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  1. Actually my daughter was with minimal SE but she also got sick one month after stopping the drug. I have wondered about that
  2. Hi I want to add a thank you Mack's mom as well. The information you provided, MD names, etc have all made a huge difference for my daughter. She got sick 10 yrs ago this month (right after 9/11). I can't believe how far she has come. Louise
  3. Hi Dana Regarding "Chelation is sooo difficult on my body and I think the reactions I get from it are proof enough "; it could also be proof that chelation is bad for you. Just a thought - I admit that I think chelation has little science behind it. Louise
  4. Unfortunately - EVERYONE with these illness gets told this at some point When my daughter got sick, they said it must be mental because she was not getting better - what does that mean. She went through 5 - yes 5 separate psych evaluations. Each one said they thought this was a physical disorder SOOOO the pediatrician would insist on a 2nd, 3rd, 4th then 5th opinion. THEN one of psychologists LECTURED ME that I needed to be more assertive with the MDs since it was obvious this was a medical conditon!!!!!!!!!!!!!!!! I thought I would loose my mind!!!!!!!! WE could not win!!!! I see this all the time with pts. I am a nurse midwife. Pts with chronic pain are told it is "stress" all the time. Sorry you had to go through this but it is thw way MDs are taught. If in doubt - blame the pt. Louise
  5. I know that for my daughter - dietary restrictions have made a huge difference. In 2006 , an immunologist/allergist dx her with wheat (not gluten), soy, dairy, egg, and peanut sensitivities. This was based on IgG blood tests. He said it was not an exact science but to try dietary restrictions to see if it helped. It did - big time. Of course in the last few months, she was dx with MCAD by Dr Castelles and started on gastrocrom. It is the best she has felt in 10 yrs. I want to recommend a wonderful cookbook for those with food allergies/sensitivites: The Allergen-Free Baker's handbook by Cybele Pascale. The recipes are amazing - good even if you have no food allergies. I could not believe the banana cream pie!!! Louise
  6. For those pursuing mast cell disorder, my daughter, Rachel, has been on gastrocom for 2 weeks (along with her other meds). She says it is the best she has felt in 10 yrs. She able to do aerobic exercise and not crash. Very exciting!!! It has been almost 10yrs since she got sick - 5 of those years were homebound. She has made steady progress over the 5 years with meds, diet, lifestyle modication and is attending grad school full time. There is hope!!!!
  7. Hi Unfortunately Julie is right - seeing a mast cell specialist is the best idea. My daughter, Rachel, has had several visits with Mariana C Castells, MD in the last few months. Rachel has added MCAD to her dx list and more meds: gastrocrom and something else that I can;t remember right now . RAchel is in grad school in Boston so it made it a bit easier for her to get into see Dr Castells. Good thing I kept her on my insurance - the tests and meds are pricey and would not have been covered by her crappy grad school insurance. Rachel was impressed with Dr Castells - kind of the "Blair Grubb" of mast cell stuff. Good luck!! Louise
  8. I have thought that this is the basis for my D's POTS for a while. 6 months before she got sick, she started having random severe flushing episodes and gastointestinal problems. She is now living in the Boston area. She has an appt with Dr Castells in Feb. (FYI Dr Akins, formerly at U of Mich, is now in practice with her). Rachel already takes H1 and H2 antihistamines and is on a restricted diet. She was dx with food allergies/intolerances 3 years ago by a pediatric allergist/immunologist. It has really made a huge difference in her life. I am hoping Dr Castells can fine tune her meds and maybe add gastrocrom. I am so grateful that this site introduced me to this aspect of POTS. Louise
  9. Aquadiva This is a common problem. Many docs (even so called dysautonmia specialists) don't know the drugs. It is the reason we go to Grubb. It seems that alot of people do not do well with the beta blockers. For my daughter, the order was florinef and wellbutrin xl,midodrine, mestinon. I do not understand why these docs have not read the research out there. I was able to get someone local to start the florinef (she knew Grubb and thought highly of him). Of course, she 1st wanted to know if we would like to wait and she how she did on her own. At that point she had been homebound about 2 1/2 yrs and used a wheelchair alot. Uh - no Louise
  10. http://www.theheart.org/article/1119697.do More confirmation of the FDAs decision
  11. Hi Julie Does he have(or had) an IEP, SSI etc? If so that makes it easy. Otherwise I would ask the scholarship what documentation they require. I expect a letter from his doctor would be adequate Louise
  12. (((((Caterpilly)))))- For my daughter, we found low doses of alot drugs works best for her. Midodine is only 2.5 mg 3-4 x.day. Mestinon is 30mg 2-3x day. Florinef is .1qd. wellbutrin xl 150. Lots of H1 and h2 drugs. Diet management. She started each med at a 1/4 -1/2 usual starting dose. She would up it until side effects bothered her. If she noticed ANY benefit at the lower dose, she stayed on the drug while we added a new one. Diet is very important for her. This seems to be different than doses alot of people use but it took from homebound for 5 yrs to school fulltime (though suffering miserably this week . Louise
  13. I have no idea what they mean about a test!! The health care organization I work for does 100s of IUDs each year. I suspect they try sounding 1st but I see no point in that at a separate visit. That is done at time of insertion. If you can not sound then; then no insertion is done. (sounding is using a narrow device to see if you can enter the uterus far enough to place an IUD). Doing that at a spearate visit before hand only increase cost and pain. I don't think this doc does many IUDs. Trust me experience helps with insertion!!! I don't see a big demand for implanon. For those who want it, I suggest a trial of Depo 1st, similiar side effects and no incisions involved. EMAIL me and where you live; I may be able to offer you another place for a second opinion. I really recommend a second opinion. No offense but I am not impressed with the options your MD is offering and his education on these issues. Print out someting on POP and call you doc. He should be able to start you on that immediately. Geez I can't believe how complicated some docs make this stuff. I have to say lots of docs in private practice send their pts to us for IUDS because of our experience with them (using we do them cheaper too since we get a volume discount. Louise
  14. While I agree that some cynicism is appropriate; there is also reason for optimism. I will continue to monitor the situation but I am still celebrating!!!
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