PSA: check yoself - ticks suck

[zinfamous]

I had, for a short time, care for a patient with ALS. He was managed evaluated by two of the best ALS specialists on the East Coast.

He and his wife decided they didn't want to leave any stone unturned (understandably so) so they found about these Lyme literate physicians online, and then found one locally.

The visits are obviously cash only paid up front. The first consultation was upwards of 2 grand. The first thing this "physician" (she, unfortunately remains a licensed and board certified internist) told them was that he "clearly" did not have ALS, but rather had "inappropriately treated chronic Lyme infection."

She then referred him to a "nutrition specialist" (not a nutritionist) who ordered 20-30 absurd lab tests that were cash pay only from a private lab and then sold him all the "necessary" supplements.

She also of course sent him to a private lab to confirm his chronic Lyme infection, which they obviously did with their own proprietary test (again, cash only).

She put him on multiple courses of iv antibiotics and antifungals which required a chest port to be surgically placed. Unfortunately the port got infected, twice, and it needed revision/replacement.

About a year and a half later, he died from his ALS. He never got any improvement from this woman's recommended treatment, but did spent upwards of 30 grand in treatments over that time.

The amount of disgust and anger I have toward these people is not quantifiable. I actually wrote a letter to the state board of medicine about her. Nothing ever came of it to my knowledge.

Holy shit man, that is just unconscionable. I didn't know it was that bad, actually. That there was a legit cottage industry of people doing very direct, very obvious, and very intentional harm to people because of this. I just thought it was a bunch of sugar pills and magic stones that they were supposed to be making themselves poor from.

These people are installing ports in patients? what the hell--how are places like this not investigated, shut down, and these "clinicians" tossed in jail? I guess this is exactly the type of thing that Trump's "Patient Freedom and Right to Choose," piece of shit bill is trying to legitimize.

 

[Cerb]

Just in case this gets achieved somewhere and someone stumbles upon it from the Google, chronic Lyme disease it's not a thing. "Lyme literate physicians" are charlatans ripping people off. As long as we're making PSAs.

Honest questions, then:

1. Why then, is not OK to just let your body fight it off? IE, it's considered a big deal, and requires bouts of antibiotics that can screw with your gut (as most will, three cheers for the appendix). AFAIK, the very reason for that is that if it is not treated quickly and well, it can remain as an active infection for an indefinite time period (IE, chronic).

2. So, what was it that Kris Kristofferson had for 10+ years, that ended up being diagnosed, and successfully treated, as Lyme disease, as far as anyone knows?

 

[TheVrolok]

Honest questions, then:

1. Why then, is not OK to just let your body fight it off? IE, it's considered a big deal, and requires bouts of antibiotics that can screw with your gut (as most will, three cheers for the appendix). AFAIK, the very reason for that is that if it is not treated quickly and well, it can remain as an active infection for an indefinite time period (IE, chronic).

2. So, what was it that Kris Kristofferson had for 10+ years, that ended up being diagnosed, and successfully treated, as Lyme disease, as far as anyone knows?

Really good questions honestly.

1. Part of this is a misnomer. The phrase "Chronic Lyme Disease" is what "Lyme Literate Doctors" (read: charlatans) call Lyme that is "inadequately" treated by the standard and evidence based 2 week course of antibiotics (or longer IV if it's really tertiary Lyme). There is also some confusion because "Post Lyme Syndrome" (or Post-Treatment Lyme Disease Syndrome) IS actually a thing, but it DOES NOT indicate a chronic, untreated, or incompletely treated infection. The "Lyme Literates" latch on to this nugget and distort it. The "Lyme Literates" use the word "Chronic" to suggest chronic infection, but this is not scientifically accurate.

2. Lyme, in general, can be very hard to diagnosis clinically because the present varies with time and is non-specific (except for early Lyme with erythema migrans, but not everyone gets/notices the rash). It is not uncommon to go undiagnosed for some time and in THAT way have a "chronic" by definition infection. However, this gets treated with a normal course of antibiotics and is cured. Again, the "Lyme Literates" are using nuggets of truth and then distort so they can extort.