posted
Thanks. I will look into that. I have not really thought of that because I don't realize when I am around stuff like that.
That's ok. I understood your concern for the board and the people on here. I am sorry that some people may think that. Also, I apologize for the last post.
I have mood changes. I get angry really easily. I don't mean to or nothing and I am sorry.
I can assure everyone that I am most defiantly not a doctor. If I were I would be helping everyone on here. I hate that I can't help and that everyone has such a problem with the doctor's not getting it right the first time.
I do want to be a doctor some day. I am different though. I realize Lyme is real and real people suffer everyday from it. It breaks my heart that so many people can be in so much pain and the 'so called doctors' won't do anything.
Also, that America or any counrty won't do anything about it. As I have mentioned many times, I want to be a doctor, but I want to be different from the rest.
I have passion, and curiosity, and determination. I want help make everyone better. I want to change the field in that people should not be misdiagnosed. Doctors should care more about the patients they see than there stinkin pay checks.
I would still be a doctor even if I didn't get paid. I would do it for free. For the sake of so many sick people out there. It isn't right.
What is also not right is America's government not doing anything about it. You know this year in my American History class we studied the Declaration and the Constituion.
In the Constitution is says stuff about who can be elected and what not. But, it also says that if the citizens feel that the government is not doing its job it can be overtaken and a new one can be established.
Personally, I don't feel the government is doing its job. Doctors should not get away with what they do. They get so much yet so many people go misdiagnosed.
I don't think it is right. It really means a lot to me that I become a doctor. For me, my family, and for everyone else. I want to help people.
I want to listen to them, and make them better. I want to stay with people for more than 5 minutes at a time. I want them to know that they are not crazy and that something is really wrong.
And I will figure it out. I want them to trust me to fix them and put there lives in my hands. I don't want people to suffer like so many do.
This day in time no one should be misdiagnosed, disrespected because the doctors don't want to mess with them, and people should not die or suffer from something that is treatable.
I know I have big dreams and I want so much out of life, but I don't want it for me, I want it for everyone whom I have the ability to help. I know it is huge, but I am willing to work really hard and to not give up for the sake of the people.
It has been my dream since the day I was born. And I do plan to fulfill it. I honestly can not see myself doing anything else. I know it will be hard, but I will do it. I will fulfill my dream, no matter what. Nothing is going to get in my way.
I have a strong opinion about medicine and doctors, and the whole medical field. I know I may not seem like a regular 15 year old 'teenager'. But, I really am. I just see the world differently than just clothes, shopping, friends, parties, or whatever else.
Honestly I don't care about that stuff. Although, I do have a myspace! But, I seldom get on it. I would rather be on here or something else. At least doing something productive rather than rotting my brain with video games and myspace or whatever.
And people may not trust me. But, I want everyone to know that they can trust me.
I am like everyone else here. I am suffering for no reason. There is something wrong and I just want to know what that something is. I am glad to have learned so much from this site and the people on it. I am going to take it and use it when I become a doctor.
I am truly only 15 and it saddens me that people can't trust that. I wouldn't lie like that. I am not that kind of person. I know it could sometimes be hard to trust people. I see that part. And I get what you are saying.
I feel bad that people on places like this have to worry about who they are talking to. This is a good place and people like that should not be on here. Unfortunatly, bad people do exist in this world. So, it is hard to trust everyone.
I am, however, very thankful that so many people have been willing to help me. I only wish my doctors could be like that.
I just feel worse now than ever. I have been taking everyone's advice and I have tried to talk to my parents.
Unfortunatly, everytime I do they end up not listening. They just walk away or ignore me. They don't think I am serious.
No offence to anyone on here, but they also believe I know way to much and it can't possibly be real.
I tried to show my mom the numbness in my legs and how I can't walk when it happens but she just walked away. I told her about me hurting my shoulder yesterday and she didn't pay any attention.
I finally figured out why they know nothing about me. I used to complain about everything. They would just get mad that I complained so much. That's why I don't complain. That is why they don't know about anything I am going threw.
They didn't listen then and they don't now.
Well, anyways, I am sorry if I went off the wrong way. Please don't take anything I said personally or nothing. I just want people to know my opinions and how I feel.
I want people to better understand me. I feel like I can fall back on people here and talk to everyone like I know them more than I can my own parents.
To me, it is very sad that the only person who realized something was wrong and that I didn't feel good was the recetionist at my Physical Therapy place!
Well, thanks for everything, and please don't think that I am angry with anyone on here. I love this place and what it is doing to help people. And I really appreciate the people who have helped me.
It really does mean a lot. And I hope people can know me for me. And not think I am something I am not. I am very sorry though. And thanks so much for everything!
-------------------- 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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quote:Originally posted by lymemomtooo: due to your level of maturity and may suspect you are an adult or even a Dr from the other camp trying to play as a 15 year old and they might be afraid to give you too much info, lmt
Thanks for the compliment. I am mature for my age because I see the world differently than most people. And I can assure you, I am not a doctor!
What is 'the other camp'?
I was just wondering because I didn't understand what that meant.
Thanks!
-------------------- 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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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Christi, the other camp refers to the Drs that do not diagnose and treat or do so with 1 pill to a possible 3 week supply or that say you need to go see a psychiatrist. Especially those that are now turning against the Drs that are treating and saving lives.
There should be a post of this in the Newbies links. Also check out some of the info on trolls so you can better understand this and not take it so personally.
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I'm the person who picked Christi up on the wrong diagnosis forum!
She had posted about a few symptoms and with me always being on high alert for Lyme, referred her to this site and canlyme.com (she's a member over there as well).
If she's a troll, she certainly went out of her way to get on this forum.
Btw, I have to stay off the wrong diagnosis forum now because I'd guess 80% of the posters with mystery symptoms that no doctor can figure out, have Lyme. I could sit and respond all day long! The number of people with Lyme symptoms is frightening.
I hope this puts some people at ease with Christi.
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
nancy, I am not accusing her of being a troll, etc . I have only addressed any of that because she initially wondered why she was not getting replys..I have tried to explain it to her and it may have been just that initially people were too busy to answer.
This is what I attempted to explain, nothing else and no accusations
" posted 01 March, 2007 10:41 PM -------------------------------------------------------------------------------- Ummm....well, this isn't what I expected so far. I have heard that so many people would respond to my story, but that really hasn't happened yet. " --------------------------------------------------------------------------------the above was from Christi.
I am trying to educate, not accuse. But it has all been taken otherwise. Good luck lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I'm so sorry Lymemom! I certainly didn't mean to make it sound like you were accusing her of being a troll!
I just thought I'd say a couple of words on Christi's behalf since I'm the one who directed her to this forum.
If I hadn't of picked her up on another forum I would certainly be cautious about her because she is very articulate for a 15 year old. And I can very well see people having reservations about her.
I'm sorry if I wasn't clear in my message. I was only trying to reasssure people with my experience with Christi so they wouldn't be as suspicious.
It's hard being the newbie as there is so much more to learn besides the disease itself. Thanks for taking the time to explain some things to Christi.
Again, I'm sorry Lymemom.
Nancy (another Lyme mom!)
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
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I am sorry if I started a conflict. I honestly did not mean to. I hope we can just forget this and continue on trying to help one another.
