My ID doc told me same thing bejoy was told. I did not look like a Lyme patient.
I was told today that one of my employees had said "anyone can tell something is wrong with her, she is not as pretty, does not fix her self up as much and is not out here on the floor talking and laughing with us as much....Wow, I knew they had all talked about the 50 pounds I had gained but I did not know they cared enough to unnderstand something was really wrong with me.
It makes me sad and happy at the same time. I am at least finding out people "except my doctors" do realize that I dont have the life I used to have.
So what does a Lyme patient look like. I have a paper that says I am positive for Lyme but since I dont look like a Lymie I cant be treated. I want to make sure I look like one for next dr. appointment.
Posted by sixgoofykids (Member # 11141) on :
When I leave the house, I put on makeup ... I used to sell it, so I know how to add some color back in my pale face! I fix my hair. I look just like anyone else and no one knows I'm sick at all.
My friends intellectually know I'm sick because I am not doing all I used to do, but they can't "see" it.
There are two of us who just got diagnosed within a couple weeks of each other. People will send around prayer requests for all kinds of people -- people who have cancer, kids who are ill, etc. -- but never for us. I don't take it personally, I know it's because they don't understand how bad it is and the fight we're going through to regain our lives.
So, I think a Lymie looks like everyone else. I don't know in what way they'd look different or not like a Lymie! I did lose a lot of weight ... since I've eliminated gluten I gained some back, but I'm still pretty thin. But I hear it's even more common to gain weight.
I'm glad your co-workers know you aren't yourself. They notice and they care. An LLMD will go on your symptoms and your tests ... forget about the ID ... how would he know what a Lymie looks like since he's probably never diagnosed one??!!
Posted by cantgiveupyet (Member # 8165) on :
My coworkers were the first to notice something was wrong with me. One of my managers said, gosh have you always been that thin...you look like you are withering away. I thought nothing of it, but more and more were saying this.
I got mad, and tried eating more and more, i was clueless something terrible was wrong.
Then after I returned to work briefly after being on short term disability, soooooo many more said I looked bad, I lost even more weight (i was down to 90lbs at that point) my clothes hung on me. They were stunned and said I looked very pale and sick.
Dr said i was healthy, well nourished.
Posted by Lisianthus (Member # 6631) on :
I understand your feelings exactly Your.
There is a pic of me on my yahoo profile in my signature at the bottom of my posts. Yes I smile and don't look sick, most of us don't!
Just because I don't wear my illness on my sleave doesn't mean I'm not sick. Its the days that arn't so bad is when I go out. On my real bad days I don't leave the house!
No one would ever know I have Lyme unless I told them, and when I do tell people they almost don't believe that I am ill. They say things like "Well you look great" or "You look so healthy".
You can't see cancer either, and most people with cancer don't look sick until they start chemo, it doesn't mean they don't have a severe illness!
Hang in there Your, a LLMD will believe you.
Lisi
Posted by Lisianthus (Member # 6631) on :
quote:Originally posted by sixgoofykids: how would he know what a Lymie looks like since he's probably never diagnosed one??!!
Very Good point Six!!!!
Posted by 5dana8 (Member # 7935) on :
If you look at the open eye picture film clips many are very average weight & appearance.
I am too thin but do pass for normal looking on my good days. But on my bad days with no makeup -dark circles, pale & a dazed look about my face at times. Sometimes I have a tendency to slump when I am tired & shuffle my feet. When I am herxing my eyes get red & glassy looking & my eye lids droop.
But sometimes when I go out on a special occation & use tons of makup & spend extra time with my hair, people tell me I look good & can't believe I am sick.
They don't get to see me most of the time at home looking really bad. And not putting on a smilely face & trying extra hard to be animated & funny...can't keep that up too long anyway-it's exhausting.
here's a link to a very good article Melanie posted" But You Look Good..."
Blessings Dana
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by yourtroubl: So what does a Lyme patient look like. I want to make sure I look like one for next dr. appointment.
Well, first of all, don't wear makeup.
How can the doctor see your honest complexion and dark circles when you cover it all up?
Simple hairstyle. Simple clothing, no jewelry.
