I think my great neice who had a tick on her head "unattached" and had the "flu" days later has lyme.
I think my neice by marriage who has Lupus, Fibro, CFS and something else and is dependant on morphine lollipops has lyme.
I think a lady I am acquanted with who is pre MS has Lyme. She says she had a false positive. THERE IS NO SUCH THING AS A FALSE POSITIVE!!!!!
I think my husband who is sleeping all the time and every other phrase out of his mouth is "I'm tired" or "ZZZZZZZZZZZZZ" has lyme.
I think my nephew who has had multiple ticks pulled off him who is always complaining about his stomache and is as skinny as a bean pole has Lyme.
I think a family friend who "used to have Lyme" has lyme.
I think my mother who is not absorbing any nutreints and has digestive problems w/ stomache and colon has lyme.
I think another adult nephew who has landed in the ER twice with mystery illnesses has lyme.
I think his fiance' who has seizures and problems w/ her knees and is dependant on pain killers has lyme.
I'm friggin losing it!!!!!!!!!! I've explained my Lyme to all these people. Do they not get it?
Am I crazzzzyyyyy?
[ 15. October 2005, 11:30 AM: Message edited by: HEATHERKISS ]
Posted by lyme_suz (Member # 7628) on :
Of course they have lyme.
Posted by Michelle M (Member # 7200) on :
Hey Heather. NOPE. You're NOT crazy. I do this, too! Mostly, they laugh. Albeit uneasily sometimes.
I definitely think my mother has Lyme, but I know she'll never get tested.
My girlfriend -- bitten many times when younger, has horrible intermittent knee pain. I'm SURE she has Lyme. She goes to the knee doctor. I've almost got her talked into an IGeneX test. To "humor" me.
Now, I don't imagine EVERYONE has it, but when you raise awareness - yours and others' - it sure gets interesting how many people MIGHT...
Michelle
Posted by livinlyme (Member # 3773) on :
lyme_suz I second that vote!!!
as for do they get it??? Of course not....
There is no benefit to having something that even the "stars" refuse to admit they have.... heaven forbid any one of the most admired in Hollywood or the famous of the sports world admit to having Lyme disease, it would shame their holy names and totally ruin their image!
After all isnt it Montel who not many years ago anounced that he has MS.. and refused to hear anyone suggest that he has Lyme Disease. I am sure some people on this board suggested to him that he suffered not MS but most likely or difinately LD. I know I wrote to tell him.. but I can bet his doctors wrote it off too cause it would make too much sense to treat something that can be fixed. meanwhile distract the people from the truth by having them think a STAR has MS..
Oh my word ... and to think how much money will pour into the funding to support the research for MS all because famous people have this horrific disease ... meanwhile there are only a few famous writers who admit to having Lyme disease... wake up people, wake up.. Sorry, that was a private joke .....anyone here familar with Toe Jam and Earl???
I sort of feel like I should be the one Screaming that in everyones ears... WAKE UP!!!
this in and of itself is a tradgety.. to those who do know the real truth.. now if only the government would own up to what they have done.... for those who have not read the book LAB 257 by Michael Carroll, about the tradgety that occured on Plumm Island right off the shores of NY and Connecticut....
I suggest you read it!! I plan on finishing the book now since I could not go past chapter 3 I became so concerned about my suspicions and how they have been confirmed... Linda D
Posted by Carol in PA (Member # 5338) on :
Heather, Oh my, yes. Once you are familiar with the constellation of Lyme symptoms, you can see them a mile away.
Carol
Posted by BugBit (Member # 7829) on :
Just a note;
People who take pain killers for chronic and debilitating pain probably are not "addicted". That is a horrible and negative term for what i think you really mean is that they are "dependant".
For one thing, people in chronic and debilitating pain usually need something to get barely functional, and usually do not get "high".
For another thing, "addicted" has all sorts of negative and stereotypical connotations that have nothing to do what is really going on.
and third, would you call a diabetic taking insulin everyday "addicted"? I don't think so.
I am just starting a treatment for chronic and debilitating pain. It is exactly for these reasons and the attitude displayed above, that I was reluctant to help myself.
