Multiple years to work through a checklist of tests and medications to try.
Flat out can’t get prescriptions for basic things like antibiotics.
Even when a round of it always results in a couple months of dramatic symptom relief.
At this point massive deregulation would be best gift ever.
I know what I said at the top of the thread, but I’d pay handsomely to assume the risk for an off-label prescription for Hizentra. The only probable downside is it wouldn’t work.
You might want to look for bacteriophage treatment, which lacks many downsides (at the cost of needing matching like donor organs, and thus distribution infrastructure).
Some years ago I suffering extreme chills for many days. I had to beg doctor for a round. She was mortified that I would want them. Next step was full ER visit while on a business trip out of state. So no insurance.
Was fine after a few days.
This happens every so often. Each time is a nightmare getting a prescription despite history.
So, if we eventually decide to count death by regulated drugs (not counting death by the regulation process itself) we might not come to a happy conclusion that it has worked as expected.
Would that still be the case without any regulation? All the regulations do is ensure that products intended for pharmaceutical use have a certain level of evidence of safety and efficacy.
It doesn't mean that unregulated products are unsafe or do not have a positive effect on health, it just means that one cannot sell them or market them as something that can cure disease.
Keep in mind that even with this regulation in place, people still try to sell things like the MMS [0], which the FDA warns against consuming [1].
While regulation isn't perfect, in this case I'd argue that it's a net benefit, all things considered. It's not perfect, but it's better than having no regulation in place.
[0] https://en.m.wikipedia.org/wiki/Miracle_Mineral_Supplement
[1] https://www.fda.gov/consumers/consumer-updates/danger-dont-d...