Ok, first off, I am glad to be on here. And glad someone told me about this place. Ok, I will start at the beginning and try to be as detailed as possible.
I am 15 years old. About 5' 4": 170 lbs. I am in the 10th grade now. When I was in the 7th grade(12 I think) I played basketball for my school team. I started having pain in my left knee. I went to an orthopedist and he said it was just tendonitis. Common for people who play sports. So, everything continued on and that was all.
Then, I had a lot of pain in my knee from running so I played volleyball instead in the 8th grade(13). I started having really bad pain in my left heel. So, I went back. He said I had a stress fracture. And he didn't do anything for it, just said what it was. That was in October 2004 I think.
Then, around January we went back. He didn't say if it was still there or not he just said to wear a boot and come back in a month.
A month later I go back and he says wear the boot, take aleve, and come back in a month.
The next month, basically the same. In April I had a cortisone shot. Didn't help at all.
May 1st, I went back and he put a cast on it. June 1st, I got the cast off. It hadn't worked. He referred me to a specialist for a second opinion. To make sure he had done everything right and that next I should have surgery. The specialist agreed. I had a nerve test on my feet to make sure I didn't have any damage that would need repaired. He said it was plantar fascitis. I had surgery July 19, 2005. The surgery did work and I don't have pain any more.
But, 2 weeks after the surgery, my arms started hurting. My right knee had been hurting. My wrists and elbows hurt. I went back about my right knee and he did blood tests. I had a very high ASO. He referred me to a rheumatologist. He didn't do anything about it. He put me on some arthritis drugs that didn't help at all. He did multiple blood tests. I had a ton of bone scans done. Nothing. X-rays. He failed to tell me for a year that he knew nothing about the ASO. He referred me to an Infectious Disease Specialist. He told me that the joint pain 'probably' had nothing to do with my high ASO. He said not to worry about the ASO being high. From what I have read, having a high ASO for so long causes heart problems, specifically, Endocarditis. Also, I have recently learned that if someone has Lyme disease and a high ASO the Lyme feeds off the strep antibodies in the blood stream. Therefore, the Lyme test will always be negative. But, the lyme actually feeds on the strep. That is very interesting. But, I couldn't find anything on the internet about this at all.
So, I finally said just forget it. I don't want to go back to the kook who didn't do nothing. I didn't go back for some time.
Now, I have all kinds of symptoms. Joint pain: knees, wrists, back, neck, elbows, basically everything. Depression. Abdominal pain. Chest pain. My ribs hurt when I push on them. Shortness of breath with activity. Headaches. Hoase voice sometimes. Sore throats. Cough. Runny nose a lot. Slinter hemorrages(main sign of endocarditis). Muscle pain. Fatigue sometimes. Mood changes. Irregular periods. Extremely painful periods. Very emotional reactions(more than before). Attitude changes(noticeable by myself and my parents.). Chills sometimes. Small muscle twitches. I shake alot but I don't know if that is a symptom. Knot-like things on the inside of my elbows. Concentration problems (ONLY sometimes). My symptoms come and go and are sometimes in different parts of my body.
So far, every blood test and everything have been normal. No one knows. I have had people on wrongdiagnosis.com tell me Hypothyroidism which is a possibility. I fit most of the symptoms. And I have an aunt who has it so it is in the family. Fibromyalgia. 2 People have told me this. I agree. I fit all/ most of the symptoms. And 6-7 people said Lyme disease. Which I agree. I took the survey thing and I circled about 22 symptoms. I am not sure because I have had some before, but they have only happened once or twice. I didn't know what to count and what not to count.
Well, I hope I got everything! I probably forgot a few symptoms! I went back to the original person I was seeing, my orthopedist, Feb. 28 07' for my knee and my wrist I hurt. The x-rays were clean. He said I probably sprained my wrist. He said the pain I was having in my knee was in the area where my cartilage is. He said I may have torn it. He is going to try and get an MRI of my knee. He said I have to take aleve AGAIN. Which I have been doing. And I have to go to physical therapy and go back to him in 12 days(March 12).
So, if you have any advice or you agree with something I listed let me know. Please try and help me. I really want something done. I don't know what to do next or what to say to him. If you can help me, please do so. I thank you in advance for your help. And thanks so much for reading this, I know it is long, but I wanted to be as detailed as possible. I would really appreciate any advice. Thanks! Christi
[ 31. March 2007, 03:55 PM: Message edited by: wilsongal22 ]
Posted by humanbeing (Member # 8572) on :
Christie, You are extremely articulate for a 15 year old!! First, I am so sad to hear all the pain and struggling with the diagnosis.
It is not uncommon with lyme disease. If your doc has ruled out everything else (which it sounds like he has), then it is time to find a lyme doc and have your blood tested by better labs.
Another diagnostic test for lyme is to see how you react to antibiotics. If your symptoms get worse on them, then lyme is stronly suspected due to the herx reaction.
Chronic Lyme is a multisytemic, multisymptom illness. there are not many other illnesses that do this (affect several body systems).
Keep advocating for yourself---I can already see you are gonna take charge by the tone of your post.
You will get well... Kim
Posted by wilsongal22 (Member # 11210) on :
Thank you very much. That is true. I think they have all ran out of stuff to test for! They just don't know. I think that is why they don't take me seriously. Because I keep coming back, and they don't know.
The 'herx reaction'? Hmmm...that means I haven't done all of my homework. I have read some things that say that, but I didn't know what they were referring to. I will be sure to look that up.
I read a lot. I like medicine and I enjoy studying it and learning more about it. I have learned a lot in the past ,say, year or year 1/2. I am constantly searching and reading about things that I 'could' have because I know it is real. I wish I could take charge. But, as a 15 year old, it is hard for people to take me seriously.
They think I just look up stuff and automatically assume that is it. I have done most of my homework...I narrow things down as much as I can. I learn everything I can and spend most of my time on the internet educating myself. It has been a year 1/2 and I have read about a lot. I have learned a lot.
I do believe that it could defiantly be lyme. I have a lot of the symptoms, a lot in common with it. I just don't know. Thanks so much for the advice. I will read up on the 'herx reaction' thing. Thanks so much! It means a lot. Christi
[ 01. March 2007, 06:06 PM: Message edited by: wilsongal22 ]
Posted by winsomme (Member # 5623) on :
couple of things:
for that ASO test, there is a condition called PANDAS which is apparently an abnormal reaction to strep bacteria.
also there is a group called the roadback foundation which believes conditions like Rheumatoid Arthritis are caused by a type of bacteria called mycoplasma and they think that the treatment should be long term low dose antibiotics.
there is also a Dr Nicolson who believes that a big portion of Chronic Fatigue Syndrome is caused be these same mycoplasma. he has a different treatment regimen that includes higher doses of antibioitcs that you rotate. also he has many secondary treatment suggestions.
look at his site under the "treatment section." one of the first few papers is his treatment outline.
finally, there is chronic lyme. the treatment guidlines are similar to Dr Nicolson's. check Dr B's treatment regimen for Lyme. that has pretty much all of it.
you will also need to see an LLMD. so if you post what region of the country you are in, someone near you will send you a list of DRs near you.
i know there is a neurologist in CT that is having alot of success with IVIG for the arthritis part of Lyme, but that would be in addtion to the antibiotics.
if there is any info here that you need more on, let me know.
thanks bill
Posted by wilsongal22 (Member # 11210) on :
Ok, thanks. I have heard and looked into PANDAS. And I live in the southeast United States. Alabama to be exact. So, would you say that you think it is Lyme? About 7-8 people have told me it sounds like Lyme. Or they say my symptoms sound like the ones they or their children with lyme are experiencing. Well, thanks a lot for the advice. Thanks! Christi
Posted by Lymetoo (Member # 743) on :
I had a hard time reading your posts because it's all in one long paragraph. Please write future posts in SMALL paragraphs. Thanks!!!
Did you say you'd ever had a tick bite?? Not that it matters that much....you could have gotten Lyme other ways or from childbirth if your mother had it.
I would suggest finding an LLMD right away and get evaluated. The regular tests out there miss most of the cases of Lyme.
Igenex Labs is one of the best labs to be tested through.
Oh, I am so sorry. I was just caught up in getting my story on here. Everything just sort of flowed out at once. I will remember that in the future!
Ummm...I live out in the country. Around woods, fields, pastures, and other stuff. There are a lot of ticks around here actually. I have been bitten by a tick before. More than once. Ticks are common here in the summer time, but I don't think the people here are really aware of Lyme disease. I have told several people and they ask me what it is. So...yea.
Thanks for the advice! I will be sure to look into it. Thanks so much! Christi
Posted by wilsongal22 (Member # 11210) on :
I forgot to mention one more thing. I don't know if it plays a role at all, but it is weird to me. Ok, I can't sit criss cross. My right leg from my knee down goes completely numb. It is worse starting at my foot working its way up. I can't feel my toes when I move them. And it starts feeling kind of cold-like. I don't know if it goes further than my knee because I usually get up because it is very uncomfortable. But, I am sure it doesn't. When I stand on it it hurts some and has a terrible tingling, pins kind of feeling.
I am not sure if this counts as anything, but I never know when something can be helpful. It could mean something. Or not. But, it is really strange.
Thanks again for all the help. And the advice. Christi
Posted by bubbear (Member # 8976) on :
Hi Christi God bless you honey...check out the link below for the newest testing info....Hang in there.
Oh my goodness...the scariest thing just happened to me. I was telling about me sitting criss cross... I was sitting criss cross while writing that and when I got up I couldn't stand up. My leg just like folded. And I couldn't stand on my right leg.
That hasn't before. Usually it just comes to and it is very painful and when I move my leg is hurts really bad. It has a tingling, pins and needles sensation.
Then, eventually it goes away, but it hurts for a while and tingles. The back of my knee jurts really bad until it finally goes away.
This was really scary because I couldn't stand up. I like fell and it looked like my leg folded into jello. It was very strange. Ok, I thought I would add that since I have never experienced it before and it was so scaring. Thanks. Christi
Posted by Lymetoo (Member # 743) on :
That's rather strange, but everything about Lyme is strange. We're never surprised by anything it hands us.
BUT....Don't ignore it. Be evaluated by a dr who knows what's going on with Lyme.
Posted by wilsongal22 (Member # 11210) on :
Yea, you could say that. I thought it was rather strange. Well, scary and painful as well, but strange.
How can I go about getting a doctor if I am only 15? No one takes me seriously. I have told people and they don't seem to care or really believe it. Because they haven't heard of it here, but it is here. It is one of those invisible conditions that no one really realizes is there.
I can't do anything about it. I try. Well, if only I were older.
Thanks for all the help. It means a lot that people some where care...thanks. Christi
Posted by wilsongal22 (Member # 11210) on :
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.
I would really appreciate any advice, support, opinions, or suggests. Anything. Do you agree? Disagree? Have your own opinion? Please share it.
Thanks so much for the info so far. It means a lot that someone out there is listening. Thanks so much. God bless. Christi
Posted by bubbear (Member # 8976) on :
Talk to your parents....They can help you find the help you need.
Posted by wilsongal22 (Member # 11210) on :
Actually, that is really hard for me to do. I have never been really comfortable talking about anything. I have said more on here than I have to my parents or to anyone else. It is just I have never had any problems before. I have never had to go to my parents for anything. Not like this.
It is hard for me to tell them everything. I don't know why. I have just never felt that connection or comfortable with them. I can mention stuff to my mom, but she isn't the sharpest tool in the shed if you know what I mean.
She doesn't mention what I say to the doctor. She just thinks I am overreacting or something. She doesn't take what I say seriously.
And my dad...well, i don't know what to say about that. He read some stuff on here that I have written and he didn't like the part where I said my parents aren't behind me and stuff.
I argued with him and that's when I shifted into 'mood change mode'. I get angry and just walk away with an attitude and say whatever.
I walk away and they get mad, but it is because they won't listen to me. It just doesn't feel right talking with them about stuff. I don't know why. That's why I wish I were older. I could deal on my own. And do everything myself.
I would find the doctors I need and tell them what I think and ask for the tests and everything. I would push them for an answer. But, I can't. This is the part where I go into 'depressed mode'.
I wish I could. I want to so bad. But, I can't. I read stories on here where doctors don't believe these grown people, why would they believe me? Or even take me seriously? I would think I watch to many doctor shows.
(Which I do, but that is beside the point.) I actually researched it all. I have other peoples opinions who have been threw the same thing. That's what makes me believe it. But,they won't.
I don't know what to do. I don't know what to say. I am so sorry and I wish I did and I could. I just don't think it will happen.
Well, thanks so much. Please continue and put your input. I really appreciate it. Maybe someday it will happen for me and they will realize it. Thanks so much. God bless. Christi Posted by kidsatlast (Member # 4308) on :
Dear Christi,
Don't give up. Keep writing to us and we will try to find a way to help you.
I agree that it would be difficult for a 15 year old to get medical treatment without an adult's help.
Since you say it is hard for you to approach your parents about getting a diagnosis, could you perhaps talk to a guidance counselor, a teacher, a friend's mother, a coach, or someone like that who might listen?
Then that adult might help you discuss it with your parents.
You could print out this series of posts, since you have outlined your experiences so beautifully, and the adult could read it.
Do you have a pediatrician or just the orthopedist who has not helped you?
Elizabeth
Posted by bettyg (Member # 6147) on :
welcome, i'm sending you a PM, private message, with my 46 pages of newbie links, advise, symptom list,
you need to have a western blot igm and igg blood test done .... read about it in area you see IGENEX listed. bedtime here.
Posted by Karenelee (Member # 11044) on :
Christy,
First I want to say, I admire your resourcefulness in researching what is going on with you. And if you have a sincere curiosity about medicine, please study your science courses, do well and perhaps go to college and develop a career in medicine.
We need all the curious people we can get in the medical fields. I sometimes think the problem with the doctors who don't help us, is that they have lost their curiosity. They don't want to find out what they don't know. My opinion.
Second, using your resourcefulness, can you devise a strategy to communicate with your parents in a way that works? It may take a bit of invention, and a bit of strategizing on your part. Think about how they *do hear*, and then try broadcasting your SOS on that frequency. Apparently their "radio" doesn't pick up your current broadcast frequency that well.
