Eli5: Why is there such a big controversy about the existence of chronic lyme infections?
In: Biology
There is still little known about it. Doctors don’t know how to diagnose it. Hopefully as more research is done, there will be better understanding and treatments.
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Post viral/bacterial chronic illnesses are controversial because no one is quite sure what is going on. What actual damage if any remains behind after the original disease is gone.
There even been a suggestion that there isn’t so much left over damage as the body has a sort of regulation system (that forces you conserve energy etc when ill) that has been ‘reset’ leaving normal activity to seem exhausting even though there’s nothing else left wrong with you.
But what is most controversial is the extent , if any, to which the left over effects can be characterised psychological. And whether it can be improved by the sorts of things we use in psychological cases such as maybe anti-depressants , cognitive behaviour therapy, or little steps increasing exercise. There is some deeply disposed evidence that for example cognitive behavioural therapy might help.
Why controversial – because those suffering feel like from their symptoms perhaps having been dismissed as completely imaginary or malingering in the past , they now feel like it’s being suggested that they are mentally ill or even somehow their own fault?
At least that’s what I’ve picked up.
Some people who are infected with Lyme Disease report ongoing symptoms of fatigue, aches, and difficulty thinking. There is no good evidence that the bacteria that causes Lyme Disease persists in these people, so it’s not correct to call their condition “Chronic Lyme Disease.” Instead, doctors prefer “Post-Treatment Lyme Disease Syndrome” to indicate that whatever is going on, it’s not because of a continued Lyme Disease infection. There is also copious evidence that extended anti-bacterial treatments does nothing to help with PTLDS compared to a placebo.
PTLDS falls into a big bucket of conditions that includes Long COVID and Fibromyalgia where patients report symptoms that are difficult for the doctor to observe directly (like pain or fatigue), have no apparent root cause, and have not been seen to respond to any treatment. A cynic would say that people reporting these conditions are just being “sensitive” and medicalizing the physical difficulties of ordinary life. People who claim these conditions and their allies say that view is trivializing real and debilitating conditions and getting in the way of research or innovation that may help us understand and cure them.
A lot of it is mostly in the experimental treatment part. Cefuroxime (+ variants), doxycycline (+ variants), and amoxicillin (+ variants) are the established oral antibiotics used to treat it. Onøy antibiotics have had a proven effect. IV ceftriaxone is the big boi. The contention and disagreements, and dangers, is the dosages. Highly experimental treatments give doses that are incredibly high, which increases injury and resistance risks to a point where the overall scientific community deems unacceptable given the current information we have on the efficacy, outcome, and risk factors of such treatments.
Post-Treatment Lyme Disease Syndrome is the name given to patients who feel many of the symptoms of Lyme Disease, but have no signs of current infection. This is where the alternate medicine area has gotten a bit of a foothold. Advocating for extremely high doses of antibiotics and natural remedies with only circumstantial or highly biased evidence, or no evidence at all, that it has any effect whatsoever.
Lars Monsen, a famous Norwegian outdoorsman, recieved experimental cocktails of high dose antibiotics in Germany, because the Norwegian Department of Health refused to provide it. He recieved the established treatment, was tested and cleared of infection, but he still had some symptoms, which is why he went to Germany for this experimental treatment.
Chronic Lyme treatment is the realm of chiropractic (but with bogus pathology results and selling of specialty supplement cocktails, not spinal adjustments) and bizarre hyperthermia clinics. Chronic Lyme disease is probably individuals refusing to accept the aches and pains of getting older and desperately seeking a cure/treament, while pinning it on a nebulous condition that the “mainstream medical complex” can’t or won’t acknowledge.
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