The Big Bomb Drop!

 Appointment 4 – 12/01/2020

This is the appointment that I had been eagerly anticipating for the last 4 months.  Not the actual appointment itself but an appointment where we found something that was potentially a cause of some of these issues and not just a result of something.  Something that if we are able to fix it, I could actually make some progress towards my body working properly again.  What was this diagnosis?  The answer would be something that I had heard of many times in my life, especially growing up in MN, but I had no real knowledge about.  The answer would send me down a rabbit hole of research, opinions and other people’s experiences until my head was spinning.  The answer was Lyme Disease!  I quickly was up to my eyeballs in IgM versus IgG antibodies, Lyme band numbers (along with intensity percentages) and CDC (USA) testing results criteria versus alternate (the rest of the world) testing criteria and how all these things relate to each other and what it means for me and my body.  First, I will tell you what my test results showed and what that means (or at least what I thought it meant).   I was informed by my doctor that my test results were what they called IgGAlt Equivocal.  What?  What does that mean?  Basically, she said that I didn’t test positive for IgM antibodies (recent infection) based on either the CDC criteria or the Alternate criteria.  This means I hadn’t recently been infected with the Borrelia Burgdorferi virus, so I had that going for me.  I also tested negative for the IgG antibodies (past infection) by the CDC standards.  This is where it may get a bit confusing so I will try to simplify it like it was explained to me at the time.  My test results were what they call Alternate Equivocal.  This means that I didn’t fit the criteria for either a positive test or a negative test.  What?  That makes no sense!  Don’t you either need to be positive or negative?  Isn't it like being pregnant?  Either I have the Borrelia Burgdorferi virus, the virus that causes Lyme Disease, in my body or I don’t.  I have it in my body and they only way to have it in your body is to be infected by something that is carrying the virus (Deer tick, mosquito or even perhaps even sexually transmitted in certain stages).  Borrelia B was engineered in a lab and therefore is not something found naturally in our bodies.  Lyme Disease progresses along a path that was explained to me as a two humped camel.  The first hump is where you would test positive for the IgM antibodies (during the initial infection stage) and the second hump is where you would test positive with IgG antibodies.  The picture below illustrates a normal immune sequence for a Lyme Disease infection.  The numbers represent the antibody band numbers by which Lyme Disease is measured.  The line represents the 60% intensity needed for consideration in a Lyme diagnosis.

 

Between these two humps is a valley where you would not test positive for either IgM or IgG antibodies.  Does this mean that the virus is not in your body?  No, the virus progression moves along this imaginary two humped camel from left to right (and doesn’t move back left).  So, once you have left the initial IgM positive stage, you will never test positive again for IgM antibodies (unless you are reinfected a subsequent time).  Once you have left the first hump, you progress to the valley between the humps, etc.   If you are like me, you know someone who had tested positive for Lyme at some point but then was retested and the test came back negative.  Does this mean that the body has rid itself of the Lyme?  Highly unlikely!  It is likely living in the valley where the CDC does not recognize it as positive.  If the CDC doesn’t recognize it as positive, then how do you know you have it?  Because, the Western Blot Lyme Disease test when done by The Medical Diagnostic Laboratory (MDL), in New Jersey, gives you more than just a CDC positive or negative result.  This report gives you the exact band strengths and the CDC and Alternate criteria results.  

Lyme Disease is represented in the body by different band numbers and intensity percentages.  Per CDC standards, you must have 5 or more bands from their list above 60% intensity to qualify for a positive test result.  My test showed that I had four bands from the CDC list above 60% and one other band at 35% so therefore didn’t quite qualify for a IgG positive result.  Clearly, the virus is in my body and fortunately the rest of the world uses the Alternate Criteria and additionally uses the in-between, Equivocal, result.  The Alternate Criteria requires three or more bands, from a slightly different list, at 60% intensity to be considered positive.  I had one band from their list above 60% and another at 58%.  The one band that I had in common between the two lists happened to be at an intensity level of 222%!  The band from the Alternate Criteria that was at 58% intensity was later explained to me by my clinic as one of two band numbers that indicate Chronic Lyme Disease.  By the graph pictured above, I have two band numbers listed in the late infection stage.  

Ok, I have Chronic Lyme Disease!  Now what?  People struggle trying to treat Lyme for years if not decades and never get rid of it, right? Historically, that has been the case but in recent years a new treatment called Anti-Sense Oligonucleotide Therapy for Lyme has been 96% percent effective in killing off Lyme in the body.  It is a Messenger RNA treatment (I will go more in-depth on this in one of my nest posts).  This type of treatment has been used for some time in the treatment of certain types of cancer (known as SOT for cancer) but only in recent years has it been applied to Lyme.  There is a lab in Greece, called the Research Genetic Cancer Center (RGCC) that does all the heavy lifting for this treatment.  The treatment is a bit expensive, and of course not covered by insurance.  If it can rid my body of the Lyme and possible help reverse the Hashimoto’s, it is well worth the cost.  This was quite the appointment with so much information presented and so much more to research and discuss with my family.  I am exhausted just writing it all down!  

My next post will discuss more about Lyme and its origin,  In addition, I will talk about what exactly is SOT Therapy for Lyme, why I decided to do the treatment and what that treatment consists of and timelines, etc.  Thank you for following with me on my journey and for all the support I have received from my friends and family!