Three years ago I began getting pain in my back and neck. I don't think I went to the doctor about it, so I just lived like that.
About a year later I got strep throat every month for 10 months in a row. That was unexplainted, too. So I went to an ENT (Ears, Nose, Throat) doctor and he gave me an allergy medecine which cleared it up. In fact, I haven't really even gotten strep since.
Over the past year I have been getting more and more symptoms:
stomach pain achiness soreness anorexia (very very close to starving myself) panic attacks back pain chest pain breathlessness numbness confusion constipation depression difficulty concentrating dizziness muscle twitches fatigue hallucinations headaches/migrains joint pain knee pain- makes it hard to walk muscle aches nausea motion sickness neck pain heart palpitations PMS OCD waking up in the middle of the night speech errors stiff neck jaw pain poor circulation in hands
I've been getting more and more symptoms. It's really bad. I forgot to say...when my only symptoms were the back/neck pain and strep I went to an orthopedist. He didn't find anything, but I went to physical therapy and it didn't help.
A few months ago I went to a cardiologist and she didn't find anything wrong with my heart. They just said I was dehydrated and to go to a PSYCOLOGIST! I was really upset. I literally cried for an hour.
My parents don't believe me. Nobody believes me. Except me. I feel horrible almost all the time. And to have nobody believe you when you feel this bad, is the worst feeling you could ever have.
It's really hard. I'm so young. I shouldn't have to deal with this- especially by myself. I know that I have to search for the answers that I need. But since I can't drive and my mom doesn't believe me I always have to beg her to take me.
I'm so scared that she's going to stop taking me to doctors. The other day I went to a neurologist (my idea). I told him that I really believe that I have Lyme Disease.
He laughed at me and kept telling me that I don't have it. Then he starts saying that even people who have Lyme can be on meds for months and not get any better.
So, he doesn't thing Lyme exists. When he said that I started crying. I've met so many people on the message boards who are suffering and it makes me to mad that there are people that don't even believe it.
I wanted to punch him. Hard. And I should've. All he had to say was that I have depression and severe OCD. I agree with the OCD, but he thinks that I have OCD because I wrote down the symptoms that I have. I wrote them so that when I was at the appointmet I wouldn't forget what they are. That is not abnormal.
But he is testing me for this thing for migrains. Something like that. It's just so upsetting. I absolutely, positevely KNOW that I have Lyme Disease. I know it.
But nobody believes me. I'm starting to think that I'm never going to get better.
Can someone please give me advice? I really need someone to talk to.
posted
One more thing, I have a borderline high amount of ANAs (antinuclear antibodies). It was found through a blood test.The doc wanted me to retake it, so I did this morning.
-------------------- "Life doesn't have to be perfect to be wonderful."
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Mystery, For what it's worth, I believe you. I know what it's like. I, however, am not in much of a position to help much, right now.
My best advice is to post in the "Seeking a Doctor" section of this site to find a lyme literate doctor in your area.
Put your general location in the title line and others in the area will most likely PM you contact information for docs close to you that do believe Lyme exists. This would be the best way to get a decent evaluation and proper testing.
There should be LLMDs you can get to fairly easily if you're in NJ.
Good luck, I hope you get help soon.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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It's one of the hardest challenges to face -- knowing there is something legitimately wrong with your body (and your mind, thanks to Lyme) yet no one believes you or they try to make you think it's all psychological.
My best advice is to "get thee to an LLMD".
I understand you have to have your mom drive you. Do you mind me asking how old you are? If you are over 18 - do you think you could get a friend to drive you instead?
Have you tried printing off some basic info about Lyme to present to your parents -- or at least to your mother?
This is a hard disease to face WITH support from family and friends -- facing it WITHOUT that support will be so much more difficult and I'd hate to see you have to endure that as well.
If I were you I would really try to get my mom on my side. Most moms only want the best for their children - no matter how old they are. So I say give your mom a chance -- give her the info she needs so that she can understand.
Sometimes parents are afraid to believe there is anything legitimately wrong with their children. It's a scary thought -- to think your *baby* is ill.
Give her some time - hopefully she'll come around.
Im the meantime - study up on the disease, and find a doc that will know how to treat you appropriately -- and if you do have Lyme - that will naturally be an LLMD (Lyme Literate Medial Doctor).
I'll keep positive thoughts & prayers going your way.
