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Everything posted by ptcgirl

  1. LLM, even more confusing to me is that my DD's homocysteine levels are low instead of high which I know is better in some ways but how do I supplement when all the info I find is for high homocysteine levels. I'm going to read up like you suggested. So tricky but interesting too...
  2. Wine is helpful for sure..... I just got my DD's back. Just posted it to LLM privately but in case any one else has any insight.... Are these pretty typical? My daughter's results showed homozygous mutations in: VDR Bsm MTRR A66G SOD2 A16V Which I'm guessing means to supplement with Vitamins B12 and D??? I don't really know what else to do. What kind of doctor could help look at this stuff or is it all up to us.... (as usual)..... And the heterozygous mutations were in: COMT v158M COMTH62H MAO A R297R MTHFR C677T MTR A2756G BHMT-04 BHMT-08 CYP1A2 164A>C Cyp2C9*3 A1075C CYP2D6 S486T CYP2D6 2850C>T GSTP1 I105V NAT2 I114T NAT2 K268R Any opinions greatly appreciated....
  3. My biggest piece of advice: Don't be afraid of IVIG. It has helped my dd incredibly. She is now on her 7th one. It took about 6 to really make the progress she needed. She also had complications due to lyme and other coinfections. IVIG is wonderful in my book. Really saved my kid, thank GOD. She is better than she's been in years. As close to 100% as she will likely ever be. Amazingly good.
  4. I'm trying to listen but can't hear anything. : (
  5. Pooh! I wish I had read this. I will just listen to the recording. Thanks for sharing it.
  6. Such great news!!!! Thanks for sharing!!!
  7. Rich also said to watch for low potassium levels as the methylation block lifts. Adding in additional potassium (bananas, orange juice) to the diet could help. ~Orion That link didn't work for me. Can you post a new one?
  8. This is what I've learned through the IVIG process. My DD13 just had her 6th one. Some of the IVIGs were hugely successful and others were kind of blah. I've finally figured it out although it will seem obvious when I state it. When she had an active infection that was not being treated the results were not as good (still an improvement, but nothing in comparison). When she was infection free, the results have been glorious and amazing. IVIG is a reset button for her. I like to think of this analogy: if you have a vacuum that has a clog that you don't (or can't!) remove, no matter how many times you hit the reset button (a button designed to tell the vacuum it is okay to start trying again) it still isn't going to suck up your dirt/work properly. Now, if you take the clog out, AND hit the reset button , then the vacuum starts to work well again. It may still have a few bumps along the way of course because dirt is always coming at it, but it still functions and works. Until the next clog..... This is just the way I view it from our experiences. I'm hopeful that we are building up her immune system so she doesn't get so clogged. She just got over a virus and seems to be okay, so I think (praying!!!) that she's finally getting to a point of not having to get the IVIGs (or at least as often). They have been a true life saver for my daughter. She had PANDAS since just before age 7 and we were really afraid nothing would work. She is about 90%. So worth everything we've paid ($ we had to ask family for), the travel (we 2000 miles each IVIG), homeschooling, etc. We have our beautiful, sweet daughter back. I worry all the time that we will lose her again, but I cannot over state how much they've helped.
  9. Good luck! How is it going? How is that different from regular CBT? I haven't heard of CBiT before....
  10. Have you gone through any CBT/ERP or tried IVIG?
  11. Very interesting! Yeast was a HUGE player in my DD's case. It took two months of diflucan and nystatin to get it under control (for now, at least....).
  12. You mentioned that she backslides when she gets sick, which is often, so I'm wondering what you are doing to support the immune system? Since we started doing that in earnest, as well as controlling yeast (but we do use diflucan, as well as a LOT of probiotics, and are also treating other infections...including several viruses, lyme, co-infections, and also treated mold that turned out to be a problem, we haven't been getting sick as often or as hard as previously. BTW, for the immune system, besides supplements, my children do regular chiropractics (found a great person in network nearby), and I was getting regular acupuncture (worked great until the mold became a huge problem, but then repeated, and I'm getting a lot better.) Everytime he would stick a needle in that made me jump (not all did, mind you), I would ask: "What is that?", and his response typically was "immune system!" 90% is FANTASTIC! Tpotter, I agree that we need to do something for her immune system. Just knowing what else to do.... Do you ever feel like our kids are guinea pigs? I just had her do the 23andme test. When we get the results I'm going to take her to a local holisitic/md and see what he thinks. Since we already know she has a mthfr issue, I want to make sure other stuff isn't involved too.
