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Christianmom

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Everything posted by Christianmom

  1. We are temporarily without insurance for my son and his lyme doctor has suggested possibly trying IV rocephrin with a PICC line after the next visit in a month. We may have insurance again by then, but if not, is there anyone without insurance who could tell me the cheapest way to get a PICC line and IV-rocephrin? Thanks!
  2. Nancy, One thought might be to have him take this class without having to worry about the AP test at the end. In other words, he would be well prepared to take the course in college, but would not be under the stress of having to actually get the material down well enough to pass the AP exam. It would at least take a little pressure off him. If he wants to skip the course, in college, perhaps the college he wants to go to will allow a CLEP exam to pass in for it. CLEPs can be taken anytime, at his convenience--no pressure. Cost about $100. Not all schools accept them, but it is a thought. My
  3. I have a friend whose has an appointment for her son to see Debbie McCabe for lyme treatment. If anyone has or is seeing her, would you please PM me on your experience so I can tell my friend what to expect. Thank you.
  4. So sorry for what you are going through. I as well have had PANDAS-believing (and chronic lyme-believing) doctors tell me my son didn't have PANDAS or lyme and that he simply needed psychotrophic drugs. Just move on, this doctor isn't right for you, though he may have helped others. My son as well had a high CamK (168) as well as sudden-onset OCD. Though my son has not had IVIG, he did have a year of PANDAS treatment with little improvement. I believe now his real problem never was PANDAS but that strep simply exacerbated an already existing lyme/bartonella/babesia infection. Lyme treatme
  5. I am looking into the "Bridges to Access" program (www.bridgestoaccess.com) to help pay for my son's Mepron. It is a patient assistance program through GlaxoSmithKline pharmaceutical that pays for Mepron and a few other drugs if you make below a certain income (the income level is fairly high). I was wondering if anyone has tried this program and what you think of it. Thank you.
  6. My son's Cunningham results in February of 2011 while in exacerbation were: D1--2000, D2--4000, Lysoganglioside--160, Tubulin--500, CaM KinaseII--168 My son's ONLY symptom was, and continues to be, OCD. Dr. T tried everything to get my son better. In the end my son was diagnosed with lyme. He didn't get better until we started lyme treatment with an LLMD.
  7. My son takes Doctor's Best High Absorption Chelated Magnesium, 4 tablets per day (400 mg. total) for detox, but mostly it helps him sleep at night. If he forgets to take it, he usually doesn't sleep well. His doctor said it is critical that my son get sleep in order to heal, so if the magnesium doesn't work, I give him 1/2 a sleeping pill. He has had to take the sleeping pill only about once a month.
  8. Nystatin is a drug to kill yeast, so I can see where it may cause a herx if there is yeast die-off. The dosage seems low. My son takes two 500,000 unit tablets twice a day for a total of 4 pills.
  9. I was curious which doctor's you have already tried. With positive lyme bands, I can't see have a PANDAS doctor can help you. Dr. T in particular, though he is very, very kind, knows nothing about lyme treatment as by his own admission. It seems like most of the drugs your son has been are drugs that a PANDAS doctor would try. I'm not sure what a PANDAS doctor can do for you unless you are looking for IVIG or PEX. And if you son has lyme, IVIG and PEX will most likely only give temporary relief. Any good lyme doctor should be very familiar with treating PANDAS. If the one you have is
  10. I'm so sorry for what you are going through. My son was positive for band 23, another lyme-specific band showing exposure to lyme. I asked Dr. H about this because I never really understood what the expression "exposure to lyme" meant. I said, "Does this mean at some point my son was bitten by a tick that had lyme?" He said, "Yes." So it didn't mean that perhaps a tick with lyme had crawled on my son causing the band to appear. For that band to appear, he had to of been specifically bitten, directly exposing him to lyme. I would think Dr. J would at least consider treating for lyme,
  11. I'm not sure who your doctor is, but you may consider getting another one if he's not prescribing the dosage your son needs. It is very easy to waste a lot of time on wrong antibiotics dosages and combinations. For us, we started out with Dr. T. Though I think the world of him and will always be grateful for his great compassion, if I had to do it over, I would have gone to an LLMD from the beginning, whether or not my son had lyme. My son in the end had lyme (as well as a reaction to strep), but it really doesn't matter whether your son has lyme or not. An LLMD can treat PANS because most lym
  12. Adam's discount pharmacy in PA has discount drug prices very close to what you can get by ordering from Canada. The website is adamsdiscountpharmacy.com. It takes about two to three days to get your medicine in the mail. He is unable to get generic alinia or generic tindamax. However, his non-generic tindamax price was much lower than CVS or Walmart.
