https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/
This isn't to say you haven't been dealing with a lot of garbage, just that you might need to seek different medical care if your doctors are telling you that you have chronic lyme disease.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/
This isn't to say you haven't been dealing with a lot of garbage, just that you might need to seek different medical care if your doctors are telling you that you have chronic lyme disease.
I agree that "alternative medicine" can be a hotbed of pseudo-science and sketchy treatment, but I also think that in terms of a lot of these chronic auto-immune related conditions, our evidence base is still pretty small and there's a lot we don't know. And the dominant Western medical system tends to do much better with acute conditions with a clear etiology of cause/effect than nebulous clusters of symptoms (see also, all of mental health).
My hunch is that chronic lyme, just like for example chronic fatigue that lasts for years after Epstein-Barr, is some sort of auto-immune condition triggered by the initial infection, even if the initial infection is gone. With Lyme it is a little more complicated because there are spirochetes involved.
I assure you I've probably read everything that the NIH has put out about Lyme all the way to some of the wackiest all caps blinking sketchy sell-me-vitamin treatment websites out there, as well as chronic fatigue (I spent the first 7 of those years considering it CFIDS). It nearly destroyed all of my 20s.
Treat prophylatically or not, but try not to get Lyme, that's all I'm saying.
All these things were linked, yet separate. You cannot tell me the chronic fatigue was just my depression, as I can tell a difference, but neither was my depression just from not being able to be active for more than about 2-3 hours each day. Mental health issues pre-dated chronic fatigue, but chronic fatigue intensified them.
I did many treatments, though I chose to never have a PICC line installed for months of IV antibiotics - that seemed like chemotherapy to me then and now, and not without its own risks. Everything from antibiotic regimens to homeopathy to humming with crystals in my hands. Sometimes I was raw vegan, other times I smoked heavily, drank heavily, because nothing worked anyway, why not have fun, etc.
Too long for one comment here, but find me privately if you are struggling with chronic immune stuff.
I'm unsure what eventually worked, and what was time. A lot of it, cliche as it is, was the very strong love of a very supportive partner that saw I could still live, even if I thought I couldn't.
I would say the following things all had major effects, though I don't use any currently - many of them provide symptomatic relief for some things, I'm not sure why things shifted underneath it all.
#1) regular injections of methyl-B12 even with normal cyano-b12 levels
#2) low dose Abilify and modafinil and (sparingly) stimulants
#4) regular yoga practice that provided low-impact exercise, mindfulness amidst the fear that my life was over, and a way back into an awareness of my body that didn't only have me think it was the enemy that was killing me, and of a self that transcended whatever I thought I was
#5) treatment for orthostatic hypotension including low dose steroids, salt pills, compression stockings, etc
#6) psychotherapy
#7) A few times rounds of abx when I was at my worst seemed to help a lot
#8) supplemental testosterone for 2 years when mine was low-normal (is normal-normal now without supplements)
#9) eliminating all processed anything from my diet for about 4 years, all gluten for about 5, all refined sugars for about 5 (can eat anything now without ill-effect) and drinking home made bone broth regularly
(I also know some people will read this and hone in on a few things and be like oh! he just needed some psych drugs, therapy, and exercise! Those can def all be helpful things, but I assure you it was a strange and complicated journey through the mindbody, I still have no sample size other than me, and the methyl-B12 was by far the most helpful even though that largely falls under the pseudo-science perpetuated by people searching for autism cures...)
I hope anyone who suspects they or someone they love has chronic lyme will dig deeper than just reading scholarly review articles. A professional scholar tends to write only about things that they anticipate will advance their career.
In particular, I hope anyone who suspects chronic lyme will meditate on some of the comments on HN written by people who claim to have recovered from chronic lyme or what they suspect was chronic lyme. If you search the web for information on chronic lyme you will encounter a lot of material by people who make a living trying to persuade various segments of the public in one direction or another. (Some of the professional persuaders have MD after their name.) On HN comments in contrast I am satisfied that almost all the substantive comments about chronic lyme are currently not written by professional persuaders.
https://www.healthline.com/health/lyme-disease-chronic-persi...
https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-d...