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Everything posted by queenmother

  1. My daughter's alkaline phosphate was high at that age, as well. I was told that it had nothing to do with her issues but that it was usually an indication of a growth spurt. Given what we were going through at the time, I have always wondered about it myself. She is now 18 and we still have flares but everything is better than it was, probably due to antibiotics off and on for years now. Her titers indicate that mycoplasma is her big trigger but any other bacteria/virus seems to re-activate the mycoplasma.
  2. Haven't been on this site for a while which means we are doing pretty well here. :-) This was a HUGE issue for my daughter when she was playing tennis....or doing anything physical. After one tennis match, we literally had to take her to Urgent Care as she was totally out of control. I did extensive research at the time and came to the conclusion that it could have something to do with BH4 levels. I made this connection because she seemed to do well when she had one of those vitamin waters (I know they are not recommended by purists but they certainly helped her). Not the sugary gatorade
  3. We have seen a really nice difference here, too, since starting the DHA-heavy fish oil. For the first time ever, however, my daughter has been complaining of headaches. Nothing horrendous, mind you, but she has never complained of a headache until recently and she just turned 17. I have read that doctors are using fish oil to aid in healing severe brain injuries so I am hoping that there is some healing going on in there. Obviously, if they get worse or persist, then I will seek medical attention but, for now, she seems to be handling everything quite well. I started using the DHA-heavy fi
  4. My daughter's knee does that, as well, which is very hard because she plays tennis and does a lot of dance in theatre. Popped out for no obvious reason a few times and not when she was playing tennis or dancing. She was also being treated for Lyme, bartonella, and mycoplasma but I have no idea if it is related. I did read (research junkie that I am) that dopamine levels affect hypermobility in the joints and she is a ++COMT so I expect it has something to do with it. Sorry I don't know more but I have been curious, as well. QueenMother
  5. So sorry. My daughter has struggled with this but (knocking wood now), we seem to be having a nice long run of pretty normal, whatever that is. My daughter's big triggers are mycoplasma and bartonella. She also had strep in her gut confirmed by a stool test but it did not show up on any other test or her titers. Interestingly enough however, strep in the gut has been proven to be directly related to anorexia. Definitely build up her vitamin D3 levels as D is critical. Originally, we hit the mycoplasma and bartonella hard with a few months of doxycycline. Doxy treats both mycoplasma and
  6. blastocystis hominis was one of the critters that showed up on DD's stool test about 3 years ago. After treating other parasites - and h. pylori - it has not shown up again. I assume something in the pharmaceuticals, herbals, minerals, and ritualistic cleansing ceremony must have killed it. Just kidding about the ceremony, sort of. We were pretty desperate at the time. QueenMother
  7. Hello, dear. Not on forum much because of travels.....which means we have been doing well here. (HALLELUJAH CHORUS INSERTED HERE) Monolauric acid is (if I remember correctly) high in sulfur. If your child has CBS morph, proceed with caution. We had a great summer a few years ago when taking small doses (1 T daily in juice) of virgin coconut oil (which is monolauric acid). However, we do not have the CBS morph. I am a big fan and, if you google "monolaurin + CDC", you will see that even the CDC states that there is nothing more effective against virus (98% effective). That being said....m
  8. Thank you all so much for your input. I'm giving it a shot to see if we can resolve some of the restrictive eating issues. It could be a verrrrrry long flight if it throws her off-kilter. I hope it helps her as much as it seems to have helped you all. With a grateful heart, QueenMother
  9. My dd16 is scheduled to start clarithromycin in the am and I have been reading the insert. It states that it could cause psychosis and, Lord knows, we have dealt with enough of that with the disease so I don't want it with the treatment. I see that several of you have experience with clarithromycin/biaxin and I am hoping that you can share your experiences with me. I am doubly worried because we are flying cross-country on Wednesday and I really do not want to create a problem. She is currently doing pretty well, although we are still dealing with eating issues and a very short fuse. She
  10. I totally agree with everything these dedicated moms ( and dads) have already said. I would never accept a bi-polar diagnosis at this very young age. I know that you are worried because of your sister's condition but we all have a "different" fruit dangling from our family trees and that doesn't mean that your son will carry that same fate. There may be a genetic link and, in fact, your sister may have a genetic underlying condition that has brought about her diagnosis. How fortunate for you and your son that you have an opportunity while he is young to help correct any future problems.
