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Posted by wilsongal22 (Member # 11210) on :
 
Since I can't do much myself, I was wondering if there are any remedies and stuff that I can do myself to help. I figure if I can't do the LLMD thing right now maybe I could try something else just to see.

Is there anything I can do myself?

Also, I have these weird dreams where I am almost awake but not all the way. And I think about stuff to myself. Well, last night I had a dream and I was talking to myself about blood.

Weird, yea? But, I was wondering if anyone knew how different blood types affect things like this. It probably has no significance, but I was just wondering.

Could that even be possible? Why do we have different blood types anyways?

I am O neg. so I am a universal blood carrier. Which would be bad if I had Lyme because it would then probably be a bad idea to donate blood.

Hmmm...I don't know. It was just one of those things in the world you wonder about. I guess I will look it up. Although, there will probably not be anything about it. Just a weird thought and figured I would ask.

Well, anyways, any comments? Thanks

[ 22. April 2007, 02:27 AM: Message edited by: wilsongal22 ]
 

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Posted by wilsongal22 (Member # 11210) on :
 

 

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Posted by Tincup (Member # 5829) on :
 
Hey hey...

You said.. "Since I can't do much myself, I was wondering if there are any remedies and stuff that I can do myself to help. I figure if I can't do the LLMD thing right now maybe I could try something else just to see."

Can you let us know what you want to treat? What you have? What you have done already? What worked and what didn't? Why no LLMD?

I'm sorry.. this type of broad question is going to be hard to answer without more information.

Not clear to me.. as it could be Lyme, mold, Babesia, Bartonella.. etc. etc. If we knew what you had concerns about.. we could try to share info that may help.

As for the blood. My suggestion is to NEVER donate blood if you suspect you have Lyme. Better safe than sorry.. and the storage procedures for blood that has been donated is known NOT to kill the spirochetes.

I think we each have a unique blood type that is determined by the flavor of ice cream we eat the most.

OK.. NO.. I don't know why we have different types... but if you find out.. I would be interested to know.


 

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Posted by Boomerang (Member # 7979) on :
 
wilsongal, you've had many offers of help on this board, from some very kind people.

[ 23. April 2007, 12:24 AM: Message edited by: Boomerang ]
 

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Posted by wilsongal22 (Member # 11210) on :
 
Well, I have several things I was wondering about, but OBVIOUSLY I am not wanted. Yes, I have recieved helpful offers. I am so sorry I am NOT able to use them.

People must forget that I am ONLY 15. I can't drive until July 28th when I turn 16. Even then I can't afford a car. My parents are stubborn and don't listen to me. I can't help that.

People have offered to set up appointments with an LLMD for me, but I have heard some things about those LLMD and prefer not to go to them. Also, some have offered to talk to my parents. You guys don't know my parents. They are not like that. I appreciate the help and offer, but my parents are DIFFERENT.

I don't know why people are putting me down just because I can't help what my parents do. I can't take myself to a doctor.

If I could don't you think I would be doing everything in my power to be getting better? Don't you think I want to get better? Obviously I hate going through all of this. No one should have to go through anything like this, but I can't help that.

I can't play my sports. I can't go out with friends. I can't even go to school normally and be like everyone else. I have more doctors than anyone I know. None of them will help me. I parents don't realize what is happening to me. And I have only 1 friend who is the only person who realizes I am going through something serious.

Although, she gets down because I can never go places with her or play tennis or anything.

I can't do anything I love anymore. I wish I could, but I can't change that. And no one understands. All I am asking is if there is ANYTHING, ANYTHING at all I COULD do for myself. But, I guess not. Whatever.

I guess I am just going to wait for something bad to happen. Obviously that is what it takes now-a-days to get a little help. Or maybe I will just wait til my echo. I know it is going to show something. I had irregular heart beats when I was little, but the doctor here said "NOT TO WORRY." Just like all the others. I have chest pains and slinter hemorrages. I can't run or do anything I used to without getting tired.

So, obviously something is wrong. But, what does it matter. I don't even care anymore. I will just have to live with it. Like I have done for so long, but one day, ONE DAY, I will know.

I will know what is wrong. And they will wish they had listened to me. But, for now I am locked in a prison with no windows and no doors and no key. And I can't get out.

I like to believe it is for a reason, but I haven't found it yet. Maybe it happened for something I did bad. I don't know, but I hate it.

I guess it is time for me to leave. Its been good til now. But, I think some people here are not happy with me. I'm sorry for that. I hope I didn't do something wrong to make people not like me. But, if I did, I understand, that happens a lot lately.

I am going through the hardest thing that has ever happened in my life, and no one knows. I can't deal with it much longer, so, hopefully, I will find out soon. If not, I don't know. I will be that person who breaks down and ends up in a padded white room not being able to move.

Which I would hate. Although, it would probably be better than how I am living now, so that would be a plus.

Well, I guess I may leave my results of whatever else I go through in the 'general' section. Other than that, I don't think I will be on here much anymore. Seems I have overstayed my welcome.

But, for those who care, thanks for believing in me and supporting me. I will post my progress in the general section. Just for reading purposes I guess.

Thanks so much. I really appreciate all the help, support, and everything. I just think I should go away for awhile. I will come back when I have a serious problem that can be helped.

Which at the moment, I need help with my mood changes. They are getting severe lately, and seem to be sparked by the sightest comment. Which, I am sorry for, but I can't seem to help or control them. My fault.

Well, thanks so much. And I'm sorry for everything. Maybe I wouldn't make a good doctor after all. sorry bye
 

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Posted by Robin123 (Member # 9197) on :
 
Christi -- don't give up on us so easily. We really are trying to help.

I think you need to know specifically what you're dealing with in terms of the infections and then to specifically treat for them. You can't do that without an LLMD.

So what do you mean you've heard things about the LLMDs? We need you to get to one of them so you can find out what's wrong and be treated.

Lymedad wrote an open letter to families. It's a little ways down from your post. You are not alone in your predicament. Lots of young people and their parents are going through what you're going through.

Are you going to take any steps in the direction of getting to a doctor who's knowledgeable about Lyme/coinfections? Are you willing to reach out to any of the people on this board here who said they'd be willing to help set up an appt or communicate with your parents? I think they could do it tactfully. After all they're parents too. Could you be willing to let people help?
 

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Posted by wilsongal22 (Member # 11210) on :
 
I couldn't sleep. I said some stupid things. I'm sorry.

I know some people on here really are trying to help. I know that. And I appreciate it. But, I think some people are annoyed because they give help, but I don't use it.

Someone offered to set me up with their LLMD, but I was informed by someone else that is was not a good idea. They had been told some things about the LLMD themselves. So, I don't plan on going to that one.

I want help. I want to be able to go to the doctors and get help. I want to be able to talk to my parents. BUT I can't.

I am NOT an open person. I keep to myself. I am NOT imotional in front of people. I am weird I guess.

But, 2 years ago this June, I lost the one person whom I could talk to. My grandma. I told her everything. She was the ONLY person I have ever been open with. I called her everyday and told her EVERY detail of my day. I went to her house when she got really bad and refused to go to the doctor. She is very stubborn like me.

I convinced her to go. She loved me more than anything I and I loved her the same. I told her to do it for me. Although, she knew what was wrong and knew she was going to die. I stayed with her for 2 weeks in the hospital. And in ICU the doc said a week later she had cancer.

She had lung cancer, brain cancer, every cancer. It had eaten her body. But, she hadn't told me. They moved her to a private room where I watched her die for a week. 2 weeks after I convinced her to go, she died. The morning I was supposed to get my cast off my foot. And I will never forget those 2 weeks.

That day, the one and ONLY person I could talk to and felt comfortable with, died.

That wasn't supposed to happen. I had never imagined it.

2 months later, I had foot surgery and that started my down hill path. I think (if I have Lyme) that is what set it off. I was going through a lot of tests and doctors and death and then surgery. I think that was enough to set it off.

So, right now I am just trying to get through. Again. It has been so hard. And it never stops being hard, but I suppose it is that way for a reason, I hope.

So, yes, I am willing to get help from a LLMD and I told my mom that was what I needed to do, but my parents want to get my blood thing down and to me seems like they refuse the fact that it could be Lyme.

I don't think they want to believe it. I have told them everything. I gave them a long list of my symptoms. I have told them stories about people from here. I have done everything I can to try and convince them, but they feel like I should keep going to the doctors until something happens.

Sadly enough, I am hoping the echo shows something. I told them eventually I would have heart problems, show if it shows something, I think it will convince them.

So, yes, of course I want help, but for right now I can't do anything. It is on my parents an I have to wait. I have been waiting for longer than 2 years, why not wait just a little longer. I am close and I feel it.

Just a little longer.

So, I am sorry about before. It's the mood things.
I get upset easily. And angry. I just want to know why and what is wrong. I just want everything to end so I can be normal like all my friends. Get to do stuff and go places and play sports for my school again.

But, I know that probably won't happen. At least not now. But, I would be ok with it if I only knew what was wrong. So, hopefully I am as close to finding out as I feel like I am.

Well, thanks a lot. I know I seem like a pain, but I am not so much in person. I just get frustrated and stuff. I just don't want to be that person on here everyonr hates and talks about. And wish I would get a life and realize everyone has problems!

But, if I ever become a doctor, I can promise that I will be Lyme literate! That's my goal! I am going to help those who can't find help. I don't know if I can but I am sure going to try!

Thanks so much for being there for me. And I will work on not being that person. Now that I have a huge headache and don't feel well, I think I am going to try and sleep because Spring Break is over and I have school on Monday. Yay.
 

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Posted by wilsongal22 (Member # 11210) on :
 
Wow, looking back on my posts, I really have grammar and spelling problems. I know I was saying those words to myself correctly, they ended up different than what I had said

Hmmm... that's weird.

Sorry. I just didn't want you guys to think I was stupid and didn't noticed I was making so many mistakes. I see them now, but they didn't seem to be that way when I was typing it before.

Anyhow, thanks, and have a great day...or night...it is so late for me. Please excuse me. Bye.
 

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Posted by fancykat (Member # 7857) on :
 
Hey...
I just wanted to let you know that I have read your posts and I'm truly sorry you are going through so much right now.

I totally understand what it's like to feel isolated - and feeling like so much is piling up inside that you might burst. It must be frustrating to have so much going on and feeling like your hands are tied.

I know you asked about treatments you could do in lieu of going to an LLMD. It doesn't seem like your question was answered...and unfortunately I myself don't know what natural protocols are helpful. There is a lot of information on the topic. If someone doesn't come along shortly, you can try searching the medical forum with the keyword "natural" or "alternative".

I don't post here often, but I read a lot. I know that sometimes people are hurting so much themselves that their responses seem harsh or not helpful. And sometimes people are just plain combative. You are doing a good job trying to focus on the positive and that's a difficult task when the negatives seem to prevail.

Again, I am so so sorry you are having a rough time. Just know that there are compassionate people out here.

It's fine with me if you need to express your feelings. It's far better to let it out than let it fester inside.

Sending healing vibes your way!
 

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Posted by Robin123 (Member # 9197) on :
 
That's too bad about your grandma. Mine passed away and I miss her very much too.

I'm wondering if it might be possible to collect the right info to give to your parents. I'm thinking Lyme brochures, the Public Health Alert newspaper, Lymetimes quarterly. And download Lymedad's statement to families. Really, Christi, I could send you a packet of this stuff if you'd be willing to give it to your parents for their perusal.

The alternatives question is complex and it's too late now for me to get into a discussion on that. There's actually a lot of info here, if you search for "alternative treatments".

Take care and keep your "eyes on the prize" -- your health.
 

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Posted by sizzled (Member # 1357) on :
 

 

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Posted by Geneal (Member # 10375) on :
 
I have a hard time relating to your anger with members of this board.

I do realize you are not in a good place.

We do want to continue to help you.

However, you must be open to that help and/or suggestions.

I realize that you are completely dependent on your parents.

That makes your journey different than some of us.

Please do realize that some members here cannot afford to see a LLMD or pay for medications.

Some have had to sell their houses, furniture, etc. to get treatment for themselves or their family.

When you feel as if you are at the end of your rope,

Tie a knot at the end of it and hold on.

I know you are a spiritual girl...Use your faith.

Try to take a deep breath, count to ten and realize that most of us are frustrated

For you and your inability to chart a course to find out what is wrong with you.

This may be a good time for you to regroup.

Print out all of the info/advice you have from here.

Take your time and digest it.....slowly.

Pray and ask God for guidance and answers.

Know that we continue to be here if you need us.

Hugs,

Geneal
 

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Posted by canbravelyme (Member # 9785) on :
 
Thank, Geneal

That's good advice for me this AM, and likely for many of us.

Best,

canbravelyme.
 

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Posted by Dave6002 (Member # 9064) on :
 
One thing you could do now is to try garlic juice made with a blender with 3 to 4 gloves of garlic and some water.

After liquefying the garlic, take it with a lot of water or soup after a meal.

And see if you have a herx then improve.

It helped me and other. Garlic can kill bacteria and virus.

You can search "garlic juice" here to get more info.

