posted
christi, i have comments for you from reading from start to finish here:
locked bedroom door ... sorry, but a bedroom door should never be locked in my humble opinion.
glad your dad said he knows about your computer emails. print off this entire thread you started, and let them read it.
MYSTERY ILLNESS - LYME; did they see it?
have you watched UNDER OUR SKIN documentary trail yet if you do NOT have dialup; can't get dialup. that would be good to watch with your folks; 20 minutes i believe.
reflex sympathy syndrome -- another thing to look into since it affects athletes ... their feet, ankles, etc. i learned of this on pax tv show, DOC, with singer/actor Billy Ray Cyrus in it.
graduation exams - you are taking these? you're 15 and a senior? please clarify this ok.
troll...yes read in treepatrol's newbie links about trolls/troublemakers.
as lymemomtoo said, she is NOT calling you a troll. she just commented you may not be getting enough responses per your wants because we've been under attack really bad for 6-9 months with even a "dr. imposter troll" giving out medical advise.
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quote:Originally posted by bettyg: locked bedroom door ... sorry, but a bedroom door should never be locked in my humble opinion.
I'm sorry Betty but I'm trying to figure out what your humble opinion about locked bedroom doors has to do with Christi and her illness?
I do not see this as a comment that can help Christi move forward with getting treatment - which is what we are all trying to do - and it is yet another unnecessary thing for Christi to read and see that others are passing judgement once again.
Some people still do not respect what a closed bedroom door means (like little brothers and sisters) and a lock may be necessary.
Besides, if Christi's parents have an issue with this, I think they would have removed the lock.
Also, it wasn't Christi who thought Lymemomtooo was saying she was a troll. That was a misunderstanding of how LM2 interpreted my post and her response was directed to me.
I apologized right away to LM2 for causing the misunderstanding as I was only trying to put people at ease with Christi by telling my history with finding Christi on another forum. Unfortunately, I don't think the apology was accepted because she didn't offer any response in her following post.
But now getting back to the issue at hand - your illness - Betty does have good advice about watching the shows about Lyme as well as the movie trailer. I'm pretty sure I gave you the link to the trailer when we first started talking.
quote:Originally posted by paulamea: If you seriously want to do this, then I wouldn't waste any more time on what people say about you or what they think about you. Save your energy. You should be under the care of your family doctor, a psychiatrist possibly for the depression and also a LLMD.
Christi, this is the best advice I have seen for you yet.
All of these unnecessary tests and doctors appointments are using up valuable time and money. You need to focus all of your energy on seeing a LLMD.
Paula - thank you for trying so hard to help Christi move forward with getting a diagnosis. I live in Canada and I can't be of much help with helping her find a LLMD.
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Good morning.
I'm sorry you've been through so much.
My daughter will be 15 next month. She has lyme, which started with aching knees.
Fortunately, she had a MOTHER with lyme -- ME!
So she was spared the duck run-around you've endured and not been able to get past.
I quake to think of what she'd have gone through otherwise... Xrays, MRI's, steroid shots, etc., etc. NO ONE WOULD HAVE THOUGHT OF LYME, even though we live in an endemic area~!!!
Possibly you've been given an ELISA - a nearly worthless test promoted by most docs as the first step of lyme testing. Likely it was negative, thus you never got the more accurate test, a western blot. More than half of later stage lyme patients are negative by ELISA, and positive by western blot. More about that here: Why a negative ELISA means squat.
And another thing:
While it's true that some people are bedridden from lyme, most are not.
Thus, I don't take your continuing ability to go to school as meaning you don't have lyme.
My daughter has not only continued in school but is an honor student. She's in advanced English and writes beautifully, as you do.
She is also CDC positive for lyme, but has responded really splendidly to two courses of treatment - lasting several months each. Most young people respond really well -- far better than us old geezers!!
I second the suggestion for an IGeneX western blot -- your LLMD will have you do it anyway. Just call them up and they'll send you a free kit. Have any doc sign off on it (claim it's to "humor" you!) and have a local lab draw it.
