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Old 01-05-2010, 07:22 AM   #1
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Post My daughter's blood test came back reading she has lyme disease.

My daughter's blood test came back reading she has lyme disease.For months she has been hurting in her knees and then now in her wrist and hands really bad pain. So now they say she has lyme disease.They say she has had it for quite away.Which she didnt know she had it until it is causing her so much pain.I feel so bad she is in so much pain.It hurts me to see her that it is affecting her hands she can't hardly use them.Now she is hurting all over.They put her antibotics but didnt help.Can lyme disease be fatal? Dont no much about it.

 
Old 01-05-2010, 09:11 AM   #2
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Re: My daughter's blood test came back reading she has lyme disease.

Hi DenBever.. I am pretty new to Lyme disease myself and I am waiting to hear about my blood work, but I know its Lyme since everything else was ruled out already.
I dont think Lyme is fatal, but if untreated I guess it could come to that. Not sure though. From the reading I have done so far, there was a fatality, but its not the norm.
How long has your daughter been on antibiotic? Are you seeing a Lyme Literate Dr? I ask because its important to have a Dr who is knowledgeable in Lyme and will know how long and what antibiotics your daughter should be on. She may need to be on two different antibiotics at the same time. How old is your daughter?

I am sorry she is in so much pain.

 
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Old 01-06-2010, 06:57 AM   #3
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Re: My daughter's blood test came back reading she has lyme disease.

Quote:
Originally Posted by ocean10 View Post
Hi DenBever.. I am pretty new to Lyme disease myself and I am waiting to hear about my blood work, but I know its Lyme since everything else was ruled out already.
I dont think Lyme is fatal, but if untreated I guess it could come to that. Not sure though. From the reading I have done so far, there was a fatality, but its not the norm.
How long has your daughter been on antibiotic? Are you seeing a Lyme Literate Dr? I ask because its important to have a Dr who is knowledgeable in Lyme and will know how long and what antibiotics your daughter should be on. She may need to be on two different antibiotics at the same time. How old is your daughter?

I am sorry she is in so much pain.
Hi ocean thanks for repling. My daughter is 37 has 3 children and boy this has affected everyone.It just seems like her pain is spreading fast. Now she said it feels like a bus has hit her . Her whole body hurts.Oh i hurt for her. I pray all the time that God will help her and i guess i have to leave it in his hands. But were human and i still feel so bad for her. My daughter use to laugh ,joke and now its gone.What are your symptoms?

 
Old 01-06-2010, 08:03 AM   #4
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Re: My daughter's blood test came back reading she has lyme disease.

Hi denbever, I am so sorry for what your daughter is going through. I have been dealing with lyme for atleast 29 years.

And I don't want to scare you with anything I say. But you do need to know what your daughter is up against. And then possibly you can help get her to the right doctor.

She needs to go to a Lyme Literate Medical Doctor (LLMD) a doctor that specializes in Lyme. Going to the run of the mill everyday doctor, they will only do her more harm that good UNLESS they know about lyme.
Putting a person on just one antibiotic is not good. There are 3 life stages to the bacteria. So a person needs to be on 2 to 3 different kinds at the same time. And they need to be on the antibiotic until all symptoms are gone. Doing 4 to 6 weeks is never long enough.

Yes Lyme can be fatal. There are people that have lasting effects of the bacteria and it's co-infections. Some people die from it. some people remain in wheelchairs, or mental hospitals.
Do you know that Lyme is in the Syphillis family. They are spirokettes. They love every inch of the body.

It is said that Lyme is transferred to unborn children. So if your daughter was pregnant the children truly need to be watched for signs of infection. Or even tested for it.
But then the test are NOT accurate for lyme. So they too should see a LLMD if they are showing signs.

You possibly should try very hard to find a Lyme Support group in your area. And contact them and see whom they suggest your daughter go to.
They are not cheap. And a huge percentage of the doctors do not take insurance.
This is a very political disease as you will find out. And the general population of doctors will not treat it or they will only do 4 to 6 weeks of antibiotics.

There are also many supplements she should be on to help raise the immune system. So getting ahold of a Lyme doctor will help guide her in these.