Thanks nancy for speaking on my behalf and thanks for directing me to this site. I love it here and everyone has been very helpful.
I don't think anyone is accusing me of nothing and I did take it offensively. It is ok and I understand the curiosity. It has to be hard trusting people on the internet these days so I understand where that is coming from.
But, it is ok and I am very sorry to have made the comment I did. I know no one is deliberalty not helping me because I know everyone on here is just like me and very helpful in any way they can be.
So, it is ok and I understand. Lets just move on from here and continue what we came here for. And for future reference, I am really 15, nothing more than that!
Well, thank so much for the help. And we should not get stirred up by this. Thanks so much and you guys have become a second family for me! It really means a lot to me!
Thanks!
-------------------- 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
Well, everyone is going to love this. I went back to the orthopedic doctor today. My dad came with me this time and I knew he would say more than my mom would. We discussed on the way about my joint pain.
When we got there we had to wait for forever. I bet him that he wouldn't stay for 5 minutes. Turns out I was right! He came in and did everything just like last time. Like he expected something to change.
He said he wants and MRI and I don't have to go to therapy anymore.
My dad tried asking him questions about my joint pain and he said 'what did the other doctor say?'
We said, well he couldn't figure it out. So, he went on about how if the doctor did the tests then it must not be anything to worry about. He was also heading for the door and my dad had to stop him to ask more questions.
He ended up in the hallway trying to walk away with my dad still trying to ask questions.
He also said that I might have to have exploratory surgery on the inside of my knee, but probably not. (I am assuming he meant if he couldn't find nothing else to do!)
This all coming from the same guy who didn't think my foot was to worry about and he did the surgery a year later! Mainly because I was only 13! I was his youngest patient for what I had! So it was rare!
Which means it could happen again! Apparently, I am not normal so...might as well. I was very angry though. I thought I was going to cry. I told my dad and everyone he would NOT help and he didn't.
I told my mom and she was like ' well, did you ask him about 'that disease'(referring to lyme) and I said no because he was out in the hall before anyone could ask him anything.
I told her that you have to go to a specialist that believes in lyme and that there are 2 in AL but they are down south which is a long drive for us.
I wish there was some way I could just call and talk to them. I would hate to drive that far and walk out with nothing again. But, honestly, I feel that is where I need to go. I think a lyme doctor would best suit me and get me rolling somewhere for a change.
I am so angry though. I feel boxed in, silenced, and saddened. I just can't believe it has taked this long and they still do NOT care.
It makes me want to smack the whole medical community. Well, I have an MRI Friday morning. It won't show nothing, but I will keep you guys informed.
I just wish for once someone would listen to me. I am very smart if they would just listen. I know what I am talking about. I think it has something to do with my age and the whole teenager thing. Adults feel they don't have to listen because they know more.
Because us teenagers spend all our time on the computer with myspace, video games, cell phones, out at the mall, hanging out, or whatever.
I am 180 the other way. I hate those things. I would much rather be in my room alone reading medical and college stuff on the net. I know, sounds wierd for a 15 year old. I get that a lot, but it is what I like and what I do.
It has been my dream since I was born. I just hope they can figure it out soon because I will be graduating in 2 years and about 3 months. Then, I am going away to college and then off to med school!! I just hope this doesn't get so bad I can't do that.
I know what things can do to people over time. And I don't want it to keep me from doing what I love most.
Well, I guess I should go. Today is my little brothers birthday and the party is about to start. I hate parties, but it is for him so...
I will keep everyone informed. And thanks so much for everything. I am sorry if I bore you with my long drueling story of my life, but...
Well, thanks so much. It means more to me than anything. Well, almost anything!
THANKS!!
-------------------- 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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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Christi, I am not a dr but if I were in your shoes, I would consider some of the supplements or herbs that might help. Do a search up top in the archives.
Also try to get some good multi vitamins and eat as healthy as possible. use water and lemon to do some detoxing.
If you can get to a good health food store, sometimes they can offer some ideas.
You really need the full support of your parents to go to the llmd unless the Dr will cut you a great break. Many are very good but expensive and often insurance is not accepted.
Posts: 2360 | From SE PA | Registered: Mar 2004
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I do actually have a mulit-vitamin that I take and I have been eating healthier here lately and I have given up bad stuff like coke and most candy!
I have been drinking juices and powerade and gatorade and that sort of stuff. I absolutly HATE water!! I do know what it is, but I won't drink it. So...
I have never liked water and I hate to drink it. I don't know why I just hate it for some reason. But, I have been trying to get away from acidic drinks and such. Stuff with a lot of sugar and caffine and that kind of stuff.
I have been leaning toward healthier stuff with vitamins and minerals and everything.
I do know that llmd's are expensive, but I feel right now it is the best way to go. I think if I have a few really good reasons to lean that way it would be worth a shot.
I have went to every other doctor in this area and had every test. Well, not EVERY test obviously. And, no one can figure it out. My parents have spent so much money and time already, I just want to figure it out and make it better.
I will not say that everything has been bad. I like meeting new people. And I love learning all the new stuff I have learned. I think I could learn better hands on and talking with patients and sufferers like the people on here than I could in a classroom.
I feel you really can't understand something until it happens to you. So, I feel the experience has not all been bad. I have learned a lot, experienced a lot, and met a lot of wonderful people.
Everyone has been more helpful than I ever expected and I am glad I was invited to this site. I thought I would be doing everything myself, but it turns out there are people out there willing to help me help myself!
Thanks so much! It means so much to me that you guys are here for me and are ready to help!
Thanks!
-------------------- 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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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hey Christi, there are some more replies for you on the "hair loss" conversation. Hang in there girl!
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Nancy, thanks for giving some background on Chriti's story.
Boomerang, perhaps you did not take notice that the moderators have asked us to report any suspicious posters to them and not make unsubstantiated accusations ourselves within the forum. This works better for everyone.
Christi, would Atlanta, GA be closer to you than the possible LLMDs in southern AL? There is a possible alternative for you there.
Please take time to read and get a grasp of the Camp A and Camp B problems with Lyme Disease. There are two distinct philosophies regarding Lyme in the medical community, and you will understand better why your doctors are not listening to you.
Is there any way your dad might be willing to order an Igenex kit for you (kit is free) so that perhaps ONE of the doctors you have seen might consent to drawing your blood and have you tested for Lyme?
This is the only thing I can think of that you could do right from where you are. Although there is a chance the test could be negative, if it were positive, I think you would have more credibility with your docs, your parents, etc. I think the test - 2 Western Blots - still run about $200.00, but someone else can correct that if it is wrong.
Just trying to put out some suggestions here.
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
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I go the Fibromyalgia and Fatigue Center in Marietta, GA (just north of Atlanta). I started going there 2 years ago after 15 years of doctors not knowing what was wrong with me.
They will thoroughly test your blood (took 23 vials on my first visit) and after those results are in, they check for hypercoagulation - thickening of blood which lyme/viruses can cause over time), then they will check for lyme using Igenex labs and the Western Blot.
They will also check for active viruses which many of us have because of lyme.
They are very thorough and I've seen quite a few sick teens sitting in there while getting my viral IV. They too are sick with lyme disease.
Its worth the trip. I met a woman in there who flew in all the way from the Cayman Islands so it is common for people to travel to these centers.