Don't lose heart.
And please forgive the doubters -- we've been plagued by frequent imposters, which you'll understand by reading about the 'lyme wars.' Everyone's suspicion index is high... Don't take it personally.
Being a teenager, your confidence level is already pretty low --especially after repeated batterings. Doctors who don't listen and parents who don't understand only reinforce that. The search for a diagnosis is horrid enough for adults who presumably have developed enough self-esteem to stand up for themselves, and unimaginably hard for a teen who hasn't had time to develop those life skills.
Your LLMD experience will be like nothing you've had before. Do everything you can to get there. Take all your medical records.
Soldier on, and good luck. Please keep us posted.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Hi Christi, please don't feel like I'm trying to bullnose you into anything (although it may seem like it), I'm really not. I just look back at the years we lost because I believed what the doctor's said. We had a diagnosis of chronic fatigue, fibromyalgia, psychosis, mono., headaches, chronic back pain, etc., etc.
At 16 my daughter had to sit on a stool just to wash a few dishes and was sometimes too tired to even answer the phone, yet kept right on taking her to the same doctors. When I read the Good Housekeeping article about a lady who did not give up on her daughter and eventually, after many psychiatric episodes, they discovered she had lyme and she was recovering, I was was like a missile, one thing on my mind and that was trying to prove to everyone that she had lyme. I knew in my heart that she had lyme (later I learned that I also had lyme) because we lived on 10 wooded acres, had deer all around, mice, etc.
Anyway, I went round and round trying to "prove it" without much success. Wrong tests, more medicines, told she would "never be the same". I eventually took her to the University of AL at Birmingham to see 2 infectious disease specialists. I had every record, everything I could find from the computer, books, etc. and they never even let me show them any of it. They read over the referral, looked right at me and said """she doesn't have a speck of lyme disease in her body, we don't have lyme disease in AL""". I almost went bizirc. That seemed like the last straw. Where was I to turn if the specialists at UAB said she didn't have lyme?
A friend later told me of his friend who'd had lyme and been treated. I contacted him, we met at Shoney's and had the most interesting conversation. Everything he had gone through before he started treatment was so similar to what my daughter had gone through. They related instantly to each other's struggles. We were more convinced then and he gave us the number to our LLMD. (p.s. - he is better now from lyme but continues to live with the after-effects of treatment (yeast) from doctors who were not knowledgeable in lyme yet tried to treat him anyway).
We saw our LLMD not long after that, he immediately started by daughter on treatment and ordered specific tests for her after she had been on the treatment for a few days. These tests were sent to Igenex and 3 out of 3 were positive.
Yes, there's a lot more to this story but bottom line is that you first have to have a diagnosis which is sometimes difficult but can be done by a caring and interested physician. Our doctor spent 3 hours with us on the first visit. If he feels symptoms are consistent, then he will start treatment and if you start to get better, then it will all have been worth it.
Anyway, the most important thing now is to have someone directing your care and treatment, someone who is knowledgeable and caring and who can start helping you get better......
Sorry this was such a long note but I feel it is important for you to focus on finding a road to get better.
p.s. My daughter went on to get her learner's license, her driver's license, she graduated top 10% of her class and now works for the Sherriff's Dept.
also in AL, you have to pass all parts of an "EXIT EXAM" before you graduate. This test is given several times to students starting in the 9th grade. I think that's what Christi is referring to.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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bettyg
Unregistered
posted
nancy, i stand by my comments as they were typed. it's my observation; nothing more; nothing less ok. END of subject.
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Well, first off, I appreciate the replies so fast and so many! I had to read each one and right down what I was going to say to reply because I forget once I go to reply! So, I am going to go by person and reply!
kelmo- I absolutely hate getting up for school. I just want to keep sleeping and laying there. It is the worst time for me in the morning. I get sick to my stomach in the morning if I get up to early! It is awful.
paulamea-I have BC/BS for insurance, I think. And they are really picky about stuff. I had to go there medicine and therapy just for them to approve my MRI for Friday! Honestly, I have wanted to be homeschooled because I hate being in crowds. I hate being around people. I am very anti-social now.
