Topic: how many times do you tell the ones you love they might have tick disease?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I know I have talked aobut this before, but I just can't help that I really care and feel terrible about my sick friends and family that just won't believe in lyme or tick disease.
so my mom finaly caved and asked her dr for a test! yahoo, but that took years of prodding.
I tell people when they complain about sx that *could* be tick disease because I want them to hear that xyz sx isn't always what it seems to be. I never harp on it or give long lecutres, etc. , but most always people want to write it off as nonsense that they could have it.
and we live in the state that for the last 5 years has had the highest number of reported cases! Hello?????!!
what about all your good freinds. ???? your favorite relatives. ? do you mention it more than once or twice? when do you stop saying anything? I am so tired of people talking about this and that when they sound like lyme symptoms that I have had myself and was terribly sick from, but they don't take heed. they think I am lyme crazy.
I must say I am crazy because their complacency drives me nuts. so, what is your threshold for giving up when it comes to people you really care about.?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
Maybe there's different ways to reach different people. Let's say someone is a sports buff, for example, and then they hear about a favorite player getting Lymed. Or they prefer to read some info. Etc. Maybe try to reach them by their particular interests.
Posts: 13171 | From San Francisco | Registered: May 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i finally stopped after, oh, about a dozen times.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I don't press the issue with anyone unless I really think it's crucial that they seek treatment. Just let it be known that you know about Lyme disease and if they are smart enough, they will seek you out when they need information.
If they aren't smart enough .. well... what can you do?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I've given up. They just don't want to hear it and think I'm projecting it onto them. I just smile and say, yeah, I've had that symptom before too. Then if they ask me I say it was lyme related for me.
I think people have to get to the point where they consider it for themselves. If their minds aren't open enough, oh well. You can't force anyone to consider anything.
Sometimes just not getting answers from their docs opens their minds, but not always. All you can do is say: you might check out lyme, yeah I've had that too, or smile and say nothing.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Bless your heart. This is one of- if not the hardest thing to deal with- and friends and relatives are the WORST when it comes to listening. Example...
We had a young girl show up here years ago who was given a death sentence- 6 months to live- by all of her doctors. They sent her home to die.
Not knowing she was on the west coast at the time, I chatted with her and then her mom. So did some of the LN members here.
They immediately got an appointment with Dr. J in CT. She was so sick they had to put her on a stretcher on a plane to fly her there- with the expense of the whole family going- couldn't leave kids behind alone. This was a total long shot, we had no medical way to know she had Lyme, but in our hearts we all knew.
Long story short- or I`ll end up crying- she slowly recovered and was able to go to her senior prom- I saw a picture of it. Amazingly beautiful she is, and she made it! Today she is married and has her own children.
This little girl and her mother listened, no hesitating at all, to some complete stranger, named Tincup no less. Who would do that? But, I am glad, as we all were, that they did.
In the meantime, I`ve had to watch my own friends and relatives suffer for years and then die from Lyme and TBDs. Because THEY WOULD NOT LISTEN!
Offered to pay their medical bills, drive them there, whatever it would take, and they would not allow me to help them.
I carried that hurt in my heart, year after year, torn to pieces with no way to reach them.
Finally I had to convince myself that the best I can do, IS the best I can do. I make sure they have a Lyme Disease Basic Book and a copy of Under Our Skin once Ive spoken to them about Lyme. That is, has to be, my final attempt to reach them.
I can lead them to water, but it is illegal to hold their head under water till they listen.
If I keep pushing it I am the one who suffers (mentally, emotionally, etc), and it ruins our relationships- the last of the precious time I now know we will have together.
I can't count the times- and it may take years- that their family members have come to me after they have passed and said I was right and they should have listened. One relative, while I sat with her holding hand in the hospice and praying with her, looked at me and said she should have listened to me all along- she said she knew I was right. She passed later that week.
I get absolutely NO satisfaction from that. NONE!!! But, I don't know how to fix it. ????
Please, I beg of you, do NOT let their flip, dismissive or ignorant ways eat away at you. PLEASE!!!!
Know you have done all you could, breathe in, breathe out, and move on.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Sad, winderful, excellent story tin
I have come to similar conclusions
Some of my kids have told me not to talk about lyme or they will stop talking to me...and they do
One son has ordered me to never talk to his wife about lyme after she called me and asked what to do about nursing when she took an attached tuck off herself
She got upset wgen i gave her the name of llmd near her and said she could keep nursing but had to take correct abx
But that same son did call me for help when he got too suck with headaches to work . I got hum to llmd
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I got him to llmd...he got better..then denied it coyld have beenlyme ?!?
So the point is when he got bad enough he did call for help
Its all so sad...but all you can really do is let them know you are there
Hows your niece?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
These are all such sad stories. And the pain of having to live through all this - I salute you all for your heart pain, and for caring.