Dave
 

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Posted by stymielymie (Member # 10044) on :
 
i am sorry you are getting the cold shoulder
here, and i am not going to jump on you.
i have not read your postes in the past but will go back and read them, promise.

i would like to get some basic info to try to help you on the correct path.
do you have a dx of lyme?/?
did you find a bulleye rash, if so you have lyme.

next, these splinter hemorrages do scare me
and you should point them out to
your parents.
i was a dentist and have backround in pathology
and anatomy.
splinter hemorrages are an indication,
along with irregular heartbeat, that you need to see a cardiologist asap.
this is independent of whether you have lyme
or not.

these hemmorages under the nails mean a possible
endocarditis of the heart.
this can be very dangerous and you should seek
help immediately.
if you would like i would be very willing to talk with your parents about the issue.
email me @ docdave130"at"msn.com
i will do whatever or give you whayever info you think you need to get yourself to the cardiologist.

your parents must have some concern with your condition, even if they do not believe you
have lyme.
don't get made at me , i am only trying to help you thru this process.
it is very hard to give people advice without a
true diagnosis.
the splinter hem and heart papls are a sign that you need immediate care.

your parents must love you enough to care that
you are having a heart problem that should be
looked at immediately.

email me if you would like to talk or
want more info.

docdave
 

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Posted by kam (Member # 3410) on :
 
I can't imagine being 15 and going through this.

Just going through 15 is tough enough.

But, I sense an inner strength and a fighting spirit. Things will come together for you.

Wasn't able to read all that others wrote.

When I first came down sick and did not know what I had, I got the book eating for you blood type. Not sure exactly what the title was.

Don't know if that has anything to do with your dream.

I have learned that food intake is important and cutting out certain foods have helped me.

I also know that lots of people had lots of suggestions for me when I was looking for answers.

I had to do what I could when I could...not on their time, but my time.

It is very confusing at first. But, things fall into place.

AS an added thought. My lyme doc had me take garlic when i first started treatment. i mixed it in with cottage cheese and cukes and tomatoes.

don't know if your parents will be open to purchasing garlic for you but if they would ...you could give that a try.

garlic is a natural abx.

i still try to get it in me but not as often as i would like.
 

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Posted by stymielymie (Member # 10044) on :
 
ok Christi,
i have read many of you articles.
there is an extreme change in temperment
from your first post to now.
you are getting frustrated, depressed,
and full of aniexty.

this is very normal from having a disease of unknown origin.
your parents seems concerned enough in the posts that i read, that you were able to get some treatment.

it appears ,that you, have been unable to find the right doctor to give you a dx.

still my first concern would be the
cardiologist. many symptoms can be coming from
the high ASO, which may indicate a heart
issue. i would have them retake the ASO
and do a echocardiogram, ekg, and blood cultures
and stress test to make sure your not having
heart problems.

at this point everything else is secondary.
treatment for lyme(if dx as such)
can be done later.
you must prioratize you medical problems.
always here to help or more info

docdave
 

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Posted by Nebula2005 (Member # 8244) on :
 
It's so frustrating to try to convince other people when you know you're right, but they don't understand. Your parents are, no doubt, just as clueless as most of the people around me.

It's banging your head against a wall, that's for sure. And you can't prove you're right.

I've had to keep a lot of it to myself. It makes you feel pretty alone, but it builds your resolve.

Do as much as you can to rule out other medical explanations for what's wrong with you. Keep up what you've been doing.

Your parents are probably worried about you and don't want to do anything to hurt you. When what you tell them goes against what the doctors are telling them it leaves them caught in the middle and frustated, too.

Also, I remember other people with Lyme and coinfections saying that they have violent and bloody dreams.

I know how hard it is to stay calm when you want to fix what's wrong with you. It's hard, too, to watch as you keep losing time to being sick.

If the doctors your parents take you to continue to not have answers, there are a lot of people who have to treat themselves without doctors.

Lyme doctors are few and far between, it's too bad but it's the way it is. This situation isn't likely to get better any time soon.

If you have any money at all one thing you could do is buy Buhner's book "Healing Lyme." See if you think your parents would be supportive of your using herbs.

I've been sick for a very long time, longer than you've been alive! I'm still here and although I'm not happy about it, I have to continue to try to find ways to get better.

Sometimes I just want to scream. So here goes:

"scream"
 

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Posted by lymewreck36 (Member # 4395) on :
 
Hey there from lower Alabama, your own home state. We've talked back and forth a couple of times, and I've looked for you in "medical questions," but have not been in "general" too much.

I haven't been in touch because I am having a health crisis of my own. Hysterectomy not healing, being too sensitive to antibiotics anymore and lyme getting out of control. Going through withdrawal from pain meds, lortab. Just a huge batch of garbage I'm wading through, my husband is out of the country for a couple of weeks, and I have three young daughters to take care of. It is really a balancing act if there ever were one. I'm barely hanging on.

Now, down to you. Don't you DARE leave this forum! I will take it personally. Yes, some people make little remarks that they, I'm sure, don't perceive as sharp as they turn out. I know about this, and it is painful when you are so cut off from help.

I can imagine what you are going through. My youth was scarred by ill health, mental, and my parents only told me I was a bad girl. I cried all the time and they were tired of it and pushed me away. Yes, they loved me and love me very, very much. But their generation and personalities had and have no skills for handling this. They don't "talk" about things you know.

They took me to a psychiatrist for one year. I stabalized, and then went through a couple of decades of fighting episodes of depression, strange migrating and intense pain no one could explain, sleep disorder, and many other things. I was once told in my twenties that I should consider a lyme diagnosis by my now X-sister-in-law. I laughed at the idea because I had a fibromyalgia diagnosis by a "GOOD" doctor.

All the while, I lived with the label by my parents that I was the "difficult" child, something to this day I try to overcome with them. Silly I know, because I am not a difficult person. But that is human nature, the desire to be fully accepted and loved by your parents. Dont' get me wrong, they love me very much.

As I told you , my second child I believe was born with lyme, my third I believe died from lyme, and we all got reinfected with lyme while living in Connecticut, including my husband. It was still over a year before I finally went to a LLMD and got a diagnosis, and began my journey to improvement.

O.K. All that to say, I think I can understand the torment, and yes, I call it torment, you are going through. YOu see. So you cannot leave this forum, and others that really care.

I know emotionally it is hard to wait for responses on the forum, but you will have to work on separating your emotional response from an intellectual response. By this I mean, although you feel hurt when you don't hear back immediately from the forum, acknowledge to yourself that we are a diverse group of personalities, each struggling and suffering some personality changes as you are, and take the good while discarding the bad.

This is the best formula I can give for a world view throughout your life. Like throwing wheat into the air, we let the unnecessary splinters fly away in the harmless wind, and gather the best for nourishment.

Yes, a pretty metaphor that can be much harder to emply, but please try.

You cannot come to an open forum and expect only pretty responses. We are from all over the place, from all kinds of backgrounds, and all that is necessary to participate here is being sick and not insult people. We are a slice of life.

Now, Private message me your home address if you think it will be alright with your parents. I will gather some material on natural remedies and mail it to you. That is the most proactive I know how to be. You can order these materials online, but that would take a credit card.

I can contact the LLMD here in lower Alabama and ask him for advice on speaking with your parents, if you think that will help. I actually see a llmd in Louisianna. I will be at his office in about two weeks. I can speak to him about you and leave with him some of your posts. Let me know if you want me to take these actions.

He will not think this strange as he is a tremendously Christian man, a Sunday School leader.

You have received here good advice above about making sure your heart is looked into. Focus on that, and when that issue is cleared up, your parents will be more open to questioning why you are still sick. Right now, they are on the trail of the heart thing.

Maybe your parent could try a low dose antidepressant for you to help get you through this. Or, you could try a natural rememdy called "ST. John's Wart" from the health food store. It is believed to help stabalize depression.

AS far as being "appropriate" on this forum, now this is going to be hard to swallow, try not to fire back at people that are not too sensitive. Maybe just acknowledge that certain posts were not helpful, and then drop it instead of picking it apart. No one on the forum likes "flaming" as it is called. It is hard to bear in a forum we look to for support. So when there is flaming, we feel like our life support is going to cave in.

Also remember that some of the most supportive people here are struggling day by day, so we can only leak out small amounts of support to others over time as we are able. None of us can poor ourselves into someone else, as much as our hearts call us to. Like myself, trying to take care of three young girls at home, and then another one online. It is difficult.

I say these things to plant information in your head to help you bear the kind of responses and degrees of response you receive to your calls for help. Hopefully this knowledge will help you deal better with what you receive so that you don't leave the forum.

I will look into "General" on the forum as I can to see if you are there. If you have a medical question, it is very appropriate to be in "medical."

Remember that we also can be frustrated when we try to help and nothing we offer helps. We are people too, and trying to help you.

You are a very smart young lady. It is silly to worry about your spelling and such because we all know that lyme disease can cause all kinds of cognitive problems. I am an English teacher and spelling is horrible for me. WE understand all this, so don't beat yourself up about it.

Try to get St. Johns WArt. Maybe even Wal-Mart has it. Meditate on some of the things said here today. And stay focused on getting better.

Bless you. :-)
 

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Posted by CaliforniaLyme (Member # 7136) on :
 
Christi, I feel insulted and wounded by what people do and say on this board- A LOT!!!!!!
I get my feelinsg hurt and tell myself I am never coming back and how dare people treat me like (!&@^% and act like I have never existed when I do my best to help and have for years now-and you know what helps me?

I look on this place like an elevator & waiting room in a doctors building devoted to treating Lyme. Everyone is a Lyme patient or prospective Lyme patient so there are going to be some very GRUMPY NASTY people here!! And just like ANY other place in the world there are going to be nice ones, and fake nice ones, and truly friendly ones, and people like me, like most people, who are nice enough most of the time but who get upset and nasty themselves sometimes too (like Cavey! HA Cavey gotcha*)!!!!!!!!!!!!!!!!! It is because they are real people and real people who are sick- so probably there are more mean people here than maybe in other places!!!

But people sometimes may sound mean when they are trying to be VERY honest with you. I know there was a post from gangagal about being a journalist and writing about Lyme- and I told her honestly that I didn't htink the combo of beign a journalist and having that nickname on here worked at all if she wanted to be taken seriously. That probably sounded REALLY mean, but it was honest and I was tying to address her issue helpfully. I like her posts!!

The same way sometimes when we abx-lovers get all riled up over proponents of herbal or alternative stuff or vice versa- tempers flare!!
That doesn't mean we don't care - in fact it is because we do!!!

Not everyone. Sure, there are some people who get on the elevator and they are in the building
just to get what they need- and better for them!
I htink the wanting to help others can be pathological....!*)!*)! Seriously, as a way to justify ones existence!!!

So I hope if you do go, if you need us, you will come back!!! I am all for leaving this place now & then- I think it is healthy!!!!!!!!!!!!! But I also love it when oldies come back_!!!!!!!!!!!!

I hope you get some help. You ARE in a very hard place not being able to transport yourself and having no $ for care. I am sorry.

I hope one day you find a good LLMD- we all deserve that!!!!!!!!!!!!!! And get the answer as to whether it is Lyme or not!!!

NOT to scare you and NOT to be suggestive in ANY WAY that this is the case, but to make you feel better because you are being treated perhaps like a hypochrondriac- adn there is nothing more awful when you are not-

but the differential for MS
AND ALS
AND Lyme disease
AND LUPUS

INCLUDES HYPOCHRONDRIASIS

because many times with neurological diseases the subtleties of illness are SO subtle that right up until things are VERY evidently wrong people often think they are NOT!!!!!!!!!

So you are not alone!!!!

All of those poor ALSers out there- many of them get treated like total crap until they are told they are dying (and no you don't sound ALS-y to me, I am trying to get you to see that the world is screwed up for a lot of people when it comes to diagnosis*)!*)*!)! And for you it is- and I wish it wasn't so-
Anywayz,
If you ever need to leave, leave,
but come back*)!*)!
Best wishes,
Sarah
 

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Posted by wilsongal22 (Member # 11210) on :
 
Wow, thanks very much.

I like that last story. Very, out-there! Also, I can't remember anything after reading lymewrecks post! It was long, but very meaningful. So, I have no idea where to start because I can't remember what I was going to say.

Ok, first, I would like to say thanks. The support really means a lot and I was just caught up in everything. That usually happens at night and I am more myself during the day. So...

Also, about the heart thing, I had irregular heartbeats when I was really little. I can't remember what age. But I remember every detail about my checkup and the doctor and everything. She sent me for an EKG to make sure it was nothing to worry about.

The cardiologist said it was nothing to worry about. So, it never came up again. I am not sure if I had it after that because that was the only doctor who had ever noticed it.

The slinter hemmorrages are recent. I have noticed them for a while now. I didn't know what they were until I was doing research on high ASO. I read that it could cause Endocarditis. And one of the symptoms for that was slinter hem. So, I checked my fingers and I had 3 of them.

I have a few now. I noticed yesterday. They are little though. I have had some big ones. Plus, I was worried about heart problems because I have chest pains sometimes. I like to play outside and I built a bike track in my back yard with huge jumps, but I can only go around about 2 times because my chest will hurt a little and I get tired real easily and I get a headache.

Plus, the high ASO. It said if you have a high ASO for over, say, a year. You were at risk. Mine has been 2 years. So, I have a lot to worry about.

Out to docdave(!) my ID said Tuesday that he wanted me to get an Echo because he thought it would be a good idea. I told him about everything. So, I am in line to get one. As soon as my Ortho calls because he does all my referrals. So, he is going to call with my appt. and then I will have that and see what the Cardio. says! I am scared about it but happy as well.

I just have a feeling that something HAS to show on it. And that would be a huge step for me.

Also, my parents, I think they are just focusing on what is happening now. I think once the ASO is down and I get this heart thing done with they are going to be listening to me. They just want to see what the doctors are going to say about the ASO and everything 1st. We have enough on our plates already, you know.

