistic…although he has never shown any signs of being on the spectrum! In a search to get him help with over twenty doctors, we finally saw an integrative doctor out in Connecticut who ran over thirteen vials of blood on him and sixteen on me. Two of the test that they performed that finally showed my lyme was the C3A and C4A Protein Test which helps diagnosis people with chronic Lyme that has gone undiagnosed for years like my lyme!
What is a C3A and C4A Protein Test?
Enter C3a and C4a, the new kids on the block in the world of Lyme diagnosis and treatment. The “C” in C3a and C4a stands for complement. Complement proteins work with antibodies to destroy pathogens. They activate immunity through control of inflammation, phagocytosis (ingestion of pathogens by white blood cells) and cell death by lysis (breaking of the cell membrane). There are about 30 of these complement proteins that circulate in the bloodstream making up complement “cascades”, so called because activation of one protein initiates activation of the next, etc.
Patients often ask if there are other medical conditions that may lower or raise the C3a and/or C4a. Both of these complement products may be increased in normal pregnancy and in certain types of vasculitis (an inflammatory condition that destroys blood vessels). C4a levels are elevated in adult insulin dependent diabetes. Those who suspect that chronic fatigue syndrome (CFS) may actually be misdiagnosed Lyme disease may not be surprised to hear that C4a is also elevated in CFS patients
The normal range for the C4a is zero to 2830. In my chronically ill Lyme patients, I have seen C4a levels as high as about 26,000. However, most of my patients start with a pre-treatment level between 6000 and 12,000. As you can see by my test above my C4A test was over 16,000!
What to tell your doctor…
If you would like your health care provider to order your C3a and C4a levels, it is extremely important that the tests be performed only at the National Jewish Medical and Research Center Laboratory in Denver. LabCorp has a contract with National Jewish and therefore your health care provider can order LabCorp tests # 840702 (C3a) and # 857334 (C4a). LabCorp uses two different send-out labs for the test and it is important to indicate that samples should be routed to National Jewish for most accurate results. Ask your health care provider to write on the requisition slip in large letters: “ACCESSIONING: C3a & C4a MUST BE ROUTED TO NATIONAL JEWISH”. To find the LabCorp drawing station nearest you, go to www.labcorp.com and enter your city or zip code in the space provided in the lower left of the home page.
If your health care provider writes the ICD-9 (diagnostic) code of 279.3 (Immune dysregulation) on your LabCorp requisition slip, insurance will more than likely cover the C3a and C4a tests.
What is a CD57 Test?
Let’s start by going back to basic high school biology. You may remember that white blood cells (a.k.a. leukocytes) are the components of blood that help the body fight infections and other diseases. White blood cells can be categorized as either granulocytes or mononuclear leukocytes. Mononuclear leukocytes are further sub-grouped into monocytes and lymphocytes.
Lymphocytes, found in the blood, tissues, and lymphoid organs, attack antigens (foreign proteins) in different ways. The main lymphocyte sub-types are B-cells, T-cells and natural killer (NK) cells. B-cells make antibodies that are stimulated by infection or vaccination. T-cells and NK cells, on the other hand, are the cellular aggressors in the immune system and are our main focus in the discussion that follows.
NK cells have their own specific surface markers. The predominant 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. You may have heard Chronic Fatigue Syndrome patients talk about their CD56 counts. A smaller population of NK cells are CD57+
No one knows for sure why CD57+ NK cells are low in Lyme disease patients, but it is important to note that many disease states that are often confused with chronic Lyme (MS, systemic lupus, rheumatoid arthritis) are not associated with low CD57+ NK counts. The good news is that for most Lyme patients the CD57+ NK level increases as treatment progress and health is regained.
CD57 markers can also be expressed in other kinds of cells, including T-cells, so it is important to distinguish between CD57+ T-cells and CD57+ NK cells. Clinicians need to be aware that many testing laboratories claiming to perform the CD57 test are actually looking at CD57+ T-cells rather than CD57+ NK cells, which are the cells of interest in chronic Lyme disease.
- A CD57 natural killer cell level of about 200 is believed to be the area in which it is safe to discontinue use of a protocol without the risk of encountering a relapse.
- Even if your symptoms disappear, you should still continue with treatment until your CD57 reaches about 200 to avoid a relapse.
- 200 is also the level where CD57 natural killer cells should naturally reside.
- High CD57 levels with symptoms could be an indication that one is actually dealing with a co-infection as opposed to Lyme itself.
I hope this post helps you get to the bottom of your mysterious symptoms and to get some answers before it is too late. I ended up getting answers with an integrative doctor over a western medicine doctor because after of years of doing the basic Lyme testing and western blots that all showed negative Lyme scores. The reason for that is a normal lyme test shows your bodies antibody response to fighting a lyme infection, the only problem was my body was never fighting the infection, so the infection had killed my fighter cells so it would never show up on basic lyme testing. So if you have done the basic testing and your doctor is still saying that your symptoms are in your head and you know they are not, I highy recommend getting these above test that are covered under most insurances! As always if you have any questions about this article please feel free to email me at firstname.lastname@example.org.