I always take pain meds before an appointment, to make sure that I'll be able to drive home, but then, of course, the doctor doesn't see me when I'm fatigued and in pain.
I always try to make a list of things to cover and which meds I need, and I always forget something.
Carol
Posted by Kayda (Member # 10565) on :
I had to laugh when you said, you have a piece of paper that says you have Lyme, but the dr. said you don't look like you have Lyme and so can't treat you.
For goodness sake what excuse will they come up with next????
Kayda
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Carol in PA:
I always try to make a list of things to cover and which meds I need, and I always forget something. Carol
i always type up a list of my problems; MOST IMPORTANT first and least important gets to the bottom. i ask them to put their copy in my medical file, and it's a way for them to use when DICTATING MEDICAL INFO FOR OUR FILES SO THEY DO NOT FORGET!!
i keep other copy and write down their comments. i also have typed in paper given, to SEND ME A COPY OF EACH MEDICAL REPORT!
i note all appts., labs, xrays, misc. on a SEPARATE CALENDAR. i note what was done that day:
visit, blood tests and which, ANY MEDS PRESCRIBED AND WHICH ONES, this is helpful for bills when they come to remind my lyme fog brain!
then when i get the reports, i check it off for the date saying RECEIVED and date!!
i also call after 2 weeks as a followup if they didn't send it prior! some of mine have been lost so dr. redictates ... AGAIN MY TYPED LIST OF WHY I WAS THERE HELPS IN REDICTATING LOST DICATION!
also, look at the newbie links/advise i gave you .... i believe it's right before the LONG SYMPTOM LIST since i keep adding; things change.
look for SPOON THEORY thread; it's a good one to send: family, friends, co-workers, those close to you to help them understand! Posted by shazdancer (Member # 1436) on :
We just can't win. If we try not to act sick, they say we're not sick. If we tell people how we really feel, they say we're not sick, we're just whiners!
In areas like Massachusetts and Connecticut, however, it appears to be changing. If I mention Lyme to someone from there, invariably that person knows someone who got very ill.
Posted by treepatrol (Member # 4117) on :
You have to get away from the id look like a lyme patient sheeeeeeeesh
Posted by Geneal (Member # 10375) on :
Do the new gray hairs count? Or the wrinkles under my eyes from squinting from bright lights/sun?
No...it is easier to say I look like someone with Post Traumatic Stress Disorder...whatever that person is supposed to look like.
Of course you know all of these docs have some kind of x-ray vision where they can look inside you and
determine exactly how sick you are and how you feel as well as what is causing your illness. (Ha-Ha)
That is what I told one doc after I requested a blood test for Lyme, only to be told "You don't have that."
It is a shame that so many doctors take the oath to treat sick people, but only continue to feed their ego's with each dismissal of significant symptoms.
I guess though, I don't mind not looking like I am about to die, even though at times, I have felt like it.
Probably would have scared my children to death.
Maybe we should turn this around and say "Yeah, I feel like death warmed over, but da%#, I look GOOD!!!!!
Heres sending prayers to all to feel better and keep looking "marvelous"!
Geneal
Posted by Michelle M (Member # 7200) on :
Hi Your.
People with lyme can look just like anyone else.
Here's a picture of a person with lyme and babesia WA-1. Do I tell everyone? Nope. The people who are important to me understand. I am smiling because I am doing what I love -- photographing BRIDES --! A year ago, I could definitely NOT have shot for five hours straight. There are bad days when my head hurts too much to smile at anyone. However, staying in treatment is helping. THAT'S something to smile about! You must take the leap and find an LLMD. I shudder to think where I would be now with my MS diagnosis while lyme and babesia multiplied in my body, unchecked. You CAN get your life back.
The beginning stage, you look like Fu Manchu. The 2nd phase, like a mixture of Rocket J. Squirrel and Superfly Jimmy Snooka. The 3rd phase, like the mixture of the cryptkeeper and Dom Deluise.
Don't worry, I'm not pretty anymore either.
[ 28. February 2007, 10:37 AM: Message edited by: Kendrick ]
Posted by Geneal (Member # 10375) on :
Dear Michelle,
You look Maaarrrvvvveeellllooouuuusss!!!!
