Hello everyone, Krista's Lyme story will be on WBT, Pete Kalinar show tonight at 9:00 pm. It will be streamed online. Please listen and call in. The more that call the better our message will be...
Oops! I've got you info from her sorry...
I talked with Gracie's Mom and she said I need to talk to you. Can you please e-mail me so we can talk....
Hi Lovelabs and Traveler, Thank you for the information and good thoughts. Lord knows the child has had enough in her life already, she does not need any new complications....
Has anyone had Botox injections? I need the good with the bad. The ortho docs want to put several in Firefly 16's right leg to see if they can get it to move again. There are no other options at this...
Rotten Dog, Thank you for the link. Are you in South Carolina? That is where we are. I would really like to talk to you if you are. You can e-mail me and let me know....
Thank you for the reply Razzel, Firefly 16 also has Chiari 1 malformation with a syrinx as well as Lyme. When she was on MTX she had fewer problems with walking and thinking, it does lower...
Hi everyone, In going over Firefly 16's history I started thinking about the breif time when she was "well". Gracie's Mom got me in this train of thought. (thanks) Any way I have read that many of...
Hi nefferdun, firefly took plaquenil for one year along with methatrexate, The onlly time in 11 years now that she could function. Plaquenil was first developed for Milaria. It has been around for a...
Naturebabe, Has anyone ask you about Chiari 1 malformation? This can cause the migrains and base of neck pain. It will show up on Brain MRI. Do you have any other nerve type symptoms? Hope things get...
Firefly was 8, April 1999, when last tick was removed. Camping trip in upstate South Carolina. Four ticks removed around ages 4 and 5. In our yard in upstate SC. Symptoms started May 1999....
Hi to everyone, /community/emoticons/smile.gif I have not been on in a while. Firefly 16 has a new dx, she has a Chiari one malformation. So our big question now is, is this masking symptoms of lyme...
IH8Ticks, You need to find out how well your stomach is working. My daughter has gastro-paresis, her stomach does not contract any more. This is a result of long un-dx of lyme. The test that checkes...
We have family in Maryland and they need to see LLMD's one for older aunt and one for children who have had ticks on the this summer. I could use any help you guys can give. Older aunt was treated...
Dear sunshinedaydream, You need to be tested and use Ingxe lab in California. There is a web site for them www.ingxelab.com, on this site you can find out how to send a blood sample in. I recommend...
Hi Dowa, She uses both the heparin and coumadin. When she had the picc line it would only stay open for 9 days at a time ( that was using heparin). So when she got the port he decided to add the...
Dear Dowa, I use heparin to flush my daughters port after each IV. We also flush with saline. She also takes Coumadin once a day to help with the clotting problem that the lymies have. We used...
Dear bablymers, Thanks for the reply. Firefly does not eat food. She is fed through a J-tube because she has gastro paresis . Her stomach quit working about one year ago. This has happened once...
Is that oral? How often do you take it? How complex are your symptoms? Lots of questions I know. Trying to help my daughter feel better and trying to learn as much new info as possible to help her...
My daughter has purple circles under her eyes. At times they are very light. When she feels bad they get worse. In June they were very dark. In the last two days they have been getting darker. She...