Adapted from my blogpost: Does Chronic Lyme Disease Exist?
It’s Lyme Awareness day 30, and this is my longest video post yet and it is about one of the most important facts about lyme disease. I have so much to say about this!
I recently read an article criticizing patients who claimed they have “chronic” Lyme disease. Obviously, Lyme disease exists, it is caused by the bacterial infection borrelia burgdorferi. But what makes the disease “chronic” and is chronic Lyme disease real?
Typically, a person is diagnosed with Lyme disease through a blood test and is given 30 days of antibiotics. Then that’s it. No more Lyme disease! …Right? Well, yes, typically this is true. Antibiotics are known to be very effective when treating early-stage Lyme disease.
However, 40% – 63% of Lyme disease patients continue to report debilitating symptoms after treatment. So do these patients have “chronic” Lyme disease? According to popular science, no. Lyme disease symptoms after treatment is technically called “Post-Treatment Lyme Disease.” PTLD is considered an autoimmune response, and symptoms are not attributed to an active bacterial infection. This is because, after 30 days of antibiotics, you are supposedly completely “cured” of Lyme.
But there is no way to verify this! There is no traditional test that can determine if the Lyme infection is completely gone in a patient. The typical Lyme disease blood test, the Western Blot test, does not detect infections. It only detects antibodies, which means if you have ever had a Lyme infection, it is possible to always have the antibodies show up positive on the test. The antibodies may show up as active or inactive, but considering that tests miss up to 50% of cases, these tests are not very accurate. There is no current “official” way to tell if the Lyme infection is active for patients.
How can critics say “Chronic” Lyme Disease infection does not exist when there is literally no official test to determine if it does?
Not to mention that there is no treatment for PTLD. Most patients are just told symptoms will probably go away after a few months, and they will just have to suffer through it. Yet many continue to experience symptoms for YEARS, with no end in sight. Most patients have no choice but to look for alternative treatments if they ever want to stop suffering. They join the group of around 40% of Americans who choose to seek alternative treatments because traditional treatments failed to help them. This is not to criticize the many helpful advances that traditional medicine has given to the world. But we must face the fact that the American population, along with the global population, is only getting sicker. While a major part of this is due to a lack of access to healthcare, some of it is attributed to a lack of effective treatments. Just ask anyone with a chronic illness.
One reason traditional antibiotic treatment may not help the Lyme disease patient is because Lyme disease is often accompanied by co-infections. These co-infections can include: Babesiosis, Bartonella, Ehrlichia, Mycoplasma, Rocky Mountain Spotted Fever, Anaplasma, and others. Because some of these infections are viral or parasitical, as opposed to bacterial, many traditional antibiotics will not kill them off. Co-infections are not typically tested for when someone is diagnosed with Lyme. These co-infections could explain continued symptoms after antibiotic treatment. Labeling someone with “Post-Treatment Lyme Disease” is dangerous if the real culprit of symptoms is being caused by a co-infection. Patients will not receive proper treatment with an improper diagnosis.
So, let’s look at the term, “chronic.” According to the U.S. National Center for Health Statistics, the term “chronic” when relating to disease means “lasting three months or longer.” (Other sources claim “chronic” means lasting more than 1 year). So, if anyone has had an active Lyme infection lasting more than 3 months that caused debilitating symptoms, then according to this definition, Chronic Lyme Disease exists. Do you think anyone has ever had a symptomatic and active infection of the Lyme disease bacteria in their body that lasted longer than three months? Chronic Lyme critics, for some reason, think this is absolutely and ridiculously impossible.
What about the people who had undiagnosed Lyme disease for years? I was sick for 6 years before I got my Lyme diagnosis. Many critics of Chronic Lyme claim that only unqualified “doctors” diagnose people with “Chronic” Lyme, without real evidence. This is not true. I was not diagnosed by some mystical “doctor” based on emotions and astrology. I was diagnosed by testing CDC-positive on the Western Blot test given to me by my run-of-the-mill, traditional, primary care pediatrician, and confirmed by two infectious disease specialists.