I don't like to talk to people much. Or anything. But, I also take certain advanced classes and AP, and online classes that I can only do at school. I could probably do them with a teacher from the school coming and bringing my work or whatever.
I am also in a program with North-West Shoals Community College called Upward Bound. That is in Muscle Shoals. If you have ever heard of it, but it is threw our school and we get to go to tutoring once a week and we get paid $8 each time we go. We get FREE cultural trips to colleges and stuff. We also get to attend the summer semester at Shoals College.
We take our basics and that way we get ahead and get to experience college life. And this is all FREE. It is for students who's parents didn't go to college and people with low income. So, it is a huge deal that I am in it. There are only 3 from my school!
We do have to take our graduation exam starting in 9th grade. It depends on the classes you have taken. I have been in advanced math and english since 7th grade so therefore I got to take math a year early. I also took science. I passed both!
Then, every 10th grader is required to take whatever they have not yet taken in the spring. Which was last week. I had to take english, history, and reading. I am really sure I passed all of those!
I have been to B-ham many many times. My little brother had a brain tumor when he was 2 so we have been to Children's Hospital many times. Also, my older brother had a heart murmur he had to go there for. But, from here it is about 3 hours. Sometime less sometimes a little more.
I just went there 2 weeks Saturday for an Upward Bound trip to UAB. And then the mall, of course!
bettyg- Ok, this is a sensitive subject. But, my locked door! Ok, first, I appreciate the opinion, and that is ok. Everyone has an opinion. But, I also have a good reason.
First, I have 7 brothers and sisters. They have friends who stay here 24/7. And I have little neices. Also, my family, does NOT know how to knock on a door. I tried to tell them to just knock and I would NOt have to lock my door.
People barge in constantly, they leave my door open, and we have like a farm of animals, so when the door is left open the dogs feel free to use my room as their bathroom. That is not to good either.
I would rather my stuff stay dry and stain free. It has become a habit that when I walk in my room I always lock the door when I close the knob. Not for anything bad, but because I like privacy where people don't barge in whenever. Where I can change and not worry about people walking in or I can write down my personal feelings or whatever without my privacy being disrupted.
I see what you are saying though and I agree. Only if there were not so many people in my house and they knocked before walking in.
My parents didn't see the mystery diagnosis. They aren't into medical shows like I am. I never miss it. I have seen every show on discovery health channel! I did, however record it on my DVR.
I am a sophmore by the way. We take exams starting in 9th grade depending on the classes we have taken. Everyone takes all of them in 10th grade no matter what and then if they are failed they have every fall and spring to try again until they graduate. But, if they are not passed you have to have summer school and you don't get to walk with your graduating class.
nancyb-I know people think the locked door thing is weird or wrong, but they don't live in my house where people don't know how to knock or anything! I just like people to leave me alone. I don't like being around people.
Thanks for the link I will be sure to watch that. I do agree that that was the best advice I had gotten yet! And I am so very thankful and grateful that someone is willing to throw me in there so fast and help me out!
MichelleM-I am also an 'A' honor roll student. I take advanced, AP, online, and ACCESS(AL online computer class thing). At the beginging of the year I was ranked 7th out of around 140+ students in my class. I have had a 100 average in all of my classes since then so I am probably in the top 5 by now.
I am so glad you can understand what I am going threw.
paulamea- UAB is the closest best place to go, but when they don't know what is next? You know. I did see an orthopedic specialist from B-ham once. He just told me to go ahead with my foot surgery.(which I did) And that was all.
I also just got my permit in January, I think. I drove for the first time yesterday! It was very cool! Scary at first, but then it was really cool! I get my license July 28!! That is my SWEET 16!! Yay!
Well, I think that wraps it up...I am sorry it is so long, but I tried to reply to everyone who had replied to me! I probably forgot some. I had to write most of it down on my sheet of paper so...