But something in me thinks we are not reaching them where they are. Like to find out what is in their psyche, like what makes them tick, and to work with that.
I'm trying to think about what is done in other areas - let's take drunk driving. You know what's done with young kids sometimes who get caught? They get taken to the morgue to observe what has happened to others as a result of drunk driving.
This gets through their denial, debunks their attitude that they're immortal, cuts through their lack of understanding consequences. This punishment works.
And of course, this happens re systems set up, which we don't have, so we have to be even more creative, as to what will do it.
There was a notice up on a bulletin board about a woman who died recently. Reading through it, I saw it said complications from Lyme disease. So I took a copy.
Then I found myself chatting soon after with campers, and I whipped out the notice and made my point with it. I saw that they paid attention to what I was saying in a much deeper way than my usual pitch about being careful out there.
That's what I'm trying to get at - how to get through in a big way.
I think it could be both a carrot and a stick approach. Stick approach - this is what can happen to you. Carrot approach - this is what you need to do to continue to enjoy life, to have/be/do per your desires.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Since they will often listen to complete strangers before family ... send them here and let us help, Lisa.
You can lead a horse to water....
Tincup.. I so remember that story of Nicole (?)... There were a few others as well that I recall.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Robin, you are right, trying to communicate with people from their perspective is key, but my brain doesn't always work the best now and I tend to be blunt.
Tincup, that story is wonderful to hear and beings a tear of joy to my eye. thanks. Kayak asked about my neice. similar situation. she is 11. she had complete neuro attack this past year and my sister and her husband were both educated about lyme via me, and firmly believed it was or at least could be 90% sure.
then they went to hospital and that was the end of that. the 1st dr was smart and put her on iv abx immediately. the nesxt day my sister went in and a new dr was on and removed the abx without even asking her parents. then told them it's not tick disease and put her on steroids. aw, my poor neicey. breaks my heart to type this.
anyway, she is back in school now and I thnk she still ets headaches and some neuro stuff. slower, not as swift. her spark seems to be dimmed. but I try and stay out of it completely or I will lose it. my mom talks about her 'condition' sometimes and I have told her that I cannot hear any more about that or anyone else who refuses to at least try abx for the symptoms they all know I have dealt with for 20 years!
yes, I come from a very smart family and all are so dumb when it comes to this. they are all very pigheaded so maybe it's a pride thing? who knows, but it breaks me. even my best friend. has all sx. her mom just died from so many sx. now her husband and daughter both having crazy stuff. her daughter has choked enough on food to have Heimlich 3 times and no dr finds anything wrong and still they do nothing. !!
I promised myself I wouldn't get personal in this thread. oops. sorry. we have all heard stories like this, I know.
I just am so so very sensative and I truly care about saving the world. lately I think it be better if I be alone like St Francis of Assisi did and go live in a cave or something. it is so painful to see people young and old to succumb to this terrible thing.
thanks everyone for your insight. I need to hear this from all of you. it is comforting to hear and know from you lyme vets , and of course anyone that wants to share. thanks.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
lymetoo, that is a good idea to send them here. I will do that, but if they wave a doubtful hand at me, I doubt they would look up this place.
I have sent them all links to Under Our Skin and I don't think anyone of them watched it. not even my 2 best friends. everyone is just too 'busy' to care any more.
I wish I had money as I often thought of sending them actual copies of it like Tincup did/does, but they may never watch it any way. I think because I was sick so long I become known as the family hypochondriac or something , so now they just think I over-react.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
my big hope is that my mom's test come back with some answers and they can all see that and maybe they will then listen.
sigh
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Never, unless they are wealthy, which my family member is not.
I never bring it up. People around me know my Lyme disease history, and they can come to me anytime w/ questions.
The family member I would bet $10k has Lyme, babesia, probable Bart is my sister.
Fibro dx, debilitating migraines, had a heart attack last year, she is pretty ill. Breaks my heart. Even if she (we) had $20k to start her w/ ILADS tx, which would have to be IV antibx at this point,
I don't think she's stable/ well enough for tx. Decades of infections.
Trying to keep myself healthy/ drama free/ positive for my kids and husband. And heal my congenital Lyme infected daughter.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Oh, and the answer you hear: 'my doctor did test me for Lyme, it was negative'. End of story to them,
despite educating them on how inaccurate the insurance mandated ELISA test for Lyme really is-
So pray and heal you.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
On the test being negative, I try to tell stories immediately about that, like one of them is my own - I did the IGeneX Western Blot first, with a positive result.
A month later, when I saw a rheumatologist to ask for more abx, he sent out for an ELISA test, which came back negative. Good news, he said, you're negative.
This when I had no more pain due to being on abx and I was herxing. So I blasted him. No one is allowed to talk to me like that, not when I know what's going on.
I think that when people say something, it can be useful to start telling stories that show that the usual expectation of testing being accurate doesn't hold up in all these cases.