So, I think that is how it is for now, but they will come around.

Also, I did order those brochures off of one site. I can't remember, but I got them for my parents.

Also, I can't remember who offered, but I would be willing for you to talk to your LLMD about me. With my posts. That would be ok. I would be interested to see what they'd say.

And the garlic thing, very interesting, I am going to have to try that. Maybe before a test or something just in case I do herx and it makes me sick! No I am just kidding! But, I will try that. I haven't heard that before.

About the holding in the anger thing, that is very very hard for me. I just get upset and my brain runs on and everything comes out. I don't mean to. But, I am working on it, promise.

Starting today, I am only going to accept positive stuff, and not acknowledge the bad. I am optimistic, not pessimistic. Everything will be ok. Breath in good, breath out bad!

I like to draw, when I am not to shaky, and since I am in to the whole dirt-bike thing I started drawing all the logos as of last night. It relaxes me and gets me to focus on just it and everything else leaves my mind. So, I think you guys would be proud. I drew 2 and they look awesome if I do say so myself! Better than the colored ones I printed out!

I am one of those who can look at something and draw it. Or sketch. However you say it!

Ok, I am trying to answer everyone and acknowledge each and every person who replied, but I can't remember anything you guys said! I will post this and go back and read them again to make sure I didn't miss anything.

But, Thanks So So Much.
 

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Posted by Melanie Reber (Member # 3707) on :
 
Good morning Christi,

I have to admit that I have not read any of your other posts...but it seems like you have several here who have and who are offering great advice.

I only wanted to add that there are a few chat rooms for those who are younger who are also going through tickborne disease issues...along with parent sites too, and perhaps, you could check them out to see if they are helpful?

Teens and Parent sites:

Lyme Warriors- An online support group for young people with Lyme disease:
http://health.groups.yahoo.com/group/Lyme_Warriors/

Parents of children with lyme: http://www.pocwl.org

Lyme Aid Parents: http://health.groups.yahoo.com/group/Lyme_Aid_Parents/

Email group for teens: http://www.lymepa.org/html/lymeteens.html

Teen Chat Room: www.silverfeldman.net


My best to you,
Melanie
 

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Posted by wilsongal22 (Member # 11210) on :
 
Ok, I do realize you guys are out there and willing to help. It's just sometimes I hit my bottom and forget. I am sorry and I don't mean anything by it. I know all of you have gone through this and I shouldn't be reminding you. But, I know all of you can understand where I am coming from. I'm sorry I go overboard sometimes. I try really hard not to, but I just break down and the world seems like it is ending, AGAIN.

I apologize for that. I know you guys are forgiving, understanding, kind, and are there for me. I know that, I just sometimes lose myself and all that goes away and it doesn't seem to matter anymore. I wonder if that is from some type of brain symptom? Hmm...

Oh yea, to docdave, no I have not been diagnosed with Lyme. And I don't remember a bulls-eye rash. Had I, I would know for sure I had Lyme, but all I have now is my symptoms, and doctors who can't think of anything else.

I have had every different blood test for everything, x-rays, bone scans, MRI, nerve test, and I am about to have an Echo. I have been tested for liver and kidney problems, lupus, arthritis, infection, everything pretty much. I have seen a GP, Ortho, Ortho spec., ID spec. Rheumy, I am about to see a Cardio., and a Ped. Rheumy.

I am trying to talk my parents into not seeing the Ped Rheumy because this is not a bone problem. It is more than that and it would be a waste of time. So...

Ok, I still don't know if that is everything, but I tried so....

Thanks so much for everything, and when I get out of line just kick me back in! I would really appreciate it! Thanks so much!
 

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Posted by wilsongal22 (Member # 11210) on :
 
Thanks, I will be sure to look into those!
 

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Posted by wilsongal22 (Member # 11210) on :
 
What kind of garlic do I need?

I asked my mom and we don't have any like cloves of garlic.(if that is what they r called) but we have garlic seasoning. She said there is also garlic salt. I told her I would find out. And she said we could get some.

Thanks
 

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Posted by randibear (Member # 11290) on :
 
I have read all the posts here and feel for ya, I really do.

I have a husband who does not believe I have lyme, won't even talk about it, and on top of that, is verbally abusive... so I understand.

Soo, how about getting some cat's claw and just trying it? you can get it at walmart, vitamin shoppe, or most any stores.

I don't think it would hurt you and would help some. Also grapeseed extract might help.

Just some suggestions that you might be able to do on your own.
 

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Posted by kam (Member # 3410) on :
 
Wilson gal,

It is the fresh garlic that is in the produce section of the market.

You need to cut it up in small pieces as it is strong tasting.

I go through phases. Sometimes I can handle it and other times I can not.

Elephant garlic is not so strong, but I do not know if it has the magic ingredient called allicin or something like that.

This is why most garlic capsules do not have the same affect...they are missing that ingredient.

It can be purchased from a certain company but I found it too expensive for my budget.
 

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Posted by wilsongal22 (Member # 11210) on :
 
Ok, thanks.

What's cat's claw? I see it all the time on here, but I don't know what it is.

So, I need fresh garlic like the onion looking thing, right? I will get some. I don't guess it would hurt to.

I told my mom to get some. I didn't tell her why YET because she would think I were crazy and say it's stupid! So, I told her I was conducting an experiment and needed some! I don't know why she would accept that and not that I need some to see if I herx and get sick!

So, she said she would as soon as I found out what kind! Thanks.

Thanks!
 

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Posted by Vermont_Lymie (Member # 9780) on :
 
Careful! Raw garlic on an empty stomach can make a person
feel nauseaous. Best to eat raw garlic or its juice after or with
a meal.
 

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Posted by wilsongal22 (Member # 11210) on :
 
In our seasoning cabinet we have garlic salt. All the ingredients say is salt, garlic, calcium something, and garlic oil. I will get some garlic though. My mom said she would stop and get some if she can find it.
 

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Posted by wilsongal22 (Member # 11210) on :
 
Yes, thanks. I probably wouldn't eat it by itself or nothing. I don't think I have ever had garlic, but I have smelled it before so the only way I would probably eat it would be with a meal or after. I might put some in it that way maybe I wouldn't notice as much or something, but I definetly wouldn't eat it alone or on an empty stomach.

Thanks for telling me that though, just in case!
 

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Posted by wilsongal22 (Member # 11210) on :
 
Well, I think I may be taking a step with the garlic thing. Does it count as a step?!

Well, today is my moms birthday! Yay! And we ordered her a nice cake and all. But my dad is working. Good thing because now she has to go to Wal-mart. So, I told to get garlic and she added it to her list! Yay! Nothing like chicken, birthday cake, and garlic to make the perfect meal!

Well, thanks a lot for telling me about this. To me, it is worth a try. At leats this is something I CAN do RIGHT NOW. I don't know if I want to try it right now because school starts tomorrow. It's probably not a good idea if I herx.

How long does a herx usually last?

Well, I have to try it sooner or later. Why not sooner! I have already missed some school and I will have to miss more for my Echo and a few more doctors appt.s so. Uh well. I am doing ok in school right now. For now. I am going to have to work really hard to get my grades back where I had them before though.

I usually get staight 100's. But, lately it has come down to 95. That is horrible for me. I know 95 is really good for a lot of people, but I set my standard very high and I don't settle until it is met! Which I usually never have to study or do anything to keep it that way, but lately, I have struggled some.

So, I am going to study and do more now.

Well, thanks agagin for telling me about the garlic thing. That's all I was asking was for anything like that that may help! Thanks!
 

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Posted by kam (Member # 3410) on :
 
Christi,

I am sorry but I do not recall how much garlic my LLMD suggested I take a day.

So, I would just keep it simple and small to start with so you do not go into a major herx.

I am doing well now if I get one clove in me a day.

I also learned I have to really cut out sugar, flour, pasta, white rice, potatoes, etc.

I keep trying but everytime I do I get so sick I am bedridden and in lala land.

Hopefully, you will be OK.

It doesn't seem to bother some with lyme.

I have read that the spirochetes feed on sugar and starch. I'd rather not feed them if at all possible.
 

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Posted by lymewreck36 (Member # 4395) on :
 
Christi:

Be careful when you see a rheumy. A rheumy is not a "bone doctor." He treats things like MS, Fibromyalgia, and don't be surprised when he tells you you have this one! It is popular for lyme people to be told they have Fibromyalgia. I was for a long time.

Then he will medicate your symptoms to make you comfortable...something for pain, for sleep, etc. This is not ENTIRELY a bad thing at this point since you need to function.

But it cannot be done and ignore the root cause of your problem. You will have to continue to seek those answers and not give up.

Just to let you know, I went down the rheumy path for so many years, so I know about this. 99.9% chance this rheumy will tell you he knows how to diagnose lyme disease and will NOT know how, so don't put too much weight into his opinion on lyme disease.

Mary
 

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Posted by Dave6002 (Member # 9064) on :
 

quote:

---

In our seasoning cabinet we have garlic salt.

---

The compounds in the garlic effective for Lyme are very sensitive to temperature, time and storage.

So you need fresh garlic and prepare garlic juice freshly before the meal, then after 30 minutes, take it with a lot of soup or water, so that the harsh taste becomes bearable and doesn't upset your stomach.

More importantly, this will increase the absorption of the effective garlic compounds and prevent inactivation of the garlic compounds by the stomach acids.

Another critical thing is you need liquefy the garlic by a blender to maximally release the effective compounds.

Chopping, squeezing or chowing is much less effective and may just waste time and disappoint you.

Garlic juice may be, if not greater, as effective as antibiotics in some cases.

Just need to pay attention to way how to take it.

Garlic powder, garlic salt and even garlic capsules won't work in Lyme.

Also remember garlic juice is very strong, you need to take caution as other said.

Start slowly, one or half clove at beginning and ramp up to 3 to 4 cloves daily.

Good luck

Dave
 

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Posted by wilsongal22 (Member # 11210) on :
 
Ok, thanks.

I now have garlic! My mom the jumbo garlic and it is a little pack with 2 cloves in it. It didn't smell and I peeled the outside off. And it still didn't smell so I figured what the hey why not bite into it!

NEVER do that! I just bit into and I feel sick already! It really hoped my sinuses! And it burnt my tongue! It's worse than onions!

But, if it will help then I am going to do it. If I do herx with this, how long does it takes before I feel it? And how long will it last?

Wow, I wonder how this stuff helps anything! I haven't even swollowed any yet and I already feel bad!

Well, thanks, I will, of course, be careful. Thanks! I appreciate all the advice! Thanks!
 

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Posted by stymielymie (Member # 10044) on :
 
see christi,
you demeaner has changed considerable, back to the sweet inquitive girl from othe rposts i read.

1]i would suggest that you make a copy
of Dr. Buracanos link about lyme disease.
i would circle all the symptom appropriate
on the sheets and let the rheumy read the
article
the link is: http://www.lymenet.org/drbguide200509.pdf
this is a very comprehensive guide to lyme disease. it goes from symptoms, diagnosis,
treatment and other information.
you may want to give your mother a copy of this.
she will tend to be a little more understanding
than your father{men}
give her the copy with the symptoms marked off.

have her read it like a book, this is real
research article about lyme.i has all infortmation that the lyme association
recommends.

2] neurologic lyme:
this is caused by the lyme bacteria or other coinfection to infiltrate the brain barrier.
it usually is babesia but can be others.
below is info on this subject:

http://tinyurl.com/8txf4
as for your spelling and concentration, this is unforunately a side effect of the lyme disease.
if young enough and treated correctly ,you may fully recover.
i once had an iq of 178 in dental school
now down to 131. my lyme went undiagnosed for 7 years prior to treatment, and have been on treatment for 7 years.

you may really want to consider talking wife the guidance councelor at school.
they are trained psycologist and would be a good place to start.
you could bring her to 2 above papers also.

uncontrolled emotions are due to the neurological effects of lyme.
in most instances, depression must be treated with antidepressants. it is not that you are "crazy", but that your brain chemistry
is not in balance, medication is the only way
to control this.

moderate to severe rage is also a symptom of neurolgic lyme. "lyme rage" can come on like a flash, stay or leave like a flash.
you also have the fact ,that you a a maturing young girl, with other hormones driving the
system also.

3] i am glad that they are goig to check the
cardio first, only that is off your back,
it may not be anything, but it could also be a symptom of lyme. i developed a mitral valve prolapse [leaky valve] from the lyme.

4] i think many of us like to see things ,
like drawing that other people do.
for many of us, those things are not or are extremely difficult for us to do.
people would love you to scan your pictures
and post on general support
it is also very theraputic for you.
if you have a scanner, scan into you computer
go to walmart.com , photo section.
open a new folder and upload your pictures here
next right click on the picture go to properties
and copy the url.
then under the post section you will see image button, click on this and press paste.
your picture will be posted.

last for now at least:
you are the only one that understands what your body is telling you, no one else knows
or can understand, this is why they even
doctors say there is nothing wrong.
test do not come up positive and say,
yes you have lyme.
it may that you can only be diagnosed by a
very very good diagnostition, possibly
your id doc or even ortho, if they are willing to read the above info.

don't get mad at me for saying this ,because you do not want to hear this, you want to be cured and be healthy and live a normal life.

this may very well happen, but you also have to look at your symptoms and diagnosis as
a disease that may not be cured, with couple of pills.
you must realize that this may be with you for a while, yes it is not fair, yes you don't deserve it, but we all have the same emotions about this.

many here, as i do , have this disease in the chronic form.
it doesn;'t go away so easy.
it takes strong willed individual to climb above the disease and help thyself.

many here pray to god many times a day,
asking ,why?????
they is no why , but there is why am i letting this beat me down. beat it back.
postive attitude is essential to curing any
disease.
"a heathly mind produces a healthy body"
the mind is a strong influence on your goals to recovery.

said enough, my fingers are tired, will check
up on you, and as before you can email me
for any reason i will answer you same day.

hugs
docdave

[ 23. April 2007, 08:54 AM: Message edited by: stymielymie ]
 

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Posted by kam (Member # 3410) on :
 
Christi,

I tried that too. I have heard of people being able to eat a clove of garlic a day.

