Links to good research, please!

Hey everyone - I had this idea that as a new way to shield myself from doctors' interrogations and refusal to take my disease seriously, I'd bring in a packet to each new doctor about all the best/latest research regarding chronic lyme/lyme in general. That way instead of my foggy brain that is now anxious from being put on the spot being expected to answer really intricate questions to prove that my doctors and I aren't quacks, I can just say oh yeah a lot of people don't know about all the new research debunking old misconceptions - why don't you take a look at this when you get a chance?

...and then maybe they'll actually move on to practicing medicine instead of getting their jollies by making me cry a little.

If anyone has any good links to research to contribute that'd be awesomely helpful. I'm tired of feeling anxious and bullied when I inevitably try to get a torn tendon or a thyroid checked out by a mainstream doctor - maybe this display of confidence will help out!

Wish me luck and thanks in advance!

btw, just came across this, haven't fully read it but seems interesting:

http://www.medscape.com/viewarticle/574944_1

This subject always strikes a chord with me and is always such a difficult and important discussion—how to make our interaction w/ the medical community more productive. I was raised in an environment where MDs are omniscient Gods and I was never to question.

This is especially complicated when, like you said, we are not at our best and brain fog and cognitive challenges get the best of us. I've had some horrible experiences w/ MDs and it just breaks my heart when I hear about the way people are treated by the medical profession, when it's the failure of the medical profession that has allowed us to be this sick in the first place.

My fury aside…

I think you're on the right track with trying to be prepared. Traveler's links are great, there are some good resources in the "New to Lyme?" thread… I've been keeping a list of resources and I'll post as well. If you REALLY need some medical expertise outside of your LLMD, you're going to have to take extra steps.

The most fundamental mantra we all need to have ingrained into our brains is… THESE PEOPLE WORK FOR US. If a situation gets tough, remind yourself how you would handle a difficult employee or wayward contractor fixing your toilet.

1. Ask your LLMD to get involved. They're overextended in a hundred ways, but it just might help having them speak on your behalf or help share info. And compartmentalize the information that you need them to know. There's no way they're going to wrap their heads around your entire condition—or the realities of lyme & co. But you can help them help you by being organized and focused.

2. Have someone there with you when you go to these MDs. This is not achievable for some of us and when I win the $300M lottery, one of the first things I'm going to do is to set up support stations throughout the country to provide services just like this… but I digress…

3. Adjust your approach. Just like any relationship, we have to be careful when and how we bring our baggage into it and we have to manage the expectations we bring into it. And it ain't easy. We have been jerked around SO MUCH. Most of us have been suffering for SO LONG. We're severely under supported and misunderstood. And it's pretty normal to get impatient and need solutions and answers quick. And that's not realistic to expect from MDs in our situations. Acknowledge the complexity of your situation and their limitations and ask them to collaborate with you.

3. Manage your expectations. Like others have said, most MDs simply aren't interested in the avalanche of detail that our lives revolve around, now. More to the point—any MD participating in managed healthcare is RESTRICTED from spending any time with patients as they are required to see 10 or some other ridiculous number of patients each day. It doesn't get more limiting than that. And most are not amenable to being educated by a sick patient—they are the experts and their egos have to be managed as well. I think the younger generations of medical professionals are growing out of this. And let's face it, we can often come across not very "together" with all these cognitive challenges. And when we exhibit exasperation, it's off-putting.

4. Prepare for your part in the interaction and theirs. In addition to all the other complexities in our situation, we have to prepare ourselves to go into a situation with expectations outlined—literally prepare like you're preparing for a job interview. Figure out exactly what you need out of the interaction, determine the best delivery and literally rehearse your delivery. See yourself doing it and then practice it several times—while you're in the shower, getting dressed, doing the dishes. And then also imagine how you will react to a couple of scenarios that have in the past upset you or made you feel trapped or confronted, and then practice your preferred responses. Better yet—practice with someone else.

5. Clear the emotions. The other piece of the interaction is rehearsing being calm, cool and collected. THIS TAKES PRACTICE. The reality is that any sign of emotional imbalance distracts them and they often resort far too easily to their "psychological issues" responses. AND… the key to maintaining an equal footing (or at least not getting mowed down) in a conversation with these MDs is to remain cordial, direct, make eye contact, be agreeable, and confidently, assertively STAND YOUR GROUND. But this takes practice, patience and confidence in order to get out of there with your sanity and pride intact.

I have always worked in very male-dominated environments and had a boss that was incredibly misogynistic and hated our one-on-one sessions because I always remained stoic, so much that he could never maneuver me or manipulate the situation (which ironically made him react very emotionally, himself). He had learned to expect a certain reaction out of women, and my participation stumped him every time. But we always got a lot more business taken care of and I felt little "wins" each time. I wasn't always as unemotional in private, however… and that's OK.

6. Be very organized. Bring copies of all your tests to hand over. I also have a copy of my original LLMD questionnaire for them, which I find documents a more comprehensive medical history and current symptom history than anything I've been given by any MD, or any Q&A with an MD, and better than any questionnaire I've ever seen online. I won't post it here but if you email me I'll share it. It's great to share w/ MDs and NDs. Most outside of lyme specialty simply aren't allowed to spend the kind of time it takes to truly understand a medical case (which is THE MAIN risk we run with any managed healthcare system) but at least your detailed info is in their file and you can reference it.

