posted
How many doctors does it take to make a diagnosis?
No one knows!
I wasted my time once again. We got there 35 minutes early. Walked right in and he was the first guy I saw. I didn't like him when I saw him!
I went straight back there and the first thing he said was I don't think I can help you. I don't know why they sent you to me. And blah blah blah...
Real negative. And kind of rude. He hooked the wires to me and told me to relax...which I was because I had just woke up. And he took them right back off.
Then he did the echo and checked 2 spots for about 5 seconds each. Then he said,"I am donel and you are slimy."
Everything looks good. It took me longer to go to the bathroom when I got there! I was in and out 30 minutes before my appointment time was! He didn't check my whole heart. I think he missed something. He wasn't real serious. And seemed like I was just a waste of his time.
So, I don't know now. They want me to go to Nashville to see a ped. rheumy. I don't think it will help and I keep trying to tell everyone that at the beginning(over 2 yrs ago) the bone stuff was my major issue, but now I wish I could go back to just that.
It is now the least of my problems and no one is listening to that.
They are letting me decide whether or not to go to the ped. rheumy, but I don't want to. I hate going on very very VERY long trips just to be disappointed once again. He will be just like all the others. Can't help and send me on my way.
I need someone else.
I am starting ot think I am crazy. Like my brain is making it all up. I feel like something is wrong, but no one can find ANYTHING. What if I am crazy? Maybe I am. I am not sure anymore.
I just don't know what to do now. Right now my neuro symptoms are under control. I haven't been depressed or having outbursts of anger and stuff lately. Lately it has been sleeping, stomach, head, just plain don't feel good type of stuff. This is also the last week of school so I am very stressed out. I am behind from missing from being sick and the doctor today.
Also, I went all the way to Huntsville and back and had time to check in at school for 2 of my classes! A MAJOR wasted trip. I think he missed something. I don't think he looked in the right place. Or even really cared. He was such a butthole really!
Any ideas? What should my next move be? Should I go to the ped rheumy? The LLMD is not an option right now(even though I wish I could go) I have to convince my doctors first that no one else can help me. So, what specialty should I go to now?
I just don't know anymore. Sometimes I think I am crazy and other times I cry myself to sleep knowing something is wrong, but knowing that no one else knows. It's like my illness and myself are locked in a box that no one can look into.
Well, at least I got to play tennis for a couple of hours to get my mind of things for a change. It seems to be the best medicine I have taken so far!
Well, off to bed, stressed, tired, and feeling lonely.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Well, I hope he didn't miss anything...but glad
your test didn't immediately show something wrong.
IMHO, I would call Igenex and order the test kit.
Put it on the table, the counter anywhere it would be a constant
And very visual reminder/cue.
Ask your parents to pay for the test. Then ask again. Then ask again.
I would go back to the GP and have him sign the script and take the blood.
I would take the money I had saved up for a motor bike and spend it on something
A little more important....Like you.
Wait 2-3 weeks, get results and go from there.
Hope you can finish your last week of school okay.
Maybe you can work a little more over the summer,
Save up your money and get the Igenex test done.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
please get to an LLMD. somehow, some way. you're not gonna get anywhere until you do.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Christi, please at least order the Igenex Western Blot kits (free) before you go on vacation. (Or get your mom to if there is some problem with your age.....).
At least you will have the test kits THERE if you want to use them. If you don't, well, no harm done, is there?
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
I appreciate it and know that. But, I have told my mom over and over again that I NEED the test and she refuses saying she isn't paying for it. I have to figure out what to do next. They want me to go to the ped rheumy and I DON'T WANT TO GO!!!
I DO NOT need a Rheumy. I don't know what I need, really. I mean, other than a LLMD. But, they said we aren't going that far to see one. So, what am I supposed to do? Exhaust all my other options?
By then they will all think I am crazy!
I got sick again this morning. Stomach virus I think. It is going around A LOT! I had it last week too! I had to check in at school feeling like crap again. And I am so behind and have no clue what I am doing and we have 3 days left! I don't think I am going to make it....
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Christi,
Have you printed out Lymedad's post to family members about Lyme? He will even email family members to discuss it with them. You might try that, if you haven't already. Nothing to lose, everything to gain.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Well, I would think you would point out to your Mom the money you have spent on all these other doctors and the tests you have done? You've traveled to several places so far and are going to travel to Nashville next?
That has to have been a lot of money spent, so I don't understand why you can't go see an LLMD? It might just save money in the long run.
