Knowing somebody might have lyme but don't know how to tell them without looking crazy

I wanted to share a dilema I have run into a few times lately and I am sure a few of you might have had this same experience before. I have met people either at work or when I happen to just be out and about and have listened to their story of illness whatever it may be, and there are times when immediately I know deep inside of me that this person probably has lyme disease. I have on a few occasions shared my experience and then said "you should get checked for lyme" knowing unfortunately that the test they get may just come back negative because of the nature of the bacteria. Also then I risk looking "nuts" and wishing that maybe I just said nothing. Most often when I run into this situation I just say nothing because first of all there is so much to explain once you start because there is so much people don't understand. I really want to help people avoid what I have been through over the past 20 years. I wish I could write a book (that people would actually read) to help them avoid this "trap" that I have been through when dealing with our medical system. I wish somebody would have told me 2o years ago because sadly I could have saved myself a lot of illness and stress and sadness. OMG we all should get together and write the first LYME BOOK on experiences we all have shared here on this site! imagine the people we could help and the awareness we could raise! That would be awesome. But it would be a huge undertaking as well. We would be the best authors because we have had true experiences that people can relate to. The "Healing Well Lyme book" lol! anyways I always seem to get sidetracked! So what do you all do when you suspect a person you are talking to might have lyme disease and you want to say something but don't know where to begin, and how to say it without looking crazy? Iwant to just help people but I think sometimes you have to consider your audience first. Sometimes people might not be open or educated enough in the first place. That is sometimes how I judge who to share this info with and who not to share it with. Any experiences out there that you might have had and want to share here?

I can't tell you how many times I have run into the same situation, I have met people who have been diagnosed with fibro, ms, and the list goes on.   From my years of experience, I found the best thing to do is to write down names of books about lyme, give names of websites that contain lyme information, and "suggest" that this person read it.  Then it's up to them.  Some are open minded and others simply don't want to hear it as they became comfortable with their diagnosis and their way of life. 

Everyone is different, many people believe whatever their doctor labels them and don't look any further.  They accept it and no matter what anyone else tells them, they don't want to hear it.  My older brother takes over 15 different prescription medications (not for lyme) because his doctors tell him he needs it.  And he believes them but he doesn't understand why he does not feel good, suffers from insomnia, etc.

Thus, we can only suggest..  Suggesting in my book does not make a person nutty..

Denise

Oh yeah . . . I was actually thinking of writing a post about that.

My cousin told me to butt out, and that I was giving her too much advice. She has Fibro., and has tested positive for Lyme before.

A friend of mine is scientifically conventional, and she goes by the standard Lyme tests, which were negative in her case. She doesn't like the idea of going out on a limb. And she had a circular rash!

I gave up on both, bc I didn't want to alienate them; but then, maybe I was too pushy.

Margaret

Margaret, I've just been re-reading that book. It's a good one.

I've told a few people they might want to get checked for Lyme. Here in the PNW it's not widely known, so most of the time they don't think it's necessary or some have been checked by a doctor who isn't trained to diagnose it and it comes up negative. I tell them it's hard to diagnose and a negative result might be wrong. Then I tell them they don't want to go through what my daughter and I have and tell them what my daughter's life has been like and they listen to that more.

A basic book to inform people would be good.

It's hard to be convincing if you don't look as ill as you are. I know many of us have heard the remark "you don't look sick." After the stress I went through the last 3 years, I'm more convincing.

Last year, there was a big section at the home and garden show that was set up with information on and to make people aware of a health condition and I thought I might see if it would be possible to do that to make people more aware of Lyme. I also wondered if the subject they displayed could've been Lyme in some cases.

Lyme just isn't widely known here, so it would be a great way to do it.

It's so tricky - you don't want to scare a person off from getting help, or overwhelm them with loads of info. But at the same time, I sure wish that I could have talked to someone who was Lyme literate back when I was so sick and didn't know why.

Great question! Lots to think about here.

I figured out I had Lyme on my own, because I was so stumped by my symptoms, I figured it had to be worse than your garden-variety Fibromyalgia.

So I read and read, and researched the internet out the wazoo.

Finally, I had lunch with someone who is on the board of a Lyme Organization in the area I used to live, and she put me in touch with a woman who used to live in my neighborhood! I called her, and she kept confirming that my symptoms had to be Lyme, so she put me in touch with a NY LLMD.

Margaret

vcast, is your Aunt open to your thoughts?  If not, I would leave it alone.  It's better when a person (friend, relative, etc.) comes to you and asks you questions..   As I said before many people get comfortable with their diagnosis and don't want any changes (could be from fear, etc.).  I know this is sad but we can't change others, we can only let them know we are there for them.

Denise

Yea for the dog feeling better!! Good for you for decorating a Christmas tree!! And cleaning out clutter? Well, I've still got lots of that! LOL!

I agree that we must be very careful to not 'push' Lyme on people, but to give them relevant information, which can be hard at times. I've talked with countless numbers about Lyme and have no clue how many have even checked out this forum, but none have ever contacted me personally.

I'm still going to start up an informational/support group here in my local area one day soon though. If I don't get much response here, I'll go to the neighboring cities (much larger) and try there. I will at least bring a bit of awareness even if I make a fool of myself!!! What better reason to make a fool out of myself for?

Some people don't want to hear it at all no matter how it's put, like others have said.

I have an extended family member that's a nurse that has Lyme disease - but because she would feel like a "traitor" (their words, not mine), they won't even consider getting treatment from a doc that knows about these infections! Crazy! I know that I've alienated this person, as I was trying to convince them that it won't "just go away one day" as they were told.

Sometimes you just can't help but alienate people who don't want to hear the truth.

Doctors are also afraid of losing their licenses.

Margaret

Hi Trav.,

You must live nearby!! :) I live in NC. Oh, don't worry; you don't have to divulge where you live. Of course, the medical board in my state took away the well known Dr. J's license.

My doctors tolerate seeing the word, "Lyme" on my medical records, but they don't say anything about it, except for the NP who told me she thought Lyme only existed in New England.

I did have another NP, who, when I showed her the pic. of my second bull's-eye rash, said the "Sh" word. :)

Are your doctors still like that?

Margaret

First I want to say that I think lyme awareness has come a long way since I first became infected in 1995.  I literally ran out of doctors to see when I first became sick and finally diagnosed myself using the internet.  Then I did get medical proof (first from asking a nurse to perform dark field microscopy ~ which does NOT always show spirochetes but my test did).   Then my Dad's doctor sent me to an Infectious Disease doctor who told me about IgeneX (I never heard of them before) and this ID doctor sent my blood there which came back CDC positive.

Vcast, as far as your Aunt, as long as she stays with the same doctors nothing is going to happen.  She has to want to switch doctors which most people do NOT want to do.  I have a friend who believes she has fibro (I know she has lyme) and I ordered a free test kit for her from IgeneX and left it up to her.  Well guess what?  She never did get tested.  So I left it alone.

It's really frustrating when you just know someone has lyme and that person does nothing about it.  I have learned to accept it (most of the time) and just let it go.  I can't worry about the whole world but I do what I can to promote more awareness and let people know I am there for them. 

Just want to mention that through the years people have contacted me and would ask me about lyme as I never kept it a secret how I suffered from it.  

Denise