You can do a search on Fibromyalgia and Fatigue Centers and find the one closest to you (which is probably the one near Atlanta).
All of us have felt the sting of doctors not understanding or believing that we are really sick when we know something is desperately wrong.
posted
Hi Christi: My name is Paula and my 23 year old daughter has Lyme's Disease, we live in Phenix City, AL. I just briefly read over your postings but my daughter had similar symptoms for years, was diagnosed with Chronic Fatigue, Fibromyalgia, Mono, psychosis, (even a total psychotic breakdown) etc., etc. We finally found a LLMD in Mobile, AL. I have also taken a young girl from Columbus, GA there for evaluation and treatment when Emory refused to treat her because she didn't have enough positive bands on her test.
Just to let you know, my daughter did receive treatment for almost 2 years (whens he was 18) and now she is a vibrant, full-time working single Mom. We have our lives back. So many times we prayed for her just to have enough strength to walk to the bathroom or eat a meal, now she's gone to 2 years of college, works for the Sherriff's Dept and is raising her 6 month old girl.
Since I'm new to postings, etc., please let me know how I can help. I've raised money for transportation and doctor's fees and would love to see you get evaluated ASAP. Thanks, Paula
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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posted
Hi again Christi, I am assuming you are a sincere, intelligent, articulate 15 year old, i wanted to say a few more things. Obviously, you have been exposed to conditions for a tick bite, and it seems that you have many of the physical findings and symptoms that go along with Lyme, however you have not yet developed neurological symptoms of Lyme (these would prevent you from being able to express yourself so well).
I feel it is very necessary for you to be evaluated by a LLMD in order to prevent the progression of possible Neurological Lyme Disease symptoms. My daughter and I were exposed to Lyme Disease in 1993 however she did not develop symptoms for approximately 10 years (after multiple tick bites). After reading an article in Good Housekeeping approximatetely 4 years ago, I aggressively pursued a diagnosis and treatment for her. (Interesting thing is that I have worked for a family physician for over 20 years, however he did not believe me). She and I had both developed neurological symptoms including memory loss, attention deficit, depression, anxiety, panic attacks, etc. At one point I was told that my daughter would never be normal again (after the psychotic breakdown). NEVER say NEVER to a Mom.....I eventually found a local MD who ordered a PCR lab test and we were told it was negative, however found out later that they had ordered a CRP (a heart enzyme test). Of course it was negative. She didn't have heart disease.
Being informed and reading as much as possible about Lyme is great, however you and your parents together should actively seek a definitive diagnosis and treatment if necessary as soon as possible. I would be willing to help set you up an appointment with a LLMD, try to get donations for the cost of the visit and try to arrange transportation for you and, if necessary, even go with you.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
What grace! Christi... you must have been thinking the positive thoughts that Ruth suggested on another thread.
"NEVER say NEVER to a mom..." I so agree! NEVER!!
My daughter was also on the verge of a psychotic episode due to LD. She is fourteen and stable emotionally now but we are still working to get the infection down more. LD poses many different threats to our health! Definitely not something to ignore.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Hello, as you could imagine, I honestly thought about not coming back here after I read that post about me being a 'bad reporter or insurance person' or whatever. That was sorry. That was one of the most terrible things I have ever heard.
I can't believe someone would even have the nerve to say that. I only wish I could meet whoever that was in person to prove myself. If you don't believe me, I have a myspace if you what to like check it out or whatever.
I will send you my picture, birth certificate, and my permit if you need that too. BTW, my myspace is www.myspace.com/wilson_gal22 just in case you want to check it out. I was so disturbed by that comment. I don't want to even go there. It will cause me to have a 'fit' again. That made me so angry and I just can't believe that person said that.
I only wish that person could suffer inside my body and then they would know. Why would a reporter or insurance person be on here anyways? I don't understand that. We have free speech. We can talk about lyme if we want and help each other.
Can we put pictures on here? I will do that if that is what it takes. People must think 15 yr. olds are stupid and can't be sofisticated, literate, and even on here for that. That is the dumbest thing I have ever heard.
Well, I hope that person is ashamed of themself and if I were them I would never show up anywhere again. That was completely wrong.
Well, I am sorry, but I was so upset when I read this. I teared up and I was at school in front of my friends. And they called me a 'BAD' reporter or insurance at that. Sorry...
I am sorry that I am getting so carried away, but it hit home when I read that. One more person in this world that doesn't believe me. And I didn't even get to walk into their office! lol
Well, anyways, Thanks so much nancyb for putting that on there for people to read. I try to be literate and write from my heart and put my feelings into words on here so people can understand me better, but they just think I am something I am not.
Atlanta is probably as far from here as Mobile is. I have never been to either one so I am not sure. We did drive close to Mobile when we went to Florida last summer, so I think my parents would prefer Mobile.
What is Camp A and Camp B?
I am not sure if my dad would order the kit. I looked at it and it seems like the only thing I can do myself. There are several blood places I go here to get my blood taken so that shouldn'tbe a problem. I have money in my savings account that I would be willing to use if it helped. My parents aren't exactly rich. We probably couldn't afford everything.
But, if it came down to it, I think my parents would take me to a llmd if it was the last resort.
I did find a llmd in Mobile and one in some place just north of Enterprise. Someone on here sent me a list of lyme doctors and they were the only 2 listed.
That is great that your daughter is feeling better and is able to continue on with life.
I am going to college this summer for a program I am in with North West Shoals Community College called Upward Bound. And we go to college during the summer to get ahead with our basics. I hope me being sick does not interfere with it. I have been looking forward to it for a long time now.
I am scared that I will get severe neurological symptoms. I have depression and anxiety and my depression has been getting worse. I think the depression is half way caused by not being able to figure out what is wrong. And people not listening and stuff.
I do think when I hit that neurological point that people will have to take me seriously. I think that will be the turning point. I hate that it is going to take me getting much worse before people will listen and help.
Wow, you would help set up an appointment? That is amazing really. I hope that maybe I can convince people and try to get my parents in on everything. Then tell them I want to go to Mobile or wherever to see a doctor.
I have some money in the bank I have been trying to save for a car when I turn 16 and for college, but I would be willing to give it up if it meant helping myself. I would get a job, if I can do that. Most people here won't hire you unless you are 16.
But I would try. I am afraid to work with my dad now. I was asked to go with him this weekend, but I couldn't. I felt really bad. I get depressed because I want to go, but I JUST CAN'T...it makes me feel so small. I just wish he knew.
Wow, you would be willing to go with me? My heart quivered when I read this. I can't believe someone would offer to do that. That is the nicest thing ever. Hopefully I can convince people and get to an llmd.
I wish I knew someone here that I could meet and compare myself to personally. Someone to talk to and fall back on. But, that really is amazing that someone would go with me. That really is great.
I think maybe if I could go there to the llmd it would be nice to meet someone in person to talk to. And ask questions and compare myself. I mean, I may not have lyme, but it is like 1st, maybe, 2nd on my list!
Everything keeps pointing that way more and more. And my 'clean' MRI that I am having Friday will probably add to that! I will keep everyone posted.