Since I was experiencing debilitating symptoms for 6 years before I got a proper diagnosis, doesn’t that mean I had a chronic active Lyme infection for all those years? While there is no adequate way to verify my case, I am not the only one who has experienced this. The CDC claims over 300,000 new cases of Lyme disease each year in the U.S., and some top Lyme organizations estimating up to 2 million new cases per year in the U.S, being called one of the fastest-growing pandemic of recent times. Many patients wait years for the diagnosis and report symptoms after antibiotic treatment. Clearly, antibiotic treatment is not effective for these late-stage Lyme disease patients. But that does not necessarily mean the infection is inactive, it could mean that the long-living bacteria have become antibiotic-resistant. The Lyme bacteria is in the shape of a spirochete, giving it the ability to easily hide from antibiotics. (Here is an article explaining how bacteria can change shape to resist antibiotics).
Lyme disease is called “The Great Imitator” because it can “mimic” a variety of diseases, such as multiple sclerosis, arthritis, chronic fatigue syndrome, and lupus. I had POTS (Postural Orthostatic Tachycardia Syndrome a.k.a. Dysautonomia) and the only reason I asked for a Lyme test was because I met many other POTS patients who had a Lyme diagnosis. After my Lyme test came back positive, my doctor now tests all her POTS patients for Lyme. Lyme has also been associated with ALS, fibromyalgia, Parkinson’s, MCAD, Ehlers-Danlos Syndrome, and other chronic illnesses. I would not be surprised if, in the future, it is discovered that many cases of these chronic illnesses have a root cause of Lyme disease. Usually, healthy bodies do not just malfunction for no reason. An ongoing bacterial infection could give a cause to unexplained symptoms.
Chronic Lyme Disease is not alone in disease-deniers. In the early history of the AIDS epidemic, there were people (including “expert” scientists) who wrongly denied the existence of AIDS. AIDS patients were also shamed for seeking alternative treatments when traditional medicine offered no help. They had to advocate for themselves to disprove all the misinformation and receive acknowledgement from the general population.
Nonetheless, if you are going to criticize the validity of “Chronic” Lyme Disease, then do not ridicule the suffering patients! Whether they have Chronic Lyme Disease or not, they are still suffering horribly. Whether you call it “Chronic Lyme Disease” or “Post-Treatment Lyme Disease,” it is the same story. While it is possible to die from complications due to Lyme Disease, the number one cause of death of Lyme Disease patients is suicide, reaching up to 1,200 deaths per year. Telling these patients that they do not have the condition (even though you have no way to verify it) DOES NOT HELP THEM! Criticizing the sick, suffering, and suicidal people will not help them recover, it will only make things worse. If you are going to criticize, then criticize the health care system that failed them. These people are suffering medically, and they are not receiving help from the traditional health care system.
But there is hope! More Lyme advocacy groups are changing laws surrounding Lyme so that chronic patients can receive better care, such as Illinois’ law expanding insurance coverage for Lyme disease treatment.
For more information on Chronic Lyme Disease, check out the International Lyme and Associated Diseases Society, which recognizes persistent Lyme infections that cause chronic symptoms. They also discuss many other controversies surrounding Lyme disease, such as ineffective testing methods.
Have you been diagnosed with Lyme and have experienced symptoms for more than 3 months? Please share your story in the comments! The more we speak out about our experiences, the greater awareness there will be, which will hopefully, eventually, force the health care system to do something about it!
And thank you for watching this video all the way through! I encourage you to SHARE this video on your twitter, facebook, and everywhere. It is so important that Chronic Lyme Disease is considered a valid disease so that more research can be done to find treatments for the MILLIONS of people suffering from this.
Tomorrow is the last day of Lyme Disease Awareness Month, and I am sharing the MOST IMPORTANT fact yet, so don’t miss it!