What to do?

It seems like everyday I hear of another person, or run into someone, who is having sudden severe anxiety or other problems and are running from dr. to dr. for months or years and not getting an answer. 

I have a list now of 30 people in my general vicinity who either have been diagnosed or I think could have lyme. 

I used to think it was all my imagination until I hear their stories.  Could it really be fibro or menopause or stress, I don't know but I have a problem conveying to them that it "could" be lyme. 

Many have had the test and are negative or believe it just to be a swollen joint disease or are not avid internet searchers. 

As I am determined to be an advocate for this disease, does anyone have any suggestions on how to convey the message that lyme is a unknown right not with inaccurate tests.  There are not many diseases out there that give a negative reading when you really have the disease. 

I don't want to sound like I am obsessed with everyone having lyme but it is so frustrating when we have lived the life of horrific symptoms and told there is nothing wrong, which many of these people are going through.

Thanks.  Have a great day.

Can I ask you what is your theory is that your whole family is infected? Do you believe it is contagious or do you believe you were all bit somewhere? My husband, son and I are all infected. I believe we got it in our yard but isn't it strange that we would all get bit. Just how many teeny tiny ticks carrying lyme may my yard actually have?

**This is not directed at anyone!!!! ***
I feel that if we aren't saying anything to (at least) those we care about, then we are allowing the possibility that they have an infection that may be easily taken care of, to go on and fester, infecting them even further possibly. The reason for my thoughts are because if I had had the opportunity to have someone that I knew to sit down with me and speak intelligently about the possibility of my having Lyme and possibly other tick-borne infections, I wouldn't be nearly as ill as I have been for many. many years now. The last 12 years of my life I have had to live indoors, only able to watch life go by. That's not me. I want to essentially 'live' outdoors - and I am finally able to start doing that again, now after finally finding the treatment that my body can deal with.

There have been reports and studies showing that Lyme can be passed between sexual partners, and through breast milk as well as through the placenta. Why shouldn't whole families be infected if even only 1 parent has been bit by a tick? Babesia is in the blood supply here in the U.S., and we are just now getting studies going to find out what other ways these infections can be passed.

This info isn't something to be afraid of - we should be passing it around!! I don't mean that we should "get in someone's face" about this, but if there is a conversation that can be started, why not?

We also need to be sure we understand all the ways to contract these infections - so that we don't set ourselves up to be re-infected without even knowing it! There are plenty of things we can do to protect ourselves - we just have to change our behavior - and we all have proven we can do that!! Just take a look at your daily routines right now!

I know I'll be shelling out what ever the cost is for the treatment that you can use on clothing to help keep ticks away, and I already wear the light colored clothes outside so that I can see those that do get on me, do the regular tick checks, treating my yard so that there's less chances of my pets bringing them inside, and whatever else I can think of. These bugs and infections have taken away enough of my life and I intend to take it back! The frustrating thing is that it's no longer just ticks spreading these infections.

Oops - - so sorry - I'm stepping down off the soap box slowly.......

I hope to start a face-to-face support group/informational meetings in my area once I can actually do those things! At least that's my hope!

Another thought - we are sharing our info ...right here, on the internet, with all those that choose to look at that one particular link that will bring them here, to the Healing Well's Lyme forum!!!

So glad I brought this up. I've gotten some great tips and even some laughs (. . . stepping down off the soapbox slowly - LOL) .

I have planted the seed so many times, I'm starting to think I'm gardening again. Some have come back with later questions and I have had people contact me with lyme questions, so it is good to know I am helping some, I think.

So funny that you mentioned creating a booklet, because I just recently thought of creating something myself to hand out to just people that ask me questions. What made me think of this was that one such person is suffering extreme anxiety and does not want to speak with me directly and I know just how she feels because I avoided everyone when I was having anxiety issues. The first thing would be to attempt to explain inaccurate testing because that seems to be the hardest point to get across. Everyone says to me "well I had a lyme test and it was negative" or "my dr. ordered a lyme test." Its not really going to matter to me if its not through Igenex but I cannot get that across in a quick conversation.

So perhaps when the holidays are done and things slow down at work, although they just picked up (LOL), I will type up my notes or my way of explaining the lyme controversy.

I'm certainly not an in your face type of person but it is frustrating to watch people suffer with what I am sure could be lyme.

Borderlyme, I am in the same boat as you as I have a few family members that I wish would get tested and I have dropped hints but since they don't have the telltale symptoms, they shrug off the possibility. It is not an easy one to start with, let alone when it is a family member. My own husband refused to believe me until he was so sick he was hospitalized. Not a time when I wanted to be right that's for sure.

BTW Trav, do you treat your yard professionally or yourself? I am looking into this.