posted
Dr J's office called today to inform me that my daughter did infact inherit my dreaded HLA DR4 gene...her lupus test is positive and I am crueshed. My perfect world is crumbling around me....God help us all. Posts: 747 | From Utah | Registered: Apr 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Oh, Kimmie, I'm so sorry. God will help us all.
((((((((( )))))))))
-------------------- "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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posted
Thank you 17hens. I spoke with Dr J's office and although the news is devastating to me, it reassures me that we are in the right hands. Every single doctor slammed the door on us and turned us away...and as sick as I am with this PICC line and all, my child is sicker than me! no one would listen, but Dr J. He will save my child!
If I could take it all away I would. I can not even look at my daughter right now without crying.
Posts: 747 | From Utah | Registered: Apr 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
kimmie,
I am so sorry for this news about your daughter.
You are in the best hands, as you know...Dr J's and God's!
I will pray that your daughter, as well as you, find the right treatments to show great improvement.
May you feel His peace and love, and may your burdens be lifted.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Kimmie, can you tell us exactly what this test result means?
Does it mean she has lupus? Anything else?
Thanks.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF HLA DR 2 and HLA DR 4 are genetic markers associated with an increased risk of lyme induced autoimmune reactions. According to Dr J, the autoimmune reaction will continue until the Bb is eradicated.
Her test results are elevated ANA in speckled pattern with positive Lupus anticoagulant reflex. Dont know what that means, they just said her lupus test came back +. Lyme induced lupus basically. According to him, she will need more of an aggressive protocal because her ( and I) immune system will not attack Bb, but attack herself instead.
Thanks for eveyones support, I feel the hugs right now! You guys seriously keep me going!
Posts: 747 | From Utah | Registered: Apr 2010
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posted
I never was tested for the HLA stuff.. but did have a positive ANA.. it turned to negative after Lyme treatment. Let's pray the same happens for your daughter!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Kimmie,
You are in good hands and it is treatable. When you look at your daughter, you think of that for me...okay.
I'm awaiting results too.
We're gonna get through this.
Big Hugs Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
I think this is just one of the infection-driven autoimmune reactions that lyme people can have. So, don't feel like you were singled out for special punishment. And it is wonderful that you have a doctor who recognizes what needs to be done.
Posts: 8430 | From Not available | Registered: Oct 2000
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I'm so glad that you are going to Dr. J. We need to all lift him up in prayer that he lives to be 120 years old like Moses.
I'm sure that your daughter will get well with treatment.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You guys are awesome support! There may also be some new treatments in the pipe if they would get
their heads out of their political squashing you know whats and let them use it.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Thanks Kim...my hope too. She goes to a rheumatologist in OCt...I'll let everyone know what happens.
Posts: 747 | From Utah | Registered: Apr 2010
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