Well, I hate that I make these so long. I waste so much of everyone's time. I am so sorry. But, THANKS so much for the help. And SHAME on whoever left me that comment. And I hate that they live in TN. Since that is my neighboring state. I know a lot of people that live in TN and most of them are NOT shmucks like that. (I only wish I could say what I really think of that person)
Luckily, I am not that kind of person. I just feel that person should be ashamed, and they totally messed up. And it is NOT right to judge me like that when they do NOT even know me.
THANKS so much for the help, advice, and support. It means a lot. It really does hit deep down that people are caring. (well, most people) For those people who care, I thank them and I am very grateful to be apart of this!!
THANKS!!!
-------------------- 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 have been thinking about my career in medicine. Because I will be graduating in 2 years. I wanted to go into emergency medicine, but I have been thinking about like LLMD, rare things like that. Things other doctors don't know so much about.
I think it would be amazing to help people who can't be helped by anyone else.
Well, I got mad at my mom because my aunt called. They talked and she said she didn't think I had fibro, but she did know someone who had lyme and it took them a while to get diagnosed and they had to had IV treatment for 6 months. But, she didn't know much about it.
I knew more. But she didn't say what her opinion was because my mom went off talking about something else. She said I probably had Strep Arthritis from my high ASO. I threw a fit saying that it would make sense if joint pain was my only symptom.
I went to my room before I blew up in her face. Then, I when I came out she said 'now that you are over your angry spell...what else do you have...' she said I had never told her anything before!! YEA RIGHT!!! I said' YES I HAVE...YOU JUST WEREN'T LISTENING LIKE USUAL.'
So, I came and made a list. It has "57" symptoms on it!! And I didn't put a few on there. It would be around 60-61 had I put everything on it!! That is amazing. I didn't know myslef it was that much.
I re-looked up Endocarditis because it can be a co-infection of Lyme, and I think it is possible that I have it. The symptoms I have for it are: fatigue, weakness, chills, night sweats, muscle aches and pains, shortness of breath w/activity, splinter hemorrhages, joint pain, and NUMBNESS!!
That is 9/16 a couple I am not sure about. But, the numbness thing I have been having I thought was caused when I cross my legs and cut the blood circulation off. Which would make sense if I had a heart condition.
I also have the symptoms for mycoplasma infection. (I read about it on a post on here and looked it up) Basically, cough, allergies, hoarseness....same stuff I have been having lately.
Well, I am going to make out a chart of my symptoms and give it to my mom. She will flip and not believe it, but it is true. She will be amazed.
Oh yea! This is off subject, but Guess What!!??
I drove for my first time today!! My mom let me drive. It was awesome! I did a really good job too! I am sorry, but I am so excited I thought I would say something. I feel like everyone on here is like a second family so why not tell!
Well, I will get started on the chart for my mom. And see what she says then. She won't believe or take it seriously, but she will get over it. She just thinks she knows everything about me! I never complain about anything anymore so she doesn't know anything!
It will be a rude awakening for her, but she will get over it! Maybe then we can get something done! Hopefully!
Thanks so much for the support and encouragment! I really appreciate it!
THANKS!!
-------------------- 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 made an Excel spreadsheet of symptoms in one column and either: often, sometimes, or seldom in the other column. It tells my symptoms and how often they occur.
It is pretty good. I will see about putting it on here, maybe. It is missing several symptoms, but uh well. It has 53 sypmtoms listed!
UNBELIEVABLE!! I did not realize I had that many until I wrote them all done.
Well, it is late here and I have to get up early for school so, thanks a lot!
-------------------- 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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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I don't know how you possibly get up for school. My daughter had all those symptoms and couldn't get out of bed.
Posts: 2903 | From AZ | Registered: Feb 2006
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Hi again christi, I read your last post. Please let me know what city you live in (how far from Phenix City). I have just started as moderator for Alabama Lyme @ yahoo but there's not much info on there yet.
We should talk as soon as possible and get an appointment set up. You should not try to order any lab tests on your own. All of the ones we did locally were negative. It was not until my daughter had a challenge of specific antibiotics that 3 out of 3 tests showed positive and that regimen should be directed by a LLMD.
You will need to write a brief history of your illness, get all of your labs and studies along with the results and any other pertinent medical records from your physicians. Once you have this together, we can FAX this information to the LLMD that my daughter saw and then get an appointment set up if he feels he can help you.
I will get costs for the visit, labs, trip, etc. together and then see how much money we would need to get in donations if it is more than you can afford. Also, do you have any insurance that would help with this, reimburse you, etc.? Since LLMD's don't usually accept insurance, payment is made up front then insurance payment is made back to you if approved.
If you seriously want to do this, then I wouldn't waste any more time on what people say about you or what they think about you. Save your energy. You should be under the care of your family doctor, a psychiatrist possibly for the depression and also a LLMD. These doctors should be able to help you get approved for home school so that you can rest and get better faster as well as not miss any more school work. My daughter did not attend the 11th or 12th grades. She had a home-bound teacher. She did pass her exit exams the first time and graduated with her class.
Looking forward to hearing back from you.
p.s. Please print these last posts and let your parents read them. I've been there, done that. Would be very happy to talk with them.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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I see on your MySpace that you live in Florence, AL. I visit my aunt in Leeds, AL (near Birmingham). How far are you from there? I have 2 friends there that have documented Lyme Disease.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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bettyg
Unregistered
posted
christi, i have comments for you from reading from start to finish here:
locked bedroom door ... sorry, but a bedroom door should never be locked in my humble opinion.
glad your dad said he knows about your computer emails. print off this entire thread you started, and let them read it.
MYSTERY ILLNESS - LYME; did they see it?
have you watched UNDER OUR SKIN documentary trail yet if you do NOT have dialup; can't get dialup. that would be good to watch with your folks; 20 minutes i believe.
reflex sympathy syndrome -- another thing to look into since it affects athletes ... their feet, ankles, etc. i learned of this on pax tv show, DOC, with singer/actor Billy Ray Cyrus in it.
graduation exams - you are taking these? you're 15 and a senior? please clarify this ok.
troll...yes read in treepatrol's newbie links about trolls/troublemakers.
as lymemomtoo said, she is NOT calling you a troll. she just commented you may not be getting enough responses per your wants because we've been under attack really bad for 6-9 months with even a "dr. imposter troll" giving out medical advise.
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quote:Originally posted by bettyg: locked bedroom door ... sorry, but a bedroom door should never be locked in my humble opinion.
I'm sorry Betty but I'm trying to figure out what your humble opinion about locked bedroom doors has to do with Christi and her illness?
I do not see this as a comment that can help Christi move forward with getting treatment - which is what we are all trying to do - and it is yet another unnecessary thing for Christi to read and see that others are passing judgement once again.
Some people still do not respect what a closed bedroom door means (like little brothers and sisters) and a lock may be necessary.
Besides, if Christi's parents have an issue with this, I think they would have removed the lock.
Also, it wasn't Christi who thought Lymemomtooo was saying she was a troll. That was a misunderstanding of how LM2 interpreted my post and her response was directed to me.
I apologized right away to LM2 for causing the misunderstanding as I was only trying to put people at ease with Christi by telling my history with finding Christi on another forum. Unfortunately, I don't think the apology was accepted because she didn't offer any response in her following post.