Then if we know something about the nature of the testing, we can explain it. Or about the nature of the organism we're testing for, we can explain it.
I was just thinking - information is like food. Are people going to "eat" our information or reject it?! Sounds silly, but both information and food are about intake. Think about toddlers not wanting to eat what's on the spoon, and we play spoon airplane games with them! I almost feel the same thing is going on with Lyme info!
Posts: 13171 | From San Francisco | Registered: May 2006
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
About the crappy ELISA test, I like to say:
'It's such a bad test, they actually passed a law in VA that when you get the results, you also get a document that basically says:
This test is so crappy, that a negative probably doesn't mean negative'
(for a more intelligent way to say that, copied below)
'rate is the ELISA test? Depending on which studies you read, the ELISA has a sensitivity rating of somewhere between 29% and 68%. To put this in perspective, AIDS testing has a sensitivity rating of 99.5%.
The ELISA is so inaccurate that the state of Virginia just passed a law which mandates doctors who test their patients for Lyme, using the ELISA, to inform their patients that if their test is ‘negative,’ that does not mean they do not have Lyme.
A 2005 study conducted at Johns Hopkins University concluded that the CDCs two-tiered testing misses up to 55% of positive Lyme cases.'
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
A lot of people don't know Lyme/ borrelia is just like syphilis (I didn't know that before I found Lyme)
Spirochete, 3 different life forms, burrows. I can say that in 30 seconds and get a look of dislike/ sometimes horror.
People remember syphilis getting into Al Capone's brain making him cra cra. (crazy)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
wow Surprise that is great they put that on the paper!!!!
if someone tells me they had a neg test from elisa I just say in a matter-of-fact way " Oh, yeah, I had ten of those and all came back negative. they don't really work and should be taken off the market. there is only really one good lab in the country that is the most accurate"
they usually either stand there with a open mouth and dumb look, or they ask name of lab. either way it makes me feel better. ha.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
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Member # 41384
posted
Robin you are rigth! I wish all people ate AND listened healthy!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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beaches
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Member # 38251
posted
I am done trying. I've said what I had to say, including telling ppl about the inaccuracy of the tests. People know who to contact if there are questions.
Early on, I had a huge need to educate everyone. I even brought copies of "Under Our Skin" and "Cure Unknown" and distributed them at every school district meeting. Perhaps some gained an understanding; perhaps those books went into file 13. I will never know. But I tried my damndest and that's what really matters.
These days I am focused on getting things back to normal (whatever that is lol) with my family life. My family is my whole world. Creating a good family life is something I have been doing for +25 years and nothing will stand in the way of fhat.
Don't get sidetracked with educating others. Just focus on what your own family needs. Spreading yourself thin helps no one.
Posts: 1885 | From here | Registered: Jul 2012
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dbpei
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Member # 33574
posted
I don't think others can begin to comprehend the seriousness of this illness until they get sick themselves. I am a grandmother for the first time this year and so very scared for my little granddaughter's future.
This weekend, I am going to place homemade tick tubes around my daughter's yard. I also bought them some Lyme Guard tick repellent. That is probably all I can do without crossing the line. I don't want my granddaughter or her parents to get this awful disease.
I dread next year when she will likely be playing out in the yard like we did and like I would let my own kids do when they were little. How sad that we know what we know and it is a reality.
I have learned to educate friends and family in small doses or else it only alienates them from me. But they do know they can come to me if they ever have any concerns. It is so very sad that it has to be this way.
Posts: 2387 | From New England | Registered: Aug 2011
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LisaK
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Member # 41384
posted
beaches, thanks. I agree, but then something in me says I need to do more. to *me* I just feel selfish if I go too long without helping someone do somehting, and right now I can't do much so I talk lyme.
I have been thinking to reach people in a different way..... maybe I will come up with something. but you are right, family is most important
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
dbpei, you are right , and what I think I hear the most out of what everyone here is saying- less is more.
I will try and relax and bite my tongue. I have lately tried to just walk away when people start talking about their sx in a group setting. it hurts my guts to stand there and listen.
I hope I can do this less is more thing. it will take every fiber in me
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
I still think you have to put it across in THEIR terms, not ours. And to find out what that is, what they pay attention to, what they wouldn't want to lose, etc. Sometimes it takes people in a field they follow who get sick for it to make an impact.
Try to get creative.
Sometimes I ask them to think of a time they were sick and describe it. Then I try to piggyback on it with a comparison to Lyme.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
i've already suggested maybe my friend could have lyme, but i always get the "nothing everything is lyme" "you dont have EVERYTHING wrong with you"
LOL. ok, well maybe? Posts: 315 | From Allentown | Registered: May 2014
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One thing I do is ask people to look at a list of Lyme symptoms and get back to me about whether they think they match any. Sometimes they need to see for themself.
Posts: 13171 | From San Francisco | Registered: May 2006
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