I just can't do it.

I have to chop it up in little pieces and mix it in knudsen cottage cheese with cucumbers, tomatoes and small pieces of green onions and sea salt and freshly ground pepper.

Now it is time for me to go to the store. I am out of half of that stuff.

I know another person who mixed it with cottage cheese and Bob's Big Boy Thousand Island Dressing.

I haven't tried that yet.
 

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Posted by wilsongal22 (Member # 11210) on :
 
Ok, thanks.

It's bad when I realize my mood and temperment. I don't like it. But, I am living with it. I have decided that getting mad makes everything worse. I am a glass half full kind of person. And I like to be a kind person. Not angry and depressed all the time.

I am going to focus on school and doing the things I have to do to get to med school. Which some day I will. I am just going to keep on going and think positive until I am diagnosed correctly. It may take some time, but I am NOT going to let it get the better of ME.

So, I am going to try the garlic and anything else I can to help myself, but I am going to fight. Fight whatever it is that I have not myself.

So, yes, my mood has once again changed, and I am going to work hard to see that is stays positive.

Thanks so much for the help and getting me back on track. I am sorry about the things I said before. I am sure you guys can understand. And I don't mean any hate against anyone on here. I promise I am not that person. So, I hope I can continue on and forget about my negative side!

Thanks!
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

---

Originally posted by lymewreck36:
Christi:

Be careful when you see a rheumy. A rheumy is not a "bone doctor." He treats things like MS, Fibromyalgia, and don't be surprised when he tells you you have this one! It is popular for lyme people to be told they have Fibromyalgia. I was for a long time.

Then he will medicate your symptoms to make you comfortable...something for pain, for sleep, etc. This is not ENTIRELY a bad thing at this point since you need to function.

But it cannot be done and ignore the root cause of your problem. You will have to continue to seek those answers and not give up.

Just to let you know, I went down the rheumy path for so many years, so I know about this. 99.9% chance this rheumy will tell you he knows how to diagnose lyme disease and will NOT know how, so don't put too much weight into his opinion on lyme disease.

---

quote:

---

Originally posted by lymewreck36:
Now do this for me. Insist to your parents that you sign a records release after you finish with each doctor. Just get a copy to keep at home. Make a file for yourself in your room or where ever. Keep the files of every single doctor you run across.

---

Good idea....for every patient of Lyme disease!
 

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Posted by wilsongal22 (Member # 11210) on :
 
Thanks.

That was an interesting study. I don't believe I am a hypochondriac because today we did notes on it and our teacher said that hypo's read about a disease or something and may think they have it and there mind will believe it and show the symptoms.

Also, nursing and med students start learning about things and may start thinking they have it, but she also said that they may misinterpret 'normal' body aches and pains. Mostly joint and muscle pains and such. Or even psychologic disorders like depresstion.

Well, anyways, I had symptoms before I started looking at diseases and stuff. Accoding to her some people may see something on t.v and not think anything about it but their minds remember it and cause it to happen when really there is nothing wrong. They just have physical symptoms.

So, I don't think that is me. But, I had been having sleep, attitude, anxiety, depression, those such things. And we are talking about disorders such as those and I sound so much like those.

But, not a bad case. Just mild I guess. I couldn't wake up this morning. I slept all day in school! Yesterday I couldn't sleep and last night and today I couldn't stay awake. So...

Well, I best be going now. I am very tired and plan on going to sleep right after AMERICN IDOL(!!!) and HOUSE M.D. (there may b a new episode on but I don't know). It's one of my fave's! I have seen every one of the episodes and have both seasons! The same with Grey's Anatomy and E.R!!

Medicine fanatic! It's just my kind of thing you know! Future doctor here! Goh, I can't wait to slip on my beautiful comfortable scrubs and my WHITE coat and walk through the hospital all the time! I probably won't have a life outside of that, but I am ok with that!!!

Sorry, I am babbling. I do that a lot. I wasd tired, depressed, excluded, and quiet at school. Like everyday, only worse today so this is the only time I ever get to say what I want people to know. I am ANTI-SOCIAL...

Have a great week!! Thanks!
 

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Posted by lymewreck36 (Member # 4395) on :
 
I watched American idol and House last night with my daughters. Didn't like House at all. Not the usual show. The patient died, and i think it was uncharacteristic of House to let happen what happened. They just needed to do a show where a patient dies so the show won't be so formulaic. So they did. Not a good show!

Mary
 

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Posted by wilsongal22 (Member # 11210) on :
 
I watched American Idol and then, of course, HOUSE, M.D.!! I love HOUSE! He has people die all the time. Now Grey's Anatomy a lot of people die on there. But, House has miracles and then some die. But, I think last nights episode had a good message.

Sometimes it may be something complicated, but it could be something as simple as staph. I thought it was stupid they hadn't tested for that or anything and she had to die, but still. Not one of my fave's, but I think the message was good.

I called my ortho today to get my appt. for my echo, but we didn't get a call back. I don't know why. They always call back. Unless he took his staff to Florida. He has a place there and sometimes takes the whole staff for a vacation!

Unless he was in surgery. I don't know, but I haven't gotten my appt. yet. So...

Well, once again I am so tired. I couldn't go to sleep last night and couldn't wake up this morning. Also, we get report cards tomorrow. My math has suffered a lot. I was so angry when I saw my grade. it was 12 points lower than usual. I don't know why. I am having a hard time processing all of it.

More than ever before. Also, I am having trouble readin and understanding what I read. I can't read unless it is completely silent. Which never happens. I can't here if more than one person is talking because to me it all blends in. It drives me crazy.

Well, I need to go study ALOT for my math test tomorrow. See ya!
 

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Posted by wilsongal22 (Member # 11210) on :
 
Ok, my ortho is definitly interested. He has said all along he doesn't know, but wants to find out, of course. His office closes at 5 and he called 'himself' at 8 tonight and said he talked with my Id duck and he called Infants & Children (which is across the street from here and is where I go when I am sick) because neither of them knew a Pediatric Rheumy.

He set me up with a Cardio there and he is going to set up the echo and everything. And then I have to go to a Ped. Rheumy at UAB or Vanderbilt. He said to make sure we tell all the doctors to fax my stuff to him because he wants to follow my case.

He was even nice enough to ask about my bone bruise. I told him it wasn't better. He said it could take months, but he asked so...

Well, off to MORE ducks. I really don't want to go. But, I have to. That is going to be several days of school I will have to miss, and I am starting to do worse so I just want to do my best not to miss and work really really hard.

It is so hard for me to understand what we are doing in math and english. I don't understand the math. And we are breaking down literature in english. I can't do that. I am so lost in there. I just don't know any of it. We are talking about...oh my goodness....I forgot what it is called.

Things like hyperbole, ummm.....literary stuff....I have no idea. Goh.

Uh well, I don't know, I just can't understand any of it.

Oddly enough, I have a 100 in Psychology! I understand all of it. Because I know all of it! HaHa.

Well, I am watching American Idol Gives Back...it is very good so far. Amazing. Well, see ya!
 

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Posted by wilsongal22 (Member # 11210) on :
 
Well, once again I experienced an anger outburst.

Same as usual. Got mad over something small. Got mad at everything after that. Slammed doors. Threw some stuff.(not big or breakable) then laid in bed depressed and cried.

Just like usual. Felt like everything should end. Tired of seeing all the stupid ducks who have no idea what is wrong with me. All that stuff.

The thing is, I know it is happening and I don't want it to, but I can't control it. It is very strange. It's like I am watching it happen and can't do anything about it.

Well, I really need to study, but I am SO TIRED. My eyes hurt and I feel like crap. Everything hurts. I am going to have to wait til morning and study on the bus. A decision I will regret, but I can't help it.

My mom and I got in an argument because she has to make my appt. to see a duck and then he is going to arrange the echo. So he prolly just wants to ask questions and such I guess ( a topic I am stressing over and having bed anxiety about.) And I can't decide whether to go in the afternoon with my dad or morning with my mom.

I hate going anywhere with my dad. I don't feel comfortable. But, going in the morning means missing school. Something I know I don't need to do, but wish I could do because I hate it and I am so tired of it.

Of course, I got mad and said 'I DON'T KNOW' angrily. And she got mad right back.

Honestly, I hate meeting new people, being social, going places, anything like that. So you can imagine how hard it is for me to go to another duck.

At least this one is right down town. But the one afer that is going to be over 3 hours away. NOT looking forward to that.

Well, I really need sleep. I can't hold my eyes open any longer.

Thanks
 

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Posted by wilsongal22 (Member # 11210) on :
 
Ok, I had a very very rough night last night. Anger, depression, sleepiness. It went away eventually like always.

Well, today on the bus (and most other days) I was listening to music and had my knees propped against the back on the seat in front of me.

I could feel it starting to tingle like usual, it got worse and worse and when we got to my house I told my mom I wasn't getting off.(she drives the bus!) I asked my friend if my foot was moving. I was trying and I couldn't move it up and I could just a slight bit down. I couldn't feel a thing.

It had went all the way up my left leg to my lower back. Had I continued to sit there it would have been my whole left side probably.

Once again, I got up and I couldn't walk or feel the ground with it. I couldn't feel enough to walk. And then the pain sets in. It hurts X-TREMELY BAD. It hurts more in the back of my knee. And it hurts WAY more if I don't completely relax my muscles and not move it at all.

Why does it do this? Anyone?

Before I sat down on the bus, I had this really weird headache. Different than usual. My head hurts to push on the right side above my ear about and inch toward my forhead, but my headache was right behind my ear about an inch. It stills vaguly hurts now, but I have never had that before.

Well, I guess I will be going. Thanks
 

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Posted by lymeHerx001 (Member # 6215) on :
 
Do you have any burning in your joints or muscles?

Thats the symptoms that I had as a teen.

In my legs they would burn, and I would wake up and my legs would be in lots of pain.
 

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Posted by wilsongal22 (Member # 11210) on :
 
Well, I can't that I do. I don't remember if I ever had, but to my knowledge no.

My joints and muscles hurt and get really sore. And my muscles get weak, but no burning. Just tingling. And numbness. I am not really sure though. I can't really remember.
 

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Posted by paulamea (Member # 11365) on :
 
Hi Christi,

I haven't posted in a little while but I've read all of your posts that I could find. I am really interested in what information you heard about the LLMD in Alabama that you mentioned. I haven't seen any comments about him here, so would you please tell me what information you heard about him and where it came from....guess you could P.M. me if you don't want to share it in this post.

Sounds like you're getting some very good advise here, support and ideas from some very smart people. Maybe if you print these posts out and then high-light them (I like yellow), you could decide on what info you want to act on, etc. and then get started on prioritizing things and moving forward in whatever direction you choose.

Also, I realize you can't just call up and get all of your medical records but signing releases for all of your records to be sent to your main doctor would be very helpful. Most referrals do send back a report to the referring physician, but just in case, having the lab values and results (everything you listed that you've had done) could help with baseline values, etc. Personal experience - 2 of our physicians moved or stop practicing, so if I had not had copies of these records, I would never have been able to get them and they were important.

Also, I want to say that I am certainly not pushing a Lyme diagnosis on you but this would probably be an easy diagnosis to rule out by a consultation with any LLMD. This may end up saving time and money in the longrun.

The advise here has been heart-felt and very helpful. Hope you follow through on having your heart problems checked out ASAP. Please continue to keep us updated with any new information.

Being 15 is hard enough all by itself, having an undiagnosis illness that just seems to get worse and worse, is just not fair to any 15 year old. Just remember there is always light at the end of the tunnel, some days may just be a little sunnier than others. Hang in there....
 

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Posted by lymewreck36 (Member # 4395) on :
 
I live in lower Alabama, along the Gulf. I saw, for one year, a doctor here that I was told was llmd.

He does understand chronicity and use the antibiotic combo's, but he was investigated once as many llmds are.

AFter that, he has a tendancy to withdraw treatment before your symptoms resolve. This disqualifies him for llmd status in my opinion.

And after I got my medical records from him, I noticed that he "doctors" records to make sure he says you did not have symptoms and you had a trial off antibiotics.

I left him becuase he wanted to take my 6 year old off her lyme treatment. ONe month he acknowledges she is having symptoms because we report them, but at the same time he says he wants to do a trial off antibiotics the next time we come in.

I argued that with him, and he bluntly stated that he had no intention of spending another 10,000 dollars of his own money to be defended in court again, so he has to demonstrate to insurance carriers that he tried to stop antibiotics.

The next time I came in, I was armed with a symptom list and a plea not to discontinue her treatment. With great fervor, he suggested that I was making up symptoms, and that her knee pain and fatigue could be anything. I reported that the last time we tried to take her off, just two months prior, she went downhill very far in the course of five days.

