posted
Ok, first off, I am glad to be on here. And glad someone told me about this place. Ok, I will start at the beginning and try to be as detailed as possible.
I am 15 years old. About 5' 4": 170 lbs. I am in the 10th grade now. When I was in the 7th grade(12 I think) I played basketball for my school team. I started having pain in my left knee. I went to an orthopedist and he said it was just tendonitis. Common for people who play sports. So, everything continued on and that was all.
Then, I had a lot of pain in my knee from running so I played volleyball instead in the 8th grade(13). I started having really bad pain in my left heel. So, I went back. He said I had a stress fracture. And he didn't do anything for it, just said what it was. That was in October 2004 I think.
Then, around January we went back. He didn't say if it was still there or not he just said to wear a boot and come back in a month.
A month later I go back and he says wear the boot, take aleve, and come back in a month.
The next month, basically the same. In April I had a cortisone shot. Didn't help at all.
May 1st, I went back and he put a cast on it. June 1st, I got the cast off. It hadn't worked. He referred me to a specialist for a second opinion. To make sure he had done everything right and that next I should have surgery. The specialist agreed. I had a nerve test on my feet to make sure I didn't have any damage that would need repaired. He said it was plantar fascitis. I had surgery July 19, 2005. The surgery did work and I don't have pain any more.
But, 2 weeks after the surgery, my arms started hurting. My right knee had been hurting. My wrists and elbows hurt. I went back about my right knee and he did blood tests. I had a very high ASO. He referred me to a rheumatologist. He didn't do anything about it. He put me on some arthritis drugs that didn't help at all. He did multiple blood tests. I had a ton of bone scans done. Nothing. X-rays. He failed to tell me for a year that he knew nothing about the ASO. He referred me to an Infectious Disease Specialist. He told me that the joint pain 'probably' had nothing to do with my high ASO. He said not to worry about the ASO being high. From what I have read, having a high ASO for so long causes heart problems, specifically, Endocarditis. Also, I have recently learned that if someone has Lyme disease and a high ASO the Lyme feeds off the strep antibodies in the blood stream. Therefore, the Lyme test will always be negative. But, the lyme actually feeds on the strep. That is very interesting. But, I couldn't find anything on the internet about this at all.
So, I finally said just forget it. I don't want to go back to the kook who didn't do nothing. I didn't go back for some time.
Now, I have all kinds of symptoms. Joint pain: knees, wrists, back, neck, elbows, basically everything. Depression. Abdominal pain. Chest pain. My ribs hurt when I push on them. Shortness of breath with activity. Headaches. Hoase voice sometimes. Sore throats. Cough. Runny nose a lot. Slinter hemorrages(main sign of endocarditis). Muscle pain. Fatigue sometimes. Mood changes. Irregular periods. Extremely painful periods. Very emotional reactions(more than before). Attitude changes(noticeable by myself and my parents.). Chills sometimes. Small muscle twitches. I shake alot but I don't know if that is a symptom. Knot-like things on the inside of my elbows. Concentration problems (ONLY sometimes). My symptoms come and go and are sometimes in different parts of my body.
So far, every blood test and everything have been normal. No one knows. I have had people on wrongdiagnosis.com tell me Hypothyroidism which is a possibility. I fit most of the symptoms. And I have an aunt who has it so it is in the family. Fibromyalgia. 2 People have told me this. I agree. I fit all/ most of the symptoms. And 6-7 people said Lyme disease. Which I agree. I took the survey thing and I circled about 22 symptoms. I am not sure because I have had some before, but they have only happened once or twice. I didn't know what to count and what not to count.
Well, I hope I got everything! I probably forgot a few symptoms! I went back to the original person I was seeing, my orthopedist, Feb. 28 07' for my knee and my wrist I hurt. The x-rays were clean. He said I probably sprained my wrist. He said the pain I was having in my knee was in the area where my cartilage is. He said I may have torn it. He is going to try and get an MRI of my knee. He said I have to take aleve AGAIN. Which I have been doing. And I have to go to physical therapy and go back to him in 12 days(March 12).
So, if you have any advice or you agree with something I listed let me know. Please try and help me. I really want something done. I don't know what to do next or what to say to him. If you can help me, please do so. I thank you in advance for your help. And thanks so much for reading this, I know it is long, but I wanted to be as detailed as possible. I would really appreciate any advice. Thanks! Christi
[ 31. March 2007, 03:55 PM: Message edited by: wilsongal22 ]
Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Christie, You are extremely articulate for a 15 year old!! First, I am so sad to hear all the pain and struggling with the diagnosis.
It is not uncommon with lyme disease. If your doc has ruled out everything else (which it sounds like he has), then it is time to find a lyme doc and have your blood tested by better labs.
Another diagnostic test for lyme is to see how you react to antibiotics. If your symptoms get worse on them, then lyme is stronly suspected due to the herx reaction.
Chronic Lyme is a multisytemic, multisymptom illness. there are not many other illnesses that do this (affect several body systems).
Keep advocating for yourself---I can already see you are gonna take charge by the tone of your post.
You will get well... Kim
-------------------- We are spiritual beings on a human journey...
posted
Thank you very much. That is true. I think they have all ran out of stuff to test for! They just don't know. I think that is why they don't take me seriously. Because I keep coming back, and they don't know.
The 'herx reaction'? Hmmm...that means I haven't done all of my homework. I have read some things that say that, but I didn't know what they were referring to. I will be sure to look that up.
I read a lot. I like medicine and I enjoy studying it and learning more about it. I have learned a lot in the past ,say, year or year 1/2. I am constantly searching and reading about things that I 'could' have because I know it is real. I wish I could take charge. But, as a 15 year old, it is hard for people to take me seriously.
They think I just look up stuff and automatically assume that is it. I have done most of my homework...I narrow things down as much as I can. I learn everything I can and spend most of my time on the internet educating myself. It has been a year 1/2 and I have read about a lot. I have learned a lot.
I do believe that it could defiantly be lyme. I have a lot of the symptoms, a lot in common with it. I just don't know. Thanks so much for the advice. I will read up on the 'herx reaction' thing. Thanks so much! It means a lot. Christi
[ 01. March 2007, 06:06 PM: Message edited by: wilsongal22 ]
Posts: 306 | From Alabama | Registered: Feb 2007
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for that ASO test, there is a condition called PANDAS which is apparently an abnormal reaction to strep bacteria.
also there is a group called the roadback foundation which believes conditions like Rheumatoid Arthritis are caused by a type of bacteria called mycoplasma and they think that the treatment should be long term low dose antibiotics.
there is also a Dr Nicolson who believes that a big portion of Chronic Fatigue Syndrome is caused be these same mycoplasma. he has a different treatment regimen that includes higher doses of antibioitcs that you rotate. also he has many secondary treatment suggestions.
look at his site under the "treatment section." one of the first few papers is his treatment outline.
finally, there is chronic lyme. the treatment guidlines are similar to Dr Nicolson's. check Dr B's treatment regimen for Lyme. that has pretty much all of it.
you will also need to see an LLMD. so if you post what region of the country you are in, someone near you will send you a list of DRs near you.
i know there is a neurologist in CT that is having alot of success with IVIG for the arthritis part of Lyme, but that would be in addtion to the antibiotics.
if there is any info here that you need more on, let me know.
thanks bill
Posts: 127 | From MA | Registered: May 2004
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posted
Ok, thanks. I have heard and looked into PANDAS. And I live in the southeast United States. Alabama to be exact. So, would you say that you think it is Lyme? About 7-8 people have told me it sounds like Lyme. Or they say my symptoms sound like the ones they or their children with lyme are experiencing. Well, thanks a lot for the advice. Thanks! Christi
Posts: 306 | From Alabama | Registered: Feb 2007
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posted
I had a hard time reading your posts because it's all in one long paragraph. Please write future posts in SMALL paragraphs. Thanks!!!
Did you say you'd ever had a tick bite?? Not that it matters that much....you could have gotten Lyme other ways or from childbirth if your mother had it.
I would suggest finding an LLMD right away and get evaluated. The regular tests out there miss most of the cases of Lyme.
Igenex Labs is one of the best labs to be tested through.
posted
Oh, I am so sorry. I was just caught up in getting my story on here. Everything just sort of flowed out at once. I will remember that in the future!
Ummm...I live out in the country. Around woods, fields, pastures, and other stuff. There are a lot of ticks around here actually. I have been bitten by a tick before. More than once. Ticks are common here in the summer time, but I don't think the people here are really aware of Lyme disease. I have told several people and they ask me what it is. So...yea.
Thanks for the advice! I will be sure to look into it. Thanks so much! Christi
Posts: 306 | From Alabama | Registered: Feb 2007
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posted
I forgot to mention one more thing. I don't know if it plays a role at all, but it is weird to me. Ok, I can't sit criss cross. My right leg from my knee down goes completely numb. It is worse starting at my foot working its way up. I can't feel my toes when I move them. And it starts feeling kind of cold-like. I don't know if it goes further than my knee because I usually get up because it is very uncomfortable. But, I am sure it doesn't. When I stand on it it hurts some and has a terrible tingling, pins kind of feeling.
I am not sure if this counts as anything, but I never know when something can be helpful. It could mean something. Or not. But, it is really strange.
Thanks again for all the help. And the advice. Christi
Posts: 306 | From Alabama | Registered: Feb 2007
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-------------------- Hugz, Tugz and Health to you! Greg/bubbear http://centralfloridaresearch.com Treasure the love you receive above all. It will survive long after your good health has vanished.Og Mandino Posts: 109 | From Central Florida | Registered: Mar 2006
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posted
Oh my goodness...the scariest thing just happened to me. I was telling about me sitting criss cross... I was sitting criss cross while writing that and when I got up I couldn't stand up. My leg just like folded. And I couldn't stand on my right leg.
