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Comment by overthemoon | Hacker News Reader

For what it's worth, my wife has ~something~. She hasn't gotten a consistent diagnosis--Fibromyalgia, etc. She tested positive for Lyme at some point. All we know is that she's sore and tired all the time and has mysterious allergic reactions to things, all the things that get chucked into the garbage can of vague diagnoses around which swarm cranks, grifters, and quacks. I appreciated the sensitivity and nuance of this article.

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If memory serves, some diseases can trigger something called Mast Cell Activation, which in effect...makes your body get allergic reactions to tons of things.

I HIGHLY recommend that, if it's in your budget, she make an appointment at the Center for Complex Diseases. They specialize in these sorts of issues. They are also really good at finding potential tick-borne coinfections such as Babesia and Bartonella. These are tricky to culture and they know which labs are best. I believe they are doing tele-health during Covid.

https://www.centerforcomplexdiseases.com/

Note that the CCD is Not Cheap. While you can get insurance reimbursement for some of the doctor visits, it won't cover the whole thing. But I spent 10 years going to 'regular' doctors and I made more progress with them in 5 months than I did in the previous 5 years of medical appointments.

I mention co-infections because the treatment for Lyme (doxycycline) is not as effective with some coinfections. Like I think the treatment for Babesia is clindamycin + some form of quinine. It's a parasite that infects red blood cells, kind of like malaria. So one possibly out of many is your wife could have been treated successfully for Lyme, but still have an underlying active co-infection. That's why seeing the right doctors is so important.

Yeah, my spouse has something like this, and tracing it back, we realized that it all started when she went off a long-term doxycycline treatment for adult acne. We've been trying to get a doctor to get her a new prescription, but many have been cagey because it's an antibiotic and they don't want to have her develop an antibiotic-resistant strain of some other disease in the process. Honestly, I can't imagine it would be any worse than 10 years of a deteriorating life where she can no longer work, or do anymore physical exercise than casually walking 1/4 of a mile. (She was previously a professional dancer, so you can imagine the psychological toll this has had.)

~something~ is one of the worst diagnoses to have.

I had a bad concussion when I was 12 and ever since (I’m 33 now) I’ve had issues. Fatigue is the big one, but I also lost 2 inches of height, my feet shrunk two sizes, and my hands are as small as my mom’s. I’m male. There are other possible symptoms too, like cold hands and feet and too much heat/sunlight making me worthless for the next day or so. As I’m sure you know it can be hard to know which symptoms to group together. Are my cluster headaches related? Who knows.

The only actual treatable aspect of this that they’ve found is my testosterone being too low. Supplementing that helps significantly, but it’s not enough. I personally think my growth hormone levels might be off, but my GP doesn’t know how to run the test for that and endocrinologists are the worst.

I’ve been to Mayo quite a few times. The last time I was there the best guess they had for the testosterone problem was that my body thought it was dying, so it was diverting resources.

I know that we don’t know everything and sometimes you’re out of luck, but it’s still frustrating nonetheless. It’s even worse when they can’t find anything physiological to test for. Before I asked to have my testosterone levels checked they just threw me on antidepressants and called it good. The only thing I was depressed about was being so damned tired all the time.

Is your GP unable to order these tests, or are they contraindicated in your case?

https://www.labcorp.com/resource/growth-hormone-stimulation

Loss of height is common in the elderly due to cartilage loss but is rare among younger people. Have you had any spinal imaging done? And have you had your bone density checked?

He wasn’t able to as their clinic simply doesn’t run any of those tests. I didn’t pursue it further as life/trying to have a baby got in the way, but at some point I’ll pick it back up for my own health if nothing else

No spinal imaging done but I did have a bone density test done, though I was told it was more to get a baseline for the future.

Oddly enough the trans movement has given me a clue. Apparently MtF trans people can have height loss and, if I remember correctly, hand and foot size loss. It could simply be that my testosterone level was low enough to cause that, perhaps because it happened smack dab in the middle of puberty. When I was first tested my levels definitely weren’t trans-level, but that was about 10 years after the accident so maybe my levels were even lower for a while.

It’d be nice to know for sure though.

It doesn't matter whether their clinic runs those tests or not. Any physician should be able to order tests at other labs like Labcorp or Quest Diagnostics.

I guess theoretically he could, but he's probably not used to doing so as the closest one is over 2 hours away.

you should also get checked out for thyroid issues if you have hormonal problems. They can cause some/all of the symptoms you're describing.

I’ve had a full thyroid panel quite a few times. I wouldn’t doubt it’s invoked but it would be more downstream, so to speak. Thanks though.

Has she seen a neurologist? My wife has MS and your description -- minus the positive Lyme test -- reminds me of the period of unexplainable symptoms that eventually led up to seeing a neurologist and getting an MRI and lo and behold lesions on the brain and spine that explained everything

Has your wife considered that her symptoms are PPD (https://ppdassociation.org/diagnosis), i.e. have a psychological cause which can be unconscious?

I had been suffering from unspecific aches, extreme tiredness, insomnia, sore throats, and other non-specific symptoms for the past 8 months. I had to take months of medical leave and went through 10+ doctors, accumulating negative tests and inconsistent diagnoses as I went along. Then, despairing, I read The Mindbody Prescription by Dr. Sarno and realized that my symptoms were due to repressed unconscious emotions. Since starting a free online recovery program a couple of months ago, I've gotten 80% better and I'm planning to resume work in a couple of weeks.

I know this sounds just like more quackery, but I promise you it isn't. There's more and more peer-reviewed research supporting the theory behind PPD, and the track record of long-term recovered patients speaks for itself. Feel free to email me at me [at] bobmichael [dot] io if you or your wife would like to chat more about this.

As a counterpoint, my wife also has a ~~something~~ diagnosis. She's been dealing with it for 10+ years now. She eventually went through 2 or 3 of these types of recovery programs and they did nothing for her. Some of them were even sort of gaslighting, saying that it was all psychological, when it very clearly isn't.

I don't want to diminish what anyone else has gone through, just be sure that you're prepared for yet another treatment to not work if you try something like this. I hope that it does work for those who try it, but it may not, and that can be even more frustrating to someone who has been told by doctor after doctor that "it's all in their head." She tried fixing whatever's in her head, and that also didn't work.

FWIW, a ~something~ that includes severe fatigue and allergic reactions sounds a lot like MCAS + Dysautonomia.

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