He suggested the next time I come in, to bring my husband so we could clear up the issue of my daughter's symptoms.

I never saw him again. I could barely breath when I got to my car, the anger was so intense. I wanted to beat his face. His arrogance, the insults, like I WANT my child to go through this.

Now, don't think I'm crazy, but I have since then run into several people that I would swear have lyme, and I know won't travel out of town to see a doctor. I have referred them to this doctor because he does do the Igenex testing and check for all co-infections. He is a good starting place for many people, but I warn them that this doctor will NOT go the long journey and treat them until all symptoms have resolved.

That is the story on the "llmd" in lower Alabama. He has his usefullness, and then you have to move on from him. AS for me and my children, I will never set foot in his office again.

Also, his wife is his secretary, and she doesn't return phone calls. When you get frustrated, the doctor gets really snotty with you. AFter all, it is his wife we are talking about. And the wife can be such an air head.

mary
 

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Posted by wilsongal22 (Member # 11210) on :
 
Yes, thanks. That is the story on the LLMD in south Alabama. That's what I have heard. Gets patients, but drops them soon after. Something like that.

Well, all of my records have been faxed to my original Ortho here. He has done all my ferrals and all of my stuff has been sent from my other docs to him.

All of my future stuff will be faxed to him as well because he said he wants to follow my 'mysterious' case. I will give him credit.

He fixed my foot. And he does seem to care more than any of my other doctors. He called me at 8 at night. 3 hours after his office closes. He calls all my doctors and discusses my case with them and my best options. And he does any referrals and he does all my blood tests.

At first I didn't like him. It took him a year to fix my foot. BUT, he did take all the steps first. Over the counter meds, prescrition, x-ray, bone scan, cast, cortisone shot, and 2nd opinion, and a nerve test. And he did my surgery and it worked! So, he is better than I thought!

Plus, he talks with a funny acsent that I like!

Well, I forgot what else I was going to write.

Ok, today, he had a social gathering at school (just the H.S. if they have been good all week.) And my friend forced me to go. I didn't tell her I didn't want to.

I absolutly hate going. Way to many people. And honestly it isn't that many people. I just hate being around a lot of people. Sometimes even my classroom is to full.

Well, I got in there and one of my friends didn't come. I tried so hard to convince my friend that we should leave and go find her because I knew she was still in her class and they weren't doing anything because today was Senior day and everyone was gone on fieldtrips.

I begged. I wanted out of there SO BAD. I got really hot. And I could feel my heart beating and my head started feeling weird. I really wanted out, so finally I just left her and went to a class with 4 of my friends and I was ok again.

I think I have like a social fear. Also, we have 3 lunches in one period. I have 3rd lunch. Well, with so many people gone there was room in our lunchroom for 2nd and 3rd to go together, so I got to go early! Well, way to many people in there. I get the same feeling.

Anything I here I feel like it is about me. I always feel like people are staring at me and watching me and talking about me. I get really scared. I hate walking into school or down the hallways, in the lunchroom, social gatherings, anything like that. Public speaking, just being around people at all.

Even standing in a group of like 5 or 6 of my best friends. MY mind wonders and I don't pay any attention to them. I always feel like I am in a box. And I want to be alone. I just don't like being around people at all.

WHAT IS WRONG???

Anyone else have this?

Also, I had an anger outburst at my little sis. She was staring at me in the car on the way home and she would look at my 'window seal'. That's what she said. She LOVES to do that because she is not 'looking AT me' just NEAR me and she knows it annoys and irritates the crap out of me.

I put the sun thing over me where she couldn't see and warned her I would get really angry realy easily if she didn't quit. My dad never told her to stop or anything. I told him I would hit her. I even wanted to jump out of the car. But, I am NOT keen on killing myself so...I didn't.

We got home and she continued on and pushed me to far. I knew it would happen. And I went off on her. I yelled at her and hit her once. Not to hurt her, but I pushed her onto the couch so she would listen to me. I explained to her what her annoying and angering me does. I told her I would get mad. She wouldn't listen.

She locked my bedroom door while I was walking my dog so I couldn't get in my room. And she starting screaming when my mom got home claiming I was killing her! I got yelled at all day. She continued to do it for several hours and followed me around. She lay facing me and the wall on the couch and couldn't even see the t.v.

Claimed she was looking at the spots on the wall. Yea...sure. DROVE ME CRAZY.A normal person would be annoyed and angry, but when you do that to someone who has anger issuses you have to expect it. I tried to hold back but she pushed me to far and I told her that. She thought it was funny.

So...I told her I was sorry at the end. She could care less as long she accomplished her job of driving me insane. So...

Besides some leg, muscle, and some weird pains in my stomach that is about it. A headache here and there. And REALLY tired. I am going to sleep ALL weekend! Thank God for weekends with NO SCHOOL!!!

I don't remember if I told you guys I have an appt with the cardio next Wedn. at 9:30 A.M. I will keep you posted on what he says. And how we proceed.

Well, I am exhausted and my whole left leg is numb from sitting here so...talk to you later and have a great weekend. Thanks!
 

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Posted by lymewreck36 (Member # 4395) on :
 
I have three daughters and this sounds very familiar.

Now, consider this.

You are very intelligent, but acting unintelligent.

You see, you are LETTING her have the power over you. That's right. YOU are giving her more and more power as you insist on your response.

Try this next time, NEVER notice her. She will stop pretty fast.

And eventually, rather quickly, she will loose the desire to try to stare and you and get your goat.

Also, you will find that all of a sudden, it really doesn't bother you to be looked at.

Give it a try.

mary
 

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Posted by lymewreck36 (Member # 4395) on :
 
Oops, one other, much more important thing.

They lyme doctor in lower Alabama is NOT a total waste of time. IF that is all you got, then you need to got there. He WILL do the appropriate testing with the appropriate labs, and be very helpful in diagnosis. He will begin treatment.

It will be awhile before he starts to drop you, and in that time, you can investigate other llmd possibilities.

But getting that initial testing is very important, and if lower Alabama is the only place your parents will take you to begin with, then you insist they take you here.

The world is not black and white, and you shouldn't cut your nose off despite your face.

Mary
 

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Posted by CaliforniaLyme (Member # 7136) on :
 
Sounds like very good advice from Lymewreck Christi*!*! I would do it!!!!!!!!!!!!!!
 

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Posted by wilsongal22 (Member # 11210) on :
 
Well, thanks for calling me intelligent, but I HAVE TRIED NOT PAYING ATTENTION SO MANY TIMES!

That makes her do it more and more. I am smart enough to know to ignore her and it will stop. Well, that is NOT always the case.

Also, you have to remember, I try really really hard to control myself, but it always seems to come out. It is something I can not control. I try. I really really do, but it never works. Its like not being able to control depression. Or being able to control pain. I can't do it.

I didn't get up til 1:30 today. I wouldn't have gotten up then, but I had to. As soon as I walked out of my room that was the first thing she did. I will go outside or something and she follows me everywhere.

This comes back to the 'locked bedroom' door thing so many people got angry about before. But, that is one reason I do lock my door. Also, I like to be alone. I don't like being around people. So...
 

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Posted by lymewreck36 (Member # 4395) on :
 
I have found this to be universally true with children, especially young ones.

When a child is used to getting a desired response by his or her actions, and then she doesn't get it, that only means one thing to the young mind.

It means that she has to try harder, and harder.

It takes a certain period of time before the child gets the message that the previous response is NOT going to ever happen again.

If you are used to consoling a baby that is not sleeping, and then you decide you want the baby to console itself and learn to sleep through the night, this is what happens.

The first night you don't go in and pick up the baby, the baby will scream probably to the point of messing the diaper and throwing up. The child just thinks that she is not yelling hard enough, and continues to yell.

The second night you try the new method, you might think the child will have learned the lesson you desire.

But, no so. The child thinks that he had to cry very hard the night before, so that is what she has to do this night as well.

But the child does not get the desired response, again!

On the third night, the child will cry slightly less. ON the fourth night, there will be a little protest from the child, but by the fifth night, you are home free.

Your sister will try harder for a certain period of time, thinking that is what is going to be necessary. When the desired result does not happen, she will eventually get the message. But you have to be willing to persevere LONGER than she is. That is the trick.

Mary
 

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Posted by wilsongal22 (Member # 11210) on :
 
Thanks.

I have been trying that for a while now. I heard it somewhere or something and tried it one day. Which it worked the first time. But, now it doesn't. And little things bother me more.

But, I feel ok right now. My friend across the street had a bon fire. My little bro and friend and her and her dad. We cooked smores and just sat there.

My hearing hasn't been great lately so I sat there the whole time staring at the fire not even listening. It was actually very relaxing. I was thinking of how fires are like life. I was listening to chirps and crickets and looking at the stars.

It was relaxing. A little cold when the fire burned down, but I like just sitting there not moving and I never said a word. Ever once in a while I would here them talking about how I was staring straight at the fire not saying anything or moving.

I would recomment this! Except then they laid on the ground in sleeping bags and all I could think of were ticks! I wasn't worried though. I didn't care if one got on me. Not like usual. Because I know what to do and what to look for.

I did check after my shower. I felt because they were sleeping out on the trampoline! I don't like sleeping away from home because I like to be in my own bed where I can feel comfortable. Plus, I don't like being around people. So, I left.

But, it was relaxing for about 4 or so hours that I just sat there doing nothing. I am hurting more today though. I woke up late and I am still tired and I did something to my neck again. And the rest of my body is hurting.

Also, my stomach and abdomen hurt when I am doing anything but sitting or laying. I tryied go somewhere with my mom, but I got a bad stomach aceh and got sick. And a headache. It has been one of those bad days. But, I have been really quiet today. I don't know why.

Well, I can't stay awake much longer. Last night I dreamed my left leg started turning black and hurt really bad and had to go to the hospital and have it scraped off and have skin graphs. So, I am not looking forward to going back to sleep. But at least I know I hit REM sleep. The 4th stage that is required. But, I am still tired.

I have been worrying already about the doc. appt. I have Wedn. I can't but think about it. I hope something shows and I can get at least an anwser. Not for everything I know, but something. But, then I hate going to new doctors. My ortho is ok, I have been going to him for about 4 yrs. so I don't mind, but I hate going to new people who don't know me and can't help me.

So, I am scared and worried, even though, I know, I shouldn't be.

Well, I am very tired and I am going to sleep. Bye.
 

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Posted by k-lyme (Member # 5574) on :
 
Christi,

Come on! Get some help! You are smart kid and your parents obviously love you, so get them to see that finding a way to get you tested via igenex and then treated by a LLMD will be the only way for you to have a shot at life again. You're wasting time. Valuable time. A rhemy isn't going to do $h!t for you, even for the pain. All they like to do is hop you up on anti depressants, which, in my own experience and in my reading of other peoples experiences, doesn't come a mile close in touching the pain.
From what you describe Christi, it sounds like you are going down hill fast. Do you know that the complete numbness in the one leg is a nuero symptom? And it doesn't get any better, without treatment. It sucks. It all sucks! Treatment and doctors are very expensive, but find a way Christi, find a way! You can do it Christi, you can do it! You are fighting for your life at this point, so give it all you've got. Use the resources you've been offered.

Sitting around and talking about all of this isn't going to get you better.

Take Care Christi,
K-lyme
 

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Posted by heiwalove (Member # 6467) on :
 
christi! enough already! get yourself to an LLMD, even if it's the doc in lower alabama to start - so much better than nothing! lots of people have offered to help you - take them up on it! it's frustrating to read post after post, knowing you're still not doing much to help yourself. i know you're only 15 - and i can't imagine how hard this must be for you. BUT. there ARE things you can do, people who have offered to help you get the assistance you need right now.

so, go to it! lyme is nothing to fool around with.
 

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Posted by jarjar (Member # 8847) on :
 
To dream of blood from one of the online dream dictionaries I use

Blood

To see blood in your dream, represents life, love, and passion as well as disappointments. If you see the word "blood" written in your dream, then it may refer to some situation in your life that is permanent and cannot be changed.

To dream that you are bleeding or losing blood, signifies that you are suffering from exhaustion or that you are feeling emotionally drained. It may also denote bitter confrontations between you and your friends. Your past actions has come back to haunt you. Women often dream of blood or of someone bleeding shortly before or during their periods and when they are pregnant.

Don't know if this of any help but thought I would post it for you.
 

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Posted by wilsongal22 (Member # 11210) on :
 
Ok, thanks. I know this and I am sorry for not doing more. I am going to the doctor Wednesday. That is a start. Isn't it. I got out of the medical loop for a year and I jumped back in a month or so ago. Ok. I am going to doctors and one in particular is trying his best to help me.

Right now, I have to be worried about my heart. Obviously if my heart don't work I can't do much about the rest of everything. I have told my mom and everyone about everything. I don't know why I am not moving faster. I am going to a doctor like every week.

That's all I can do right now. I am trying. And they are trying. So far, they haven't said I was crazy. They just said they can't find anything, but they are still looking. At least I have that. We didn't say anything about Lyme to my ID duck because that was the last time we were going to him.

He was a butthole. But, we have mentioned it to my Ortho. That's why he is sending me a a few more doctors. To see what they think. He is the only one trying to figure it out. But, at least he hasn't given up like the others.

I know it must be irritating to read my posts and they all same the same thing. "I feel like crap and I am tired of feeling like crap. And I am not doing anything about it."

I know. I'm sorry. But, I am doing everything I can. I am trying.

