My niece got into the hard to get in childrens hospital in this area.
I am glad and I am hoping that THERE they will find the "autoimmune disease" that gave her this facial palsy and encephalitis!
her apt is this month on the 20th.
any prayers or well thoughts are greatly appreciated.
she has not been back to school yet and has double vision in one eye.
Posted by Lymetoo (Member # 743) on :
No hospital will look for Lyme.
Will pray!
Posted by lpkayak (Member # 5230) on :
This news scares me. Slippery slope. And i know they arent listening to you lisa. So prayers niece will get tx she needs and prayers you will understand you did the best you could do lisa
I see this type of stuff in my future with whole family in denial
All we can do is our best
Posted by jlcd1 (Member # 18138) on :
Prayers for you and your family during this difficult time!
Posted by Lymetoo (Member # 743) on :
How are things going, Lisa?
Posted by LisaK (Member # 41384) on :
welll, I had a short conversation with my sister this eve.
I asked how niece was. she still not good. starting home tutoring.
I suggested she try abx just to see if there are any help with sx.
sister said she ''understands' where I'm coming from but with her disease abx don't help.
I said I didn't know she was dx and asked what disease.
she said it was the dissemintaed encephhilitis.
I was polite, but inother words said that I had same thing and it is a sx NOT a disease itself and that what caused it could still be in her body and abx were worth a shot
and that if my kid was suffering I would do whatever might help.
well, of course she got mad at me then
I took that risk and I am not sorry I did. I will not let someone tell me something that I already know to be wrong. because I lived it myself!
anyway, she went on to say how they took all the tests and they were all neg for bacteria, blah, blah, .....
Mmm hmmm. yup . I had tons of those tests for 17 years and they all said same to me. she got even madder.
o well,
you are all correct.
I can only pray. let it go. and pray. that's it. I told her I am only mentioning any of this out of love for my niece.
I wish someone had talked to me like this and lit a fire under me. maybe I would be not so damaged.
trying to get in my peaceful space with all this.
I am hearing lots more stories from all different people of sick and dying kids, and young adults.... ALS, MS.... there will be so many in the year(s) to come!
lyme explosion!
feeling so sad.
if I could keep my mouth shut I would. I just don't think I was born that way.
I just don't see how a parent wouldn't try every possible thing to better a sick kid!!!!!!!!!
Posted by LisaK (Member # 41384) on :
thanks everyone!!!
___________
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by LisaK: [QB]
I just don't see how a parent wouldn't try every possible thing to better a sick kid!!!!!!!!!
- I know. That's really sad. Maybe you could do some research on this and find info on Pub Med.
Mail it to her without a word. But wait a few days.
Will continue to pray!
Posted by Lymetoo (Member # 743) on :
She is believing the doctors because their lousy tests could not find it.
--
I found that with this search:
"disseminated encephalomyelitis + Lyme disease"
Posted by amyb (Member # 5520) on :
LisaK - I'm so sorry. It's so FRUSTRATING for us when we've been there done that and people look at us like I will pray for your niece and her family.
Ipkayak - LOVE your signature
Posted by LisaK (Member # 41384) on :
lymetoo, yes I did this for myself so I would be equiped to go to them and say- hey! it COULD be lyme.
and I did see that link you sent. thanks! the only thing wrong with this is that in that article the boy had Bb in his spinal fluid.
my niece did not. so .... that means no lyme. to them.
I will search again and maybe send to sister, but I am afraid at this poiont my voice in the mater is mute.
seems like they already made up their minds and will have to live this hell.
terrible thing, and considering my BIL lost his mom to MS. she lived on a farm her whole life. never was lyme tested.
terrible sinfulness of a cover up this all is. one day everyone will know and I hope it's before we all die from it!
Posted by Lymetoo (Member # 743) on :
That's what I figured. They tested her spinal fluid and didn't find it. What she doesn't know is that there's only a 20% chance of finding it.
[ 11-10-2014, 12:25 PM: Message edited by: Lymetoo ]
Posted by randibear (Member # 11290) on :
lisa, I've been down this road many times as you all know. at one point I was told I had ignorant beliefs and since she's a radiologist and I'm only an uneducated at best lay person then I could just shut the heck up.
I got so mad I told them not to come to me when they needed money for medical bills.
eventually everyone iknow except a rare few has given up on trying to educate some people.
best you can do unfortunately is wait for train wreck.
and, yes, my sisters are getting worse.
Posted by LisaK (Member # 41384) on :
her apt was yesterday.
and it was a BUST.
she said place was horrible from nurses to care to dx....
dr said couldn't dx without more evidence. the local hospital never sent MRI or report. so ..... lesson learned, call ahead and ask if it got there. I should have told her that but forgetting is my specialty.
so she has no dx. no help. nothing.
I told her next step is auto immune specialist. figured that would be next best bet after llmd which she refuses.
my sister is scheduling apt with ophthalmologist. ugh.
o well..... I tried. I will just be there for support, but if the time comes and I cannot handle it I wil have to tell her to not talk to me about this. it just hits too close to home for me.
