What it is like to have a non-existent disease

Pavla Spalová

Let’s set the facts straight right from the get-go. This article aims to give you an insight into the problems of patients with Post Treatment Lyme Disease Syndrome (PTLDS), previously referred to as Chronic Lyme Disease. In no way is it intended as a review of the latest medical information in the research of Lyme Disease; all sources have been reviewed and chosen carefully. It is merely meant as a source of information for those interested in learning more about the current approach to Czech patients suffering from a controversial disease.

What are Lyme Disease and PTLDS?

Lyme disease (LD) is the most common infection caused by a tick bite. The first differences of opinion appear in the very description of the disease. Some medical experts say it is a well-treatable, often spontaneously disappearing but very often mythicized disease. They claim that the feared chronic forms are very rare and should not occur at all after proper treatment (Řepa, 2016).

PTLDS, on the other hand, refers to symptoms related to Lyme Disease which some patients experience even after the treatment has ended. Řepa (2016) gives the following description:

Difficulties some patients experience after a successful treatment include joint pain, headache, tiredness, a feeling of reduced performance, and other problems. The difficulties can be caused by a history of (and no longer inactive) infection that has caused changes that are gradually healing, or by psychogenic causes known as somatization or somatoform disorder, and the like. They cannot be influenced by antibiotics (Léčba section).

Other experts attribute the symptoms to daily hustle and bustle. According to them, the pain is related to aging (Koubová, 2015, para. 2). Being given this diagnosis myself at the age of 26 and hearing these words from the mouths of doctors directed at me left me speechless, confused and helpless. I hardly consider myself old at this age; therefore, I did not understand why I should be content with such an explanation.
There have been studies over the years focusing on the treatment of patients with PTLDS and recognizing the common denominators. So far, most studies have seemed to support the outcome of the original studies of the National Institute of Health (NIH) in the US. Three placebo-controlled clinical trials conducted under the National Institute of Allergy and Infectious Diseases and funded by the NIH have proven that extended antibiotic treatment, which usually takes the form of intravenous (IV) treatment, is not beneficial for Lyme Disease patients and that it bears significant risks (“Lyme Disease Antibiotic,” 2018, Clinical studies section).

What is it like to suffer from PTLDS?

Now back to the patient perspective. Imagine what you feel like when you fall ill with the flu. And now imagine what it must be like to feel that way every other week. Your muscles ache, you may have a fever, cold sweats, pain in the joints, headaches, nerve tics in different muscles. Sometimes you wake up in the morning and develop a completely new symptom. You never know what the next day or week has in store for you. And then it all goes away and you start feeling better. This lasts a couple of weeks or a month and then it is back.

More often than not, all you can do is treat the symptoms as they come. You take painkillers when you have a headache, you try to get more sleep because you feel exhausted, you may seek medical help because your neck is blocked again (probably for the fifth time this year alone). You do not bother seeing your GP anymore or explaining what else you are dealing with to other doctors because you know what the response will be. They might advise you to seek psychological help because you are probably under a lot of stress. Even if you try to explain that you quit your old job before finding a new one where you only work part-time to reduce any stress you could face, it is always the same.

To demonstrate the daily struggles, I am including a video to show you what patients like me sometimes have to deal with. It was made a couple of weeks ago, after an episode of fever. Fever usually triggers additional reactions throughout my body, and this time, it was facial nerve paralysis. I filmed it in the hope of showing this to my doctors at the Bulovka Hospital and making them realize I was not making this up. Only after showing them the video did they start taking me seriously. The audio is not included because it gives a survey of my medical details. This is what I looked like in the morning before I went to work. By the evening, my left eyelid and the left corner of my mouth were drooping significantly.
There are patients in the PTLDS community who have had success with combined antibiotic treatment. They went through extensive researching, reading, telephoning and saw dozens of healthcare providers before coming across someone willing to help them. Most of these success stories have one thing in common – the doctor who finally treated the patient was not from the Czech Republic. That does not mean that Czech doctors cannot help patients in this country, but it only emphasizes that they are not yet taking the right approach to the treatment.