It does sound from your dad's reaction that he does *want* to help, and that's a good sign.
Can you look into finding a Lyme literate doc, or another doc who is willing to run the Igenix Western blot test for you? It might be good to have a ready answer, if they do decide to help, that you say, "this is what I need, this is who I want to see."
Of course, as you'll find out, the IGeneX wester blott test can detect Lyme, and it's one of the best tests for detecting Lyme, but it sometimes gives false negatives. That is why it would be most helpful for you to get a Lyme literate doctor, who can sort out the situation.
Financial issues may be part of the equation as well. Insurance may not cover the doc, or the tests, or only cover part of it. Please know that being on your own would likely mean trying to do this with no money and no insurance.
Your parents are a resource to you, and they clearly want your good health as they have been taking you to see doctors, but just like the rest of us, there is a period of going to the *wrong* doctors, doctors who don't know what going on with us, really, or can only diagnose the symptoms of our illness but not the cause.
I suppose you've heard to avoid Infectious Disease Doctors. I hate to generalize, but it seems like they don't believe in Lyme, except in very specific acute infections and when there has been a rash.
I can't really give an opinion about your symptoms. Lyme is multisystemic, complex and different from person to person.
good luck,
Karen
Posted by Geneal (Member # 10375) on :
Dear Christi,
I agree with the other posters that you need to find a Lyme Literate Medical Doctor in your area.
Print out a Lyme check list. As Lyme symptoms come and go and change a lot, check off every symptom that you have had...not just the current ones.
I remember being 15 yrs old and thinking my Mom (who raised 3 girls by herself) wasn't the smartest tool in the shed either.
It wasn't until I left home and went away to college that I could truly appreciate my Mother.
Talk to your parents. Show them the checklist. Ask them to get you an appt. or at least a Western Blot from Igenex lab.
Be honest and truthful about your symptoms with your parents. They can not help you if they don't know what is going on with you.
When I was almost 18 I had gone out with my friends. Will admit I had some alcoholic beverages (legal drinking age was 18 at that time).
Got really sick. My mom was furious with me as I was underage and now home from school.
However, she did take me to my doctor when I progressively got worse. Couldn't hold water down.
Guess what? Hepatits A that was aggravated with alcohol. I was about 8 hours away from death from dehydration when I was admitted to the hospital.
My mom was mad, but her first priority was my health.
Your parents love you. They may not understand you or you them, but that is a typical relationship between a teenager and their parents.
Again, be truthful and honest. Express your fears and knowledge re: Lyme and past history of being bit by ticks before.
I live in La. I don't recall a tick bite, or a rash, but do have Lyme (as does my neighbor and possibly my husband).
I also live in the country where there are deer, mice, cayotes, owls, wild turkeys, bats....etc.
I went through many specialists trying to get dx. with something.
Most people around here don't know what Lyme is either. I really didn't until I was infected.
If you need to, print out the Lyme info and have your parents read it along with your symptom check list.
You need their help to get help. Remember, even if you don't feel like it all the time, you are their child. They love you.
Sending you positive thoughts and prayers.
Geneal
Posted by Truthfinder (Member # 8512) on :
Christi, do you know anyone in your area who has been diagnosed with Lyme Disease?
My thinking here is that if you know or could meet someone personally, perhaps they could act as an advocate for you when it comes to talking about this with your parents.
It's just a thought.
Boy, I sure wish I had as much on the ball as you do at 15 years of age!
Tracy
Posted by wilsongal22 (Member # 11210) on :
Thanks a lot to everyone who has responded. I really needed that.
I am not good with approaching adults with my problems, but I have beed progressively pushing my mother on the subject. I tell her the new stuff I learn each day and how it relates to me and lyme.
Even if I don't have it, I relate to it a lot. And it is worth trying. Seeing as we have tried everything else.
I stay curious about medicine. To me, it is the most interesting thing in the world. How different everyone is. How they have their own personally. Their bodies are all so different. Yet they look so much alike. How even the tiniest thing in the body can make such a huge difference, To me, it is so amazing at how everything in the human body can work together to form life. How different life would be if only one little gene were missing. It is incredible.
I don't really have a pediatrician. I do have the orthopedist that I go to. Whom asks like it is just nothing. Just because he twists my leg every different way and it doesn't hurt. Doesn't mean there isn't nothing wrong. I mean I have pain. Not from turning it this way and that. Just pain whenever, wherever.
I know my parents want to help. But, they are kind of with the doctors. They don't know what is going on. If anything is. They, like me, don't know how to keep going about everything.
I tried looking for a doctor, but I don't kow what to look for. I have been to an Infectious Disease Specialist before. I haven't heard to stay away, but I probably wouldn't go back seeing as he couldn't help me the first time.
I did print out the ckeck list and circle the symptoms I have or had before. I think it was like 22/75. I think.
"I also live in the country where there are deer, mice, cayotes, owls, wild turkeys, bats....etc" I am the same way. I live in the country. I stay outdoors a lot. Or I did. I don't really anymore as much as before. But, I used to walk threw field and threw the woods and everything.
There is this one field were we made a dirt-bike track. And every summer around the same time. It has tons of ticks. You can walk down one of the trails and have 5 of them on you. I don't go threw there anymore because I am like phobic to ticks and thing like that.
I don't know anyone in my area who has lyme or has had lyme. I don't think most people even know what it is. Or how you get it. I wish I did. It would be easier for me to talk to them. Because they would understand.
"Boy, I sure wish I had as much on the ball as you do at 15 years of age!" Thanks, I actually get that a lot.
Well, I think I answered everyone. If I didn't just let me know. I will gladly go back.
Thanks so much for all the advice, help, and support. It means so much more than I can put into words. So, thanks! God bless. Christi
Posted by wilsongal22 (Member # 11210) on :
Well, therapy went well. /he had me do some exercises and then put electrodes on my knee with an ice pack. I to go twice a week.
Posted by groovy2 (Member # 6304) on :
Hi Christi--
Its hard for anyone to get taken seriously by Most doctors -- and even harded when you are so young --Just keep trying --
Also remember that just like this is the first time that you are a teenager this is the first time that your pairents have been parients --
It sounds like you have Your act together-- So it looks like you are going to have to Help your parients Help You --
Maybe try to get a Teacher or councler at school to help you in handling the problems that you are having getting help from your pairents --
New subject--
From the symptoms you mention so far you Do sound like you have Alot of the most noticable symptoms of lyme and or co infections --
Also the Leg crossing thing is a symptom of Babs --
I hand very similar type of Leg crossing symptom that I had for many years --
It almost completely dissappered after just 2 weeks of Babs treatment --
I think doctors have not fully reconized this symptom because patients have a Hard time discribing it Clearly to there doctor ect --
If I had not gone threw it myself and had such Quick reliefe of this symptom-- I dont think it would have been so clear to me --
Also you have seen the TV comericals for RLS--Resless Leg Syndrome--
One of the Main ingreadents in the meds for this is Quinine --
Quinine is used to treat Melaira (spell) and for Babs Babs is a Very close relitive of Meliara
One thing you can try is to get Tonic Water-at your local store--
Tonic water has a small amount of Quinine in it and Amazingly it has helped me Alot-
Reliaze that the Tonic Water will make you Herx--
A herx is caused by the Die off of the different germs bugs ect that are in your system --
Usually a herx is discribed as a increase of your symptoms and sometime new symptoms will appeare--
Even tho they are painful and No Fun at all Herxes are a Good thing --
Herxes will happen Most anytime that germs -bactira -parisites and things like yeast infections (Candida)- Die off --
Basically when the bugs die they spill out a bunch of toxins --
The Toxins are what make you feel worse --
Unfortinatly its one of those No Pain No Gain type problems --
Also Realize that the the tests for lyme and co infections are perty much Usless at this point in time --
The most accurate is the Western Blot(WB) The test is fairly complacated and each lab has there- Own Way- of doing the test -
And the medthodes of the labs Very Alot- much more that you would think --
Many Many things can also sque the test results --
So Dont put much weight in your disisions on the results of these tests --
From what you have written -- I think you will be able to handle what life has thrown at you so far--
I also think that you have a Very Good chance of becoming a LLMD because of what you are going threw --
You have come to a Good place for help- Lots of Good Knowlage Here and a Vey Good group of Caring people --
Hope this helps you--Jay--
Posted by wilsongal22 (Member # 11210) on :
Thanks so much Jay. You have given me a lot of very good info.
I think the leg crossing thing is really weird. I sit this way while I am at my computer. Like I am now. I has become more frequent though. I used to have to sit here for a really long time. Now I can start feeling the pain and numbness in 5 minutes.
It is strange because people wouldn't think of it as a symptom. I never did. When I think back this happens a lot. The seats on the school bus are very uncomfortable because it hurts my back to sit straight up. I can't. I lean forward.
I scoot to the edge of the seat and put my knees up against the back of the seat and they get the numb feeling after a while. Anytime I put one leg over the other the one on bottom goes numb.
I thought at first it was just the weight of one leg on another cutting the circulation off the other leg. That doens't make sense to me. That part does, but it is just strange to me.
Yes, I have seen that commercial. Many times! Tonic water? Hmmm....I could try that. At least that is something I can do myself. Just as a test or experiment!
I did a lot of readin on the 'herx reaction' thing. Named after a German guy Herxheimer...doing a study on something and found that the reaction was people got worse before they got better.
Sounds bad to go threw, but at least it is a sign that you are getting better. I might try that just to see. As an experimental proof for myself! That might be interesting!
Well, today has not been that bad. I have been feeling a little better. I still have the hoarse voice(about week or 2 now) and I have been coughing still.
I went to my first physical therapy today. My therapist was really cool. He was nice and everything. He showed me exercises I have to do twice a day. The plan, he said, is to strengthen my thigh muscle to take some off my knee.
After the exercises, I have to put an ice pack on my knee for 12 minutes. Today though. He put electrodes on my knee and then covered it with the ice pack. It was a really weird feeling!
But, I enjoyed it. My knee wasn't hurting before I started, but it started hurting once the cold wore off.
I am going back Monday and Friday this coming week. And then I go back to my orthopedist Monday the 12th.(the next week).
He said my insurance won't pay for a MRI unless I have had therapy, so...maybe I will get one. I don't think the therapy will help. And I don't think the MRI will help.
When it doesn't the doctor won't do anything anymore because he will think that there can't possibly be nothing wrong if the x-ray and MRI show nothing and therapy doesn't help.
Well, thanks for the advice, help, and support. It means so much to me that I know people are reading my story and responding. Thanks. God bless. Christi
Posted by clairenotes (Member # 10392) on :
Christi -- you do have a few more obstacles to overcome here, don't you? It seems that you have two main tasks: 1) to convince others to get the necessary testing done or to get a possible a clinical diagnosis through a knowledgable professional, and 2) to get well.
Like everyone else here I am truly amazed at your intelligence and resourcefulness. Most of us know when something isn't right. And these symptoms do not feel 'normal' to me. A 15 year old's legs should not be going numb sitting for only a few minutes at a desk!
Please continue to use your gifts by speaking to anyone who might be able to help. I like the idea of speaking to a school counselor or teacher. Perhaps you could bring some information on lyme with you and a list of symptoms you have checked off? Then both of you can approach your parents. Maybe even write a small paper on lyme and what you have learned so far.
Lyme disease, as you know, is very complex and confusing and difficult to explain. So many different symptoms that affect us in so many different and unique ways (and they can migrate, like what you described). That is why it would be so important to rally the support of another adult so that they can help your parents to understand that this is or can be a serious illness if not treated properly.
Once you are able to get a diagnosis, I am sure that your LLMD will provide information on treatment options. But also, make sure to do a lot of research too. There is a wealth of information here and the SEARCH key comes in very handy. Also... ask as many questions as you need to. There is no such thing as a stupid question when it comes to Lyme disease.
Somehow this reminds me of some books my daughter loved (14 with lyme) when she was a bit younger called "The Series Of Unfortunate Events." The children in the story kept finding themselves in worlds filled with adults that just didn't seem to quite get what was going on, or had eccentricities that prevented them from seeing what was going on. They weren't bad adults (except for the villains) just impaired somehow. Lyme disease is our unfortunate event... but we can overcome it and people's attitudes surrounding it... we just have to be very clever, which is an asset you clearly have.
Please stay connected here.
Claire Posted by wilsongal22 (Member # 11210) on :
Thanks a lot.
I have an aunt who is a nurse or something. She is very smart when it comes to medical stuff. She usually calls at least once a week.
The next time she calls I am going to try and talk to her. I am going to ask her questions about it and try to explain.
Then, see what she thinks. If she agrees, I am going to ask her to talk to my mom about it. My mom listens to her.
If she tells my mom to mention it to the doctor or get me tested and let it be known, she probably will.
I figure if she won't listen to me, I will go threw someone she does listen to.
Thanks for all of the help, support, and advice. It makes me feel confident that I am doing the right thing.
Thanks so much. God bless. Christi.
Posted by wilsongal22 (Member # 11210) on :
Can anyone think of anything else I could have?
Thanks. God bless. Christi
Posted by wilsongal22 (Member # 11210) on :
I just did my therapy exercises and now my knee is blood shoot from the ice! It looks like a big red rash!
But, I have a slight earache now. And I have been borderline headache all day today. I have been feeling kind of tired today. I keep waking up early. Normally I sleep in when I can to catch up on my sleep I lose from school.
But, this week I have been waking up anywhere from 4-8A.M. Which is very unusual for me. I am not tired at night though. I just get bored so I go to bed. But then I wake up early and try to go back to sleep, but can't.
To me it is quite unusual. I have been feeling kind of tired-sick today. Like I am going to get sick to my stomach, but I don't. I have been feeling like I am walking around the house in a tired-like trance.
I also felt one of my muscle twitch things. And, my lower back has been hurting. It isn't that bad standing up, bu when I lay down and relax my back it hurts really bad.
I have also been feeling down about a comment my mother made yesterday. We were leaving therapy and she said 'Hopefully this therapy will work so you won't have to have the MRI.'
