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Re:Ancient History of Lyme Disease Revealed with Bacterial G... by lkrubner on Sunday July 21, 2019 @07:55PM (#20494464)
Slightly off-topic, but for anyone interested, I did write up my own battle with Lyme, which went on for many, many years, till I found a simple solution:

"How I recovered from Lyme Disease: I fasted for two weeks, no food, just water"

http://www.smashcompany.com/philosophy/how-i-recovered-from-...

Re:Ancient History of Lyme Disease Revealed with Bacterial G... by GiorgioG on Sunday July 21, 2019 @08:47PM (#20494657)
I've been going through something similar for the past 3 years. Finally a neurologist (most of my symptoms have been neurological in nature (brain fog, short memory issues, etc.)) for lyme, Rocky Mountain Spotted Fever. At some point I was bitten by a tick that was carrying RMSF. I was given 2 rounds of doxycycline which seemed to do absolutely nothing. At that point I made an appointment with a "lyme doctor" (yep I can already feel a bunch of you thinking "oh a quack doctor.") The doctor I met believes I have some other related infection (ticks don't just have to give you the gift of a single infectious disease.) Unfortunately there are no FDA approved tests for the infection she suspects I have (bartonella,) and the tests that are available are only 80% accurate and cost $1000 (not covered by insurance.) I opted to skip the test and proceed with a clinical diagnosis. I've been on 3 antibiotics (simultaneously) for the last 2 months and I feel so much better - not 100%, I'd say 85%. I'd have never believed this "quackery" myself if I hadn't spent thousands of dollars on nearly a dozen doctors, and a bunch of tests which yielded nothing.

Ticks are serious business. Be careful out there. The irony is, I'm a software developer that works from home and I rarely poke my head out of the house, save to mow the lawn. How I got bitten by a tick is still a mystery.

I did try fasting for 3 weeks (yep, just water and electrolytes) last fall (before we figured out the root cause of my symptoms.) Unfortunately that didn't help. I will likely try another fast while on these antibiotics to see if it helps resolve my problem(s) permanently.

Re:Ancient History of Lyme Disease Revealed with Bacterial G... by vekker on Monday July 22, 2019 @07:03AM (#20496861)
Are you currently still on the antibiotics? I'm curious what will happen after the treatment. Apparently the parent poster tried antibiotics multiple times as well, not that I want to give false hope...

Also, I am not a native English speaker, but I am not sure about why anyone would immediately think a "lyme doctor" would be a "quack doctor"? Wouldn't a medical doctor specialised in lyme disease (i.e. lyme doctor?) be the most qualified to diagnose & treat lyme disease?

Another question if I may: when/how were you diagnosed? How did you know? This has personal relevance because I recently spotted the signature symptom for stage 1 lyme disease (erythema migrans) and immediately started treatment with doxycycline... really hoping that stops it from progressing.

Re:Ancient History of Lyme Disease Revealed with Bacterial G... by GiorgioG on Monday July 22, 2019 @09:30AM (#20497795)
I am still on the antibiotics. While my doctor hasn't specifically told me how long I'll be on them, I suspect it'll be for at least another 4-6 months.

The traditional medical establishment in the United States doesn't believe in "chronic" tick-borne infections - hence why "lyme doctors" are treated like quacks.

I was diagnosed in May. As far as how did I know? Well, I was tested for almost everything else under the sun: (before a 2nd neurologist ordered the Rocky Mountain Spotted Fever blood test) multiple-sclerosis (nerve conduction study, skin biopsy), rare cancers (carcinoid), mast-cell activation syndrome (on top of my neurological symptoms I also have facial flushing which is totally random and seems to have no obvious trigger(s))

It's been a long journey so far and I have no illusion that I'm cured/symptom free, but the minocycline, rifampin & azithromycin have helped immensely. My short term memory still sucks (it was never great to begin with), but not nearly as bad. My brain fog has lifted, which was my biggest concern. Between my brain fog and memory issues, I was incredibly grumpy - I've actually started to enjoy life again for the first time in 3 years since this started.

Re:Ancient History of Lyme Disease Revealed with Bacterial G... by wellyeah on Monday July 22, 2019 @04:24PM (#20501986)
>Unfortunately there are no FDA approved tests for the infection she suspects I have (bartonella,) and the tests that are available are only 80% accurate and cost $1000 (not covered by insurance.)