That hasn't before. Usually it just comes to and it is very painful and when I move my leg is hurts really bad. It has a tingling, pins and needles sensation.
Then, eventually it goes away, but it hurts for a while and tingles. The back of my knee jurts really bad until it finally goes away.
This was really scary because I couldn't stand up. I like fell and it looked like my leg folded into jello. It was very strange. Ok, I thought I would add that since I have never experienced it before and it was so scaring. Thanks. Christi
-------------------- 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
Yea, you could say that. I thought it was rather strange. Well, scary and painful as well, but strange.
How can I go about getting a doctor if I am only 15? No one takes me seriously. I have told people and they don't seem to care or really believe it. Because they haven't heard of it here, but it is here. It is one of those invisible conditions that no one really realizes is there.
I can't do anything about it. I try. Well, if only I were older.
Thanks for all the help. It means a lot that people some where care...thanks. Christi
Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Ummm....well, this isn't what I expected so far. I have heard that so many people would respond to my story, but that really hasn't happened yet.
I would really appreciate any advice, support, opinions, or suggests. Anything. Do you agree? Disagree? Have your own opinion? Please share it.
Thanks so much for the info so far. It means a lot that someone out there is listening. Thanks so much. God bless. Christi
Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Talk to your parents....They can help you find the help you need.
-------------------- Hugz, Tugz and Health to you! Greg/bubbear http://centralfloridaresearch.com Treasure the love you receive above all. It will survive long after your good health has vanished.Og Mandino Posts: 109 | From Central Florida | Registered: Mar 2006
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posted
Actually, that is really hard for me to do. I have never been really comfortable talking about anything. I have said more on here than I have to my parents or to anyone else. It is just I have never had any problems before. I have never had to go to my parents for anything. Not like this.
It is hard for me to tell them everything. I don't know why. I have just never felt that connection or comfortable with them. I can mention stuff to my mom, but she isn't the sharpest tool in the shed if you know what I mean.
She doesn't mention what I say to the doctor. She just thinks I am overreacting or something. She doesn't take what I say seriously.
And my dad...well, i don't know what to say about that. He read some stuff on here that I have written and he didn't like the part where I said my parents aren't behind me and stuff.
I argued with him and that's when I shifted into 'mood change mode'. I get angry and just walk away with an attitude and say whatever.
I walk away and they get mad, but it is because they won't listen to me. It just doesn't feel right talking with them about stuff. I don't know why. That's why I wish I were older. I could deal on my own. And do everything myself.
I would find the doctors I need and tell them what I think and ask for the tests and everything. I would push them for an answer. But, I can't. This is the part where I go into 'depressed mode'.
I wish I could. I want to so bad. But, I can't. I read stories on here where doctors don't believe these grown people, why would they believe me? Or even take me seriously? I would think I watch to many doctor shows.
(Which I do, but that is beside the point.) I actually researched it all. I have other peoples opinions who have been threw the same thing. That's what makes me believe it. But,they won't.
I don't know what to do. I don't know what to say. I am so sorry and I wish I did and I could. I just don't think it will happen.
Well, thanks so much. Please continue and put your input. I really appreciate it. Maybe someday it will happen for me and they will realize it. Thanks so much. God bless. Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Don't give up. Keep writing to us and we will try to find a way to help you.
I agree that it would be difficult for a 15 year old to get medical treatment without an adult's help.
Since you say it is hard for you to approach your parents about getting a diagnosis, could you perhaps talk to a guidance counselor, a teacher, a friend's mother, a coach, or someone like that who might listen?
Then that adult might help you discuss it with your parents.
You could print out this series of posts, since you have outlined your experiences so beautifully, and the adult could read it.
Do you have a pediatrician or just the orthopedist who has not helped you?
Elizabeth
Posts: 156 | From MA | Registered: Jul 2003
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bettyg
Unregistered
posted
welcome, i'm sending you a PM, private message, with my 46 pages of newbie links, advise, symptom list,
you need to have a western blot igm and igg blood test done .... read about it in area you see IGENEX listed. bedtime here.
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First I want to say, I admire your resourcefulness in researching what is going on with you. And if you have a sincere curiosity about medicine, please study your science courses, do well and perhaps go to college and develop a career in medicine.
We need all the curious people we can get in the medical fields. I sometimes think the problem with the doctors who don't help us, is that they have lost their curiosity. They don't want to find out what they don't know. My opinion.
Second, using your resourcefulness, can you devise a strategy to communicate with your parents in a way that works? It may take a bit of invention, and a bit of strategizing on your part. Think about how they *do hear*, and then try broadcasting your SOS on that frequency. Apparently their "radio" doesn't pick up your current broadcast frequency that well.
It does sound from your dad's reaction that he does *want* to help, and that's a good sign.
Can you look into finding a Lyme literate doc, or another doc who is willing to run the Igenix Western blot test for you? It might be good to have a ready answer, if they do decide to help, that you say, "this is what I need, this is who I want to see."
Of course, as you'll find out, the IGeneX wester blott test can detect Lyme, and it's one of the best tests for detecting Lyme, but it sometimes gives false negatives. That is why it would be most helpful for you to get a Lyme literate doctor, who can sort out the situation.
Financial issues may be part of the equation as well. Insurance may not cover the doc, or the tests, or only cover part of it. Please know that being on your own would likely mean trying to do this with no money and no insurance.
Your parents are a resource to you, and they clearly want your good health as they have been taking you to see doctors, but just like the rest of us, there is a period of going to the *wrong* doctors, doctors who don't know what going on with us, really, or can only diagnose the symptoms of our illness but not the cause.
I suppose you've heard to avoid Infectious Disease Doctors. I hate to generalize, but it seems like they don't believe in Lyme, except in very specific acute infections and when there has been a rash.
I can't really give an opinion about your symptoms. Lyme is multisystemic, complex and different from person to person.
good luck,
Karen
Posts: 112 | From RI | Registered: Jan 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Christi,
I agree with the other posters that you need to find a Lyme Literate Medical Doctor in your area.
Print out a Lyme check list. As Lyme symptoms come and go and change a lot, check off every symptom that you have had...not just the current ones.
I remember being 15 yrs old and thinking my Mom (who raised 3 girls by herself) wasn't the smartest tool in the shed either.
It wasn't until I left home and went away to college that I could truly appreciate my Mother.
Talk to your parents. Show them the checklist. Ask them to get you an appt. or at least a Western Blot from Igenex lab.
Be honest and truthful about your symptoms with your parents. They can not help you if they don't know what is going on with you.
When I was almost 18 I had gone out with my friends. Will admit I had some alcoholic beverages (legal drinking age was 18 at that time).
Got really sick. My mom was furious with me as I was underage and now home from school.
However, she did take me to my doctor when I progressively got worse. Couldn't hold water down.
Guess what? Hepatits A that was aggravated with alcohol. I was about 8 hours away from death from dehydration when I was admitted to the hospital.
My mom was mad, but her first priority was my health.
Your parents love you. They may not understand you or you them, but that is a typical relationship between a teenager and their parents.
Again, be truthful and honest. Express your fears and knowledge re: Lyme and past history of being bit by ticks before.
I live in La. I don't recall a tick bite, or a rash, but do have Lyme (as does my neighbor and possibly my husband).
I also live in the country where there are deer, mice, cayotes, owls, wild turkeys, bats....etc.
I went through many specialists trying to get dx. with something.
Most people around here don't know what Lyme is either. I really didn't until I was infected.
If you need to, print out the Lyme info and have your parents read it along with your symptom check list.
You need their help to get help. Remember, even if you don't feel like it all the time, you are their child. They love you.
Sending you positive thoughts and prayers.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Christi, do you know anyone in your area who has been diagnosed with Lyme Disease?
My thinking here is that if you know or could meet someone personally, perhaps they could act as an advocate for you when it comes to talking about this with your parents.
It's just a thought.
Boy, I sure wish I had as much on the ball as you do at 15 years of age!
Tracy
-------------------- 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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posted
Thanks a lot to everyone who has responded. I really needed that.
I am not good with approaching adults with my problems, but I have beed progressively pushing my mother on the subject. I tell her the new stuff I learn each day and how it relates to me and lyme.
Even if I don't have it, I relate to it a lot. And it is worth trying. Seeing as we have tried everything else.
I stay curious about medicine. To me, it is the most interesting thing in the world. How different everyone is. How they have their own personally. Their bodies are all so different. Yet they look so much alike. How even the tiniest thing in the body can make such a huge difference, To me, it is so amazing at how everything in the human body can work together to form life. How different life would be if only one little gene were missing. It is incredible.
I don't really have a pediatrician. I do have the orthopedist that I go to. Whom asks like it is just nothing. Just because he twists my leg every different way and it doesn't hurt. Doesn't mean there isn't nothing wrong. I mean I have pain. Not from turning it this way and that. Just pain whenever, wherever.
I know my parents want to help. But, they are kind of with the doctors. They don't know what is going on. If anything is. They, like me, don't know how to keep going about everything.
I tried looking for a doctor, but I don't kow what to look for. I have been to an Infectious Disease Specialist before. I haven't heard to stay away, but I probably wouldn't go back seeing as he couldn't help me the first time.
I did print out the ckeck list and circle the symptoms I have or had before. I think it was like 22/75. I think.
"I also live in the country where there are deer, mice, cayotes, owls, wild turkeys, bats....etc" I am the same way. I live in the country. I stay outdoors a lot. Or I did. I don't really anymore as much as before. But, I used to walk threw field and threw the woods and everything.
