SF writer Peter Watts needs help diagnosing mysterious, debilitating illness

But what if it’s lupus?

I hear that guy can be really closed-minded about whether lupus is the correct diagnosis.


The symptoms are obviously caused by exposure to magnetic fields exceeding 10 tesla in intensity.


Ya beat me to it, TooSoon or not :imp:

Ooh, I like that phrase!
I agree too! My white-coated hierophant (who I actually quite like and still receives me yearly for his somewhat Delphic ministrations) missed out on an obvious Lyme disease diagnosis. I fell apart for over three years, thinking that what I suffered was simply what middle age life produced; complete loss of memory, exhaustion, severe joint pain, and anxiety and confusion, until a different set of white coats figured out just what the hell was wrong with me.
My GP wasn’t malicious, he just wasn’t aware of any post 1970 findings on Lyme. He was quite willing to send me to a number of specialists, most also missing an obvious diagnosis. They all had hobby horses and cures, and didn’t help me one bit.
I can’t say studying the internet or pursuing my personal forensic history uncovered my issue. It was more, and younger white-coats that did it for me, but certainly I’ve learned to put little trust in an initial diagnosis and am especially dismissive of attitudes from medical “experts”.


Multiple Sclerosis?


His symptoms sounds immune mediated. I’m betting that a nerve biopsy would get him some answers.

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Eerie. I had something similar going on in the latter part of 2014, with a very debilitating immune response that made my joints inflamed and swollen (knees, elbows, hands), among other symptoms. The pain, the pain!
The doctor sent me to a specialist, who decided to send me to more specialists to rule out Churg-Strauss syndrome. Luckily, I only fit two-thirds of the criteria. Strangely enough, after two months, it passed as quickly as it came. They never did come to a definite conclusion.

Peter - see Dr. Stricker at Union Square Medical Associates in SF - for what it’s worth he treated and cured Amy Tan of her Lyme disease. I currently see the doctor. I had a battery of bizarre symptoms including paralysis, fever; joint pain, intestinal problems and on an on and everyone though I was KOO KOO until I was tested and diagnosed -Lyme has a lot of co-infections with their own weird symptoms

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Worst comment I ever got from my doc, on coming in with weird symptoms; “Wow, sounds like a job for Doctor House!” That was mostly the end of the investigation; no actual diagnostician was consulted.


Peter cannot enter the USA legally.


Oh dangit - when it said SF I thought san francisco - rather than science fiction - derp.

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That makes total sense! I’m local to Watts, so I only skimmed the headline.

Sounds like an autoimmune flare up? Rheumatoid Arthritis maybe?

Sounds like my brother who woke up one day with all his joints swollen and painful. In the intervening decades since, doctors looked at half a dozen STDs and insect transmitted diseases… His problem can sometimes spread to other body parts, like eyeballs. I’m thinking it’s celiac disease, because my celiac symptoms all sprang up suddenly when I was bodybuilding and eating a ton of pasta all day. Some of my symptoms sprang up in mere months.

After 25 years of suffering, I cured myself of over a dozen health problems after going off gluten, and I see lots of these celiac symptoms in my family (father’s side). For instance, my cousin had new hip joints installed at around age forty.

Specific to joints, I spent twenty-five years trying to grow back the cartilage in my left knee after I tore it in high school, and had 90% removed by a surgeon. Well, after going gluten free, my knee recovered before I knew it, and so much cartilage grew back (at age 44) that I tore it again climbing and jumping around mountain boulders for two hours. It hurt to stand or do stairs, and you could hear the chunks clicking and clacking… Six months later I’m running for the first time in 10 years to train for Tough Mudder. That year I did Warrior Dash instead, but being downhill at full speed, after three such contests, I tore the cartilage again.
Rehabbing with bicycling and bodybuilding, it took 20 months before I could run again, and so trained for a half marathon. Well, having no ACL, and fatigue sets in at 6 miles, my knees spent 7 miles all loose and wobbly, and I tore up the cartilage in BOTH knees this time. Oh! And much worse. Sounds like wringing-out celery sticks with every step.
But, the point is, going off gluten has cured me of everything from a cat allergy, wicked hangovers and knee cartilage that won’t grow back. High blood pressure, too.
So, investigate ALL food allergies. Heck, an in-law on my mother’s side loves garlic, but discovered that was causing all her problems all her life. Sucks. I’m Italian and can no longer est pasta! That sucks, too. But, it’s better that I can binge drink without hangovers. Alcoholism, here I come!

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How? I for one can’t get a test except for the most common, and don’t think any test can catch all the food intolerances and sensitivities mediated by all the other immune responses.

Elimination diet? You eliminate everything that could possibly cause an allergy, which pretty much leaves you eating rice, maybe plain chicken, and water for a while. Then you add in every possible problem food, one at a time with some kind of waiting period each time, until you have a reaction to something. I’ve known several new mothers who were advised to go through this process while breastfeeding to figure out why their newborn babies seemed to be allergic to their breastmilk. Sounded pretty awful.

I have a caffeine addiction. I’ve tried titrating myself off it, but another accident, or another asthma attack, and I need to go right back on it. I tend to get nasty caffeine withdrawal headaches during the first couple weeks of any restrictive diet. I still have a lot of trouble balancing caffeine against salicylate-aoidance for my low-sal diet.

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