LymeNet Flash: Lisa's Update if anyone remembers her story

This is topic Lisa's Update if anyone remembers her story in forum General Support at LymeNet Flash.

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Posted by smiley1954 (Member # 7031) on :

Lisa's story was put on her a very long time ago from our good friend tincup. I haven't been on for a long time but thought I would give lymies support and hope. Lisa was very very ill like the majority of everyone on here. She in on her 3rd PICC line and each time improves. Last summer after she was treated her brain scan was repeated and it showed a tremendous improvement in blood flow to brain. She started feeling a little ill again and asked her doctor if she could be treated again. Well after long discussions she got her treatment again which she is in process right now. This kid went from a kid that didn't smile, speak, look up, care about anything, only laid in bed with all the symptoms we are all aware about to a bright happy smiling, going to school (althought still a private one through the county here in MD), working a job as a cashier to think this was a kid that never looked up or spoke to even family members!!!!!! ask tincup. where are you girl. She had been in children's in dc and our favorite hospital NOT Johns Hopkins who said this kid needed electric shock treatment and was the worse depressed child they had ever seen and that she did not have lyme nor was I to talk about lyme or take her to a lyme doctor. Since pulling her out of that ______ hole no body would recognize this kid. I have found tooth and nail from 1996 to get her where she is today. She is off almost all of her depression medications. She was on high doses of antipsychotic meds for hallucinations etc. She is completely OFF all that crap. I just want to give hope to everyone out there. Never give up. Just fight and I know it is hard for those who are too ill, but find someone to do it for you. I had to fight all alone, my family didn't want to believe that JHH wasn't right. But now they are all glad that I stuck to my guns. I couldn't have done it without the support on here and especially our loved one, TINCUP!!!!!!!!!!!!

Posted by Lymetoo (Member # 743) on :

Hey there, Pam!!!!!!....editing this so we can all read it more easily..........

Lisa's story was put on her a very long time ago from our good friend tincup. I haven't been on for a long time but thought I would give lymies support and hope.

Lisa was very very ill like the majority of everyone on here. She in on her 3rd PICC line and each time improves.

Last summer after she was treated her brain scan was repeated and it showed a tremendous improvement in blood flow to brain. She started feeling a little ill again and asked her doctor if she could be treated again.

Well after long discussions she got her treatment again which she is in process right now. This kid went from a kid that didn't smile, speak, look up, care about anything, only laid in bed with all the symptoms we are all aware about to a bright happy smiling, going to school (althought still a private one through the county here in MD), working a job as a cashier to think this was a kid that never looked up or spoke to even family members!!!!!! ask tincup.

where are you girl. She had been in children's in dc and our favorite hospital NOT Johns Hopkins who said this kid needed electric shock treatment and was the worse depressed child they had ever seen and that she did not have lyme nor was I to talk about lyme or take her to a lyme doctor.

Since pulling her out of that ______ hole no body would recognize this kid. I have found tooth and nail from 1996 to get her where she is today.

She is off almost all of her depression medications. She was on high doses of antipsychotic meds for hallucinations etc. She is completely OFF all that crap.

I just want to give hope to everyone out there. Never give up. Just fight and I know it is hard for those who are too ill, but find someone to do it for you.

I had to fight all alone, my family didn't want to believe that JHH wasn't right. But now they are all glad that I stuck to my guns.

I couldn't have done it without the support on here and especially our loved one, TINCUP!!!!!!!!!!!!

Posted by Lymetoo (Member # 743) on :

I remember that long, heart-wrenching fight! Does Lisa remember me too? I sure have wondered about you guys!

I'm so glad Lisa is doing well. It's only because her mother was tenacious and refused to give up!

If the search function were working, I would bring up Lisa's Story for others. Maybe Tincup has the link saved on her computer.

TC has been busy with the hearings in Maryland. I imagine you've heard about them!

Again, I'm so glad you and Lisa are doing great. How old is Lisa now? 15 or 16.....?? Birthday coming up soon, right!? Tell her I remember that it was in April!

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Lymetutu

Posted by HEATHERKISS (Member # 6789) on :

Hey smiley,

We are all happy for Lisa and her road to recovery. Thank goodness she has a wonderful mother.

Heather

Posted by cbb (Member # 788) on :

What wonderful news!!!
So glad to hear a success story, but it should not have been so difficult for her to get the right diagnosis and treatment.

Please give us updates from time to time and give Lisa a big hug for us.

Thanks for taking time to let us know how she's doing.

Posted by lou (Member # 81) on :

I think you probably saved your child's life. Wish she was not still needing treatment off and on, but she has done so well. Both of you deserve big heroism medals. Hope you heard some requests for forgiveness from family members.

I do remember your story, being an oldtimer on the board.

Am wondering if you might take the time to write this up and send to the state officials involved in working on the lyme legislation in your state. This is just the kind of thing they need to hear. That longterm treatment does work and that the big name institutions like JH are really goofing on it.

If you are willing, someone can give you the name of the bill sponsors, or the health committee chairman who was in charge of the recent hearing. Also, a copy to your own representatives, so they will co-sponsor, vote for this legislation. This would be a good way for you to pass along the help you got from others here at lymenet.

Glad to hear from you. Best wishes.

Posted by kgg (Member # 5867) on :

Thank you for sharing this update. It gives us hope!!!

Karen

Posted by lymesux (Member # 6248) on :

Smiley,

Thanks for the great news about Lisa and the hope, we all need it no matter what.

You helped me alot too - I was aaronkatie then in case you don't recognize the name.

Thank you

Posted by Lymetoo (Member # 743) on :

I found it!! Eureka!!!

Lisa's Story:
http://flash.lymenet.org/ubb/Forum1/HTML/002915.html

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Lymetutu

Posted by smiley (Member # 6708) on :

Glad you all remembered Lisa. Lisa will be 17 at the end of April. She works 3 nights a week as a cashier (which is so unbelievable) and tons of friends and is doing great in school. Don't ever give up! I think I am going to send a letter to JHH and tell them how well she is doing. I will tell Lisa you all said hello.

Posted by JillF (Member # 5553) on :

You should definitely send Lisa's story to the newspaper.

If the Bowie Blade printed mine, I cannot imagine Lisa wouldn't get her story printed.

I did not live that far from Burtonsville.
It saddens me to think of others who are so ill with Lyme that live so close to me.

It is my worst nightmare that my toddler will end up with all of this.

Lisa's story will be something I will cling to if/when my son starts to show symptoms.

Posted by NP40 (Member # 6711) on :

I have a 14 year old son with lyme. Though his symptoms aren't as severe, there severe enough. Thanks for the uplift.

Shock treatment huh ? Maybe a few of those "experts", at Hopkins would like to volunteer, to show us the miraculous healing power of having heavy voltage coursing through you.

Maybe, one of those "experts" will get a groin injury, and they can show us the therapeutic power of electro shock.

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by NP40:
Maybe, one of those "experts" will get a groin injury, and they can show us the therapeutic power of electro shock.

Now, THAT'S a novel idea!

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Lymetutu

Posted by daniella (Member # 6753) on :

Smiley,

You sound like a fanatastic mother.... Thank God for your strength and perserverence and belief in your daughter... Would you like to adopt one more? ...just kidding......kind of......

Congratulations..I'm glad things are looking up for Lisa...

she has an amazing story to tell...

take care,
daniella