Something like that. It made me feel bad though. My mom spends a lot of time in doctor's offices because I have 2 younger siblings. So, she is always on the go. I sometimes feel like I am putting my parents threw a lot for nothing.
They have to pay for every visit and I never get an answer. And now, I have the feeling the therapy is not going to work. I mean my knee isn't the only thing that hurts. And I am pretty sure the MRI will be clear.
That will mean more money and time taken away from my parents. With no answer. I feel bad for making them go threw so much. Money doesn't exactly grow on trees here. So, I feel bad having to make them pay for the visits, gas, time, and sometimes rental vehicles. (to go to far away docs).
Well, thanks so much so far. I guess this is my update for today. Thanks. God bless. Christi.
Posted by wilsongal22 (Member # 11210) on :
Am I wasting time? I mean I go to the doctor for my knee hurting and he tries to treat that. But, if my pain comes and goes all over he is wasting his time.
Right?
I am also wasting time. And money. I has one of those nights again. I cried myself asleep thinking about everything. I finally realized that I am not being honest about the whole thing to everyone.
I am wasting so much and gaining so little. My parents know that I hurt all over, but they never mention it to the doctors. We just go for one thing and they try to treat it.
They could help me more if they knew everything, but then they couldn't help me because they are not the doctors I need to be seeing.
Should I get the MRI if he tells me to? Just in case or should I not bother? I figure it is a waste, but it COULD show something, right?
I am just very confused now. I don't kow what to do anymore. I know I need to speak up. I have spoken up, but only half way. I wish my aunt would call. I haven't gotten up all the courage yet to ask her, but I know I have to when I get the chance.
When, does anyone else have any ideas on what else could be going on?
Thanks for all the help so far. God bless. Christi.
Posted by clairenotes (Member # 10392) on :
Hi Christi!
No one can say for sure what you might have, because it would be against the law for us to try to diagnose your illness.
We can only say that your symptoms show a pattern that seems like the pattern of lyme disease. Jay did offer a possible scenario. Babs is short for Babesia. It is one of the co-infections that sometimes comes with LD. It is similar to malaria, and therefore is sometimes treated with malarial remedies.
It would be best for you to see an LLMD (Lyme literate medical doctor) to make that determination. If it is LD, than you might well be wasting your time with these other treatments. You might go to the DOCTORS section and post a request for names of good LLMD's in Alabama so that you can have some ready resources for your parents.
I have no experience with MRI's so I cannot offer any personal experience. Igenex seems to be the favored test by most members here to determine whether lyme is a problem.
We don't know why illness shows up like this sooo unexpectantly for some of us. But it is not like we invited it in. Please don't feel guilty. You did not ASK to be sick. We know that for sure, with all of your athletic activities that you were involved in. Tick-bite illnesses are on the rise!
It is true that LD can be somewhat expensive to treat. Very unfair and 'unfortunate.' But there may be some less expensive treatments that an LLMD could go over with you. Also, please do some research here. READ the success stories under GENERAL to see what helped others get well. Do research in medical for that information as well by using the SEARCH key. This is where your resourcefulness can really play a part.
I know this is scary because you don't want to burden your parents. This is a sign of a very thoughtful child. Still a reality exists and you need to be able to get on with your life, and back to normal activities that you are sooo entitled.
Claire
[ 04. March 2007, 09:16 PM: Message edited by: clairenotes ]
Posted by wilsongal22 (Member # 11210) on :
Thank you very much. I know no one can diagnose me. I was just hoping for other people's views and opinions on the subject. A lot of people so far have said it sounds like LD. That is good enough for me.
No one else has really said anything else that I could have. They just say I sound like LD. That reasures me though. Knowing that other people who have been threw or know someone who has been threw it say I sound like it actually makes me feel more confident.
I know there are tons of other things that sound like LD as well, but there is always a chance. With Lyme on the rise and giving where I live. (out in the country). Even if it isn't one of the main places where it is expected to be.
I will post about an LLMD in Alabama. So far I haven't met anyone from Alabama on here or any of the other site I am on. That isn't reasuring, but there is a first for everything!
I looked on the internet and couldn't find anything on LLMD's in Alabama. Hope that is not a bad sign.
Well, thanks so much so far. This has been a huge help to me. God bless. Christi.
Posted by wilsongal22 (Member # 11210) on :
Oh my goodness.
I just realized something that I think could multiply my chances of having Lyme. It never crossed my mind til now.
I think about ticks everytime I walk outside, but I don't think about when I went outside before and ticks. I said I spend a lot of time outside.
My dad mows lawns. I have been helping him since I was little. For the past couple of years I have worked with him a lot. Every weekend and the entire summer.
I started having my arm pain and everything more and more about 2-3 weeks after my foot surgery, which I think is just a coincidence.
I had been working outside mowing grass and doing stuff with my dad all summer til my surgery.
Funny how that didn't hit me til just now. Hmmm....but in my opinion that adds to the list of reasons why I could have Lyme.
Anyone agree? Thanks so much. God bless. Christi.
Posted by nancyb (Member # 10154) on :
Hi Christi
People have noted that their Lyme appeared to surface after surgery or other traumatic event to the body like a car accident.
Your activities with your father certainly puts you at a higher risk of being bitten by a tick.
Posted by wilsongal22 (Member # 11210) on :
You know...I have thought about that before.
With some people an illness that is invisible or just not showing itself sometimes shows itself after another illness or trauma. Probably because the immune system isn't at its fullest.
I have read that people with endocarditis, it usually surfaces after surgery, dental procedures, or from a previous condition. So, other things are like that also.
Maybe whatever I have surfaced after my surgery. Before that I stayed outside a lot. I don't go out as much as I did before. And when I do go out I don't go out in the woods and stuff.
I really haven't been myself. Normally I wouldn't stay at home ever. But, now I stay in all the time. When I go out, I usually start feeling bad so...I don't go out much.
When I start having fun anytime, I usually start feeling bad as well. So, I know something isn't right.
Well, thanks for everything. It means a lot. God bless. Christi
Posted by wilsongal22 (Member # 11210) on :
I am on WildCondor's Lyme Links and I have read over the master symptoms list for chronic fatigue syndrome (CFS), fibromyalgia syndrome (FMS), chronic myofascial pain (CMP) and chronic Lyme disease.
I have a lot of the symptoms. I thought I would post them for more detail. Here is a list of the symptoms I have off of this 'master list'
AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE: *Allergies (nasal, other; new, increased or worsening) *Canker sores (frequent) *Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), *chills *Low body temperature (below 97.5) *Night sweats (not related to menopause or fever) *Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature and body temperature; low body temperature (below 97.6 F / 36.4 C)
Cardiopulmonary/Respiratory/Circulatory *cough *Sighing, frequent, not related to mental/emotional state
CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC *Headaches (frequent, severe, recurring) *Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV) *Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen) *Muscle twitching *Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities *Tinnitus (ringing/noises in one or both ears)
Digestive/Hepatic * Stomach ache, cramps
EYES/VISION * Blurred vision(only sometimes)
HEAD/NECK/MOUTH *Canker sores *Dry chronic cough *Runny nose in absence of cold, allergies
Musculoskeletal *Arthritic pain that migrates from joint to joint *Carpal tunnel syndrome *Joint aches (arthralgia) *Joint pain, without redness or swelling *Muscle aches (myalgia) *Muscle pain, stiffness, weakness *Stiff neck *Writing causes pain in hand, arm shoulder
PAIN SYMPTOMS (I have all of these) *Abdominal pain *Chest pain *Generalized pain *Joint Pain *Pain that migrates from joint to joint *Pain/stiffness at C1-C2 (top two vertebrae) *Shooting or stabbing pains *Painful tender points (FMS: 11 out of 18 tender points)
PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS *Abrupt/Unpredictable mood swings *Decreased self-esteem *Depression or depressed mood *Feeling helpless and/or hopeless *Feeling worthless *Frequent crying for no reason *Helpless/Hopeless feelings *Inability to enjoy previously enjoyed activities *Irritability; over-reaction *Personality changes (labile, irritable, anxious, confused, forgetful *Rage attacks; anger outbursts for little or no reason
SLEEP SYMPTOMS *Altered sleep/wake patterns (alert/energetic late at night, sleepy during day) *Difficulty falling asleep *Difficulty staying asleep (frequent and/or prolonged awakenings) *Unrefreshing/Non-restorative sleep
UROGENITAL/REPRODUCTIVE *Other symptoms worsen before start of menstruation *Worsening of PMS
OTHER *Activity level reduced to less than 50% of pre-onset level *Changed voice *Handwriting changes, altering signature and/or other writing *Hoarseness *Sore throat *Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
Well, that is an entire list. Broken down! Well, according to the list I have a big chance of having one of those. I don't think I have CFS or CMP. So, that leaves FMS and LD. Well, that narrows it down some! Not really...there are still so many possibilities.
So... I don't know what to say now. Thanks so much. Thanks for bringing Lyme to my attention. You guys have opened my eyes to more possibilities and have encouraged me to do more for myself.
For that, I thank everyone on here who has helped me! Its mean so much to me that I am not the only one who cares about myself and does not think I am crazy! Thanks! God bless. Christi! Posted by Truthfinder (Member # 8512) on :
Christi, I just sent you a Private Message.
Tracy
Posted by wilsongal22 (Member # 11210) on :
Thank you so much. I have not been able to find a LLMD anywhere in Alabama! That is defiantly a start! Thanks so much. God bless. Christi
Posted by wilsongal22 (Member # 11210) on :
Hey, I just back home from physical therapy. It went well. I had to do the exercises longer and added 2 new ones.
The weird thing is that while I was doing my exercises I started having this tingling sensation on the side on my knee. It kind of felt like the sensation I get from the electrodes they put on after I do the exercises. I am still having the tingling though.
It is not constant, but comes and goes every couple of seconds and only last a couple of seconds.
Could it be related to the exercises or could it be another symptom to add to my list?
Also, about the numbness in my lower leg while sitting criss cross, it is not just while sitting that way. It happens anytime I put my up. Like if I sit with my legs just plainly crossed. Or anything like that.
I am starting to worry that whatever it is is getting progressively worse faster. I have been experiencing more symptoms(what I believe to be symptoms)lately. I don't know if it is just that I am parinoid about the whole thing or not.
But, I am starting to go threw new things more often than before.
Well, I guess that is all I have to say for now. Thanks. God bless. Christi
Posted by wilsongal22 (Member # 11210) on :
Hey.
I have been feeling more tired lately. It is 8:30 P.M. here and I have been dozing since about 7. I usually go threw this phase. Sometimes I stay up really late because I am so awake and active.
Then, I get up early. But then sometimes I go threw the phase were I wake up more tired than when I went to bed. I stay tired all day and when I get home from school at 4 I am so tired I will go to bed then.
I usually go threw these phases a few months or less at a time. It is horrible though because I started going threw the sleepy stage a few days ago.
It is hard with school. I have work I need to get done, but I am to tired to do it. And then I get up really early and it is so awful.
Does anyone know a way to get out of these phases and just sleep in a normal pattern?
It bothers me so bad because I stay sleepy all the time and it starts to annoy after so long. I never do anything during this phase because I am so tired and just go to sleep and stay in bed a lot.
Thanks. Please help! God bless. Christi
Posted by wilsongal22 (Member # 11210) on :
Well, today has been really tiring. We are having graduation exams this week and they are draining my sponge. I have been more tired than usual.
Also, I am still having sleep disturbances. I keep waking up and I can't go back to sleep. And I stay tired.
Also, my knee is still hurting really bad. I am more sore now because of the physical therapy exercises I have been doing. And I have been taking 2 Aleve in the morning when I wake up and at night sometimes before I go to bed.
Of course, it has NOT helped. I go to the orthopedist Monday. And I have therapy again Friday. I think that is the last time. Boo...I like going to therapy! I think it could help some if I could keep going.
I am trying to strengthen my leg muscles to take some pressure of my knee and I think it oculd help if I kept going longer.
Well, that's the update for today. Please giving your opinions...there is only a CHANCE I could have lyme. What else could I have?
Thanks for the responses! They mean a lot. Thanks so much. God bless. Christi
Posted by Truthfinder (Member # 8512) on :
Christi, have you ever been checked for an active Epstein-Barr virus infection or mononucleosis?
Many of us have EBV as a co-infection. EBV is the same virus responsible for mono, and your fatigue and disturbed sleep could be a symptom of EBV/mono.
There are some shcools of thought that attribute a lot of joint problems to EBV, as well.
I think just about any lab or doc can run a decent test for EBV/mono, but if I'm wrong, somebody here will have to correct me on this. And I don't think the test is very expensive.
It certainly might be worth looking into, although since it is a virus, your doc will probably tell you that "it will get better in about a year". That's what they told me. And the fatigue did get better, but not all my other symptoms. I'm sure that Lyme was a player back then, but I didn't realize that until years later.
Maybe someone else will add their input here.
Tracy
Posted by wilsongal22 (Member # 11210) on :
Yes, I have been checked for mono before. I went to the doctor once because I was having headaches and I had been tired a lot and thats what they thought is was, but I was negative.
She told me it was just stress. That was at the begining of everything I think. And I have been checked several times since then.
Thanks though. I haven't really thought of something like that. I don't know about the EBV thing.
Thanks for your opinion. It means a lot. And no one has told me that yet!
Thanks so much. God bless. Christi
Posted by Boomerang (Member # 7979) on :
So what do your parents say now? You've gone through a lot with doctors, but don't mention your folks much.
Posted by wilsongal22 (Member # 11210) on :
Well, thanks for bringing that up. My parents took to me to wherever I needed to go, but they were as stumped as the doctors were. The doctors said there was nothing wrong. So, my parents believed them.
I guess they probably knew something was obviously not right, but the doctors couldn't find nothing.
I don't think my mom realizes that there is something wrong and it is something to worry about. My dad was kind of the same.
I started getting on wrongdiagnosis.com about 2 weeks ago and told my story. I got a lot of replies with different things. One day my dad knocked on the door(because I keep it locked, not for anything bad, just a habit) and he said I know abouyt your little website thing.
