hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
It was no surprise my dd and I finally tested positive, but to get positive tests the first time for my husband and 2 other children is a real shock.
Now our LL family physician will start treating the other 3. I'm surprised I have a hair left in my head...it's been quite a journey. My husband and 3 year old have had symptoms since July, but my 10 and 15 years olds developed symptoms in September.
We have three more children to test.
We submitted blood to the Bowen Lab for Western Blots and the IFA flow cytometry. Bowen is approved to do Western blots now, but I don't think they report the significant 31 or 34 bands.
Bowen is discontinuing the QRIBb test by microscope; they realize the flow cytometry test is more accurate.
My oldest dd starts homebound education next week.
I'm glad to have test results to support my children's symptoms and history.
Relieved, Nancy
[ 17. December 2006, 07:45 AM: Message edited by: hshbmom ]
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
bettyg
Unregistered
posted
nancy, i can't say congrats, but at least you know what you are dealing with ... THE WHOLE FAMILY; yuk! misery loves company; but this is ridiculous.
thoughts and prayers headed your way!
IP: Logged |
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
You sure have your hands full!
It sounds overwhelming. But thank goodness you are all diagnosed and going to get the treatment.
I am grateful that my kids got diagnosed while they are home with us, rather than off at college or something.
It has been a strain physically and emotionally with a gang of sick people. We laugh a lot which has helped and have somehow had quite a bit of fun.
I hope the homebound goes well for your son. It was a big help for my kids last yr. My daughter is going back to highschool for a class or two in February.
I will be praying for you.
Hope you find a lot of support here and in your area.
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
You sure have your hands full!
It sounds overwhelming. But thank goodness you are all diagnosed and going to get the treatment.
I am grateful that my kids got diagnosed while they are home with us, rather than off at college or something.
It has been a strain physically and emotionally with a gang of sick people. We laugh a lot which has helped and have somehow had quite a bit of fun.
I hope the homebound goes well for your son. It was a big help for my kids last yr. My daughter is going back to highschool for a class or two in February.
I will be praying for you.
Hope you find a lot of support here and in your area.
positive with neuro-lyme, very old infection. recently tested kids. all 5 positive. lots of work for a healthy mom, which I'm not (yet)
sending love
Posts: 169 | From former Philadelphian | Registered: Jun 2006
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I found out that all five of our Western blot tests and the flow cytometry tests were positive.
The validation study by Bowen is nearly complete. They should have state approval by the first of the year, then they'll be able to do flow cytometry tests.
We're going to test our other 3 children ASAP.
The 3 yo was having neck pain first thing this morning....then a few hours later had pain in her calf. I wish I could put her on antibiotics right now! ...before this stuff spreads elsewhere.
I made appointments for everyone in March with a LLMD in Pennsylvania. It's crazy to have to wait that long for an appointment!
Betty, Char and am36, I appreciate your prayers. I'm sorry you've had to go through this too.
Betty, you're right; I'm glad I know what we're dealing with.
Now to try to get our physicians here to realize it's what we're dealing with.....
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
posted
thoughts and prayers to you.
Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
bettyg
Unregistered
posted
Nancy, can you get your primary md to prescribe antibiotics for each of you now LONGER than 1 month? it's worth asking about NOW.
my heart goes out to you and am mom! both of you with 5 lyme kids plus yourselves, and the FINANCIAL drain!
I hope your family members are giving you CASH this year vs. worthless gifts that are not needed in many situations.
perhaps your communities can arrange fund-raisers for each of you: chili, auctions, etc.
that's what my hometown would do and does every year when a family runs into a situation such as yours! they LIVE THE GOLDEN RULE!
best wishes to both of your families.
IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Once I get the WB results on paper I'll take them to our local physician. I don't think he really believes we can have LD here, but he's been willing to treat symptoms and has never had a negative attitude.
I haven't been able to get even 2 weeks of antibiotics out of our LLMD.
I want to contact the newspaper with our story.
I would love for someone to have a fundraiser for us. We've already gone through our savings and are into our retirement account.
Lyme X 9 and iceskater, I appreciate your kind words and prayers.
Lyme X 9, do you have grandparents diagnosed with LD too, or do you have a big family?
Nancy
MERRY CHRISTMAS TO ALL!
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic