My friend was diagnosed with lyme disease in his mid-20s after years of symptoms similar to your own (brain fog, extreme fatigue, etc.). The hard thing is that even lyme disease itself is a constellation of illnesses, he had to work with mulitple specialists for years to confirm what the issue was and get the proper treatment.

In his case, he is mostly back to normal, albeit gluten intolerant, which will cause his symptoms to redevelop, namely spinal inflammation.

Its hard not to engender helplessness when hearing or dealing with types of issues, but I wish you perserverance in your search for answers, and grace when dealing with your problems.

Did your 30s coincide with the COVID pandemic? I've had a similar experience the last 6 years, and it feels like a combination of aging (I'm 35) and Long COVID. I am trying to get out of the software industry altogether because sitting and looking at a screen all day makes me feel like shit now

Unfortunately I haven't gotten a lot of answers about treatment but just putting it out there, if you don't have a characteristically tick-borne illness like alpha-gal it might be COVID-related.

Signed up to post this. So I have been on this journey with my daughter for the last 7 years, she is now 25, but only got a Lyme diagnosis less than 2 years ago, has been suffering since she was 18. It’s not just ticks, mosquitos and spiders can apparently carry the bacteria (there is not a lot of consensus about the causes of Lyme, there is the bacterial school of thought and a viral theory). This if the fringe of science, theory’s matter but results matter more. My daughter had a range of symptoms, fatigue, body aches, circulation issues her feet would change colour blue, red, purple, brain fog. She had been 5 years on this path trying to deal with this, before the Lyme test was done (we live in nz which lyme is rare, and she likely caught it in Australia which doesn’t acknowledge its existence). Anyway we headed to Germany for hyperthermia treatment. It wasn’t cheap for us, and almost an act of faith in choosing this. I had reservations, at the frontier of medicine everything looks different. People are pursuing options that are unconventional, because the conventional options have been exhausted. At some point everything that is considered mainstream now, once looked unconventional. I know that could be used to justify anything. We spent 3 weeks at St George clinic in Germany.

The theory of Lyme is that is a really slowly replicating bacteria, once every 24 hours vs 20 minutes typical for most. It does respond to antibiotics but the slow replication rate means you would need antibiotics in your system for a much much longer period to have the same number of kill opportunities (it is during replication that bacteria will absorb antibiotics and be killed as I understand it). Roughly you would need antibiotics for 3x24 as long as a typical antibiotic treatment (over 2 years of antibiotics which would ruin the rest of your body). The hyperthermia treatment is intense, it is designed to mimic a fever. One of our bodies approaches to killing bacteria, is getting them hot enough to rupture their cells. It wasnt an easy or a quick fix after treatment, which was disheartening at times. But a year on she has just noticed she is feeling better, has little to no pain and just the other day took a run along the beach. Anyway I just wanted to endorse a plan you were already thinking about. I acknowledge that a chronic health issue is hard, hard in a way that those of us who a generally healthy can’t even comprehend. I wish you all the best

I've been through similar, don't give up trying to find a solution. I've recently found what mine is, and am doing much better now. Everyone is different, be careful with advice on the internet, but at the least it gives you ideas for further investigation. For me it was elevated homocysteine, with a genetic origin. I could get an analysis by uploading my genome to Genetic Genie, but ultimately the homocysteine test was the proof.

fwiw; I had unexplained anxiety, fatigue, poor sleep and cognitive decline as a post-COVID induced histamine intolerance with a few bonus attributes. High amounts of histamine would accumulate in my mast cells then get released in 3-5am, undermining sleep and also inhibiting serotonin.

It took me about four years to fully understand my condition. Hope you figure out what is bothering you. The body is incredibly complex.

You owe it to yourself to learn about Chronic Inflammatory Response Syndrome (CIRS). It can be caused by lyme but is more often due to exposure to water damaged buildings.

It is treatable and the science is backed by peer-reviewed academic papers. https://www.survivingmold.com/legal-resources/publications/p...