He had read my story on my computer. All he said was that people said some interesting things. And he asks me stuff sometimes about it, but thats about it.
I have been mentioning everything to my mom and I think she knows something is wrong and she is starting to wonder. Because I have mentioned Lyme, Fibromyalgia, Hypothyroidism, and Endocarditis. And I think that kind of scares her.
So, I think they are coming around the more they learn about me.
I have changed a lot since all this started. I used to be very active, outgoing, crazy, athletic, and talkative. Now I had to quit all my sports, I don't have the fun personality I used to, and I stay to myself a lot.
I hate being in groups, crowds, anywhere that people are. I don't like to talk much. I usually dont and people are like 'I could never not talk' and I just think well 'I thought that at one time to.'
I just don't have the urge to talk. I don't care to mention stuff or speak up. I hate being in crowds because I feel like everyone is noticing me and staring or something. Just a feeling I don't like.
I can't stand being in a room with a lot of people. I hate being in the middle of a group of people I have to be on the outside. Which is one of the reasons I hate school so much.
There are to many people and I don't like that. I have been trying to get my parents to let me be homeschooled for about year 1/2 now. That way I can do my work on the computer.
I don't care to sit in my room 24/7 by myself not talking. I can get my work done faster and have time to do stuff.
I know that is weird, but I didn't used to be that way. I used to be very out there and crazy and funny and I was just want I wish I were still now.
Well, for today, I have noticed here lately more cold-sensitivity, my cough now hurts my side really bad. And I have been just really weird lately. Like I know in the back of my mind that something is wrong and I am not doing anything about it.
I have just been having this strange feeling like something big is going to happen and it is going to bring everything out in open. So, everytime I get a pain or something I am so scared that it is going to turn into something and it is going to be bad.
I mean, eventually something bad is going to have to happen. Unless I do something about it. I know sooner or later that whatever it is is going to have to get worse. It is going to progress. But, I wish I could do something first. I am afraid that when it does happen it will be to late or something.
It will be harder to get over. I just don't know. The other side of me wants something big to happen to remind everyone that something is really wrong. That way someone might actually believe me.
Well, thanks for the replies and keep them coming. They mean a lot. I need all the help I can get. Thanks so much.
Well, if you have anymore questions let me know.
Posted by wilsongal22 (Member # 11210) on :
Well, today has been very tiring. We have had graduation exams everyday this week and I am drained. I felt ok til I had to go to therapy then I felt really sick.
I was out-of-it so to speak. I felt weird, dizzy-like. I was really quiet and when I walked in the lady greeted me, but I have been hoarse so when I tried to talk I couldn't.
She asked me if I was having a bad day and I said 'No, I am just tired from school.'
I went on to do my exercises and I was very quiet. The same lady came back there and wthey were all talking. She came to me and asked if I were ok because my cheeks were really red.
While on the stepping machine I felt like I was going to faint. I couldn't keep going so I didn't get very far. I was really tired and felt really bad. I started getting a headache.
I am very quiet all the time for some reason. I am normally not like that. But, while there I didn't say anything. They probably think I am really weird or something, but honestly, I just didn't want to open my mouth because it felt like I couldn't.
Has anyone else experienced not wanting to talk? Just like not caring to say anything?
I usually don't even listen to people talk. I am like in my own world. I think about stuff constantly and never pay attention to anything else going on.
I find that weird. Compared to what I used to be.
Also, the other night I was at my computer and my 'left' leg went totally numb and I couldn't stand up at all I would stumble and fall over. It is such a weird feeling to not be able to stand and feel the floor.
Well, thanks.
Posted by wilsongal22 (Member # 11210) on :
Ok, hey, today wasn't very good. I went to bed last night about 10:30 or so and I was so tired. I didn't wake up until 1:30 when the phone rang.
I was to tired to get up. I just kept rolling over trying to go back to sleep. I would doze off and on until about 2 something.
I couldn't sleep because of the tv being to loud. I almost didn't get up. I felt to tired to get out of bed. I didn't even want to move.
I am still coughing, my side hurts when I do. It has gotten a little worse. I have been having allergies. My nose is running for no reason. And I have been wanting to go back to bed since I woke up.
I have had a little headache on and off since I woke up. I have been feeling a little sick or something. Kind of irritable. I am really tired for some reason.
How come my numbness only happens like when I sit criss cross or with my legs crossed?
Anyone else have lyme that has numbness? What is it like and when does it come on?
Well, right now I am sitting on a foot stool and my feet are tingling. That has never happened before. They aren't even crossed.
They only go numb or tingly when I am sitting down. That is weird.
Sometimes I have numbness in my hands and I don't cross them or nothing! It just happens.
This morning something really bad happened. I was cleaning my shoes with my right hand and when I stopped I got this very bad muscle cramp like pain in my shoulder. It was horrible. It hurt so bad.
It is at the top of my shoulder a little toward my back. It hasn't hurt as much since then, but it hurts a little when I press on it. I held on to it when it did that and I almost cried.
It was very very painful. I haven't ever experienced something like that. Not that I can remember.
BTW, that was a really good episode of Mystery E.R. that is one of my fave shows and I never miss it. I didn't know it was going to have a lyme story on it.
When it showed her and was telling her story I started thinking about lyme. That is very sad that she suffered for 10 years. Doctors should be better than that.
I thought it was really good though because it mentioned the co-infections and everything.
Thanks.
Posted by lymemomtooo (Member # 5396) on :
Christi, I am not a Dr so do not take anything I say as such.
Lyme and other such bacteria are considered neuro toxins. All neuro toxins do pretty much the same thing to the body. Even break down of meds can become toxic.
Some are heavy metal exposures such as mercury, lead, aluminum, etc. Some may be pesticides. Or illegal substances probably also make the list. But one we deal with at our house daily is Mold. It is very toxic to many. My daughter also has the genetic factors that mkke her more susceptible to it and other diseases.
Most people are not aware of Mold being a problem because current DRs are versed in it even less than they are in most Tick Borne Diseases.
Make sure you do not have any leaks in the house and make sure that someone is doing something about the humidity. In Alabama, I am assuming it is a constant problem.
There should be many posts in the archives on Mold and Neuro toxins. You could also search Gigi's info, it may be useful in regard to neuro toxins and also check out the web site of chronicneurotoxins.com
To be honest, many may not be posting because you seem wiser than your years and there have been many "trolls" on here trying to dig up info to perhaps use against some of the LL docs.
There used to be a poster, Kara, she was from Alabama. She may have some posts in the archives that may be Alabama specific. She often hung out in Off topic so that won't help much. It was often with conflicts and not too Lyme specific.
I think she either gave up from some of the arguing that sometimes happens or she was displaced from Katrina and never back on. We have missed her.
Understand that most Drs do not have as much knowledge about this as you do and they have been fed questionable info on how to test, treat or cure it. Parents often do not question Drs, I didn't for a long time but when the suicide attempts continued, I had to become a mother panther.
Good luck.lymemomtooo
Posted by wilsongal22 (Member # 11210) on :
I see what you are saying. I never thought of mold or neurotoxins, thanks.
That's crazy! That people would not post just because I seem 'smart.' That is such a shock. I just want people's opinions. I mean I never thought of mold or neurotoxins or heavy medals.
People on here have informed me on that. Not to be 'a show off' or nothing, but I have been told that I am very intelligent. But, people should not fear that.
I just look up stuff. And read a lot. I like medicine and I want to be a doctor. That is what I am interested in so whatever I read sticks very firmly. I am sorry I seem to smart to be 15. But, that should not stop people from helping me.
I like to be knowledgeable and know what I am talking about.
I am just wandering, but what comments make me seem 'to smart for my age?'
If my 'smartness' bothers anyone I can try not harder not to be, but I didn't think that would be a problem.
I have a hard time showing people I am smart because I (used to be) crayz and fun to be around. Now I walk into class and I am silent. I make really good grades and listen. I never get into trouble and if I did I would cry for forever.
People don't know me for me...they know me as the smart girl they want to sit by so they can cheat off me.
I am like known as the 'sponge.' Because I can listen to something someone says and I could repeat it word for word. I soak in info like it is nothing.
That's how I make good grades and learn. I never talk because I just don't feel the need to. So, I have a lot of time to listen. When I do, I soak in everything.
I am so sorry that people feel they can't post just because I 'seem to smart for my age'. I take everyone's opinions and run with them.
They mean a lot to me and help me learn more.
I am truly sorry that some people feel this way and I appreciate someone being honest with me.
But, anyways, thanks for the advice and I will be sure to look into that. Thanks so much for all the replies I HAVE gotten. And if you think you have something to tell me, TELL ME!! I want to hear anything and everything.
Thanks so much. I really appreciate. It means the world to me!
Posted by nancyb (Member # 10154) on :
Hi Christi
I just wanted to add something to lymemomtooo's post about neurotoxins and mold.
Lymemom also brought up pesticides and I remember you saying that you worked with your father cutting grass and I'm sure you have been exposed to a lot of pesticides while doing this work.
Pesticides are dangerous for everyone but especially for children and young people.
If you do some reading on the internet you can learn more about exposure to pesticides and herbicides.
Just something else to keep in mind while searching for your health.
Posted by lymemomtooo (Member # 5396) on :
Christi, you misunderstood some of my post, sorry. I think it is fine that you are so intelligent..
It is just that some may think you are not who you say you are 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, just in case.
Some of our drs have recently been attacked and taken to trial and potentially could loose their licenses. So the only thing I meant is that some on the board might not trust you to be a teen. I only speculate because you wondered early on why you were not getting many responses.
I am not saying you are anything other than a sick but very intelligent 15 year old .I hope you continue to research and perhaps someday you can help others with these hellish diseases.lmt
Posted by wilsongal22 (Member # 11210) on :
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!
THANKS!
[ 11. March 2007, 11:01 PM: Message edited by: wilsongal22 ]
Posted by wilsongal22 (Member # 11210) on :
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!
Posted by lymemomtooo (Member # 5396) on :
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.
Posted by nancyb (Member # 10154) on :
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. Posted by lymemomtooo (Member # 5396) on :
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
Posted by nancyb (Member # 10154) on :
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!)
Posted by wilsongal22 (Member # 11210) on :
Ok, thanks, I understand that now.
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!
Posted by wilsongal22 (Member # 11210) on :
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!!
Posted by lymemomtooo (Member # 5396) on :
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.
Posted by wilsongal22 (Member # 11210) on :
Thanks very much.
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!
Posted by Boomerang (Member # 7979) on :
Sure seems strange to me......I dunno.
[ 21. March 2007, 09:43 PM: Message edited by: Boomerang ]
Posted by nancyb (Member # 10154) on :
I thought I should post the thread where I met Christi on wrongdiagnosis.com
After you read this, I'm sure you will find it highly doubtful that she is a reporter.
While you are on that forum, just take a look to see how many people are suffering from Lyme and they don't know it.
I can't read those posts anymore - they make me so angry that Lyme denial is causing so much suffering.
Posted by Ruth Ruth (Member # 11059) on :
Hey Christi, there are some more replies for you on the "hair loss" conversation. Hang in there girl!
Posted by Truthfinder (Member # 8512) on :
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
Posted by karatelady (Member # 7854) on :
Christi,
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.
Don't give up.
Sandy
Posted by paulamea (Member # 11365) on :
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
Posted by paulamea (Member # 11365) on :
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.
Posted by clairenotes (Member # 10392) on :
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
Posted by wilsongal22 (Member # 11210) on :
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!!!
Posted by nancyb (Member # 10154) on :
You are going to be ok Christi. You have what it takes to make things happen.
I do hope you can pursue your dream of being in medicine. You will make a wonderful LLMD.
And as far as the comments made by boomerang, I do hope s/he comes along to apologize. The message was hurtful and completely out of line.
Keep learning everything you can as your knowledge will be your power. Don't ever underestimate yourself, kiddo.
Posted by wilsongal22 (Member # 11210) on :
Thanks! That is very encouraging!
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!!
Posted by wilsongal22 (Member # 11210) on :
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!
Posted by kelmo (Member # 8797) on :
I don't know how you possibly get up for school. My daughter had all those symptoms and couldn't get out of bed.
Posted by paulamea (Member # 11365) on :
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.
Posted by paulamea (Member # 11365) on :
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.
Posted by bettyg (Member # 6147) on :
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. Posted by nancyb (Member # 10154) on :
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.
Posted by Michelle M (Member # 7200) on :
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
Posted by paulamea (Member # 11365) on :
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.
Posted by bettyg (Member # 6147) on :
nancy, i stand by my comments as they were typed. it's my observation; nothing more; nothing less ok. END of subject. Posted by wilsongal22 (Member # 11210) on :
WARNING: VERY LONG!!
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!!
Posted by wilsongal22 (Member # 11210) on :
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!
Posted by wilsongal22 (Member # 11210) on :
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!
Posted by Michelle M (Member # 7200) on :
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
Posted by wilsongal22 (Member # 11210) on :
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!
Posted by Ruth Ruth (Member # 11059) on :
Dear Christi,
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!
Posted by wilsongal22 (Member # 11210) on :
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
Posted by paulamea (Member # 11365) on :
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.
Posted by paulamea (Member # 11365) on :
just found this site, very interesting..
Posted by wilsongal22 (Member # 11210) on :
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!
Posted by wilsongal22 (Member # 11210) on :
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!
Posted by kelmo (Member # 8797) on :
Well, you are having and MRI. They must believe something of what you say.
Posted by wilsongal22 (Member # 11210) on :
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!
Posted by paulamea (Member # 11365) on :
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....
Posted by paulamea (Member # 11365) on :
""""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...
Posted by wilsongal22 (Member # 11210) on :
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!!
Posted by Geneal (Member # 10375) on :
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
Posted by wilsongal22 (Member # 11210) on :
Thank you very much.
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!
Posted by Geneal (Member # 10375) on :
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
Posted by wilsongal22 (Member # 11210) on :
Thanks. Yes, I know that the tests can be false-positives. Also, that a diagnosis of lyme is part clinical. Unfortunately. I wish there was an accurate test. As many people do.
