This is topic What would you have said.... in forum General Support at LymeNet Flash.

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Posted by OtterJ (Member # 30701) on :
I met a woman today who has neuropathy. I asked if she was diabetic and she said,"no." My next question was, "do you have lyme?" She said she had tested negative. I told her that the tests were often inconclusive if not wrong and gave her this site and my llnd's name. I don't think I made an impression. Would you have said or done anything differently? I probably will run into her again.Is it a case of,"You can't tell anyone anything until they are ready to listen."
Posted by droid1226 (Member # 34930) on :
You did it right.

The more adamant you are the more resistant people get. People don't want to believe because when they read about chronic lyme it's too overwhelming and devastating.

I always say, "there's a way to get better but it involves a 200 dollar lyme test through Igenex. I've helped others with _____(insert symptoms here) and they are better now."

That's really all you can do. If you are pushy, they get defensive and think that you're just pushing your illness out on others.
Posted by kgg (Member # 5867) on :
Low B12 can also cause neuropathy. But yes, I would have said the same thing. You educated. Now it is up to her.

Good job,
Posted by Lymetoo (Member # 743) on :
Yes, the ball is in her court now. I hope she thinks about it!
Posted by Keebler (Member # 12673) on :

Considering the state in which you live, indeed, you are always correct helping to provide some information to those who may never hear it (as MDs have so censored lyme in Oregon).

Glad you gave her your LL NDs name. That is the best move of all. Then you can not have to think of all the aspects of this.

In the future, for those with money flow challenges, you might also let them know about the NCNM Clinic, sliding fee scale. . . and also one over at OCOM. But be sure the inquire at either place for someone with lyme knowledge as not all NDs or LAcs have that.

Perhaps, carring a business card, not with your name on it, but 3-6 links and the Portland Lyme Support meeting detail.
Posted by Keebler (Member # 12673) on :
For such an informational card to hand out, you might find appropriate "quick" links among these:

LymeNet Discussion Board

Here are some top lyme advocacy organizations. Some are set up to welcome volunteers in various ways.

Each has some differences or focus, but they are all fully "lyme literate" and ILADS "minded" -- bringing them all together.


Lyme Disease ASSOCIATION -

Tick-Borne Disease Alliance -

Lyme Research Alliance -

Treat The Bite -

Lyme -

The state discussion groups through this last link: -
Posted by Keebler (Member # 12673) on :
Here I say, only a few links for an "info" card. Still, if there were enough room on a card, these might be included:;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.

Reasons for False Negative (Seronegative) Test Results in Lyme Disease;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme


Some of the groups in the first set have a brochure (especially the LDA). You could carry a couple of those and then add a card for local LL NDs and local support group connection.
Posted by Dogsandcats (Member # 28544) on :
You tried, which was a good thing. You never know someday the information might click and they will get help.
Posted by lpkayak (Member # 5230) on :
otter after a long time and waste of my energy i have learned to do exactly as you did

i usually add "i wont bring this up again but if you have any questions call me"

then you really need to turn did your cant stress over others cu you have to take care of yourself\\

i have had lots of practice with so many in my family sick and in denial
Posted by OtterJ (Member # 30701) on :
I did give her the lymenet web address. I hope she will find her way here.
Posted by cozynana (Member # 34270) on :
I have run into the same thing. People just don't want to hear it.

Some want to stay sick, some think we don't know what we are talking about, and others are just plain afraid.

We do what we can and the rest is not up to us. Took me a longgggg time to learn this lesson.
Posted by Dogsandcats (Member # 28544) on :
Even if it didn't help her, she might pass it on to someone else who will benefit.

It is a small world!

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