If you can travel to other areas of the state, and other states....why can't you go see an LLMD? I just don't get it. ??
Posts: 1366 | From Southeast | Registered: Sep 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I don't get why you can't pay for your own Igenex test.....
I know that 190.00 is a lot of money for a 15 year old,
but not a lot of money when it comes to your health.
I must admit, I get confused when you say you are saving up for a motor bike, but don't
Say anything about saving up to possibly pay for Igenex testing....
Your insurance may pay for it....However, your parents would have to file the claim with
Their insurance company after the test was completed.
Many people here have been reimbursed for Igenex testing.
I have to admit, I am still confused.
Hope you just finish out your school year...
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
I don't understand either. I have told her over and over. I YELLED IT TO HER!!! I said straight up, "THINK OF ALL THE MONEY WE WASTE GOING FOR NO REASON...THEY NEVER HELP ME....I HATE GOING...."
Something like that. But, she just says she doesn't have that much an refuses it.
All something that is bothering me....'motor bike' is actually dirt-bike....and I am not saving for one anymore. I never work anymore because I never feel like going, so I figure by the time I work and get enough money I will be like in college and have a car...so...I gave up on that.
Not GIVE UP!! Just going a different route.
I don't understand why she won't pay for it or even consider it either. You are just as confused as I am. However, she is up for talking with my doctor aboput Fibromyalgia. That's what she thinks I have.
Which I can agree. I have every symptom or whatever and my neighbor(whom I have mentioned before) has it and I am just like her.
I told her I don't need to go all the way to Nashville to talk about Fibro and ask if I have it. I was thinking about just asking my neighbor about hers. She takes meds to control hers.
That would be ok with me. As long as I can find something that helps with sleep, joint pain, and anything else I can. I don't know.
I am trying to be less stressful by forgetting about somethings. Telling myself I am ok. Telling myself to stop worrying about medical stuff and think about something else. I am trying to focus on other things and forget all about being sick.
I slept last night and I think I even fell off my bed and hit the closet but I vaguely remember it! And today I felt better. I got to laugh! And I was ok and didn't get really sick or nothing. Only like once. So, I think the relaxation and stuff worked some.
So, anyways, I don't know. I already forgot what I was originally talking about so, see ya.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
| IP: Logged |
posted
Hi Christi -- Igenex will send you the test kit free of charge. I'm wondering whether there's anything you could do in town to earn the $190 yourself to just do the Igenex tests everyone's asking you to get done.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
When is your birthday? Tell your parents you want nothing but the IGeneX test for your birthday. When a 15 year old asks for a blood test in leu of birthday presents, it will get their attention and maybe then they will believe you.
If they don't, then tell your grandparents that you want the blood test for your birthday.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
I understand that, but I am so tired of dealing with everything. At least it would be a start and maybe I could at least feel better some days, maybe. I don't know. I have pushed and nothing has come from it. I keep trying over and over again.
The only thing I get is a screaming fight with my mom about it. Which makes me feel worse and get depressed because I wish I could do so much more.
I just want some time to stay quiet and see what happens. To stop fighting about it all the time. I am trying new methods to relax and not be so stressed all the time. That only makes everything worse.
A Fibro diagnosis would be a step for me. More than anything else I have done. And maybe if I were given meds for it, it would help me not feel like crap all the time. To not be in so much pain, or to be able to sleep, or be able to have a somewhat 'normal' life. Whatever that is.
Taking a load of meds all the time isn't what I would call normal, neither would my friends, but at least I would be able to do more without feeling like I do. I have 2 more years of school left. I want to make it through. After that I want to keep going, but I won't be able to if I don't do something. I understand the test is the best option.
It would take me a long time to get the money, not even for my birthday. And I don't have grandparents....
My parents nor doctors would even take it seriously. And I couldn't do it alone. So...
I don't know.
I keep asking for your help when really I just need to help myself. I know that. I just hoped that someone would come along and have a different idea or opinion. Anything else I could do.
I just wish it would be one of those things that would pass. I know that will never happen, but still.
Fibro is better than nothing in my opinion. I am not giving up on anything, I just want something done, anything.
That's all I can handle right now. I am trying to make it better for me, I am trying, and that is all I can do right now.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Christi, as you may have noticed, parents can be really strange.
They can say "no" to something 20 times, then suddenly they have a weak moment or they begin to realize that you might actually know what you are talking about, and suddenly they reconsider saying "no".
