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.
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.
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
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.
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.
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.
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.
It took me about four years to fully understand my condition. Hope you figure out what is bothering you. The body is incredibly complex.
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.
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
In particular, Garmin smartwatches have a very good measurement and intepretation with their "stress" and "body battery" features.
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.
If I may ask as a coffee addict, what were some of these that affected you specifically?
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.
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 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.
Tried B6, every variation of magnesium (including threonate), all the typical sleep hygiene stuff.. nothing mattered.
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.
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.
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.
If it's not severe, it may be simply getting older.
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
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
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.
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.