But now getting back to the issue at hand - your illness - Betty does have good advice about watching the shows about Lyme as well as the movie trailer. I'm pretty sure I gave you the link to the trailer when we first started talking.
quote:Originally posted by paulamea: If you seriously want to do this, then I wouldn't waste any more time on what people say about you or what they think about you. Save your energy. You should be under the care of your family doctor, a psychiatrist possibly for the depression and also a LLMD.
Christi, this is the best advice I have seen for you yet.
All of these unnecessary tests and doctors appointments are using up valuable time and money. You need to focus all of your energy on seeing a LLMD.
Paula - thank you for trying so hard to help Christi move forward with getting a diagnosis. I live in Canada and I can't be of much help with helping her find a LLMD.
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Good morning.
I'm sorry you've been through so much.
My daughter will be 15 next month. She has lyme, which started with aching knees.
Fortunately, she had a MOTHER with lyme -- ME!
So she was spared the duck run-around you've endured and not been able to get past.
I quake to think of what she'd have gone through otherwise... Xrays, MRI's, steroid shots, etc., etc. NO ONE WOULD HAVE THOUGHT OF LYME, even though we live in an endemic area~!!!
Possibly you've been given an ELISA - a nearly worthless test promoted by most docs as the first step of lyme testing. Likely it was negative, thus you never got the more accurate test, a western blot. More than half of later stage lyme patients are negative by ELISA, and positive by western blot. More about that here: Why a negative ELISA means squat.
And another thing:
While it's true that some people are bedridden from lyme, most are not.
Thus, I don't take your continuing ability to go to school as meaning you don't have lyme.
My daughter has not only continued in school but is an honor student. She's in advanced English and writes beautifully, as you do.
She is also CDC positive for lyme, but has responded really splendidly to two courses of treatment - lasting several months each. Most young people respond really well -- far better than us old geezers!!
I second the suggestion for an IGeneX western blot -- your LLMD will have you do it anyway. Just call them up and they'll send you a free kit. Have any doc sign off on it (claim it's to "humor" you!) and have a local lab draw it.
Don't lose heart.
And please forgive the doubters -- we've been plagued by frequent imposters, which you'll understand by reading about the 'lyme wars.' Everyone's suspicion index is high... Don't take it personally.
Being a teenager, your confidence level is already pretty low --especially after repeated batterings. Doctors who don't listen and parents who don't understand only reinforce that. The search for a diagnosis is horrid enough for adults who presumably have developed enough self-esteem to stand up for themselves, and unimaginably hard for a teen who hasn't had time to develop those life skills.
Your LLMD experience will be like nothing you've had before. Do everything you can to get there. Take all your medical records.
Soldier on, and good luck. Please keep us posted.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Hi Christi, please don't feel like I'm trying to bullnose you into anything (although it may seem like it), I'm really not. I just look back at the years we lost because I believed what the doctor's said. We had a diagnosis of chronic fatigue, fibromyalgia, psychosis, mono., headaches, chronic back pain, etc., etc.
At 16 my daughter had to sit on a stool just to wash a few dishes and was sometimes too tired to even answer the phone, yet kept right on taking her to the same doctors. When I read the Good Housekeeping article about a lady who did not give up on her daughter and eventually, after many psychiatric episodes, they discovered she had lyme and she was recovering, I was was like a missile, one thing on my mind and that was trying to prove to everyone that she had lyme. I knew in my heart that she had lyme (later I learned that I also had lyme) because we lived on 10 wooded acres, had deer all around, mice, etc.
Anyway, I went round and round trying to "prove it" without much success. Wrong tests, more medicines, told she would "never be the same". I eventually took her to the University of AL at Birmingham to see 2 infectious disease specialists. I had every record, everything I could find from the computer, books, etc. and they never even let me show them any of it. They read over the referral, looked right at me and said """she doesn't have a speck of lyme disease in her body, we don't have lyme disease in AL""". I almost went bizirc. That seemed like the last straw. Where was I to turn if the specialists at UAB said she didn't have lyme?
A friend later told me of his friend who'd had lyme and been treated. I contacted him, we met at Shoney's and had the most interesting conversation. Everything he had gone through before he started treatment was so similar to what my daughter had gone through. They related instantly to each other's struggles. We were more convinced then and he gave us the number to our LLMD. (p.s. - he is better now from lyme but continues to live with the after-effects of treatment (yeast) from doctors who were not knowledgeable in lyme yet tried to treat him anyway).
We saw our LLMD not long after that, he immediately started by daughter on treatment and ordered specific tests for her after she had been on the treatment for a few days. These tests were sent to Igenex and 3 out of 3 were positive.
Yes, there's a lot more to this story but bottom line is that you first have to have a diagnosis which is sometimes difficult but can be done by a caring and interested physician. Our doctor spent 3 hours with us on the first visit. If he feels symptoms are consistent, then he will start treatment and if you start to get better, then it will all have been worth it.
Anyway, the most important thing now is to have someone directing your care and treatment, someone who is knowledgeable and caring and who can start helping you get better......
Sorry this was such a long note but I feel it is important for you to focus on finding a road to get better.
p.s. My daughter went on to get her learner's license, her driver's license, she graduated top 10% of her class and now works for the Sherriff's Dept.
also in AL, you have to pass all parts of an "EXIT EXAM" before you graduate. This test is given several times to students starting in the 9th grade. I think that's what Christi is referring to.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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bettyg
Unregistered
posted
nancy, i stand by my comments as they were typed. it's my observation; nothing more; nothing less ok. END of subject.
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Well, first off, I appreciate the replies so fast and so many! I had to read each one and right down what I was going to say to reply because I forget once I go to reply! So, I am going to go by person and reply!
kelmo- I absolutely hate getting up for school. I just want to keep sleeping and laying there. It is the worst time for me in the morning. I get sick to my stomach in the morning if I get up to early! It is awful.
paulamea-I have BC/BS for insurance, I think. And they are really picky about stuff. I had to go there medicine and therapy just for them to approve my MRI for Friday! Honestly, I have wanted to be homeschooled because I hate being in crowds. I hate being around people. I am very anti-social now.
I don't like to talk to people much. Or anything. But, I also take certain advanced classes and AP, and online classes that I can only do at school. I could probably do them with a teacher from the school coming and bringing my work or whatever.
I am also in a program with North-West Shoals Community College called Upward Bound. That is in Muscle Shoals. If you have ever heard of it, but it is threw our school and we get to go to tutoring once a week and we get paid $8 each time we go. We get FREE cultural trips to colleges and stuff. We also get to attend the summer semester at Shoals College.
We take our basics and that way we get ahead and get to experience college life. And this is all FREE. It is for students who's parents didn't go to college and people with low income. So, it is a huge deal that I am in it. There are only 3 from my school!
We do have to take our graduation exam starting in 9th grade. It depends on the classes you have taken. I have been in advanced math and english since 7th grade so therefore I got to take math a year early. I also took science. I passed both!
Then, every 10th grader is required to take whatever they have not yet taken in the spring. Which was last week. I had to take english, history, and reading. I am really sure I passed all of those!
I have been to B-ham many many times. My little brother had a brain tumor when he was 2 so we have been to Children's Hospital many times. Also, my older brother had a heart murmur he had to go there for. But, from here it is about 3 hours. Sometime less sometimes a little more.