Reasonably priced lab testing can be obtained without jumping through insurance hoops: https://www.moldco.com/

I have personally suffered from CIRS-wdb (water damaged building) for decades. By 2012 (age 44) I was so chronically sick with severe neurological, endocrine and digestive symptoms that I could not work and barely slept 3 hours a night for months. Brain fog, "ice pick" pains in the gut, muscular weakness and balance problems were among the many symptoms. It was so bad that I was preparing for the end within a year and was spending my limited time with my wife and young children. Years of medical tests and consults (Cleveland Clinic) found nothing.

Fortunately, lots of googling found medical articles by Dr Ritchie Shoemaker listing many of the same multi-system symptoms. From the late 1990s he identified cohorts of patients with such symptoms and developed effective treatments. I drove out to Maryland and was treated by him from 2012-2013 following the Shoemaker protocol. We spent a substantial amount remediating the water damage in our home. My health improved incrementally to the point where I now work productively and actively mountain bike daily at age 59. I am about 91% recovered and have no doubt that I would have died without treatment. I take maintanence doses of Welchol and Vasoactive Intestinal Peptide (VIP) and avoid water damaged buildings.

I have no financial interest in Moldco or Dr Shoemaker but feel compelled to share my experience with those who seem to be suffering similarly.

I almost did not write this post. Nearly every afflicted person I have shared CIRS info with has ignored it and continued their health decline. I hope that you or someone reading this will take the steps and improve their health.

That's rough. Same symptoms of low testosterone, which a blood test can measure. This can be caused (even in younger men) through daily exposure to endocrine-disrupting chemicals (EDCs) like BPA and phthalates, heavy metals, and pesticides. Poor lifestyle exposures such as chronic stress, lack of sleep, and high ambient air pollution also significantly suppress hormone production.

Re: hypothermia, watch this guy: https://www.youtube.com/watch?v=jwtPtlcNXEs

The poor sleep might be the root cause. I’ve got some of the symptoms that you describe but I’ve always had nasal issues that I think are wrecking my sleep through snoring. That’s my theory anyway so I’m pursuing that.

Unfortunately there are a number of tick-borne illnesses. Eg, Powassan virus is a viral infection that attacks the central nervous system (leading to encephalitis). It can be transmitted within hours or even just 15 minutes of tick attachment.

Another is Alpha Gal. It is a molecule carried in tick saliva that can cause serious allergies to red meat and even dairy. Because the molecule is in the saliva, it can be delivered immediately.

> I’ve been battling unexplained anxiety, fatigue, poor sleep and cognitive decline throughout my 30s.

If it's not severe, it may be simply getting older.

If you think you have long Covid, you should do some research about CIRS (Chronic Inflammation Response Syndrome). It is a condition caused by exposure to toxic mold from water damaged (inside or out) buildings. There is growing evidence that there isn't actually a separate condition for long Covid, but rather it is Covid-triggered CIRS. (Lyme can trigger it too). (Note: only about 25% of people are genetically susceptible to suffering from CIRS)

CIRS causes your body's call-and-response immune system to short circuit; meaning one part detects the problem and the part is supposed to fix it but the part that is supposed to fix it (remove the mycotoxins) doesn't see the problem and does nothing. CIRS causes a lot of side effects, including all the ones mentioned by the GP and many more. If you want to test for toxic mold, you need to test the dust in your space. Some amount of mold is naturally in the air at all times. The dust will show and accumulation of mold over time and show if there is a real problem.

Source: I thought I had long Covid for a long time, until I realized the real problem which was toxic white mold in my house. I threw everything in a dumpster and sold my house and am now on the long slow multi-year process of recovery. If you think you may have it, try pushing Mg, Zinc and Potassium really hard for a few weeks. Take things that naturally bind the bile in your gut (the mycotoxins attach to the bile which is recycled). There are heavier binders that bind everything but I wouldn't start there.

Wrong thread?

Thank you for taking the time to sign up and write this. I'm glad your daughter is feeling better, and I wish her a continued recovery. I will consider this treatment more seriously, but the cost is significant, especially only to hope for results.

