Lyme's Anyone??

dachshundlover

New Member
My daughter has Lyme. The doctors thought I was a crazy mother because I would that her in the office with crazy symptoms. I finally took her to Childrens Hospital but it took them the admit her into the hospital after the second visit there.

She was stage 2. They did spinal taps on her. Her symptoms were rashes up and down her legs, not the bulls-eye rash, then her joints started to hurt - the last straw was - she couldn't lift up her arm.

After all the testing and a 5 day stay in the hospital - test came back positive with Lyme.

She get tired very easily now. But for the most part she is fine. She is 16 now and this happen when she was 12.

Good luck with the symptoms.
 

jaie

So happy!
Has anyone been anyone been so cold it hurts. That has been something I have been experiencing along with all pains too.
 

SouthernMdRocks

R.I.P. Bobo, We miss you!
I was diagnosed 3 months ago. I have had it a long time apparently. I went to hospital because my tongue and hand went numb for an hour and I blacked out and when my vision came back it was blurry for a while. also had migraines. Hospital did ekg, blood test, urine test and catscan. They didnt find anything wrong with me.

went to my doctor and he did blood tests and had me get mri. blood test came back positive for lyme and mri should a couple spots in brain where the lyme is starting to spread. i took doxycycline for a month. after that i had to get a picc line placed so i can give myself iv medicine every night. the medicine is ceftiaxone. i have been doing that for 2 months. a nurse comes to my work every monday to change my bandages and clean the line. started having stomach pain so my doctor is switching the medicine to something else next week. i forget the name of it. ceftiaxone causes gull bladder issues.

i have had a lot of symtoms. some are gone and some still remain. pain in joints, mostly my fingers and toes. they are sharp, stabbing pains that come and go. fatigue. hard to concentrate. forgetfulness. hard time remembering my words and i have to pause when talking to try to think of what i'm trying to say. other symtoms too but i cant remember. i'm suppose to get another mri in 3 months to see if the medicine is working.

i'm slowly getting better. i saw my doctor today and he ordered another 30 days. we go one month at a time and re-evaluate from there


Wow ,sorry to hear it was that advanced. My little girl had to go to the emergency twice, hands/legs/arms really numb and she was ready to pass out. They first told her she had the flu and the next time I forgot what they said. Her pediatrician ordered the blood work that came back positive.
 

hotmomma

mmmmhmmmmm
I have heard that there are some herbs that are suppose to help with symtoms. I can not think of the name of one of them that a friend told me about. I have not tried any.
 

jaie

So happy!
So I my test came back, I apparently am having a Mono flare up? I didn't know I ever had mono before. Anyone have any advice for me?
 

Purplefox

I AM an enigma

Not only has the Good Lord in all of His blessings given me Lyme, I also have a "form of mono" that is called Chronic Active Ebstein Barr Disease. Nasty, nasty, nasty. On top of that, the lymphoma scares and all that come with it are just icing.

I go to Washington Hosp. Center on Monday for a biopsy of my colon. When they did the PET scan for the Lymphoma, my colon lit up like a Christmas Tree.

I've tried laughing about all the trials my family has had in the past two years (those of you who know me....) but it has gone from comical to pure faith now.

Hugs and Prayers to all who suffer. Like I said....if God didn't bless me with all of this, I couldn't appreciate the good days.
 

popsicle

Member
Not only has the Good Lord in all of His blessings given me Lyme, I also have a "form of mono" that is called Chronic Active Ebstein Barr Disease. Nasty, nasty, nasty. On top of that, the lymphoma scares and all that come with it are just icing.

I go to Washington Hosp. Center on Monday for a biopsy of my colon. When they did the PET scan for the Lymphoma, my colon lit up like a Christmas Tree.

I've tried laughing about all the trials my family has had in the past two years (those of you who know me....) but it has gone from comical to pure faith now.

Hugs and Prayers to all who suffer. Like I said....if God didn't bless me with all of this, I couldn't appreciate the good days.



Wow sorry to hear all of that.... Let us know how your tests go.
 

Christy

b*tch rocket
My daughter has Lyme. The doctors thought I was a crazy mother because I would that her in the office with crazy symptoms. I finally took her to Childrens Hospital but it took them the admit her into the hospital after the second visit there.

She was stage 2. They did spinal taps on her. Her symptoms were rashes up and down her legs, not the bulls-eye rash, then her joints started to hurt - the last straw was - she couldn't lift up her arm.

After all the testing and a 5 day stay in the hospital - test came back positive with Lyme.

She get tired very easily now. But for the most part she is fine. She is 16 now and this happen when she was 12.

Good luck with the symptoms.

My daughter went 6 months being misdiagnosed even when I stated that it was probably lyme disease on her very first visit. :mad: Even when she finally was diagnosed and all of the apologies were said, I still had to deal with arrogant and inept doctors. I did much of the research on my own and I was fortunate enough to find a fabulous lyme literate doctor in Waldorf.

Some things that I have learned is:

You do not stop taking antibiotics until you go a minimum of two months without a Herxheimer Reaction Herxheimer reaction - Wikipedia, the free encyclopedia My daughter had a herxheimer reaction about every two weeks. She'd run a low grade fever and just feel generally crappy for a day or two. Her doctor kept her on antibiotics until she went two months without having these symptoms.

What many folks don't know is that when you have had lyme for a long period of time, you are very likely to get sicker before you get better once you start on antibiotics. This is due to the above link.

Antibiotics will wreak havoc on your digestive tract. Acidophilus helps immensely, and will take care of a lot of the stomach and digestive problems that come along with taking heavy doses of antibiotics. You can buy it over the counter at any drug or health food store.

The insurance companies HATE paying for lyme treatment because the CDC still has antiquated treatment parameters when it comes to lyme. 6 weeks of antibiotics and you're "cured" :duh:. There are many doctors who won't aggressively treat lyme disease because insurance companies have gone after doctors who do and try and have their medical license revoked due to over treatment. It may be better now, but several years ago this was the case.

Do not ever let your doctor demean you or tell you that you are crazy. If they do, find another doctor because your health or your child's health depends on it. I had an infectious disease specialist at Children's Hospital tell me that I had no idea as to what I was talking about when it came to lyme and that if my daughter didn't get better after 6 weeks of antibiotics then she didn't have lyme, and that long term antibiotics wouldn't do a thing. He was wrong and thankfully I didn't bow down and listen to the "professionals". I found a doctor that took lyme very seriously and treated my daughter properly and she has had zero lyme symptoms for many years now. :yahoo:
 

jsouthan

New Member
So I my test came back, I apparently am having a Mono flare up? I didn't know I ever had mono before. Anyone have any advice for me?

That is the same thing they told me, but they had not tested me for Lyme at the time. My tiredness passed, but then proceeded into joint pain, then forgetfulness a couple of months later. If I were you, I would consider a second opinion, just to make sure. An Infectious Disease specialist, if there is one near you, is who would be the best one to see. Make sure to ask if he specializes in Lyme Treatment.

I hope you feel better soon.
 

jaie

So happy!
That is the same thing they told me, but they had not tested me for Lyme at the time. My tiredness passed, but then proceeded into joint pain, then forgetfulness a couple of months later. If I were you, I would consider a second opinion, just to make sure. An Infectious Disease specialist, if there is one near you, is who would be the best one to see. Make sure to ask if he specializes in Lyme Treatment.

I hope you feel better soon.

:bawl:
 
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