Fighting persistent Lyme disease symptoms | Hacker News Reader

Fighting persistent Lyme disease symptoms

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148 pointssimonebrunozzi110 comments

My undergraduate work was in microbiology. While I'm now a programmer, I've always been in awe of the microbial world and how it interfaces with humans.

I've developed a theory over the years that many (if not all) misunderstood disorders could be caused by yet discovered virus and or bacteria.

So many people develop bazaar conditions seemingly out of nowhere, that science simply doesn't have an answer for yet. For example - polymyositis/dermatomyositis. Theories abound, but so far none of them point concretely toward infection. I believe (but can't prove) that diseases like this could be caused by infections.

It's a scary proposition that a random bug bite might be enough to alter the course of your life. But I would rather we start discussing this as a very real possibility and not a hypochondriac's way of thinking.

That's the exciting thing about biology - despite the amazing advances that have happened in the past few decades, we've barely begun to understand human biology and disease processes.

I think back to the discovery of helicobacter pylori as the disease causing organism for a majority of ulcers. Before that it was always blamed on diet and stress (which probably play some factor). Amazing that a simple antibiotic regimen could cure many people of ulcers was a complete paradigm shift.

at the same time how do we reconcile that a majority of the world harbors h. pylori and doesn't suffer from ulcers? From what I understand, there will always be "good" and "bad" bacteria inside us, the important part is the balance between the two. If antibiotics do knock out an h.pylori "infection" that is causing ulcers that's great, but what about the other bacteria that the antibiotics might be affecting? Will that offset the scales in another undesirable way?

Exactly why I became a programmer - biology is a lot of messy, unpredictable processes we have way too little data on. My favorite MD's are the ones who smile at the phrase 'There's a reason we call it "practicing" medicine' - and now, hell I can't even figure out the side effects in modern technical stacks :-(

I do agree, assuming that sicknesses that we don't understand always comes from people's mind is assuming that we have a full understanding of human, which is obviously false.

This is also very disrespectful of what people are living through and feeling to tell them that they are making it all up without, at least, any proof...

PBS's Journey to the Microcosmos on Youtube may be up your alley.

https://www.youtube.com/channel/UCBbnbBWJtwsf0jLGUwX5Q3g/vid...

I too share a fascination with biology. I think another common occurrence is unique or undiscovered genetic variants causing subtle dysfunction in ways that haven't been diagnosed across the population.

Epigenetic is quite interesing too, especially the inherited part that could mean that the way some of the genes are expresses could be influenced by the experience of ancestors for example.

https://en.m.wikipedia.org/wiki/Epigenetics

I've lived in a tick infested area (Ozark Mountains) for 25 years now and get bit at least a 100 times a year (probably a lot more, but I don't keep count).

The trick to avoiding Lyme disease is to do a "tick check" everyday and get them off of you asap. It helps a lot to treat clothes with permethrin but you'll still get a few bites if you're out where they're thick.

Here's a link to video I made last year about killing ticks in my yard:

https://youtu.be/TFVDv8swzxQ

Me too! I just picked off a couple of ticks this evening after woodland mushroom picking. My region is endemic for Lyme disease. I'm not concerned because the tick must be attached for 36-48 hours for Lyme disease to vector. Wash clothes immediately after being outdoors and have a shower check. Having a willing partner makes it more effective and fun.

Don’t be so sure about that 36-48 number. In upstate NY I felt a bite on my leg; checked the spot and found nothing there. But I ended up with the ring around that exact spot all the same...

You’re unlikely to feel a tick bite while they’re attached, their saliva provides local pain relief.

I thought maybe it was the sensation of the tick detaching/jumping off which I felt, to explain the situation.

But I had only been outdoors a few hours by the time I felt something, so the total time of exposure would be <6 hours, I estimate.

Weird, both times I've been bitten it's felt like a really bad sunburn that just continues ramping.

Are you allergic to mosquito bites? I have an allergy to their anti-coagulant or their local anesthetic. When a mosquito latches on, it starts burning, and afterwards, the swelling is as big as a US quarter coin.

I have similar reactions to ticks. The moment they latch on and start working, it starts a painful burning sensation.