There is this one field were we made a dirt-bike track. And every summer around the same time. It has tons of ticks. You can walk down one of the trails and have 5 of them on you. I don't go threw there anymore because I am like phobic to ticks and thing like that.
I don't know anyone in my area who has lyme or has had lyme. I don't think most people even know what it is. Or how you get it. I wish I did. It would be easier for me to talk to them. Because they would understand.
"Boy, I sure wish I had as much on the ball as you do at 15 years of age!" Thanks, I actually get that a lot.
Well, I think I answered everyone. If I didn't just let me know. I will gladly go back.
Thanks so much for all the advice, help, and support. It means so much more than I can put into words. So, thanks! God bless. Christi
Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Well, therapy went well. /he had me do some exercises and then put electrodes on my knee with an ice pack. I to go twice a week.
-------------------- 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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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Christi--
Its hard for anyone to get taken seriously by Most doctors -- and even harded when you are so young --Just keep trying --
Also remember that just like this is the first time that you are a teenager this is the first time that your pairents have been parients --
It sounds like you have Your act together-- So it looks like you are going to have to Help your parients Help You --
Maybe try to get a Teacher or councler at school to help you in handling the problems that you are having getting help from your pairents --
New subject--
From the symptoms you mention so far you Do sound like you have Alot of the most noticable symptoms of lyme and or co infections --
Also the Leg crossing thing is a symptom of Babs --
I hand very similar type of Leg crossing symptom that I had for many years --
It almost completely dissappered after just 2 weeks of Babs treatment --
I think doctors have not fully reconized this symptom because patients have a Hard time discribing it Clearly to there doctor ect --
If I had not gone threw it myself and had such Quick reliefe of this symptom-- I dont think it would have been so clear to me --
Also you have seen the TV comericals for RLS--Resless Leg Syndrome--
One of the Main ingreadents in the meds for this is Quinine --
Quinine is used to treat Melaira (spell) and for Babs Babs is a Very close relitive of Meliara
One thing you can try is to get Tonic Water-at your local store--
Tonic water has a small amount of Quinine in it and Amazingly it has helped me Alot-
Reliaze that the Tonic Water will make you Herx--
A herx is caused by the Die off of the different germs bugs ect that are in your system --
Usually a herx is discribed as a increase of your symptoms and sometime new symptoms will appeare--
Even tho they are painful and No Fun at all Herxes are a Good thing --
Herxes will happen Most anytime that germs -bactira -parisites and things like yeast infections (Candida)- Die off --
Basically when the bugs die they spill out a bunch of toxins --
The Toxins are what make you feel worse --
Unfortinatly its one of those No Pain No Gain type problems --
Also Realize that the the tests for lyme and co infections are perty much Usless at this point in time --
The most accurate is the Western Blot(WB) The test is fairly complacated and each lab has there- Own Way- of doing the test -
And the medthodes of the labs Very Alot- much more that you would think --
Many Many things can also sque the test results --
So Dont put much weight in your disisions on the results of these tests --
From what you have written -- I think you will be able to handle what life has thrown at you so far--
I also think that you have a Very Good chance of becoming a LLMD because of what you are going threw --
You have come to a Good place for help- Lots of Good Knowlage Here and a Vey Good group of Caring people --
Hope this helps you--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Thanks so much Jay. You have given me a lot of very good info.
I think the leg crossing thing is really weird. I sit this way while I am at my computer. Like I am now. I has become more frequent though. I used to have to sit here for a really long time. Now I can start feeling the pain and numbness in 5 minutes.
It is strange because people wouldn't think of it as a symptom. I never did. When I think back this happens a lot. The seats on the school bus are very uncomfortable because it hurts my back to sit straight up. I can't. I lean forward.
I scoot to the edge of the seat and put my knees up against the back of the seat and they get the numb feeling after a while. Anytime I put one leg over the other the one on bottom goes numb.
I thought at first it was just the weight of one leg on another cutting the circulation off the other leg. That doens't make sense to me. That part does, but it is just strange to me.
Yes, I have seen that commercial. Many times! Tonic water? Hmmm....I could try that. At least that is something I can do myself. Just as a test or experiment!
I did a lot of readin on the 'herx reaction' thing. Named after a German guy Herxheimer...doing a study on something and found that the reaction was people got worse before they got better.
Sounds bad to go threw, but at least it is a sign that you are getting better. I might try that just to see. As an experimental proof for myself! That might be interesting!
Well, today has not been that bad. I have been feeling a little better. I still have the hoarse voice(about week or 2 now) and I have been coughing still.
I went to my first physical therapy today. My therapist was really cool. He was nice and everything. He showed me exercises I have to do twice a day. The plan, he said, is to strengthen my thigh muscle to take some off my knee.
After the exercises, I have to put an ice pack on my knee for 12 minutes. Today though. He put electrodes on my knee and then covered it with the ice pack. It was a really weird feeling!
But, I enjoyed it. My knee wasn't hurting before I started, but it started hurting once the cold wore off.
I am going back Monday and Friday this coming week. And then I go back to my orthopedist Monday the 12th.(the next week).
He said my insurance won't pay for a MRI unless I have had therapy, so...maybe I will get one. I don't think the therapy will help. And I don't think the MRI will help.
When it doesn't the doctor won't do anything anymore because he will think that there can't possibly be nothing wrong if the x-ray and MRI show nothing and therapy doesn't help.
Well, thanks for the advice, help, and support. It means so much to me that I know people are reading my story and responding. Thanks. God bless. Christi
-------------------- 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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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Christi -- you do have a few more obstacles to overcome here, don't you? It seems that you have two main tasks: 1) to convince others to get the necessary testing done or to get a possible a clinical diagnosis through a knowledgable professional, and 2) to get well.
Like everyone else here I am truly amazed at your intelligence and resourcefulness. Most of us know when something isn't right. And these symptoms do not feel 'normal' to me. A 15 year old's legs should not be going numb sitting for only a few minutes at a desk!
Please continue to use your gifts by speaking to anyone who might be able to help. I like the idea of speaking to a school counselor or teacher. Perhaps you could bring some information on lyme with you and a list of symptoms you have checked off? Then both of you can approach your parents. Maybe even write a small paper on lyme and what you have learned so far.
Lyme disease, as you know, is very complex and confusing and difficult to explain. So many different symptoms that affect us in so many different and unique ways (and they can migrate, like what you described). That is why it would be so important to rally the support of another adult so that they can help your parents to understand that this is or can be a serious illness if not treated properly.
Once you are able to get a diagnosis, I am sure that your LLMD will provide information on treatment options. But also, make sure to do a lot of research too. There is a wealth of information here and the SEARCH key comes in very handy. Also... ask as many questions as you need to. There is no such thing as a stupid question when it comes to Lyme disease.
Somehow this reminds me of some books my daughter loved (14 with lyme) when she was a bit younger called "The Series Of Unfortunate Events." The children in the story kept finding themselves in worlds filled with adults that just didn't seem to quite get what was going on, or had eccentricities that prevented them from seeing what was going on. They weren't bad adults (except for the villains) just impaired somehow. Lyme disease is our unfortunate event... but we can overcome it and people's attitudes surrounding it... we just have to be very clever, which is an asset you clearly have.
Please stay connected here.
Claire Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Can anyone think of anything else I could have?
Thanks. God bless. Christi
-------------------- 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 just did my therapy exercises and now my knee is blood shoot from the ice! It looks like a big red rash!
But, I have a slight earache now. And I have been borderline headache all day today. I have been feeling kind of tired today. I keep waking up early. Normally I sleep in when I can to catch up on my sleep I lose from school.
But, this week I have been waking up anywhere from 4-8A.M. Which is very unusual for me. I am not tired at night though. I just get bored so I go to bed. But then I wake up early and try to go back to sleep, but can't.
To me it is quite unusual. I have been feeling kind of tired-sick today. Like I am going to get sick to my stomach, but I don't. I have been feeling like I am walking around the house in a tired-like trance.
I also felt one of my muscle twitch things. And, my lower back has been hurting. It isn't that bad standing up, bu when I lay down and relax my back it hurts really bad.
I have also been feeling down about a comment my mother made yesterday. We were leaving therapy and she said 'Hopefully this therapy will work so you won't have to have the MRI.'
Something like that. It made me feel bad though. My mom spends a lot of time in doctor's offices because I have 2 younger siblings. So, she is always on the go. I sometimes feel like I am putting my parents threw a lot for nothing.
They have to pay for every visit and I never get an answer. And now, I have the feeling the therapy is not going to work. I mean my knee isn't the only thing that hurts. And I am pretty sure the MRI will be clear.
That will mean more money and time taken away from my parents. With no answer. I feel bad for making them go threw so much. Money doesn't exactly grow on trees here. So, I feel bad having to make them pay for the visits, gas, time, and sometimes rental vehicles. (to go to far away docs).
Well, thanks so much so far. I guess this is my update for today. Thanks. God bless. Christi.
Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Am I wasting time? I mean I go to the doctor for my knee hurting and he tries to treat that. But, if my pain comes and goes all over he is wasting his time.
Right?
I am also wasting time. And money. I has one of those nights again. I cried myself asleep thinking about everything. I finally realized that I am not being honest about the whole thing to everyone.
I am wasting so much and gaining so little. My parents know that I hurt all over, but they never mention it to the doctors. We just go for one thing and they try to treat it.
They could help me more if they knew everything, but then they couldn't help me because they are not the doctors I need to be seeing.
Should I get the MRI if he tells me to? Just in case or should I not bother? I figure it is a waste, but it COULD show something, right?
I am just very confused now. I don't kow what to do anymore. I know I need to speak up. I have spoken up, but only half way. I wish my aunt would call. I haven't gotten up all the courage yet to ask her, but I know I have to when I get the chance.
When, does anyone else have any ideas on what else could be going on?
