In the news... Johns Hopkins

     In case you missed it, Johns Hopkins launched the first major US medical center to study Lyme Disease! As I learn more about this center through the article and the center's website, I find myself evaluating the center against the following truths that I realize based on my recent experience working through Lyme Disease and other tick-borne diseases.
     (1) Lyme Disease is one of several diseases that are transmitted by ticks in the mid-Atlantic region. These nasty little bugs can transmit Lyme Disease, Ehrlichiosis, Anaplasmosis, tick-borne encephalitis, and Babesiosis. None of these is a good time and at least one can be fatal, and furthermore, a single tick bite can cause several of these all at once!
     (2) Tick-borne diseases can be very difficult to diagnose.
     (3) Tick-borne diseases can be very difficult to treat.
     (4) Many medical professionals refer to Lyme Disease symptoms that persist after 2-4 weeks of treatment per CDC guidelines as "post-treatment Lyme Disease syndrome". Keep in mind that if any of the tick-borne diseases are indeed present after treatment, it can be difficult or impossible for a medical professional to distinguish those from "post-treatment Lyme Disease syndrome". In a nutshell, this diagnosis is the way many medical professionals reject patients who need continued help.
     Before going further, I feel compelled to clarify that I have not worked with anyone affiliated with the medical center - they are not Dr Lyme#[1,2,3]. That said, here's what I think.
     On one hand, I'm glad that the pursuit of understanding Lyme Disease is becoming a priority and that significant funding is available. It should be a good thing to some degree for the Maryland economy, too. And I love Maryland.
     On the other hand...
     The center deals only with Lyme Disease. Those other tick-borne diseases will not be covered apparently. I understand that Lyme Disease is the higher priority, but I am disheartened because there is no mention of tackling these other diseases at all.
     With its initial grant, the center will gather information about the impact of Lyme Disease on the immune system and the causes of "post-treatment Lyme Disease syndrome". I find this approach disheartening very much because it does not prioritize the major problems with both diagnosis and treatment for suffering patients. Also, I am somewhat disheartened to learn that such analysis is not already available, at least from a major US medical center. <sigh>
     The center promotes the "post-treatment Lyme Disease syndrome" paradigm and it does not perform "treatment studies" even for those with the controversial diagnosis. So yes, for me, a medical center that is geared toward Lyme Disease research but does not perform treatment beyond CDC guidelines - as research - is disheartening.
     The leader of the center states that "post-treatment Lyme Disease syndrome" is not fatal - I just don't know how such a statement could be made at all in the first place. The statement promotes a false certainty in a problem space that is not completely understood right now, hence the need for research at the center. The statement implies a limit to the patient pool - that only those with the controversial "post-treatment Lyme Disease syndrome" diagnosis are considered, while those without the diagnosis are excluded. Anyway, the timing... making such a controversial statement while announcing the initial grant, well, at best that doesn't seem to be a good idea.
     And then I think a bit more about the publicity and how it will likely draw to the center people who are looking for medical help to resolve tick-borne diseases that do not resolve within guidelines in diagnosis and/or treatment for Lyme Disease, and I am disheartened at the experience that may await them there.
     Hopefully, the research performed at the center will lead to addressing all manner of tick-borne diseases and the problems with diagnosis, treatment and "post-treatment Lyme Disease syndrome", but right now, it looks to me like that would take a very long time due to its other defined priorities.

Medical appointments...

     A medical appointment can be overwhelming. Typically, there's a some administrative work - like scheduling the appointment and adjusting work and life to accommodate, arranging payment through insurance and co-payments and sometimes filling out new patient forms. Once behind the desk, basic health info is gathered like weight, height, temperature, blood pressure, pulse and usually the physician's assistant who collects this info wants to chat about symptoms and understand the reason for the appointment. After all this, the patient finally meets with the medical professional.
     For me, meeting with the medical professional was generally a relief - like I had made it and everything will be just fine now - the medical professional will take care of me.
     But after several suboptimal appointments, ones where I had forgotten to ask something or I wasn't exactly clear on what was supposed to happen next, I had come to realize that I needed to participate in appointments more assertively and more consistently and I needed to objectively change how I was handling my appointments. I needed to set up some sort of plan... and here's what I came up with.

• Determine a purpose for the appointment based on symptoms, "I am here because I am experiencing <symptom X>.". This helped me and my medical professional start off in the right direction. And I try very much to keep this statement in plain English.
• Maintain a history or list of symptoms and treatments - like a timeline or schedule. Handing over a hard copy might be nice. Dr Lyme#3 actually required this as part of my initial new patient packet. I continue with a daily list of treatments and symptoms and we go over this information during my appointments. The timeline has helped me to understand what has happened and to identify trends, so I can recognize treatments that work better for me.
• Determine expected outcomes or decisions, "I expect answers to a list of questions, or a diagnosis regarding <symptom X>, or follow-on tests to help determine a diagnosis, or interpretation of test results, or a treatment plan, etc." Without this, I would tend to drift through the appointment.
• Determine expected next steps, "I expect a treatment plan, necessary prescriptions and a follow-up appointments, referrals for specialists, etc." On a related note, my medicine schedule got pretty complicated and it was easy to miss a detail even with the prescription handy - believe it or not, prescriptions are sometimes not very clear. So I would go through each treatment to understand what the remedy was called, how much I should take and when I should take it - and write all that down.
• Hold on to diagnostic test results, not just the interpretation. So often I would rely on my medical providers to manage the results or to just sum it up, but that became a problem when I started working with multiple medical providers who needed access to test results and when I wanted to research on my own. Tracking hard copies can be really difficult and time consuming, but fortunately nowadays most medical providers offer online services and HIPPA compliant disclosure to other medical providers, and sometimes medical providers share the same system so there's no need to schlep paperwork around - all of this helps a bunch.

     For me, I would write all this down as bullets in a document on my phone beforehand, so I could easily review it while in the waiting room and add feedback from my medical provider during the appointment. It might be better to have good ol' pen and paper - personal preference, perhaps.

     One last thing, I try very hard to avoid all those nice magazines and TVs in the waiting room - they are a total distraction. Instead, I try to focus on setting my frame of mind - that I need to contribute to the appointment - and reviewing my bullet points. Sounds boring, but it helps.