Self-Diagnosis

Realistically, when you research LD online, you will come across many forums dealing with self-diagnosing patients, who may or may not be suffering from Post Treatment Lyme Disease Syndrome. Doctors often refer to this phenomenon as Google Diagnosis. No wonder they don’t want to deal with people who base their diagnosis on assumptions only. Laboratory results should always support the diagnosis. However, with PTLDS it is a bit trickier because the lab results often turn out inconclusive and patients end up labeled hypochondriacs. The fact that the infection can spread to different parts of the body, and thus cause such a variety of symptoms, certainly does not help either.

Why don’t we treat PTLDS?

One thing on which medical experts agree is how little we know about PTLDS, what causes it, and how to treat it effectively. While Lyme disease can be confirmed by tests, there is no PTLDS test, and there is no approved or proven treatment; it is this that creates the layer of controversy concerning this topic. Since there is no standardized approach to the treatment of PTLDS patients, a lot of them complain, and it takes time to find a doctor who is open to taking you seriously.

There are many stories from the patient community online. People had been left in such debilitating conditions that it has affected their lives tremendously. And yet when they went to seek medical help from healthcare providers, they were turned down or sent to psychologists because no tests gave clear evidence to support their claims. They were mostly given a diagnosis which hides under the name “subjectively reported difficulties”.

New research by experts from the Johns Hopkins Bloomberg School of Public Health, published in early February in PLOS ONE, has appeared like a light at the end of a tunnel. It suggests that long-term disease associated with borreliosis is more frequent and more severe than anyone previously thought (Koubová, 2015, para. 1). According to Koubová (2015, Kouzelný lék nezabírá section), John Aucott, professor of rheumatology at Johns Hopkins Medical School, says it is unnecessary to discuss the existence of long-term problems associated with Lyme disease while people suffer from debilitating disease.

John Aucott and his research team found out that PTLDS is discoverable by central nervous system immune activation, detectable via positron emission tomography (PET) acquisition. Even if further testing is necessary, these results spark new hopes for all patients who had previously been refused any additional treatment.

Another research that could bring new insights into the field of treatment for chronically ill LD patients focuses on the slow-growing variant form of Lyme bacteria. These bacteria are thought to be persistent in the currently available antibiotic treatment and may cause PTDLS. Many patients who undergo regular LD treatment do not get rid of the infection completely, and this can cause their ongoing difficulties. The slow-growing bacteria phase is a particular stationary one in which the bacteria reside under low-nutrient conditions. This makes it almost impossible for antibiotics to identify and destroy the bacteria (Feng et al., 2019). In the study, a combination of three different drugs eradicated the infection in mice. However, further clinical trials of antibiotic combinations in PTLDS patients will be needed.

List of references:

Řepa, F. (2016). Lymeská borelióza – běžné onemocnění, nebo zákeřná a neléčitelná nemoc? [Lyme Disease – Common Disease or Insidious and Incurable Disease?] [Online]. Retrieved October 28, 2019, from http://bulovka.cz/lymeska-borelioza-bezne-onemocneni-nebo-zakerna-a-nelecitelna-nemoc/

Koubová, M. (2015). Lymeská borelióza: antibiotika často nestačí. Následné příznaky však léčit neumíme [Lyme Disease: Antibiotics are Often Not Enough. However, We Cannot Treat the Following Symptoms] [Online]. Retrieved October 28, 2019, from https://www.zdravotnickydenik.cz/2015/02/lymeska-borelioza-antibiotika-casto-nestaci-nasledne-priznaky-vsak-lecit-neumime/

Lyme Disease Antibiotic Treatment Research [Online]. Retrieved October 28, 2019, from https://www.niaid.nih.gov/diseases-conditions/lyme-disease-antibiotic-treatment-research

Feng, J., Li, T., Yee, R., Yuan, Y., Bai, C., Cai, M., … Zhang, Y. (2019). Stationary Phase Persister/Biofilm Microcolony of Borrelia burgdorferi Causes More Severe Disease in a Mouse Model of Lyme Arthritis: Implications for Understanding Persistence, Post-Treatment Lyme Disease Syndrome (PTLDS), and Treatment Failure [Online]. Discovery Medicine, 148. Retrieved October 28, 2019, from http://www.discoverymedicine.com/Jie-Feng/2019/03/persister-biofilm-microcolony-borrelia-burgdorferi-causes-severe-lyme-arthritis-in-mouse-model/