I had this starting around the beginning of COVID. Was it COVID? Did I get COVID at all? Plausibly, but not definitively. Did I get it at that time? Almost certainly not as I stayed isolated and got tested whenever I wasn't. It could be aging but I think a lot of people chalk things up to aging that are actually due to non-aging-related causes - you just accumulate more past as you age so you're more likely to have encountered whatever the cause is. I did go camping several times, once in a region known to have Lyme, without being vaccinated, but that was years after I started noticing chronic fatigue. Conclusion: I really don't know.

At least some of my cognitive decline is surely related to my attention span, which is not aging-related at all but more to do with the modern information-flood environment. A few minutes ago I misread "scripted" as "sculpted" in an HN comment and then stopped to reflect why I did that. It wasn't because I can't read, but rather because I was skimming over that comment really, really fast, because that way I can view more comments.

How did you figure this one out and how did you resolve it? Asking for ME!

I had elevated homocysteine, treated it (MTHFR gene, therefore methylated B12 / folate, etc), and that had zero effect on my sleep quality, unfortunately.

Tried B6, every variation of magnesium (including threonate), all the typical sleep hygiene stuff.. nothing mattered.

What did you do about this? Is it at all related to allergy levels? How do you measure your histamine level on a daily basis?

How did you figure this one out and how did you resolve it? Asking for a friend!

Nearly every person you have shared CIRS info with was formally diagnosed with CIRS by a doctor? Or were you the one diagnosing them?

Not just T. Low thyroid hormone levels as well. I just had that diagnosed, after a year or two of feeling “worn out”. I thought it might be T (I’m almost 50 now) but turns out my thyroid was under-active. Relatively easy diagnosis and fix.

This is very helpful for determining if prophylactic treatment is necessary after discovering a tick.

If someone doesn’t notice a tick then they aren’t going to be considering prophylactic treatment anyway. It’s for the cases where ticks are discovered.

I think it's super helpful. Sure it doesn't help with ticks, you don't find, but in my experience it starts to itch eventually even with the tick attached. If it's negative good, if it's positive go see a doctor.

> My understanding is that the ticks only transmit disease after they have been attached long enough to become engorged

This understanding will age like milk.

I think you need to stop overthinking. Yes it can make you sick, but the only thing you can do is be on the lookout for it and be smart about avoiding it. I've had around 4-5 ticks in the last years, my kids and family probably around 15-20, one recently near my ankle that probably could've been avoided if I wasn't wearing short trousers. But anyway nobody ever got sick from it and we live in a region with a high prevalence of tick caused encephalitis. There's a vaccine for that so we're all vaccinated now.

Otherwise just enjoy your life.

And it's relatively easy to get a prescription for since it's a PEP drug for high -er risk sexual activities.

Indeed. Thanks for the pointer. My testosterone level is in a happy range, as are most of my levels.

Chronic stress, now that's an interesting one. I've never regarded myself as stressed. Or, if I am stressed, I'm always stressed and it's just normal. But I see no reason to be stressed, but maybe I am. And I wonder, how much of stress is a cause, or a result. I've taken a year off work. Am I better for it? It's hard to say. I'm yet to find anything that I can say helps. I've only really found things that make it worse. Like alcohol, and sugar. Diabetes? Yeah, I've considered it. I've got 6 months of blood sugar monitoring data, with no discernible correlation between my levels and how I feel. Funny world <3

> My understanding is that the ticks only transmit disease after they have been attached long enough to become engorged. None of the ticks shown were engorged.

I’ve hear stats as long as 24 hours and as short as 30 seconds. One nurse told me that removing ticks by grasping and pulling means they transmit immediately, because you squeeze their contents through their mouths. I no longer believe any of the stats; seems like it could be at any time.

According to the dutch public health institute, the longer the tick is in the body, the bigger the chance of transmission. Early removal also does not prevent lyme, it just reduces the chances.

Next to that, in The Netherlands we have a site to report tick bites and if they had lyme disease or not. It’s good to know if you should be extra vigilant after a bite from a certain area. I think the self-test could be very useful for such sites.

This is one of the things that is oft repeated by my vector disease colleagues -- your infection may not be caused by the tick you found, but by the tick you didn't.

there have been times in my life where this could have saved me a doctors visit, and that's good enough for me

You're the smart one.. Unfortunately I didn't find the tick on time and have been sick with persistent Lyme for over 10 years. Hoping for some kind of solution soon.