I just went there 2 weeks Saturday for an Upward Bound trip to UAB. And then the mall, of course!
bettyg- Ok, this is a sensitive subject. But, my locked door! Ok, first, I appreciate the opinion, and that is ok. Everyone has an opinion. But, I also have a good reason.
First, I have 7 brothers and sisters. They have friends who stay here 24/7. And I have little neices. Also, my family, does NOT know how to knock on a door. I tried to tell them to just knock and I would NOt have to lock my door.
People barge in constantly, they leave my door open, and we have like a farm of animals, so when the door is left open the dogs feel free to use my room as their bathroom. That is not to good either.
I would rather my stuff stay dry and stain free. It has become a habit that when I walk in my room I always lock the door when I close the knob. Not for anything bad, but because I like privacy where people don't barge in whenever. Where I can change and not worry about people walking in or I can write down my personal feelings or whatever without my privacy being disrupted.
I see what you are saying though and I agree. Only if there were not so many people in my house and they knocked before walking in.
My parents didn't see the mystery diagnosis. They aren't into medical shows like I am. I never miss it. I have seen every show on discovery health channel! I did, however record it on my DVR.
I am a sophmore by the way. We take exams starting in 9th grade depending on the classes we have taken. Everyone takes all of them in 10th grade no matter what and then if they are failed they have every fall and spring to try again until they graduate. But, if they are not passed you have to have summer school and you don't get to walk with your graduating class.
nancyb-I know people think the locked door thing is weird or wrong, but they don't live in my house where people don't know how to knock or anything! I just like people to leave me alone. I don't like being around people.
Thanks for the link I will be sure to watch that. I do agree that that was the best advice I had gotten yet! And I am so very thankful and grateful that someone is willing to throw me in there so fast and help me out!
MichelleM-I am also an 'A' honor roll student. I take advanced, AP, online, and ACCESS(AL online computer class thing). At the beginging of the year I was ranked 7th out of around 140+ students in my class. I have had a 100 average in all of my classes since then so I am probably in the top 5 by now.
I am so glad you can understand what I am going threw.
paulamea- UAB is the closest best place to go, but when they don't know what is next? You know. I did see an orthopedic specialist from B-ham once. He just told me to go ahead with my foot surgery.(which I did) And that was all.
I also just got my permit in January, I think. I drove for the first time yesterday! It was very cool! Scary at first, but then it was really cool! I get my license July 28!! That is my SWEET 16!! Yay!
Well, I think that wraps it up...I am sorry it is so long, but I tried to reply to everyone who had replied to me! I probably forgot some. I had to write most of it down on my sheet of paper so...
Thanks for the advice. The help. The support. And the stories. I enjoy reading them! Oh, and I appreciate that someone actualy went to my myspace and checked it out. I think you can learn about about me and my personality on there, just by everything I have and stuff.
Thanks so much. And sorry for taking up so much of your time. 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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BTW, my myspace, www.myspace.com/wilson_gal22 , has pictures of me if you want to put a face with who you are talking to! Thanks!
-------------------- 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 was just wondering paulamea, or anyone else, if you guys have AIM? Or AOL if that is what you say. Just instant messaging. I think it could be easier than this. But, I also have MSN but I seldom use it. I stay on AOL/AIM because I am always on my computer! But, anyways, if you would like to talk to me my screen name (s/n) is GolfGry22 ....Well, thanks!
P.S I actually think it would be good for some of you to take a look at my myspace. I know there is alot of talk about it and teenagers, but I think you guys would know me more if you just looked at it too. Just a suggestion. Or if you want to put a face with me then it is the place to go!
THANKS!
-------------------- 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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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by wilsongal22: BTW, my myspace, www.myspace.com/wilson_gal22 , has pictures of me if you want to put a face with who you are talking to! Thanks!
Your profile is set to 'private' -- can't get in!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I know it WAS. Sorry. It automatically does that with people who are under 16 so I went and changed my birth year to 1990 so now it says 16.
You can try again and it should work.
PLEASE DO NOT FREAK OUT THAT MY MYSPACE SAYS "16 YEARS OLD" I HAD TO CHANGE IT SO YOU GUYS COULD BE ABLE TO ACCESS IT WITHOUT GETTING ONE OOF YOUR OWN AND EVERYTHING!
Just wanted to clarify before someone said something about me lying about my age or something. I had to change my age on there so everyone is able to view it now.
I AM ONLY 15!! So, don't pay attention to that part! Do enjoy it though. And if you are wandering about the Hawaiian stuff, it is because I want to go to Hawaii Pacific Univeristy for undergrad and graduate school!
I am excited and thought I get into the spirit! Do enjoy!
Thanks so much!
Hopefully you can learn more about me, my personality, what I like to do, and my interests beyond here. THANKS!
-------------------- 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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It seems like you would be tempted to feel powerless about finding a way to recover from your illness. But don't forget that you have faith, hope and love. And love never fails. I have been where you are not so long ago. I still have to wear my hair cut short because it is too thin and looks bad when it is longer.
But I am sustained because I have hope. And this Hope does not disappoint us. You know that Love is watching over you for good. You know that you are not alone. And you know that you are not a helpless victim of circumstances.
I was most tempted to feel helpless when I tried to pick up something heavy and my hand was so weak I dropped it. I wanted to cry. I felt like my body was a stranger to me. What was wrong? But I couldn't allow those feelings to paralyze me.
Go find yourself some good promises and say them out loud to yourself. You will be amazed how much healing there is in speaking the truth. (For some reason it has to be out loud to really affect your body strongly.) You don't need a doctor's supervision to speak healing promises out loud. You don't have to worry about an overdose. (Maybe you should worry about an 'underdose' though! [Smile] ).
And have faith that someday your need for your parents and a helpful doctor to understand will be met. Don't be discouraged if it takes time. You have patience. Use the waiting time to grow in your understanding so you can be able to partner with your doctor in your healing.
You will recover from this, and you will be a stronger, deeper, wiser woman for going through this!
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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Ok, this is the Excel spreadsheet I made of my symptoms. The symptoms, of course, are on the left and either often, sometimes, or seldom is on the right. It is 53 in all. Well, here they are. I tried to list everything I have/had before. Whether it was once or twice or everyday. I still listed it. Well, here it is:
Allergies:nasal;other--------------------sometimes canker sores (frequent)----------------------often Chills-----------------------------------sometimes night sweats--------------------------------seldom
often feeling hot/cold-------------------sometimes cough----------------------------------------often sighing-------------------------------------seldom headaches------------------------------------often hearing changes-----------------------------seldom
joint pain NOT relieved by NSAID's(ibuprofen-often muscle twitching-----------------------------often parasthesiasa(umbness,tingling sensationsometimes stomach aches----------------------------sometimes
blurred vision(sometimes)-------------------seldom runny nose-----------------------------------often pain migrate from joint 2 joint--------------often joint aches----------------------------------often joint pain without swelling------------------often muscle aches---------------------------------often
Well, that is all of them except a few that I didn't list. I know it seems unreal, but it is very real to me. This is just for reference. A more updated list and how often(or not) it occurs. Well, thanks!
P.S Remember to check out my myspace
-------------------- 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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Hi Christi, I've read your latest posts. Very detailed and very interesting. I will check back at your MySpace too since it's been re-set.