Thanks for the advice. The help. The support. And the stories. I enjoy reading them! Oh, and I appreciate that someone actualy went to my myspace and checked it out. I think you can learn about about me and my personality on there, just by everything I have and stuff.
Thanks so much. And sorry for taking up so much of your time. Thank you!!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
BTW, my myspace, www.myspace.com/wilson_gal22 , has pictures of me if you want to put a face with who you are talking to! Thanks!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
I was just wondering paulamea, or anyone else, if you guys have AIM? Or AOL if that is what you say. Just instant messaging. I think it could be easier than this. But, I also have MSN but I seldom use it. I stay on AOL/AIM because I am always on my computer! But, anyways, if you would like to talk to me my screen name (s/n) is GolfGry22 ....Well, thanks!
P.S I actually think it would be good for some of you to take a look at my myspace. I know there is alot of talk about it and teenagers, but I think you guys would know me more if you just looked at it too. Just a suggestion. Or if you want to put a face with me then it is the place to go!
THANKS!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by wilsongal22: BTW, my myspace, www.myspace.com/wilson_gal22 , has pictures of me if you want to put a face with who you are talking to! Thanks!
Your profile is set to 'private' -- can't get in!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I know it WAS. Sorry. It automatically does that with people who are under 16 so I went and changed my birth year to 1990 so now it says 16.
You can try again and it should work.
PLEASE DO NOT FREAK OUT THAT MY MYSPACE SAYS "16 YEARS OLD" I HAD TO CHANGE IT SO YOU GUYS COULD BE ABLE TO ACCESS IT WITHOUT GETTING ONE OOF YOUR OWN AND EVERYTHING!
Just wanted to clarify before someone said something about me lying about my age or something. I had to change my age on there so everyone is able to view it now.
I AM ONLY 15!! So, don't pay attention to that part! Do enjoy it though. And if you are wandering about the Hawaiian stuff, it is because I want to go to Hawaii Pacific Univeristy for undergrad and graduate school!
I am excited and thought I get into the spirit! Do enjoy!
Thanks so much!
Hopefully you can learn more about me, my personality, what I like to do, and my interests beyond here. THANKS!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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It seems like you would be tempted to feel powerless about finding a way to recover from your illness. But don't forget that you have faith, hope and love. And love never fails. I have been where you are not so long ago. I still have to wear my hair cut short because it is too thin and looks bad when it is longer.
But I am sustained because I have hope. And this Hope does not disappoint us. You know that Love is watching over you for good. You know that you are not alone. And you know that you are not a helpless victim of circumstances.
I was most tempted to feel helpless when I tried to pick up something heavy and my hand was so weak I dropped it. I wanted to cry. I felt like my body was a stranger to me. What was wrong? But I couldn't allow those feelings to paralyze me.
Go find yourself some good promises and say them out loud to yourself. You will be amazed how much healing there is in speaking the truth. (For some reason it has to be out loud to really affect your body strongly.) You don't need a doctor's supervision to speak healing promises out loud. You don't have to worry about an overdose. (Maybe you should worry about an 'underdose' though! [Smile] ).
And have faith that someday your need for your parents and a helpful doctor to understand will be met. Don't be discouraged if it takes time. You have patience. Use the waiting time to grow in your understanding so you can be able to partner with your doctor in your healing.
You will recover from this, and you will be a stronger, deeper, wiser woman for going through this!
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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posted
Ok, this is the Excel spreadsheet I made of my symptoms. The symptoms, of course, are on the left and either often, sometimes, or seldom is on the right. It is 53 in all. Well, here they are. I tried to list everything I have/had before. Whether it was once or twice or everyday. I still listed it. Well, here it is:
Allergies:nasal;other--------------------sometimes canker sores (frequent)----------------------often Chills-----------------------------------sometimes night sweats--------------------------------seldom
often feeling hot/cold-------------------sometimes cough----------------------------------------often sighing-------------------------------------seldom headaches------------------------------------often hearing changes-----------------------------seldom
joint pain NOT relieved by NSAID's(ibuprofen-often muscle twitching-----------------------------often parasthesiasa(umbness,tingling sensationsometimes stomach aches----------------------------sometimes
blurred vision(sometimes)-------------------seldom runny nose-----------------------------------often pain migrate from joint 2 joint--------------often joint aches----------------------------------often joint pain without swelling------------------often muscle aches---------------------------------often
Well, that is all of them except a few that I didn't list. I know it seems unreal, but it is very real to me. This is just for reference. A more updated list and how often(or not) it occurs. Well, thanks!