FWIW I tested positive for Bartonella via Igenix. IIRC this was treated with Rifampin (not fun) and Bactrim (fine). Unfortunately the side effects of being on these antibiotics long term are pretty real. When you kill all the good bacteria in your gut, the fungus grows wild, so make sure you're addressing that.

Re:Ancient History of Lyme Disease Revealed with Bacterial G... by pmjordan on Monday July 22, 2019 @05:17AM (#20496402)
Fellow chronic Lyme patient here.

I was given 2 rounds of doxycycline which seemed to do absolutely nothing.

1. Doxy is not the worst antibiotic for targeting lyme that's got into the central nervous system, but from personal experience and the doctors that have treated me, it seems Minocycline is preferable. Note that it may seem like you're having a bad reaction to the medication, but this is probably just the Jarisch–Herxheimer reaction. I was told to gradually increase the daily dose to make it more bearable.

2. Once the infection gets to the chronic stages, a single type of antibiotic will at best suppress the infection, it will normally not get you anywhere near a cure. Different doctors will have different go-to combos, but should generally be flexible about it and try different combos if one isn't really working. Again, this should also be influenced by the affected organs based on symptoms. I'm glad you're now getting such a combo, many doctors who don't specialise in Lyme disease will not prescribe that kind of thing even if there's now a decent body of literature that this does work in many cases.

I've been on 3 antibiotics (simultaneously) for the last 2 months and I feel so much better - not 100%, I'd say 85%.

I've been there - be prepared for this potentially being a long slog, depending on severity and affected organs. After first developing symptoms in 2013, I finally got a diagnosis in early 2015. (Backed up by positive test results - Lyme ELISPOT/LTT, the ELISA test shows nothing, apparently it's only about 40% accurate) At that stage I was pretty bad, I have almost no memories from late 2014. The doctor that first diagnosed me got me to a stage where I was symptom-free whenever I was taking antibiotics, but after 2-12 weeks symptoms would return.

I ended up switching doctor in late 2016 as my overall progress seemed to have stagnated. She turned out to be a lot more test-happy than the original guy, and tested for a whole range of other stuff - bacteria, fungal, parasite, viral infections and various other values related to inflammation, nutrition etc. She found that in addition to Lyme disease (2 different strains of Borrelia), my immune system was also in overdrive fighting a bunch of other stuff, which I got treatment for. Plus she switched me to a different antibiotic regime specifically targeting one of my main symptom areas (bladder/prostate). 2 1/2 years later I'm not 100% cured. One of the 2 Borrelia strains I was infected with seems to be gone. The other one is still lingering - I've just relapsed into a mild Lyme episode for the first time after 6 months of not taking anything, so I'm on another 3-antibiotic treatment cycle. The gaps are getting longer, and the symptoms are becoming less severe. My immune system still occasionally goes wild on fighting VZV too (chicken pox virus, once you've had chicken pox it stays in the nervous system) which presumably somehow gets an opportunity to flare up thanks to the Lyme bacteria doing their thing or my immune system generally being in a rough shape after years of infection.

One thing that seems to have helped me is doing regular intense exercise; I've taken up tennis, but anything that gets you properly sweating should do. The recommendation was actually to do regular infrared treatment, but I hated that, and intense exercise seems to work similarly well. The perspiration supposedly helps to get rid of the toxins from the bacteria (live or dying, see Jarisch-Herxheimer reaction) and the spirochete bacteria themselves apparently cope badly with a raised host body temperature. (An early treatment for syphilis, another spirochete, was apparently the high fever produced by contracting malaria. I don't recommend infecting yourself with malaria.) I have no idea how effective it is at those 2 claimed benefits, but it certainly seems to clear the brain fog for 2 days or so.

FWIW, no dietary modifications seem to have made any difference for me; the first doctor made me try a bunch of these but the change after a few months was just that I felt hungry a lot.

Re:Ancient History of Lyme Disease Revealed with Bacterial G... by AcerbicZero on Tuesday July 23, 2019 @06:20PM (#20510747)
I have a friend going through something extremely similar, and it looks like one of the toughest fights I've even seen. I think I'll shoot this over to her, maybe it'll give her some hope, as shes been pretty depressed now that shes in her 2nd year of treatment. Thanks for sharing, and good luck with your recovery!
Re:Ancient History of Lyme Disease Revealed with Bacterial G... by pmjordan on Wednesday July 24, 2019 @03:51AM (#20513107)
Thanks!

