tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I am going out of my mind and guess I just need to vent. As some of you know, after five years undiagnosed, I found out it was lyme. I've been on treatment a little over 8 months now (currently mepron, zith and art).
I was just barely starting to think I was making headway when I find my daughter Had symptoms that the PCP wasn't putting together but rang a bell as very early things I went through long before I felt sick enough to see a doctor.
In any case, she just tested positive for lyme and babesia suspected. I know so many of you have children with this horrid disease and want to know how you cope.
It was one thing for me to go through this H***, but when it's your child that you see going down this same path, with the exception that she didn't have it hitting her neurologically YET.
Basically she had mono, and kept getting more and more sore throats that they would just give her abx for but the red flag for me came up when her thyroid test said it was under active and she's skinny as a rail.
I recall my thyroid bouncing around in regular physicals LONG before my symptoms started that I complained of, so I worried I may just be a paranoid mother. But no, she tested positive and I'm not sure how to cope.
I struggle getting around on my own and still haven't mastered the stairs in my house by myself and this is just leaving me with high anxiety out the roof. Yes, I've had it with lyme all along but this kicked it in OVERDRIVE.
Sooooooo....I try to tell myself that if her symptoms that she would be aware of are just sore throats and fatigue since she doesn't feel anything from her thyroid....I keep convincing myself that the herxing will be much more minor than what I have lived.
How do we protect our children and how do I stop crying. I wasn't even crying for myself. Sort of like mess with me...ok, but don't touch my kids. HELP!!!!!!!!!!!!!!!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Having 4 kids of my own, I kinda know how you feel. My husband has lyme, two of my kids have gotten bitten and my dog had lyme, he died. Sometimes the words to make you feel better are hard to find. Just know that your family is in our prayers, and there are people here that care.
Posts: 5 | From Royersford, PA | Registered: Jun 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
We do our best. We love our children fiercely.
We get them the best medical help we can afford.
We pray...... a lot.
My children may have gotten Lyme from me.
Once I acknowledged that I realized that my having Lyme is a mixed blessing.
It enabled me to research and recognize signs and symptoms in my children.
As my children are 5 and 4, herxing for them is mostly behavioral.
Mostly in my five year old. Lyme rage in a child is a hard thing to watch and acknowledge.
I have to not let her Lyme rage set off mine.
Sounds strange but true.
Your a great mom. Your child could have gone undiagnosed and untreated.
What a wonderful advocator you can be for your child.
Hang in there.
Take a deep breath.
Now try to direct that energy on getting you and your child well.
I am sending you positive thoughts and prayers for you both.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
If you read my other post on this bosrd you will see that I am worried like you. My pedi will nit even test my kids. So I dont even know if they are sick. I dnt want them to go through any of this BS. The pain and suffering is too much and I couldn't tolerate seeing them go through this.
I can barely tolerate this my self and at times I am on the edge. I will pray for all of us tonight. Best of Luck, Melissa
Posts: 3905 | From USA | Registered: May 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Thank you all for your kind and thought provolking thoughts. Oddly, as soon as I got the news, I came straight to Lymenet so I would have someone to talk to that I felt would understand.
You came through for me. I know I look like I'm an over reacting mother or bordering on hysterical and then to boot, my husband got his lyme results this evening and he too tested positive. I too have four children.
One was actually bit by a tick this season while playing golf but found it the next day and had the ER remove it since it was so deep by the time he found it but they couldn't get a good testing on it. They gave him 21 days of Amoxy and told him to come in for testing 6 weeks later, but I imagine that will be Elisa...but we will see.
As far as getting family members tested, I didn't go through our PCP/GP and never mentioned a thing. Went straight to a doctor willing to run the Igenex test. He's not a lyme dr. per se as mine is, but mine is in another state with a long wait and all I wanted was the test at this point.
I'm sure things will work out. I just wonder how those of you with multiple family members with this disease can actually afford it. We aren't Lower income so we would never qualify for help, but just my illness alone has brought us back to the paycheck to paycheck and digging into savings. Ugh.
Thank you for letting me vent. I usually get hysterical the first day and calm down after a good nights sleep. I just needed someone to listen, so than you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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