  13. Hi Kathy N, Don't want to steal this thread, but basically after our experience with Dr. Elia in Nov. of 2011, I continued to work with Dr. T running lots and lots of bloodwork. Eventually things started strongly pointing towards lyme. Dr. T had already tried many antibiotic combos on my son without success (which is why we were pursuing plasmapheresis) and suggested I find an LLMD (though he encouraged me that he would always be there if we still needed him). We chose to pursue Dr. Klinghardt's natural treatment of lyme through Dr. Schwartz in Jenkintown, PA because my son had already
  14. Beeskneesmommy -- I should have clarified about the cost. When Dr. Elia was at CHOP, CHOP participated with my insurance, but Dr. Elia (though she worked for CHOP) did not. Therefore, she was covered as out-of-network. Most people have a high out-of-network deductible as I do, so basically we paid the whole bill. I do believe she gave some discount for paying cash and that the actual bill was about $750. In terms of Dr. Elia being a place to go if you feel your child needs plasmapheresis, I wouldn't in any way see Dr. Elia as a sure bet. In my opinion, she is far more likely to deny plasm
  15. Dr. Elia is a psychiatrist, so expect that your child will be fully evaluated psychiatrically by her. If your child is older, she will insist on talking with them alone (no other doctor has insisted on this with my son). I have been to Dr. T, Dr. Schwartz, Dr. Beals, Dr. Horowitz, and various other less-known doctors. None of them asked any of the personal psychiatric questions Dr. Elia asked. She made me very, very uncomfortable. She is a very kind person, but she is nonetheless a psychiatrist first, a PANDAS doctor second. Even though she gave a very kind evaluation of my son psychiatri
  16. My son just had the C3a/C4a tests run a couple of days ago and these are the Quest tests that I asked the hospital to order: http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=52642&labCode=QBA http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=42658&labCode=QBA I told them it was important that these exact tests were ordered so it would go through Jewish Health. I haven't gotten the results back yet, so I don't know if they actually did order the right tests. If you have trouble getting these Quest tests run, you can have the hospital send
  17. I would also add that a patient can have ONLY neurological problems with no physical symptoms, as is true with my son.
  18. So sorry for what you are going through. Yes, there is hope for older kids! I would hope that no one on this forum would give up just because of their chid's age. My son is 18 and he wasn't diagnosed until 16. If I were you I would look into lyme, bartonella (big trigger for OCD), h. pylori, KPU, babesia, parasites (big trigger for OCD), viruses, yeast, stool analysis (Metametrix), strep (even if his titers aren't high) and the meningococcal vaccine. I would also run the TGF-B1 which, if high, is usually an indicator of chronic infection. And as great a doctor as Dr. K is, he may not be
  19. My son was very well (80%) when I started this thread. Within the last three weeks he has taken a sharp turn for the worse (he is at about 60%). Doctor feels the decline is from bartonella and biofilms. This week he added biaxin/mycobutin to my son's Klinghardt "lyme cocktail" to treat bartonella more aggressively, and added Cistus tea to treat biofilms. My son is having a pretty bad herx as a result. So he is now not at a good place to be judging the glutathione, though he is still taking it. One other thing, my son's doctor did not feel the improvement from glutathione that my son h
  20. I don't know if you've already done this, but if I were you I would seriously consider lyme. My son has chronic lyme and his only symptom had ever been severe OCD. If the stool analysis showed "parasite of unknown taxonomy," I would consider the possibility that it is babesia. It was in my son's case.
  21. My son was treated naturally for h. pylori with Pyloricil by Ortho Molecular Products. I'm not sure how severe his case was, but after taking one bottle, he was no longer testing positive for h. pylori by ART. It is very expensive, but one bottle may be enough. My husband was taking it for h. pylori as well (he and my son have the same doctor) and my husband as well only needed one bottle.
  22. Thank you for your reply. Overall the IV-DMPS push had no affect on my son, so we made another visit to the doctor last week. He examined my son thoroughly and feels the regression is from bartonella biofilms. My son had been off antibiotics completely for almost a year (except for one short course for strep). Instead, he had been on the Klinghardt lyme cocktail. Because of my son's recent regression (he's was at about 80% and is at about 60% now), his doctor added Biaxin and mycobutin (basically rifampin) to his cocktail. We added the Biaxin last Saturday and the mycobutin last nigh
  23. My son's doctor recently started my son on a DMPS/glutathione/phosphatidylcholine IV-push to help him eliminate heavy metals from lyme biotoxins. His doctor wants the IV-push to be done once a month. He said it would help my son heal much faster. He suggested the treatment because my son had started to regress some for the first time since being treated a year ago. So far, it appears that the IV-push is helping my son out of the regression. He has done very well today. I was curious if there is anyone that has experience with the DMPS-IV push. Some things I have read about it are frighteni
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