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Everything posted by pr40

  1. also fixations, not being able to put things out of your mind. these can be intrusive thoughts but it can also result in inability to compromise. there was a thread a year or so ago with a similar question on OCD variants, if I remember correctly
  2. might be leaky gut -- esp if you can make the connection btw the stomach and the anxiety has she been seen by an gastro to rule out things that may not be related to pandas and autoimmunity?
  3. "Double check this, but if I recall, overdoing the methyl b12 can be undone with niacin b3." want to second jan251 it seems you overdid it you must have other mutations doing complete 23andMe might give you some answers try taking folate and b12 only once a week
  4. we use purtian's pride one pill of each olive leaf, fish oil, and enzyme CoQ 10 I am sorry but I don't know anything about fish oil increasing tics, or about olive leaf and abx
  5. if zpack helped, it is likely that antinflammatories should help, too Try ibuprofen if you haven't already in general, besides abx, you may want to have a strategy to reduce inflammation Usually fish oil (purified of mercury), olive leaf, etc diet changes as well good luck
  6. from what I know about encephalities, I don't see how antibody panel can tell you if you have it brain scan is usually used but they are not conclusive panel can tell you about the causes of the encephalities If I remember correctly, your symptoms may fit the encephalities diagnosis i would say this is encouraging that dr wants to check autoantibodies, can't hurt, right? except for the needle, of course good luck
  7. if you mean how to do it physically, apple sauce is a great help in swellowing pills if you mean behavior, we do reward We take away what he likes most whcih is screen time if he does not want to take medecine Unfortunately, to get better PANDAs kid needs to be able to take medecine best of luck
  8. i don't think anyone here can answer your question positively, unfortuntely it's possible that your lyme and her autism are related but it is also possible that your other autoimmune issues like celiac and hashimoto's are related to her autism and then her autism may be caused by something else entirely in your place, i would first puruse the long term abx and therapy (lowering inflammation, etc) that is recommended for pandas kids since it seems simpler than lyme treatment in three to six months you might begin to see changes in her best of luck
  9. just want to second what llm said about diet: you may want to go to omniverous diet. not sure that you can deal successfully with autoimmune conditions on vegetarian diet. their nervous system needs fat and methylation needs vit Bs.
  10. thanks for the answer. one more question, if you don't mind. which gluten/casein enzymes are you using? thanks again
  11. just want to second what nicklemama said, "would never accept a psychiatric diagnosis until PANDAS, PANS and Lyme/co infections had been thoroughly ruled out by qualified doctors." as you can see from many other posts on this forum, traditional psychiatric diagnosis and treatment don't hold water. Start your child on an anti-inflammatory regime, ibuprofen, fish oil, etc. long term abx, and see if there are changes.
  12. so happy for you. can you tell us what he is taking now and how much? thanks!
  13. i would do IVIG right away. look at the study result from NIH trial. they are very encouraging. on psoriaris, fish oil should be very helpful. make sure it is purified of mercury. good luck!
  14. wombat asks "pr40, when you say your son has "a strong reaction next day" to molybdenum, do you mean positive or negative?" negative, unfortunately. the day after that he calms down and, usually, improvement seems obvious. i give it to him in the evening, usually Fridays, to lessen the impact on how he does in school.
  15. great questions. my family has the mutation and my guess is that the answers you are looking for are a) individual (we are not just that one mutation, we are young, old, execrize, etc.) and impossible to mesure in any other but a very subjective way. positive result is that methylation cycle functions well enough. so, I think that you should try molibdenum every day with easy to do reduction in sulphur intake from food sources. We never reduced meat since grains give us other problems. We are now on one pill a week. DS has a strong reaction to molibdenum the next day. It's a balancing
  16. see if you can get a different diagnosis, not pandas. ivig may be approved by your insurer for encephalitis and low immunity or other similar conditions.
  17. not a herb, but also non invesive. transcranial therapy helps me. https://en.wikipedia.org/wiki/Transcranial_direct-current_stimulation if you are interested, i can tell you which device I bought and where i put the electrodes. before i started transcranial, I used melatonin 3mg. up to 10mg seems ok. i know you tried it. I sometimes combine it with 5htp.
  18. i don't understand gentic mutations well at all but want to suggest that given her mutations, epsom salt may not be good for her. it's high is sulfur. do check sulfur processing with her mutations. curcumin is also high in sulfur, unfortunately.
  19. Please don't dissuade others from considering coinfections if they have only ever tested for lyme. These can be stand-alone infections even if lyme is not an issue. Treatment is not similar or even vaguely the same. Babesia is a protozoa and will not respond to the antibiotics given for strep. It needs to be treated with antimalarial drugs or herbs. Bartonella is becoming resistant to many monotherapies and rifampin is often needed. I'm not saying that food sensitivities aren't involved. Our foods, especially conventional sugar, meat/eggs, dairy and grains are highly contamin
  20. it seems you have the option to do plasmapheresis and then, if it does not work, continue other treatments, including abx. I would, therefore, try plasmapheresis. examine the downside. is there one?
  21. sirena, there is nothing in your signature and we can't tell what it is that you tried other than what you metion in your post. I disagree with some of the posts above, even if the issue is caused by other infections, the treatment would be very similar or the same. you may want to look at qanni??'s post made today for some ideas. our son is agressive when he eats sugar and/or dairy.
  22. while you look for another dr, ask the one who have you abx to follow the usual protocol and prescribe profilactic does of abx. that is a standard procedure.
  23. "I am stuck at the crossroads of going with more antibiotics or looking into other triggers like diet, etc." not a crossrods at all, please try to think of it as complementary. and you are not done with the two either. supplements can help you child process toxins usually but whatever it needs to process. 23 and me is quite useful in quiding you through what supp are likely to be helpful fish oil w/out mercury is a must. also, forget about diagnosis and tests. sciences does not know for certain if there is a ts that is not somehow related to the immune system the question is what makes yo
  24. I want to second what Worrieddadnmom said, "I noticed you said pasta and rice as preferred foods. In our world what our kiddos like is most likely what is hurting them. That much starch and I would consider candida or at the very least a little bit of dysbiosis." carbo-hydrates are also bad for bacterial balance. It seems that our kids do better on very low carb diet -- there is some research on autisiam and low carbs, you may want to take a look at it.
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