I didn’t discover that ticks were a problem until I was in my mid 20s, and had been rolling around in deer-filled brush for years. Either I got very lucky, or have a chronic tick-borne disease.
I’ve been battling unexplained anxiety, fatigue, poor sleep and cognitive decline throughout my 30s. I’ve had every blood test under the sun, numerous sleep studies and tried every vitamin. I’ve had no answers and no change.
Sometimes, I've believed that it impacts my performance at work. Sometimes I feel like I should be retiring, but I’m not even 40 yet. Sometimes, it's not so bad.
I saw a video on controlled hypothermia the other day, which seems like snake oil. I guess that’s next on my list to try. I feel desperate, but I’m just having to get used to the feeling of desperation, because there appears to be no answer or solution.
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
Thanks for posting that. I'm constantly thinking about lymes disease when my two young daughters play in anything approaching long grass. I'll file this away in my mind for if worst ever did happen.
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.
Recognizable. I try to increase how much of my wage I save, in case I can’t continue working for ever.
My best answer for my own sake is just burnout, exasperated by some underlying depression. I can have good periods when job stress is low and I make good life choices. Incidentally, I had a blood test show borreliosis randomly 10 years ago, but doubt that’s relevant.
If your job is impacting your health, literally do something else. I know it's seemingly flippant but it's real advice.
I left a very high stress job for one that pays less, but has zero stress. Within 1 week I had to come off the blood pressure medicine. Within 2 months I started weaning off the anxiety meds.
It's like I've been looking at life through frosted glass, and it's suddenly clear. I wish I had done this sooner.
The loss of income isn't the end of the world. You can make it work. I did.
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.
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.
It doesn't necessarily have to be white mold either. Anything that generates a persistent immune response can keep it going once it triggered. Like really bad allergies.
Thanks for writing this up. How did you figure out it was toxic white mold, or rather, what tests helped you get there?
I am just offering a different point of view, not disagreeing with the other experiences on this thread.
I d like to think I have fully recovered from confirmed Lyme diagnosis with Doxycycline for 14 days. I had fever and weakness for a week and lowest HRV reading my Fitbit ever recorded (7ms v 50ms avg).
Interestingly, I have a lot of symptoms like anxiety, sleeplessness, and brain fog even today, but I know for a fact I had it even before Lyme. It had peaked during the COVID times when I sat at my desk working over 10 hours on the regular because there was literally nothing else to do.
So at-least in my case it seems COVID was the trigger and Lyme didn't seem to move the needle much either way.
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.
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.
My gf experiences some thing like this sometimes. Seems to correlate without exercise or excitement or eating histamine rich food. She takes pentatop to regulate it with some success. I'm also interested to head about your experience.
How did you figure this one out and how did you resolve it? Asking for ME!
How did you figure this one out and how did you resolve it? Asking for a friend!
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?
Interesting enough; Lyme disease come from ticks that fed on infected mice. Like deer-mice or white footed mice. Rodents are the problem.
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.
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.
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
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 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.
Do you drink coffee?
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.
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.
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 :)
> 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?
Have tired ADHD diagnosis?
I have one :) Unmedicated. Side-effects impacted me more than the meds helped.
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.
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.
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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.
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.
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.
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.
Nearly every person you have shared CIRS info with was formally diagnosed with CIRS by a doctor? Or were you the one diagnosing them?
Did you mean hyperthermia? This whole thread sent me down a rabbit hole (I have several close folks afflicted by Lyme) and while at first glance hyperthermia might seem woo-ish, there is real research being done, particularly on hyperthermia + antibiotics. The chief drawbacks are cost (I'm seeing $30k and up and not usually covered) and strain on the body. Friedrich Douwes pioneered much of this.
Douwes F. Komplextherapie der chronischen Borreliose (Lyme disease) - Ein neuer Therapieansatz: die Antibiotika augmentierte Thermoeradikation (AAT). OM & Ernährung. 2018;164:F10.
Douwes F. The successful antibiotic augmented thermal eradication of chronic lyme disease. Paper presented at the 32nd ESHO Meeting, Berlin, 16–19 May 2018.
I accidentally posted this top level, but intended it to be a reply to your post: https://news.ycombinator.com/item?id=48620008
Re: hypothermia, watch this guy: https://www.youtube.com/watch?v=jwtPtlcNXEs
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.
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.
Easily proven or disproven with a sleep study. You can get home tests too. Wishing you the best!
> 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.
You do get more sensitive to bad lifestyle habits in your 30s, but none of those are normal symptoms attributable to "aging" in your 30s. Really weird when people around this age act like they're just on death's doorstop.
