Back story. I had all the symptoms, giant rash on my back, night sweats, agonizing joint pain. the one thing that got me to a doctor was the bells palsey. Everyone I know was really concerned for me (possibility of a mild stroke at 32 would scare anyone). when the ct scan came back all clear but the blood work came out Lyme positive across the board, it seemed everyone but family just went"oh, hes ok now." 21 days of doxycycline made my spirochete back off, which i'm really grateful for, but I still feel it. The other day i tried to explain to my oldest friend of over 20 years that I still cant think as well as before, that i still lose words and that I cant hang out half the time because I feel like i'm 82 years old.He just said I'm being a hypocodriac, that its all in my head.I dont really know how to deal with that.I'm still alittle angry about it.Has anyone delt with something similar? Howd you deal with it?
Posted by treepatrol (Member # 4117) on :
Sounds like you still have lyme get a LLMD. Tell "your friend its not just in your head its in your body yet" Get treated 30 days didnt take care of it. Read this
then go to Newbie links at top of page in the medical section and read.
NewbieLinks Posted by Linda LD (Member # 6663) on :
At least you have your family--this happens so often too so many--only my immediate family (husband and children) believe I have LD--and they have it too! LOL
Ya know--we don't have LD in the southeast, plus, you look so good...
Hang in there, Linda
Posted by lpkayak (Member # 5230) on :
i can so relate to this..i lost a friend of -let me count now-40 yrs because of this...she was making fun of my complaints to a group at a party-you know how it is when you walk into a conversation and it stops...the worse the disease gets(the more time that goes on) the harder it is to make friends-and i don't have the support of family either---most of them have it and are in denyal and if i talk about it they disappear and act like i'm crazy etc. etc. it really hurts-and then i worry about them not being treated and feel guilty that i can't help them...let me know if you if you want to be "email friends-i'm older than you-but we might still be a support for each other.
Posted by SuZ-Q (Member # 5903) on :
Hi, Sorry you are going through this when you really need support. Try the website www.myida.org or search for "But You Look So Good". I emailed several pages from it yesterday to a Doubting Thomas in my family and I ordered copies of the pamphlets. I haven't talked with them about it yet to get their response, but I wanted them to know how we feel when they see our illness as only psychological. Maybe you will find something useful for your situation. Good Luck! Suzy
Posted by lymesly (Member # 8528) on :
Read tequeslady 's thread "I'm so depressed". She had almost the same thing happen. Horrible!! Posted by HEATHERKISS (Member # 6789) on :
My 2 friends from when I was age 13 dropped me like a hot potato. I'm 38. Still hurts.
Posted by chroniccosmic (Member # 7789) on :
My friend of over 20 years just stopped calling and wouldn't return my calls. We practically raised our children together, went on vacations, supported each other when our parents got old and died, knew each others families like our own. I miss her so much and try every day to understand what happened.
This illness takes so much from us. It is such a void to add to all the other aspects of this disease. I'm also thinking it gives us something too but haven't quite figured out what. Posted by lymesly (Member # 8528) on :
quote:Originally posted by chroniccosmic: This illness takes so much from us. It is such a void to add to all the other aspects of this disease. I'm also thinking it gives us something too but haven't quite figured out what.
I'm also realing trying to see what I am suppose to be learning here. What is this giving? What is the lesson?
Posted by Mo (Member # 2863) on :
Jeez...
I'm stunned as to how many of us this has happened to.
It is very difficult and perplexing.
I had my best friend from childhood do the same thing, very strange and incomprehensible behavior when it wasn't just me, but my kids in horrific condition.
I confronted the audacity in a pointed letter, and cut myself loose from the 'freindship' as I had to get on with the business of survival..
then saw her two years later at my HS reunion, I was donning a picc line.. and she refused to even say HELLO to me. Physical, almost comical avoidance the entire evening. Unreal.
I've been in several local news articles, and I know we have circles that overlap and my families story is 'out there'. Still, there was this behavior even so.
All this is very bizzare indeed............ I'm truly sorry for all who experience it.
Stand up for your validity, communicate the best you can your situation (the disease, afterall..this could happen to them, too) and your feelings and worth.. and draw healthy boundaries if/when necessary.
Mo
Posted by mlkeen (Member # 1260) on :
Welcome to lymenet-
Sad but true, the folks here will be more understanding that your other friends. It is just too hard/scarey for people to deal with friends that are sick.
We deal with it by venting and learning here and by relying on our inner strengh to get us through the tough times.
Posted by Andie333 (Member # 7370) on :
I've had some surprises in this area.
My two oldest friends (both 30+ years' friendship) have been faithful, supportive and loving. So have my SO and my Mom.
The kids in the family all seem to understand that something is horribly wrong, but their parents are...well, ambivilant. The feeling I sometimes get is that it's a shame I'm so unproductive. It is obvious to them I'm seeing the wrong doctor, getting the wrong treatment or simply settling into this limping life.