Last night sitting by that fire, I was thinking about everything. About not being able to do stuff anymore at a certain point. That eventually I wouldn't be able to do anything. About how I was going to feel. I feel terrible now. I don't even know how I keep going. But I do. Somehow.

I just wonder what it will be like when it all hits and I just crash. Believe it or not, I have never been to the ER. I never even went with my brothers or anyone. Never set foot in one. What is going to be like when it all hits and I have no other place to go.

If it is bad now, what will it be like in a few months. A year? 2 years? What if I don't make it that long? You never know what is going to happen. So try to enjoy every minute of life even if you have 50 years of life left, because you never know.

That is what I was thinking sitting by that fire. It was burning big at first, but then it goes down. Sometimes it came back up. Sometimes we had to help it back up. This morning it was still flaming, but sooner or later it will die down. Whether it goes itself or we put it out, it will die sometime, just don't know when.

Exactly like life. That's what I was thinking. Just wondering how everything works. Why stuff happens. Everything. And it is weird thinking about things like that. Because there is no answer. But, of course, you think there has to be. There HAS to be an answer for everything.

Or does there?

I don't know. Well, I am going to go. I have to work today .

And thanks for sharing about the dreams and blood. Very interesting!

Thanks.
 

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Posted by paulamea (Member # 11365) on :
 
LYMEWRECK36 ""The lyme doctor in lower Alabama is NOT a total waste of time. IF that is all you got, then you need to go there. He WILL do the appropriate testing with the appropriate labs, and be very helpful in diagnosis. He will begin treatment. But getting that initial testing is very important, and if lower Alabama is the only place your parents will take you to begin with, then you insist they take you here."""


K-Lyme ""Christi, Come on! Get some help! You are smart kid and your parents obviously love you, so get them to see that finding a way to get you tested via igenex and then treated by a LLMD will be the only way for you to have a shot at life again. You're wasting time. Valuable time. A rhemy isn't going to do $h!t for you, even for the pain. All they like to do is hop you up on anti depressants, which, in my own experience and in my reading of other peoples experiences, doesn't come a mile close in touching the pain.
From what you describe Christi, it sounds like you are going down hill fast. Do you know that the complete numbness in the one leg is a nuero symptom? And it doesn't get any better, without treatment. It sucks. It all sucks! Treatment and doctors are very expensive, but find a way Christi, find a way! You can do it Christi, you can do it! You are fighting for your life at this point, so give it all you've got. Use the resources you've been offered.

Sitting around and talking about all of this isn't going to get you better."""

CHRISTIE - PLEASE RE-READ BOTH OF THE ABOVE POSTS

Exactly what I've been saying. I didn't think Lymewreck36 was discouraging you from going to the LLMD in Mobile. Everyone has different experiences with the doctors. Yes, my experience with him was more positive but it was also the ONLY option that my daughter and I had at the time. I know your parents care and want you to get better but you've stated what a hardship it would be to go there for an evaluation. It really is the closest and most convenient option that you have. It's not near as costly and time-consuming as others have had to go through i.e. N.C., Florida, PA, etc.

So here's the offer again, please accept anyone's offer to talk with your parents, help with the arrangements for an appointment and get the ball rolling. School will be out in just a few weeks and you can have all the details worked out by then.

Keep the heart check-up appointment, make sure your records are with the Ortho doctor and get a copy for you to keep. If some emergency happened over a weekend, you wouldn't have any records to back up all of the tests you've have. Even the Cardiologist probably would want to see these records.

Ok, nough for now. Hope you're feeling OK this weekend and ready for school tomorrow.
 

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Posted by Health (Member # 6034) on :
 
I think? people are forgetting this is a

15 year old kid you are talking to.

It is not registering with her, most likely because she is a 15 year old kid, I remember when I was 15.

If you want to get a message to her, ask to speak to her parents.

Trish
 

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Posted by Lymeindunkirk (Member # 7118) on :
 
Something doesn't ring true here to me.
 

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Posted by wilsongal22 (Member # 11210) on :
 
Thanks, that's what I wanted to read after I just had a fight with my parents.

I was supposed to go to work, but I have felt worse lately. Everytime I try to do something my stomach starts hurting really bad. I don't feel good and I get a headache. And I am so tired all the time. Like out of it.

I was standing in a daze in the kitchen and my mom asked what was wrong and I said I didn't feel good. Well, my dad got mad because he was ready to go. I was going to let it pass and go with him but he got mad and left without me.

He was no idea how I feel. I wish they did. So my mom and little sister starts to leave and I asked where they were going and she said they were going to get new dresses for church. And I was going to say ok.

But, she "and no you can't go. If you don't feel like going to work you don't feel like going with us."

I didn't want to go. I start feeling worse when I go places and do stuff. But, she that first and made me so mad. She was going on and on about how I don't feel good and so on so I started crying and yelled at them to just go away and leave.

That's when I hit my bathroom door. Cracked it several times. But, I didn't want to hurt myself or the door so I quit. And got it together.

I know they care, but they have NO IDEA what I am feeling or going through. I NEVER feel good. I can't help that and they don't understand. I am sick of people thinking I am fine just because I look fine. If only they knew what was happening inside. They would understand if it were them.

Well, anyways I haven't spoken since then. They are mad at me. I just wish they knew what I felt like all the time.

And, no, I am NOT ready for school tomorrow. We have about 5 weeks left. Thank God. But, I am going to the University of North AL in July to take Psychology for the Early Scholars Program and then I am taking afternoon classes during the fall and spring. They pay for 5 credit honors for free! So...

5 more weeks and I will be a Junior! Yay! but, something tells me it won't be everything I hoped it would be. I wish Wednesday would come. I want to talk to the doctor and find out what is going on. I have been trying to think of an adult I could talk to. I know what I would say and everything. I just don't have anyone to talk to. I figure everyone keeps pushing me to, I have one but I hardly ever get to talk to her or I will be late for class.

But, I am looking for someone to talk to. I am going to burst if I keep holding all this is.

Well, I have to go get ready for school tomorrow. And go to bed EARLY.

Oh and what does that last comment mean?

I hope nothing negative. We are try-to-be-positive people on here and I can't take negative comments again. I tend to be glass half empty and working on being positive so I will disregard until I figure out what it means.

And thanks to the person who realizes I am 15. I try telling people that, but it is like no one cares how old you are we are all the same.

Well, I can't take much more of this so I need a long hot shower and a warm bed, bye.
 

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Posted by Geneal (Member # 10375) on :
 
Okay Christi...I do realize you are only 15 years old.

I have an idea.

Call Igenex 1-800-832-3200 and order the test.(It doesn't cost anything to order it)

It may not make it to you by Wednesday, but I am sure this doctor's

Visit will be followed by yet another, and another.

The test is 190.00 for IgG and IgM Western Blots for Lyme (test 188 and 189).

Do you have some money saved up? I realize that you are saving for a motor bike, but.......

I think this is WAY more important.

Maybe your parents will pay half.

Take the form to one of your Doctors...Have them sign it and then ask them to pull your blood.

Remember, the docs are supposed to work for you.

The results will be sent to the doc ordering the test, but you can get the results from them

And then go from there.

It isn't the best answer, but it may be a "happy" medium for all involved.

I am praying that your heart is alright and that you get something good from your doctors visit on Wed.

Take a deep breath.. You can order the test....

You can have it sitting at your house so that when you are able,

You can have any doctor sign it and pull the blood.

Hugs,

Geneal
 

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Posted by wilsongal22 (Member # 11210) on :
 
Thanks.

I don't think age should matter. I know you guys know I am 15, but it shouldn't matter. I should be able to handle anything. I just get lost sometimes. I don't know how many days like today I can handle.

It didn't seem bad, but it was. I haven't felt very good today for some reason. And I have been having stomach pains for no apparent reason. And headaches. And just feeling like the sky is falling or something. I just have a bad feeling.

BTW, I tried talking to my mom. She can't seem to get passed the joint pain. I told her that was so 2 years ago. If it were just that I could live with it. She said well what can't you live with.

I said, the knee, wrist, elbow, hand, finger, neck, back, stomach, chest, and head pain, the depression, numb legs, so many doctors, mood changes, and everything else. I told her straight up. She really didn't say anything. But she did say she would talk to the doctor about Lyme.

She says that everytime. I told her I was tired of seeing them. It had nothing to do with my high ASO or arthritis or anything like that. It is something way more than that.

That's what I told her. It is hard for me to talk to her. I looked down the whole time. I got really scared, nervous, and hot. After a while I felt like I wasn't getting anywhere. I went to my room and cried. We have been fighting all day. I don't know why.

I just don't feel good. I feel like something is really wrong. Like I can't last much longer. But, really nothing MAJOR has happened. I haven't had to go to the ER or nothing. So, I guess that means it can't be that bad YET. It's like waiting for a bomb to go off or something.

Well, I am sick of talking about being sick. I am tired and don't feel good, and worst of all all, I have school tomorrow. Yippy.
 

---

Posted by Lymetoo (Member # 743) on :
 

quote:

---

Originally posted by Geneal:
Okay Christi...I do realize you are only 15 years old.

I have an idea.

Call Igenex 1-800-832-3200 and order the test.(It doesn't cost anything to order it)

It may not make it to you by Wednesday, but I am sure this doctor's

Visit will be followed by yet another, and another.

The test is 190.00 for IgG and IgM Western Blots for Lyme (test 188 and 189).

Do you have some money saved up? I realize that you are saving for a motor bike, but.......

I think this is WAY more important.

Maybe your parents will pay half.

Take the form to one of your Doctors...Have them sign it and then ask them to pull your blood.

---

quote:

---

Originally posted by paulamea:
Would you please post the web-links for the lyme info you sent to Christie and also those about the testing. Thanks

---

Why??
 

---

Posted by TNJanet (Member # 10031) on :
 
Kelmo,

My feelings exactly!
 

---

Posted by paulamea (Member # 11365) on :
 
WHY????????

Well let's see now, i just re-read some of Christie's post from the beginning again and found about 5 links that I had not paid attention to that were great. I am not as current on the lyme info as I was about 2 years ago so would very much appreciate up-to-date info. I hope to present a program at the school PTA at some point and have been gathering this for a while but, like I said, lots of my stuff is older and current info would be great. But if you'd rather not post it here, I can continue to search and found it. Guess I was just asking for a short-cut..
 

---

Posted by Lymetoo (Member # 743) on :
 
Treepatrol's links:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=029917

Wild Condor's Links and information:
http://www.wildcondor.com/lymelinks.html

Would others please join me in asking for this thread to be moved to General Support?

[email protected]
 

---

Posted by Kendrick (Member # 10990) on :
 
Hello Christi. I was treated poorly by a few when I first came here as well. This forum is just like any other group in life.

You have the nice people, mean people, incompassionate, and the compassionate. Again, just like the real world, school or any other group of people. Let this be a lesson to you in psychology(you can learn from anything and everything in life--> observe everything).

The fact that you're 15 years old does not mean you can't think, have emotions, or can not teach someone something. You are going to be a woman soon, and the time will come faster than you know it.

You must understand that on this forum, you're speaking to older adults. You may want to talk more in the teen chat.

Remember to never stop strengthening your body and your mind, and never stop fighting for your life. We need you to get through this somehow, because you could be a future surgeon who saves someone else's life. Get better from this, and you can accomplish anything you want. You're the future.

It's not going to be easy. Just keep at it. I'm not going to 'sugarcoat' it. You have a very difficult situation.
 

---

Posted by wilsongal22 (Member # 11210) on :
 
You know, I hate when people fight. You guys are acting like 5 year olds. Saying stuff back and forth and I am caught in the middle.

I really appreciate the defense. lymewreck really knows. That was a great post.

I am trying to be more positive so I am not going to think about the negative posts here. I just here to have someone to talk to and help answer my questions.

I am sure many of you had to be like me when you first came here.

About those questions, I did order the brochures and show my parents. I talked with my mom about it more last night until she finally made me cry and I left. I told her what 'I' wanted done. She basically rejected and refuses to just throw it all out there. My parents are going in a different direction than I am.

Ok, I am trying here. You guys keep accusing me and thinking bad things about me. I am a good person and I am doing my best. Obviously my best is not enough, but I am trying to make it better.

I couldn't get up the nerve to talk to a teacher or anything, but I have explained everything to my best friend. She seems to be the only one who can understand me here in person. Everyday she asks how I feel and everything. So, today I sat her down and told her everything. I spilled it all out on her shoes. And guess what, she is 15. I know she can't do anything, but she is there for me.

And being the age I am, she can understand how hard it is.

Now, I don't want you guys to fight about this. It is not what this place is for. We are here to help each other. Give advice, help, support, ideas, and everything, not fight about stupid stuff. Its like listening to my parents fight about dumb stuff like the water purifier and stuff. It is pointless and disappointing.

How is all of this helping me? You guys are accusing and getting mad at me and each other. We are supposed to work together. And I am sorry if I can't be everything you want me to be, but I can't. I am trying.

You guys need to pull it together and stop all of this crap.

I am sorry about talking about my day, but I was HOPING someone could shed some light on why these things are happening to me during the day. And whether or not it is 'normal' or whatever.

I tried the garlic and it made me sick when I bit into it so I have only taken a few bites since then. It makes me feel really sick.

I think lymewreck said they would write a letter to my parents. I could do that. I would give it to them and see what they say.

See there, that IS something a 15 yr. old can do. I plan on driving myself everywhere when I do turn 16 so I promise then I will be able to do more.