Hugs &
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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posted
Thanks for believing me, both of you. It makes me feel better to have people that believe that what I'm feeling is real.
I could tell you how old I am, but I'd rather tell you in a PM.
I've given my mom information about Lyme Disease but I don't even think she bothers to read it. I watch tons of medical shows and they think that I'm just trying to 'find a disease'.
I've found an LLMD in my state but she's 2 hours away. Honestly, I think it would be a miracle if my mom took me. . But I hope that she does try to be caring towards me. If my child was saying that they didn't feel well every single day I wouldn't even hesitate to take them to the doctor until the answers are found. But yeah, I guess it could be that they don't believe that I have something bad wrong with me.
-------------------- "Life doesn't have to be perfect to be wonderful."
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm still waiting to hear where in NJ your located, so we can let you know if there is a LLMD closer than 2 hours away.
If you feel so strongly that you have Lyme, and have apparently been doing your homework, why are you still running around to other doctors.
In your last post it was suggested that you post in "seeking doctors" with your info for a LLMD in your area.
People were trying to help you.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I cringe at the times I made my daughter get out of bed and off to school when she could barely function. Who woulda thought someone could get Lyme in the desert!?
So...it may take your mom a while. Do what they say, print some information out, and go to seek a doctor.
Sorry you are sick.
Posts: 2903 | From AZ | Registered: Feb 2006
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Well, before I started researching Lyme Disease I made apponitments for the doctors who treats symptoms like mine, like I went to the cardiologist for the chest pain ect. But I made the latest appointment a while ago and the appointment was just a few days ago.
-------------------- "Life doesn't have to be perfect to be wonderful."
quote:Originally posted by kelmo: I cringe at the times I made my daughter get out of bed and off to school when she could barely function. Who woulda thought someone could get Lyme in the desert!?
So...it may take your mom a while. Do what they say, print some information out, and go to seek a doctor.
Sorry you are sick.
Oh, I'm sorry you feel badly about that. Please don't blame yourself. It wasn't your fault. You didn't know.
Thank you
-------------------- "Life doesn't have to be perfect to be wonderful."
posted
Oh my golly Mysterygirl, it almost weirds me out I can sympathize so much! It's almost like I'm listening to myself from a year ago talking to me....anyways, what I'm trying to say is that I believe you. I have to run right now, and I'm really sorry that I do because I want to talk with you more about this...it sounds like we could really relate to each other I will send you a pm as soon as I can and as soon as I remember In the meantime, hang in there and know that we're all here for you! You're awesome! Posts: 89 | From UT | Registered: Jun 2006
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
i believe you, too!
i hope your mom will come around in time. she's just not getting it. a lot a lot a lot of people don't GET IT!
good luck getting to a LLMD.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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quote:Originally posted by jggrl: Oh my golly Mysterygirl, it almost weirds me out I can sympathize so much! It's almost like I'm listening to myself from a year ago talking to me....anyways, what I'm trying to say is that I believe you. I have to run right now, and I'm really sorry that I do because I want to talk with you more about this...it sounds like we could really relate to each other I will send you a pm as soon as I can and as soon as I remember In the meantime, hang in there and know that we're all here for you! You're awesome!
This is great! I'm so happy to know someone who is going through similar things as me...I mean I'm not happy you have Lyme. You know what I mean. lol.
Alrighty. I'll look foward to talking to you on PMs.
-------------------- "Life doesn't have to be perfect to be wonderful."
quote:Originally posted by hopeful123: i believe you, too!
i hope your mom will come around in time. she's just not getting it. a lot a lot a lot of people don't GET IT!
good luck getting to a LLMD.
Yes. It's so sad. Lyme Disease is very serious and causes so much suffering. It breaks my heart to know that there are jerks who don't even try to understand it. It is so imporant to be aware of the disease.
Thanks! I gave my mom Dr. E's phone number. I'm crossing my fingers that she'll actually call. If she doesn't call by tonight then I'm going to call myself. I'm going to tell her that tonight is her deadline.
-------------------- "Life doesn't have to be perfect to be wonderful."
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
crossing my fingers!!!!!
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Mystery girl, Your age is not such a big secret. people here can relate and advise better knowing your aproximate age.
MY advice to help your mother 'help YOU' figure out what is wrong IS. Print off the 'best' condensed(less is more) (when trying to convince the unconvinable) version YOU can find of lyme symptoms. Dr B used to have a good list.