Luckily Lyme disease appears to be very rare in the Ozarks: https://www.cdc.gov/lyme/stats/maps.html

But not Rocky Mountain Spotted Fever. I've had 2 family members get RMSF in the last 2 years.

https://www.cdc.gov/rmsf/stats/index.html

The map shows cases, not the probability to contract Lyme's if you live there. Ozarks seems to be not very densely populated area.

I live in MA, and these pesky ticks occur everywhere there're deers. They are called deer ticks there.

One of my neighbors kids got it here. Had the classic ring around the bite on his stomach.

Wow, that is horrific. I don't know how that is tolerable! I had no idea you could have a yard so full of ticks as that. Super interesting, thanks for sharing!

Yeah, it was pretty bad here last year. I'd let the leaf matter from the previous autumn and didn't mow enough that spring to knock them down in our yard.

And our home is surrounded by public land (Army Corps) that's all forested. So there are a lot deer and other forest critters that visit us daily and bring them in.

This year I got on top of cleaning up our yard, and keeping the grass short so it hasn't been near as bad. I did end up spraying some bug killer right around the house and under our decks. As a result of all that I've not seen a tick on me from any of the spaces shown in the video I made last Spring.

Still have a few "chiggers" out there though, but those can be killed off easy with diatomaceous earth in the early Spring so I'll lay some of that down again next year. I did it about 6-7 years ago and it knocked them down until this year, and it's still not near as bad as it was back then. We have some blackberry and raspberry bushes growing out there and they were covering my shoes and marching up my pant legs when I was picking berries back then.

Get some chickens and a coop. Let the chickens free roam. They'll eat the ticks. You can eat their eggs.

I have chickens, but can't really let them roam. We have fox and coyotes living around us and they've decimated our little flock when I did that. Right now I let them out of their pen for about an hour every night but that's not near enough time for them to make a dent in the ticks.

Do you have a dog? If not get a donkey to protect the chickens.

Growing up in Indiana, I definitely had my fair share of pruning ticks off my body, but I have never seen as many ticks as in that video.

"The trick to avoiding Lyme disease is to do a "tick check" everyday and get them off of you asap."

I wouldn't be so confident about the effectiveness of tick checks.

Baby ticks can be smaller than the period at the end of a sentence, and can still infect you with Lyme disease. They are very difficult to spot, especially if they're under your hair on your scalp, for instance. It's doubly difficult if you don't have a partner that's willing to thoroughly look over every part of your body that you can't check yourself.

If you watch that video I linked to you'll see a lot of pretty tiny ticks.

Concern over inadequate, infrequent, or non-existent tick checks is why my children do not attend any sort of sleep-away wilderness camps.

I don't blame you. Here in the Ozarks hiking and camping in the forests is something we locals do in the cool months, from the beginning of October to the end of March the next year. After that we hang out at the lakes, streams, and swimming holes.

I only venture into the forests in the warm months when I must and I try to wear clothes treated with permethrin when I do. I not a big fan of wearing poisoned clothes but that stuff does work very well.

When I was a kid my mother gave us kids a tick check every evening when we came inside and tossed our clothes in the washing machine.

Every kid's mom's did that around here. If you spent the night at a friends you'd be getting tick checked :D

When we got to be around 10 years old we had to do the checks ourselves, so it's really a habit now.

You could just select a camp where ticks aren't a concern.

> You could just select a camp where ticks aren't a concern.

No problem, that rules out most of the US and Europe:

* https://www.cdc.gov/ticks/geographic_distribution.html

* https://ecdc.europa.eu/en/disease-vectors/surveillance-and-d...

I don't worry about ticks one bit in the Mojave, no annoying mosquitoes either. Maybe there's winter camp near Joshua Tree?

I lived in So California for around 14 years and spent a lot of time hiking in the Sequoias and Tehachapis and the only tick I ever saw was one that jumped on me while hiking around Castiac Lake.

Clear this up for me...your tip to avoid Lyme disease is to remove any found ticks ASAP, but you say you still get bit 100+ times a year. Is it not true that getting bitten by an infected tick is "game over in the threat model"?

