Topic: teen girl wants to hear from other teens with lyme!
darn, i had a long post here; forgot subject line used back and ALL of it is gone; so here we go again! uffda
We have a 1 yr. member who does NOT post often, isn't computer savy, and asked if I would post the following about her daughter and her caring bridge site so Sami can hear from other teens with lyme disease!
So here are portions of Brenda aka bsigel's pms to me with her blessing to post them and Sami's caring bridge site! ******************
My name is Brenda. Our daughter, Sami has been sick with lyme and co-infections at least since Feb 28, 2006.
We are taking Sami to Dr. J in Ct. He is a wonderful man.
Sami hasn't been to school for 2 yrs.
I am seeing brain function improvement on the IV claforan, but Sami still has severe photophobia to the point where we sit in the dark all the time, if we go out she covers her head with a blanket to ride in the car.
Sami still is experiencing severe joint pain, fatigue, tiredness, etc...
Just wanted to say hi. I check lymenet often, but don't post much. I saw your posts to Mike about Alex. I sure hope someone out there can help Alex. I check her caringbridge space almost daily and email her mom. Take care. Brenda Warfordsburg,PA | Registered: May 2007 ***************
did you get my NEWBIE package? in there do a search by using EDIT, FIND, and type in NOIR
you should get several pages about these wonderful NO INFRARED SUNGLASSES in light and dark amber shades! i could not live without mine since i learned of these 4 years ago.
i've had many replacements; ALL FREE for scratched lenses or in my case, BROKEN BOW on left side!
these would really help her; i'm sure i'm as bad as she is outside but dont use the blanket, etc.
i have the DARKEST PRESCRIPTION LENSES EVER; then wear either 1 of the 2 noir sunglasses OVER my existing frame.
on the sunniest days, the DARKEST NOIR would allow only 4% light in is WAY TO MUCH SUN still for me.
same thing applies to GLARE ^ REFLECTION ... just as bad for me!
so i really sympathize for your daughter's sensitivity!
i'm just as bad for noise/sounds hearing a pin drop; my husband is deaf in 1 ear; and wears hearing aid in other. i'm constantly yelling at him to turn DOWN tv! not good situation..
i wear a floppy hat that comes down on the sides; Mom's former bus traveling hat, and it helps keep more light away from my eyes.
glad to read she is seeing dr. j!! i've thought of him with alexis as well.
God bless you for going to alex story daily, reading, and sending alex mom/dad a note!!
it's just so unfair; a young child who has NOT experienced life as we know it facing DEATH for UNKNOWN reasons! we'll never know why. very busy here but i try to respond as i get pms, etc. Betty G. ////////////// Hi Betty,
I will check out the NOIR. Sami is picky about how she looks, but she really does need to wear something like that so she doesn't have to keep her head covered up.
Sami still has Dr. J, but her case is complicated. Sami has Intracranial pressure and HLA DR4.
We are seeing a little improvement on IV claforan though. I'll just keep praying for Alex and pray that Dr. B can go see the girl before it is too late.
Take care Betty and now that we are introduced, I will be sure to look for you. Do you do the lyme chat? I can't get my computer to let me do it. Brenda ***********
i sit in dark as much as possible too. i forgot to add that also! it's comforting to my eyes. i've recently started using 1 of those little adjustable lights standing 4' high and have it on BEHIND me pointed at the wall to read and it gives enough light that hubby isn't complaining about being in dark. that might be something to try.
NOIR sunglasses have some that are MORE fashionable, so have her look at regular framed ones!
no, i don't do lyme chat. i did 1 chat line before; TOO SMALL TO SEE with my low vision, and women typed so fast, you couldn't read and understand WHO was talking to who. later... *************** Hi Betty,
Thanks for letting me know they have more fashionable Noir glasses. With Sami being 16 now, she doesn't want to look different.
I bought some of those booklights, Sami has been using them to read with. She is trying to catch up on school work. There are just some days she can't do much of anything.
I just got a letter from school with them acting smart to me because I have cancelled on the homebound instructor when Sami wasn't well enough to do anything. Well, from now on, even if she can't get out of bed I am making them come, just so they shut up.
Take care and it is so good talking to you. Brenda *********
you mentioned school problems, go to support and look for the post about SCHOOL 504/IEP or something like that.
you need to read Nancy/aka HSHBND..something like that...it's initials of her 4 kids with lyme plus her and possibly hubby! she's from ALABAMA.
she's written up guidelines for lyme parents on school system, etc.
is sami on any ONLINE TEEN LYME GROUP? THERE are 2 or 3 around; this board started one last year; moderated by a parent. if you have my newbie links; i'm sure there is ONE listed in there that wasn't very active.
nancy above also has daughter around your daughter's age ... would be nice for them to share MUTUAL experiences and COPING mechanisms! take care Brenda...Bettyg *******************
I asked WildCondor if she new of anyone that could help Alex. I haven't heard anything yet. It really sucks Sami being sick like this and missing out on her life, but she can still talk and eat. I feel so bad for Alex and her whole family. They need answers.
