I'm Victoria and I'm 13 years old. I have been sick for as long as I can remember (which is over 5 years). I have been to many doctors who have never given me any kind of diagnosis other than being Hypocondriac, Depressed, having OCD ect.
Since the doctors don't know what's wrong with me, they don't believe me anymore. It is emotionally exhausting and paralyzing. My parents don't believe me. The doctors don't believe me. My own 'friends' don't even believe me.
I have done my own research- a lot of it- and am 100% convinced that I have Chronic Lyme Disease. Since I am not believed, my parents won't take me to a LLMD.
A lot of people are in my situation. And I want all of you parents who don't believe their children to know how damaging your ignorant behavior really is.
If your child tells you that they don't feel well, and the symptoms persist without getting better with over-the-counter pills, rest, ect. it is possible that there may be something else going on that you can't physically see.
People with Lyme Disease often don't look sick. They can look like the average person, but feel terrible.
If your child is feeling sick from an illness, they often do tell you what is wrong. Listen to them. Believe them. Take action.
Over 60% of people who have Lyme Disease never get a rash. Ever. And a person does not need to have joint and or muscle pain in order to have L.D.
The 2 bloodtests that doctors run for Lyme Disease are called the Western Blot test and the ELISA (titer). Both are not 100% accurate, and are well known for providing false positive and negative results. They are useless, in my opinion.
The only real way to know if your child has Lyme Disease is to go to a LLMD (Lyme Literate Medical Doctor). They can make a diagnosis without a positive test result.
Believe it or not, infectious disease specialists are some of the least knowledgable people about L.D. so don't even bother with them.
I stress that you believe your children. We are not crazy. We are sick, isn't that enough? We don't need your grief. Thankyouverymuch.
Lyme Disease sufferers often devolop mental/emotional problems such as depression or OCD. These are RESULTS of having Lyme Disease, not the cause of it.
I may be 13, but I know what I'm talking about. If you have any questions, I strongly encourage you to ask me.
From the child's point of view, I can offer you advice as to how to help your children in ways that you may not have tried yet.
posted
I can't tell you how frustrating it is to speak to other parents who shrug off the possibility that their child(ren) could have lyme.
Just today I was at a sporting event and was talking to one of the Mothers. She told me her son had been treated twice for Lyme and acted like it was no big deal. I gently tried to explain how serious lyme is but was thinking " Are you just stupid?".
Posts: 547 | From Maryland | Registered: Mar 2005
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posted
Thank you, just don! That is a very nice thing to say!
I know what you mean! I try to explain to some adults about how Lyme Disease can become chronic and all that, but they don't really even pay attention. They look like they are thinking, "Are you stupid? I'm an adult. Wouldn't I know?" It is soooooooo frustrating. If only people would listen...
-------------------- "Life doesn't have to be perfect to be wonderful."
posted
It works both ways. I have a son who I think has lyme disease but he totally won't listen to a word I say about it. I have had lyme disease for 43 years and I don't want to see him live like I have. I wish he would at least get tested for it. I see him getting more and more tired every day and he is olny 25 years old.
posted
I'm sorry that your son is sick and won't get help. Maybe if you tell him that you'll 'leave him alone' about the Lyme Disease if the LLMD says that he doesn't seem to have it, he will just do it.
I can't imagine how that must feel for you. But you know... if he won't listen to you, it's his problem. But I don't understand why he doesn't want to get better.
Is there someone that you could talk to who he is very close with who could try to get through to him, like a girlfriend or friend?
Good luck! Thank you for trying to help your son. He is very lucky to have a mom who cares about him so much.
-------------------- "Life doesn't have to be perfect to be wonderful."
livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
this thread is refreshing and frustrating at the same time.. MG44 you appear to be a very intelligent teenager..
LNDunkirk,,,all I can say is "Ignorance is Bliss",,,, some people you might as well throw a brick at their heads cause they just won't get it.. "lights on but no one is home!!!" or my other favorite one "the mind is like an umbrella it works best when opened.."
Sick... I have a daughter 26 who thinks this way too,,, just because everyone in the family was found to have it .. she is different.. she can't have it... she is far better than us..but she has multiple body function ailments.. with all sorts of tags... so sad but she can not have LD...
I'm just glad that both of my boys are aware how much devistation it has cuased our family to learn exactly what this disease can do.. KILL
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
I like that. The mind is like an umbrella and works best when opened. Now if I can remember it............:-)
Posts: 547 | From Maryland | Registered: Mar 2005
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Thank you, sick. Yes, I've been tested a few times over the years and it always has come back negetive (that I know of). I have had a borderline high amount of ANAs and got a borderline high result of an ASOT bloodtest. I also have low blood pressure and I think that I have a low body temprature. That really is the only evidence the doctors have that 'something isn't right'.
It would be way easier to convince doctors that I'm sick if I looked pale or thin or whatever, although I don'tr want to be. You know what I mean? It's hard to explain.
I hope that someday soon you can change your username from 'sick' to 'better'.
-------------------- "Life doesn't have to be perfect to be wonderful."
posted
Well thank you Mystery Girl44, that is the sweetest think anyone has said to me in a long time.
You know I am better. Just having the wonderful caring friends here does more for me then you can imagine.
I don't know if anyone can understand what I went thru for all those years. No one to talk to about how you felt. No doctor to beleive you. And the fatigue that never ended. You know at times I wondered if it was in my head but I knew it wasn't.
I still do not even talk to anyone around here about it.They just wouldn't understand.
livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Sick,
it is sad but I too always come back here. I am hoping someday that I will not have to, but that I come back as I choose to help others instead of griping and complaining..
but when I do; I hope that we all will be here because we have a common link = a CURE! Keep up the hope that someday there will be a cure..
I hope for one thing, that when I die I will no longer feel this pain..
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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quote:Originally posted by MysteryGirl44: I have had a borderline high amount of ANAs and got a borderline high result of an ASOT bloodtest. I also have low blood pressure and I think that I have a low body temprature. That really is the only evidence the doctors have that 'something isn't right'.
It would be way easier to convince doctors that I'm sick if I looked pale or thin or whatever, although I don'tr want to be. You know what I mean? It's hard to explain.
I hope that someday soon you can change your username from 'sick' to 'better'.
Highlighting this for Wilsongal...Christi.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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But, I was interested as soon as I started reading! I read everything and got particularly interested at that point in the post.
What exactly is a borderline ASO?
All I know is that 'normal' is between 0-200. When I first had mine done over 2 years ago it was 1633.3 which is just a little bit over!
I had it checked a few weeks ago and several months ago and it has stayed in the 800's and fluctuated.
They keep telling me it is nothing to worry about. But, they can't 'find' anything else except they say I have arthralgia(joint arthritis without inflammation). Some made up something because they can't think of nothing else, if you ask me!
But, anyways, someone closer to my age who has the same idea I do! No one seems to listen. I mean, except for you guys here!(Thanks!) I just mean others.(doctors, parents, friends, etc.)
But, I would love to stay and talk, but I am working on the whole sleep thing. Which seems to be getting a little better since I started the whole stress-less, relax, focus on other stuff, tell myself I am ok thing!
That was confusing. Sorry. But, anyways, tomorrow is the last day of school for me! And next Tues. just for 2 exams. Then, I can sleep all summer! Just kidding. But that does sound like a GREAT idea.
Anyone up for a SLEEP-IN!
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
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Mine isn't as 'open' as yours but you have ALL of my EXACT thoughts written down. It's amazing really. And you want to be a doctor!! I am speechless. And btw, I love your site. The awareness part most. I have been looking for that exact stuff to put on mine!
ummm....I don't know what to say. But, you are so incredibly similar to me that it's bizarre. I am actually kind of scared!
Ummmm....I will have to come back tomorrow. Like I said before...SLEEP calls my name....
And thank you.
-------------------- 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
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posted
Oh, I did. Of course, that would be the first thing I do after reading something like this. I was going to put that I PMed her in the last post because I knew someone would mention it. I forgot! Sorry. But, thanks for reminding me. And I did PM her, no response yet.
-------------------- 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
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I'm glad to know that someone knows what I'm going through. It really makes me feel like I really am not crazy. I hope that me and you find a lot of support and strength through eachother.
I'm not sure what a borderline high ASO is. But maybe the doctor told me that it was high. I don't remember, unfortunately. I never got all of the numbers back or ever saw the paper with the results or whatever.
Yaay! Last day of school! I hope you have a fun day!
I'm still in school until June 16th. . I can't wait until it's over. I'm so stressed because my grades have been pretty awful since I've been getting more sick. I've already failed some of my classes once already, and if I fail the same ones again, then I'll have to go to summer school... and I really don't want that!!
I just replied to the PM that you sent me and added you to my Myspace page.
Have a great day! ~Victoria
-------------------- "Life doesn't have to be perfect to be wonderful."
posted
Thanks! I actually want to talk to my school about Lyme Disease and believing in yourself, etc. I also want to go on the Mystery Diagnosis show to share my story, too.
You're actually already one of my Myspace friends. How cool! I'm Lyme Disease Awareness with the green avatar that says, "Support".
-------------------- "Life doesn't have to be perfect to be wonderful."
posted
Cool. Wow...June 16. That stinks. I have to go Tuesday for 2 classes just take the exam then I am going to my 3rd period because it is my favorite teacher and I love to hang out in her class. Then, I am gone! I will then become a Junior!! Yay!
But, I hope you can do better in school. My grades started falling too when I started feeling worse. But, I worked my butt off to get them back up before report cards!
Well, it is great talking to you! Have a great 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
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posted
I agree with the above poster that you are wise beyond your years...I wish you the utmost support in your struggle. I have a daughter just a few years older than you who has been sick since she was seven. It took some convincing to finally get her PMD to do a Western Blot, which came out positive...I cannot imagine what would have happened to her had she not had me to advocate for her. You are in my thoughts and prayers.
Posts: 217 | From New Jersey | Registered: Apr 2007
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I can feel your pain honey. Although I am 28 now, I have had this for 20 years. Been to many, many docs... I really started going downhill fast in my 20's.... when you're 22 telling docs you are in horrible pain, fatigue, and on and on.... you're a hypochondriac, or drug seeker... my biggest problem with people any more is that they don't have an open mind.
Thankfully I found a great MD....but still even as nice as he is, he doesn't believe in the lyme thing, so I am off to a LLMD at the end of the month....finally some answers.
best of luck to you.... j
Posts: 151 | From ohio | Registered: May 2007
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posted
I'm really sorry to hear that. I wish that those who don't believe us could know what we are going through personally, although I wouldn't wish this illness on anyone.
I hope that you find relief from the appointment! I'm going to a LLMD, too! After another talk with my mom she agreed! YAAY!
-------------------- "Life doesn't have to be perfect to be wonderful."
posted
i have always said, I would never wish this on my worst enemy, BUT I do wish EVERYONE would feel how chronic lyme pts feel for ONE MONTH.... then they might just understand a bit
Posts: 151 | From ohio | Registered: May 2007
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. I can't wait until it's over. I'm so stressed because my grades have been pretty awful since I've been getting more sick. I've already failed some of my classes once already, and if I fail the same ones again, then I'll have to go to summer school... and I really don't want that!!
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