P.S Remember to check out my myspace
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Hi Christi, I've read your latest posts. Very detailed and very interesting. I will check back at your MySpace too since it's been re-set.
I know you're very busy dealing with your illness, schooling, etc. but you didn't say whether you have talked with your parents about my offer to help you get an appointment with a LLMD. I would be glad to talk with them on the phone, even meet your family in Birmingham to talk sometime but we should start working on a plan to get you help ASAP. Do you have all of your medical records, results, etc.??? Are your parents willing to take you to Mobile?? What are their feelings about me getting involved or helping with this??
I see that this post was started 03/01, there is a lot of good advice on here but have you taken any action already about getting to a LLMD?? I don't know what the rules are about posting my AOL screen name or my phone number, but you can private message me and I will be glad to give it to you...
I know that procrastination is a big part of Lyme brain fog which I had for many years (about 13), so I really understand how hard it is to concentrate and accomplish tasks that seem to be huge, but we need to stay focused on getting you this help ASAP. (Just wondering, but do your parents or any siblings have any symptoms of Lyme disease? Your parents may be dealing with issues themselves that are lyme-related and they don't realize it. I was in that boat as well.)
So back to the problem - Sorry to be a little pushy about this, but where are we at and where are we going? You are at increasing risks of developing neurological symptoms the longer you go without treatment if you do have lyme disease and that is certainly not the direction you want to go in. Also, you need to know if you don't have lyme disease so that you can pursue a different course of action but you should definitely be finding out a specific diagnosis so that you can start to get better.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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posted
Hey, I haven't talked to my parents yet. I am not stalling or nothing, I just want everything to happen at the right time. I am gonna see what the MRI says that I have tomorrow mornin at 9. And then if I go back next week I am going to have my mom ask about it.
Just to see what his reaction is! I have told her that I found some doctors in AL that treat it or whatever and she didn't say nothing. I think if he doesn't do anything and if he even tries suggestiing scope surgery I am going to say no.
Because I know it won't help nothing but make it a worthless surgery that I have to go threw. I will then explain to her then that I want to do things my way now that nothing else has worked.
I am giving her a list of my symptoms and telling her about you and the fact that I am tired of getting no answers and I think a different doctor can help me.
Where exacting are you wanting me to go?
I don't have my records. If her and my dad say ok then I will get my records and everything to fax to whoever you want me to fax them to. I think if they can tell me by that if they can help me or not it would be good.
I would hate to waste a drive that far. Plus, my parents would have to take off and me and my brother and sister would have to miss school. And we would have to get a rental vehicle. (which we have done many times.)
I think though if I can explain myself and convince them and some other people that it is a good idea and they COULD help me then they would take me. If it is worth the drive and everything then they defiantly would.
I have not told them about you yet. I am just going to wait and see how the MRI goes and tell her to mention this to the doctor and see what he says. Then, I will say 'well, I know a person that is willing to help and I want to do it.'
Then, talk it over and everything and just convince them. Maybe talk on the phone or by AOL (which I will send you a private message about.) that might help them understand more about it.
As far as where I am at, I haven't told them everything, but I have started and they know more know. I told them about lyme and the doctors I found and I made a Excel sheet of my symptoms for them and whoever else.
As far as my parents or siblings, I don't think they really have any symptoms. Most of my symptoms are little things that I didn't even realize could be a symptom.
I could be wrong though. I mean there are many symptoms and people present in different ways. So...
Today was bad. I have been writing a research paper for english and last night I stayed up til 12 something,which I can NOT do. It makes me feel really sick and bad.