I don't want to scare you like I said. But she truly needs some help.

Let us know how she is doing and if you have any questioins feel free to ask.

Jodie

 
Old 01-06-2010, 08:38 AM   #5
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Re: My daughter's blood test came back reading she has lyme disease.

Denbever... I am really sorry your daughter is having such a tough time. My first symptoms was a couple of months ago where my legs, feet, hands, and arms were numb (for 3 solid weeks) and incredible weakness at times. Scared me so bad that I ran to a neurologist and to make a long story short, ruled out all those diseases like MS, fIBRO, etc..
Other symptoms was shaking (on the inside, you couldnt see me shake) eyes burn, skin sensations like a burn, heart palpitations, stiffness in fingers/neck, chills,Brain fog, forgetfullness, fatigue, head rushes...
The one constant symptom to this day is my legs hurt all the time, like they have the flu. Very weird.
My brother and his wife both have Lyme and they got me in to see his Dr in NYS who is a well known LLDR. My first visit he saw all my symptoms and said "classic".. I will know more on the 18th of Jan when I go back and they have all the blood work in.

JOJO gave you (and me) some really good advice. Very important you get a lyme literate Dr, because all the others dont want to hear the word Lyme.

I will pray for your daughter, and let us know when she gets to a good Dr, and how it goes. (((hugs)))

Last edited by ocean10; 01-06-2010 at 08:59 AM.

 
Old 01-06-2010, 09:06 AM   #6
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Re: My daughter's blood test came back reading she has lyme disease.

wow thank you but my mind is going wow omg.Now you said you have had it for 29 years .So that answered my question. She will always have this.Have you gotton any better. If you had to say what do you think helped it .

 
Old 01-06-2010, 09:15 AM   #7
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Re: My daughter's blood test came back reading she has lyme disease.

Quote:
Originally Posted by denbever View Post
wow thank you but my mind is going wow omg.Now you said you have had it for 29 years .So that answered my question. She will always have this.Have you gotton any better. If you had to say what do you think helped it .
I know you arent asking me, but with Lyme, every person has a different story. My brother had a problem with his heart due to lyme, and has been treated for a few years and is almost done. People do get better, but every case is different from what I am seeing. My sil has had it in the brain, and got better,but relapses at times.
I dont know in jojo's case having it for 29 yrs, but some people arent diagnosed for many years.

Last edited by ocean10; 01-06-2010 at 09:16 AM.

 
Old 01-06-2010, 06:57 PM   #8
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Re: My daughter's blood test came back reading she has lyme disease.

Quote:
Originally Posted by jojo View Post
Hi denbever, I am so sorry for what your daughter is going through. I have been dealing with lyme for atleast 29 years.

And I don't want to scare you with anything I say. But you do need to know what your daughter is up against. And then possibly you can help get her to the right doctor.

She needs to go to a Lyme Literate Medical Doctor (LLMD) a doctor that specializes in Lyme. Going to the run of the mill everyday doctor, they will only do her more harm that good UNLESS they know about lyme.
Putting a person on just one antibiotic is not good. There are 3 life stages to the bacteria. So a person needs to be on 2 to 3 different kinds at the same time. And they need to be on the antibiotic until all symptoms are gone. Doing 4 to 6 weeks is never long enough.

Yes Lyme can be fatal. There are people that have lasting effects of the bacteria and it's co-infections. Some people die from it. some people remain in wheelchairs, or mental hospitals.
Do you know that Lyme is in the Syphillis family. They are spirokettes. They love every inch of the body.

It is said that Lyme is transferred to unborn children. So if your daughter was pregnant the children truly need to be watched for signs of infection. Or even tested for it.
But then the test are NOT accurate for lyme. So they too should see a LLMD if they are showing signs.

You possibly should try very hard to find a Lyme Support group in your area. And contact them and see whom they suggest your daughter go to.
They are not cheap. And a huge percentage of the doctors do not take insurance.
This is a very political disease as you will find out. And the general population of doctors will not treat it or they will only do 4 to 6 weeks of antibiotics.

There are also many supplements she should be on to help raise the immune system. So getting ahold of a Lyme doctor will help guide her in these.

I don't want to scare you like I said. But she truly needs some help.