I don't mind there being some selection pressure against biting humans.

Yes, thank you! I am a subscriber to his channel, and I was surprised to watch his video. I have mixed feelings about the treatment. It is one of these "very expensive fix everyone is looking for, but results aren't guaranteed" things that makes me suspect of the whole thing. I've read several reports of people who had no results, and very few from people with positive results.

Sometimes a treatment, perhaps especially one like that, you have to believe in. And I don't take paracetamol because every time I've taken it I don't really feel any better, than had I not taken any at all. So if the treatment needs me to believe in it, that THIS TIME, once and for all, that it's finally going to cure me, because I've ponied up 30,000 EUR, so it HAS to work, then I'm probably not the right candidate. Once I went to a spiritual healer who asked me to leave half way through because I wasn't playing along.

I think in that guys case its hypERthermia not hypOthermia since they elevate his temperature. Artificial fever basically.

Easily proven or disproven with a sleep study. You can get home tests too. Wishing you the best!

I’m not sure we are talking about the same virus, but for the version prevalent in northern europe, there’s a vaccine.

Do you drink coffee?

About stress: how's your HRV? Look into sympathetic and parasympathetic nervous system, vagus nerve and it's relation to HRV. It gives you a more objective way to measure stress.

In particular, Garmin smartwatches have a very good measurement and intepretation with their "stress" and "body battery" features.

I wasn't making a scientific statement about whether depopulating the deer will help; the governor of Massachusetts already did. I'm saying that it's pathetic to blame it all on deer and then not eliminate the pointlessly onerous burden on culling their population.

But since you're being needlessly snarky about it (it's not productive to suggest killing "the rabbits and chipmunks and mice and squirrels"), here:

https://pubmed.ncbi.nlm.nih.gov/25118409/

>After hunts were initiated, number and frequency of deer observations in the community were greatly reduced as were resident-reported cases of Lyme disease. Number of resident-reported cases of Lyme disease per 100 households was strongly correlated to deer density in the community. Reducing deer density to 5.1 deer per square kilometer resulted in a 76% reduction in tick abundance, 70% reduction in the entomological risk index, and 80% reduction in resident-reported cases of Lyme disease in the community from before to after a hunt was initiated.

I initially thought about sharing this about stress and didn't, but then I read your post.

That's how I learned I was stressed while working. I have a Garmin watch and everyday I get an alert telling me I had a stressful day.

During the day if I do a little check-in where I observe how I feel, I often notice a lot of muscle tension, especially in the plexus area, and that I stop breathing for extended periods of time. I try to consciously relax, which would work for a few minutes before the tension comes again. I end up being exhausted almost everyday. My watch has been telling me I'm either in "recovery" or "strained" for months.

Stress can be difficult to notice, especially when you're stressed.

It's low when I've got a job, or need a job. Double, when I don't. I have years of data on this.

Yes. I've tried avoiding caffeine during my year off. When I don't (even after weeks of abstinence) I sleep 12-14 hours a night and still need a nap during the day, which is incompatible with having both a day job and something approaching a well-lived life involving laundry. So I drink caffeine, to be compatible with the labour market.

The whole trick to life is that none of this matters and if you can hold it together long enough it’s still enjoyable to be alive and to die.

That must do wonders for antibiotic resistance.

At the same time no tick that I’ve ever removed from a person survived, even without testing it for anything.

I don’t think anyone removes a tick and sets it on its merry way.

Does it matter at this point?

The cards I found close to useless. The tools in the link from the parent poster, which are actually for pets, work much, much better.

And tiny ones are easy to remove with finger nails and some spit. But it requires some skill, do not stress out the ticks while they are attached and be careful to not partially remove it.

(Just had to remove 3 ticks on me I failed to spot after a late night walk yesterday, bigger and medium sized ones with tool, the small one with fingernail)

edit: and found a 4th one, but a tiny one(nymphe), they don't carry lyme disease as only ticks who have previously bitten a infected animal before will have it

I’ve been fortunate that all the ticks I’ve found on myself I discovered before they began feeding because I am very hairy and they tickled my hairs on my legs as they made their way up.