In most cases, the tick must be attached for 36 to 48 hours or more before the Lyme disease bacterium can be transmitted.

https://www.cdc.gov/lyme/transmission/index.html

We're taught this in med school. Along with NOT using flame to remove them and instead using something like tweezers while preserving the tick (for identification).

That page doesn't cite any sources, so it's not really any more credible than any other random blog. I would consider this to be more credible: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278789/

More importantly though, Lyme is just one of over a dozen tick-borne illnesses, some of which can be transmitted in as little as 15 minutes.

“That page” is from the Center for Disease Control — a division of the US Dept of Health and Human Services. Credibility is subjective, but I would say it is in fact more credible than a random blog.

In many cases, the CDC is the source (or at least funds them).

OK, but why would you trust the recommendation if you don't know why they're making it?

Because rarely do we get accurate descriptions of the why behind most advice. Trusting credible people and institutions is a necessity unless you're planning on doing foundational research for everything in your life.

The game over is for encephalitis, since that gets transmitted by saliva. Thankfully encephalitis is much rarer, and can be vaccinated against if you live in a tick-infested area.

As the other poster said, borreliosis/Lyme takes much longer to infect you on average, so daily tick checks are an effective borreliosis prevention measure.

And how long til the black legged tick just becomes resistant to permethrin?

Not before deer themselves start using it en masse.

What about clothing? If you're covered head to toe, can they still get you?

Wear light colored clothes, including pants (long sleeves are less important). Tuck your pants into your socks. Treat your clothes with permethrin (permethrin treatments will persist across several washings) and treat your skin with picardin.

I spend a lot of time in the woods, in tick prone areas, and have a lot of success with the methods described.

In my experience they prefer to get under clothing, especially in tight spaces like between you and the waistband of your underwear, or a hatband, etc. They’re small and light enough that it’s hard to perceive the difference between a tick and your clothing rubbing against your body when they’re moving.

Depends on what you're covered in. A hazmat suit--probably not, but otherwise yes. One trick is tuck your pants into your socks and coat your clothes in pyrethrin.

Just yesterday lkrubner posted their multi-year battle with lyme disease. I thought it was a pretty interesting read:

> 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-...

https://news.ycombinator.com/item?id=20494464

That was staggeringly non scientific, and the body of the article readily admits that he was not diagnosed with Lyme disease, AND that he's also not sure if it was lyme disease, basing it on the idea that getting bit by a tick = lyme disease

It's a personal anecdote of an individual's experience. When you are at your wits end with an illness and doctors have no answer for you, then it's natural to want to try stuff with very little science behind it. It's all you have. The alternative is to do nothing.

Also, Chronic Lyme is notoriously difficult to diagnose conclusively. The diagnoses that we do have are not widely accepted.

>Also, Chronic Lyme is notoriously difficult to diagnose conclusively.

That's probably because it doesn't exist...

"Chronic Lyme" is notoriously difficult to diagnose because there is very little evidence that it is a real illness. While there is some research on the subject, the medical community still widely believes that chronic lyme is Not A Thing.

You often find chronic lyme being diagnosed and "treated" by alternative medical practictioners, homeopaths, naturalpaths, etc who then prescribe a wide array of untested treatments, batteries of blood tests and panels of ELISA antigen screens which are so cross-reactive that just about anything will show up. More often than not patients are being swindled out of vast sums of money by these alternative "treatments". A quote from the GP article shows exactly this situation:

> I’ve gobbled up herbal tonics, CBD oil, a universe of different probiotics, antibiotics, anti-parasitics, and an endless array of supplements promising myriad purported benefits. Most provided little, if any, comfort.

> [...] many people with Lyme flock to “Lyme literate” doctors (LLMDs), who, citing the unreliability of Lyme testing, are willing to make a diagnosis based exclusively on symptoms. [...] With no scientific consensus on what causes persistent symptoms and how to treat them, such options aren’t covered by insurance, leaving people like me to fund treatment entirely out of pocket. I’ve visited several LLMDs with mixed results. [...] Finding a trustworthy LLMD can be difficult and expensive for Lyme patients. The LLMDs I consulted in New York offered initial consultations ranging from $800 to $2,000, with each follow-up visit costing anywhere between $300 and $500 each.