I know you're very busy dealing with your illness, schooling, etc. but you didn't say whether you have talked with your parents about my offer to help you get an appointment with a LLMD. I would be glad to talk with them on the phone, even meet your family in Birmingham to talk sometime but we should start working on a plan to get you help ASAP. Do you have all of your medical records, results, etc.??? Are your parents willing to take you to Mobile?? What are their feelings about me getting involved or helping with this??
I see that this post was started 03/01, there is a lot of good advice on here but have you taken any action already about getting to a LLMD?? I don't know what the rules are about posting my AOL screen name or my phone number, but you can private message me and I will be glad to give it to you...
I know that procrastination is a big part of Lyme brain fog which I had for many years (about 13), so I really understand how hard it is to concentrate and accomplish tasks that seem to be huge, but we need to stay focused on getting you this help ASAP. (Just wondering, but do your parents or any siblings have any symptoms of Lyme disease? Your parents may be dealing with issues themselves that are lyme-related and they don't realize it. I was in that boat as well.)
So back to the problem - Sorry to be a little pushy about this, but where are we at and where are we going? You are at increasing risks of developing neurological symptoms the longer you go without treatment if you do have lyme disease and that is certainly not the direction you want to go in. Also, you need to know if you don't have lyme disease so that you can pursue a different course of action but you should definitely be finding out a specific diagnosis so that you can start to get better.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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Hey, I haven't talked to my parents yet. I am not stalling or nothing, I just want everything to happen at the right time. I am gonna see what the MRI says that I have tomorrow mornin at 9. And then if I go back next week I am going to have my mom ask about it.
Just to see what his reaction is! I have told her that I found some doctors in AL that treat it or whatever and she didn't say nothing. I think if he doesn't do anything and if he even tries suggestiing scope surgery I am going to say no.
Because I know it won't help nothing but make it a worthless surgery that I have to go threw. I will then explain to her then that I want to do things my way now that nothing else has worked.
I am giving her a list of my symptoms and telling her about you and the fact that I am tired of getting no answers and I think a different doctor can help me.
Where exacting are you wanting me to go?
I don't have my records. If her and my dad say ok then I will get my records and everything to fax to whoever you want me to fax them to. I think if they can tell me by that if they can help me or not it would be good.
I would hate to waste a drive that far. Plus, my parents would have to take off and me and my brother and sister would have to miss school. And we would have to get a rental vehicle. (which we have done many times.)
I think though if I can explain myself and convince them and some other people that it is a good idea and they COULD help me then they would take me. If it is worth the drive and everything then they defiantly would.
I have not told them about you yet. I am just going to wait and see how the MRI goes and tell her to mention this to the doctor and see what he says. Then, I will say 'well, I know a person that is willing to help and I want to do it.'
Then, talk it over and everything and just convince them. Maybe talk on the phone or by AOL (which I will send you a private message about.) that might help them understand more about it.
As far as where I am at, I haven't told them everything, but I have started and they know more know. I told them about lyme and the doctors I found and I made a Excel sheet of my symptoms for them and whoever else.
As far as my parents or siblings, I don't think they really have any symptoms. Most of my symptoms are little things that I didn't even realize could be a symptom.
I could be wrong though. I mean there are many symptoms and people present in different ways. So...
Today was bad. I have been writing a research paper for english and last night I stayed up til 12 something,which I can NOT do. It makes me feel really sick and bad.
Then, last night I had a really bad dream that I was having a MAJOR muscle cramp in the back of my left knee. And I was moving and holding it and crying it hurt so bad.
Then, when I woke up this morning, the back of my knee hurt really bad and still does, along with my right knee that always hurts!
I felt like crap when I woke up and I wasn't all there. I was so tired. I slept some in class today. And I felt awful as far as I had a headache, stomach ache, and I felt, I guess, lightheaded. I guess you could say. I just didn't feel there. Like I was in my own spinning world.
And my cough has gotten a little worse. I don't cough constantly, but, it comes and goes sort of. When I do start coughing I can't stop.
Plus, I am super tired. The back of my neck is starting to hurt. And my right knee hurts at school so I prop it up on another desk or straighten it out. It doesn't hurt as much then.
I have a different history teacher thhis trimester and he makes us write about a 1/2 page of notes and I thought I was gonna die!
My writing starts off big and neat then goes to very little and scribbly. Because my hand hurts so much.
Well, I think that is everything. I might be forgetting something...
Oh yea, the neurological symptoms. I really hope I don't get those, but if I do then I will know for sure it has to be something. I sometimes feel like it is all in my head and it is just some fantasy I am making up or something.
But, I know it has to be something. I really hope anyways. I don't want to be crazy because there is nothing wrong. That would be bad.
Well, I guess that is about it for now. Thanks so much for all the help!
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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Hey, well, everyone will be glad, and proud, that I finally told my dad.
I went in his room and he was just walking around so I asked him if he was bored. He said why. I said because I have something you can educate yourself with.
I told him to look up lyme. We discussed it and I said it was high on my list. I may not have it, but it is better that I make sure first so I can move on. He asked to know what was wrong other than joint pain.
When I gave him my list he said,"well, 1/2 the things on here everyone has everyday." Like I said most things on it are little things people wouldn't think could be symptoms.
I told him and he said he couldn't help it was something I should ask the doctor to test for. I told him it often gave false positives and was more of a clinical diagnosis. He said to tell my doctor when I go back and asked to be tested or that he refer me to someone else.
I know the doc will not think so and that's when I tell them I know someone who can help me with getting a doctor. That's is when I mention Paula. And how she wants to help me.
Then, hopefully, they will go for it. I really hope they will. At least send my stuff to the doctor to see if he could help me or not. That wouldn't be a big for my dad to do.
If the doc thinks he can help then, of course, my parents will take me.
I felt very very very nervous about telling him. I am not really really close to my parents. So, it was hard talking about it. I just kept in the back of my mind that I wanted to get help and it was the only way.
I kept repeating the stuff people told me on here. That I have to talk to them before I can do anything else about it. And I really want something done so I knew I had to sooner or later.
Since Paula has offered to help me I wanted to go ahead and get everything out so maybe I can get something done. I felt weird after I had told him.
I will admit, I feel alittle better now that I have gotten everything out. Now, that I can start to get to what is important.
Thanks so much, I could have NEVER done that without you guys on here helping me and giving me support and courage. THANKS SO MUCH!
Well, I have my MRI tomorrow morning and then hopefully I will go to the doc next week. I will keep everyone posted defiantly.
Thanks so much! It means so much to me! Now I am going to bed because it is late(10:30!) and I have to get up early(8!) So, thanks so much!
-------------------- 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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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Well, you are having and MRI. They must believe something of what you say.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I am having an MRI on my right knee because he doesn't know what is causing the pain in my knee. This isn't because of anything overall. Unfortunately. Just my knee. I have had everything else, might as well an MRI. I have a feeling it won't show anything anyways.
Uh well, that is when I am going to ask him about lyme. Just for his opinion. And for a good story of how he refuses that it couldn't possibly be Lyme, not in AL! Which he probably will say something along those lines.
If he actually stays in the room this time! And doesn't end up out in the hall!