Take that list and highlight in your school markers(dont all kids have those??). Highlight the symptoms you HAVE in color coded fashion, like blue for sometimes, yellow for often, and red/pink/you decide, for the most severe and forever symptoms.
Might make three copies of that, one for mother, one for father, one for LLMD(dont see another duck!!!) AND keep one for yourself,,,okay I cant count!!!
All the colors will draw attention to form, they are more likely to read!!! Getting them interested and seed planted is ALL you want to accomplish anyway.!!! After it sprouts and grows she can nurture the seedling with research on THIS disease. Invite her to read here and post a few questions!!!
Dont let her get into those stupid IDSA guidelines and rehtoric garbage they spew forth!!!
Now even better question, do you remember being bit??? Did you have the funny looking bullseye rash?? One now?? IF you have one,,,take a picture with coin off to side to give size comparison!!! Remember,,, alot of people DONT remember the bite, didnt have the rash,,, BUT IF 'YOU' did have rash(bullseye with a clear spot in middle),,,that is diffinitive in itself!!!
Get thee hence, forthwith,,, to the LLMD and get tested, lots of negative tests but a positive will be most certainly explain alot of problems you experience.
You can always post here for more support and understanding if your parents arent able to provide. I live in fear one of my dear children or grandchildren finds the lucky tick and gets what I have!!! Hope my experience doesnt allow for what stupid things "I" did way back then to get myself in such a fix, to happen again in the family!!!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
oh sweetie. i'm so sorry. i believe you too.
i went through the exact same thing, and had to fight the worst part of my disease with absolutely no support from my family whatsoever. in fact, at one point they even committed me to a psych ward, they were so convinced i was crazy.
i send you all my love and support. do you have any friends/family friends who could help you out? i'm not sure how old you are.. but someone old enough to drive you to appointments, etc? my friends were the ones who drove me/flew with me to LLMD appointments.. i was WAY too sick to go by myself.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
ps. my mom believes me now. it took her a long time, but now she believes me, one hundred percent. and she's said she may never be able to forgive herself for not supporting me when i was literally near death. but - she came around, and our relationship is stronger for it.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
PMing closer LLMDs
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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I'm just going to say that I am around 13 years old. Like I said, I'm very young.
It's hard having to rely on my mom to take me to the doctors. If I could drive myself then I would most likely be getting treated by now. Grr. I hate relying on people. I just can't anymore.
I feel like this whole thing stole my childhood away from me. You know? I don't get to run around, hang out with my friends...be a normal teenager. My day consists of going to school, researching Lyme Disease on the internet and lying in bed.
-------------------- "Life doesn't have to be perfect to be wonderful."
posted
Miss Victoria, For a 13 year old you are quite mature and doing a great job advocating for yourself. I'm certainly impressed.
As a thirteen year old, you should be dependent on adults, to care for you, help you with your health issues, and much more. It can be frustrating if those adults take time to come around.
I am grateful that your mother is now supportive. It may have been difficult for her to see that her child figured out something that many adults who went to medical school couldn't see.
Posts: 628 | From the south | Registered: Dec 2005
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I'm also impressed with your maturity and being able to advocate for yourself. It will turn into one of your best assets and coping skills.
My daughter was diagnosed at 17 but I now know she had lyme from at least around 13. She did struggle through middle school and high school because she didn't have treatment but the good news is that she graduated and left for college this August.
I think kids heal faster than us fifty year olds. Get to a LLMD and get treatment. My daughter did and she's doing okay. She still has to manage her meds and her health which is difficult for her because she's a social animal! She crashes and then learns from it and so will you. You will get better and be out there soon.
BTW, her LLMD was the one who encouraged her to go away to school instead of staying at home to attend college.
Posts: 460 | From Illinois | Registered: Aug 2005
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quote:Originally posted by serendipity: Miss Victoria, For a 13 year old you are quite mature and doing a great job advocating for yourself. I'm certainly impressed.
As a thirteen year old, you should be dependent on adults, to care for you, help you with your health issues, and much more. It can be frustrating if those adults take time to come around.
I am grateful that your mother is now supportive. It may have been difficult for her to see that her child figured out something that many adults who went to medical school couldn't see.
Thank you
Yeah, it definately is frustrating. It's a pretty tough spot to be in.
Yeah, I am too. But I do hope that she also takes time to do some research of her own. I'm sure it would benefit us both.
-------------------- "Life doesn't have to be perfect to be wonderful."
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