It's not to say the symptoms are not real, but they are far more likely to be fibromyalgia or similar than a mysterious chronic infection of lyme which is untreatable. Articles like the above and the GP do not help the situation, and people end up believing random woo on the internet than their medical providers.

This response misses the point of the article and perpetuates the same attitude that has caused the author and many others so much suffering. The medical community is starting to recognize that there is a gap in knowledge, diagnosis power, treatment options, and general understanding regarding PTLDS. Many of these people don't seek alternative treatments for the hell of it, they do it when doctors have dismissive attitudes like yours.

I left a reply on the OP (before seeing this), which links to NIH, CDC and a review of the subject: https://news.ycombinator.com/item?id=20511244

It's not that the symptoms don't exist. It's that the symptoms are almost certainly auto-immune or neurological in nature. There is nothing "chronic infection" about the situation, and thus any attempt to treat it with extended anti-biotics, probiotics, diet restriction, etc are almost certainly destined to fail.

Patients need to spend more time listening to rheumatologists and less time listening to "Lyme Literate" providers selling uninsured woo at $2000 a pop.

I don't know whether chronic Lyme is a thing or is not a thing. But there is something going on and medicine doesn't have an answer for it currently. Fibromyalgia is a useless diagnosis. Most of the time docs don't know what's going on so they just a slap a label of CSF or fibromyalgia on it. It means nothing other than you seem to have these list of symptoms.

LLMDs seem to get much better results than traditional docs for people struggling with these symptoms (just based on a bunch of anecdotes that I've heard, not a study). They may have the pathology wrong but for the sufferer it doesn't matter as long as their condition is improving.

Autophagy cures a staggering number of chronic illnesses and infections.

Funny how he only mentions that his blood work was positive for Lyme disease after the first round of antibiotics, and then fails to mention the status after the second treatment.

I'm guessing it was negative after that, so his entire tirade is about asking doctors for antibiotics when there's nothing to indicate that they have Lyme disease other than the patient's own opinion.

The article mentions how unreliable testing for Lyme is.

Pretty interesting read. I have similar symptoms, which were linked to taking an antibiotic for a kidney infection. I can honestly relate to how this guy feels.

I honestly have seen docs from top hospitals, mayo, rush, northwestern + more and everyone has a different theory and just throws meds at me to try. I just try to manage on my own, which gets really difficult.

I guess I just wish doctors would be more understanding and open about goals/treatments and communicate better especially since patients with chronic symptoms tend to know more than your average patient.

The scary thing is that tick-borne illnesses have exploded even within NYC in the last 3 or 4 years. I got bitten looking for morels this spring in one of the NYC parks, and even though I got the tick off within an hour and haven’t experienced any symptoms it still makes me nervous that I haven’t taken the 21 days of doxycycline.

I really wouldn't worry about that. You got it off fast enough to not worry.

Tick-borne illnesses can be transmitted in as little as 15 minutes, so it's hard to say whether it was fast enough or not.

Yeah but it was in the Spring you got bit and you got the tick off plenty fast enough. And not all ticks carry diseases, so try to keep that in mind too.

I'm not exaggerating when I say I have been tick bit at least a 1000 times over the past 10-15 years and I've never gotten sick from it so I have to think you've made it clear out of those woods after a couple months now and have nothing at all to worry about.

Its getting scary out there, my wife has basically banned us going hiking esp in Spring when the nymph ticks are tiny. Going to the movies never looked so good.

Yea, it seems like there are so many now! We've also stopped hiking. Our dogs would just be covered if they went at all off the trail.

Are nymph ticks even capable of breaking through human skin?

Yes, they are the main problem: Nymphal ticks cause most cases of Lyme disease. Because nymphs are as small as poppy seeds and their bite is painless, people often don’t realize they have been bitten. Adult ticks can also infect humans, but are easier to spot and remove.

https://www.lymedisease.org/lyme-basics/ticks/about-ticks/

"“Information related to disease outcome is not collected by states as part of routine disease surveillance, which makes it more difficult to quantify,” a CDC spokesperson told me."

How is this okay? Serious question. I cannot imagine a single reason why this would become standard policy.

