Ethical Dilemma - What do you think?

[Ness78]

I have lyme disease.  I do not know when or where I was bit. I am an avid outdoors person and I live a rural area.  
When I was first diagnosed I thought I had the moral obligation to tell all the neighbours whose home backs onto the same farmer's field.  My husband and friend do not agree.  They think that since I don't know if I was bit at home, I shouldn't cause panick among my neighbours.

I also live across the street from a busy conservation area. I told the superintenant there and he said he would make the gov't literature they have on lyme disease more visible to park goers.  That is good,but is it enough?

What do you think? If I knew for sure I was bit at home, or in that park, I would feel much more certain about what to do, but I am not sure where or when it happend...so I am not sure what to do.  It's a big bomb to drop on the neighbourhood and it could potentially destroy business at the park. It is already suffering.

[JackieCalifornia]

I admire your civic spirit -- and the park superintendent who is willing to put out literature more visibly is a good thing!  Good for you for talking with him.

About cautioning the neighbors:  the truth is, Lyme is pretty much everywhere, regardless of what the IDSA says about it being endemic (localized) only in the Northeastern US and parts of California.  Ticks can't read maps, and wild animals (raccoons, coyotes, mice, etc.) and domesticated ones (dogs, cats) move freely and drop sample ticks wherever they go too.

In my mind it's not an issue of being able to prove you were bitten in your neighborhood or elsewhere -- you'll never know.  It could have happened anywhere, on vacation, anywhere.  So telling people that they might get Lyme in a specific location like a particular park is, imo, misleading, because people can get Lyme pretty much anywhere.

You might consider telling your friends and neighbors just generally about Lyme and its symptoms and that it's widespread, and you may even tell them that you were diagnosed with it.  Personally, I don't tell people, because there are many in the world who think anyone who says they have or had Lyme must be a little crazy, because that's how mainstream MDs approach it:  Lyme is rare, hard to get, and easy to cure -- therefore anyone who talks about it much must be obsessive and nuts.

I can see why that reaction happens, not only because of the official IDSA position that filters out through the community, but also because I'm sure I sometimes seemed a little nuts when I was really ill.  I no longer hear from some long time friends I happened to see for dinner when I was so fatigued (before I was treated) that it was a major effort to get dressed and get to the dinner.  I was blazing on adrenalin all through dinner, because it was the only fuel to get me 'up' enough to get there.  I seemed quite manic, I am sure, as I look back on it.  It's embarrassing, tho my rational mind says it was not my fault.

I have thought about writing to those friends and telling them about Lyme and that I'm fine now and ... what do I say then?  that I'm really not crazy?  that the manic person at dinner was ill, and not mentally ill?  The letter would just serve to convince my [former] friends that I really was and still am really nuts.  So I haven't written them, and probably will just let it all pass into history.  Sadly.  None of them contacts me anymore.  Maybe they are just busy, but I recall the wary look in their eyes at that dinner ... they really thought I was really nuts -- and truthfully, I can't blame them.

Soooo..... by being a good citizen and trying to save others from the miseries of Lyme, you may cause them just to think you're a little off, and that could just mess up the process of getting back to normal in your life, and you deserve to have 'normal' again.

I applaud your desire and intention to save others from Lyme, but given that Lyme patients are viewed as characters who belong in 'The Exorcist' or  'Carrie' or the Salem Witch trials, I personally would (and do) just keep my mouth shut.  If someone else brings it up, I'll relate some of  my story, and I can offer to share how I found a doc to treat me, but then I drop it and try to act so normal that they aren't afraid I'll start shooting flames out my ears before dessert.

Sorry to be a downer.  And good on you for wanting to save others from what you have been through ... but now your job is to get well, and to keep your life and your friends operating at a normal level, because you deserve that.  Just my opinion, based on me.

Again, good on you for wanting to help others -- just don't hurt yourself in the process.

[nutrinut_bob]

Thing is, one doesn't need to be bitten at all.  It's just as contagious as any other bacteria, even moreso in its mycoplasma form.  Hey you might have gotten it from one of the neighbors you're so worried about.

[Ness78]

hmmm...it's funny because the first time I ever heard of Lyme disease is when I first moved to my house and my mom handed me one of the gov't pamphlets from the gatehouse at the conservation area across the street.   Ha...I was still my young invincible 'it will never happen to me' self. I told her to stop worrying about everything.

So here I am one year later and it seems be the centre of my world...though I am working on it not being that way.

I wish to God I knew where I was bit.  I obsess that my children will get sick in my own backyard.  I have even considered moving.  This home (property) was 'a dream property' for me and my husband....he said if I want to move,we could live in two different homes and still be married.  It's a novel concept.

I feel like I dropped a bomb on the superintenant at the conservation area.  I forget how things like infected brain can sound to someone who isn't use to having one. I am going to apologize and explain it how you did Jackie, it could have happened anywhere so there is no need to worry too much, but to just be aware and make the gov't pamphlets visible...I am sure there will be another 32 year old who will think there mother worries too much when they are handed the pamphlet...d*mn that woman is always right. ...