Let us know how she is doing and if you have any questioins feel free to ask.

Jodie

 
Old 01-06-2010, 07:28 PM   #9
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Re: My daughter's blood test came back reading she has lyme disease.

Jodie,

So I am the daughter beverden is referring to. My name is Tracy. I have been diagnosed with Lyme and this is new to me. But it has affected my entire life. In fact, it has taken over my entire life. This disease has turned me into a person I dont recognize. I hurt so bad all the time. There is not much relief even with pain meds and I am on heavy duty stuff (like Morphine and Norco). I have heard so many opinions and from what I am seeing I have quite a fight ahead of me, but the thing is I am so tired I am not sure I have much fight left in me. Everyone tells me to keep my chin up and not to let it get the best of me but this kind of pain is unlike anyother I have ever experienced. I dont think anyone who has not ever felt this understands. Dont get me wrong...I know my mom and family hurt for me and feel bad and if possible would take my pain for me, but realistically it is me who cries myself to sleep at night. It is me who was once very independant and now relies on my family to do something as simply as pulling down my pants to use the bathroom or opening a door. These are things I should be able to do. Things that most people take for granted are things I struggle to do. I hate to get out of bed in the morning because the trip from my bedroom to downstairs feels like miles now. My hands hurt, my wrists hurt, and now my hips hurt. I have been twitching and have became irritable. My kids tell me on a daily basis that I have changed. My husband used to look at me with desire in his eyes ....and all I see now is pity. This is a very unfair disease. It would be nice to hear how you have managed for 29 years of this because I am on a matter of weeks and cant see how I can handle much more. I need to hear there is a light at the end of this long miserable tunnel. I need a friend who knows exactly "how I feel and what I am going through"! I would love to hear how you are getting by day to day. Most of all I need someone to tell me how to get my life back.

Thanks,
Tracy

 
Old 01-07-2010, 10:48 AM   #10
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Re: My daughter's blood test came back reading she has lyme disease.

[/SIZE]Hi Tracy,

On this board you will find many many people that understand exactly what you are going through.

I went EONS of years of misdiagnoises. And I mean years.

I will make this short, (maybe)..lol....

And I do agree with Ocean. Lyme can affect us all differently. With some people they just have for example, OCD problems. Or ADD problems...

With other's they have tons of symptoms. With some just a few symptoms.

From what I have learned there are 300 to 400 different strains of lyme. So you can have more than one strain.

Anyway I would love to be your friend. We all have had a very hard time getting help with this disease.

For now you truly need to find a Lyme Literate Medical Doctor. They cost money. Majority of them do not take insurance. Because of all the hub bub about Lyme and the long term antibiotic use.

I lost my job about 13 years ago. My house, a baby, the husband at the time, friends...ect ect...I am now on Medicare and still on medications. And tons of supplements.

With a new life....

This last year has really been good to me in the fact that I am no longer down in bed.

When we go years and years of being misdiagnoised our bodies break down, and it gives way to other things such as Epstein Barr reactivated, Cytomeglovirus....
I just found out this last year that I have lead poisoining....So just another little thing in my pandora's box.
I have gerardia (protoza) that flares up every once in a while.

So what I am trying to say is it isn't just lyme that you are battling. You most likely have a pandora's box of your own to figure out.

I can not say what was the best thing for me. I have done tons of things.
I guess the best thing is, is to find a Lyme doctor that is willing to work with you. That believes in you.

I suggested to your Mom since you are both new to the board and we can not give out Lyme Doctors names on here because of political reasons. And you can't turn on your Private messaging yet.
But from where you are sitting, search for a Lyme Support Group in your area. Or surrounding areas.
You most likely will find a contact number or e-mail address. Contact them and see if you can get the name of a doctor.

Going to your evey day G.P. and having more testing done is not the way to go. You know what you have, now you can start finding ways of getting treatments.

I my self have been on 10 years of antibiotics. I am sooooo very thankful that I have found a doctor and one before this one that would/will treat me.
I am also on antivirals. and tons of supplements. I also got a infared sauna about a year ago that I just love.

You should also be on Probiotics for the candida overgrowth that antibiotics and other medications cause.

