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I LOVE Helping Others - How could I use my profession as a tool???

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Lyme Disease
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Posted 3/23/2015 3:22 PM (GMT 0)
Quick note - two people I know reached out to me this past week who have friends that have Lyme Disease. They gave me their emails and phone numbers.

I LOVE this. I want to keep spreading the word - I want to be recognized as a lyme warrior and survivor and have people look up to me for advice and help.

I will be calling these two women this week to see how I can help them - maybe they will go see my Dr, maybe they have not been treating, I don't know. But I want to use my knowledge and experience to give them emotional support in addition to guiding them in the right direction towards healing.

Just this past week also I met a new forum member who lives on Long Island. We chatted via email and then spoke on the phone, and now she has an appointment with the pediatric Lyme Dr I brought my kids to. She would not have known what to do or even understood some of the issues her son has been dealing with if she had not spoken to me. Heck, I would not have been able to help her if it wasn't for this forum!! As I said before, this forum ROCKS!!!!

This is what I want to do. My kids will all be in school full time in the fall. I want to make plans over the summer so that I can make this my goal.

Any suggestions of how I can continue to spread the word? I will probably start by joining LILA - the Long Island Lyme Disease Association. I wish I could do something somehow to work as a pharmacist and counsel patients with lyme disease. I was even thinking of creating a CE program to present to the medical professionals. So many ideas - so many paths I can take!!! Any advice would be appreciated!!
Posted 3/23/2015 3:43 PM (GMT 0)
I assume most lyme associations have people lined up to speak with local government representatives, thats different than helping people directly, but it helps many in the long run by educating the states reps who influence local health laws ect.. Or just help out in lyme meetings with the newbies.

just remember that there is a fine line between helping people and playing Dr, legal complications as well. Need to be carefull.
Posted 3/23/2015 3:48 PM (GMT 0)
Thanks astroman - I am being VERY careful. The forum moderators on here know I don't step over the line and play Dr. But I wish I could use my profession and give even more advice than I already am - that would be awesome. But I have to stop at a certain point because I am not filling prescriptions and such for any of these people. I am just helping them understand lyme, supporting them emotionally, giving them information, making some suggestions, but I can't make real recommendations on treatment.
Posted 3/23/2015 3:57 PM (GMT 0)
I think starting out at LILA is a great idea. Since you know the drugs alot of the people are taking you could give them positive reinforcement and help them understand all their medicine. Just knowing the difference between what is a side effect of a medicine and what isn't is valuable information. You should contact the LILA leaders and tell them you want to help out and see what areas they need help in! You go girl!!! Awesome!

I know our support group here sends out weekly emails packed with a ton of good information. They also send us surverys to take that they send to all of the senators etc. to try and get good laws passed to protect our 3 LL docs in the entire state. I don't know what's happening in your area with Lyme and all that but there are a ton of things that you could do. Supporting people emotionally is HUGE. Maybe you could start a Facebook group for all of the people in the LILA group to connect in between meetings?
Posted 3/23/2015 4:39 PM (GMT 0)
If you like spreading the word-do you have a local (smaller) news paper?

I tried this - just a basic lyme informative article, and was turned down. The editor didnt think lyme was out there or a very important spring time subject matter. So I basically asked the editor if he would be OK with his children getting lyme? He hung up the phone. Another uninformed Idiot.
Posted 3/23/2015 9:44 PM (GMT 0)
A word of warning.... this has been going on with me too.... but sometimes even though they ask, they then don't always listen and don't really want to hear since it is all quite upsetting, expensive, takes a long time, etc.

I have one person who feared her daughter has recurrence. From everything she tells me, she def. does. Daughter is 13 in my daughter's class. So I gave her names, info, numbers, etc. She called ONE dr., spoke to a nurse on the phone who told her her daughter's blood work readings were fine. So, she went with that "I followed up, and she is fine". Wow. No visit to the actual doctor, no second opinion. Her daughter is passing out/falling, has had two concussions in this last year, trouble in school and her knee is giving out and giving her trouble - and she tested positive for lyme in the past.... REALLY????

I am so heartbroken for that girl and what will happen to her down the road. However, we can only suggest and be there for people.

I'm just saying, sometimes it's so rewarding, I had an experience like you did too. A mom had it for years and just thought her children were misbehaved, add, adhd, ocd, etc. No one ever even suggested there could be more.... she was so grateful and was going to look into it. I told her not everything is lyme, but she was really sick for years, symptoms just keep changing, she takes meds, feels better and moves on. Never occurred it could effect her children.

It's good and bad, but the ones I can't reach really tug at me....

You will be great, just be strong and brace yourself for narrow minds! Good luck!
Posted 3/23/2015 10:19 PM (GMT 0)
Agreeing with LMC mom about how heartbreaking it can be when you are willing to reach out to people. I talk with kids that still live at home frequently, and even though they believe their parents are "on board" with them getting the needed treatments, usually they see only an ID doc and the parents won't take it any further for any reason. This terrifies me because I grew up with these infections and know exactly what that's like!

But that doesn't stop me from sharing all the information I can any time I can!! I was just asked about it all yesterday - at a party for hubby's Aunt! Some of his cousins are finally curious as to what I went through. I was actually a little surprised when hubby was bragging about me!! LOL!

Anyway, Chapelle, I'm not sure how you can use your profession to help people with Lyme, other than being ready to talk to them when they come in with questions - but as a 'regular' person, there are tons of ways!!! What level do you wish to be involved in? In the 'face-to-face' with patients? Getting laws passed and do you wish to be working on the state or federal level? Or do you wish to help online?
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