Well, thanks so much! See ya!
Posted by Ruth Ruth (Member # 11059) on :
Hey I am so sure you meant "false negatives" not "false positives"... but it's good to make sure you are telling your parents the right thing.
The test can show "Negative" (= don't have Lyme) when in reality, you are "Positive" (= have Lyme).
When that happens it is called a false negative. When that happens an uninformed doctor will tell you that you don't have Lyme because he/she doesn't understand that you can have it and still have a "negative" test result.
Some tests are really horrible and will show the person does not have Lyme most of the time.
So, I pretty sure you understood all that, but you said it backwards in two posts.
I'm sorry you are having so many struggles right now, but I know you will come through.
Posted by Geneal (Member # 10375) on :
Christi,
There is no "part" clinical. It is a clinical diagnosis.
Admittedly a positive WB for Lyme carries a lot of weight, but it is a dx. based on symptoms.
In my case I had already been tested for Lupus, Rheumatoid Arthritis, parvo virus, malaria, etc.
Didn't take a genius to figure out. I had 54 symptoms of the 80 listed on the CanLyme site.
And the list was growing daily without treatment.
Basically, when I googled my symptoms, two options came up consistently: Lyme or Lupus.
I knew it wasn't Lupus. My biggest problem (prior to finding this site) was getting a MD to draw a WB for it.
Finally found one at a walk in clinic (following visits to Internist, Pulmonologist, Cardiologist, etc).
Lucky enough to have Igm band 23 show up as positive on a WB via Quest labs.
I wish I had found this site earlier, but God led me to it and to all of the wonderful information and people on it.
I am still humbled daily by the people here and am so grateful to have others to support me and that I can support as well, that have actually gone several miles in my shoes.
My husband had a positive Elisa. My LLMD said that it was HIGHLY unlikely for that test to be a false positive.
I am sure there is such a thing, but I would seriously doubt it given my diagnosis, my neighbors, and probably many others in my area who are walking around not diagnosed.
Or Mis-diagnosed.
This is why you need to find a Lyme Literate doctor.
The MD who initially dx. me put me on doxy 200mg a day.
When I asked her how many Lyme patients she had treated the response was that I was the third.
Uh,......I don't think so. Found this site, found an incredible LLMD thanks to Tutu and the rest they say is history.
I spent months trying to get someone to figure out what was wrong with me.
I have two small children. I was so afraid that I was going to die in my sleep and my babies would find me like that in the morning.
Wasted time, wasted energy and months of agonizing pain and illness and mental torment, due to MD's trying to tell me it was all in my head.
Follow the path (as best as you can) that you have been shown.
You are so blessed to have the knowledge that you have been given by others here.
Hopefully, this can lead you to a dx (whether it is Lyme or not) and down the road to recovery.
Hugs,
Geneal
Posted by wilsongal22 (Member # 11210) on :
Thanks.
Yes, I did mean false-negative. I'm sorry. I think I said it right that time?...hmm...I get confused.
Either way, I know what I am talking about and I am sure most of you do to. I just a little confused on that part!
Luckily, I have been feeling a little better. For the most part. My depression isn't as bad. I have been sleeping a little better. The muscle pain in my left leg has almost went away.
It only hurts if I like stand on my tippy toes or something. It doesn't hurt to walk on anymore really. I haven't felt as 'sick' as before.
My only complaint right now is that I have been having headaches everyday for the past couple of days. And my right knee still hurts.
Unfortunately, I have felt 'better' many times before, but it ALWAYS comes back. I think telling my dad what I thought made a little difference. I feel like I am on a better path now. So to speak.
Plus, everyone here makes me feel better. Because so many people care, and know what I am going threw, and want to help. That makes me feel better also.
I enjoy getting on here everyday and seeing the replies people have sent me. And when I saw 100 replies that made me feel good. Even though half of them are mine! Still!
Also, the clinical thing, I realize it is a clinical diagnosis, and that a positive lyme test helps. I just didn't put that into the words I meant. Sorry.
But, you are right, it is a clinical diagnosis. A pos. test just helps.
Well, thanks to everyone on here, see ya!
Posted by wilsongal22 (Member # 11210) on :
Hello, I went to the orthopedic doc today. And he looked at my MRI images.
He concludes that my constant knee pain is due to a bruise on the bone. He said they are hard to heal. So, I am krutch-ridden for at least 2 weeks.
Also, I had my ASO re-checked to see if it is still high. Because if it is, it has been for 2 years. If it is still high he said I will probably be going to a pediatric rheumatologist at UAB in Birmingham.
I told my mom that if we go to Birmingham I wanted to see about meeting Paula there to talk. I told her she could help me get in with a LLMD.
She didn't really say much. I explained more about Lyme. And that people can have it over time and it affect them in different ways.
I said to her, "Well, when ya'll get tired of traveling the state and not getting an answer, then we are going to the LLMD."
I told her that Paula was willing to help out, and help with the appointment, and come with us. I told her if we go to B-ham, I want to see about meeting her and talking to her over lunch or something.
Maybe to see if we relate and see what she thinks in person.
My mom didn't really respond. I try to tell her stuff a little at a time so that I don't overwhelm her. But, over the past week I have come out on what I think.
I told her that that going to the LLMD was the way I wanted to go and if we go to everyone else then that is the only thing left.
So, hopefully, now she knows and she can think about it more. Then, hopefully, my parents will decided that it can't hurt and we can get my stuff together and send it to the LLMD and see if he thinks he can help me.
If so, then they will defiantly take me down there! I wish this wouldn't take so long, but I have waited this long so....maybe we are finally going in the right direction. I hope!
Well, thanks so much! See Ya!
Posted by paulamea (Member # 11365) on :
Hi Christi, glad you got a recommendation from your Ortho. Sounds like he has found a cause for your knee pain so you should follow his advise and see if it gets better.
I am still offering my help when you and your family are ready to see a LLMD and Spring is the best time to visit Mobile. I've visited Bellingrath Gardens which is right below Mobile while we were there. It's just a beautiful place when the azaelas and roses are blooming.
I still would like for you to print all of these posts and let your parents read them. Also personal stories (i have posted just a few links but you can find many more on line) are very compelling. Find some that relate to you and let your parents read them too. Remember to keep a concise diary including your morning and evening temperatures, symptoms, sleep habits, etc. This is very helpful. Also include you personal and medical history time-line briefly. This will help when you start to request your medical records if necessary.
Well have a great week at school. p.s. Spring break week or an appointment after school is out would help with not missing any school.
Posted by paulamea (Member # 11365) on :
Hi HSHBMOM, just wondering how your daughter is doing? Where do you post at regularly? would like to follow your story...
Posted by wilsongal22 (Member # 11210) on :
WARNING: LONG...SORRY....
Hey, well, actually he came in and got the MRI images and went back out. He said he was going to read them. He left the door open and he was asking the other doctor what he thought.
He was like, "I have a little girl here and I can't find a conclusion. Will you meet her and see what you think?"
Then, he went on about how I was the youngest person he had ever doen a deep plantar fascitis on.(surgery on my the heel of my foot). I am in his records for that!
He told the other guy he didn't know what else to do. They talked about the MRI and he said that it looked like I had "bruised the bone of my knee" or something. I don't know how you bruise a bone, but that is what he said.
I also had the ASO repeated. I had it at a different place this time so I don't know when I will get the results.
I am hoping it will still be high. We are going to Birmingham if it is. Hopefully, I can get in with the LLMD of Paula's. Maybe if we go to B-ham I can meet her and see what she thinks.
Then, we can go to Mobile if she thinks I should. Which I know she already thinks that, but stuff is different in person. We can really talk about it in more detail.
I had joint pain before and they found I had a stress fracture in my foot and then I ended up having surgery on it. But, I still had the joint pain.
My point is, even though he is saying I bruised my bone I will still have the other joint pain.
Maybe if they go my way then we can go wherever they want to as long as we go to the LLMD in the process!
But, hopefully, we can go to Mobile and we can go to the Gardens Paula is talking about. That sounds like it would be nice. I have never even heard of that til now. But, the way she explained it sounds like a beautiful place to go.
Usually, I go to the mall or something when we go out of town! That's my favorite thing to do!
But, anyways, he has run out of stuff to say, so maybe they will listen to me now! That's what I am hoping for anyways.
Well, thanks Paula so much. Hopefully we can go your direction real soon. I would love to get to me someone with Lyme to talk to.
Well, thanks a lot to everyone else as well! Everyone has been extremely helpful! Obviously, my journey has just began or is about to. And it means a lot that I have all of you on here to turn to with my problems.
Oh yea..I am so forgetful. The sleep disturbance thing...It took me about 2 hours to go to sleep last night. Normally I am very cold sensitive. I wear my jacket when it is 80 degrees out. And I have 4 fleece-like blankets folded in half on my bed! And I have one comforter under my sheet that is folded in half!
But, last night...Oh my goodness...I thought I was having a hot flash or something! And I am to young for that!!! I was burning up! I had to throw all the covers off. And I turned the ceiling fan on high.
Normally, that freezes me, but I was still hot. Nothing I did helped. And today I have been burning up. In first period I was sweating and my face was red and it felt like I had a fever.
I also didn't feel so good. I felt sick to my stomach. I have been sweating all day. I don't know why either. It is really weird that I am normally really hot and now I am cold.
But anyways, I am probably forgetting something again.Oh yea memory. I am seeing changes in that as well. With school mostly. I usually understand stuff straight up. It is starting to take longer for stuff to click.
That makes me angry because I don't usually do that. I feel like I get it, but something is in the way of it going all the way in my brain! I don't know. Really weird.
Well, thanks alot. And I am sorry this is so long. I guess I have a lot to say. This is like my everyday diary that I write in so..I guess it will be long. Thanks! See Ya!
Posted by Ruth Ruth (Member # 11059) on :
You are such an inspiration Christi!
It can really set you back when you feel like your mind is slipping, but just remember, when you get treated (I've been told) it gets better.
A small comment from my experience... when I added the Krill Oil to my supplements for Omega-3s my mental stuff really improved. I read a book where a doctor explained how must people are deficient in the Omega-3s and how you need it for your brain, skin, heart, etc. It might be worth a try.
Grace to you and all those you love.
Posted by wilsongal22 (Member # 11210) on :
Inspiration? Hmmm.... I have never been told that before. Thanks.
Well, I haven't been able to get on because of this virus thing, but I am now so...
I think I told about what happened Monday at the doc. He said to stay on krutches for 2 weeks...well after school yesterday I ditched them.
I know that sounds bad, but they were causing more pain than I could handle. I sprained my wrist(or so the doc said) when I fell snowboarding and I told about when I did a double front flip on the tramp and over-rotated? Well, I hit the bar with my right wrist and ribs so...
Anyways, the krutches were killing my arm muscles and my side on my ribs. I could barely lift my arms and today I have been so incredibly sore.
My arms are killing me and my shoulders hurt really bad. My back has also been bothering me. The muscles in my arms hurt when I move my arm or touch them.
My neck has also been giving me some trouble. The way I see it is that if everything is going to hurt I would rather it come and go like usual than me actually make it hurt using krutches. I would rather my knee just keep hurting.
One thing is better than my whole body. I have been feeling real run down and tired lately. Plus, I am having several headaches a day. Some are in different spots of my head like to either side or all the way across.
I have been mentioning a cough I have had for 4 weeks now, my brother got sick with sinus and went to the doctor and my mom got me some cough med. I am taking Pseudo Max...big chalky pills....
They make me really tired. It says may cause drowsiness and dizziness. Those affect me!
Also, last night was bad. Like the night before when I was burning up and really tired. Last night my dad got mad because I said I wasn't using the krutches. He said,"Well, it isn't even worth going back then."
I said,"Well, if you knew how my arms felt and how I felt you would agree with me. If any of ya'll knew how I felt you would agree."
I almost cried. Because he can't understand what I am going threw and just how bad it is. When I showed him my symptoms list he said, "Well anyone can have these symptoms."
Well, yea they can, but not everyone of them as bad as I have them. He doesn't understand that it isn't just regular depression or regular joint pain or whatever. It is much worse than regular.
Last night I was talking with my mom about something (can't remember) and I walked out and went to my room. I felt horrible. I was so out of it. I just broke down into tears and got a roll of toilet paper and laid in my bed crying. (I am used to it by now that I keep toilet paper by my bed!) I don't know why. I just didn't feel good. It was just the horrible feeling I had for some reason.
I was feeling really down and I was really tired. And it wasn't even late. I was so sore I hated to even move. After laying for a while it hurt even more to move. I fell asleep with my toilet paper in my hand.
This morning when I woke up, I was REALLY sore. I started not to go to school because I hated to even move. I have been more irritable lately. And depressed, and just plain hurting. Just not feeling so good.
I get a headache and then I feel really sick. And I don't like it. I have been kind of down and out away from everyone. I curled up in my seat on the bus today with my music and went to sleep.
I also get anry when people speak to me. I don't know why.
ALSO, I keep seeing where Lymies want people to break up their paragraphs. What kind of effect is that having on people with Lyme? I mean why is it important to break stuff up?
I am just wandering because we are reading a book for English right now, and the paragraphs are so long without spaces. I have a very hard time readin it because it all blends together sort of and I can't focus on the one point I am trying to read.
By the time I get done reading it, I forget what I read because I am focusing on getting threw and the words are just not registering in my brain. Is this something that happens to people with Lyme?
Well, I think that is everything. I had something else to say, but I forgot. Perhaps if I remember I will post it.
Well, thanks so much. I really appreciate all of the support. Thanks to everyone!
Posted by Ruth Ruth (Member # 11059) on :
Hey Christi,
You are doing a great job explaining what you are going through.
And I like it that you break up the paragraphs.
As I understand it, when you have the infection in your brain the inflammation can give you the feelings you are having. I experience them worse some days more than others.
It helps on the bad days to remember that there are good days too.
I am so sorry that you are still feeling that no one in your family understands. I am hoping that you will be able to see that there is someone, somewhere that you can talk about things with and feel accepted just the way you are.
Hang on to your hope!