Please rethink your personal beliefs on this topic, or at least, keep them to yourself. You do not help anyone by perpetuating ignorance. I only hope that when you hurt as muuch as those who need these medications, you can get them, because spreading this stuff only makes it more difficult for those who do need them. *Bit*
Posted by HEATHERKISS (Member # 6789) on :
Your right. I'm sorry. I'll change my post. Posted by bel1268 (Member # 4133) on :
We have the same situation in our family but I kept bugging my mom and she was finally diagnosed last year. It took me a year to convince her to see LLMD but she is now feeling so much better. She knows how I feel now because she thinks my dad is infected and he will not hear of such nonsense...
It took two years to get my uncle to see LLMD and he was diagnosed 10 days ago. He told me how greatful he now is that I did pester him so much. Sometimes it takes a lot to get through to people but it does pay off.
Now to get my aunt tested is the next step but she realizes she has it too but uncle is much sicker so they are addressing him first. She hopes to make an appointment very soon.
My husband is definately infected too but I seem to be fighting a loosing battle with him. If he does not come around it will end our marriage but I am still trying and taking things one day at a time. Matter a fact he is sound a sleep on the couch as I write this. Such a beautiful day and he sleeps it away but swears he is fine.
I see so many of my early symptoms in him. I feel like screaming some days as sickness is all around me. We also have 3 sick dogs, two are chronic.
Posted by HEATHERKISS (Member # 6789) on :
Stacy,
Thanks for your imput. I will nag pester and bug my people.
Posted by cgooge (Member # 7922) on :
I really do not understand why so many people do not want to visit a LLMD to at least explore the posibility. I understand maybe about the money but if it turns out you don't have Lyme then continue with your life....
I'll try anything to get my wife better...
Posted by Boomerang (Member # 7979) on :
I'm like you, Heather......I wonder about anyone's illiness that I hear about.
I think the problem is not really with the people who are sick......but with the medical community. It's no fun being treated like you're a fool for thinking you have Lyme. Being told your Titre test was negative, so there is no way you have Lyme.
Even better is when you ask for a copy of your medical records and you see typed in the records..
"Patient's wife mentioned possible LIME disease".......
Dummies.....
Posted by livinlyme (Member # 3773) on :
Cgooge, as my aunt says "if you are sick and no one is giving you an answer as to "WHY" and leading you to finding an answer to being back your health, you leave no stone unturned until you find the truth!"
Seek and ye shall find!
And Boomerang,,, I agree it is not the people per say it is the medical community's responsibility to "inform and heal" those who are sick regardless of what they "think" is wrong! For them to have a preconceived idea of what is right and what is wrong is a crime in the medial community, medicine is forever changing and advancing.. rather than stick with old rule of thumb they need to remain open minded and seek to find answers.. LindaD
Posted by lyme_suz (Member # 7628) on :
It says a lot about you that you have all that concern for others.
I encourage my friends who I "know" have it to read the newbie links.
I have a friend who HAD lyme yrs ago and now has fibromaligia, depression, fatigue and more. I love her dearly and sometimes want to load her in car and take her to LLMD or strangle her.
For me, I am learning to respect boundaries, do what I can and pray. Need to pray more.
Would like to give you a graemlin, but this is my first smile I've managed.
Take care, Susan
Posted by Andie333 (Member # 7370) on :
Not long ago, an acquaintance died in her late-40s -- the dx was ALS.
It's hard for me not to wonder...
I've sent info to several people who wondered whether or not they (or friends) had Lyme after hearing about me. It's hard, though, to convince people that traditional ducks may not be the best option and that the cycle of specialists can just be a waste of time. Docs have a lot of power in this society, and what they say carries weight with people.
This is all hard, because I know how much worse I got in the last of the 9 years my own disease was undiagnosed. I wouldn't wish that on anyone!
Andie
Posted by Boomerang (Member # 7979) on :
I'm finding that same thing here. Like I mentioned, I requested medical records from ER visits, etc. Those came in fairly quickly.