If you have the Igenex Western Blot test kit sitting in your closet when they finally "come around", they won't have a chance to change their minds.
Tracy
P.S. By the way, many of the people talking to you here started out with the Fibro diagnosis and "treatment" (of symptoms). Just remember that.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
Yes, lymetoo, I did see it. Amazing, I know. And thanks for highlighting it!
Very much like me. Kind of shocking....
Yes, parents are strange that way...they can never make up there minds. Just got to catch them in the right mood! And believe me, my parents are NEVER in that 'RIGHT MOOD!' At least I have NEVER seen it....
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
| IP: Logged |
quote:Originally posted by Truthfinder: P.S. By the way, many of the people talking to you here started out with the Fibro diagnosis and "treatment" (of symptoms). Just remember that.
That would be ME.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
I hate to think I could have anything, but since I am obviously confident that I do and can't see a LLMD then Fibromyalgia is the only other option that I can discuss with my doctors and parents and have them actually listen.
I can agree with fibro and so can my parents. I just need the doctors opinions. It is a step and it isn't going to help in a Lyme diagnosis or anything, but I think it can help actually establish that something 'real' is wrong with me since they can't 'find' anything else.
And I think my parents are going to MAKE me go to Nashville. My mom says I HAVE to go because if 'I GET WORSE OR SOMETHING HAPPENS' (those were her words!) then all my doctors would question why I didn't go in the first place and blame it on us. So...I think she is going to force me to even though I don't think it is the best idea or even that it will help. But...if they want to waste money and time they can go for it!
But, thank God, the past couple of days (2-3) have been GOOD days! Except for some stomach problems in the morning, everything else has been fine.
Except, I think I have like low blood sugar or something. I have been getting hungry and having massive headaches when I get hungry. Not like usual. And I start feeling bad. This happened the day of my tennis try-outs and it got better when I chewed some gum and drank gatorade.
I am no doctor so....but it is just another one of my crazy, out-there ideas.
Well, I hope my good day streak won't end just yet! I am going to Florida on vaction 2 weeks today! I have a strange feeling it won't be that great. But, I can hope it will be!
Thanks! Have a Great Memorial Weekend!!!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Another thought, Christi. My LLMD was finally made aware of Lyme by the parent of a young woman who insisted that if he ran his Lyme test through his lab, he also run another through her choice of labs, which was Igenex. When he saw the results he was amazed and now he is Lyme Literate.
Perhaps you could work out some kind of deal with your parents that you will go to the duck in Nashville if they will agree to have you tested for Lyme through Igenex.
Of course you know the best way to bring it up to them and have the best chance of their listening. It may even be better to wait until after the Nashville trip, but I think it may be worth a try.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Christi, I'm not sure you realize the implications of going with the Fibro diagnosis and treatment....
1992, after years of symptoms, I was finally diagnosed with Fibro. I worked and worked with good Fibro docs to get well. To make a long story real short.....
By June 1, 1999, I was disabled and could no longer work at ANY job, even part time.
Sorry to be so blunt, but there you have it.
Hmmm.... I like Lymednva's suggestion....
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
Yea, I am still trying to work something out.
I realize the implications. It is probably not the way to go. And it may not help at all. And I amy get worse.
The key word being MAY. I hate not knowing what will happen, but I can't just sit and wait for them to believe I could have Lyme. If I were to see a doctor for Fibro and it didn't help I MAY have a better chance of convincing my parents it is Lyme.
I am just trying everything I can to get them to believe me. And to do something before I end up like some of you on here. I am NOT syaing that in a bad way. I just mean, some of you on here had to suffer for a very long time, and I hate that and it isn't right, but I don't want to end up being this way with it getting worse and worse everyday for 30 years before they relaize something is REALLY wrong.
I want them to realize it early. MAYBE if I could get diagnosed with Fibro(it wouldn't be the end to my fight...it would be a new beginning to it...) it would convince them to keep going with the idea I could have Lyme. I wouldn't just stop at that! No way! I would push even harder!
I just believe I need something to go on. Something to show them so that they can believe it. Many people with Lyme were first diagnosed with Fibro, and just maybe if I were diagnosed with it they would believe there was more of a chance that I could have it.
It is just a thought. I am trying though.
Thanks, and hope you have a GREAT Memorial Weekend!!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
| IP: Logged |
quote:Originally posted by lymednva: Perhaps you could work out some kind of deal with your parents that you will go to the duck in Nashville if they will agree to have you tested for Lyme through Igenex.
I like that!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic