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Christianmom

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Everything posted by Christianmom

  1. I don't post very often anymore, but my thoughts and prayers are with all of you. We have been down that long road of recovery with our son, and we know what you are going through. God has graciously given us our son back. My son is a lyme patient of Dr. H and he will be weaned off antibiotics starting next month. He is doing very, very well--living a normal life, working, going to college. As part of his treatment, Dr. H has my son on anafranil. It has been very helpful because my son was sick for so long that much of his OCD is ingrained. My son says the anafranil does nothing to ta
  2. I'm sorry for what you are going through. My son had penicillin by shot several years ago when he was really, really sick. (At the time we thought he had PANS but he really had lyme.) The doctor said it should bring immediate relief, but it did not--it made my son much much worse, and it took him a few weeks to get back where he was before the shot. He also has had glutathione by IV twice and did very poorly with that as well. I don't know why. Maybe he just can't tolerate anything that goes into his system too quickly. But he tolerates oral antibiotics well.
  3. Thank you everyone, we are very excited for him. MomWithOCDSon, do you use regular hydrogen peroxide like you get at the drug store?
  4. Hi Everyone, My son will soon be attending his high school graduation and his teeth are badly stained (I think from minocycline but not sure which antibiotic has caused it. He recently stopped minocycline.) He just had his teeth cleaned six weeks ago, and the stains always go away after a cleaning. But I really don't want to pay for another cleaning and I would like to get some nice graduation pictures. Does anyone have any ideas? Thanks!
  5. Hi beerae22, Sorry for what you are going through. When my son was at his worst three years ago, his worst OCD was related to food. In fact, it was the only clue that anything was wrong with him--he is asymptomatic for lyme and strep. His OCD thought was that something bad was in his mouth, so he couldn't put food in his mouth or swallow. He had several variations of this thought. It was the worst OCD we ever had to deal with because the lack of food weakened him making it all the harder for him to deal with his OCD. I think the wake-up call for us was when our doctor (Dr. T) at the
  6. My son just started Bryon White A-P for parasites. I was wondering if anyone has any experience with this particular Byron White formula. Has it helped anyone's child? Thanks.
  7. My son is already on Klaire Ther-biotic detox--2/day. He is also on Jarrow sacc--4/day. He had been on 2 Jarrow sacc/day, but his doctor upped the sacc. to 4/day when my son recently went on Clindamycin which is known to cause c. diff. But it is is possible my son has had c. diff for some time, unrelated to the Clindamycin.
  8. The c. diff was found through the Organix Acid Comprehensive Metametrix test (dysbiosis section). It is a urine test that tests for bi-products of c. diff. My son's number was pretty high--several times the normal limit. So I am pretty sure he has a c. diff problem. He was also recently on clindamycin which is known to cause c. diff. My son's LLMD had no problem ordering the medicine, though she was not sure it was causing his OCD (though that is what most doctor's say--I am use to that response). My son's only symptom of infection is severe OCD. He has really never had any signi
  9. That's what I thought. The doctor suggested 4 weeks a Flagyl and then test two weeks after that. That doesn't seem like long enough. How did you treat the c. diff? Did the re-test come back negative?
  10. My son has been on Flagyl for almost a month now (500 mg. 3/day) for c. diff. He has no normal symptoms of c. diff, only severe OCD. The c. diff was found through the Metametrix Organix Acid Comprehensive test (specifically through the Organix Dysbiosis Profile). It is a urine test. For those of you whose children have had c. diff, how long did you wait before re-testing. My fear is that if we test too soon, it will come back positive even though the infection is gone. Thanks!
  11. Thank you for your reply. Did your C4a come down with mold treatment? As I mentioned, my son's is now normal. I am going to mention this at my next appointment and see if possibly for now we should not do this test. I'm not sure the doctor realized my son's c4a is now normal. The test is $699 and hits the out-of-network deductible, so basically we would pay it all ourselves. The test, however, does seem to be a very good one from what I've read on the internet . Maybe it is more conclusive than the Shoemaker panel. If it wasn't so expensive, I would have it run, especially since i
  12. My son's doctor recently ordered this test which is very expensive. I was wondering if it is necessary since my son had the Shoemaker mold panel run two years ago. He also recently had the C3a and C4a rerun and both came back in the normal range. Here are my son's results from his Shoemaker panel run two years ago: 1. C4a -- Jewish Health 8371 (reference range: 0-2830) 2. C3a -- Jewish Health 240 (reference range: 0-940) 3. HLA DR -- Gene 1: (07, 02, -, 53, -) "mold susceptible" Gene 2: (08, 04, - , - , -) "
  13. My son's doctor recently ran the Metametrix Organix Comprehensive Profile test. For the most part, everything can back in the normal range, but one marker came up pretty high--DHPPA. I have been trying to understand what this means. Great Plains Laboratory has a similar test that distinquishs between DHPPA and HPHPA. From my understanding, Great Plains is saying that the DHPPA marker is just a marker of good bacteria and that HPHPA is the important marker for clostridial. But Metametrix only tests for the DHPPA marker and lists it as a test for the clostridial species. The reason for
  14. We are for sure having the test done, so I will post the results when I have them.
  15. Dr. H just ordered this test for my son, mentioning that it might find a detox problem. I was wondering if anyone else's child has done this urine test and if the results were helpful. Thanks! http://www.metametrix.com/test-menu/profiles/organic-acids/organix-comprehensive
  16. My son was given a glutathione IV-push at his last visit with the LLMD on Friday. He started doing poorly just a few hours afterwards and is just tonight coming out of it. I was wondering if anyone else's child has had a negative reaction to IV glutathione. It is not a sulpha allergy because my son does fine on Septra and Bactrim (two sulpha antbiotics). I would appreciate anyone's thoughts.
  17. My son has been on parasite treatment twice in the past. Both times he was at his worst and the parasite treatment pulled him out of the worst. But it did not get him anywhere near to complete recovery. Maybe took him from 0% function to 30%. This time my son is at about 60%-65%. (Though really it is hard to give a % to his progress. Some OCD is much, much better even almost gone, while other OCD is still horrific.) Hopefully the parasite protocol will bring some improvement, especially if the protocol is done 4 times. But maybe not since he has already been treated for parasites twice. We wil
  18. Well, I'm not sure I'm the best one to answer this, but I believe the thought is that if a person has lyme, they also may have a problem with parasites. Though everyone has parasites to some extent, people with compromised immune systems because of lyme, etc. tend to have bigger problems with parasites because their compromised immune system keeps them from being able to rid themselves of parasites naturally. The parasites this protocol is treating would include all parasites (intestinal, hookworm, tapeworm, etc.) except babesia which is treated differently. The doctor is pursuing this p
  19. My son was put on a variation of this protocol: http://www.michaelharrah.us/parasite-protocol/protocol/168-dr-klinghardt-parasite-protocol My son has been on this protocol before, but only once. The doctor ordered 3 refills on the meds, suggesting that he wants to repeat the protocol for a total of four times, as is suggested at the the end of the link here. I was just wondering if anyone else had tried such a lengthy parasite protocol and what the results were.
  20. To anyone whose child is being seen by Dr. H in NY for lyme: I would like to compare notes on the parasite protocol Dr. H just ordered for my son and your child's protocol. Would you please PM me? Thanks!
  21. Try putting "URGENT, NEED REFILL" in the heading of the e-mail so that Dr. T knows it is important and needs to be read immediately. This worked for me when my son was his patient.
  22. philamom -- Thank you! I'll look into those websites. Hopeny -- Thank you! I have the book "Cure Unknown." I'll look it up. My son has already been on arteminisin for a year. I don't think that is an answer for him.
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