posted
I am new to the form and I have been reading these posts pretty much non stop for past two days. My son's test results said negative but I have learned that they are actually positive. He is ten. The more I read the more terrified I become. I don't understand why some people get well and others don't. Is it the length of time a person has the illness, the type of symptoms, the co-infections, the person's age?? What makes the difference? When I first found out about this I wasn't happy but I was ready for battle. At this point I am on the verge of tears constantly and I keep thinking about my son not being able to move in the AM or suffering a heart attack. (He has had no fatigue or muscle pains except once shortly after he was bitten). His symptoms are mostly neuro. Also, I didn't realize how horrible the treatment process may be. I don't know how I am going to stand seeing him go through this. I think he has been infected for 7 years so how far into his body/brain has it gotten? I am on the verge of a meltdown. No. Having a meltdown
Posts: 55 | From Kingwood, TX | Registered: May 2011
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I'm sure that you are feeling overwhelmed and frightened but you will see a light at the end of the tunnel. YOu have already taken the first step, that is recognizing that it is going to be a long journey. Some people get well quicker than others.
There are many variables that determine how long someone must fight the battle, many of which you have mentioned.
You need to find a good LLMD first. I'm sure you have been to seeking doctors.
Hang in there.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Hang in there. Children respond much better than us old adults!! You and your son may get lucky and he won't do anything but get better with treatment.
Some don't even herx. Lucky ducks.
I understand your fear... but we never know who gets well quickly and who doesn't.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Everything seems bigger and scarier when it is our kids. Take deep breaths and remember kids are resilient, stuff bounces off them, unlike us.
Please find a good LLMD and find out all you can about what he has and treatment options. It helps so much. Knowledge is power...otherwise our brains go wackadoo thinking about things that may never happen.
I will be praying for you and your son.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
Im in the same boat as you, I am scared. Its not just me but my wife too. But i have been researching for about a week, and I think(which i am dealing with and you ) is overload, meltdown its driving me insane. but realize we are new and i hope that alot of people who are cured. dont post as much. I hope this doesnt sound wrong.
I have not been diagnosed yet but this has been considerable help.
The not knowing for me is killing me
-------------------- Help I am being forced against my will to learn medicine!!! Posts: 164 | From WASHINGTON | Registered: Jun 2011
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quote:Originally posted by My2B: I am new to the form and I have been reading these posts pretty much non stop for past two days. My son's test results said negative but I have learned that they are actually positive. He is ten.
The more I read the more terrified I become. I don't understand why some people get well and others don't.
Is it the length of time a person has the illness, the type of symptoms, the co-infections, the person's age?? What makes the difference?
When I first found out about this I wasn't happy but I was ready for battle. At this point I am on the verge of tears constantly and I keep thinking about my son not being able to move in the AM or suffering a heart attack.
(He has had no fatigue or muscle pains except once shortly after he was bitten). His symptoms are mostly neuro.
Also, I didn't realize how horrible the treatment process may be. I don't know how I am going to stand seeing him go through this.
I think he has been infected for 7 years so how far into his body/brain has it gotten? I am on the verge of a meltdown. No. Having a meltdown
Breaking this up for easier reading for many.
Not fun, but at least you're here and learning - I suggest you go look at a site, www.drjoneskids.org, about Dr Jones, who has treated over 10,000 kids. Most kids do get better, is my understanding.
I think the issue of adequate protection, including tick repellent, is real important, so that kids/adults don't keep getting reinfected.
Hang in here and you will figure out the best path to pursue, with everyone's help -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Yes, the research overload is definitely draining and yes the wait is torture. I hope you find out soon. It is like you are waiting to have the next several year(s) of your life determined for you. I wish you the best of luck. Did you get bitten or do you think you got it from your wife?
I am fearful that my youngest son has contracted Lyme as well.
He has complained a lot about his legs hurting. Strangely, the day I read about neck pain being a symptom, he began to have neck pain that has lasted into today (tonight). Also, he has terrible night sweats and nightmares. (He just woke up a few minutes ago drenched in sweat screaming about snakes). I am really confused here.
I have never seen a tick around our home. Can it be transferred from person person through casual contact? This is getting scarier by the minute.
Posts: 55 | From Kingwood, TX | Registered: May 2011
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posted
Hi - I call it going to Lyme school, just to learn about all this - give yourself a little time here to absorb what's going on -
Night sweats can be a sign of another co-infection called babesia.
Ticks are really hard to see, and so easily missed. Yes, the bacteria is in fluids and tissues. Some couples pass it and some don't. Best not to share dishes re the saliva possibility.
Posts: 13116 | From San Francisco | Registered: May 2006
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
The learning curve with Lyme and co-infections can be daunting.
You have already won half the battle, though, because you are here on Lymenet reading.
There are many scary stories here...that is true, but most people on here are sick, or really sick...just a few of the well ones stick around to help the rest out...understandably.
Lyme disease is better understood and plans of attack are more available then it was a decade ago...and you won't be forced to go into the bowels of the internet to find out smidgens of information...so this is a good thing.
My daughter, at age 13, got ill from Lyme. It was a roller coaster ride for many reasons and one of those reasons was co-infections were not as understood as they are today...and LLMDs, in my opinion were even scarcer then they are today.
The fear can gripe you like nothing else when your beloved child is sick...I know, I know. And telling you NOT to be afraid is probably useless...but just know this...your son can and will get better...he's young, he has a mother who is on top of it and that will be more than enough to get your son well.
My daughter is so so much better now...I will not lie to you, you deserve the truth, it was no walk in the park...because we are moms and we take things hard concerning our children...but we made it.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Treating Parasites is a VERY important aspect in getting well. It is often overlooked by many docs unless following Dr. K.
In a recent conference he said, get rid of Parasites FIRST and Lyme Second. Do a search on here by typing parasites into search bar at the top.
PLEASE don't ignore this,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thank you so much for the messages. I feel so much better although some of them made me cry (A little emotional).
My son was treated for both candidas and parasites a year ago. He was tested a few months ago and it showed negative. However, these were intestinal parasites. Is this what we are talking about? I will do the search and see what I can learn.
Thank you all for your kind words and support.
Posts: 55 | From Kingwood, TX | Registered: May 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I have been here a long time and actually will not be around for awhile but when i tell ppl about my kids it seems to help them. i had 4-they are all adults now and doing well. all with good spouces (last will marry in oct)
all dx and tx at least once for lyme
3 of the 4 got advanced degrees...2 almost doctorates
so ... it isn't easy but i encourage you to learn what you can-get a good llmd or consult with dr J and do what ever you have to do to get as much tx as you can
i know ppl who have gone into debt and mortgaed houses and not regretted
please take care of yourself and stay here for help and support
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
My son was diagnosed at 9, antibiotics till 12' he's a healthy 16 year old now. It sux. It's scary, things will be ok.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Me and my kids are fine today. We went through VERY rough times- my 4 year old was on abx and mepron for 2 years, I did orals and IV BUT before life was unbearable and today it is wonderful. I agree with other posters you are halfway there because you are reading and researching. Treatment was hard but not knowing what caused my 3 year old's symptoms was worse. We have said goodbye to abdominal pain after every meal, severe constipation, burning urination, migrating joint pain, hyperethesia-skin sensitivity, light sensitivity, rapid mood cycling, separation anxiety, night terrors, stabbing eye pain, headaches, neck pain, sound sensitivity, incontinence, suicidal thoughts and on and on.
What pushed me over the edge was my three year old saying "mommy I wish I was dead"
Today she is a happy, healthy 8 year old.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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