  13. I'll put it this way, on the blood test my daughter only showed mildly allergic to cats and significantly allergic to dust. Nothing else. When she had the back test done, she was HIGHLY allergic to just about every environmental factor out there. I wouldn't go by just the blood test particularly if you are noticing signs of allergies. Also, allergies can change. One year they may not have them and then later they will show up.
  14. Tindamax led to a massive herx for mine. We stuck it out. She couldn't get out of bed for a month. A lot of pain and her pain tolerance is incredibly high. All the symptoms of Lyme (ones she never had before treatment) came out: chest cavity pains, joint pains, etc.
  15. They absolutely play a role in PANDAS for mine. My dd is allergic to everything outside and spring makes things terrible for her. This year we are really being aggressive about making sure it doesn't turn into an infection. She takes Singular and a double dose of nasal spray along with augmentin. As long as it doesn't go into an infection she seems okay. As soon as she starts coughing we give her mucinex to clear it. So far she is doing okay, but it is still early in the season. God willing she will continue to be alright because for the past 6 years every spring leads to infection and major flare. Generally hits at the end of April for her. Time will tell.....
  16. Thanks for the info! We are waiting until dd 23andme results come in. this may be something that applies to her. I wish, wish, wish it didn't take so long for the results to come back....
  17. My DD13 got PANDAS when she turned 7. This has been a rocky road for her. IVIGs, she's had six now, have been crucial for her. The first few just reset but then she would falter around week 7. She really doesn't seem to be backsliding now unless she gets any kind of infection (which seems to always happen!). Even with infections she doesn't go back to anywhere near where she was before, but we'd like to get it to no backsliding at all. Controlling candida (without Diflucan and Nystatin) is our newest battle. Yeast is a hard one when you take long term abx and eat a typical American kid diet. But she is about 90% (sometimes higher!) which is pretty fantastic for us. We hope to stop having to do the ivigs eventually but I'm so glad we did/do them. Worth every single penny that we don't have.
  18. Hi Maria! Yes, we've all been in your shoes or very near to it. You are not alone. Your son may have a different type of infection as well. Pans includes a whole lot of different infections. You will want to check him for a variety of them. Strep, Mycoplasma, Lyme, yeast (candida), pertussis, and sinus infections(major allergies) have all set my dd into major flares over the last seven years. But his strep tigers are still too high and yes that could be causing. We've done the Zoloft thing and there is a place for it with our family history but it is a tough decision for everyone. We are also doing ivigs every 8 weeks which have helped amazingly. According to our psych dr there will always be a residual amount left but it is tiny in comparison to where my dd was a year ago. Plz feel free to pm me at any time. Good luck. Look into the nimh site for the ivig trial
  19. Our pandas doc really wants ours off the antifungals (diflucan, nystatin), so I'm assuming they must be bad for her somehow. Didn't ask specifically though. Hard to say. All of this gets so overwhelming, doesn't it?
  20. Spring is always the worst time for mine. Infections due to allergies that get out of control in the Southeast. Pandas started for her in late Oct 2006 after a strep infection, though.
  21. Candida was a MAJOR player for my DD. diflucan and nystatin needed to fight it. Finally just got a negative blood work up after being on it since January. I've taken her off of it for the last couple of weeks and she seems to not be doing as well. I hate to keep her on antifungals but it works for controlling the OCD for her. Ugh. Yes, it is a blood test that she had done but I've read some do a spit test?? quote name='trintiybella' timestamp='1363816830' post='156217'] Is it usually a urine test or stool test that tests for candida?
  22. Great news! Love to hear something positive like that!!!
  23. Good info. Okay, I will wait to get the results back for 23andme (for the CBS results, etc) for my dd before giving any supplements. I just ordered the kit. What's another two months to wait?
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