My email address is in my profile. In case she wants to get in touch, feel free to pass it on, I'm happy to answer any questions etc.

(This also goes for anyone else reading this who has or suspects they might have Lyme disease, or who has someone close in that position; I'm obviously not a doctor but will do my best to help.)

Re:Ancient History of Lyme Disease Revealed with Bacterial G... by simonebrunozzi on Sunday July 21, 2019 @08:31PM (#20494606)
Wow, it's incredible to read that you've been sick for TWENTY years before finally getting cured by fasting for two weeks.

> I went 2 weeks without food. Just water with a little bit of salt. No food. I took antibiotics the first week but not the second. I felt very sick. The fast ended. I had a vegetarian meal. I fell asleep. I woke up the next day and had a large vegetarian meal. That night I felt funny. The feeling was similar to that moment, if you have a flu, when the fever breaks. With a flu, you get sicker and sicker till a moment the fever breaks and then you know that your immune system has kicked in. That was exactly the feeling that I had then. After 20 years, my immune system had finally kicked in.

On a related note, you might want to take a look at fast-mimicking diets (FMD), and one of his more credible proponents, Dr. Valter Longo. I've met him personally, and read some of the papers and material that he has published. It strongly relates with the last part of your article, in which you are trying to guess why fasting cured you.

Happy to hear it ended well for you. I can't imagine how life has been for those twenty years, on and off antibiotics, never able to understand what the real problem was.

Re:Ancient History of Lyme Disease Revealed with Bacterial G... by cm2012 on Sunday July 21, 2019 @10:24PM (#20494971)
In a related note - my wife had chronic vomiting for 5 years. Almost every meal would make her throw up. We went to general doctors and two gastroenterologists, who gave antacids that made the vomiting worse if anything.

One day I found an amateur website that said the issue was more likely not enough acid, gave ways to test it, and recommended drinking a tablespoon of apple cider vinegar.

My wife's vomiting stopped immediately after one dose. She recurred once or twice in the last 4 years but another dose of AC vinegar fixed it each time. Literally miraculous.

Re:Ancient History of Lyme Disease Revealed with Bacterial G... by amelius on Monday July 22, 2019 @05:29AM (#20496454)
This is a story that I've seen a lot on internet forums. Makes me wonder why doctors haven't caught up and researched it.
Re:Ancient History of Lyme Disease Revealed with Bacterial G... by jliptzin on Sunday July 21, 2019 @11:14PM (#20495111)
Was she not already getting that small amount of vinegar from other sources like salad dressing? Or is it because it was all at once with noting else?
Re:Ancient History of Lyme Disease Revealed with Bacterial G... by cm2012 on Monday July 22, 2019 @10:34AM (#20498304)
I think it's the concentration of the vinegar with no other food/water in the stomach to dilute it.
Re:Ancient History of Lyme Disease Revealed with Bacterial G... by eigenloss on Monday July 22, 2019 @05:16AM (#20496393)
As someone who also suffered through very long-term antibiotic therapy:

Not to invalidate your story, but if your tests for Lyme were negative, it wasn't Lyme (borreliosis). B. burgdorferi is the only thing the medical community will always refer to as Lyme.

Azithromycin, doxycycline, and many antibiotics are almost harmless to coinfections of Lyme that are nonbacterial in nature, e.g. babesiosis, cytauxzoonosis and Powassan virus, to say nothing of the coinfections we don't even know about.

Two weeks without food is pretty extreme, and could have been fatal, but I'm happy it worked for you.

Feel free to email.

Re:Ancient History of Lyme Disease Revealed with Bacterial G... by pmjordan on Monday July 22, 2019 @05:38AM (#20496490)
but if your tests for Lyme were negative, it wasn't Lyme (borreliosis).

Depends on the test. The ELISA test is cheap but extremely unreliable. ELISPOT/LTT seems to be the most reliable antibody test out there, at least for European strains. If the latter also came back negative, the evidence would indeed suggest this wasn't a Lyme infection but something else.