I also got the feeling like I was the bad guy for having lyme and threatening his (the super's)world with it. I didn't ask for this d*mb disease. I can see there is a blame the victem mentality with this.

I am sure the big boss at the conservation authority headquarters just rolled his eyes and thought, oh know here is another crazy lymie.  I am sure he has heard it before...but hey, if I didn't have to fight so hard to be treated...maybe I wouldn't sound so crazy.

I am usually hush hush about what ails me. My grandma once told me that the truth is no one really cares...grim, but true.  People care, but they don't want to hear about it all the time. When I thought it was MS, I tried to save my greiving for night time when my kids went to sleep and my friends were not around. Someone told me not to let one tragedy create another and not to lose these precious years with my kids. That was good advice.  And truthfully, facing adversity like health problems has made me hold more tightly to how precious they really are.  

The good news is that I am back at work. I have been off for two years (not on sick leave, on maternity leave).  Work is good for my health,....because it gives me something to think about other than my health. Yay!

So I'll just sit back on the disease train, take my meds, eat well, advocate on a more politicial level, chat with you fine folks and get my life back to normal, or new and improved normal. :)

[nutrinut_bob]

Sometimes I think too much.  I had wondered before if poultry might be a harbor for the Lyme spiro.  Found my answer, it and several other species of the tick borne spriochetes.  Give your poultry antibiotics and what do you do, force the spirochetes to become mycoplasmas.  Grow some bacteria to use in vaccines on eggs from those antibiotic fed chickens and what do you have then?  A possible explanation for why so many people have Lyme that haven't been bitten.  And the number will continue to grow.

Ah well, won't do me any good to know, to get Federal compensation for injury done by a vaccine, one has to make their claim within 4 years, thanks to some relatively recent legislation passed to protect the pharmaceutical companies.  Wow, mine's over 10 times that old!

[JackieCalifornia]

"I wish to God I knew where I was bit.  I obsess that my children will get sick in my own backyard."

I hear you.  I think many of us never know when we were infected.  I suspect (just from the histories I've heard and read from various people) that Lyme etc. may be low level infections in some people -- including some I know -- and it's only when they get infected again or have another major illness that the immune system crashes and have trouble suppressing the symptoms.  

I think I've written here before that when I was diagnosed with Lyme and babesiosis, I dragged my kid to the LLMD to be tested too, despite protestations of "But I feel fine!"  Kid was positive for the same things I was, and --only after treatment-- acknowledged feeling tired all the time before getting treatment.

I personally think Lyme is not at all uncommon, and it's one of those background ailments that show worse in some people than others, depending on body chemistry and how strong the immune system is.  One of the many mysteries of Lyme yet to be unraveled.

The current epidemic of 'fibromyalgia'  --described on TV commercials and in painkiller ads as 'thought to be the result of overactive nerves that cause chronic widespread pain'-- just makes me roll my eyes.  Docs are willing accept that 'overactive nerves' cause debilitating pain and other symptoms, but won't consider that Lyme, a real genuine documented disease, is a little more complex that a couple weeks of antibiotics can cure?  

(That's bad enough, but if the government takes over medicine here like in Canada, then the IDSA 'guidelines' will be imposed on all of us and our docs in the name of 'efficiency.'  That approach shows no respect for nature and its tricks, and will only bring us more grief.)

But back to today.  I'd keep a sharp eye on my kids and how they are feeling.  Any rash gets taken to a Lyme-friendly doc asap, but half the time, no rash is seen.  Any out of character aches and pains, ditto.  A few weeks of antibiotics is useful very early in a Lyme infection, but the same meds may not be effective on other diseases the ticks carry.  Having a Lyme-friendly doc already located and ready to roll is a good thing, imo.  A six week wait for a first appointment may be too long to have the best shot at a full and quick cure.  I don't really know for sure, I'm not medically trained, but that's the approach I would take given what we've been through here.  

If you have time [when you're not working and taking care of yourself and your family] and want to read a great book about Lyme, I recommend 'Cure Unknown' by Pamela Weintraub.  Well written, informative, gives the big picture AND the details in a very well written true story.  Paperback on Amazon and elsewhere.

You take care, now!  Teaching the kids to do daily 'tick inspection' on themselves is a good thing too.  If I had little ones now, I'd show them photos of the ticks and how tiny they are by putting a dot of ink on their skin, and also show them photos of a spreading rash, esp if they are used to dressing and bathing themselves and you might not get to do the inspection on them.  Combing out their hair and looking for tick/rash on the scalp is another thing to consider doing regularly.  Making a game out of 'tick patrol' might work too.    

But in all of this, the important thing is to live life well and appreciate every single day. To quote a wise woman:  "So I'll just sit back on the disease train, take my meds, eat well, advocate on a more politicial level, chat with you fine folks and get my life back to normal, or new and improved normal. :) "