Like one person who was talking about there parents, my parents aren't talkers. I don't talk to my parents a lot. I never really have. I have been to myself sort of. I get scared talking to adults of any kind. That's why I like to talk on here. I don't have anyone else. I feel comfortable on here because I don't have to say it directly to you.

Also, my parents don't abuse me. But, I thought it was a good example.

And the writing thing would be ok, but I don't like to read so I am not sure if I could be a writer! But, thanks for saying that. Maybe one day I will write a book. It would be really fun. And I would like to tell me story from a teens perspective.

And, yes, I can afford the test. It would be tight, but I could do it. I told my parents it was best. I told them to get me tested and they said ok. But then I said through Igenex. And they didn't respond. I told them it was the best place to get it done. But, I don't think they like the price.

I think I am getting tested Wednesday. My mom said she was GOING to talk to the doctor about it then because she believes I have Lyme. So...

Ok, I can't remember everything else so I will have to go back and read it again.

But, for now, I have A MEDICAL QUESTION(!!!), today I experienced this weird thing. I was fine talking to some friends when all of a sudden I got this really sick feeling in my stomach. I got a headache and then I got really red in my face.

I started getting really hot. Usually I am cold sensitive and I wear a fleece jacket year round! But, I started burning up. I took my jacket off and I was so hot. Heat was just radiating off me. I got really tired and had a bad sick feeling. I had to lay my head down and try to relax and sleep.

I figured if I slept it would go away. I woke up and I was still the same. Hot, red, sick, headache, and really tired. Everytime I tried to get up I felt really sick. I had to leave for lunch and it was not as bad, but lasted around an hour.

After lunch, I was still hot and felt bad. I had eaten just just before this all happened so it wasn't that.

Finally, my face started to lighten up. And I started feeling better. Now it is about 5 hours later and I feel much better. I am not hot anymore but I still have a little headache (probably from really all the hatred comments on here). After the hottest stop I was cold again.

What was this? Has it happened to any of you?

It kind of scared me. I didn't know what was happening. Or why I felt like that.

Well, I can see I shouldn't write long comments, so, I will go back and read again so I can answer the stuff I missed.

But, for those who are arguing against me, find something better to do. There are sick people on here who want help and support. So go help and support them. As for those who commented in my defense, thanks, you guys are the ONLY reason I haven't left this place yet.

I mean, it is the ONLY support and help I am getting so...I don't have a choice, besides I like it here. Most of you are very helpful. But, some, like my doctors, are irritated that they can't help me and I am not doing anything.

Not my fault and I do feel guilty, but I can't do anything about it. I wish I could help myself, but I can't, some people just need to understand that. I tried talking to my parents and it didn't help nothing but my self-confidence, it helped it go DOWN.

Well, I just want to say thanks, and that even though I should be discouraged by this I am NOT giving up and I am NOT letting this get to me. I can't if I want to get through.
 

---

Posted by wilsongal22 (Member # 11210) on :
 

quote:

---

Originally posted by TNJanet:
OK, once more I'll try again..........

Something isn't right here. SO MANY people have offered help in myriad ways and as far as I can tell, none of the advice has been acted upon.

We are either being snoockered, or this "15 year old girl" needs serious counseling. Either way, I think all the efforts of caring folks here have not changed a thing for Christi. Until she takes charge of her situation and takes up the offers of help, nothing WILL change.

Christi, have you mentioned to either of your parents that there are adults on LymeNet ready and willing to speak or write to them? I have seen nothing here that suggests you have. If not, why? You have used excuse after excuse as to why you can't talk to your parents. Why not print out this thread and leave it on your kitchen table or somewhere they would read it.

I told myself I would not respond to this thread again. I am a compassionate person and try to be positive but no matter what a person's age is, ultimately if change is to occur, they have to make the moves towards change.

And Christi, if you are as sick as you have reported here, you can forget going to school this summer, riding your bike, participating in any activities, including working with your father. Lyme disease is serious. Left untreated, it can ruin your life and is not something to just complain about.

I wish you well,
Janet

---

quote:

---

Originally posted by TNJanet:
Lisabeth,

I am very glad you will be listening to Christi's sharings of her situation. If you have read all of her posts, they have gone on for well over a month and she has not acted upon any of the VERY well-meaning and good advice she has been given.

After you have been here a bit longer, you may understand why many of us are skeptical. We can only offer help so much and then the rest is up to the one who is asking for help. I haven't noticed Christi actually asking for help, but just venting.

The medical thread is not for venting about one's day and all the things that were wrong with it. If everyone here posted facts about their days here on the medical thread, the moderators would probably have to start a new thread....something like "All the problems Lyme caused me today" and it would overload the system.

We are here to support each other, exchange information regarding Lyme treatment and where to get it, post new treatment protocols, etc. Yes, we are here to listen, especially to people having a meltdown or just having a very difficult time.

You can go back through older threads here and I doubt you will find another one that goes on and on like this one has. However, if you really want to listen to Christi, why not PM her and offer to do just that. Then she can share with you all her problems and excuses why she can't get help or talk to her parents. That way, the general population here won't get sucked in to this ongoing diatribe.

Glad you are here,
Janet

---

quote:

---

Originally posted by lymewreck36:
For TNJanet and others who are "skeptical," I have been following Christi's posts since the beginning. Christi has approached her parents on several occasions about lyme disease, only to be discredited and rejected for her opinion. Her parents are following other leads, and when Christi feels like she can't take anymore, she often feels pushed away by them.

I lived this as a young person undiagnosed with lyme. It is exactly the same feeling as living in a cage.

An under-age child is powerless under her parents to direct her own medical care.

How many of us have lost friends and even spouses that wouldn't believe us. How many of us have lost insurance, jobs, hobbies, passions.

And then how can those of you who suffer with this expect a 15 year old girl to get this situation under control with out her parents help.

Christi has asked for help with herbal remedies because she can act on that without having to fight her parents or other adults. Example....eating garlic.

Example two, I suggested she order the three free lyme borchures on lyme disease, getting several copies. I sent her the weblink to order. She ordered them and sat down and shared them with her parents.

Example three, one of her most recent posts in this thread describes her having a converstation with her parents on the subject of her illness, trying to convince them it is more than her parents realize. She describes the difficulty she has with communication very well. She should be a writer.

She is so genuine it is hard to believe someone might think she is not. She tried to paint the big picture for her parents, the clustering of symptoms, so they would stop looking at just one body system and seek an answer to the entire thing.

From time to time, it does appear that her post would be more appropriate in "general," but many times her long posts begin with a medical question, and then there are so many responses it just gets a life of its own and becomes very long.

I once read a VERY long post in medical questions that included jokes, lyrics, personal stories, and an entire host of other material as the thread grew.

Nevertheless, Christi should post daily reports in General when possible.

The point, however, is that if you don't understand Christi's "lack of action," then you were not sick as a young person, you had unusually understanding parents who think outside the box, and/or you do not have teenage daughters of your own.

I realize I am opening myself up to attack by making this defense, but it has to be done.

Things Christi needs to respond to.

1. Have you shared the information about the lyme doctor in lower Alabama with your parents. Do not, at this point in time, include the discussion of him possibly stopping treatment. Just get there and get the testing done.

2. Do you want me to fashion a letter to your parents.

3. Have you confided in a school nurse or counselor and asked for a go between with your parents to push the idea of appropriate lyme testing.

These questions have been asked, and as far as I can see, they have not been answered. Whatever is holding you back from addressing the three above issues, please post an explanation so people will stop accusing you of not taking care of them.

I can collect some links that explain why lyme testing is inaccurate for you to present to your parents. This will help explain to them that just any old lyme test where you live is not going to be good enough.

Have a good day Christi,

mary

---

quote:

---

Originally posted by kelmo:
LISABETH?!

You joined Saturday?! How could you have been following this saga?

Fellow Lymenet users. Don't you realize that all this space wasted by a blog on the medical board causes useful information to be dumped for space?

I don't want to lose those precious experiences.

Move this to another thread, or private message this person.

---

quote:

---

Originally posted by cave76:
TNJ said:

****Something isn't right here. ***

Others have said it also.

As I wrote on another thread, (that just got deleted ), in the last 6 months or so there have been many of these 'new' members show up and jerk everyone around.

"Jerk" is the operative word here.

At least they don't use foul language, like at sci.med.

---

I have to be honest and say I don't understand. I am not jerking anyone. I didn't even know about this place until a member from here told me about it and invited me. She said I could find help so...now I am here.
 

---

Posted by wilsongal22 (Member # 11210) on :
 
Wow, I just read the bio for TNJanet, it said former psychotherapist??? Hmmm....interesting. That's cool to me, but weird in another sense.
 

---

Posted by wilsongal22 (Member # 11210) on :
 
I have a question....

How come when I put in the # for TNJanet and typed in a search the third thing to come up says, " Good News for Wilsongal *Christi* "

What does that mean? How come it says the thread I am trying to reach is nonexisting?

I want to know what it was. Obviously it was about me, but why is it there and nonexisting anymore?

Anyone care to comment?

Much appreciated!
 

---

Posted by lymewreck36 (Member # 4395) on :
 
O.K. I had to drive my two older daughters to dance class.

And I remembered something else to say to "Janet." I'm sure Janet is a nice person who just hasn't had the life experiences I have had, so we are going to see this differently.

But I will tell you that when I lived in CT, TICK CENTRAL, there were plently of Girl Scout Leaders (myself one of them), Landscapers, teen age soccer players, etc. that had lyme pretty bad and were trying to continue their lives and activities.

My three girls have lyme and have to have their medication, tire easily, oldest has asthma, etc., but the oldest played varsity soccer one season and the next season did cross country.

Yes, she was the last runner to come in every time, and yes, she ate dirt often when she fell, but she refused to give up that thing she identified with.

The most horrible experience I had with a LLMD here in lower Alabama is when he asked what my daughter's grades are, and when I reported she made straight A's, he said we needed to stop treating her because she was not sick. This because she made good grades.

Now, most of us know that lyme manifests differently in different people. Some are more neurological, like my middle daughter with cognitive and memory deficits, and some are more arthritic, like my oldest and youngest, and some are unfortunate enough to have been bitten multiple times and have it all, like myself.

Yet, I run my home, with tremendous struggle and internal warfare. We plan our summer vacations. All of this does not mean we are not sick. That would be pretty simple minded to think so. I see people at the hospital swimming pool with MS, but get to water aerobics.

My oldest daughter is attending a medical forum this summer for high school students interested in Medicine. She will be in Boston to meet with hospital staff and doctors. And she has lyme. Should she stay home from all summer activities because she has to carry around several medication bottles and inhalers?

She will never be surgeon because of the lyme arthritis in her poor hands, but on with life if at all possible.


Mary
 

---

Posted by lymewreck36 (Member # 4395) on :
 
Christi, I will try to send links to you regarding testing accuracy since she might try to test you this week, i think you said.

Give me a week to compose a letter. My husband is in India for business right now and I'm barely managing the house and kids on my own, so it will be pieces of time here and there to get a letter together.

I never just write something quickly. It has to be crafted you know. :-)

Mary
 

---

Posted by lymewreck36 (Member # 4395) on :
 
I'm so sorry. One more thing.

Let it be known that teen age girls are strange, moody creatures, hard to understand and get through to......when they are normal healthy subjects!

Add illness to that, and wow! good luck.

Mary :-)
 

---

Posted by wilsongal22 (Member # 11210) on :
 
Wow, I wish my mom could do all that. You sound really busy and like you have your hands full. No wonder you understand so well! Thanks.

I am the same way until now. I make straight A's. But, this time I had an...85...in Algebra 2. I kicked myself so hard and cried. That has never happened to me. I was so upset with myself.

I am working very hard right now to make it better. To not let it get to me. It upsets me because it will be on my transcript and stuff and I have only made 3 B's in the past 3 or 4 years.

I admire how you can hold down your family and you guys are all sick. That takes effort and I admire it.

I wanted to apply for that same medical thing, but it costs a lot to go. I was invited to 5 Leadership Conferences that dealt with medical stuff. I could have gotten my school to pay for it because it makes them look good because not a lot of people get invited, but I was worried about getting sick and not being able to come home.

I didn't want to worry myself and get sick and everything. But, I would have loved to go to the hospital and meet the doctors. That would be the GREATEST thing ever for me!! It would be such a great opportunity. Maybe next year.

I mentioned applying for the East TN State University Med Camp...and I didn't get in. Only 20 people get in and only 5 are from surrounding states, but I will try again next year.

I agree with the continuing to do activities part.

Well, thanks.
 

---

Posted by wilsongal22 (Member # 11210) on :
 

quote:

---

Originally posted by lymewreck36:
Christi, I will try to send links to you regarding testing accuracy since she might try to test you this week, i think you said.

Give me a week to compose a letter. My husband is in India for business right now and I'm barely managing the house and kids on my own, so it will be pieces of time here and there to get a letter together.

I never just write something quickly. It has to be crafted you know. :-)

Mary

---

quote:

---

Originally posted by lymewreck36:
I'm so sorry. One more thing.

Let it be known that teen age girls are strange, moody creatures, hard to understand and get through to......when they are normal healthy subjects!

Add illness to that, and wow! good luck.

Mary :-)

---

quote:

---

Originally posted by lymewreck36:

I sent you a Private Message explaining the missing post

---

Private Messages are a good thing!!!
 

