Thread by @K_Thomas_Ross

@ajschanfield If you are going to feed me the punchlines, we ought to take the act on the road. Though that would make me the ‘straight man’, wouldn't it? I’m definitely not straight.

@ajschanfield Thanks, yes, I'm planning a book, but not a comedy. And my numerous medical misfortunates will be only one minor chapter. The central point would be to change the system. You wouldn't believe:

@ajschanfield 1) Went to a doctor 8x w/ severe diarrhea. He Rx'ed anti-depressants & sent me to a Shrink. Before the Web, I had to figure out it was Ulcerative Colitis, and refer myself to a Gastro;

@ajschanfield 2) I have five other diagnosed autoimmune conditions. I had to self-diagnosed all but 2. Then I go to an expert, who says, “of course you have it”.

@ajschanfield 3) In 1992 I was hit in a multi-car pileup. My primary and an Orthopedic said I was fine. I endured 15 years of pain and chiropractic, a lot of wasted money and time. Then a primary sent me for an MRI – 3 ruptured discs, made worse by manipulation.

@ajschanfield 4) Because of all those conditions, & others, I take numerous meds. Doctors don’t the know the most elementary basics about drug-drug interactions (DDI’s). Including the warnings written on those med package inserts. They pile on drug after drug, w/ no consideration for DDI’s.

@ajschanfield In fact, they Rx drugs to deal w/ the side effects of other drugs – the Prescribing Cascade is the official term. You know things are bad when they give a formal name to a very common mistake by doctors. DDI’s kill 125K & hospitalize 1MM in the US alone, due to pure ignorance.

@ajschanfield 5) In 2017 they almost killed me twice. They succeeded in nearly blinding me in one eye. The package insert has a severe warning that mixing Alfuzosin with “3A4 inhibitors” can lead to ‘orthostatic hypotension’ (a severe & sudden drop in blood pressure).

@ajschanfield I had no idea what that meant. But doctors or pharmacist should’ve. (My eye socket was rebuilt. I close one eye when I drive, or I see several images of the same car. (On the positive side, I’m never lonely, because my house is full of people. Or is that one person?)

@ajschanfield 6) In 2018 I developed what looked like the plague on my forearms. Red, bleeding, oozing, bulbous purpura. At my grocery store the employees would be shocked, until they got used to it. “It’s just the “incredible bleeding man.” 10 Dermatologist couldn’t tell me anything.

@ajschanfield On an educated hutch (I read more medical journals now than any doctor), I figured it might be Erythema Multiforme, which is sometimes caused by herpes. I tried some old acyclovir. Cleared it up 95% in 2 weeks.

@ajschanfield It would scare me to go to any doctor if I didn’t know 10 times more about a problem than he/she did. No, I can’t do surgery. But assuming that they are stupid saves a great deal of aggregation and bad medicine.

@ajschanfield The ONLY continuing Ed for most doctors is reading medical journals. Those have some good info, but the PR firms of Big Pharma write the articles on new drugs (per JAMA). They understate the risks, and overstate the benefits (i.e., they are BS).

@ajschanfield So, that means, five years out of Residency, most doctors remember as much about medicine as I do my high school Spanish. (Nada.) I would go to almost none, if I could write my own Rx’s. They remain in business due to that monopoly, and most people’s ignorance.

@ajschanfield Plus, what most doctors in a field do, & what the journals lies about, is the ‘Standard of Care’, no matter how wrong. Following that Standard is an absolute legal defense. Therefore, the incompetence of most doctors is a perfect legal defense for all doctors. What corruption!

@ajschanfield 7) A PT doc, & 3 Rheumatologists, couldn’t tell me why my hip hurt so badly. I went to the Mayo Clinic/Rochester in April for other reasons. They suspected the cause, and MRI’ed it. Avascular necrosis (my hip joint is dying, due to lack of blood).

@ajschanfield 8) No one could tell me why I was do unlucky to have a record number of autoimmune conditions. But, on an educated hunch, in 2007, I asked for a number of tests, including my Immunoglobulin levels (in the blood, they are the basis for all antibodies).

@ajschanfield Mine were very low, but my doctors didn’t know enough to do anything. In 2019, I figured out who in Atlanta was writing a medial paper on CVID (common variable immune deficiency, an autoimmune condition I self-diagnosed. It caused by a lack of Ig). That immunologist recommended

@ajschanfield that I go to Mayo, or develop a network without one system (Emory) of doctors who talk to each other about me. Coordinated care. One small problem. Most doctors are incompetent. The Emory attempt was a total failure.

@ajschanfield He also started me on Ig infusions, incredibly expensive, coming from blood. (I am Dracula, not Frankenstein, as I consume human blood weekly.) It takes between 1K-100K pints of blood to make each weekly dose. A great side effect – it is anti-inflammatory.

@ajschanfield 9) Off to Mayo. Couldn’t believe it. No only coordination, but competence, communication, intelligence, real interest & care (even from every nurse). The way medicine should be. The Magic Kingdom, almost. Except it wasn’t magic. Doctors doing their jobs- a shocking concept.

@ajschanfield 10) I developed pretty bad bilateral leg edema. Because my lungs also filled with liquid (pleural effusion and bronchiectasis) and my nails turned a bright yellow, I guessed Yellow Nail Syndrome (YNS), and therefore the edema was lymphoedema.