Posted by lpkayak (Member # 5230) on :
There are LL opthals. Mine wasnt but when his doctor friend got lyme he became really interested in me
Was the appt that jyst happened with infectious disease doc?
I hope you feel ok. You have to take care of you first
Posted by randibear (Member # 11290) on :
lisa I'm so sorry. I don't know how many times this happens to people. sadly at some point we have to back off.
there just aren't enough doctors who believe in lyme.
and since I'm on medicare it's worse than ever.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lpkayak:
Was the appt that jyst happened with infectious disease doc?
- Was wondering too.
Posted by LisaK (Member # 41384) on :
no, it was with pediatric neurologist. dr dx her with PALSY. did I say that already? palsy. like that is a dx. stupid....
poor thing. letting it go now.
***********
Posted by Lymetoo (Member # 743) on :
Auto-immune doctors will just give her more steroids... unless by chance they think to rule out Lyme.
Very sorry to hear all of this. There is still hope, though! Keep praying!
Posted by GretaM (Member # 40917) on :
Sorry Lisa! I just saw this now.
I feel sick with worry about your neice.
As we know, the longer lyme is in the brain, the more damage done and the harder to shake.
Palsy shoulda been the first clue to that dumb perdiatrician that something was attacking the nerves in her face.
Very surprised they haven't "tried" abx as a last ditch effort.
And I am even more sorry your sis is not going to the moon and back to find out what is causing your neices symptoms and to find any possible treatment.
I am praying praying praying and will hold your neice in my thoughts.
I don't think I am spelling neice right but I am stuck with that word for now.
Also I am sending a cyberhug to you and praying you don't have a flare from this stress.
Posted by LisaK (Member # 41384) on :
Thank you Greta!
I am really trying to disconnect form all this. trying to blank my brain to it- other than supporting my sis with listening, but if it gets too bad i may have to tell her I cannot even hear any more.
I am preoccupied with my biopsy this week so that is a nice distraction from my neice for now.
all I can do is pray.
God gave me tremendous empathy. sometimes I wish I had very little.
Posted by linky123 (Member # 19974) on :
Would she watch Under Our Skin?
Posted by LisaK (Member # 41384) on :
I always forget about that movie! I still have yet to make my family watch it.
I thnk I'll do that soon
not sure sister would watch, probably, but now I think her relationshp with me is tainted in a way of this topic. like she probably has labelled me crazy lymie now.
I am upset more now too since I saw pics of her kidss all playing in leaves in the park, all over thier bodies were the lieaves, and now her dog is dying of unknown cause, and my sister herself is very ill with ....
you guessed it,
flew like sx of unknown origin.
Posted by lpkayak (Member # 5230) on :
I kniw how hard it is with family first hand but i just yelled "how stupid" when reading about the leaves and dog
I know you are trying to distance yourself from them and i hope you can. The worry is not good for you
I like cure unknown better than under our skin for educating loved ones.
But there really is nothing you can do if they arent ready
Posted by LisaK (Member # 41384) on :
yes, arent' ready......
cure unknown. I don't think I saw that!
is there a link for free?
btw, the dog just died. aw poor Moxy.
Posted by Keebler (Member # 12673) on :
Pamela Weintraub - links -
Posted by LisaK (Member # 41384) on :
no one I know is going to read a book. people just dont care that much to get that involved. not in my life anyway.
and now that you say book, I did read this, or attemp to when early dx. I need to get it out again and really read it now
Posted by lpkayak (Member # 5230) on :
Cure unknown is very easy to read...morr like a novel. Unfortuneatlty its true. One families struggle. But not just any family
Posted by Lymetoo (Member # 743) on :
Lisa... I do hope they will try to find out WHY the dog died???
So sad!!!
Posted by randibear (Member # 11290) on :
it's sad really. I see this so much. and I've often thought "I could have told you so."
I begged, pleaded, did everything I could to get ann to listen to me. even tried her husband.
no luck. she died last july. her husband found a new woman by december.
I'm still angry over the whole thing. but hey I tried...
Posted by LisaK (Member # 41384) on :
randibear thats aweful!!!
lymetoo they will not find out what killed dog. my mom even offered to pay for tests or abx and sister declined. she hasn't talked to anyone yet since plus she is now sick withmystery illness so. grrrrr
she is one of the most stubborn people I know.
she said she knew dog would die fast and it did.
I am pouring my energy into my best friend now who is caring for her dying mother in her home. if anyone brings up my niece again I am just going to say lyme lyme lyme. if it is not lyme I will be the first to say I am glad I was wrong!
Posted by Catgirl (Member # 31149) on :
OMG, the leaves! If only they knew.
It's so sad when they don't listen. I gave my family copies of Cure Unknown (doubt any of them have read it). I also loaned them Under Our Skin and they watched it but they couldn't connect the dots mostly because it wasn't happening to them in the exact same manner.
That said, I think it's good you tried. Your intentions were good and true. There is nothing you can do for them but provide the info. Hopefully they will open their minds and consider the possibility at some point.
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