Yes you I am sure are a different person. Being this ill, would change anyone. It changes brain chemestry, hormones ect.
some of us get swelling of the brain.

I like many people that have lyme have experienced the pain you are experiencing. I found nothing that helped. EXCEPT get on the right treatment plans and getting the immune system up.

Trust me I went through alot of suicidal tendencies. It was in my brain, and this is where majority of my problems still lie. I had a enlarged heart, enlarged bowels, enlarged kidneys, enlarged ovaries....almost in a wheel chair, couldn't use my arms and legs...told I needed surgery on my neck, back and wrist...(thank God I never did that)...the list goes on.....

Past the pain, and suicidal tendencies.

You truly need to get to a doctor that specializes in lyme. Not a Infectiouis disease doctor. They are like majority of the run of the mill G.P.s and treat for only 4 to 6 weeks on low dose antibiotics. Then the ones I went to told me that lyme doesn't cause all that I was going through....ugh!

Some people have done alternative therapy, and it has worked for them. I think it just all depends on each of our individual bodies.

Hang in there. Cry when you need to. Punch a wall when you have too.

Let your Mom and Hubby help you. It will make it easier on you. But still try and do what you can.
We are all here to try and help answer questions.....
Jodie

 
Old 01-08-2010, 04:10 PM   #11
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Re: My daughter's blood test came back reading she has lyme disease.

Quote:
Originally Posted by jojo View Post
[/SIZE]Hi Tracy,

On this board you will find many many people that understand exactly what you are going through.

I went EONS of years of misdiagnoises. And I mean years.

I will make this short, (maybe)..lol....

And I do agree with Ocean. Lyme can affect us all differently. With some people they just have for example, OCD problems. Or ADD problems...

With other's they have tons of symptoms. With some just a few symptoms.

From what I have learned there are 300 to 400 different strains of lyme. So you can have more than one strain.

Anyway I would love to be your friend. We all have had a very hard time getting help with this disease.

For now you truly need to find a Lyme Literate Medical Doctor. They cost money. Majority of them do not take insurance. Because of all the hub bub about Lyme and the long term antibiotic use.

I lost my job about 13 years ago. My house, a baby, the husband at the time, friends...ect ect...I am now on Medicare and still on medications. And tons of supplements.

With a new life....

This last year has really been good to me in the fact that I am no longer down in bed.

When we go years and years of being misdiagnoised our bodies break down, and it gives way to other things such as Epstein Barr reactivated, Cytomeglovirus....
I just found out this last year that I have lead poisoining....So just another little thing in my pandora's box.
I have gerardia (protoza) that flares up every once in a while.

So what I am trying to say is it isn't just lyme that you are battling. You most likely have a pandora's box of your own to figure out.

I can not say what was the best thing for me. I have done tons of things.
I guess the best thing is, is to find a Lyme doctor that is willing to work with you. That believes in you.

I suggested to your Mom since you are both new to the board and we can not give out Lyme Doctors names on here because of political reasons. And you can't turn on your Private messaging yet.
But from where you are sitting, search for a Lyme Support Group in your area. Or surrounding areas.
You most likely will find a contact number or e-mail address. Contact them and see if you can get the name of a doctor.

Going to your evey day G.P. and having more testing done is not the way to go. You know what you have, now you can start finding ways of getting treatments.

I my self have been on 10 years of antibiotics. I am sooooo very thankful that I have found a doctor and one before this one that would/will treat me.
I am also on antivirals. and tons of supplements. I also got a infared sauna about a year ago that I just love.

You should also be on Probiotics for the candida overgrowth that antibiotics and other medications cause.

Yes you I am sure are a different person. Being this ill, would change anyone. It changes brain chemestry, hormones ect.
some of us get swelling of the brain.

I like many people that have lyme have experienced the pain you are experiencing. I found nothing that helped. EXCEPT get on the right treatment plans and getting the immune system up.

Trust me I went through alot of suicidal tendencies. It was in my brain, and this is where majority of my problems still lie. I had a enlarged heart, enlarged bowels, enlarged kidneys, enlarged ovaries....almost in a wheel chair, couldn't use my arms and legs...told I needed surgery on my neck, back and wrist...(thank God I never did that)...the list goes on.....

