posted
She has more and more difficulty being in groups of people.
The stress of pretending she is ok when she wants to curl in a ball and rock from pain and anxiety.
She feels like she is so behind in school (she is, she's managed about 2 weeks since September) that she won't ever get to be an ER nurse. Something she's wanted since she was 5.
She can't even stand being in a room of people these days.
She feels lonely, stupid, anxious and as if no one will ever want to date her or be her friend because of her Lyme issues.
She is on her 4th month of Biaxin and Plaquenil and her cognitive and mental issues have gotten much worse along with her pain levels.
Sometimes when we get home after being out she just gets in a sleeping bag and shakes from the stress.
I just don't know what to do to help her when she is like this.
I try to redirect, encourage and uplift but more often than not I can only hold her while she cries.
Last night we just sat and watched Malcolm in the Middle on netflix with her until she was too tired to sit up anymore. At least it made us laugh a little.
We just found out our 11 year old has it too but she is not in as bad a shape thank God.
It just hurts so badly to not be able to do anything concrete. To not be able to make it go away.
I am so grateful for this group because there isn't anywhere else I can say any of this.
Posts: 21 | From Cape Cod, Ma | Registered: Aug 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
My heart aches for you and her. I can't stand to see our children suffering so much. My DIL put my 12 yr old grandaughter on a gluten free diet when she was having chronic fatigue and it seems to have worked.
She is back in school and functioning well. Was not dx with Lyme. She just couldn't recover from a virus that the whole family had. I am still suspicious of Lyme, but that's another story.
Something to consider. The other thing that I have found out myself, is that parasites play a huge role in Lyme disease and even the LLMDs are not aware of this.
Check out the symptom list at www.humaworm.com. Anxiety is on the list of symptoms. A lot of people on abx treat with herbs as well.
They usually take them an hour or 2 away from the abx. Do a search on here for parasites and also on line. Empower yourself and understand that the docs don't have all the answers.
Dr. K. treats ALL of his pts FIRST for parasites and SECOND for Lyme. Also another site to check out is lymestrategies where they do the salt/c protocol as well as other alternatives and abx.
Salt/c and antiparasitic herbs saved my life after 4yrs of abx didn't work incl 6 mos of IV rocephin.
Hugs and prayers,
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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Does she have a tutor? Will the state provide one so she can stay home from school without getting further behind? What about homeschooling for awhile. I think most states provide you a subsidy to purchase the curiculums you need.
When I go out, I alwayslocke home early. I never let myself feel committed to being anywhere. I always reserve the right to cancel any outing at the last minute simply because I don't feel like going. My husband is completely supportive of this and it lowers my stress level sooooo much just knowing I don't have to go out. Sometimes when I need to get out but don't feel like I can deal with it, we just go for a drive, maybe hit a Starbucks drive thru and then head home.
I'm sure you've tried everything. Holding her while she cries may feel like you're not doing anything but you are. You're letting her know that she never has to be alone in this. I can't imagine anything more important.
I'll be thinking of your family and praying for you all.
Posts: 707 | From Colorado | Registered: Jul 2010
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Have you watched Under our Skin? If I can remember right, Mandy (in the movie) wanted to go back to school for nursing. I think she made it back.
Maybe you can check my facts or someone else chime in.
Watching someone else might let your daughter know it is possible to do what she wants
I can't imagine my kids going thru this. You are a wonderful mother. Hugs, holding are the best.
-------------------- 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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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
So Sorry your daughter is not doing well.
My daughter has Lyme and Co also, it is not easy to watch them suffer. Daughter has horrible anxiety too.
They say it gets better with treatment.
Hugs to you both
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Love. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Yes, I've experienced these feelings/symptoms myself and so has my lyme teen.
I can tell you from our personal experience, treating Bartonella took away 99% if these issues.
I can also say from experience that although nothing my husband could do could help me feel better physically, his support and caring made all the difference in the world. And my support and caring are making all the difference for my lyme teen.
Believe me when I say that what you are doing for your daughter, "I can only hold her while she cries" makes all the difference. Don't stop.
With the proper treatment, she will get better and she will become an ER nurse. Don't let that dream die.
Last year, my lyme teen spent much of the year at home rather than in school. This year, she is tackling chemistry and the rest.
It is a terrible illness and sometimes we feel we'll never reach the end. But we will. There is light. Never give up hope and never let her give up hope either. Carry her when you have to, but never let her give up.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
There's nothing worse than seeing our children hurt. The above posters just about said it all; I just wanted you to know we understand and will keep you and your daughters in our prayers.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
She will get better and she will get her life back.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
I really needed the support today, bless you all. Fortunately we've always home-schooled so that is a huge blessing. She tested negative for co-infections with crappy Quest and Clab tests, I am thankful she tested positive for Lyme with them. Thank you from the bottom of my heart for your love today.
Posts: 21 | From Cape Cod, Ma | Registered: Aug 2011
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Hugs and prayers, God bless you and your little girl. She will get well, hopefully quickly. I hope you will at least try to treat the co infections. I was negative at first too. I then showed up positive for Bart, anaplasma and am being treated for babs.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
I will talk to our Dr. about co-infections, thanks.
We do the gluten-free to the extent we are able.
And my husband and I did watch Under Our Skin in horror the day we got the diagnosis.
Posts: 21 | From Cape Cod, Ma | Registered: Aug 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Miklizro,
There is a thread right below yours by DesperationIN. It is a success story and is very inspiring.
Take care.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
its so hard. my son did three years of orals and is in remission since he's 12. He will be 17 in April. His 9th birthday was in the er hooked up to an ekg saying mommy my heart hearts. took him to er as we were sitting in front of dunkin donuts getting munhkins for his school party. Of course the ekg showed he was ok, until we went to Dr. J. who told us lyme attacks muscle and heart is a muscle. He's 16, great kid, acne on face now and refuse to give him doxy, acne is nothing compared to this, for fear this will come out again. Its not dead, his blood work is horrendous, but he doesn't have symptoms. Why start trouble, it'll find him when its time, it might not find him at all. He takes me by the hand now, I'm treating bart and my dad just died. He's been strong for me when I can't think, which is often, its just a shame that Im the mom and I can't do it. All anyone can do is try. He's ok, she will be too. God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
gluten free is all or nothing.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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