Thanks for all the help so far. God bless. Christi.
Posts: 306 | From Alabama | Registered: Feb 2007
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Hi Christi!
No one can say for sure what you might have, because it would be against the law for us to try to diagnose your illness.
We can only say that your symptoms show a pattern that seems like the pattern of lyme disease. Jay did offer a possible scenario. Babs is short for Babesia. It is one of the co-infections that sometimes comes with LD. It is similar to malaria, and therefore is sometimes treated with malarial remedies.
It would be best for you to see an LLMD (Lyme literate medical doctor) to make that determination. If it is LD, than you might well be wasting your time with these other treatments. You might go to the DOCTORS section and post a request for names of good LLMD's in Alabama so that you can have some ready resources for your parents.
I have no experience with MRI's so I cannot offer any personal experience. Igenex seems to be the favored test by most members here to determine whether lyme is a problem.
We don't know why illness shows up like this sooo unexpectantly for some of us. But it is not like we invited it in. Please don't feel guilty. You did not ASK to be sick. We know that for sure, with all of your athletic activities that you were involved in. Tick-bite illnesses are on the rise!
It is true that LD can be somewhat expensive to treat. Very unfair and 'unfortunate.' But there may be some less expensive treatments that an LLMD could go over with you. Also, please do some research here. READ the success stories under GENERAL to see what helped others get well. Do research in medical for that information as well by using the SEARCH key. This is where your resourcefulness can really play a part.
I know this is scary because you don't want to burden your parents. This is a sign of a very thoughtful child. Still a reality exists and you need to be able to get on with your life, and back to normal activities that you are sooo entitled.
Claire
[ 04. March 2007, 09:16 PM: Message edited by: clairenotes ]
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Thank you very much. I know no one can diagnose me. I was just hoping for other people's views and opinions on the subject. A lot of people so far have said it sounds like LD. That is good enough for me.
No one else has really said anything else that I could have. They just say I sound like LD. That reasures me though. Knowing that other people who have been threw or know someone who has been threw it say I sound like it actually makes me feel more confident.
I know there are tons of other things that sound like LD as well, but there is always a chance. With Lyme on the rise and giving where I live. (out in the country). Even if it isn't one of the main places where it is expected to be.
I will post about an LLMD in Alabama. So far I haven't met anyone from Alabama on here or any of the other site I am on. That isn't reasuring, but there is a first for everything!
I looked on the internet and couldn't find anything on LLMD's in Alabama. Hope that is not a bad sign.
Well, thanks so much so far. This has been a huge help to me. God bless. Christi.
Posts: 306 | From Alabama | Registered: Feb 2007
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I just realized something that I think could multiply my chances of having Lyme. It never crossed my mind til now.
I think about ticks everytime I walk outside, but I don't think about when I went outside before and ticks. I said I spend a lot of time outside.
My dad mows lawns. I have been helping him since I was little. For the past couple of years I have worked with him a lot. Every weekend and the entire summer.
I started having my arm pain and everything more and more about 2-3 weeks after my foot surgery, which I think is just a coincidence.
I had been working outside mowing grass and doing stuff with my dad all summer til my surgery.
Funny how that didn't hit me til just now. Hmmm....but in my opinion that adds to the list of reasons why I could have Lyme.
Anyone agree? Thanks so much. God bless. Christi.
Posts: 306 | From Alabama | Registered: Feb 2007
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posted
You know...I have thought about that before.
With some people an illness that is invisible or just not showing itself sometimes shows itself after another illness or trauma. Probably because the immune system isn't at its fullest.
I have read that people with endocarditis, it usually surfaces after surgery, dental procedures, or from a previous condition. So, other things are like that also.
Maybe whatever I have surfaced after my surgery. Before that I stayed outside a lot. I don't go out as much as I did before. And when I do go out I don't go out in the woods and stuff.
I really haven't been myself. Normally I wouldn't stay at home ever. But, now I stay in all the time. When I go out, I usually start feeling bad so...I don't go out much.
When I start having fun anytime, I usually start feeling bad as well. So, I know something isn't right.
Well, thanks for everything. It means a lot. God bless. Christi
Posts: 306 | From Alabama | Registered: Feb 2007
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posted
I am on WildCondor's Lyme Links and I have read over the master symptoms list for chronic fatigue syndrome (CFS), fibromyalgia syndrome (FMS), chronic myofascial pain (CMP) and chronic Lyme disease.
I have a lot of the symptoms. I thought I would post them for more detail. Here is a list of the symptoms I have off of this 'master list'
AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE: *Allergies (nasal, other; new, increased or worsening) *Canker sores (frequent) *Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), *chills *Low body temperature (below 97.5) *Night sweats (not related to menopause or fever) *Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature and body temperature; low body temperature (below 97.6 F / 36.4 C)
Cardiopulmonary/Respiratory/Circulatory *cough *Sighing, frequent, not related to mental/emotional state
CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC *Headaches (frequent, severe, recurring) *Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV) *Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen) *Muscle twitching *Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities *Tinnitus (ringing/noises in one or both ears)
Digestive/Hepatic * Stomach ache, cramps
EYES/VISION * Blurred vision(only sometimes)
HEAD/NECK/MOUTH *Canker sores *Dry chronic cough *Runny nose in absence of cold, allergies
Musculoskeletal *Arthritic pain that migrates from joint to joint *Carpal tunnel syndrome *Joint aches (arthralgia) *Joint pain, without redness or swelling *Muscle aches (myalgia) *Muscle pain, stiffness, weakness *Stiff neck *Writing causes pain in hand, arm shoulder
PAIN SYMPTOMS (I have all of these) *Abdominal pain *Chest pain *Generalized pain *Joint Pain *Pain that migrates from joint to joint *Pain/stiffness at C1-C2 (top two vertebrae) *Shooting or stabbing pains *Painful tender points (FMS: 11 out of 18 tender points)
PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS *Abrupt/Unpredictable mood swings *Decreased self-esteem *Depression or depressed mood *Feeling helpless and/or hopeless *Feeling worthless *Frequent crying for no reason *Helpless/Hopeless feelings *Inability to enjoy previously enjoyed activities *Irritability; over-reaction *Personality changes (labile, irritable, anxious, confused, forgetful *Rage attacks; anger outbursts for little or no reason
SLEEP SYMPTOMS *Altered sleep/wake patterns (alert/energetic late at night, sleepy during day) *Difficulty falling asleep *Difficulty staying asleep (frequent and/or prolonged awakenings) *Unrefreshing/Non-restorative sleep
UROGENITAL/REPRODUCTIVE *Other symptoms worsen before start of menstruation *Worsening of PMS
OTHER *Activity level reduced to less than 50% of pre-onset level *Changed voice *Handwriting changes, altering signature and/or other writing *Hoarseness *Sore throat *Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
Well, that is an entire list. Broken down! Well, according to the list I have a big chance of having one of those. I don't think I have CFS or CMP. So, that leaves FMS and LD. Well, that narrows it down some! Not really...there are still so many possibilities.
So... I don't know what to say now. Thanks so much. Thanks for bringing Lyme to my attention. You guys have opened my eyes to more possibilities and have encouraged me to do more for myself.
For that, I thank everyone on here who has helped me! Its mean so much to me that I am not the only one who cares about myself and does not think I am crazy! Thanks! God bless. Christi! Posts: 306 | From Alabama | Registered: Feb 2007
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Christi, I just sent you a Private Message.
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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Thank you so much. I have not been able to find a LLMD anywhere in Alabama! That is defiantly a start! Thanks so much. God bless. Christi
-------------------- 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 just back home from physical therapy. It went well. I had to do the exercises longer and added 2 new ones.
The weird thing is that while I was doing my exercises I started having this tingling sensation on the side on my knee. It kind of felt like the sensation I get from the electrodes they put on after I do the exercises. I am still having the tingling though.
It is not constant, but comes and goes every couple of seconds and only last a couple of seconds.
Could it be related to the exercises or could it be another symptom to add to my list?
Also, about the numbness in my lower leg while sitting criss cross, it is not just while sitting that way. It happens anytime I put my up. Like if I sit with my legs just plainly crossed. Or anything like that.
I am starting to worry that whatever it is is getting progressively worse faster. I have been experiencing more symptoms(what I believe to be symptoms)lately. I don't know if it is just that I am parinoid about the whole thing or not.
But, I am starting to go threw new things more often than before.
Well, I guess that is all I have to say for now. Thanks. God bless. Christi
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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I have been feeling more tired lately. It is 8:30 P.M. here and I have been dozing since about 7. I usually go threw this phase. Sometimes I stay up really late because I am so awake and active.
Then, I get up early. But then sometimes I go threw the phase were I wake up more tired than when I went to bed. I stay tired all day and when I get home from school at 4 I am so tired I will go to bed then.
I usually go threw these phases a few months or less at a time. It is horrible though because I started going threw the sleepy stage a few days ago.
It is hard with school. I have work I need to get done, but I am to tired to do it. And then I get up really early and it is so awful.
Does anyone know a way to get out of these phases and just sleep in a normal pattern?
It bothers me so bad because I stay sleepy all the time and it starts to annoy after so long. I never do anything during this phase because I am so tired and just go to sleep and stay in bed a lot.
Thanks. Please help! God bless. Christi
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Well, today has been really tiring. We are having graduation exams this week and they are draining my sponge. I have been more tired than usual.
Also, I am still having sleep disturbances. I keep waking up and I can't go back to sleep. And I stay tired.
Also, my knee is still hurting really bad. I am more sore now because of the physical therapy exercises I have been doing. And I have been taking 2 Aleve in the morning when I wake up and at night sometimes before I go to bed.