Presumably because it would require actively polling patients to monitor their outcomes. Its quite common that you don’t hear much from those who get better, only from those who continue to seek treatment. And of those who stop seeking treatment you don’t know how many are actually better either.

I think you are right, this might be the main reason.

No, because that reason would apply to any and all diseases that are currently polled and where patients get better. But we still poll those people for there 1 and 5 year mortality rates.

The absence of a vaccine is a tragedy: https://www.nytimes.com/2018/08/14/health/lyme-disease-vacci....

There is some progress: https://www.theguardian.com/science/2019/jul/20/lyme-disease..., but: "The current leader is Vienna-based biotech Valneva, which is developing a vaccine that can protect against all six most common strains of Lyme disease in the northern hemisphere, and is currently in an ongoing Phase II clinical trial. If everything goes according to plan, this vaccine could be licensed commercially in five years."

there is some postulation that the unrecognized chronic Lyme condition is an autoimmune response that lingers after the infection is gone. I so, I don't know if I want to be an early adopter of that vaccine.

As that article mentions, there already is a vaccine (LYMERix). It hasn't been widely deployed, largely thanks to anti-vaccine paranoia.

And the fact that a subset of the population turns out to have a genotype that made Lymerix a problem for them;

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/

But characterizing the people who claimed exactly these symptoms after getting the vaccine as crazy anti-vaxxers because science is easier.

If someone wants to read some real medical texts on the subject, I would encourage them to read the following:

NIH: https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-d...

CDC: https://www.cdc.gov/lyme/postlds/index.html

Lantos, Paul M. "Chronic lyme disease." Infectious Disease Clinics 29.2 (2015): 325-340. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/

> The CLD controversy does not, however, straddle a simple divide between 2 opposed scientific factions. Within the scientific community, the concept of CLD has for the most part been rejected. Clinical practice guidelines from numerous North American and European medical societies discourage the diagnosis of CLD and recommend against treating patients with prolonged or repeated antibiotic courses 1-21

> Many patients referred for Lyme disease are ultimately found to have a rheumatologic or neurologic diagnosis. Rheumatologic diagnoses commonly misdiagnosed as Lyme disease include osteoarthritis, rheumatoid arthritis, degenerative diseases of the spine, and spondyloarthropathies.26,27,41 Some patients are found to have neurologic diseases, including multiple sclerosis, demyelinating diseases, amyotrophic lateral sclerosis, neuropathies, and dementia.27 Some CLD advocates have argued that these various conditions are simply manifestations of Lyme disease,24,42–44 but these hypotheses are untenable

In short, there is clearly evidence that people feel symptoms following Lyme Disease, but there is essentially zero evidence that these symptoms are some kind of prolonged, chronic infection that remains impervious to treatment. Extended courses of antibiotics do not improve the situation (and can fatally make it worse), and all the various woo (as mentioned in the article) do not help either.

"Chronic Lyme" is far more likely to be auto-immune (rheumatologic) or neurological in nature. It may be triggered by a lyme infection, just like it can be triggered by other non-lyme infections. Auto-immune responses are commonly triggered by severe bacterial or viral infections, and can persist/linger far after the infection itself has cleared up. But the concept of a "chronic" bacterial lyme infection has little to no medical bearing.

The fact that this continues is largel attributed to A) auto-immune disorders being difficult to diagnose and treat due to their unique nature and B) hucksters, con-artists, and snake-oil salesmen hawking the latest woo to patients desperately trying to solve their problems. And probably C) a general movement towars believeing random blogs (like the OP!) over medical providers, on the basis of "Big Pharma" or other general conspiracy theories.

> But the concept of a "chronic" bacterial lyme infection has little to no medical bearing.

From your first link: "In 2017, scientists at the Tulane National Primate Research Centers, funded in part by an NIH research resources grant, reported evidence of persistent and metabolically active B. burgdorferi after antibiotic treatment in rhesus macaques"

From your second link, to the CDC: "Other experts hypothesize that PTLDS results from a persistent but difficult to detect infection".

Just a quick reminder -- if you want people to actually read your stuff, medium is the wrong place.

There is no way I'm signing up for whatever it is they want you to sign up for.

