Posted 5/30/2020 9:13 AM (GMT -5)
Oh I hear you, Familymatters. I keep conventional doctors on an "information diet." I only tell them what they need to know. I keep a document in Google Drive (so I can access it from my phone if I need to) that I update continuously with my supplements, symptoms, diagnosed conditions, doctors and specialists, stats (heart rate, BP, last menstrual period, height, weight), and current questions or concerns. When I have a scheduled appointment, I edit the document accordingly.
For my conventional doctors (or especially the ER) I do not include some of my supplements, as they will look at the list and tell me that because they are not familiar with them, they do not know whether the symptoms I'm seeing them for are side effects or not. Honestly, that's fair. Like a person on Saint John's Wort will not find hormonal contraceptives effective, and a person on the Buhner protocol might have easy bruising, but a doctor unfamiliar with those herbs will not be able to help. I respect doctors who just say, "Look, I don't know what to do with all of this," but not doctors who say, "This is all crap, clearly you don't need any of it because you're still sick, so here, take these pharmaceuticals." (Not that pharmaceuticals can't be helpful, just that most of us need non-pharma supplementation for gut, nerve repair, nutrition, etc. that allopathic docs are not familiar with.)
For most conventional folks, I list my diagnosed conditions early on in the document. Doctors are so into diagnoses. ;) And I usually don't list things that they think are fake, like adrenal fatigue and leaky gut and chronic Lyme. I say that I have a history of tick-borne disease with neurological involvement, but it's usually toward the end of the list. I do include chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia, because a majority of mainstream doctors know at least that those involve widespread disabling symptoms and weird reactions, and that they don't have many effective mainstream treatments.
I also list the reason for each supplement - immune system modulation, liver support, antioxidant, etc. - so they know that I am not just taking everything I see advertised by Goop. And a lengthy list of medication allergies and adverse reactions.
I can't say that the document solves all the problems with seeing conventional doctors. It feels like preparing for a court battle every time! But it helps. I think some write me off as anxious because of it, but others seem impressed. And frankly I just have so much backstory, and usually they need to know that!
The Bartonella comment confuses me. Bartonella and Borrelia are two different infections, and both can be transmitted by creatures other than ticks. Maybe that's all she meant? Technically "Lyme" just refers to one species of Borrelia, even though most of us in this community use "Lyme" as an umbrella term for tick-borne diseases more generally and the widespread dysfunction they cause. Perhaps she was just referring to the terminology?