Of course, it has NOT helped. I go to the orthopedist Monday. And I have therapy again Friday. I think that is the last time. Boo...I like going to therapy! I think it could help some if I could keep going.
I am trying to strengthen my leg muscles to take some pressure of my knee and I think it oculd help if I kept going longer.
Well, that's the update for today. Please giving your opinions...there is only a CHANCE I could have lyme. What else could I have?
Thanks for the responses! They mean a lot. Thanks so much. God bless. Christi
Posts: 306 | From Alabama | Registered: Feb 2007
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Christi, have you ever been checked for an active Epstein-Barr virus infection or mononucleosis?
Many of us have EBV as a co-infection. EBV is the same virus responsible for mono, and your fatigue and disturbed sleep could be a symptom of EBV/mono.
There are some shcools of thought that attribute a lot of joint problems to EBV, as well.
I think just about any lab or doc can run a decent test for EBV/mono, but if I'm wrong, somebody here will have to correct me on this. And I don't think the test is very expensive.
It certainly might be worth looking into, although since it is a virus, your doc will probably tell you that "it will get better in about a year". That's what they told me. And the fatigue did get better, but not all my other symptoms. I'm sure that Lyme was a player back then, but I didn't realize that until years later.
Maybe someone else will add their input here.
Tracy
-------------------- 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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Yes, I have been checked for mono before. I went to the doctor once because I was having headaches and I had been tired a lot and thats what they thought is was, but I was negative.
She told me it was just stress. That was at the begining of everything I think. And I have been checked several times since then.
Thanks though. I haven't really thought of something like that. I don't know about the EBV thing.
Thanks for your opinion. It means a lot. And no one has told me that yet!
Thanks so much. God bless. Christi
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
So what do your parents say now? You've gone through a lot with doctors, but don't mention your folks much.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Well, thanks for bringing that up. My parents took to me to wherever I needed to go, but they were as stumped as the doctors were. The doctors said there was nothing wrong. So, my parents believed them.
I guess they probably knew something was obviously not right, but the doctors couldn't find nothing.
I don't think my mom realizes that there is something wrong and it is something to worry about. My dad was kind of the same.
I started getting on wrongdiagnosis.com about 2 weeks ago and told my story. I got a lot of replies with different things. One day my dad knocked on the door(because I keep it locked, not for anything bad, just a habit) and he said I know abouyt your little website thing.
He had read my story on my computer. All he said was that people said some interesting things. And he asks me stuff sometimes about it, but thats about it.
I have been mentioning everything to my mom and I think she knows something is wrong and she is starting to wonder. Because I have mentioned Lyme, Fibromyalgia, Hypothyroidism, and Endocarditis. And I think that kind of scares her.
So, I think they are coming around the more they learn about me.
I have changed a lot since all this started. I used to be very active, outgoing, crazy, athletic, and talkative. Now I had to quit all my sports, I don't have the fun personality I used to, and I stay to myself a lot.
I hate being in groups, crowds, anywhere that people are. I don't like to talk much. I usually dont and people are like 'I could never not talk' and I just think well 'I thought that at one time to.'
I just don't have the urge to talk. I don't care to mention stuff or speak up. I hate being in crowds because I feel like everyone is noticing me and staring or something. Just a feeling I don't like.
I can't stand being in a room with a lot of people. I hate being in the middle of a group of people I have to be on the outside. Which is one of the reasons I hate school so much.
There are to many people and I don't like that. I have been trying to get my parents to let me be homeschooled for about year 1/2 now. That way I can do my work on the computer.
I don't care to sit in my room 24/7 by myself not talking. I can get my work done faster and have time to do stuff.
I know that is weird, but I didn't used to be that way. I used to be very out there and crazy and funny and I was just want I wish I were still now.
Well, for today, I have noticed here lately more cold-sensitivity, my cough now hurts my side really bad. And I have been just really weird lately. Like I know in the back of my mind that something is wrong and I am not doing anything about it.
I have just been having this strange feeling like something big is going to happen and it is going to bring everything out in open. So, everytime I get a pain or something I am so scared that it is going to turn into something and it is going to be bad.
I mean, eventually something bad is going to have to happen. Unless I do something about it. I know sooner or later that whatever it is is going to have to get worse. It is going to progress. But, I wish I could do something first. I am afraid that when it does happen it will be to late or something.
It will be harder to get over. I just don't know. The other side of me wants something big to happen to remind everyone that something is really wrong. That way someone might actually believe me.
Well, thanks for the replies and keep them coming. They mean a lot. I need all the help I can get. Thanks so much.
Well, if you have anymore questions let me know.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Well, today has been very tiring. We have had graduation exams everyday this week and I am drained. I felt ok til I had to go to therapy then I felt really sick.
I was out-of-it so to speak. I felt weird, dizzy-like. I was really quiet and when I walked in the lady greeted me, but I have been hoarse so when I tried to talk I couldn't.
She asked me if I was having a bad day and I said 'No, I am just tired from school.'
I went on to do my exercises and I was very quiet. The same lady came back there and wthey were all talking. She came to me and asked if I were ok because my cheeks were really red.
While on the stepping machine I felt like I was going to faint. I couldn't keep going so I didn't get very far. I was really tired and felt really bad. I started getting a headache.
I am very quiet all the time for some reason. I am normally not like that. But, while there I didn't say anything. They probably think I am really weird or something, but honestly, I just didn't want to open my mouth because it felt like I couldn't.
Has anyone else experienced not wanting to talk? Just like not caring to say anything?
I usually don't even listen to people talk. I am like in my own world. I think about stuff constantly and never pay attention to anything else going on.
I find that weird. Compared to what I used to be.
Also, the other night I was at my computer and my 'left' leg went totally numb and I couldn't stand up at all I would stumble and fall over. It is such a weird feeling to not be able to stand and feel the floor.
Well, thanks.
-------------------- 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
Ok, hey, today wasn't very good. I went to bed last night about 10:30 or so and I was so tired. I didn't wake up until 1:30 when the phone rang.
I was to tired to get up. I just kept rolling over trying to go back to sleep. I would doze off and on until about 2 something.
I couldn't sleep because of the tv being to loud. I almost didn't get up. I felt to tired to get out of bed. I didn't even want to move.
I am still coughing, my side hurts when I do. It has gotten a little worse. I have been having allergies. My nose is running for no reason. And I have been wanting to go back to bed since I woke up.
I have had a little headache on and off since I woke up. I have been feeling a little sick or something. Kind of irritable. I am really tired for some reason.
How come my numbness only happens like when I sit criss cross or with my legs crossed?
Anyone else have lyme that has numbness? What is it like and when does it come on?
Well, right now I am sitting on a foot stool and my feet are tingling. That has never happened before. They aren't even crossed.
They only go numb or tingly when I am sitting down. That is weird.
Sometimes I have numbness in my hands and I don't cross them or nothing! It just happens.
This morning something really bad happened. I was cleaning my shoes with my right hand and when I stopped I got this very bad muscle cramp like pain in my shoulder. It was horrible. It hurt so bad.
It is at the top of my shoulder a little toward my back. It hasn't hurt as much since then, but it hurts a little when I press on it. I held on to it when it did that and I almost cried.
It was very very painful. I haven't ever experienced something like that. Not that I can remember.
BTW, that was a really good episode of Mystery E.R. that is one of my fave shows and I never miss it. I didn't know it was going to have a lyme story on it.
When it showed her and was telling her story I started thinking about lyme. That is very sad that she suffered for 10 years. Doctors should be better than that.
I thought it was really good though because it mentioned the co-infections and everything.
Thanks.
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Christi, I am not a Dr so do not take anything I say as such.
Lyme and other such bacteria are considered neuro toxins. All neuro toxins do pretty much the same thing to the body. Even break down of meds can become toxic.
Some are heavy metal exposures such as mercury, lead, aluminum, etc. Some may be pesticides. Or illegal substances probably also make the list. But one we deal with at our house daily is Mold. It is very toxic to many. My daughter also has the genetic factors that mkke her more susceptible to it and other diseases.
Most people are not aware of Mold being a problem because current DRs are versed in it even less than they are in most Tick Borne Diseases.
Make sure you do not have any leaks in the house and make sure that someone is doing something about the humidity. In Alabama, I am assuming it is a constant problem.
There should be many posts in the archives on Mold and Neuro toxins. You could also search Gigi's info, it may be useful in regard to neuro toxins and also check out the web site of chronicneurotoxins.com
To be honest, many may not be posting because you seem wiser than your years and there have been many "trolls" on here trying to dig up info to perhaps use against some of the LL docs.
There used to be a poster, Kara, she was from Alabama. She may have some posts in the archives that may be Alabama specific. She often hung out in Off topic so that won't help much. It was often with conflicts and not too Lyme specific.
I think she either gave up from some of the arguing that sometimes happens or she was displaced from Katrina and never back on. We have missed her.
Understand that most Drs do not have as much knowledge about this as you do and they have been fed questionable info on how to test, treat or cure it. Parents often do not question Drs, I didn't for a long time but when the suicide attempts continued, I had to become a mother panther.
Good luck.lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I see what you are saying. I never thought of mold or neurotoxins, thanks.
That's crazy! That people would not post just because I seem 'smart.' That is such a shock. I just want people's opinions. I mean I never thought of mold or neurotoxins or heavy medals.
People on here have informed me on that. Not to be 'a show off' or nothing, but I have been told that I am very intelligent. But, people should not fear that.
I just look up stuff. And read a lot. I like medicine and I want to be a doctor. That is what I am interested in so whatever I read sticks very firmly. I am sorry I seem to smart to be 15. But, that should not stop people from helping me.
I like to be knowledgeable and know what I am talking about.
I am just wandering, but what comments make me seem 'to smart for my age?'
