I am stating a lot things here in a way that makes it sound like they are a fact. I haven’t talked to my doctor yet and am basing this largely off of what people with Lyme Disease have shared with me and this youtube video. I researched the doctor speaking in the video and he seems legit and to have helped many people. Anyway… point is, don’t go quoting me or making any decisions based off of what you read here I’ll give you more info once I talk with my doctor and I’ll make any corrections.
The Story on Chronic Lyme Disease
So the first round of Lyme Disease testing was negative. It tested the memory cells for signs of a past infection and then cells for a current infection. The problem is, through the help of other bloggers and some research I have done, I have come to find this test isn’t the best method to diagnosis someone with Lyme Disease this late in the game. There are all kinds of tests. The farthest I probably will go at this point is with a test called Western Blot that tests for 14 different proteins/bands. 6 of these bands are specific to Lyme. If you test positive for 2 out of these 6 bands, it is EXTREMELY unlikely the test is showing an antibody to some other disease and therefore, a sure bet you have Lyme Disease. These 6 bands test for antibodies very specific to Lyme and not other diseases. Most commercial labs only test for 3 different proteins, which is what the CDC calls for. Doctors dealing with Lyme tend to state only testing for 3 proteins is inadequate.
So… why is Lyme Disease so hard to test? My understanding is the disease “hides” from your immune system in order to survive. The 14 proteins I mentioned earlier, are in constant movement on the covering of the Lyme germ. They are constantly moving and changing. This makes the immune system think it is seeing a new infection over and over.
There are two types of tests you can do when testing for proteins. One is IgM and one is IgG. You would only get a positive IgM if your body is fighting an infection. Once the infection is killed, the IgM would be negative. IgG will always be positive after you’ve had a particular disease. For example, people who have had mono will test positive forever when a IgG test is done on them, but they won’t test positive for IgM after the infection is dealt with and gone. This (according to Dr. Ross from the video) is basic science.
He states some doctors would say that you are getting a “false positive” if the Lyme tests repeatedly come back testing positive for IgM, despite antibiotic treatment. He says based on the science I just explained, this doesn’t make sense. Your body will never test positive for IgM proteins unless it is currently fighting an infection. People with Chronic Lyme Disease are always currently fighting an infection because, like I said earlier, the protein is constantly changing itself so the immune system can’t kill it.
The Bottom Line
So as you can see, it is all very confusing. I know this sounds terrible, but I’m annoyed at the prospect of pursuing another diagnosis. I know I’m privileged to have the ability to see all these doctors and have all these tests, but I just want to live life! I’m grateful for my good fortune, but that doesn’t mean I have to enjoy this process. Chronic Lyme Disease is poorly understood and not widely accepted in the medical community. I don’t think I have it for two reasons. One is that it is a gut intuition that I do not. The second reason is much more logical… Multiple members of my family on my Mom’s side have symptoms similar to mine, just more minor. I got lucky and got ALL of them . I even have sister who had POTS. That’s right HAD. So that gives me hope! So it seems like this is something with more of a genetic root than a transmittable disease root.
My plan of action, is to do the Western Blot with a reliable lab and have myself tested for the 14 proteins. After that, I will be done pursuing the Lyme Disease prospect. I’m probably going to hold off on all of this until after Christmas. I’m not quite sure right now to be honest! I’d like to thank all of the people who told me my symptoms sound a lot like Lyme Disease symptoms and took the time to explain the ins and outs of Chronic Lyme Disease to me. I really appreciate it!
In Other News…
I’m off to get ready for bed. I only slept about 4 hours last night so today has been very rough. I also caught one of my step-daughter-to-be’s lovely daycare colds. My voice is nonexistent! I tend to get POTS flare ups when I am sick and for awhile after, so I want to rest. Being sick for Christmas would be no fun! Despite all of this, I am in a great mood. Jake and I put together Emma’s princess bike that Santa is bringing her last night, and I finished up wrapping presents. It was bunches of fun! We’ll have Emma with us from Friday until Christmas day at noon. I can’t wait to see her face on Christmas morning
Thanks for reading!