  11. Sending prayers up and healing thoughts your way. qm
  12. Kind of intrigued by all the math and science.....even the music is basically math. Interesting. qm
  13. We are pretty new at all of this and do not have coxsackie as a trigger so I am not much help. I will say, however, that if you saw improvement with the advil, then I would definitely pay attention. You are fortunate to have a doctor who would even suggest PANDAS/PANS to you to begin with and I would strongly recommend that you follow up on it. I would suggest that you do a trial of doxycycline to treat the mycoplasm. It is a pretty benign antibiotic and well-tolerated by most and is recommended for myco. Since your son is so young, however, do not do it long term because it discolors tee
  14. Nary an engineer here. All business/entertainment. However....I always excelled in math and science and my PANS dd16 breezes effortlessly through honors and AP science and math courses with A's. (Thank God!) Interesting to see how many engineer-related. Kinda feeling left out. QM
  15. Thanks, JPDad! I watched it after reading your post and saw Dr. Trifiletti. Interesting that all the girls got better after starting antibiotics except for the one with Lyme. They reallly presented it unbiased because I wasn't sure if people accepted PANDAS or the psychiatrist who said it was psychological. Of course, it was late and I was tired so I may have to find it to watch it again. What did you think? QueenMother
  16. I still think you should give the GABA/magnesium citrate a try at night. Even moreso, given that he is only pooping twice a week. The mag citrate would help with that alone and it is a calming mineral anyway. Just don't give it within 2 hours of antibiotic. QM
  17. t.Anna, gaining an hour is definitely a step in the right direction! Great idea, SF Mom, to do a comprehensive stool analysis and check for yeast. And good advice, LLM, on possibly lowering the CBS load. As you lower the folinic and give TINY amounts of methyl-folate, you may see all of these moods and behaviours changing. Keep us posted. And I hope you continue to gain hours each night! QM
  18. Is it bad to admit that it helps me to hear that there are others out there dealing with the same issues we have had? I have found that, as long as she is not harming herself, we do better to give her paper and time alone. Many, many, many sheets have been shredded and it does seem to calm her. After a while, I go back to check on her and she will be watching tv and knitting or skyping with friends and it is almost as if the episode never happened. However.... if it is a really bad episode (and we have had many like the ones you described), things escalate quickly. I have learned to hur
  19. Very low dose folinic acid is definitely fine if there is a MTHFR problem but the methyl folate is still the one needed to bypass that mutation....and that, too, should be cautiously low and then increased slightly. Without the genetic testing, it is hard to know for sure, but since there was a problem with NAC, my brain immediately went to CBS problem instead of MTHFR. NAC is a sulphur donor and, if it is not tolerated, I would be cautious of anything that affects the CBS until I knew for sure. Folinic acid is not good for CBS upregulation. My daughter has MTHFR and COMT problems and she
  20. Dr. Y recommends magnesium citrate because the glycine in magnesium glycinate is a fair weather friend and can actually increase glutamate excitability. A little glycine is good but, depending on your genetics and your methylation block, it is a little risky. 50-100 mg of mag citrate shouldn't be too laxative but every kid is different. Definitely give minerals at a different time than abx. We find that zinc is best in the morning and mag citrate is best before bedtime. It is tricky getting everything in...probiotics at least 2 hours after antibiotics, minerals 2 hours after antibiotics, me
  21. I will give up my favorite high heels before I give up GABA and magnesium for my daughter! (And I looooove shoes!!!!) GABA is the single most helpful thing that we've done (along with hydroxyB12) as it definitely helps with anxiety and sleep....for all of us. GABA is not a methyl donor but is sometimes combined with theanine which IS a methyl donor. That's why I always suggest pure GABA. (Zen is a very popular product that is mostly GABA but NOT if you have a COMT++ or +- as it contains theanine, also.) Magnesium, as LLM stated, helps to counter the calcium but is also helpful with th
  22. Also, I forgot to add that Dr. Y says that you have to have lithium in place to transport the B12. Get some valerian root at your local health food store and put 3-4 drops (NOT droppers) in a glass of water and give at night. Valerian root is very calming but also has traces of lithium so it helps transport the B12. If you take a lot of B12 but are low on lithium, the buildup of B12 can cause hyper-edgy states, as well. Don't we all wish we had more diligent in our chemistry courses? QM
  23. First of all, I would stop the methylcobalamin and replace it with hydroxycobalamin. You can order this at www.holisticheal.com. I would also drop the folinic acid. The form of folinic acid you are giving is not ideal, according to Dr. Yasko. Folinic acid is a "formyl" type of folate that has to be converted to the "methyl" form. Regular folic acid competes with TMF. You want to get metfolin or folapro or order 5-TMF (you can also order this from www.holisticheal.com or get metfolin/folapro from your local vitamin store). Just make sure that it says 5-methyl-tetrahydrofolate. Give an ex
  24. You may have some genetics happening. If your son is COMT++, he may be very sensitive to methyl donors and those definitely keep you awake. Methyl donors include caffeine, theanine, curcumin, methylcobalamin B12, DMG and TMG, PhosphylSerine, coQ10, and even zinc late in the day....any of these can keep you awake if used late in the day. Melatonin is a methyl donor, as well, though usually ok in VERY small doses. Every cellular action in your body requires a methyl donor to activate it so it can perform its job. If you have a mutation of the COMT, then the enzyme is sluggish and can't use
  25. Michelle, I sent you a private message so check your mailbox. QM
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