If my 'smartness' bothers anyone I can try not harder not to be, but I didn't think that would be a problem.
I have a hard time showing people I am smart because I (used to be) crayz and fun to be around. Now I walk into class and I am silent. I make really good grades and listen. I never get into trouble and if I did I would cry for forever.
People don't know me for me...they know me as the smart girl they want to sit by so they can cheat off me.
I am like known as the 'sponge.' Because I can listen to something someone says and I could repeat it word for word. I soak in info like it is nothing.
That's how I make good grades and learn. I never talk because I just don't feel the need to. So, I have a lot of time to listen. When I do, I soak in everything.
I am so sorry that people feel they can't post just because I 'seem to smart for my age'. I take everyone's opinions and run with them.
They mean a lot to me and help me learn more.
I am truly sorry that some people feel this way and I appreciate someone being honest with me.
But, anyways, thanks for the advice and I will be sure to look into that. Thanks so much for all the replies I HAVE gotten. And if you think you have something to tell me, TELL ME!! I want to hear anything and everything.
Thanks so much. I really appreciate. It means the world to me!
-------------------- 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 wanted to add something to lymemomtooo's post about neurotoxins and mold.
Lymemom also brought up pesticides and I remember you saying that you worked with your father cutting grass and I'm sure you have been exposed to a lot of pesticides while doing this work.
Pesticides are dangerous for everyone but especially for children and young people.
If you do some reading on the internet you can learn more about exposure to pesticides and herbicides.
Just something else to keep in mind while searching for your health.
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Christi, you misunderstood some of my post, sorry. I think it is fine that you are so intelligent..
It is just that some may think you are not who you say you are due to your level of maturity and may suspect you are an adult or even a Dr from the other camp trying to play as a 15 year old and they might be afraid to give you too much info, just in case.
Some of our drs have recently been attacked and taken to trial and potentially could loose their licenses. So the only thing I meant is that some on the board might not trust you to be a teen. I only speculate because you wondered early on why you were not getting many responses.
I am not saying you are anything other than a sick but very intelligent 15 year old .I hope you continue to research and perhaps someday you can help others with these hellish diseases.lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Thanks. I will look into that. I have not really thought of that because I don't realize when I am around stuff like that.
That's ok. I understood your concern for the board and the people on here. I am sorry that some people may think that. Also, I apologize for the last post.
I have mood changes. I get angry really easily. I don't mean to or nothing and I am sorry.
I can assure everyone that I am most defiantly not a doctor. If I were I would be helping everyone on here. I hate that I can't help and that everyone has such a problem with the doctor's not getting it right the first time.
I do want to be a doctor some day. I am different though. I realize Lyme is real and real people suffer everyday from it. It breaks my heart that so many people can be in so much pain and the 'so called doctors' won't do anything.
Also, that America or any counrty won't do anything about it. As I have mentioned many times, I want to be a doctor, but I want to be different from the rest.
I have passion, and curiosity, and determination. I want help make everyone better. I want to change the field in that people should not be misdiagnosed. Doctors should care more about the patients they see than there stinkin pay checks.
I would still be a doctor even if I didn't get paid. I would do it for free. For the sake of so many sick people out there. It isn't right.
What is also not right is America's government not doing anything about it. You know this year in my American History class we studied the Declaration and the Constituion.
In the Constitution is says stuff about who can be elected and what not. But, it also says that if the citizens feel that the government is not doing its job it can be overtaken and a new one can be established.
Personally, I don't feel the government is doing its job. Doctors should not get away with what they do. They get so much yet so many people go misdiagnosed.
I don't think it is right. It really means a lot to me that I become a doctor. For me, my family, and for everyone else. I want to help people.
I want to listen to them, and make them better. I want to stay with people for more than 5 minutes at a time. I want them to know that they are not crazy and that something is really wrong.
And I will figure it out. I want them to trust me to fix them and put there lives in my hands. I don't want people to suffer like so many do.
This day in time no one should be misdiagnosed, disrespected because the doctors don't want to mess with them, and people should not die or suffer from something that is treatable.
I know I have big dreams and I want so much out of life, but I don't want it for me, I want it for everyone whom I have the ability to help. I know it is huge, but I am willing to work really hard and to not give up for the sake of the people.
It has been my dream since the day I was born. And I do plan to fulfill it. I honestly can not see myself doing anything else. I know it will be hard, but I will do it. I will fulfill my dream, no matter what. Nothing is going to get in my way.
I have a strong opinion about medicine and doctors, and the whole medical field. I know I may not seem like a regular 15 year old 'teenager'. But, I really am. I just see the world differently than just clothes, shopping, friends, parties, or whatever else.
Honestly I don't care about that stuff. Although, I do have a myspace! But, I seldom get on it. I would rather be on here or something else. At least doing something productive rather than rotting my brain with video games and myspace or whatever.
And people may not trust me. But, I want everyone to know that they can trust me.
I am like everyone else here. I am suffering for no reason. There is something wrong and I just want to know what that something is. I am glad to have learned so much from this site and the people on it. I am going to take it and use it when I become a doctor.
I am truly only 15 and it saddens me that people can't trust that. I wouldn't lie like that. I am not that kind of person. I know it could sometimes be hard to trust people. I see that part. And I get what you are saying.
I feel bad that people on places like this have to worry about who they are talking to. This is a good place and people like that should not be on here. Unfortunatly, bad people do exist in this world. So, it is hard to trust everyone.
I am, however, very thankful that so many people have been willing to help me. I only wish my doctors could be like that.
I just feel worse now than ever. I have been taking everyone's advice and I have tried to talk to my parents.
Unfortunatly, everytime I do they end up not listening. They just walk away or ignore me. They don't think I am serious.
No offence to anyone on here, but they also believe I know way to much and it can't possibly be real.
I tried to show my mom the numbness in my legs and how I can't walk when it happens but she just walked away. I told her about me hurting my shoulder yesterday and she didn't pay any attention.
I finally figured out why they know nothing about me. I used to complain about everything. They would just get mad that I complained so much. That's why I don't complain. That is why they don't know about anything I am going threw.
They didn't listen then and they don't now.
Well, anyways, I am sorry if I went off the wrong way. Please don't take anything I said personally or nothing. I just want people to know my opinions and how I feel.
I want people to better understand me. I feel like I can fall back on people here and talk to everyone like I know them more than I can my own parents.
To me, it is very sad that the only person who realized something was wrong and that I didn't feel good was the recetionist at my Physical Therapy place!
Well, thanks for everything, and please don't think that I am angry with anyone on here. I love this place and what it is doing to help people. And I really appreciate the people who have helped me.
It really does mean a lot. And I hope people can know me for me. And not think I am something I am not. I am very sorry though. And thanks so much for everything!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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quote:Originally posted by lymemomtooo: due to your level of maturity and may suspect you are an adult or even a Dr from the other camp trying to play as a 15 year old and they might be afraid to give you too much info, lmt
Thanks for the compliment. I am mature for my age because I see the world differently than most people. And I can assure you, I am not a doctor!
What is 'the other camp'?
I was just wondering because I didn't understand what that meant.
Thanks!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Christi, the other camp refers to the Drs that do not diagnose and treat or do so with 1 pill to a possible 3 week supply or that say you need to go see a psychiatrist. Especially those that are now turning against the Drs that are treating and saving lives.
There should be a post of this in the Newbies links. Also check out some of the info on trolls so you can better understand this and not take it so personally.
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I'm the person who picked Christi up on the wrong diagnosis forum!
She had posted about a few symptoms and with me always being on high alert for Lyme, referred her to this site and canlyme.com (she's a member over there as well).
If she's a troll, she certainly went out of her way to get on this forum.
Btw, I have to stay off the wrong diagnosis forum now because I'd guess 80% of the posters with mystery symptoms that no doctor can figure out, have Lyme. I could sit and respond all day long! The number of people with Lyme symptoms is frightening.
I hope this puts some people at ease with Christi.
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
nancy, I am not accusing her of being a troll, etc . I have only addressed any of that because she initially wondered why she was not getting replys..I have tried to explain it to her and it may have been just that initially people were too busy to answer.
This is what I attempted to explain, nothing else and no accusations
" posted 01 March, 2007 10:41 PM -------------------------------------------------------------------------------- Ummm....well, this isn't what I expected so far. I have heard that so many people would respond to my story, but that really hasn't happened yet. " --------------------------------------------------------------------------------the above was from Christi.
I am trying to educate, not accuse. But it has all been taken otherwise. Good luck lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I'm so sorry Lymemom! I certainly didn't mean to make it sound like you were accusing her of being a troll!
I just thought I'd say a couple of words on Christi's behalf since I'm the one who directed her to this forum.
If I hadn't of picked her up on another forum I would certainly be cautious about her because she is very articulate for a 15 year old. And I can very well see people having reservations about her.
I'm sorry if I wasn't clear in my message. I was only trying to reasssure people with my experience with Christi so they wouldn't be as suspicious.
It's hard being the newbie as there is so much more to learn besides the disease itself. Thanks for taking the time to explain some things to Christi.
Again, I'm sorry Lymemom.
Nancy (another Lyme mom!)
-------------------- The Canadian Lyme Disease Foundation www.canlyme.com Posts: 128 | From Canada | Registered: Sep 2006
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I am sorry if I started a conflict. I honestly did not mean to. I hope we can just forget this and continue on trying to help one another.
Thanks nancy for speaking on my behalf and thanks for directing me to this site. I love it here and everyone has been very helpful.
I don't think anyone is accusing me of nothing and I did take it offensively. It is ok and I understand the curiosity. It has to be hard trusting people on the internet these days so I understand where that is coming from.