---

Posted by lisabeth (Member # 11725) on :
 
i hate this turned out like this but sometimes it needs to happen because how else do we grow in character!!!!!!!!!!

lymetoo and janet, etc.
I will keep my mouth shut about being called a "jerk".
I did just start on the forum saturday but i am smart enough to do my research and use my heart and my experience.... You don't know my life or me by reading about me since saturday so please i ask you to not judge me like that! If you knew me you would know that I am a very kind and compassionate and a great wife and mom of three beautiful little girls. I can go on about my life and my experiences but it would take up this forum....


Christi, I am dx. with ms and now bedbound because of my heart and now i'm thinking i may have been misdx. and i may have lymes...
And i want to say that because of my search for what may be wrong with me I found this place and learned way more then i thought i would mostly by hearing others story. Just saturday we went fishing and yes a powerchair can get me to the fishing hole (ha ha)
my daughter was bit by a tick and now she may have rocky mountain spotted fever and the doc. said to rush her to hosp. by ambulance if she doesn't get any better by tonight. she was started on antibiotics and blood work done and the doc. said this is going to be a long hard road to see if she has it and if the meds. will work...........

MY POINT IS..... God led me here on Saturday to become part of this forum I thought it was for my illness but instead it was to be educated on this disease and now I knew what to do to help my daughter......... WHAT A BLESSING!!!
and unfortuntly i was attacked for being that new and being able to comment on your post....
but i am a big girl and i can handle it.
i just want you to know i think you are a very strong and mature person and you will do great in all you decide to do. and i would love to one day read your story if you decide to write it!!!

huge hugs from the ones who care!!!

love lisa
 

---

Posted by wilsongal22 (Member # 11210) on :
 
Thank you guys so much.

I feel that way. I am working on emotional stuff. I am not really 'close' to anyone now. I don't really have a person I talk to about everything. I used to tell me grandma everything, but she died 2 years ago May 20.

So, it has been hard because I NEVER told anyone else stuff. I am not big on hugging or any of that. Like I said I am not close, open, and I guess I am weird.

I do blame myself sometimes, but I don't really blame anyone for what I am going through. Sometimes when I go through one of those 'moods' I feel like I am being punished and I blame myself, but I know for real that it is just life. And I just have to keep going no matter what.

Nothing can get me down and I just have to believe in that. I know someday I will have my answer and I will be able to share it with others and I can go back and tell everyone. Once I know for sure I am ok if I tell the world out loud.

It's just I don't have an answer to tell people. If I have Lyme and I am dx with Lyme. I will not be ashamed to say "Hey, I have Lyme Disease". It won't matter. I won't care to tell anyone what I have, but when I have nothing to tell them it is a different story.

I was wondering if anyone had any answer for what and why I experienced that 'hot sickness thing'.

Well, thanks so much. This means a lot to me, really. You guys have no idea how just 3 months on here HAS changed me for the better. Whether you think I have changed or not, I really have. I HAVE gotten worse, but I know more now and everything. I have more support and more people who care than ever!

They should have some kind of award for this! Like 'greatest people' or 'most helpful' or something! Well, I appreciate everything and I need to get to bed. School. And I am already worrying about the doctor on Wednesday. But, I am taking deep breaths and trying to think positive and not be scared or have anxiety that makes me sick.

So, thanks for everything. See ya!
 

---

Posted by wilsongal22 (Member # 11210) on :
 

quote:

---

Originally posted by lisabeth:

lymetoo and janet, etc.
I will keep my mouth shut about being called a "jerk".
I did just start on the forum saturday but i am smart enough to do my research and use my heart and my experience.... You don't know my life or me by reading about me since saturday so please i ask you to not judge me like that! If you knew me you would know that I am a very kind and compassionate and a great wife and mom of three beautiful little girls. I can go on about my life and my experiences but it would take up this forum....


huge hugs from the ones who care!!!

love lisa

---

quote:

---

Originally posted by lisabeth:
lymetoo and janet, etc.
I will keep my mouth shut about being called a "jerk".

---

Show me where I called you or anyone else a jerk.
 

---

Posted by Health (Member # 6034) on :
 
I agree with Kelmo,

You are going on and on and on.

It is very irritating, because nothing is really being said. I know that lyme makes us crazy and sick and nuts, but sometimes

we have to be told we are acting crazy, being nuts, being a pain in the *_)(_)(, to

realize. I have been told this, and it hurts a little, but I know that it had to be done.
I am trying to do this nicely.

If we are made aware of when this happens with each of us, we can then become aware to not do these things again, it may take some

time, but eventually our brains can register.

So, all said in good things.

I am not meaning to hurt you Christi, just make you aware that this is going on too much, too long, sometimes we just go on and on, but then we realize this and move on, this is not happening, here. This is my view, not meant to be mean, just honest.
So, be well, and get well.

Trish

[ 01. May 2007, 01:09 AM: Message edited by: Health ]
 

---

Posted by fancykat (Member # 7857) on :
 
Wow.
I truly can't believe how nasty people can get. It makes me sad. And it's nastiness beneath a thin veil of "trying to help".

Why the nitpicking about where in the forum this discussion has developed? I've seen oodles of topics posted in the medical forum that are patently not medical.

If you read back to the first post, Christi began by asking if there were any remedies she could look into on her own in the meantime. Is that not medically related? But her question still was not answered. And in effect, she received snipey responses.

Did it occur to anyone that she is a minor whose hands are a bit tied at the moment? That there is a lot of frustration that goes along with that predicament? That perhaps she doesn't need the added pressure of people barking at her on a site that is supposed to be helpful for her?

Did it occur to anyone that maybe she just needs someone to talk to? Or greater than a number of one person to listen to her? Maybe she just plain needs to talk instead of being jumped on for not getting testing done quickly enough? If those of you who are complaining don't want to deal with it, then don't read the posts...instead of launching an attack.

However suspicious you are, distrusting you are, angry you are, sarcastic you are...it doesn't look pretty. There's already enough ugliness in the world. Why promote more of it? How about "love thy neighbor"? Isn't that how it's supposed to go? Not "love whoever I want and beat down anyone else who does not agree with my way of thinking"?

I just couldn't let this pass without saying something. Because it makes me feel embarrassed to associate with a community where there is so much ugliness abound. It happens all the time. And it makes me wonder what the heck is going on here, and certainly undermines the professionalism required to present this illness to those who are new and looking for answers.

Christi. It's cool. And I think you are pretty brave to tolerate the bashing. And I for one don't mind lending an ear.

Oh. Let me add this edit to the post. The sick flushed feeling you were experiencing: I've had the same thing happen and never found out what caused it. I do know if you have a potential heart stuff, it can cause symptoms like that. I have mitral valve prolapse and although not serious, it can give me some real pain in the butt symptoms, i.e. flushing, rapid heart rate, feeling faint, feeling feverish. So when you go to the cardio, maybe they will be able to associate what you experienced with a heart issue.

I've also noticed that when I have not known what is going on with me and I'm feeling ill, I tend to be hypersensitive to everything my body does. It's normal, and many things will just plain not have an explanation. But when I'm generally feeling better, the weird daily quirks I experience are much easier to tolerate. Hope this helps.

And you are a great writer. I think the idea about starting a blog is a fantastic one!

[ 01. May 2007, 01:06 AM: Message edited by: fancykat ]
 

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Posted by paulamea (Member # 11365) on :
 
Just sticking my 2 cents in for a minute, Christie's posts started almost 2 months ago (in several others posts) but they are still the same problems and seem to be getting worse. It's so frustrating to read about them when we know there is help available and it has been offered to Christie but in Christie's situation it just hasn't been possible for her to accept it at this time.

I e-mailed the moderate to ask if there is some place appropriate to write about our personal stories or even a diary...I don't know about the links in signature stuff...

Anyway Christie, I found two links today that you might be very interested in if you haven't already read about them.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=015780


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=017388

The first is a Lyme chat-room for teens, the 2nd is a story very similar to yours, she's 13.


Hope you find this helpful
 

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Posted by Geneal (Member # 10375) on :
 
Christi,

You read and respond, but I am not sure you really understand.

Yes you have symptoms that can be Lyme.

Every symptom you bring up could possibly be attributed to Lyme and/or co-infections.

It was "tight" for me to have my kids tested as well as my mother via Igenex.

However, I do realize that this may be one of the single most important things I can do for them.

When you turn 16 life does expand if you get that driver's license.

However, I have been unable to drive at times due to Lyme and/or-coinfections.

It is not like this magical number thing where everything changes now that you are 16.

Same goes for age 18 and 21.

We all have confinements that we must work from.

Whether it be family, lack of funds, inability to get to a LLMD, etc.

Part of getting older should be also getting a little wiser.

I do care about what happens to you......

I hope that this experience helps you to grow emotionally as well as personally.

We have all had negative posts on this board.

Sometimes criticism is not always constructive.

So........

I am not criticizing you or your situation, however, I would suggest

that you spend less time responding to posts deemed "critical" by you and focus on

What it is you really need.

The only person(s) you need to satisfy are yourself and in this case, your parents...

I also wonder where your faith in all of this?

Sometimes we face situations that make us grow up faster than we should.

I believe this is one of these situations.

Take the good advice and the negative comments and understand that most

Adults here do understand your symptoms, however,

Are continually frustrated by the on-going saga without an end (or beginning if you do get dx with Lyme).

You did come to the right place for help....

I think you need to get a little aggressive about helping yourself too.

So what if the Igenex test is a little expensive...

If it is your money, and you earned it then you should be able to spend it on something reasonable.

I WISH I had known about Igenex prior to being tested for Lyme....

You do have an opportunity here.

Opportunity to learn.

Opportunity to grow and mature.

Opportunity for support.

Opportunity to get a diagnosis.

I am continuing to pray for you and your parents,

and am hoping/praying your heart testing goes well.

Just a gentle reminder that you need to be part of the solution....not just part of the problem.

Hugs,

Geneal
 

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Posted by lymewreck36 (Member # 4395) on :
 
O.K. Christi. This is coming from Mary. Try to keep all "daily posts of diary material" in General. O.K. If you feel the urge to start a post with "today if feel...." or "today I fought with...." or something like that, take it to general.

When a medical question has been addressed, do not respond to any other posts. I will P.M. you if a post in Medical takes a life and ends up general support. And then extend the discussion in general so as to be as pure as possible with limiting Medical to medical questions.

People here do understand the need to keep medical for medical. There are a lot of good reasons for that that you cannot understand at this point.

So let's just make that the new formula from this point on. It needs to be done asap.

Mary
 

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Posted by lisabeth (Member # 11725) on :
 
Christi, I found out not long ago that i am orthostatic intolerant. which means my heart rate is normal laying down flat and when i go to the standing position my heart rate goes sky high and my body goes into a fit. but if i am sitting in my wheelchair too long with my legs down my heart starts to rise and my body feels this flush feeling like you were describing earlier. so what i am saying is there could be a connection there with the heart for you...my suggestion would be to get a wrist bp and heart monitor to keep an eye on your heart rate to see if it changes when you feel that way...
also i was wondering if you have a myspace profile??? i am going to give you my profile address and you can go to it and see my page where i can express who i am and i have great slide shows of my family and i also just put a video on it about the struggle with lyme disease to hope for more awareness!!!

my address is


http://www.myspace.com/myjobisaparty

Big Hugs to you Christi...from Lisa
 

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Posted by wilsongal22 (Member # 11210) on :
 
Ok, thanks. I do agree medical should be in medical and general in general. But, I think I go on about my day because it has medical situations in it I have questions about. I just forget to put the question part.

I will try to seperate the two from now on. I just get confused and lost when I have more than one post going at a time. Like the blood test one from this one and all of it is confusing to me.

That was a great post by fancycat.(think I got that right.) I DO understand, ok. And thanks for whoever answered the question about MY DAY AND THE WEIRD HOT FEELING I experienced.

So, still could be associated with Lyme? It could be a symptom of a heart problem, right?

For those who care, my doctor called today and I have to go tomorrow(very scary) and they want me to go Huntsville(2 hours away) just for my Echo. We told them NO! We want it done here. And they want to send me to Vanderbilt(3-4 hrs) just to see a Ped. Rheumy. Can you believe that! We said NO again!

I think word got out about me being a hard case and they are trying to kick me out of Florence! lol

I am very scared about tomorrow. The doctor tomorrow is supposed to send me to the others. The only reason I am GOING to see him is so my mom can get me tested for Lyme. Just to see what happens with the local lab. And so she can push him about me having Lyme! So, it my be good. But, I am SO NERVOUS AND SCARED TO DEATH.

Should I get the test results myself and post them here if I can? I mean, whether or not they tell me it is pos. or neg., should I?

Well, thanks so much and I have one other request, those who keep telling me to go to general...I am asking medical questions right now so...I am staying here until I have something general.

And last night I was reading everything on medical that wasn't medical and no one has said anything to them. I think it is just because my post has grown to over 100. Which I can't help. It would be a lot less if people would stop arguing about stuff.

And I know you guys are just trying to be nice about it, and I understand your point. But, I will try to put my "day" story into the medical question I am trying to ask. Thank you! -Scared About Tomorrow-
 

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Posted by wilsongal22 (Member # 11210) on :
 
Oh yea, sorry, my myspace is

www.myspace.com/wilson_gal22

I think! Pretty sure. Let me know if there are any problems with it, because last time people had a hard time getting on it. But, just let me know and I will fix it.

Thanks!
 

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Posted by wilsongal22 (Member # 11210) on :
 

quote:

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Originally posted by lisabeth:
my suggestion would be to get a wrist bp and heart monitor to keep an eye on your heart rate to see if it changes when you feel that way....

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