Does Chronic Lyme Disease Exist?

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, up to 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 active 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 on the test. 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 way 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 a misdiagnosis.

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 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 positive on the Western Blot test given to me by my run-of-the-mill, traditional, primary care doctor, and confirmed by two infectious disease specialists (for more info on my Lyme story, click here).

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. There are over 300,000 new cases of Lyme disease each year in the U.S., being called the fastest-growing epidemic 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 in inactive, it could mean that the long-living bacteria has 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 (1,200 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!

– Kiki

@chronicallyhealed

Advertisements

Suffering: Why do people give me unsolicited advice?

If you have ever lived with a chronic illness, chances are someone has tried to tell you some easy cure: Just try yoga! Just try thinking more positively! Just pray harder! Just eat vegan!

 

These “remedies” have well intention, and even some of them could have merit. But if there was an easy fix to your suffering, well, you would not be suffering right now!

Not only that, but the unwanted advice can also carry the false notion that you are responsible for your suffering. You are the reason you are suffering. That the suffering shows who you are as a person, and who you are as a person is why you are suffering. These are all wrong!

Who you are as a person does not determine your level of suffering. You can’t be intelligent enough, moral enough, hard-working enough, wise enough, or spiritual enough to be exempt from suffering. Nobody is exempt from suffering and suffering is not your fault.

Someone advises a suffering person to work harder or be more spiritual or try some remedy. But when the suffering is not cured after listening to this “advice” the suffering person is then called things like “attention-seeker” “over-reactor” “ridiculous” “lazy.”

But this tells us more about the “advice”-giving person than the suffering person.

These people like to think that their intelligence/morality/wisdom/spirituality is superior enough to get them out of suffering.

Most of the time, this comes from a hidden fear. They are secretly terrified of suffering and they like to think that if they were ever in that situation, they could easily get out of it because of their intelligence/hard work/spirituality.

But suffering does not determine who you are as a person. And who you are as a person does not determine your suffering.

You could be the most intelligent, most wise, most hard-working, most spiritual person in the world and still be subject to suffering. Because suffering is not your fault!

Of course, there are a few times when people suffer because of an unwise decision. But for chronic illnesses, poverty, addiction, mental illnesses, homelessness, and other suffering, it is not your fault and there is no easy way out! It can happen to anyone. And usually the only way to learn this is to go through the suffering yourself. For those prideful enough to think they could easily cure suffering, suffering will be a big slap of humility.

If you are suffering, please know that it is not because you are not smart enough or spiritual enough or good enough. You are more than enough! Your suffering has nothing to do with you as a person.

Remember that even Jesus, the most wise, most caring, most perfect person, suffered: “And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground” (Luke 22:44 NIV). It’s okay to be in anguish over your suffering! Do you think anyone came up to Jesus when he was in anguish and said, “Just try more yoga!” No! Instead, Jesus was with his friends, who were “exhausted from sorrow” (Luke 22:45). They were weeping with him, just as Romans 12:15 says, “Rejoice with those who rejoice, weep with those who weep” (ESV).

It is great to help people who are suffering, but getting angry at them when your “advice” does not cure them does not help!

The best way to help people who are suffering is to be with them in their suffering journey! Show them compassion, understanding, listening, patience, and kindness. Weep with them. Knowing they are not alone and that somebody cares for them will bring so much more healing than unsolicited advice or expectations.

-Kiki