26 Comments

Hi Paul just saw your substack and thought to mention Dr Jack Kruse ...a retired neurosurgeon, wrote a book called The Leptin Rx. Light/water/magnetism, he's also got a great website you can look over the forum/posts. Best wishes. https://jackkruse.com/my-leptin-prescription/

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Nov 8, 2022Liked by Paul Ingraham

So sorry, dude, really sucks. " A healthy man wants a thousand things, a sick man just one." I'm on a similar quest re: my adult son's undiagnosed leg pain. I call it Project Rabbit Hole... I take a deep breath and go down one everyday (internet)... and when I reach the next level I just see more rabbit holes to choose from...

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Oct 20, 2022Liked by Paul Ingraham

I know you said you aren't answering "have you trieds" so I'll just say re: the pain pings...are they sharp and nasty? I chalk those up to oxalates, which I can reliably see dumping out of my system on a 24 hour urine study or an OAT, dealers' choice.

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Have you looked into the mind body connection? Dr Sarno, somatic therapy, working on healing emotional trauma?

These are the areas I'm exploring now in my quest to heal myself.

Feel better asap!

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Sep 10, 2022Liked by Paul Ingraham

For the butt cramps, try slathering the whole area with lidocaine cream. Then sit on a rolled-up bath towel, which gives good even pressure to all the muscles and nerves (so many nerves bundled right there.). Do not try to go to the toilet, that'll make it worse and you'll end up in a cold sweat on the floor (you probably know that.)

Lidocaine is my friend.

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Sep 6, 2022Liked by Paul Ingraham

Fascinating that your mother shares that one symptom

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Aug 31, 2022Liked by Paul Ingraham

"some posts could seem a bit boring and self-obsessed, and I’m not exactly thrilled about that...

"But this is, by the way, another shitty thing about mystery illness. It’s not just the discomfort with being more vulnerable and needy, it’s the not even having an excuse for it: not a 'good' one, not one that is known."

I've noticed that much well-meaning advice directed toward the ill, especially the "unofficially" ill, amounts to, "Have you considered being less self-absorbed?"

Argh! Yes, we have! Rarely have we gotten absorbed in our frustrating selves with their frustrating problems just for kicks. The world is big and wonderful and filled with things we'd rather be absorbed in -- careers, families, hobbies... But when we can't rely on our own bodies, others can't rely on us, which unsurprisingly obligates us to focus inward, on fixing ourselves. I didn't plan to lose work to sickliness, or to be officially the mom of N kids but unofficially the mom of N + 1 because my body sometimes plays the biggest baby of the bunch. I understand others' boredom with my problems: they're not half as bored of me as I am.

"why rumination may be a common human response... Havinga built-in impulse to think back on failures and analyze what wentwrong may be a powerful aid to adaptive learning and improvement in performance. Individuals who learn from their mistakes viacontinued rumination may succeed better subsequently, and so theimpulse to ruminate after failure may have had a broad advantagein natural selection." And "If the core purpose of rumination is to discover alternatepathways to blocked goals, this would be quite useful and adaptive when goals are attainable but would remain doomed and futilewhen goals are in fact unattainable."

http://assets.csom.umn.edu/assets/166704.pdf    

Between "attainable" and "unattainable" lies uncertainty. The Big Maybe. Not knowing what's attainable. The authors distinguish helpful "action rumination" from unhelpful "state rumination", but what's the diff when the action is "gamble on resolving a poorly-understood long-term sickly state"? 

Have we tried less rumination? Less self-absorption? Yeah, probably. But, Paul... have you tried tubaquatic chakracize yet? ;-P Tuba blasts, I hear, are even more chakra-clearing underwater!

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Ever have a root canal?

Here's a shot-in-the-dark for your symptoms: "The Toxic Tooth"

https://www.amazon.com/dp/0983772827/?coliid=IHXBA2L0ZDN14&colid=1YG73Y9K3RITZ&psc=1&ref_=lv_ov_lig_dp_it

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Aug 25, 2022Liked by Paul Ingraham

As I sit here all depressed about my burny stabby foot (it can reach 9 in pain) and regularly moan about my various neuropathies, I am absolutely horrified and humbled that you have trigeminal pain. Targeting the face is not fair ball 😡 I am so eager for you to find a solution.

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Aug 24, 2022Liked by Paul Ingraham

As always I’m so sorry for what you are going through.

As far as the particular symptoms you just described, it’s like you interviewed me in depth and wrote down all that I said. I’m certain I have the countless other symptoms as well. You put it all so well.

So what’s going on here? People with almost identical lives - there must be a THING. Do you think it is what Jeanne said? Dysautonomia? I’ve been told I have a disregulated nervous system. What is the difference?

The sameness of it all is, label or not, the symptoms are relentless and there is nothing medicine can do. There again, a label would make my inner life more bearable.

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Aug 24, 2022Liked by Paul Ingraham

first, I am terribly sorry you're dealing with this. Second, I had a mystery disease almost identical to what you're describing, with some variations of symptoms. Third, I still have it, but now it has a name- dysautonomia, specifically the type known as neurocardiogenic syncope. There are more than 10 types of dysautonomia.

Thirdly, I'm going to go out on a linb and give you some suggestions-- which I know very well, are soooo annoying to get because most people have no clue or first hand experience but they "read an article " and now they know exactly what you should do

《eyeroll》

So bear with me.

You should really get tested for dysautonomia - you need to get your primary care provider to refer you to someone who can do a tilt table test, usually an arrhythmia specialist.

Dysautonomia is a multi headed beast and sneaks around in your body in disguise which makes it really hard to diagnose. It can be caused by a whole range of things from a viral infection to emotional trauma. most people never are able to identify the exact cause. But it doesn't really matter.

you can email me if you want to talk about it more.

then, have you considered Ehlers Danlos syndrome? it's worth checking out. Another thing that wears a lot of disguises.

have you had an ANA test done? (anti nuclear antibody test) Great idea to get it checked as a baseline - there's obviously SOMETHING WRONG and it's very complex down to the cellular level. Your mitochondria are not well.

Fibromyalgia is probably a given, and should be assumed.

if you want to start deepening your understanding of the nervous system as well as physiology and nutrition I can't recommend highly enough the podcasts and YouTube videos by Dr Andrew Huberman and Dr Rhonda Patrick.

thanks for your bravery on behalf of all chronically unwell people who deal with mystery, illness and "invisible" illness.

Jeanne van den Hurk

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Aug 24, 2022Liked by Paul Ingraham

I am so sorry you’re going through this. I get the line about it not inviting the same response as, I have MS. As someone who also has had chronic pain and lots of weird symptoms, I feel badly that I am sometimes jealous of my brother who has Parkinson’s. People always say he’s inspiring and a hero! I hope you keep writing despite your self/consciousness because I feel less alone.

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