But, it is ok and I am very sorry to have made the comment I did. I know no one is deliberalty not helping me because I know everyone on here is just like me and very helpful in any way they can be.
So, it is ok and I understand. Lets just move on from here and continue what we came here for. And for future reference, I am really 15, nothing more than that!
Well, thank so much for the help. And we should not get stirred up by this. Thanks so much and you guys have become a second family for me! It really means a lot to me!
Thanks!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
Well, everyone is going to love this. I went back to the orthopedic doctor today. My dad came with me this time and I knew he would say more than my mom would. We discussed on the way about my joint pain.
When we got there we had to wait for forever. I bet him that he wouldn't stay for 5 minutes. Turns out I was right! He came in and did everything just like last time. Like he expected something to change.
He said he wants and MRI and I don't have to go to therapy anymore.
My dad tried asking him questions about my joint pain and he said 'what did the other doctor say?'
We said, well he couldn't figure it out. So, he went on about how if the doctor did the tests then it must not be anything to worry about. He was also heading for the door and my dad had to stop him to ask more questions.
He ended up in the hallway trying to walk away with my dad still trying to ask questions.
He also said that I might have to have exploratory surgery on the inside of my knee, but probably not. (I am assuming he meant if he couldn't find nothing else to do!)
This all coming from the same guy who didn't think my foot was to worry about and he did the surgery a year later! Mainly because I was only 13! I was his youngest patient for what I had! So it was rare!
Which means it could happen again! Apparently, I am not normal so...might as well. I was very angry though. I thought I was going to cry. I told my dad and everyone he would NOT help and he didn't.
I told my mom and she was like ' well, did you ask him about 'that disease'(referring to lyme) and I said no because he was out in the hall before anyone could ask him anything.
I told her that you have to go to a specialist that believes in lyme and that there are 2 in AL but they are down south which is a long drive for us.
I wish there was some way I could just call and talk to them. I would hate to drive that far and walk out with nothing again. But, honestly, I feel that is where I need to go. I think a lyme doctor would best suit me and get me rolling somewhere for a change.
I am so angry though. I feel boxed in, silenced, and saddened. I just can't believe it has taked this long and they still do NOT care.
It makes me want to smack the whole medical community. Well, I have an MRI Friday morning. It won't show nothing, but I will keep you guys informed.
I just wish for once someone would listen to me. I am very smart if they would just listen. I know what I am talking about. I think it has something to do with my age and the whole teenager thing. Adults feel they don't have to listen because they know more.
Because us teenagers spend all our time on the computer with myspace, video games, cell phones, out at the mall, hanging out, or whatever.
I am 180 the other way. I hate those things. I would much rather be in my room alone reading medical and college stuff on the net. I know, sounds wierd for a 15 year old. I get that a lot, but it is what I like and what I do.
It has been my dream since I was born. I just hope they can figure it out soon because I will be graduating in 2 years and about 3 months. Then, I am going away to college and then off to med school!! I just hope this doesn't get so bad I can't do that.
I know what things can do to people over time. And I don't want it to keep me from doing what I love most.
Well, I guess I should go. Today is my little brothers birthday and the party is about to start. I hate parties, but it is for him so...
I will keep everyone informed. And thanks so much for everything. I am sorry if I bore you with my long drueling story of my life, but...
Well, thanks so much. It means more to me than anything. Well, almost anything!
THANKS!!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Christi, I am not a dr but if I were in your shoes, I would consider some of the supplements or herbs that might help. Do a search up top in the archives.
Also try to get some good multi vitamins and eat as healthy as possible. use water and lemon to do some detoxing.
If you can get to a good health food store, sometimes they can offer some ideas.
You really need the full support of your parents to go to the llmd unless the Dr will cut you a great break. Many are very good but expensive and often insurance is not accepted.
Posts: 2360 | From SE PA | Registered: Mar 2004
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I do actually have a mulit-vitamin that I take and I have been eating healthier here lately and I have given up bad stuff like coke and most candy!
I have been drinking juices and powerade and gatorade and that sort of stuff. I absolutly HATE water!! I do know what it is, but I won't drink it. So...
I have never liked water and I hate to drink it. I don't know why I just hate it for some reason. But, I have been trying to get away from acidic drinks and such. Stuff with a lot of sugar and caffine and that kind of stuff.
I have been leaning toward healthier stuff with vitamins and minerals and everything.
I do know that llmd's are expensive, but I feel right now it is the best way to go. I think if I have a few really good reasons to lean that way it would be worth a shot.
I have went to every other doctor in this area and had every test. Well, not EVERY test obviously. And, no one can figure it out. My parents have spent so much money and time already, I just want to figure it out and make it better.
I will not say that everything has been bad. I like meeting new people. And I love learning all the new stuff I have learned. I think I could learn better hands on and talking with patients and sufferers like the people on here than I could in a classroom.
I feel you really can't understand something until it happens to you. So, I feel the experience has not all been bad. I have learned a lot, experienced a lot, and met a lot of wonderful people.
Everyone has been more helpful than I ever expected and I am glad I was invited to this site. I thought I would be doing everything myself, but it turns out there are people out there willing to help me help myself!
Thanks so much! It means so much to me that you guys are here for me and are ready to help!
Thanks!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hey Christi, there are some more replies for you on the "hair loss" conversation. Hang in there girl!
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Nancy, thanks for giving some background on Chriti's story.
Boomerang, perhaps you did not take notice that the moderators have asked us to report any suspicious posters to them and not make unsubstantiated accusations ourselves within the forum. This works better for everyone.
Christi, would Atlanta, GA be closer to you than the possible LLMDs in southern AL? There is a possible alternative for you there.
Please take time to read and get a grasp of the Camp A and Camp B problems with Lyme Disease. There are two distinct philosophies regarding Lyme in the medical community, and you will understand better why your doctors are not listening to you.
Is there any way your dad might be willing to order an Igenex kit for you (kit is free) so that perhaps ONE of the doctors you have seen might consent to drawing your blood and have you tested for Lyme?
This is the only thing I can think of that you could do right from where you are. Although there is a chance the test could be negative, if it were positive, I think you would have more credibility with your docs, your parents, etc. I think the test - 2 Western Blots - still run about $200.00, but someone else can correct that if it is wrong.
Just trying to put out some suggestions here.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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I go the Fibromyalgia and Fatigue Center in Marietta, GA (just north of Atlanta). I started going there 2 years ago after 15 years of doctors not knowing what was wrong with me.
They will thoroughly test your blood (took 23 vials on my first visit) and after those results are in, they check for hypercoagulation - thickening of blood which lyme/viruses can cause over time), then they will check for lyme using Igenex labs and the Western Blot.
They will also check for active viruses which many of us have because of lyme.
They are very thorough and I've seen quite a few sick teens sitting in there while getting my viral IV. They too are sick with lyme disease.
Its worth the trip. I met a woman in there who flew in all the way from the Cayman Islands so it is common for people to travel to these centers.
You can do a search on Fibromyalgia and Fatigue Centers and find the one closest to you (which is probably the one near Atlanta).
All of us have felt the sting of doctors not understanding or believing that we are really sick when we know something is desperately wrong.
posted
Hi Christi: My name is Paula and my 23 year old daughter has Lyme's Disease, we live in Phenix City, AL. I just briefly read over your postings but my daughter had similar symptoms for years, was diagnosed with Chronic Fatigue, Fibromyalgia, Mono, psychosis, (even a total psychotic breakdown) etc., etc. We finally found a LLMD in Mobile, AL. I have also taken a young girl from Columbus, GA there for evaluation and treatment when Emory refused to treat her because she didn't have enough positive bands on her test.
Just to let you know, my daughter did receive treatment for almost 2 years (whens he was 18) and now she is a vibrant, full-time working single Mom. We have our lives back. So many times we prayed for her just to have enough strength to walk to the bathroom or eat a meal, now she's gone to 2 years of college, works for the Sherriff's Dept and is raising her 6 month old girl.
Since I'm new to postings, etc., please let me know how I can help. I've raised money for transportation and doctor's fees and would love to see you get evaluated ASAP. Thanks, Paula
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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posted
Hi again Christi, I am assuming you are a sincere, intelligent, articulate 15 year old, i wanted to say a few more things. Obviously, you have been exposed to conditions for a tick bite, and it seems that you have many of the physical findings and symptoms that go along with Lyme, however you have not yet developed neurological symptoms of Lyme (these would prevent you from being able to express yourself so well).
I feel it is very necessary for you to be evaluated by a LLMD in order to prevent the progression of possible Neurological Lyme Disease symptoms. My daughter and I were exposed to Lyme Disease in 1993 however she did not develop symptoms for approximately 10 years (after multiple tick bites). After reading an article in Good Housekeeping approximatetely 4 years ago, I aggressively pursued a diagnosis and treatment for her. (Interesting thing is that I have worked for a family physician for over 20 years, however he did not believe me). She and I had both developed neurological symptoms including memory loss, attention deficit, depression, anxiety, panic attacks, etc. At one point I was told that my daughter would never be normal again (after the psychotic breakdown). NEVER say NEVER to a Mom.....I eventually found a local MD who ordered a PCR lab test and we were told it was negative, however found out later that they had ordered a CRP (a heart enzyme test). Of course it was negative. She didn't have heart disease.
Being informed and reading as much as possible about Lyme is great, however you and your parents together should actively seek a definitive diagnosis and treatment if necessary as soon as possible. I would be willing to help set you up an appointment with a LLMD, try to get donations for the cost of the visit and try to arrange transportation for you and, if necessary, even go with you.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
What grace! Christi... you must have been thinking the positive thoughts that Ruth suggested on another thread.
"NEVER say NEVER to a mom..." I so agree! NEVER!!
