eli5: what is the difference between chronic lyme disease and lyme disease? How can it be debilitating?
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Lyme disease is an actual real bacterial disease caused by the Borrelia burgdorferi bacteria. It is transmitted by tick bites and is treatable with antibiotics.
Chronic lyme is not a real disease. It’s a broad collection of symptoms that people claim to have (and may even genuinely experience) but that have no scientific connection to real Lyme disease or the Borrelia burgdorferi bacteria. In other words, it’s not real – it’s a made up disease that people claim to have. People may genuinely be experiencing the reported symptoms, but they have no relation to actual Lyme disease.
Chronic Lyme should *not* be confused post-treatment Lyme disease syndrome, which is the persistence of symptoms of Lyme disease in a person who actually had the infection even after the infection has been eliminated. Post-treatment Lyme disease syndrome is real but rare and typically only occurs in people who were infected for a longer period of time before beginning treatment.
First off, not going to reply to the other person because they’re technically right and I don’t want to bug them, but while post-treatment lyme disease is the official name for experiencing symptoms after you’ve technically recovered, I would expect many people like you use chronic lyme disease to describe post-treatment lyme – it would have been my instinct too.
I think their explanation was pretty good, so I’ll provide an additional analogy that’s been in the news a lot more: covid.
Normal covid has symptoms in common with colds and flus – coughs, fevers, losing your sense of smell, fatigue etc. This is like the original infection with lyme disease – the pathogen causing the disease is replicating in your body and damaging your cells.
Long covid happens more commonly in people who had severe cases, but can show up even in mild cases. Even after the virus is gone, you still get symptoms, although they tend to be more similar to chronic illness like chronic fatigue syndrome: shortness of breath lasting for long periods, brain fog, small amounts of exertion completely wiping you out for several days. The prevalent theories are that it has something to do with the overreaction of the immune system, but we’re not sure. Post-treatment lyme is analogous to long covid. Many of its symptoms are similar to long covid – brain fog, chronic fatigue etc. It can also include muscle issues and I believe partial paralysis in the vein of nerves sending signals but muscles not responding, although I’m not certain on that one. We’re not sure what causes it because it’s only been recognized as a real thing for a few years (as it often is with chronic illnesses), but its likely its the same sort of immune system damage as covid.
Lyme disease is a bacterial infection you can get from tick bites. It can cause a bullseye shaped rash, arthritis, paralysis, fever, and heart and nerve problems. It’s treatable with antibiotics, though some of the damage may be permanent even after the bacteria are gone.
Chronic Lyme disease is a collection of chronic inflammatory symptoms that people attribute to having had Lyme disease before. The evidence that it’s actually related to Lyme disease in most cases isn’t all that strong. People just get chronic illnesses sometimes, and there’s an industry of persuading people to blame Lyme disease for their chronic illness, whether or not that makes sense in their particular case.
If you want a more in-depth look at both, I recommend a podcast called “[Patient Zero](https://www.patientzeropodcast.com/)” which was created by New Hampshire Public Radio
Hi- this causes a lot of confusion.
It’s best to explain chronic Lyme disease (CLD) as a system of fake medicine, which is also often called quackery, pseudoscientific medicine, and health fraud.
It is a belief based on feelings that have been proven false.
Many systems of fake medicine think they have discovered the “[one true cause of all disease](https://sciencebasedmedicine.org/the-one-true-cause-of-all-disease/)”. For example:
* a popular fake medicine claims that “[toxins](https://en.wikipedia.org/wiki/Detoxification_(alternative_medicine))” are the cause of all problems.
* classical [chiropractic](https://en.wikipedia.org/wiki/Chiropractic) teaches that “subluxations” (which don’t exist) are the cause of all problems because they interfere with the magical “innate intelligence”
* Chinese medicine [claims](https://en.wikipedia.org/wiki/Traditional_Chinese_medicine) that qi (pronounced chee) energy flows along meridians, and that interferences or imbalances in the energy flow cause disease. Meridians and qi do not exist.