Posted by wilsongal22 (Member # 11210) on :
Thank you very much. I try to explain myself in details so that people can better understand me and how I see everything.
I know there are people out there that understand, just not here, in person. I do have good days and bad. I often have more bad days though. I try to take advantage of the good ones as well.
I haven't had many of the neurological symptoms, but I am starting to notice more of them now. I get confused sometimes just on simple stuff. I forget stuff. I also have been forgetting how to spell words that we learned in like 2nd grade!
Also, I mentioned I am having to read a book for English, I just got done reading some of it and it is harder than usual. I hate to read. I have never liked it.
The writing is small, and it is bunched together. The paragraphs take the entire page so it looks like it is all blended together and it is hard for me to focus on it.
I also forget what I am reading. And I have to read it out loud to myself otherwise I like...can't understand it. It is a weird feeling. Plus, I find myself not being able to read as good as I used to.
I see words I have know and I repeat them over and over until I finally say it the right way, but I know how to say it to begin with it just comes out wrong. It is really weird.
And I read slower. I don't know if it is just me, but I am different than I used to be. And that bothers me.
Anyways, I was readin about bone bruises and I learned that there are 3 types of bruises, under the skin, within muscle, and in bone.(or on bone) Supposedly, the bone bruise is the most severe and painful.
It can take days to months for it to heal. It is also pretty much only seen on MRI images. Good thing I had an MRI I guess. They are also not that common.
I tried walking on my krutches a little while ago and I am so sore that I couldn't hold my self up and they were hurting my side and inside of my arms extremely bad.
So, I am going to pass on the 2 weeks on those things.
Well, I guess I am going to go to bed now. I slept for a while before, but I got woke up just to watch American Idol!
Well, thanks so much! See Ya.
Posted by Ruth Ruth (Member # 11059) on :
Yeah, it really hits me hard when I feel like I'm losing ground.
It sometimes takes me an hour to compose a post. After I write it I preview it and fix stuff I got backwards or spelled wrong or whatever.
Then I preview it again and add something. It seems like I have to preview it 5-9 times before it says what I wanted it to say to start with.
I learned a long time ago from a friend with dyslexia that it may take longer, but perseverance wins out every time.
Even staying 'positive' about yourself and your life can be a huge struggle, but very important. "The power of life and death is in the tongue." Know where that quote is from? How about this one: "A broken spirit dries up the bones." Worth a study.
About the bone bruise. I had that on my tail bone from a fall where I landed on it and yeah, it really hurt and seemed to take a long time to heal.
Posted by wilsongal22 (Member # 11210) on :
Today has been a really long day for me and I am wiped out. I will explain more tomorrow.
In the mean time, I know I am not at the age for hot flashes, but since Lyme can mess with hormones, could these 'hot spells' I have been experienceing be hot flashes?
I am usually cold sensitive. Today it was a little over 80 (F) and I still had my north face fleece jacket on and blue jeans. I am ok as long as I don't take my jacket off then I get cold. It feels chilly to me, when everyone else is in shorts and a t-shirt.
What is wrong with me???
I am so tired of getting no where. I just want something to be positive. I just want to know what it is. If it is anything. If it isn't anything, I would hate to know what it is like if it were something...
Today was a better day, but not a 'good day'. It has been a very long and stressful week. I absolutely hate school. Everyone makes it more stressful than it should be.
Luckily, no one has said anything about me being on krutches one day and not the next! That would kill me. I would stand out like two swollen thumbs. And I hate that. I like to "not" stand out!
I would rather 'blend'! Well, anyways, I am very tired, so I will explain everything tomorrow.
Thanks.
Posted by Ruth Ruth (Member # 11059) on :
Seems like every night for a couple weeks I have these "rolling waves of heat" every 10-30 minutes. Some people think it is a co-infection with Babesia. It sure is uncomfortable. I'm not sure if it is hormonal or not.
Sleep well, have a better day tomorrow.
Posted by paulamea (Member # 11365) on :
Hi everyone, hope you all have a great weekend, beautiful weather, I'm off to Lake Martin for a camping trip (well if you can call staying inside a camper on a paved road camping). I don't go near the woods. Just wanted to let you know Christi that there is light at the end of the tunnel and you can get better. You have to be persistent though, even when you're tired and confused. I hope you're working on letting your parents read these posts and more personal stories. I'm sure they want you to get better and they're doing their very best.
Well, hope everyone has a great weekend, bye for now
Posted by wilsongal22 (Member # 11210) on :
Hey, well I have a ot to talk about and I have no clue were to start. I will just start with the bad news (which could be good depending on how I look at it).
I was at my house today, when my orhto called personally! He has only done that once before when he wanted me to see a specialist for my ASO and whatnot.
Anyways, he called and he said MY ASO IS STILL HIGH!!! OVER 2 YEARS NOW! That is very bad. He said he had talked with my rheumo and they agreed I needed to go back to the ID specialist about it.
Or if we would prefer to go to someone else in Birmingham we could do that also. But he asked that I have m parents call him back Monday to talk about it more.
I was so shocked (not really) I forgot to ask how high it was. So, my mom is going to ask when she calls Monday. He seemed like he was is a good mood so I didn't mention that I was no longer using crutches!
My mom said she would tell him Monday. And I don't have to go back to him anymore (for now!)
Ok, today hasn't been very good. First, I woke up way earlier than normal and I couldn't go back to sleep so that made me feel sick.
I had to go to school...
I have been outside because it was in the 80's!! And I love the outdoors, but it just wasn't the same as it used to be. I tried to play baseball just hitting because I am not supposed to be running or walking.
That got very boring. I am still coughing. The meds are not helping me. They make my nose run and make me sleepy.
It hasn't rained and it is getting hot out. So, the pollen is kind of bad now. I usually have bad allergies, but now I am having allergies plus the scratchy eyes and everything.
It is not a good feeling. Plus, when I go outside I have the feeling bugs are on me and that feeling lasts even after I come in and nothing is even on me.
Oh yea, and about the ASO thing, I have read that one of the causes of Endocarditis is having a high ASO for more than a year. Plus, dental surgeries and things that allow infections in the body.
I have chest pain sometimes and stuff like that and when we went to the ID doc he said not to worry with it staying high. It wouldn't hurt anything. I knew he was wrong right then.
It can cause heart damage. So now I am worried about that and that he is not going to even look for that. Or even mention it to us. My parents do know because I have old them 100 times! Just to make sure they heard me!
Other than that, I think that is everything. Maybe. Well, thanks so much! I guess I am going to bed early now because I am about to fall asleep here and my eyes are way bothering me!!!
See ya! Have A Great Weekend!!!
Posted by wilsongal22 (Member # 11210) on :
Well, today has been long. It hit 90 degrees here today! I love the outdoors, but I never go out anymore. I just feel like I can't do anything when I go out.
I think of ticks and Lyme and you guys everytime I go outside. I know I shouldn't fear going out, but I can't help thinking of whether or not Ic ould have lyme and what I was doing when the tick got on me.
Since my dad is starting to go back to work now, I knew eventually I would have to go back to work. My little brother has been doing it for me because I have refused to work because I never feel good.
But, today I got up the courage and I went and did 2 little places. All I had to do was mow them and it didn't take long. I guess I am starting small.
I thought about it the whole time. It scares me because I don't know what I have and if I have Lyme. Now that I know what Lyme can do to people. I am convinced it is what I have, but sometimes I over do it. I usually make things out to be more than what they really are, so I hope I am not doing that now.
Well, other than the blanket of pollen on the ground and every outside that is bothering my sinus, it was an ok day. My whole face hurts because of my sinuses and my persisten cough makes it hurt worse.
Well, I guess I will go to bed early because I am more tired lately than usual. Thanks!
Posted by Mo (Member # 2863) on :
hi christie,
i just read over this thread, and for what it is worth, i sugest you spend your time and energy expressing your symptoms, and concerns regarding diagnosis and treatment with your parents and medical professionals. going to an LLMD for an evaluation may be in order, or you may have other things going on. clearly you have alot of things going on tho, and you are a minor and therefore in your parents care regarding medical issues and treatment.
your limited energies may be best spent attending to your health through your folks and some good doctors, who are qualified to answer your questions. members here are patients like you. we can't advise you medically, and your symptoms sound like they need some attention.
the library available here of informative articles for your family regarding Lyme disease is really quite good.
maybe some folks can suggest the top three pieces of literature to start with regarding Lyme, if that is a medical evaluation you and your family are going to be considering.
best, mo
Posted by wilsongal22 (Member # 11210) on :
Yes, thank you. I do realize that the people here are sufferers, former sufferers, or know someone who has this. Obviously they can't give me medical advice because they aren't doctors.
But, since they know what I am going threw they help me with their opinions, views, and support. I really appreciate everyone on here and I am blessed to have been told about this site.
There are many people out there who have lyme and may never realize it. Whether or not I have it I am now aware on it. I am aware of the danger and the spread of it. I can help people as well. That's all I want to do.
I promise everyone on here that someday when I do become a doctor, I will be lyme literate. I am going to help all the people out there with lyme and other misdiagnosed diseases. I want to work to change the views of everyone on lyme and all the other diseases out there people are not recognizing.
Everyone knows about cancer and stuff like that and that is great. People should be just as informed about other stuff such as Lyme. It can so easily be contracted just by simply going outside.
It isn't right that people don't recognize it. It isn't right what the insurance companies do about it either. I want to work to change that. I want it to be known.
If I do end up being diagnosed with lyme, I am going to be an advocate for my area. I am going to make sure everyone here knows I have it and what it is and everything. I am going to spread awareness! That is my goal!
I know lyme is not good to have, but if I do have it, I am going to think of it as a good thing. I am going to help educate people about it and make it known to everyone.
Well, sorry about that, I get carried away sometimes and just start spitting out everything that I am feeling at the time. Sorry.
Well, anyways, thanks a lot, and let it be known that I am praying for everyone with lyme as well as other diseases. Thanks!
Posted by wilsongal22 (Member # 11210) on :
WOW today has been big. First off, I didn't sleep well last night and I woke up early this morning which, of course, made me sick to my stomach.
Then, I had to go to school. I am not good in tight places and I had to ride the hot school bus and it was cramped. I thought I was going to die. I get sick when I am to close to a lot of people and stuff.
When I got home, I took my dog out for a walk. I usually don't go out because I am kind of scared of ticks now! I know I shouldn't be, but I took him around the yard. And all of a sudden I saw a spot on him.
I FREAKED OUT!! IT WAS A TICK CRAWLING ON HIS FUR. It had not yet attached itself. All 3 of us were afraid to touch it and I started shaking. I took a stick and flicked it off of him and took off running. (Even though I am not supposed to be) And ran all the way home.
I checked all over to make sure one hadn't got on me and I was so freaked out. I was shaking and scared. And I was running around the house babbling about how we were all going to get Lyme disease because I saw a tick!
I know I overreacted just a little, but I couldn't help it. I went to shoot basketball across the street and refused to walk threw the grass to my friends house! Then, I wouldn't go threw the grass to get the ball. I made her get it!
I was on a roll too. I played ball in 7th grade and I was really good, but I couldn't handle the running because of my knees. I was doing really good, but my arm felt like it was going to fall off right there.
And my knee was hurting really bad. I went home and laid on the couch. My mom called to talk to my ortho about my ASO test and stuff. BTW it is STILL HIGH!! It is 800!! That's what it was 7 months ago(last time it was checked). And that is the lowest it has ever been. The high was 1633.3. And he said him and my rheumy agreed that I needed to see the ID specialist again to get my ASO down.
And then go to a Pediatric Rheumy in B-ham to find out what is causing my joint pain. He said it is never normal for someone my age to have joint pain. But, it is extremely abnormal for someone my age to have joint pain for over 2 years.
The first joint pain I ever experienced was in the 7th grade when I played basketball. I don't know if it was just the practices or if that is just when it all started, but it has been 3 years since the very begining.
Anyways, I am super sore now and kind of wish I hadn't went to play. Plus, my neck and back is hurting from reading my book for English class. I just can't handle it.
Well, my ortho said my knee bruise would heal 'eventually' not to worry about the krutches. And I don't have to go back to him unless I break a bone or have something he can treat!
Well, I guess that is about it. Oh yea, loss of appetite. Does that happen to people with Lyme. I am just so sore I don't feel like moving or even speaking. My mom keeps asking me to eat supper and I 'just don't feel like it'.
Ummm.....I think that is all for today. Thanks so much! See Ya!
[ 26. March 2007, 10:19 PM: Message edited by: wilsongal22 ]
Posted by wilsongal22 (Member # 11210) on :
I forgot about the tick thing, I didn't get a close look, but I tried to remember what it looked like.
I have never like ticks before. I have also been afraid of them and I won't touch one at all. I get really scared and shake and freak out really bad.
All I remember was that it was, of course, small. It was crawling on his fur. I noticed a small white-looking spot on its back. That was the main thing. It was dark brown too. I looked at the pics and it looked kind of like one of the ones listed.
I am not sure though because I didn't see it that close. But, I do remember the white spot. That was the main thing that stuck out to me. Plus, I immediatly thought of Lyme when I freaked out.
I was so scared. Goh...it scares me to even think about it. Now, though, I know there are ticks out right now and they are in my yard. My dog was playing and biting at his collar. I don't know how a tick had time to get on him because he was jumping everywhere.
That scares me now. Even more than before. I don't know if I can walk outside now without all worrying about it.
Of course, I know not all ticks have Lyme and I have been bitten so many times before. But, if I have Lyme then one of those times was the time I got it. So, I am worried that just one more is all it takes for me to get it if I don't already have it.
I wouldn't go out the back door so I was hollering to talk to my mom. When she came in past me, I was going on about how we had ticks and I saw one and we were all going to get Lyme now(I was still freaking out about it!) and she made the comment," Well, you probably already have it anyways so..."
I think I talk about it so much now she is past the point of taking it seriously. I watched the 26 minute video with the woman with lyme who said her family didn't believe her and even after her diagnosis they still didn't believe her until they(her kids) were all diagnosed with it also.
I know how she feels. And I am sure a lot of people on here do also. Well, sorry for carrying on. I am just so shaken now that I saw that tick.