Then, last night I had a really bad dream that I was having a MAJOR muscle cramp in the back of my left knee. And I was moving and holding it and crying it hurt so bad.
Then, when I woke up this morning, the back of my knee hurt really bad and still does, along with my right knee that always hurts!
I felt like crap when I woke up and I wasn't all there. I was so tired. I slept some in class today. And I felt awful as far as I had a headache, stomach ache, and I felt, I guess, lightheaded. I guess you could say. I just didn't feel there. Like I was in my own spinning world.
And my cough has gotten a little worse. I don't cough constantly, but, it comes and goes sort of. When I do start coughing I can't stop.
Plus, I am super tired. The back of my neck is starting to hurt. And my right knee hurts at school so I prop it up on another desk or straighten it out. It doesn't hurt as much then.
I have a different history teacher thhis trimester and he makes us write about a 1/2 page of notes and I thought I was gonna die!
My writing starts off big and neat then goes to very little and scribbly. Because my hand hurts so much.
Well, I think that is everything. I might be forgetting something...
Oh yea, the neurological symptoms. I really hope I don't get those, but if I do then I will know for sure it has to be something. I sometimes feel like it is all in my head and it is just some fantasy I am making up or something.
But, I know it has to be something. I really hope anyways. I don't want to be crazy because there is nothing wrong. That would be bad.
Well, I guess that is about it for now. Thanks so much for all the help!
See Ya!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Hey, well, everyone will be glad, and proud, that I finally told my dad.
I went in his room and he was just walking around so I asked him if he was bored. He said why. I said because I have something you can educate yourself with.
I told him to look up lyme. We discussed it and I said it was high on my list. I may not have it, but it is better that I make sure first so I can move on. He asked to know what was wrong other than joint pain.
When I gave him my list he said,"well, 1/2 the things on here everyone has everyday." Like I said most things on it are little things people wouldn't think could be symptoms.
I told him and he said he couldn't help it was something I should ask the doctor to test for. I told him it often gave false positives and was more of a clinical diagnosis. He said to tell my doctor when I go back and asked to be tested or that he refer me to someone else.
I know the doc will not think so and that's when I tell them I know someone who can help me with getting a doctor. That's is when I mention Paula. And how she wants to help me.
Then, hopefully, they will go for it. I really hope they will. At least send my stuff to the doctor to see if he could help me or not. That wouldn't be a big for my dad to do.
If the doc thinks he can help then, of course, my parents will take me.
I felt very very very nervous about telling him. I am not really really close to my parents. So, it was hard talking about it. I just kept in the back of my mind that I wanted to get help and it was the only way.
I kept repeating the stuff people told me on here. That I have to talk to them before I can do anything else about it. And I really want something done so I knew I had to sooner or later.
Since Paula has offered to help me I wanted to go ahead and get everything out so maybe I can get something done. I felt weird after I had told him.
I will admit, I feel alittle better now that I have gotten everything out. Now, that I can start to get to what is important.
Thanks so much, I could have NEVER done that without you guys on here helping me and giving me support and courage. THANKS SO MUCH!
Well, I have my MRI tomorrow morning and then hopefully I will go to the doc next week. I will keep everyone posted defiantly.
Thanks so much! It means so much to me! Now I am going to bed because it is late(10:30!) and I have to get up early(8!) So, thanks so much!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Well, you are having and MRI. They must believe something of what you say.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I am having an MRI on my right knee because he doesn't know what is causing the pain in my knee. This isn't because of anything overall. Unfortunately. Just my knee. I have had everything else, might as well an MRI. I have a feeling it won't show anything anyways.
Uh well, that is when I am going to ask him about lyme. Just for his opinion. And for a good story of how he refuses that it couldn't possibly be Lyme, not in AL! Which he probably will say something along those lines.
If he actually stays in the room this time! And doesn't end up out in the hall!
Well, thanks, time for me to go to bed! See ya!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Hi Christi, I know you'll do fine with your MRI and then you just have to wait for the results. There may be something that they can fix in regards to the knee pain.
