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filinha1

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Everything posted by filinha1

  1. Hi All, I have a friend looking for recommendations for a PANDAS-friendly pediatrician in the Westchester NY area. She has an appt. with Dr. B which is not until October and can't find anyone to give her abx until then. Or, if anyone can recommend a different doc who will likely see her child before October, that information would be welcome. She's willing to travel but has four children, one of whom is an infant, so her preference would be to find someone more local first if possible. Thanks, Heather
  2. I believe that as a NP she specialized in pediatrics and she works part-time at a pediatrician's office, but she treats both kids and adults for Lyme.
  3. Hi, My daughter is being treated by Kayleen and we like her very much. Feel free to pm me if you have specific questions. Heather
  4. Anyone know of a PANS-friendly pediatrician in the Baltimore / Annapolis area?
  5. Wishing your son and your family the very best for this surgery and a speedy recovery.
  6. From this short news clip it certainly sounds like Tyler has PANDAS, poor kid. Regardless of what else other than PANDAS may or may not have been going on with Tyler, I'm not going to keep my daughter's diagnosis any more private than I currently do. I'm not too keen on dd herself finding out about this story for her own sake - she is only 11 and has enough self-doubt and anxiety as it is. We homeschool her, so we don't have the pressure of worrying what other kids might say or that school personnel might put her under a microscope for strange behavior. I do sympathize with those concerns.
  7. Husband's undergrad is systems engineering - are we going to get your thoughts on the results?
  8. Great suggestion. Paying it forward in time, money or both for more research is often the only control we have when it comes to this illness.
  9. Agreed, lot's of money would be saved, but probably only in the case of the smaller percentage of people who swim upstream. I think insurance companies count on most people choosing the path of least resistance when dealing with any illness whose presentation has a significant psychiatric presentation - psychotropic medication. This is also the least expensive for them as those pathways - psychiatrists and drug company pricing - have been well established. Adding the insurance piece to any complicated disorder is crazy-making. Our insurance will only pay for the first visit with any
  10. Agreed, lot's of money would be saved, but probably only in the case of the smaller percentage of people who swim upstream. I think insurance companies count on most people choosing the path of least resistance when dealing with any illness whose presentation has a significant psychiatric presentation - psychotropic medication. This is also the least expensive for them as those pathways - psychiatrists and drug company pricing - have been well established. Adding the insurance piece to any complicated disorder is crazy-making. Our insurance will only pay for the first visit with any
  11. Kara, I just tried to pm you to say hi, but your box is full. Heather
  12. Interesting. I find it hard to place a lot of blame squarely in the lap of a researcher like Steere; he may be guilty of being incorrect in his conclusions and may not be asking all the right questions in the first place, that much is true. But Steere clearly isn't a dummy and likely isn't an uncaring monster. When there is equally compelling science that contradicts research like Steere's, I blame our insurance companies for adhering to the views of the side that costs them less. After all there are two diametrically opposing viewpoints in the medical establishment - not the mainstream and s
  13. Yes, thanks! Good read and pass-on-worthy for relatives who still don't quite get it, i.e. "If it's 'real' then why is there still a controversy?"
  14. Anyone use low-dose unbuffered aspirin as an anti-inflammatory on a regular basis, or know of a reason not to? I keep reading about using ibuprofen during an exacerbation, but what are the thoughts on aspirin? Tx, Heather
  15. I thought about this topic you're introducing after watching an excellent documentary called How To Survive a Plague (review: http://movies.nytimes.com/2012/09/21/movies/how-to-survive-a-plague-aids-documentary-by-david-france.html?_r=0 ), on the activists during the early years of the AIDS epidemic. I went so far as to find the current contact info for a couple of the men who were instrumental in getting the govt. and the pharmaceutical industry to pay attention and make timely changes. I haven't pursued anything after that. With Obama's BRAIN Initiative funded with 100 million for its fi
  16. Unfortunately, I think this is correct...that is the surgery. We know the cardiologist and the surgeon, as DH had mitral valve replacement 2 years ago (I have always suspected all the infections for him, too, but he REFUSES to accept it, even though his Lyme test is the only one in our family that actually came back CDC positive. The rest of us were based on clinical symptoms, and even his clinical picture is quite positive. The decision on my son's valve was made by doing an echo...found that the leak had increased to moderate/severe, and then doing a MET test (stress test) to confirm i
  17. Would it make any sense do you think, to try to get in touch with someone in Brian Fallon's group at Columbia University? I don't know if they might have some good advice regarding Lyme co-infections and best practices prior to surgery, but here is the link with contact info: http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=baf1&DepAffil=Psychiatry I'm sending hope and good thoughts your way. H.
  18. We opted not to try doxy because my dd is the whitest child on the east coast and we're heading into summer - LLMD was worried about sunburn. She is currently on azith and augmentin as well.
  19. Hi norcalmom, My dd's myco levels are very high. She is being switched from minocycline to rifampin, because of mood swings and increased anger. I know she may be herxing a bit, but that was our LLMD's call. What herbals do you recommend in addition to the abx? Heather
  20. My dd didn't react too well to minocycline for mycoplasma - increased agitation, anxiety - so we are about to make the switch to rifampin ourselves. I'll be interested in how your son does. Good luck with it. Heather
  21. This only applies to generics, so if you have a generic of the drug you have to carefully scrutinize the label and the manufacturer info should be on it. If you still can't find it, ask your pharmacy where on their labels they print that info.
  22. Smarty, I just sent you a message. Heather
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