Does ILADS have a center or something in Maryland?
If they want to do research, I'm sure everyone on lymenet would give a blood sample, urine sample, hair sample, etc... There has to be something that would kill this bacteria. I wonder if ILADS has a database with every person diagnosed that did not meet CDC criteria, but still have lyme.
Sami has emailed Victoria Wilcox a couple of times. I just got an email from Victoria earlier this evening, she just wanted to let us know she is out of the hospital. I feel so bad for all these kids.
Sami started her own caringbridge page-if you want you can visit and leave a message. Go to www.caringbridge.org and type in samisigel all lower case, no spaces. That is making her feel a little better, just by having people leave her messages.
Thanks for telling me about the school info. Keep in touch. I will pray for you tonight, too. Hugs, Brenda *************
i honestly don't know what ILADS has.
but here we have the NEW LYME RESEARCH CENTER AT COLUMBIA UNIVERSITY, NYC, but they do NOT take kids!! how ridiculous!
i talked about nancy above; she tried to get her oldest daughter in there and was told no; adults only!
brenda, you don't post often, but how about posting sami's caring bridge site in support telling how old she is, etc.; we've got at least 1 dozen active teens on this board. and then when her journal is updated, state a new post is up, and show her website.
also, it would be a reminder to me to check it and say hello while i'm there .... hint hint! they might be able to cheer her up.
glad to hear victoria wilcox is OUT of hospital; sarah hasn't sent me a note advising me of this. **************
Makes no sense to have a research center and not take children. You'd think they'd be worried more about the children and take care of the adults later. This world and this lyme disease are both such as mess.
I will try to post Sami's caring bridge page. I'm not very computer literate. I'm lucky, I can send an email!
That's one thing Sami didn't lose, she can still do stuff on computer when light is not making her have a screaming headache, and I don't even know how to copy and paste something.
The teacher came today and Sami wasn't well enough to work. The sleep problem is happening again, where she can't fall asleep at night.
I showed her the ignorant letter and she even said it was rude. The teacher told me not to worry about it, that we have enough to worry about and that Sami is not that far behind and since she has the IEP, there is not much the school can do about it. That made me feel a little better.
I told Mrs. Solomon that she could come every day even if Sami was too ill, but I didn't see the need for it. Mrs. Solomon said she appreciated me giving her notice because if Sami is unable to work, she has other stuff she can be working on.
Still haven't heard from WildCondor, but I just keep praying that she's working on someone to help Alex. I emailed Mike, Alex's uncle and he said they were looking at a naturopath doctor and he was waiting for a reply. Hope someone helps them soon.
Hope you are feeling OK today. Which doc do you see? How long have you been sick? Take care. Hugs, Brenda ++++++++++++++
what a kind home teacher you have for sami!!
if you want, i could post something about sami's caring bridge site for you based on what you have posted above
show her site name, and then when you or whoever UPDATED JOURNAL news, could then come here and post something that it was updated for people to read and send sami good well wishes!
feeling ok today...
no lyme dr. presently; i have around 8-12 at our local clinic who do this or that for me; NONE TREATING LYME!
did go see NEW infectious dr. 12-31; but he is 100% IDSA so i interviewed him galore. clinic ceo still has not replied to my letter why they hired someone like him vs. a llmd who WOULD TREAT US MORE THAN 30 DAYS to get us into remission.
busy; get 1.5 hrs. here and then to take all our tax stuff to our accountant; got it finished and all together late yesterday. got to get hubby off my back for GETTING IT THERE.
i've got a great hubby 70 yr. old with mild parkinsons but SEVERE HAND TREMORS.
been sick since xmas 1969, age 21`; so 38 yrs. and 34 yrs. MISDIAGNOSED by 40-50 drs. for everything under the sun!
i heard about lyme symptoms going to special fibro/fatigue meeting. sent blood to igenex for W.B. igm/igg just to rule it out.
never in a million yrs. did i imagaine i have LYME ... plus other stuff found! later....
glad you wrote mike too! he needs lots of support for all he's been trying to do on his own! **********
Feel free to post Sami's caring bridge on lymenet.
Maybe some of the teenagers will send messages and she will be able to talk to them and feel a little better about this horrible disease. Sami said she would just like to talk to other people with lyme disease.
The teacher is nice and I am glad about that. Mrs. Solomon said the letter wasn't written by the principal either, it's the witch in charge of special ed. I think she's on a power trip. I'm about to knock her head off!!!
When we go to meetings this woman looks at me like I'm nuts, just because she doesn't have a freakin' clue.
The ticks must not like the ignorant hateful people! Seems like only little children that have never hurt a flea and nice people get this stuff.
You have been suffering for most of your life. God Bless You. Hope you find good health soon. Take care. Brenda ***********************
to you parents out there with lyme teens, please send your comments to brenda on what you've have done with the school and your kids many absenses, etc.
THANKS GANG! I know I can count on you to help Sami, 16, and Mom, Brenda!!
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Hi Brenda & Sami, I just saw your message. PM me if you'd like.