When you said you were going to see the doctor next week, do you mean you have a follow-up with the orthopedist or are you going to see a family physician? An orthopedist probably wouldn't be too interested in ordering any tests but you might could get your family doctor to order something. If he would, the best test he can do is a Western Blot IGG and IGM (do NOT do an ELISA test first and hope it's positive so that they will roll it over into the Western Blot). The Western Blot IGG and IGM have to be ordered specifically in the first place. This may not be positive by lab standards but it can be helpful when reviewed by a LLMD.
Ok, I'm very glad you talked with your father. It may be helpful for you to print out some of the personal stories of people who have gone through so much before finally being correctly diagnosed and treated for Lyme. The web site I listed earlier has the stories of Les Roberts and Kara Tyson. I have personally talked with both of these amazing people and they were very helpful to me and my daughter.
You mentioned being forgetful and also being in something like a "brain fog". These are neurological symptoms as described by many people with Lyme Disease. You can read more about this in some of the personal stories. Also I'm going to post my daughter's personal story and will post a link to this when it's finished.
The LLMD that my daughter and I saw is in Mobile. His specialty is in Internal Medicine so he sees all types of people, not only those with Lyme. I met both Kara and Les through him a few years ago. You don't need a physician referral to see him. I do believe your insurance may possibly reimburse you for visits to him as well. I just wanted to let you know that even if you do not have Lyme Disease, he can evaluate you including your past history and tests, then give you his opinion about your overall condition and the best course of action for you to take to start to get well.
This may be overwhelming to your parents with all of their responsibilities, but you seem to be very resourceful and level-headed. Just continue to keep them informed of as much information as possible. Hopefully they will have an open mind about this and help you as much as possible. You definitely will need your family's support now and in the future....
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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""""Oh yea, the neurological symptoms. I really hope I don't get those, but if I do then I will know for sure it has to be something. I sometimes feel like it is all in my head and it is just some fantasy I am making up or something. """"
This is from your earlier post this evening and I can tell you first-hand that if you were to develop neurological symptoms, it would not mean that anyone would "know for sure it has to be something". This would probably get you a one-way ticket to the psychiatrist for sure and then you would have one more doctor to convince which would certainly not make anything any easier.
Stay positive, pray, meditate, anything that you feel helps you is what you should be doing. Get lots of rest too. Also, it would be a smart thing to start keeping a daily diary with things like your temperature when you wake up, go to sleep, etc., how you feel when you wake up, etc., all of your symptoms on a daily basis. This can later be condensed but it can be helpful for you to see how your condition changes.
OK, I've said plenty, hope you have a great weekend...
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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Yes, I have a follow-up so I can take my MRI pics to him to read. I guess.
Well, it was not bad(which I didn't expect it to be). The MRI was loud. Soothing in a way! I was sleepy though and I had to lay there for a long time. I felt like I was moving further in the tunnel when I really wasn't and I am clostorphobic. (spelling?)
I did good. He gave me copies to keep. And I have to take them to the doctor this week. I have 10 of them. They are very fascinating to look at.
It is my new hobby. My older brother is going to school to be a radiologist. I have been staring at them all day trying to figure them out. I mean the angles and what everything is. Not looking for something abnormal. If I had normal ones then I could, but I don't.
I brother said there was fluid in my knee. I am not sure though. It kind of looks like it, I guess. They are very strange though. I think I may frame one to put on my wall! Not really!
But since I want to be a doctor they are very fascinating to me to just look at. It is like artwork. All the little details and everything. It is the coolest thing I have ever seen. Better than all the x-rays and bone scans I have had.
Well, other than that, on my left leg the back of my calf muscle right under my knee is hurting worse. That was a really weird dream I had about it.
It hurts most when I sit for a long time and then get up. When I wake up in the morning it is very hard for me to even walk on it.
What do I do when both legs hurts?!
I don't know either. The left one hurts on the back and the right one on the front. Hmmm.... that is strange.