I am glad you are doing better and back to doing what you love.
Geneal
Posted by 5dana8 (Member # 7935) on :
Holy Canoly Michelle! You're beautiful! Inside & out too
I am so happy to hear you are doing something that makes you so happy.
Blessings Dana
Posted by Michelle M (Member # 7200) on :
Hah! A blow-dryer and a little makeup will do wonders for fooling everyone into thinking you're perfectly A-OK. Other days -- don't LOOK!!!
I choose to think that getting lyme was a divine favor.
Else, I would never had recognized that my daughter had lyme. Ducks would never have figured it out. Maybe she'd have been in a wheelchair by now, if I had not gotten lyme first.
Cognitively and otherwise I was unable to continue in my lifelong career in law. So being really sick actually forced me to reinvent myself and pursue something different that I happen to love. Had I not gotten lyme I may never have made the leap.
I see perfectly "normal" looking people all the time at my LLMD's office. However, having lyme myself, I know better!
Michelle
Posted by 5dana8 (Member # 7935) on :
I hear ya. It's not something that always shows- the cognitive/fatigue/flu like symptoms ect..problems. When I am having a good day & do hair & make-up big time & put on a happy face my friends & family say " you look great...you must be feeling better"
I know they mean well but it drives me crazy.
Posted by Lisianthus (Member # 6631) on :
Great pic Michelle, its nice to see what other people look like (face with the name)
This is me......
Posted by Michelle M (Member # 7200) on :
Cute pic -- beautiful hair, Lisi!!!
Hey, "you must be feeling great!"
(Couldn't resist after Dana's post..have heard that SO many times!)
Michelle
Posted by Kendrick (Member # 10990) on :
Here's my picture, and I hear the same as you all. I looka good, don't I? And I kiss on the first date.
By the way, I'm single and taking bids to go out sometime.
[ 28. February 2007, 06:06 PM: Message edited by: Kendrick ]
Posted by Lisianthus (Member # 6631) on :
Thanks Michelle, You have great hair too.... I always wanted to be a blonde..
Awwwwwwwwwww Kendrick you look soooooooo cute!!!!!
Posted by Kendrick (Member # 10990) on :
Yes, both of you have nice hair, and are the Lymenet Hotties. I always wanted blonde hair too. Some people think that men lose their hair, but men don't. It just migrates downwards to different body parts.
Posted by Geneal (Member # 10375) on :
Okay Kendrick,
Now sit..........Stay........Good boy!!!!!
Geneal
Posted by Michelle M (Member # 7200) on :
Excellent Photoshop artistry, Kendrick!!
Michelle
Posted by cantgiveupyet (Member # 8165) on :
michelle- you look very happy in your pic. I like your hair.
I pull my hair back and put on a pink breast cancer awareness hat when I go out. I think im known as the girl with the pink hat lol!
I dont know when the last time was i blow dryed my hair.
im so glad that you are doing something you enjoy.
Posted by Beverly (Member # 1271) on :
WOW, great pictures all....
I would have to say I looked terrible in the very beginning of my treament,(and before that) so I looked exactly how I felt. I was too tired to put make-up on and I had gained so much weight I lost intrest in how I looked.
It did get better though. I eventually lost some weight and I can now dress up some on my good days.
But I think overall, we can look just like anyone else, because no one can *see* the headache, or the pain.
Don't worry your LLMD will know what lyme does to us.
hugggssss to alll.... Posted by meg (Member # 22) on :
When I take my makeup off, I'm very pale also....such a difference from the rosy cheeks I used to have.
It's just another excuse for the docs to use. You don't look sick enough, sad isn't it?
I guess the answer has to be to leave the makeup off and dress terribly!
Here's mine This is actually a bad hair day for me!
Posted by Lisianthus (Member # 6631) on :
Dang Meg you are a TRUE HOTTIE! Make up or not
Great hair too Posted by Nebula2005 (Member # 8244) on :
![[Smile]](smile.gif)
![[Wink]](wink.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Big Grin]](biggrin.gif)
![[woohoo]](graemlins/woohoo.gif)