The surprise for me has been several neighbors/ friends who seem disbelieving and downright hostile. I have NO idea why.
One night I found myself trying to prove to them just how sick I really am, and I realized what I was doing. I thought this was nuts.
Since then, I've been keeping a cordial distance. Otherwise, it's just too hard on my heart.
Andie
Posted by mimi (Member # 6680) on :
well I can relate to this too. I didn't tell anyone for a long time then I told one of my closest friends and haven't heard a word since. My mom doesn't believe I have lyme because she was dx. with MS and she thinks I have it too. well we all know how that goes all the blood tests in the world can't convince some people. My dad said oh well a lot of people have to take abx. for a month to get rid of it. I can relate and I feel for all of us. I keep thinking someday maybe somebody will understand us. Take care of yourselves and know that we can all support each other. mimi
Posted by lymeout (Member # 8045) on :
My husband and I just endured another New Years Eve, trying to console our daughter whose friends all bailed on her. A sweet, considerate,beautiful girl who was recently described as one who lights up a room upon entering. BUT, she doesn't/can't drink, which translates to kids her age as "no fun". She has had some of the most insensitive things said to her by students AND teachers. And Family - Over the holidays, she chose to visit my husband's mother, who is very supportive, while the rest of us went to see my sick mother and extended family. Not one of her cousins even asked how she was. Into how many pieces can a heart break?
Posted by AP (Member # 8430) on :
quote: Into how many pieces can a heart break? [/QB]
Only we "lymies" will know.
Posted by HEATHERKISS (Member # 6789) on :
Well,
I don't think it's just lyme. I think it's chronic illnesses in gerneral.
When my grandmother was dieing she was so pissed becuase no one would visit her. Mind you.... she was the sweetest woman until she got sick.
I would sleep over her house 2x a week to keep her company. Not even my father her own son did that.
It hurts,
Posted by chroniccosmic (Member # 7789) on :
Lymeout--
I have a very sweet 18 year old daughter to loan out as a pen pal if you think that will help. Posted by daniella (Member # 6753) on :
copperhalo,
It happened here too..
I lost 3 life long freinds since childhood...THey just can't comprehend what is happening and have to explain it in a way that makes sense to THEM. It is very disturbing, but,.. they make it make sense in their own minds somehow, and often it has nothing to do with the truth of what we are relaying to them.
I found the silver lining in being able to now pick friends by how deep they are or by how open minded and aware they are. You will see this expereince although not pleasent in many ways will leave you on a higher level of concoiusness and aware of sooo much more than before.
I think we would all agree on this positive aspect if none other..so if you could see this as a journey out of the 5 senses and into the sixth(where most people do not get to go mind you) maybe then it won't seem so hurtfull.
Sorry that you are going through this!
daniella Posted by vitch (Member # 8094) on :
Fair weather family, fair weather friends.
Posted by hopeful123 (Member # 3244) on :
ah, friendsssssssss
Posted by pippy (Member # 6005) on :
Hey copper, i'm late to the party but know exactly what you are saying. My mother has been extremely supportive of me and believes me. She defended me to family...I did not want to tell anyone but she did and was told it was a fad and all in the head.
That really hurts...
My in laws are pretty much the same...they say I need to meditate and do yoga...maybe so but I also have lyme.. they refuse to even utter the word!!! Saying the word somehow is so scary for them and they believe what you say comes true....esoteric stuff
maybe they're right but they refuse to go deeper or get involved because of FEAR!!!
Their turn will come...its our turn right now... maybe when its their turn they will understand and then they will see the truth that everything they say about you is their own self and their lies sent back at them...its all about them..
That is what this has taught me if nothing else... Its all about them and their fear and unquestioned beliefs about illness...its too terrifying to look at...like death..the worst that could happen just walked in the room and they are faced with it. They cannot deal but someday they will have to...its not avoidable for them...remeber that. love and peace and hugs
Posted by siggy (Member # 8654) on :
It seems friends/people expect one to be a certain way. They have expectations that are not realistic when one has lyme. And then...when one continues to dissapoint them, they rather leave you in your misery. Sort of understand them...you know "don't look ill etc". It is incomprehensible to someone who is well that it simply doesnt help to pull yourself together. I think it is too hard to understand. And since one looks the same with or without lyme, it is a bit scary. But yeah... when you need friends the most... Maybe helps?? Posted by siggy (Member # 8654) on :
It seems friends/people expect one to be a certain way. They have expectations that are not realistic when one has lyme. And then...when one continues to dissapoint them, they rather leave you in your misery. Sort of understand them...you know "don't look ill etc". It is incomprehensible to someone who is well that it simply doesnt help to pull yourself together. I think it is too hard to understand. And since one looks the same with or without lyme, it is a bit scary. But yeah... when you need friends the most... Maybe helps??
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