Thanks so much, and sorry it is so long...
Posted by lemonhead (Member # 6267) on :
Hey Christi, I sent you a private email, I hope that is okay. By the way, I am 50 years old, married for 29 years to a wonderful man. Lemonhead
Posted by Truthfinder (Member # 8512) on :
Gee, Christi - I hope you won't live your life in fear of ticks... if you dress properly and check yourself thoroughly when you come in from being outside, you will probably be just fine.
Now, if you hadn't panicked, you could have caught that old tick in a jar and figured out exactly what he was. There are even places that can test ticks for Bb.
Frankly, I'm a little concerned about your dog. Dogs get Lyme too, so I would say some tick prevention is maybe in order for your dog...
Also, if you notice any unexlained "migrating lameness" in your dog, that is the most obvious symptom in a dog with Lyme.
Keep your eyes open - you will be okay. Fear is no way to live, especially for a future doctor.
Tracy
Posted by Lymetoo (Member # 743) on :
Hi Christi! I haven't been following your story since I first responded to you, but have caught up now on most of it!
I just wanted to warn you to EXPECT the rheumie and the ID duck to NOT think you might have lyme!! They will do everything they can to disuade you from a Lyme diagnosis.
I sure wish you could bypass these drs and go straight to an LLMD. I wouldn't be surprised if Lyme treatment didn't "fix" that high ASO!
Posted by Geneal (Member # 10375) on :
Dear Christi,
I think it is normal to get a little freaked out over finding a tick on your dog.
I found one engorged on my dog's neck about 3 weeks ago.
I must admit that it bothered me that they are active so early, but I grabbed my tweezers and then gently removed the tick.
Prior to Lyme, I would have probably just used my fingernails and pulled it out.
I am less afraid of the ticks I do see.....it's the nymphs or the ones I can't see that bother me.
We are all more cautious about checking ourselves when we've been outside, use bug spray, but don't avoid going outside.
I second what Tutu said about probably not getting the answers you want and need from the ID doctors or the rheumie.
I would gently suggest to your parents that this 190.00 that they would spend on Igenex testing would be more valuable
than all of the appts. and money spent on gas running around.
Good Luck,
Geneal
Posted by paulamea (Member # 11365) on :
Hi Christi and Lymetoo
I totally agree with you. I took my daughter to an I.D. "specialist" at UAB and was told she couldn't have Lyme because we didn't have Lyme in Alabama. Then they suggested that I go back to the begining and seek psychiatric help for her again (pretty much said I needed it too). Seems to be a lot of tap-dancing around the issue here though.
Christi - have you had a Western Blott IGG and IGM test? If so, were any bands positive. This test can be ordered by any regular MD and should be covered by your insurance.
Do you have a regular family doctor?
Are you working on getting your medical records together?
I understand that you and your family are juggling a lot of issues right now, but the main thing is to get a definitive diagnosis ASAP. The direct approach is really pretty simple and straightforward. Get records together, make an appointment with LLMD and then go see him. This could possibly all happen for you right after school is out.
If none of the doctors you've seen have been interested enough in running these tests or referring you to a LLMD, then it seems like you're going in circles without any end in site and you aren't going to find a doctor who is going to help you along these lines.
Sorry to seem pushy again, but I've seen first-hand what waiting can do. I know your parents want you to get better and will help you any way they can. You really need an advocate and I am willing to speak with your parents if they want to talk with me.
It seems like days and days go by and you're still describing all of the same symptoms without any progress being made to help improve these symptoms. I know it's very frustrating but if it's been going on for 2 years you definitely need to have Lyme Disease either diagnosed or ruled out and the fastest and best way to do that is to see a LLMD.
Again, please talk with your parents and map out a plan to go forward instead of in circles. Sorry if I've over-stepped my bounds here, but if you were my daughter I'd be knocking down some doors here.
Posted by wilsongal22 (Member # 11210) on :
Hey, first off, thanks for the replies.
I am going to answer by person so I don't get confused. I had to go back and write down what I was going to put here because when I got here I couldn't remember what I was going to write to reply so here goes..
lemonhead- That is totally fine that you sent me a private message. If anyone has any questions you can private message me anytime you want!
Truthfinder- I was freaked out by the tick, but I don't think it is about the fear of getting bitten by it, it is more a fear that if I don't have LD already and I do get it, I don't think I can handle anymore than I already handle. If you know what I mean.
I paniced at first and saw it crawl down into the grass and then it was gone. That's when the thought to get it flashed threw my head, but it was to late and I took off. I thought about how I should have gotten it.
I could have had it tested and if it were positive I could have added that to the list of reasons why I could have LD! My dog seems fine though. I have been watching them since I found out they could get it also.
quote:Fear is no way to live, especially for a future doctor.
That made me smile! Thanks for that. When I think about becoming a doctor it makes me realize why I was put here. Thanks.
Lymetoo- I do expect them to reject the idea that I could have lyme. As a matter of fact I know they will. I just figure if I go and they can't find nothing then it is a good enough reason to go to the LLMD since that is the only option left!
Unfortunately, with the ASO being high, I can't possibly test positive for Lyme. (from what I have read)That is a good enough reason to get it down to prove it is not the reason for my symptoms. So that is my goal!
Geneal-
quote: the ones I can't see
that makes me feel a lot better, knowing there are ticks I can't see with lyme! I am just kidding!
paulamea- No, I haven't had a Western Blot. I am going to ask my parents to ask my Ortho if he would order it. He is usually good about ordering tests. I don't really have a 'regular' doctor.
We are working on getting a diagnosis though. And, no, you haven't stepped over any boundaries. that is fine. I wish my mom would knock down some doors!
Ok, about today, my dad called my ID specialist and they wouldn't him talk to the duck because it has been over 6 months since I seen him. All we wanted was to ask a few questions! They said to have my Ortho call them with a referral.
So, he is and they are going to talk. We may be going to Birmingham because my parents aren't happy with the ID duck. Which I agree!
Honestly, I don't agree with going to any of them, but the goal is to get my ASO down to normal to prove that it is NOT the cause of my 'joint pain'. And they don't realize that it can't possibly be the cause because it doesn't cause everything else I have!
But, whatever. I just have to go along with them until they run out and I step in. Which I have already partially done, of course. Because my ortho already run out of stuff to say!!
Well, I guess that is about it. I have this feeling I am forgetting something, but I can't think of it right now so, maybe later. Thanks so much for all of the replies. See Ya!
Posted by wilsongal22 (Member # 11210) on :
I mentioned something about getting a free Lyme awareness bracelet on here some time ago and today I recieved it. Of course, it is on my wrist at this very moment. And it is serving as my reminder of all the people who have Lyme. Also, as a way to get the word out.
But, anyways, when I opened it my mom ask what the green was for. I said,"This is my Lyme Disease awareness bracelet!"
At that very moment a thought flashed into my head. I remember two specific tick bites I had. I can't remember how long ago, but they were a while ago.
One was on my stomach. I remember having to pull the tick off because it was attached pretty good. But, it left a red mark. I put alcohol and stuff on it because that's what everyone around here says to do. It left a little red sore. Which took about a week to heal.
The other one was one I found under my arm. It was also attached pretty well. Of course, both times I was freaked out because I have always been afraid of ticks. And I had to pull it off and flushed it. It also left a red sore which I doctored. Like the other time, it took about a week or so to heal up.
I dont know why I thought of these at that time, but I can remember now. And I haven't been able to before. Anyways those are 2 specific times I do remember. I felt I should share that. It could be of significance!
Well, thanks! See Ya!
Posted by paulamea (Member # 11365) on :
Hi Christi, please straighten me out on a few things. 1) If your parents aren't happy with the ID doc, what doctor are you going to in B'ham? I thought you were going to an ID doc there. Anyway, are you going back to the one that saw you before?
2) I thought that you had to have a PCP (primary care physician) refer you to a specialist. I didn't know that an Ortho could refer you to an ID doc.
3) Have you had tests like Iron, CBC, chemistry panels, thyroid tests, etc.? If so, who ordered these tests?
4) If your ASO titer was high 2 years ago and is still high, who is trying to get it down and why didn't they try 2 years ago. I'm not sure that having a high ASO titer would affect a lyme test (although I'm not current with these things since we've been out of treatment for about 2 years now). Exactly how do they try to get it down anyway??
5) I think that the IGG and IGM are fairly good tests but the Lyme Test from Igenex is much better. I don't suggest you do that one though until you are under the care of a LLMD. We were given a challenge of antibiotics and then tested on days 3, 5 and 7 (or something like that). That gives you the best chance of the test being positive.
I guess my point is that I'm very curious as to why you don't have a primary care doctor coordinating your care. Even if he doesn't believe in Lyme, he should evaluate you for other conditions and do the referrals...
Posted by paulamea (Member # 11365) on :
Hi Christi,
I don't remember any mention of a Lyme Bracelet. Please let us know how to get one....
Also if anyone has any lyme tapes, DVDs, etc. I would really like to find out. I am hoping to give some talks to the local PTA and would like any info, facts, etc. that would help. I have several books, tapes, etc. but mine are pretty old...
Posted by wilsongal22 (Member # 11210) on :
Hey, I am so sorry this is all very confusing. It is to me as well!
1. In Birmingham I am supposed to see a 'Pediatric' Rheumatologist. To find out why I am having joint pain at 15. I went to the ID in huntsville to see if I should do anything about the ASO being high and if it could be causing my joint pain. He said it probably had nothing to do with it.
2. No, my orthopedist referred me to the Rheumatologist here in Florence to see about my ASO. After a year, he finally told us he knew nothing about the ASO and didn't know if it had anything to do with the joint pain. That is when he referred me to the ID doc in Huntsville.
3. I am not sure about the tests. I have been tested for a LOT of things, but they never told me what. They would just say whether or not it was normal. Which, it was always normal except my ASO. I have had a CBC because I went to the doctor because I was having headaches and not feeling good.
It was normal they said. They couldn't find nothing wrong and said it was probably just stress. I guess you could call it a family doctor. It is Infant's and Children. It is for sick kids not like check-ups or nothing.
4. My orhto and rheumy are telling me to go BACK to the ID doc in Huntsville to see about getting the ASO down. Before he said it didn't matter it being high. And it didn't need treating. Or I can go to a different one in B-ham if he won't do anything.
2 years ago they said it was nothing to worry about. And it didn't need treating. Now, my orhto and rheumy agree I NEED to get it down and find out why I am having joint pain, because it is NOT normal for a 15 year old.
To get it down they just treat it like they do strep. With anti-biotics. BUT, I read on one womens post that treating her's to get her ASO down actually caused it to go up because from what I have read Lyme feeds off of strep. And strep grows faster so the lyme keeps it growing or something.
It is all on my other post.."ATTN:nancyb..ASO" I am about to change the title to just "high ASO" in a minute. I am seeing about getting a Western Blot IGG and IGM done just to see what it says. I know it won't be positive due to the ASO being high.
Basically, the strep hides the lyme during the test. It grows faster so it covers it up, so to speak. I can't remember exactly the details but it is all on the other post.
Also, the Lyme Awareness bracelet was on another post. Sorry. I went to betterhealthguy.com and then you scroll down and it has a tab on the left hand side that says Lyme Awareness Bracelet. It is supposed to be the first 50 people to submit gets a free one.
But, I have seen other websites that have lyme bracelets. I also found a site where you can custom make a bracelet. I made a lyme one and it was really cool. You can order as many as you want. It would be good to do that and then give them out to people and stuff.
Well, anyways, I hope you can better understand now. I know it is all so confusing and I am sorry. I tried to explain the best I could. I hope that helps some. Thanks!
Posted by wilsongal22 (Member # 11210) on :
Update for today! Yay!
Ok, I have been feeling kind of bad today. I have been having some stomach aches. Headaches that are coming and going. And a feeling like I am about to get sick, but I don't.
I am also still coughing. Once I start coughing I can't quit and I gag.
Also, I have had unexplained bruises before. They aren't big. They are a little smaller than a pencil eraser. And they are dark.
I noticed one above my left knee a little while ago. I usually have them around my knees. I also have splinter hemorrages under my finder nails. I have one now that is almost gone.
Also, I noticed that it takes longer for my bruises and sores to heal. I think. It seems that way. I said I had blood taken last Monday. The needle left a bruise the size of a quarter on the inside of my elbow. It is still there now.
It is going away though. Maybe another day or two. Hopefully. Also, the splinter hemorrages have been taking a while to go away. I had 3 at the same time a couple weeks ago and I still had them about 2 weeks later. They stayed a long time.
Could this because because my immune system is weak? Or something? Any ideas?
Also, I have been itching. That sounds weird, but I get really itchy. I have spots all over where I scratch and it is leaving marks. And some time later they heal and leave a scar. Mostly on my hands and feet. But, I itch mostly on my arms and legs. I guess that could mean something.
It hasn't been for any specific reason. Nothing that I know of.
Also, my hearing. Here lately I can be doing something and my hearing just goes. Only in one ear and I hear a sort of ringing. Not really a ringing but an unexplainable sound. It is strange.
Also, I have been turning my tv volume up and it sounds fine, but 1 minutes later it sounds as low as it was before I turned it up and I keep turning it up. But, then sometimes it is to loud and I start tuning it down. It just bothers me.
Well, that is all I can think of. I complain to much. I make this so long and all it is is me complaining. I am sorry. Anyways, thanks so much!! See Ya!
Posted by jasonsmith (Member # 10914) on :
Do any of those labs take insurance? Like Blue Cross/Blue Shield?
Thanks
Posted by wilsongal22 (Member # 11210) on :
Hey, I am sorry. I don't understand what the question is. That is happening more to me lately. But, I suppose I should say 'yes' because I have had a lot of tests and I have BC/BS and they pay for it. Thanks!
Posted by TNJanet (Member # 10031) on :
Christi,
You might want to google Idiopathic Thrombocytopenic Purpura. My grandson had this before he came down with juvenile arthritis. He has tested positive for Lyme now.
