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
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 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.
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 accidentally posted this top level, but intended it to be a reply to your post: https://news.ycombinator.com/item?id=48620008
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.
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.
Re: hypothermia, watch this guy: https://www.youtube.com/watch?v=jwtPtlcNXEs
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: [email protected]
> 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.
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.
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.