It's interesting how split the comments here are. Lots of grey (downvoted) comments

Bite with red ring surrounding bite site? Get treatment at once.

Note if it wasn't for the alt-health fear of vaccinations, we would have a safe and effective vaccine for Lyme disease and other tick-borne diseases.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/

So now you get people sick from Lyme going to alt-health practitioners who prevented them from preventing themselves from getting the disease.

Sounds like a good business model for alt-health practitioners!

Not necessarily the same alt-health people?

What I find particularly annoying is we had a vaccine for the North American strain of Lyme Disease, but no one makes it anymore for humans!

https://www.vox.com/science-and-health/2018/5/7/17314716/lym...

Something about this smells fishy. Informing that [Chronic Lyme as a concept is dubious at best](https://sciencebasedmedicine.org/fake-diagnoses-not-fake-dis...), this sounds a lot like people worried about "whole-body Candida infections" or Wi-Fi poisoning or whatnot. Even if the symptoms are real, they could be a result from the nocebo effect or some other untreated illness.

All of this on top of medium blogs being able to be made by anybody sets off my pseudo-science alarms.

Ill-defined and/or poorly understood diseases like this are a magnet for cranks and grifters, from "Lyme-literate" doctors who don't take insurance and prescribe muscle relaxants and antibiotics until you run out of money or ignorant bloggers hawking fake science.

There's a lot of noise re "Chronic Lyme", whatever that might be. That being said, ~something~ is going on. My wife tested positive for Lyme, went on a round of antibiotics, and the symptoms didn't go away. She continues to suffer fatigue and chronic pain.

There's another tick-born illness that makes people allergic to mammal proteins. Have her abstain from all mammal products for some time to see if the situation improves.

https://www.mayoclinic.org/diseases-conditions/alpha-gal-syn...

And he sure is branding himself well! All the pictures are of him looking pensive out in nature.

Yeah, totally. Now that the instagram influencer market is fading, chronic disease is the new bandwagon pathway to internet success.

I’ve heard a lot of success stories of treating Lyme disease with PEMF technology. For those unfamiliar, it is a Tesla-coil emitting pulsed electric magnetic frequencies. Pretty interesting stuff.

What's the mechanism of action? Has there been a double blind study? Tesla coils for treating illnesses sets off all kinds of snakeoil alarms in my head.

> The author has spent a decade fighting persistent Lyme disease symptoms—and convincing those who don’t believe him that his illness is real

It is real. An illness caused by psychology is no less real than an illness caused by physiology.

Look up the work of John Sarno. You may be amazed that seemingly mysterious diseases which defy diagnosis can be cured by reading a book or watching a few lectures on YouTube.

>I’ve personally found that an anti-inflammatory diet that eliminates caffeine, dairy, grains, and sugar

Me too! I don't (think I) have Lyme though. I had sinus headaches my whole life as well as an array of digestion issues. Cutting out gluten helped a ton, but I kept getting sinus headaches, so I kept identifying and cutting out food. These days I don't eat gluten, sugar, caffeine, sodium nitrites, and msg.

My brother is diagnosed with celiac disease. I cut out gluten before going to the doctor, so I couldn't be diagnosed easily. I feel largely the same way as OP though. The medical system doesn't know jack about this disease. There are no studies about sinus headaches and celiacs, even though there are plenty of reports pairing the two. My doctors never suggested this. They would give me Flonase (treat the symptom!). I told them I had issues with xyz foods and would be told to not eat those (thanks, duh). Never an attempt to figure things out with me.

I've met other people with weird auto immune issues. They're really mysteries. Lyme is actually a big fear of mine. I hear some people develop a meat allergy and that is a major part of my diet right now.

Perfumes and industrial solvents are the worst for me. I was about 30 before I figured that out. I'd go out on a date with a woman and end up feeling like pure crap from all the scented stuff they and I slathered on before the date. And I'd get sick feeling at work where we used solvents like paint thinners.

For years I thought I must have some weird psychosomatic bullshit going on. The one thing that made be feel better was taking a walk in the forest and that added to psychosomatic theory I worried about because I felt like I was convincing myself that work and socializing were making me sick.

