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jpjd59

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Everything posted by jpjd59

  1. jcad9: Sounds very familiar. My 26 year old daughter was diagnosed with POTS before she was diagnosed with Lyme disease. I'm so sorry that you too are suffering from Lyme. It's great that you are seeing a Lyme specialist. Progress can be slow but at least you are seeing some improvement.
  2. Great news! So glad Tyler is doing better.
  3. Janet: We battled insurance company for months trying to get IVIG approved for my daughter. They finally approved 10 doses. She has completed 8 so far and we notice no improvement from it.
  4. Rachel: So sorry to hear about Tyler not feeling well (and your hubby). I hope you can escape catching what they have!
  5. Rachel: I'm glad you and Tyler saw some improvement (even if it is small changes). Keeping my fingers crossed that Tyler will continue to improve!!!!
  6. Can anyone tell me if (and how) they have had IVIG approved through their insurance company. My daughter has POTS and has recently tested positive for Lyme. A few years ago her neuro tried to get IVIG approved and it was denied. Any suggestions would be appreciated. Thanks!
  7. Rachel: I'm keeping my fingers crossed!!! Pam
  8. Rachel: We had this test done for our daughter a few years ago (we were desperate for answers!) We didn't find out anything significant from the test. I probably wouldn't do it again - pricey and not any valuable information (at least in our case).
  9. Best wishes to Tyler! Hang in there - I know it's hard for you as a parent to watch your child have to go through all of this.
  10. Clb75: I don't remember how long it took for it to get out of her system (it's been several years since that happened).
  11. So sorry this happened to you! The same thing happened to my daughter. One small dose of Lexapro caused us to have to call an ambulance because she collapsed and we spent the next 12 hours in the ER. She tried another kind of SSRI and it caused the same reaction.
  12. Katybug: How long ago were you diagnosed with Lyme? Are you feeling any better? (I ask because my daughter who was diagnosed with POTS in November 2011 was diagnosed with Lyme about 6 months ago).
  13. This is so common. When the doctors have no answers it seems they use this term so that at least they can give a diagnosis (instead of saying "I don't know"). I can tell you that I have had a lot more respect for the doctors that have told us "I don't know" instead of trying to label the problems as anxiety.
  14. June: What did her heart rate do during the TTT? (My daughter's blood pressure is never affected by her standing up - but her heart rate soars). Pam
  15. Rachel: Wow! Tell Tyler to hang in there. You must also be exhausted. I know how stressful it is seeing your child go through such an illness. Continue to stay strong!!! Pam
  16. Have you been tested for Lyme and/or Babesia? My daughter has major sleep issues and breathing problems and the doctor said that this is the cause of her problems. Just a thought . . .
  17. PictureofHealth: My daughter, who also has Lyme, has had a zillion symptoms, including vision and blood pressure issues. Like yours, eventually the symptoms go away - at least for awhile. Everyday is a new adventure of symptoms and trying to manage them. Keep fighting!
  18. Rachel: I'm so happy that you finally have some answers. Hopefully Tyler will be feeling better soon! Pam
  19. Blue: So sorry for the rough time you are going through. I always thought that because we had health insurance we would always be fine, but now that our daughter was diagnosed with POTS (and Lyme, Babesia, etc.) we are also finding that most of the expenses we are incurring are not covered by insurance and we are paying out of pocket. What a lesson we have learned!!! Hope you get to enjoy a walk in the park soon to lift your spirits
  20. June: So sorry you are going through this. I am also the parent of a severely ill daughter and the doctors have seen the "mama bear" come out many times. I know it sometimes feels like you are continually fighting the medical system, but keep up the fight. Your daughter is lucky to have you on her side fighting for her! Pam
  21. Wonderful news! I hope you continue to improve each day.
  22. Rachel: My daughter had been tested for Lyme twice, both results being negative. We recently had her tested again through a different lab and her results came back positive for Lyme (negative for co-infections). Pam
  23. Alex: Sorry to hear you have had a rough few days. Hope things improve soon!!! Pam
  24. Rachel: I know California is quite far from where you live but there is a neurologist at Stanford (Dr. Safwan Jaradeh) who specializes in POTS. If Tyler's results come back showing nothing, you might want to call his office and talk to his nurse practitioner, Cynthia, to see if that is something that they could help with and if they would be willing to work with Tyler's doctor(s) back home. Pam
  25. Alex: Good luck tomorrow!
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