And it’s also a good idea as you’re handing it over to indicate that, “of course, I realize you don’t have time to read through all this but perhaps one of your assistants or nurses can—there may be some relevant information here that you might want to explore.” Again, that communicates to them what you’re expecting them to do with all that overwhelming info. And, it’s a subtle hint that you’re also expecting more than the minimal amount of consideration.

7. Be clear and precise about what brought you there and communicate very simply why you're there and what you're hoping to get out of the interaction. This will help guide them in the right direction and alleviate a little panic on their end that they're being asked to solve everything—since our conditions are so overwhelmingly complicated.

8. Have information ready to share. I LIKE the idea of bringing in a clean and very well-organized folder or file envelope of information about lyme. I wouldn't hand it over to anyone because Traveler and sebreg are right—they're not going to embrace that. But use it as a prop. Reference it confidently. It's your security blanket when the MD "interrogates" you or challenges basic lyme information. And if the conversation goes too deeply and they simply don't have an open mind… move on. You can lead a horse to water but you can't make it drink or even realize what he's standing next to.

9. Rehearse. Then, prepare yourself for how you WANT to react when they start discounting lyme or denouncing your specialist or treatment or making you feel stupid. If you rehearse this, you'll be more "trained" to respond intellectually rather than emotionally. They love it when we get upset because it lets them off the hook and gives then a reason to be lazy and blame psychosis.

10. Decide how much personal info you’re going to share. This may be controversial but this is one reason why I generally do not share with MDs any psychological sx or history or family history I may have unless it is critical to my visit. Over time, after they've come to know me and I build trust with them, I'll share and I'm far more apt to share w/ LLMD or ND than general practitioners or specialists. This also helps you maintain control. It's your information to share and it's up to you whether or not you want to share it. And unless you are experiencing symptoms that could result in you doing harm to yourself or others, do not share psychological symptoms during an ER visit. By law, they may have to hold you for psychiatric observation—or worse.

11. You are in control. Rehearse how you will exit the situation if you need to. If you're feeling backed into a corner, it's also OK to calmly, boldly, confidently say to the MD, "hey - it's OK, I realize you're not the lyme expert and that's not why I'm here but I do need you to respect that this is a reality for me and that "X" is what I need from you, so if we can focus on that I'd appreciate it." And if things really get shi**y, it's OK to say, "hey, I'm cool with you not knowing about lyme but you still have an obligation to treat me with respect and DO NO HARM. Otherwise, I'll happily take my business elsewhere."

Keep reminding yourself that THESE PEOPLE WORK FOR YOU.

Just a few thoughts--hope this helps.

-p

Post Edited (Pirouette) : 7/26/2015 5:55:56 PM (GMT-6)

CRIKEY! I better fix the typos LOL

(and thanks T… hope it helps someone…)

-p

Everything everyone said is on point.

This is my experience which might help a little because I'm the new kid on the block.

I have been seeing the same Rheumatologist for more than 10 years for Fibromyalgia. In December, he put me on Plaquenil for new joint pain and sort of called it the drug of last resort because I have been on everything. He sent me for eye testing because of the Plaquenil. This sent me to my eye doctor who had new information about Lyme and asked me about it because she knew I grew up in CT.

That began a running argument between me and my Rheumatologist. The practice has an electronic patient portal so I could send emails to him. He wouldn't even consider testing for Lyme because "there was nothing in my record that would suggest Lyme." I completely disagreed. Eventually, I wore him down and he asked what tests I wanted.

So the next time I had an appointment I brought in the form for the Igenex test. We still argued over it, but I said in all the years I saw him he always gave me info about meds and treatments and had me research it. if I wanted to try it he would write the script.

He said that he had not read anything about an overlap in symptoms with Lyme and Fibromyalgia. Being very bold, I said that there was in the articles I was reading. He said to me that there are not enough hours in the day to keep up with all the reading. I understood. He turned to leave and said, I may have read something recently. I asked about Igenex and he said NO. So I said it may have been that a lab was expanding the number of bands they read on the Western Blot. He said maybe, but I could see the spark of curiosity. He also said if it came back positive, I would have to find someone to treat me because it wasn't his bailiwick. I said I understood. He signed the order.

So earlier in the week I finally got a call from the nurse that the results were in. She said he didn't know how to interpret it so, Did I? I said I didn't but I knew people who did and when I come in on the 6th I would bring the info with me. She also asked if I would be seeing an ID? I said no, any id would laugh me out of their office. I also said that until I got treatment the Fibro diagnosis was still valid.

So Friday I'll bring a copy of Burrascano's Advanced Topics in Lyme and a paper my eye doctor sent me that just came out about how often the eye testing was needed for Plaquenil. That's it. I know he'll read those. He's the only doctor in the county that treats Fibromyalgia. I expect that he will ask me for more info. He's about quality of life and if people are being misdiagnosed he won't want to continue it.

I expect that he may mention Lyme to some of his patients, but he won't become an LLMD. I live in NC and there is not a doctor who bills insurance companies that can treat patients for Lyme.

Give your doctor enough to make them interested, but if you come in with a pile their eyes will glaze over and you will have wasted your time.

Good Luck,
Kim

not sure if this has already been posted:

http://home.comcast.net/~runagain/LymeDiseasepandemic.pdf