@ajschanfield No one in all of Atlanta (which has a major medical school) could confirm or refute it. Of course, it didn't help that the Vascular Surgeon I went to had test results to tell me, but did not, apparently because it was not operable.

@ajschanfield (It was chronic venous insufficiency, not a blood clot.) My Cardiologist merely mentioned it. But not before I had scheduled a visit to Vanderbilt in Nashville, to see the only SE expert in YNS. He was excellent & competent, but had last worked at the Mayo.

@ajschanfield 11) I must say that I do find and have many excellent doctors, whom I then keep forever. It just weeding out ten to find one. Yes, some doctors actually know their business, read, care, think and communicate. It is just as rare as an honest politician.

@ajschanfield That “pearl of great value”. (Mt 13:46. No, “great price”, in most translations, is wrong. (Yes, like reading the journals to know more than doctors, I had to learn basic Greek to read the Gospels. I believe in Q, a great philosopher’s original gospel. You do what you must.)

@ajschanfield 12) You know recent events. The central focus of the book, however, will be not the tragicomedy of doctors, or of my life. Do you think I would let doctors continue to kill 125K Americans a year (perhaps 1MM total in the G20), if I could stop it?

@ajschanfield Most all the information is out there. There are existing programs in which you, or your doctor, can enter all your drugs. It warns, that between any two, there will likely be a major, moderate or mild interaction. Great info, but missing:

@ajschanfield a) What is causing the interaction? What other combos have the same cause? Thus, which of the DDI’s are cumulative. (There are many combo effects. The most common problem is a liver enzyme called 3A4, which processes over 50% of all drugs.

@ajschanfield Some drugs (‘inhibitors’) block the elimination of other drugs using the same enzyme (& themselves). What happens if you combine several? No studies can tell us -imagine that - but you get at least the dosage of each drug, overdosing, with intense side effects.

@ajschanfield Plus, they stay in the body far longer. In 2017 I was on TEN 3A4 inhibitors at once. No doctor or pharmacist would admit it, but I believe I gave me 50 times the dosage of all those drugs, plus all the numerous other drugs that merely use that enzyme (“substrates”).

@ajschanfield There are numerous other types of drug interactions – other enzymes, combined effects, cumulative side effects, etc. If you don’t know what is causing it, you don’t know the solution. So, a warning is a good start, but not nearly enough.

@ajschanfield b) Therefore, what are good alternatives? Example: most statins are 3A4 inhibitors. If a doctor wants to give you one, which will not interact? (Answer: two are mere substrates, but only pitavastatin does not use 3A4.) How many doctors do you think know that? Virtually none.

@ajschanfield To save my life, I became a top expert on DDI’s (and I’m a CPA). I cleared out all my 3A4 inhibitors, by switching to different PPI’s, statins, BP meds, etc. Yes, I went through many doctors to find one willing to write the Rx’s. She didn’t understand it, but knew that I did.

@ajschanfield It gives much worse. In HIV care, doctors & Big Pharma have started to use deliberately use inhibitors. One, called Tybost, was artificially produced, to be a “boaster”, super inhibitor. It has no medical benefits or effects, otherwise. Speaking of Frankenstein.

@ajschanfield It does work. You can reduce the use of other HIV drugs with it. But, of course, doctors have no clue that they are murdering tens of thousands of people with it, because it is affecting the numerous other drugs people with HIV are taking. The Final Solution for HIV.

@ajschanfield As it has no medical effects, there is no reason to stop with HIV. People with HIV were simply “expendable”, in their minds. If they are not stopped, they will start using it for everyone with major illnesses. Someday Ken Burns will make a series on how terrible this idea was.

@ajschanfield A Yale medical professor asked to use my Excel spreadsheets (I said yes). But imagine a database program that can do it for anyone. Imagine it listed all interactions, including combos, and their cause, and likely intensity. And suggested alternatives.

@ajschanfield Yes, I can do that. I read medical journals, and taught myself to read basic Greek. Don’t you think I can fix this DDI problem, and save 1MM lives a year? All I need to do is dedicate myself for a year. Including spending AS LITTLE TIME ON TWITTER as possible.

@ajschanfield And not being afflicted by the evil gods of medicine, as I am now.

@ajschanfield The other problem is, I have zero credibility with doctors and pharmacies, given that they don’t even acknowledge the problem. And, without a PhD or MD, they consider me to be a crazy man, John the Baptist, crying out in the wilderness.

@ajschanfield One thing I’ve learned from Twitter is what the public wants. We elected a celebrity Prez with no background, experience or insight. People want, & will read, not a scholarly book, but rather scandal, outrage, scorn, and insults. That sells. The science goes in the appendix.

@ajschanfield So, my plan is to develop that software, to save 1MM lives a year. And market it via a scandalous book. The cost is giving up Twitter. Wish me luck.

@ajschanfield Or, I can just go on the road with you. You pitch the set up, and I’ll be the straight man.
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@ajschanfield @threadreaderapp unroll, please.
I was in Vancouver last month. Great town!

@ajschanfield @ajschanfield Never ask such a open question, unless you want a very long answer.............