That feels very defeatist, if life only gets worse then I might as well just end it. I prefer to think it's something unexplained and it just shows up more in older people because more things have happened to them so they're more likely to have encountered whatever the cause is.
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.
It's possible. If this is how it is supposed to be, I was thoroughly miss sold my ticket into this life thing. No refunds though, I guess :)
I'm somewhat hesitant to post this publicly but I'm empathetic with where you are at and maybe it will be helpful to you or others so here goes:
I’ve been chasing a similar symptom cluster: low-grade depression, anhedonia, "burnout", fatigue, poor sleep, stress intolerance, low motivation / executive function, loss of positive emotions including the ability to be "attracted" to things or feel affectionate, and low libido.
For years, I thought this was a mental/emotional health issue. But nothing I did seemed to impact it, including less stress and a sabbatical, and I finally started to wonder if it was more physiological than psychological. My symptoms were psychological (ish) but I started to wonder if there were underlying biological causes that amounted to more than "not handling life well, not trying hard enough, etc."
I eventually ran into a functional medicine practitioner who, for the first time ever, described a process that can happen in our bodies that fit my symptoms to a T. I don't have a good summary of it to post but, essentially, inflammation can cause the brain to become chronically fatigued (in the sense of not having the energy it needs), which can lead to hormone problems, which then recursively cause additional brain health issues. I'm doing a poor job describing it but, when it's described to me, it fit what I experienced almost exactly.
FWIW, it was incredibly liberating when I finally had a reason to think maybe this whole thing was something happening to me instead of being caused by me. A hormone specialist described it as: complex hormonal dysfunction secondary to chronic stress and inflammation.
A functional medicine workup found a mix of hormone-utilization issues, thyroid conversion issues, low-ish usable testosterone despite decent total testosterone, low iron availability despite elevated ferritin, and some inflammation markers. I also have a couple genetic variants that may matter in this context: MTHFR and APOE 3/4.
Mold/mycotoxin exposure is another possible contributor in my case. I’m not convinced it’s “the answer,” but testing suggested past exposure and possible ochratoxin involvement, so it’s now part of the differential rather than something I’d dismiss.
Some non-standard labs that they have started looking at in my case: free+total T, SHBG, estradiol, pregnenolone/DHEA-S, free T3/free T4/reverse T3, iron/TIBC/ferritin/transferrin saturation, B12/folate/homocysteine, inflammatory markers, and mold/home-environment testing if the history fits.
At a recent visit with my provider, she mentioned that just the low free T, thyroid, and iron would be enough to knock someone down and feel terrible. And I have other things going on besides that.
I work with Ashley Giles from Origin Medical in Georgetown, Indiana (USA). I believe she can work with people who aren't local. What I appreciate most about Ashley is that she's willing to look at the whole pattern — endocrine, nutrition, inflammation, sleep, stress physiology, and environment together. And she really knows her stuff.
I'm about 10 months into treatment and expect this to be a 2-3 year process to get back to normal. I'm better than I was...I'm at least mostly functional now on a day to day basis. But a lot of my symptoms are still present in one degree or another. So, no magic bullets here.
If anyone wants to discuss: randy@syrings.us
Do you drink coffee?
I've had a reckoning with my caffeine metabolism recently. I fall asleep very easily, like head hits pillow and I'm zonked within a minute. But I often wake up at 3 or 4am and am unable to go back asleep.
What I've learned is that caffeine metabolism goes down with age and sleep gets lighter with age. Even if you can fall asleep easily, the residual caffeine in the middle of the night is enough to wake you out of light sleep. I made a tool to convince myself to cut back: http://jitterdone.com
This was my immediate thought. Very small amounts of daily coffee have caused me significant problems with fatigue etc... Takes 1-2 months to get back to feeling good. Strongly urge anyone who feels tired, lack of focus etc to stop all caffeine intake. As with any drug, you're just chasing the initial boost, and really only getting yourself back to baseline.
Yeah. I asked because I had my own heap of problems with caffeine and even with decaf coffee. This thing is a pile of random bioactive substances that are mostly fine for most people until they aren't.
What you could get away with in your twenties doesn't go unpunished once you're around thirty. And what you could get away with around thirty doesn't go unpunished once you're around forty.
When did you last (1) eat a proper salad with no sugary dressing (2) get up early to exercise (3) achieve a suntan (4) spend a week without caffeine, nicotine, or alcohol? (5) catch a sunrise? (6) wake up at an acceptable hour without an alarm? (7) eat a high fiber meal like a vegetable curry?
Other: Dark, cold, quiet bedroom. Sleep study. Vicious dietary improvement. If all else fails: move and change jobs. If that doesn't fix it, try one of those drug induced purges with ibogaine.
This