We believe the ITP and the arthritis are because of Lyme disease. The ITP causes bruises and lines of reddning. Many believe that ITP and JA are symptoms of Lyme disease in children and adolescents.
Since you seem to like researching, I thought you might want to look into this.
Best wishes, Janet
Posted by wilsongal22 (Member # 11210) on :
Wow, thank so much. I have never heard of that before. I will research that right way. Thanks!
Posted by wilsongal22 (Member # 11210) on :
Hmmm....very interesting. Thanks for sharing that with me. I love to learn new things and that is defiantly something new.
I think it is quite possible to. I could find out with a simple CBC. I should probably do that just to make sure.
Thankks again for telling me about this!
Posted by wilsongal22 (Member # 11210) on :
HaHa...I was just posting about my Lyme awareness bracelet and I heard Lyme disease and looked and Seinfeld is on.
He was talking to a girl and she said my roommate has Lyme disease. And he said I thought she had Epstein Barr. She said well yea but she has that in addition to Lyme. I guess it is Epstein Barr with a twist of Lyme.
It was just strange. Do you ever learn something new and all of a sudden it starts turning up everywhere? Well, ever since I learned of Lyme I have noticed it being mentioned a lot. While, before I never heard it.
I just thought it was kind of weird. So, I thought I would share that since Lyme is rarely mentioned in the media or television and stuff.
Thanks, see ya!
Posted by wilsongal22 (Member # 11210) on :
Hey, well, today has been very hard. I am starting have problems concentrating. I am not sure if it is related or it is just that I can never stop thinking of things. I am unable to clear my mind. I just seems to keep wondering in ever direction.
This book we are reading, The Scarlet Letter, for English, I am having problems understanding. I have to read it out loud to myself. But, then, my mind is thinking of other things as well and the words of the book aren't processing. I can read and read and then I stop and realize I have no idea what I just read.
It takes to long to go back and read it over and over and still it is hard. I can't help my mind though. I have been thinking a lot about Lyme lately. And different situations I that I could go though if I have Lyme and it is progressing.
I just keep thinking about what it will be like in another year or so. I am going through the 'what if' syndrome! Plus, I am thinking about a 100 other things as well.
Ok, and today has been bad because I am having headaches on and off. They don't last long, but they are painful. And I start to not feel good. Like my stomach feels weird and I feel like I am going to get sick or something. It has been coming and going as well.
Also, I have trouble going to sleep because I can't stop thinking about stuff. My mind is uncontrollable! It is like the energizer bunny..It just keeps going! Seriously!
And, I am having those outburst of anger for little reason. I am in and out of sudden mood changes. Someone says something that makes me so angry and I just want to....well, nevermind. I just get so...aggressive so to speak. I get really mad really easy. And I realize it, but I don't change it even though I want to. It is strange.
Today I have been thinking about what it would be like for me if I am diagnosed with Lyme. I mean, I will have an excuse for stuff that I don't now. I have been confused and I have had some speech problems as well. Most people say something wrong every now and then, so I can't tell.
But reading this book, it is early American literature, so the wording is kind of weird, and I read something and say it wrong. I know how to say it, but I keep saying it wrong and I repeat it over and over until the right thing comes out and I get frustrated.
Plus, of course, my coughing, and I have had a little sore throat on and off as well.
Sometimes I am very created. I go through phases. I like to sketch and write sometimes. Well, today during class I felt this strange urge to write. I wanted to put the feeling of Lyme in words that could explain or tell a story about Lyme.
I am not done yet, but I did scribble some stuff down. I figured I would see what you guys thought and maybe get some suggestions.
Just tell me what I need to change or add, any suggestions, good, bad, corny for sure, but still. I had to TRY!! Don't laugh at my effort! It is entitled "If Only People Knew" Here goes:
If only people knew what Lyme could do; The fatigue that just won't leave. The sleepness nights; The body just can't fight. People say your crazy; Your mind is always hazy. Always in pain; Yet, never any gain. Joints that pop and crack; Stiff shoulders, neck, and back. Forgetting, confusing, tingling, and twitching; If only people knew what Lyme could do.
Yea, yea, kinda corny, but still. I just felt it come out and wrote it down. I figured it was a good start and I might work on it.
Well, hope you enjoyed my, ummm...poem, and thanks so much! See ya!
Posted by lymewreck36 (Member # 4395) on :
Hi Christi:
I haven't read EVERY response to your post. I'm not feeling well tonight.
My name is Mary. I have lyme disease, as does my husband.
We have three daughters, ages 8, 14, and 16. They all have chronic lyme.
And guess what, we live in Alabama.
Need someone to talk to, let me know. Maybe we can help.
Lymewreck36
Posted by paulamea (Member # 11365) on :
Hi Mary,
My name is Paula and my daughter (23) and I both have Lyme. How interesting you live in AL. Please tell us more about your situation when you're feeling better.....
Posted by Lymetoo (Member # 743) on :
[QUOTE]Originally posted by wilsongal22:
Unfortunately, with the ASO being high, I can't possibly test positive for Lyme. (from what I have read)
sure you could Posted by wilsongal22 (Member # 11210) on :
Well, of course, I could, but from what I have read strep overtakes the Lyme and it won't show. I don't know why and I guess just by chance it could. But I have just read that. But, I also don't believe everything I read!
Also, I wrote like 15 new lines for my poem thing! It is a lot better though. I was thinking about what people on here have said and stuff and trying to think about everything. And I would say something and it would sound good with something else, so I have 2 sheets of paper now covered with doodles of my poem!
I will put it on here as soon as I go back and rewrite it with the new stuff and rearrange it. I am NOT done yet though! So, you can't laugh at my trying! I just wanted to do something. Who knows what will come out of it.
They say writing your feelings down make you feel better. So, that is want I do when I am feeling down at school.
Oh man, today was pretty bad. I wasn't going, but due to the crappy school system here we can't miss more than 3 days of school within 12 weeks without having to take our exams.
Which is bad for someone like me who gets sick often. Yet, I have made straight 100's on everything. I am in the top 5 of my class, yet I usually have to take all of my exams due to being sick.
So, anyways, I made myself go. I have a HUGE headache, stomach ache, and I felt like I wasn't going to make it. I was walking really slow to and not paying attention to anything. It was horrible. And I had those hot 'episodes' again. On and off. And my headaches are still coming and going as well. Plus, allergies.
Well, I am going to work on my poem and put it on here for all to read!! HaHa. See ya!
Posted by wilsongal22 (Member # 11210) on :
So what do you think of it now?
If Only People Knew... Tick, tick, ticks not only pass time; But they also pass Lyme. The fatigue that never goes away; My body always wants to lay. The sleepless nights; My body just can't fight. Always in pain; Yet, never any gain.
No one to help; If only people knew how I felt. People say I am crazy; My mind is always hazy. Forgetting, confusing, tingling, and twitching; If only people knew what Lyme could do.
Depression, anxiety, rage, and worry; My body can never hurry. Joints that pop and crack; Stiff shoulders, neck, and back. High this, low that; Not even enough hair to fill a hat.
Seeing weird things or hearing a strange sound; Headaches that continue to pound. Head, stomach, muscle, and joint aches; It never stops as my heart breaks. Chills, sweats, and temperatures too; Who knew what Lyme could do.
I cry myself to sleep at night; My spirit is never bright. Faith, courage, and strength all get me through; If only people knew. Doctor appointments, medicine, and tests; Which do you like best?
Kaiser, Lab Corp, and Igenex; Where should I go next? As I watch people's lives move on; I began to feel that mine is gone. Sadly, others suffer too; And most people never knew. So, now you know what Lyme can do.
Well, that is it. I wrote a lot more today. That is 39 lines long right there. That's a lot. But, with all the things Lyme causes I could have 200 lines! Well, it is kind of corny, but much of it is true. It gets all of my feelings out and makes me feel better. So, I hope you can enjoy it.
Thanks, so much, and I want everyone to know that you guys inspire me so much. For what you are all going through now or what you have gone through. And I appreciate everyone who is trying to help me and follows my story. Thanks so much!
Hey, I should dedicate it to everyone on here and everyone who has ever suffered from Lyme or is suffering form Lyme! Well, anyways, THANKS! And HAVE A GREAT WEEKEND!!!
[ 30. March 2007, 11:57 PM: Message edited by: wilsongal22 ]
Posted by wilsongal22 (Member # 11210) on :
Posted by patchas (Member # 5156) on :
Hi Christi:
If you do a search on my name you will see I rarely post a reply or anything.
However a few things you say I feel I have to respond to.
First of all when I was your age - a long time ago - I had to reveal my feelings in poetry, so I can really relate to that.
Next, I have lyme with fibromyalgia. I experience everything you talked about.
I especially have problems sitting on seats that lean back - I use a special chair or pillow that tilts my body forward. I have to sit on the edge of a seat if I don't have my pillow. If I sit slanted down for any period of time - my legs cramp all the way from my feet to my thighs. It is very painful.
You may want to check for tender points that are typical of fibromyalgics. They are located all over. I usually can press on my upper portion of my buttox with my knuckle and boy does it hurt. The spots are usually dimpled on me.
The tender points can be found doing a search for fibromyalgia tender points.
Anyway - Just thought I had to respond.
Good luck.
Pat
Posted by Vermont_Lymie (Member # 9780) on :
Hi Christi:
It's a good poem!
Poetry speaks to people better than prose sometimes.
Maybe it can be added to any school educational materials that any lyme education/awareness programs have. Though I do not know what programs exit, you could check with the Lyme Disease Association. Maybe help others.
Take care and be well!
Posted by wilsongal22 (Member # 11210) on :
I am sorry to hear that. A neighbor of mine told me I might have fibro and I looked it up and I have enough of the tender points to be diagnosed with it. Certain chairs hurt my back and neck.
Especially the ones that sit straight up. Or posture chairs I had to sit in for music class. Those are the worst for me.
Thanks for replying. I don't write poetry often, but when I do it is for a reason. I just have to get it out without actually getting it out. I thought about using it though for like school. Or something else.
Well, we just back from the hampster races and my hampsters took 1st and 4th!
And I have a huge headache right now so maybe I will get on later. Thanks again.
Posted by patchas (Member # 5156) on :
Hi Christi:
Fibro seems to affect people mostly in the lower back.
What I do know is the lyme disease caused my fibro.
There has been research linking lyme disease to it.
Might want to do some searches on that and this may convince your parents that they need to get you tested.
I used the MDL labs - my doctor took blood and I sent urine samples for several weeks because she said lyme tests have to be done over an extended period of time to find it.
The first week my tests were negative - the second week my blood test and urine tests were both positive for active lyme.
But as others on this board have stated you can be tested in may ways.
Blessings
Pat
Posted by wilsongal22 (Member # 11210) on :
Ok, thank you.
Posted by wilsongal22 (Member # 11210) on :
Well, for today, I am still having my continuing headache. It was bad all day yesterday, but today it has been coming and going. A stomache ache, headache, sore knee, sore elbow, I woke up with 2 fingers on my right hand numb. Ummm....what else.
Well, other than that, I think has it been a good day. HaHa. It was nice out so I played golf all day. I did have to walk through a lot of tall grass every once and a while so I was kind of worried during that. But, no ticks!
So, nothing more than usual I don't guess. Well, excep my stress level is like at a 12 because I have driver's ed at school and we start driving. I am a good driver, but I get scared and I have to focus really hard. Which is kind of hard for me to be aware of so much and stayed completely focused, but hopefully I will do good. And I have a lot of work now at school because we are getting close to the end of the year.
9 more weeks I believe. Then, summer, and then I have to go to college. So, I am getting very stressed about that. Plus, vaction. I am getting very worried because I don't like to go away from home and I get sick easily so I am extremely worried about going to college.
Well, I guess I better go. Thank so much! And have a good week. And happy April Fool's! See ya!
Posted by wilsongal22 (Member # 11210) on :
Well, today was a better day until I decided to go race dirt-bikes. Now I am pretty sore! But, other than that it was ok before then. Except for a stomach ache and my persistent coming and going headache that has lasted 5 days now. But, that is pretty 'normal' for now.
I hope everyone else had an ok day. I wish I had more of these. But, I have a feeling tomorrow will bring disappointment. And I am supposed to go practice racing on a local track. Which is like a dream of mine to race dirt-bikes and 4-wheelers, but that will never happen.
Mainly because of money and I would fall apart to easily! But, other than that today is an ok on the scaled rating table!
I hope everyone else had one of those 'better' days! Well, I got to go, it's late and I have school tomorrow, so, see ya!
Posted by wilsongal22 (Member # 11210) on :
Today started good and went bad. I was having a good school day and then it all went wrong about half way through. I did PASS ALL OF MY GRAD EXAMS!! YAY! But, then I started feeling really bad. And now I know why.
But, I love to ride and wish I could race dirt-bike and tonight I went to the local race track and watched a bunch of friends practice. It was so great going to the tarck, but heartbreaking because I wanted to be out there with them.
I can't partly because it is expensive and I don't have money for a bike and gear and the other part because I would probably wreck once and it would be over. I have enough bone problems my parents probably wouldn't let me. I could still go out and practice with them.
I wish. Uh well, I will just sit here at my computer depressed...it is much better than racing...(sarcastically speaking of course)
Well, I am hurting all over and feel like I got hit by a freight train. Or wish I would be hit by one. Either way, I feel like crap.
Well, since I don't feel good, I will get on later or something. Thanks. See ya.
Posted by TNJanet (Member # 10031) on :
Hello Christi,
I just noticed how lengthy your thread here has gotten. You originally posted it in Medical Questions. However, it seems that now you are posting things that seem more appropriate for General Support.
How about starting a new thread in General Support? You are receiving and getting support and that just seems a more likely place for the type of remarks you are now making.
It appears that posting here and reporting in about your day, what you did, how you felt is very satisfying to you. I think that is great...just wanted to point out that your thread is VERY long and it probably needs to go to General Support now.
You may also have specific medical questions. Then it would make sense to start a new thread with the medical topic in that new thread.
I doubt that many readers and posters here have the time or concentration needed to read the 5+ pages in your original thread. Posting while occasionally changing your topic would allow more people to read all you write and might even encourage more to respond.
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