posted
I find lately it's very hard to organize my thoughts, and in turn find it frustrating to talk about my lyme symptoms and daily experiences with people.
Does anybody have any tips they'd like to share about how they address the multitude of symptoms we all experience when talking to someone else?
I'll be talking with my parents tomorrow about my symptoms, and eventually with a doctor hopefully. I just want to make sure I can communicate effectively (something I feel I cannot do right now with all my cognition problems).
posted
My parents helped me get treatment when I was first diagnosed, and my brother had lyme and coinfections as well- so my parents are no strangers to all of this! I just want to be able to talk about them properly so they can understand why I still want treatment. I'll try to keep things straight and narrow though.
Posts: 10 | From Winterville, NC | Registered: Sep 2013
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posted
Focus on the main 2-3 symptoms that bother you the most and impact your life the most.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Sometimes writing it down on paper helps-
Sit with yourself with paper and pen, start writing, organize your thoughts this way.
I used to keep a notebook on my high kitchen counter, and the back page were things I wanted to bring up/ discuss at my next LLMD appointment.
I would think of something between appointments, and have the notebook handy to jot it down. I also wrote down what I was taking every day, and at what time.
So, I'd bring the paper with me and refer to it at the next appointment. It sure was useful.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Depends on WHO you are discuss ing it with....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I'd need to know the entities you're dealing with - is is just Lyme or is it also any co-infections?
I'm used to starting simply, then watching and listening to someone's response. I think it needs to be a dialogue, for someone else to "get" the issue, as I then respond to their questions and comments.
So the first thing I have to ascertain is whether they're willing to have that conversation with me. If not, I refer them to some sites for info and leave it at that.
So, if it's just Lyme, I quickly say it's a bacterial infection, that the bacteria get into the brain within 12-24 hours and begin to inflame the brain (unless someone's born with it), that it's a brain infection that can mess up all body systems.
Also that the bacteria can corkscrew into tissues anywhere and cause inflammation.
That's usually good enough for starters. I see how they respond before I go on with more detail about how the infection can mess us up. That's the second layer of conversation.
I give a few more facts about that, and then see if they want to go deeper, into the mechanisms.
It's best if you can correlate a symptom to something basic about the bacteria. You don't have to know all the details, because they might not be known anyway!
Just the basics - example: Brain fog = bacteria in the brain, also maybe low thyroid. Gut issues = ANS autonomic nervous system affecting gut motility, immune system in the gut being affected, maybe candida. Etc.
So yes, you need to do your homework about your major symptoms so you can talk about them in a basic way.
Usually by then, they're asking other kinds of questions anyway, like about testing or treatment or whatever. Best to respond to their questions, which means they're engaged in the topic.
If you don't know the answer to a question, say so and that you can find out the answer for them. Then research it or come here for the answers!
There is an art to this conversation, I've found, and we need to get skillful at it, because we are the communicators about the situation for now, by default, unfortunately.
In order to do that, you have to have a minimum understanding of how the infections are operating, in order to paint a picture of what they do and how it's affecting you.
I've found the public wants to understand about something, and they usually lack a mental picture about these illnesses.
Same process for the co-infections - basic details first, followed by more info if interested.
Posts: 13171 | From San Francisco | Registered: May 2006
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