Well, I have had a very very long day. I have been all over town about 5 times and to about 15 different places. And I drove twice!! It is nerve racking.
Well, I am getting a headache and I am really tired. So, I am going to go to bed.
Thanks for everything. See Ya!!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Christi,
I have been following your story and have to admit I am getting a little frustrated by your situation.
When I saw you had 7 brothers and sisters, well that helped me to see that your mom and dad must be very busy parents.
I think it is a positive sign that your Dad is now asking questions re: Lyme.
I think that this disease is often very difficult for someone who doesn't have it to understand.
My neighbor, who is a RN, who also has Lyme said she has never seen a disease like this which can affect the whole body in such a way.
I am still learning about Lyme and co-infections every day and I have Lyme/co-infections.
Continue to "gently" educate your parents. First, they obviously have a lot on their plate, and secondly, there is soooo much info. I think it is hard for anyone to digest.
I can appreciate your struggle to get somewhere. It was difficult for me and I am an adult.
I am praying for you and your parents.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I have been trying to slowly tell them more and more. I don't want to overwhelm them or anything like that.
But, I don't want to go to slow.
Like I said before, we are going to mention it to my doctor. Whether he knows anything about it or not, I am going to make sure he knows what we think.
The night I told my dad he didn't really relieve. But, I think he thought there was a chance.
He knows I am very smart and he trusts what I think about it. He said he knew someone once who diagnosed herself and she turned out to be right.
He said I should do what I feel. If I feel that strongly about it then I should tell the doctor. He knows how much I like to study medicine so I think he is just going to go with me on it.
I mean, I didn't just see it and say 'yes, that is what I have.' I saw it and read about it and I have come to the conclusion that I "could" have it.
I have a lot in common, a lot of the symptoms, and, under the circumstances, a chance to have it. I may be wrong, but it IS a start. A push to get to where I am going.
Hopefully, if I start saying stuff that they haven't thought of they will do whatever they have to just to make sure, even when they think I am wrong. They will probably do it just to prove me wrong, but that doesn't matter.
I just want to rule stuff out and move on to whatever is left. My orthopedist is really good about ordering tests. Usually if we say we want a test he will order it.
Probably so we will go away and stop bugging him! But, anyways, I am going to let him know.
Plus, he still has to read my MRI. Hopefully, that will go good.
Well, thanks so much and I will keep everyone posted. THANKS!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Christi,
Don't forget that Lyme is a clinical diagnosis.
There are people who don't test positive on a Western Blot that do have Lyme.
Make sure you use Igenex lab to do the testing.
They also rec'd to my husband (who is getting tested via Igenex this week) that he go off his doxycycline (300mg a day for about 2 months)
ten days, then to test on the 11th day. They said he would be more likely to show more bands, following being on antibiotics.
He has been off 9 days now and is starting to back slide.
Don't be suprised or disappointed if your GP doesn't know much about Lyme.
I saw many MD's who refused to even test for Lyme as "we don't have that here".
Mind you my neighbor, myself and probably my husband all have Lyme disease.
This is just another step down the path of a journey.
A big one if you test positive, but not the end of the road if you don't.
Remember that the testing helps support a diagnosis of Lyme, but the reliability of WB's is still not 100%.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
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.
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Hi Christi, 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.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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It 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.
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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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!
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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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.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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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.
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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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.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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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.
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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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
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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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!!!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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i 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
Posts: 8337 | From the other shore | Registered: Jul 2002
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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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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I 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...
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Hey 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
Posts: 156 | From Corpus Christi, Texas USA | Registered: Sep 2004
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
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
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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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!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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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.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
I 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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Hi Christi, 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...
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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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...
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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posted
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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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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
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
Wow, thank so much. I have never heard of that before. I will research that right way. Thanks!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
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
Posts: 1032 | From North Carolina | Registered: Aug 2003
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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.....
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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posted
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!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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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!!!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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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.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
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!
Posts: 2557 | From home | Registered: Aug 2006
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posted
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.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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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.
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