Well, thanks, time for me to go to bed! 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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posted
Hi Christi, I know you'll do fine with your MRI and then you just have to wait for the results. There may be something that they can fix in regards to the knee pain.
When you said you were going to see the doctor next week, do you mean you have a follow-up with the orthopedist or are you going to see a family physician? An orthopedist probably wouldn't be too interested in ordering any tests but you might could get your family doctor to order something. If he would, the best test he can do is a Western Blot IGG and IGM (do NOT do an ELISA test first and hope it's positive so that they will roll it over into the Western Blot). The Western Blot IGG and IGM have to be ordered specifically in the first place. This may not be positive by lab standards but it can be helpful when reviewed by a LLMD.
Ok, I'm very glad you talked with your father. It may be helpful for you to print out some of the personal stories of people who have gone through so much before finally being correctly diagnosed and treated for Lyme. The web site I listed earlier has the stories of Les Roberts and Kara Tyson. I have personally talked with both of these amazing people and they were very helpful to me and my daughter.
You mentioned being forgetful and also being in something like a "brain fog". These are neurological symptoms as described by many people with Lyme Disease. You can read more about this in some of the personal stories. Also I'm going to post my daughter's personal story and will post a link to this when it's finished.
The LLMD that my daughter and I saw is in Mobile. His specialty is in Internal Medicine so he sees all types of people, not only those with Lyme. I met both Kara and Les through him a few years ago. You don't need a physician referral to see him. I do believe your insurance may possibly reimburse you for visits to him as well. I just wanted to let you know that even if you do not have Lyme Disease, he can evaluate you including your past history and tests, then give you his opinion about your overall condition and the best course of action for you to take to start to get well.
This may be overwhelming to your parents with all of their responsibilities, but you seem to be very resourceful and level-headed. Just continue to keep them informed of as much information as possible. Hopefully they will have an open mind about this and help you as much as possible. You definitely will need your family's support now and in the future....
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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""""Oh yea, the neurological symptoms. I really hope I don't get those, but if I do then I will know for sure it has to be something. I sometimes feel like it is all in my head and it is just some fantasy I am making up or something. """"
This is from your earlier post this evening and I can tell you first-hand that if you were to develop neurological symptoms, it would not mean that anyone would "know for sure it has to be something". This would probably get you a one-way ticket to the psychiatrist for sure and then you would have one more doctor to convince which would certainly not make anything any easier.
Stay positive, pray, meditate, anything that you feel helps you is what you should be doing. Get lots of rest too. Also, it would be a smart thing to start keeping a daily diary with things like your temperature when you wake up, go to sleep, etc., how you feel when you wake up, etc., all of your symptoms on a daily basis. This can later be condensed but it can be helpful for you to see how your condition changes.
OK, I've said plenty, hope you have a great weekend...
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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posted
Yes, I have a follow-up so I can take my MRI pics to him to read. I guess.
Well, it was not bad(which I didn't expect it to be). The MRI was loud. Soothing in a way! I was sleepy though and I had to lay there for a long time. I felt like I was moving further in the tunnel when I really wasn't and I am clostorphobic. (spelling?)
I did good. He gave me copies to keep. And I have to take them to the doctor this week. I have 10 of them. They are very fascinating to look at.
It is my new hobby. My older brother is going to school to be a radiologist. I have been staring at them all day trying to figure them out. I mean the angles and what everything is. Not looking for something abnormal. If I had normal ones then I could, but I don't.
I brother said there was fluid in my knee. I am not sure though. It kind of looks like it, I guess. They are very strange though. I think I may frame one to put on my wall! Not really!
But since I want to be a doctor they are very fascinating to me to just look at. It is like artwork. All the little details and everything. It is the coolest thing I have ever seen. Better than all the x-rays and bone scans I have had.
Well, other than that, on my left leg the back of my calf muscle right under my knee is hurting worse. That was a really weird dream I had about it.
It hurts most when I sit for a long time and then get up. When I wake up in the morning it is very hard for me to even walk on it.
What do I do when both legs hurts?!
I don't know either. The left one hurts on the back and the right one on the front. Hmmm.... that is strange.
Well, I have had a very very long day. I have been all over town about 5 times and to about 15 different places. And I drove twice!! It is nerve racking.
Well, I am getting a headache and I am really tired. So, I am going to go to bed.
Thanks for everything. 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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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Christi,
I have been following your story and have to admit I am getting a little frustrated by your situation.
When I saw you had 7 brothers and sisters, well that helped me to see that your mom and dad must be very busy parents.
I think it is a positive sign that your Dad is now asking questions re: Lyme.
I think that this disease is often very difficult for someone who doesn't have it to understand.
My neighbor, who is a RN, who also has Lyme said she has never seen a disease like this which can affect the whole body in such a way.
I am still learning about Lyme and co-infections every day and I have Lyme/co-infections.
Continue to "gently" educate your parents. First, they obviously have a lot on their plate, and secondly, there is soooo much info. I think it is hard for anyone to digest.
I can appreciate your struggle to get somewhere. It was difficult for me and I am an adult.
I am praying for you and your parents.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I have been trying to slowly tell them more and more. I don't want to overwhelm them or anything like that.
But, I don't want to go to slow.
Like I said before, we are going to mention it to my doctor. Whether he knows anything about it or not, I am going to make sure he knows what we think.
The night I told my dad he didn't really relieve. But, I think he thought there was a chance.
He knows I am very smart and he trusts what I think about it. He said he knew someone once who diagnosed herself and she turned out to be right.
He said I should do what I feel. If I feel that strongly about it then I should tell the doctor. He knows how much I like to study medicine so I think he is just going to go with me on it.
I mean, I didn't just see it and say 'yes, that is what I have.' I saw it and read about it and I have come to the conclusion that I "could" have it.
I have a lot in common, a lot of the symptoms, and, under the circumstances, a chance to have it. I may be wrong, but it IS a start. A push to get to where I am going.
Hopefully, if I start saying stuff that they haven't thought of they will do whatever they have to just to make sure, even when they think I am wrong. They will probably do it just to prove me wrong, but that doesn't matter.
I just want to rule stuff out and move on to whatever is left. My orthopedist is really good about ordering tests. Usually if we say we want a test he will order it.
Probably so we will go away and stop bugging him! But, anyways, I am going to let him know.
Plus, he still has to read my MRI. Hopefully, that will go good.
Well, thanks so much and I will keep everyone posted. THANKS!
-------------------- 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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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Christi,
Don't forget that Lyme is a clinical diagnosis.
There are people who don't test positive on a Western Blot that do have Lyme.
Make sure you use Igenex lab to do the testing.
They also rec'd to my husband (who is getting tested via Igenex this week) that he go off his doxycycline (300mg a day for about 2 months)
ten days, then to test on the 11th day. They said he would be more likely to show more bands, following being on antibiotics.
He has been off 9 days now and is starting to back slide.
Don't be suprised or disappointed if your GP doesn't know much about Lyme.
I saw many MD's who refused to even test for Lyme as "we don't have that here".
Mind you my neighbor, myself and probably my husband all have Lyme disease.
This is just another step down the path of a journey.
A big one if you test positive, but not the end of the road if you don't.
Remember that the testing helps support a diagnosis of Lyme, but the reliability of WB's is still not 100%.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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