All of the above systems of fake medicine involve fake diagnostic criteria and fake solutions.
* For “toxins”, a fake urine test might be sold. And juices and supplements are often the fake treatment.
* Chiropractors are notorious for inappropriate X-rays, which that claim can reveal subluxations. Then they manipulate the spine, which they say can correct the subluxations.
* Chinese medicine uses [tongue](https://en.wikipedia.org/wiki/Tongue_diagnosis) and [pulse](https://en.wikipedia.org/wiki/Pulse_diagnosis) diagnosis. And acupuncture needles are used, supposedly to correct the flow of qi.
With CLD, Lyme is considered the cause of all of life’s problems. The believers in CLD are claimed to be “Lyme literate”. Just like only a chiropractor can detect subluxations, the “Lyme literate” practitioner is the only one who adherents believe can detect CLD and so-called “co-infections”.
The “Lyme literate” use fake diagnostic criteria (often with fake testing), facilitate fake diagnoses based on the fake diagnostic criteria, and then sell the fake treatments. Like all fake medicine, they provide feelings of hope and control, which perhaps are not provided by conventional medicine.
A major “innovation” of CLD fake medicine is the use of real drugs, including potentially harmful antibiotic regimens. This is similar to how real drugs like ivermectin and hydroxychloroquine are inappropriately used for COVID.
Besides inappropriate FDA-approved drugs, all manner of fake treatments are sold for CLD. The most popular are herbs, supplements, warming treatments like sauna, inappropriate diets, bee stinging, ozone, and homeopathy. (Here’s a [long list](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4490322/))
If a treatment doesn’t work, the “Lyme literate” practitioner has many excuses:
* They claim feeling worse is a good thing. They say that it means the bacteria is dying.
* They claim that an undetected “co-infection” is causing problems. They then sell tests and treatments for a “co-infection”. They love to sell fake babesia, bartonella, mycoplasma, and “toxic mold” diagnoses, even though only babesia is a true but uncommon co-infection of Lyme.
* They claim that additional treatment at great cost and risk is needed (potentially over years)
* They claim that there is a conspiracy against them by mainstream medicine.
CLD is based on a real health problem (Lyme disease and its complications), which makes it difficult to understand what’s true and not true.
With [real Lyme](https://publications.aap.org/pediatricsinreview/article/35/12/500/32562/Borrelia-burgdorferi-Lyme-Disease), the bottom line is that:
* real Lyme disease is a readily curable infection with excellent outcomes,
* It is well-characterized and very geographically and seasonally restricted.
* In North America, if untreated for many months to 2 years, Lyme disease can cause [Lyme arthritis](https://www.cdc.gov/lyme/treatment/LymeArthritis.html), which is pain and swelling in one or a few large joints, typically a knee.
* Lyme arthritis is generally localized to the knee (or other large joint) and is not “all over”
* Lyme arthritis can last several years if untreated, but fades with time without antibiotics
* Lyme arthritis used to be frequently called “chronic Lyme arthritis” , when it was untreated or caused persistent symptoms after treatment. Because of confusion, this terminology is no longer used.
* Even if some symptoms persist after treatment, long-term antibiotics have not been found to be useful.
* There is an epidemic of falsely diagnosed Lyme disease, such that the most frequent reason for persistent symptoms is because Lyme wasn’t the cause in the first place. The assumption that persistent symptoms means persistent infection is not supported by evidence.
**references:**
[Chronic Lyme disease: Fake diagnosis, not fake disease](https://sciencebasedmedicine.org/fake-diagnoses-not-fake-diseases/)
[Dubious Alternative Lyme Treatments Are Killing Patients](https://www.bloomberg.com/news/features/2020-10-07/lyme-disease-dubious-alternative-treatments-are-killing-patients)
[What Happens When Lyme Disease Becomes an Identity?](https://www.thecut.com/2019/07/what-happens-when-lyme-disease-becomes-an-identity.html)
[Antiscience and ethical concerns associated with advocacy of Lyme disease](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4489928/)
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