My daughter was also on the verge of a psychotic episode due to LD. She is fourteen and stable emotionally now but we are still working to get the infection down more. LD poses many different threats to our health! Definitely not something to ignore.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Hello, as you could imagine, I honestly thought about not coming back here after I read that post about me being a 'bad reporter or insurance person' or whatever. That was sorry. That was one of the most terrible things I have ever heard.
I can't believe someone would even have the nerve to say that. I only wish I could meet whoever that was in person to prove myself. If you don't believe me, I have a myspace if you what to like check it out or whatever.
I will send you my picture, birth certificate, and my permit if you need that too. BTW, my myspace is www.myspace.com/wilson_gal22 just in case you want to check it out. I was so disturbed by that comment. I don't want to even go there. It will cause me to have a 'fit' again. That made me so angry and I just can't believe that person said that.
I only wish that person could suffer inside my body and then they would know. Why would a reporter or insurance person be on here anyways? I don't understand that. We have free speech. We can talk about lyme if we want and help each other.
Can we put pictures on here? I will do that if that is what it takes. People must think 15 yr. olds are stupid and can't be sofisticated, literate, and even on here for that. That is the dumbest thing I have ever heard.
Well, I hope that person is ashamed of themself and if I were them I would never show up anywhere again. That was completely wrong.
Well, I am sorry, but I was so upset when I read this. I teared up and I was at school in front of my friends. And they called me a 'BAD' reporter or insurance at that. Sorry...
I am sorry that I am getting so carried away, but it hit home when I read that. One more person in this world that doesn't believe me. And I didn't even get to walk into their office! lol
Well, anyways, Thanks so much nancyb for putting that on there for people to read. I try to be literate and write from my heart and put my feelings into words on here so people can understand me better, but they just think I am something I am not.
Atlanta is probably as far from here as Mobile is. I have never been to either one so I am not sure. We did drive close to Mobile when we went to Florida last summer, so I think my parents would prefer Mobile.
What is Camp A and Camp B?
I am not sure if my dad would order the kit. I looked at it and it seems like the only thing I can do myself. There are several blood places I go here to get my blood taken so that shouldn'tbe a problem. I have money in my savings account that I would be willing to use if it helped. My parents aren't exactly rich. We probably couldn't afford everything.
But, if it came down to it, I think my parents would take me to a llmd if it was the last resort.
I did find a llmd in Mobile and one in some place just north of Enterprise. Someone on here sent me a list of lyme doctors and they were the only 2 listed.
That is great that your daughter is feeling better and is able to continue on with life.
I am going to college this summer for a program I am in with North West Shoals Community College called Upward Bound. And we go to college during the summer to get ahead with our basics. I hope me being sick does not interfere with it. I have been looking forward to it for a long time now.
I am scared that I will get severe neurological symptoms. I have depression and anxiety and my depression has been getting worse. I think the depression is half way caused by not being able to figure out what is wrong. And people not listening and stuff.
I do think when I hit that neurological point that people will have to take me seriously. I think that will be the turning point. I hate that it is going to take me getting much worse before people will listen and help.
Wow, you would help set up an appointment? That is amazing really. I hope that maybe I can convince people and try to get my parents in on everything. Then tell them I want to go to Mobile or wherever to see a doctor.
I have some money in the bank I have been trying to save for a car when I turn 16 and for college, but I would be willing to give it up if it meant helping myself. I would get a job, if I can do that. Most people here won't hire you unless you are 16.
But I would try. I am afraid to work with my dad now. I was asked to go with him this weekend, but I couldn't. I felt really bad. I get depressed because I want to go, but I JUST CAN'T...it makes me feel so small. I just wish he knew.
Wow, you would be willing to go with me? My heart quivered when I read this. I can't believe someone would offer to do that. That is the nicest thing ever. Hopefully I can convince people and get to an llmd.
I wish I knew someone here that I could meet and compare myself to personally. Someone to talk to and fall back on. But, that really is amazing that someone would go with me. That really is great.
I think maybe if I could go there to the llmd it would be nice to meet someone in person to talk to. And ask questions and compare myself. I mean, I may not have lyme, but it is like 1st, maybe, 2nd on my list!
Everything keeps pointing that way more and more. And my 'clean' MRI that I am having Friday will probably add to that! I will keep everyone posted.
Well, I hate that I make these so long. I waste so much of everyone's time. I am so sorry. But, THANKS so much for the help. And SHAME on whoever left me that comment. And I hate that they live in TN. Since that is my neighboring state. I know a lot of people that live in TN and most of them are NOT shmucks like that. (I only wish I could say what I really think of that person)
Luckily, I am not that kind of person. I just feel that person should be ashamed, and they totally messed up. And it is NOT right to judge me like that when they do NOT even know me.
THANKS so much for the help, advice, and support. It means a lot. It really does hit deep down that people are caring. (well, most people) For those people who care, I thank them and I am very grateful to be apart of this!!
THANKS!!!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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I have been thinking about my career in medicine. Because I will be graduating in 2 years. I wanted to go into emergency medicine, but I have been thinking about like LLMD, rare things like that. Things other doctors don't know so much about.
I think it would be amazing to help people who can't be helped by anyone else.
Well, I got mad at my mom because my aunt called. They talked and she said she didn't think I had fibro, but she did know someone who had lyme and it took them a while to get diagnosed and they had to had IV treatment for 6 months. But, she didn't know much about it.
I knew more. But she didn't say what her opinion was because my mom went off talking about something else. She said I probably had Strep Arthritis from my high ASO. I threw a fit saying that it would make sense if joint pain was my only symptom.
I went to my room before I blew up in her face. Then, I when I came out she said 'now that you are over your angry spell...what else do you have...' she said I had never told her anything before!! YEA RIGHT!!! I said' YES I HAVE...YOU JUST WEREN'T LISTENING LIKE USUAL.'
So, I came and made a list. It has "57" symptoms on it!! And I didn't put a few on there. It would be around 60-61 had I put everything on it!! That is amazing. I didn't know myslef it was that much.
I re-looked up Endocarditis because it can be a co-infection of Lyme, and I think it is possible that I have it. The symptoms I have for it are: fatigue, weakness, chills, night sweats, muscle aches and pains, shortness of breath w/activity, splinter hemorrhages, joint pain, and NUMBNESS!!
That is 9/16 a couple I am not sure about. But, the numbness thing I have been having I thought was caused when I cross my legs and cut the blood circulation off. Which would make sense if I had a heart condition.
I also have the symptoms for mycoplasma infection. (I read about it on a post on here and looked it up) Basically, cough, allergies, hoarseness....same stuff I have been having lately.
Well, I am going to make out a chart of my symptoms and give it to my mom. She will flip and not believe it, but it is true. She will be amazed.
Oh yea! This is off subject, but Guess What!!??
I drove for my first time today!! My mom let me drive. It was awesome! I did a really good job too! I am sorry, but I am so excited I thought I would say something. I feel like everyone on here is like a second family so why not tell!
Well, I will get started on the chart for my mom. And see what she says then. She won't believe or take it seriously, but she will get over it. She just thinks she knows everything about me! I never complain about anything anymore so she doesn't know anything!
It will be a rude awakening for her, but she will get over it! Maybe then we can get something done! Hopefully!
Thanks so much for the support and encouragment! I really appreciate it!
THANKS!!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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posted
I made an Excel spreadsheet of symptoms in one column and either: often, sometimes, or seldom in the other column. It tells my symptoms and how often they occur.
It is pretty good. I will see about putting it on here, maybe. It is missing several symptoms, but uh well. It has 53 sypmtoms listed!
UNBELIEVABLE!! I did not realize I had that many until I wrote them all done.
Well, it is late here and I have to get up early for school so, thanks a lot!
-------------------- Jesus sweated blood over the task that lay before Him.He could have escaped his brutal execution at anytime,but he didn't he stayed there for you.
God bless,Christi Posts: 306 | From Alabama | Registered: Feb 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I don't know how you possibly get up for school. My daughter had all those symptoms and couldn't get out of bed.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Hi again christi, I read your last post. Please let me know what city you live in (how far from Phenix City). I have just started as moderator for Alabama Lyme @ yahoo but there's not much info on there yet.
We should talk as soon as possible and get an appointment set up. You should not try to order any lab tests on your own. All of the ones we did locally were negative. It was not until my daughter had a challenge of specific antibiotics that 3 out of 3 tests showed positive and that regimen should be directed by a LLMD.
You will need to write a brief history of your illness, get all of your labs and studies along with the results and any other pertinent medical records from your physicians. Once you have this together, we can FAX this information to the LLMD that my daughter saw and then get an appointment set up if he feels he can help you.
I will get costs for the visit, labs, trip, etc. together and then see how much money we would need to get in donations if it is more than you can afford. Also, do you have any insurance that would help with this, reimburse you, etc.? Since LLMD's don't usually accept insurance, payment is made up front then insurance payment is made back to you if approved.
If you seriously want to do this, then I wouldn't waste any more time on what people say about you or what they think about you. Save your energy. You should be under the care of your family doctor, a psychiatrist possibly for the depression and also a LLMD. These doctors should be able to help you get approved for home school so that you can rest and get better faster as well as not miss any more school work. My daughter did not attend the 11th or 12th grades. She had a home-bound teacher. She did pass her exit exams the first time and graduated with her class.
Looking forward to hearing back from you.
p.s. Please print these last posts and let your parents read them. I've been there, done that. Would be very happy to talk with them.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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posted
I see on your MySpace that you live in Florence, AL. I visit my aunt in Leeds, AL (near Birmingham). How far are you from there? I have 2 friends there that have documented Lyme Disease.
-------------------- Paula Posts: 31 | From phenix city, AL | Registered: Mar 2007
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