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Just diagnosed....need instruction, please

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Posted 10/28/2015 8:18 PM (GMT 0)
This is my first visit to the Lyme forum. I did read some of the threads and now need your advice.

Today I received a phone call from my PCP. She had been notified by my new cardiologist that my recent blood test was positive for Lyme disease.

I'm an 80 year old female who has lived in the woods surrounded by deer for the past ten years but have had NO Lyme symptoms, and no rashes or even attached ticks (that I can remember)

I have an appointment tomorrow morning. What questions do I ask?

~ Joyce
Posted 10/28/2015 8:46 PM (GMT 0)
Why were they testing you for Lyme if you don't have any symptoms?
Posted 10/28/2015 8:59 PM (GMT 0)
Good question, Sarah. That is the first thing I'll ask tomorrow.

This was a new doctor who did the Rx, and there were five vials of blood drawn..
Posted 10/28/2015 9:21 PM (GMT 0)
Hi Pa_grandma!! Welcome to our community!!

If you haven't yet, please read through our "New to Lyme? Start here!" thread as it's packed with helpful information like symptom lists (you may not be aware that you were living with the symptoms), but also a list of questions you will want to consider asking your doctors.

But the first question you should ask after getting their answer for why you were tested, is if they are ILADS trained!! ILADS stands for International Lyme and Associated Diseases Society, and they have different guidelines from the IDSA (Infectious Disease Society of America) which will actually help you heal instead of only giving you a month or so of treatment and then tell you that you are on your own to deal with it all.

And then be sure to come back here and let us know what happened at your appt, we can help you sort out what was good info and what you need to amend.
Posted 10/28/2015 9:22 PM (GMT 0)
Hi Joyce - welcome to our community!

That is interesting - tested but don't have symptoms. But, you were seeing a cardiologist...did you have some heart issues?

Since you are 'new' to our forum, you might be interested in reading through the "New to Lyme?..Start Here!" thread at the top of the page. It's full of great information.
There is a symptom list in that thread - maybe you have some symptoms - and were attributing them to something else?
Before I was tested and diagnosed...I kept going to the online sites and never thought my symptoms matched up to lyme disease. I read flu-like symptoms (nope), fatigue (nope), fever (nope), joint pain (nope - at first...but it showed up several months later).
Posted 10/29/2015 7:09 AM (GMT 0)
Yes, I have read the threads suggested. A lot to 'digest'. Will read again today.

My heart problem is Intermittent claudication, limited blood flow to one leg. Perhaps that was caused by Lyme....but didn't read about that symptom. I'm so confused and overwhelmed. (and can't sleep! It's 3:00 am)

Will get back and (try) to give more info after my 9:00 appointment.

~Joyce

Oh lordy...just googled the claudication and lyme topic, and THAT appears to be my 'symptom'. Over two years now with no support from previous cardio doc....that's why I recently changed to a new.

Post Edited (PA_grandma) : 10/29/2015 1:29:11 AM (GMT-6)

Posted 10/29/2015 1:14 PM (GMT 0)
Hi Joyce,

As others as have, getting the diagnosis right is critical to getting the treatment right so it will be very important to ask questions about how your doctors arrived at the lyme diagnosis and make sure you are informed of all the tests and treatment options. Getting a second opinion is a good idea too.



-MW

Post Edited By Moderator (Traveler) : 10/29/2015 8:07:40 AM (GMT-6)

Posted 10/29/2015 1:32 PM (GMT 0)
MW, Mayo Clinic is not literate on Lyme Disease. Please don't post that here.

I see you're new. Do you have Lyme?

Posted 10/29/2015 2:06 PM (GMT 0)
Hi MW,
Welcome to our community!

As Sarah has said, the Mayo clinic is far from being Lyme Literate. Do you have Lyme yourself or does someone you know have it? Sorry, we are just trying to figure out why you posted.

I removed that link because it's misleading to read through. Just because you aren't "outdoorsy" surely doesn't mean you can't have Lyme since it's also spread by mosquitoes and fleas, the testing they say is necessary is far from reliable and so on.
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