One other I found crawling up my white tshirt. Good reminder to wear light colored clothes when you’re out where ticks are.

Ticks are extremely tough to kill, compared with the myth that some people hold that they can only be drowned (you can obliterate them pretty well with a rock) I'm pretty sure many return to the wild unscathed.

And some even just pull them off and squish them a bit and then throw them down the toilet, bin, outside. Those very likely survive for a new bite.

You need more than weeks of abstinence, friend. Ive generally noticed 1-2 months are necessary to recover from all of the awful side effects of caffeine (from drinking a tiny amount of coffee per day - my body is just very sensitive to it). I urge you to try it.

Have tired ADHD diagnosis?

The “no, never saw a tick” anecdotes help support the obvious concept that a bullseye rash is not required to end up with chronic Lyme.

I usually trap it between two pieces of tape and then put it in a plastic bag and keep it in the freezer for a few weeks in case someone gets sick and I might need it as a sample.

I have no idea if that is actually necessary, but it's easy and I think that probably kills it.

OK, from tomorrow, I will abstain for caffeine until 21st September at the earliest and take a read. Let's see if I will still have a job :)

Considering how often dogs in my area were covered with ticks, I am surprised we never got one as teenagers, we were running or biking in the same place.

30+ years ago we would use ether to remove them, and I enjoyed burning them afterwards, it was so satisfying...

From experience, you might end up with 2nd degree burns and burn the bugger into a hot crispy pile of ash.

> all of the awful side effects of caffeine

If I may ask as a coffee addict, what were some of these that affected you specifically?

(nor is a tick required!)

Now that you say it...

Makes me wonder of what would happen when you'd use the tips of two blank wires connected to a 1.5V battery?

ZAP!

Could be made into a small USB-gadget, to have it always available? Zaptastick!

Just be careful doing this if you have cats as pets.

I have one :) Unmedicated. Side-effects impacted me more than the meds helped.

I don’t have cats but from what I’ve read, you just need to keep them away from it until it dries.

I like this. Better: ZapStick!

What were the side effects? High blood pressure, feeling like a "zombie", sleep getting worse?

I'd try centanafadine and see a top ADHD specialist. There are a lot of variables: molecule, dose, release profile, melatonin timing.

What is worth checking:

* Comorbid anxiety or trauma symptoms (PTSD)

* Hormone imbalance

Just because your blood work is perfect, it doesn't mean all is good. I have hypomagnesemia - the tests were perfect, yet my body needs way more magnesium to function properly.

Ive seen conflicting reports regarding safety of permethrin and cats.

Some say "neurotoxin". Others say "neurotoxin till dried".

Frankly, I'll keep it away in any form. I dont want to harm my cats. Even if it means that I'm a human pincushion to mosquitoes and ticks.

I actually searched for things like that after posting.

It's already a thing*, in many different variations. Some use piezo-electrics, advertised as 'battery free'. And countless other stuff, many with some variation of Zap(p) in their names.

*Sort of, didn't see small 'passive' ones powered by USB.

Edit: Thinking about it, one could abuse and modify one of the countless e-vapes for it? Small enough in most cases, and self-powered.

ZapsTick

BP (manageable), tinnitus (BP related), prostate discharge (due to muscular tension), sleep getting worse as the week would go on until I'd have to stop. Sleep wasn't restful at all, which was the main problem. I'd feel like I'd closed my eyes and become unconscious, rather than actually asleep. I'd wake up in the morning like I'd been kept awake as some kind of torture all night, but with no recollection of it.

I desperately wanted ADHD meds to help, but in the end the juice just wasn't worth the squeeze so I stopped. I tried all 3 or 4 different stims and 2 non-stims.

Thank you for the pointers, I will look into them.

For the stims, I've found that most doctors titrate up the dose way to fast.

For example for methylphenidate, I'd recommend starting on 2.5mg (1/2 the smallest pill) for a week or two, until side effects go away, and then up the dose to 5mg.