this morning in microbiology, we spent the entire lecture learning about the multi-systemic disease, Lyme disease. my professor, Dr. Christian Eggers, has been researching the Lyme spirochete, Borrelia burgdorferi for the past 17 years. He is the first person in my life who I have heard talk about Lyme disease with factual information from both sides of the controversy without being biased, stubborn or rude. Could be that he watched his words due to his knowledge of my plight with Lyme, but i actually think it’s just because he’s onto something, and he has the right ideas. So here’s some of what i learned today (and some of it i already knew)..
there are 12 different species of borrelia that cause Lyme disease. B. burgdorferi is most prevalent in the U.S. and is characterized by intense arthritis, which is why the disease is typically associated with arthritis. other species of borrelia manifest with a larger focus on other kinds of symptoms, such as neurological. these species are most often found in Europe. even though Lyme wasn’t named until the 1970s, the Europeans have been dealing with the illness since the mid-1800s. because their symptoms held a broad range, they were never able to put the pieces together and recognize them as one single disease. for the U.S. it was easier, because the recognizable outbreak involved arthritis in all ages of people. Borrelia species have the ability to evade the immune system and adhere to certain cell types, but the do not produce toxins or exotoxins.
The entire course of Lyme disease is related to the immune response. basically, it is not specifically the spirochete that is producing certain symptoms- it is the presence of the certain spirochete in certain tissues and organs that triggers a person’s immune system response which makes us feel sick. this is why some people can have Lyme disease and experience just a rash and some joint pain. as the spirochete disseminates to the tissues and throughout our bodies, the immunological response creates our manifestations. this is why no single person experiences Lyme disease the same, whether it be the same time line or the same symptoms, etc.
the best way to diagnose Lyme as I’m sure we all know, is by signs and symptoms. diagnostics are based on antibodies, but the humoral immune system does not generate a good response until about 8-12 weeks after being infected (typically). so if someone goes to the doctor as soon as they get bit or find a rash, their tests will be very unreliable, and this is a big problem. its an even bigger problem when there is no rash, or no recall of a tick bite and if manifestations aren’t typical of the disease.
here’s the part where my respect for Dr. Eggers grew: he said, there is no empirical evidence that Lyme disease and antibiotics are correlated for long term- before you jump the gun and think we have another one of these scam artists on our hands, listen to his explanation. chronic Lyme disease he says is a controversy, very misunderstood, but there are most definitely 4 different populations of it; he didn’t’ go into them all but he highlighted my population: someone who has had treatment, has not responded well to it and is experiencing 3rd stage manifestations which they also recognize as chronic Lyme disease post-treatment.
here’s the problem: there is no scientifically verifiable evidence that the spirochete is responsibly for the 3rd stage of Lyme disease and at that point it seems it is immunologically driven. researchers everywhere are searching for it, in Germany they work on finding this every single day. i’m sure we have all heard that in the 3rd stage there have been spirochetes found but i guess what it means is that the experiments that prove the presence of the spirochetes are unable to be successfully repeated, therefore, “scientifically verifiable evidence” doesn’t exist. this isn’t an easy thing to accept, because as most of us know the spirochete can transform, hibernate and completely fall under the radar. so whether or not this be true, it doesn’t matter until we have a scientist who can continuously demonstrate the evidence in multiple situations. this right here, is why the CDC does not recommend long term antibiotics. (long term as in longer than two 4- week courses of antibiotics and one 4-week course of IV antibiotics for neurological and cardiac symptoms)
this is the point where i almost felt like a traitor. i have been on antibiotics for almost 2 years. i have seen improvements and i have seen setbacks, it seems to vary by body system and it doesn’t seem to make sense. i have a lot of faith in my LLMD and the team there, i know they have the best intentions and they are tackling my disease to the best of their ability. they know when enough is enough, i know they wouldn’t let me die. but still, there is good evidence that death can result from long term antibiotics. so why is this so controversial? because, Lyme disease is a disease that manifests due to your individual immune response. there can be a person who can handle a year of IV antibiotics and get better. there can be a person who can’t even handle of month of IV. there can be someone who takes antibiotics for 7 years and is healthy again. there can be an individual who takes antibiotics for a year and dies. it’s not the doctor’s fault that they can’t predict who’s immune system will react in what way. so if a patient wants to go for it and takes antibiotics for however long they want until they feel better, who is to stop them? the CDC thinks they are helping people with their laws, and those patients who are naive and out of the loop with what’s really going on with Lyme disease, maybe they are helping- but for those who know what they want and are willing to do it to get better, to those who have a feeling that antibiotics is what will save them- the CDC is killing them, not the antibiotics. the issue with this type of controversy is you rarely find someone in the middle like Dr. Eggers seems to be- he knows what he’s researched and he believes in it, but he doesn’t have rude, harsh and strongly biased opinions about the individuals on the other side like many doctor’s i have encountered with. what’s sad is that the controversy is harsh. i raised my hand to ask a question and Dr. Eggers asked if i was going to yell at him- i thought it was funny, being that we both have this understanding of the injustice.
Dr. Eggers said, many people will be stuck in this stage where antibiotics aren’t helping and perhaps it’s then that they should look into alternative ways of healing. for me, that seems to be what i have to do. my body can’t seem to handle the antibiotics anymore, even if it’s just a break rather than a lifetime halt. if you ever get to this point, you’ll know. and some people never will. usually in class when disease or Lyme disease specifically is brought up, it takes a lot for me not to cry. today there was only one time where i had to hold my tears; one girl raised her hand and commented on how she knows someone with Lyme who is in a wheelchair and said i thought you said it couldn’t get that bad. Dr. Eggers responded saying, people dont usually die from Lyme itself, that doesn’t mean that it doesn’t severely debilitate them, it’s actually really sad to see how some people are so debilitated by the disease. another girl raised her hand and asked, but they make a full recovery right? Dr. Eggers replied, No, they usually don’t.