The Challenge of “Chronic Lyme” (2018)

> There was levofloxacin, which can cause Achilles tendon rupture

Levofloxacin is a fluoroquinolone antibiotic (a generic, also under the brand name Levaquin), along with ciprofloxacin, norfloxacin, and others. Fluoroquinolones can cause a large variety of permanent and disabling systems that doctors are not well trained to recognize. They don't just attack the achilles tendon, for example, they can cause tendon ruptures anywhere in the body, as well as retinal detachments. The Achilles is more likely to go first simply because it's a more used tendon with a higher load to tendon size ratio.

They also can cause a variety of permanent neurological conditions which doctors also aren't well trained to recognize. These drugs are well documented to potentially cause permanent damage to your nervous system, yet doctors don't know about the how or why of the damage, if they are even aware of the link. In my experience, most aren't, given that the link wasn't discovered until more than 30 years after the drugs were released.

They also cause mitochondrial impairment and die-off, along with mitochondrial DNA damage.

Given all of this, how many long term chronic sufferers might have side effects related to fluoroquinolones? Many people who are affected report neuropathy, brain fog, physical impairments, and sometimes psychosis. Given that fluoroquinolones are documented to attack almost any part of human body functioning, how do you accurately link long term chronic conditions to the use of these drugs? For fluoroquinolone damage, there aren't even tests to confirm links, only the lucky few will have doctors who put together the notes from taking medical history.

One world involves researchers looking for the cause of very real symptoms that can persist in some Lyme disease patients even after treatment. This could come from some damage done by the infection, a lingering autoimmune response triggered by Lyme disease, or some other unknown lasting state that occurs after the disease in some patients. This is commonly known as “Post Treatment Lyme Disease” syndrome and it isn’t as controversial as some of these articles make it sound.

The other world is an alternative medicine faction that has misused Lyme Disease as a catch-all label for unexplained chronic symptoms. They leverage the non-specific list of Lyme disease symptoms and some of the unknowns about the disease to convince desperate patients that Lyme is an explanation for all of the difficult problems their doctors haven’t been able to diagnose. They try to convince people that normal Lyme tests aren’t sensitive enough to detect infections and therefore should be ignored, leading many to think they’re positive despite negative tests. There are even speciality labs that claim to have developed their own Lyme tests. Virtually everyone who submits a sample to these labs comes back positive, regardless of their actual status.

To be clear: Patients in both groups are suffering very real symptoms. The debate is not about whether or not these people are sick. The issue is that “Chronic Lyme” has become so crowded by pseudoscience and quackery in the latter group that there are scores of people on the internet who don’t actually have Lyme disease yet are convinced that Lyme explains all of their problems. This has made a mess of the public discourse on the topic and even made such a mockery of the field that many researchers have opted to avoid the topic of Lyme research altogether for fear of being associated with the quackery.

We need to have sympathy for patients in both groups, as they are clearly suffering. However, we also need to be clear about drawing a line between the pseudoscience and the real science, which isn’t always as easy as it looks. Journalists and writers like this one tend to start playing a “both sides” strategy to blur the lines between the real science and the pseudoscience. When people have vague, unexplained symptoms, it can be tempting to go down the path of “what if the pseudoscience is actually right…”. Resist that urge, though. Too many patients are stuck with a misdiagnoses of Lyme disease when they really have some other condition. Encouraging the pseudoscientific chronic Lyme explanation for everything is only holding them back from finding their real diagnosis.

https://web.archive.org/web/20180725163428/https://www.nyboo... is the relevant snapshot.

To me, this is a great piece that discusses, at length, the balancing act that clinicians have to perform when dealing with idiopathic conditions. It seems clear that lyme isn't the cause of "chronic lyme", but then, how do you compassionately handle people who are clearly suffering, while also not reinforcing a false belief, dangerous treatments, etc.?

https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...

There are also some new treatments on the horizon such as dapsone (the antibiotic used for leprosy) and disulfiram, that appear to be giving chronically ill post-treatment lyme patients new relief. This would imply that the antibiotic treatments used before were simply not the right ones to knock out persistent infection.

To my mind, the biggest issue with post-treatment lyme is that the current medical model is wrong and outdated. We think of Lyme as like strep throat - cured with a short course of antibiotics - when we should be thinking of it like TB and Leprosy. TB patients have to take a long, grueling course of antibiotics, and even so sometimes TB can be isolated from bone marrow after treatment.

The variable nature of the disease coupled with the fact that some people do indeed improve with short courses leads medicine to make lazy generalizations that leave out about 20% of the population's disease experience.

My hope is that Covid will help us to learn about other post-infectious syndromes. Long Covid was initially brushed off, but the tsunami of cases coupled with some patients' improvement after vaccination has changed the general opinion to be "Long Covid does actually exist." I hope that will help sufferers from Long Lyme, Long Epstein-Barr, and so on finally get some validation and perhaps even better treatments.

I remember when this happened because work done in imaging the proteins from Lyme disease happened at a nearby lab (Brookhaven) in the late 90s. In short, it was withdrawn because of unfounded complaints about side effects (i.e. anti-vaxers is how I read it). We still have vaccines for dogs, and there are newer ones being developed, but the whole thing is just a terrible success for the anti-science and vaccine crowd. And knowing people that have suffered from Lyme, it is even worse knowing it was all preventable. A bit too timely these days, no?

Also pretty astounding to me that it seems the existence of a vaccine never comes up in Lyme coverage, nor do people that get it (or at risk, which is an ever widening area due to climate change as well) know about it.

(See here [0] for a brief overview, and the related references)

[0] https://en.wikipedia.org/wiki/Lyme_disease#Vaccination

https://www.krisnewby.com/about-the-book