When I was around 30 years old I told my mother about it and she offered I might be "chemically sensitive". So I started paying attention to my exposure to solvents, perfumes, etc and sure enough there was an absolute connection. And the hikes in the forest with fresh air helped clear that crap out of my system.

Since then I've avoided people and places where I'll get exposed to that stuff and I've felt great for the past 30 years. I can actually endure a bit of exposure now without getting sickened, whereas before it only took a few minutes for headaches and nausea to start kicking in.

Did you follow an elimination diet to find out what you were sensitive to, or was it obvious? I'm considering an elimination diet but everything I read about a diet plan are different.

Initially, yes. You're supposed to eat only chicken and rice for a month or two, see how you feel, then add things back in. I was a broke college student at the time, so I did a deli meat and rice diet. I felt a lot better. In hindsight it was kind of stupid since deli meats have sodium nitrites which is a trigger for me, but I still felt scores better.

It took me about 5 years, from 23 to 28 to identify everything. It was a lot of "I got a headache, what did I eat, what were the ingredients", then correlating that over a long period, then testing what ingredient I isolated. For sugar and caffeine it was also a conscious choice to try cutting them out, I think those were more withdrawal situations than the other ones.

An example, I was eating at a gluten free restaurant regularly. No gluten means I'm good, yea? Still getting sinus headaches though. Maybe I'm going crazy, so I ask them what they think. He points out the sodium nitrite in the pepperoni. Correlated that with bacon, other deli meats, "uncured" things that have celery powder instead (contains sodium nitrite!). Then there is the sauce, tomato has glutamate, also tomato sauce often has sugar, these were a different time scale of headache though.

Cutting out sugar was by far the hardest. I went back and forth on it many times. I eventually got sick of the full withdrawal when cutting it out fully and decided to not start again.

Most people asking about this have digestion issues. These are usually caused by FODMAPs [1]. I had digestion issues with gluten and high fructose foods (fructose malabsorption). My brother is lactose intolerant. If that's what you're looking to isolate I would start with those.

Good luck! I highly recommend giving it a shot. Changing my diet changed my life. It's not true for everyone but all of my health issues were coming from what I was eating.

1. https://en.wikipedia.org/wiki/FODMAP#Sources_in_the_diet

Issues with deli meats could also point to histamine issues and mast cell activation syndrome. I'm not saying it applied to your case but perhaps it's something for others to be aware of.

see if cutting out corn has any benefit for you

I'm fine eating corn flour and corn chips.

I've done a lot of research on tick-borne, as well as interviewing others, and my own personal experience.

My protocol for being in tick areas is now as follows:

* No sugar, including "stray" sugar from processed food, like "cane syrup", "apple juice", etc.

* No processed food that digests fast and floods my body with nutrients, e.g. bread, cereal, etc.

* Light diet, intermittent fasting.

* No coffee.

* Lots of fresh garlic.

* Frequent tick checks.

* If I get bitten, no sweets of any kind, including fruit, for a few days.

* If bitten by the smaller species, and it's on long enough to leave a red mark, 2 days of antibiotics right away.

> 2 days of antibiotics right away.

I wonder if this is actually wise, given antibiotic overuse/resistance. Although, I suppose the downside would be for society, not you.

Every animal in factory farms is given antibiotics.

2-day antibiotics doses are commonly prescribed, and in fact as Lyme prophylacsis too.

> Every animal in factory farms is given antibiotics.

• This practice is absolutely terrible.

• It isn't quite as bad, as animals usually (!) breed diseases that are harmful to animals rather than humans.

I'm leery about rather diet makes much of a difference. Ticks are attracted to heat and CO2 and will jump on anything moving by. I've never met anyone here who repels ticks.

Take a look at this video.

https://youtu.be/TFVDv8swzxQ

I'm dragging a bath towel around my front yard and there are hundreds of small ticks attached to it.

It's not for the ticks, it's for the bacteria. The diet is for after a found tick bite. The idea is to not feed the bacteria with abundance of free nutrients in the system.

Thanks for the video, very informative.

It’s interesting to me that the dietary part is almost exactly a description of the diet that greatly reduces psoriasis symptoms for me.

Why no coffee?

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