Past the pain, and suicidal tendencies.

You truly need to get to a doctor that specializes in lyme. Not a Infectiouis disease doctor. They are like majority of the run of the mill G.P.s and treat for only 4 to 6 weeks on low dose antibiotics. Then the ones I went to told me that lyme doesn't cause all that I was going through....ugh!

Some people have done alternative therapy, and it has worked for them. I think it just all depends on each of our individual bodies.

Hang in there. Cry when you need to. Punch a wall when you have too.

Let your Mom and Hubby help you. It will make it easier on you. But still try and do what you can.
We are all here to try and help answer questions.....
Jodie

 
Old 01-09-2010, 06:51 AM   #12
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Re: My daughter's blood test came back reading she has lyme disease.

Hi denbever, your message got cut off....


 
Old 02-01-2010, 02:57 PM   #13
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Re: My daughter's blood test came back reading she has lyme disease.

Quote:
Originally Posted by blueeyez492 View Post
Jodie,

So I am the daughter beverden is referring to. My name is Tracy. I have been diagnosed with Lyme and this is new to me. But it has affected my entire life. In fact, it has taken over my entire life. This disease has turned me into a person I dont recognize. I hurt so bad all the time. There is not much relief even with pain meds and I am on heavy duty stuff (like Morphine and Norco). I have heard so many opinions and from what I am seeing I have quite a fight ahead of me, but the thing is I am so tired I am not sure I have much fight left in me. Everyone tells me to keep my chin up and not to let it get the best of me but this kind of pain is unlike anyother I have ever experienced. I dont think anyone who has not ever felt this understands. Dont get me wrong...I know my mom and family hurt for me and feel bad and if possible would take my pain for me, but realistically it is me who cries myself to sleep at night. It is me who was once very independant and now relies on my family to do something as simply as pulling down my pants to use the bathroom or opening a door. These are things I should be able to do. Things that most people take for granted are things I struggle to do. I hate to get out of bed in the morning because the trip from my bedroom to downstairs feels like miles now. My hands hurt, my wrists hurt, and now my hips hurt. I have been twitching and have became irritable. My kids tell me on a daily basis that I have changed. My husband used to look at me with desire in his eyes ....and all I see now is pity. This is a very unfair disease. It would be nice to hear how you have managed for 29 years of this because I am on a matter of weeks and cant see how I can handle much more. I need to hear there is a light at the end of this long miserable tunnel. I need a friend who knows exactly "how I feel and what I am going through"! I would love to hear how you are getting by day to day. Most of all I need someone to tell me how to get my life back.

Thanks,
Tracy

 
Old 02-01-2010, 03:11 PM   #14
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Re: My daughter's blood test came back reading she has lyme disease.

Tracy,
Hang in there. I completely know what you are going through. I am a mom of 4 kids and was extremely independent. Then some "super" tick I never saw, bit me on my head and gave me an unbelieveable case of neuro. lyme and several other gifts. I wont scare you with the details, but lets just say it was similar to your experience in many respects. I swore that if I had one more DR say that he was stumped, I was gonna strangle them with their stethescope.

The good news is that after 5 months of aggressive treatment, I have about 90% of my life back. When things were bad I'd get so mad and sad at the same time. Then I was too sick and tired to feel anything. But DO NOT GIVE UP! You wouldnt give up on your kids- so dont give up on yourself.

A few things you can do
#1 - read Burrascao's LYme guidelines. Google it and you'll find it.

#2 Check for a support group in your area. But please remember everyone has a different experience and sometimes too much info may scare you, but I believe in being informed.

#3 JoJo is right that you need a LLMD. I started with the ID route and I used to think that Lyme was a bunch of b.s ( sorry everyone:0)! But then Lyme dropped me like a bag of bricks and now I know how real and terrible it is. You have got to get someone to be your advocate- I can not tell you how important that is. Lyme is a complicated, cutting edge disease - you need someone who can think outside the box.

#4 DONT GIVE UP! EVER!! My current joke is that I think we "lymies" will end up living longer - because we will take such darn good care of ourselves.

Good Luck

 
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