The records from the Neuro still haven't arrived. I find that kind of strange. What's so tough about getting thing released? We've filled out all the forms, twice.......
It makes me curious whether the docs request a review of the records before they release them?
Posted by HEATHERKISS (Member # 6789) on :
I don't know Boomer. It just isn't right!!!!!
Posted by CharV (Member # 5849) on :
I also have many friends and family members who seem to be suffering from undiagnosed Lyme disease. They don't want to hear what I tell them about getting tested.
I also have a bad habit of looking at strangers in the grocery store, at sporting events, etc... and thinking that certain people have it by how they look, carry themselves, etc...
I live in a highly endemic area, so it's fairly likely that many, many people are infected.
Posted by livinlyme (Member # 3773) on :
Hey Boom, Don't wait on that ..... My neuro,, never sent them after 6 months wouldnt discuss the test results either... and they were positive on the ELISA titer.. finally had to get my lawyer pull them from her...had the tests run in April 2001 and finally managed to get them in December 2001... not something you want to wait on if you have it and never got treatment before... I just dont get the conspriracy on this.. it really runs deep or lack of education on the MD's parts...
Posted by lymex5&counting (Member # 7202) on :
I totally agree.
Everyone I have finally talked into getting tested has been positive.
There are still so many that won't listen. This is so frustrating to me. I really tend to dwell on it. The ones that really get me are the ones that it is almost so obvious it is scary. Ie. the lady that works at the Vet I take my animals to. Rheumatoid Arthritis, I would consider her job HIGH RISK.
The people that say "Oh you have Lyme disease, my sister had that." And I ask how she is. "Oh no I said she HAD Lyme, she just has Fibromyalgia now." DUH! I feel like slapping them.
Posted by HEATHERKISS (Member # 6789) on :
And I thought I was loosing my mind!!!! Whistle, whistle whistle here mind ..... where are you?
Some how I feel better knowing I'm not alone even though I wish that no one else had to go through it.
Sometimes I think maybe I might be lucky to be getting treatment now before the Medical community figures out how many people have the disease / epidemic. Then I wake up.
It's making me crazy. And believe me people think I'm crazy.
Posted by Linda LD (Member # 6663) on :
the state of Tennessee leads the nation in the use of pain relievers and perscriptions. We are also really fat.
This is due to our "lifestyle" and "culture" according to the experts.
So much horse manure--the whole dang state has lyme, oh, I'm sorry--we all have Southern Tick Associated Rash Illness (STARI).
Linda LD
Posted by Boomerang (Member # 7979) on :
Hey back at ya. You know that makes me madder and madder the more I think of it. We've requested those records from the neuro twice, and still haven't received them. Even had to send a $20 check cause we wanted them released to us, instead of to another doctor. Sending them to another doctor was free, for us to ask for them for our own personal reasons cost $20.
Still haven't received them. I suppose they think I'll forget about it. After reading your post, I think not. That just infuriates me.
We're not waiting on this neuro for anything, I gave up on him. We've since been to a LLMD, and things are looking up a bit. I just asked that he send the records to the LLMD, and so far they haven't received them. I also paid the $20 for them to be released to us........nothing yet!
How ridiculous is that?
quote:Originally posted by livinlyme: Hey Boom, Don't wait on that ..... My neuro,, never sent them after 6 months wouldnt discuss the test results either... and they were positive on the ELISA titer.. finally had to get my lawyer pull them from her...had the tests run in April 2001 and finally managed to get them in December 2001... not something you want to wait on if you have it and never got treatment before... I just dont get the conspriracy on this.. it really runs deep or lack of education on the MD's parts...
Posted by HEATHERKISS (Member # 6789) on :
Is your nuero in your town? I sat and waited for my file at the GENERAL PRACTIONERs office.
It took a while but it was worth it. My Doctor recognises me and knows my name.
Posted by treepatrol (Member # 4117) on :
And I think its transmitted a heck of a lot of more ways than bug bites too Fluids
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THERE IS NO SUCH THING AS A FALSE POSITIVE!!!!!![[confused]](graemlins/confused.gif)
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Fluids