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SSS

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Everything posted by SSS

  1. I remembered something else: Applegate Foods makes organic, no nitrates, high quality frozen (GF/CF) corndogs, chicken nuggets, no nitrate bacon too. Ian's foods makes fish sticks.
  2. My favorite website for baking is Elana's pantry I also have all 3 of her cookbooks, she uses primarily almond flour, coconut flour, coconut oil, honey, but I LOVE her food. And, there are not a million ingredients to purchase. My favorite products for dd to purchase in the grocery store: Udi's bread, bagels, dinner rolls. You thaw and eat them fresh. They also have muffins. Amy's frozen food has a microwave organic GF/CF/SF macaroni and cheese that is good. Those are my secrets. One more: I used to buy frozen online products from Kinnikinnick Kinnikinnick all is made fresh, then cold shipped to you for only $10. They are Canadian, but ship USA. I don't use them anymore since so much is now available in the grocery stores, but there it is. HTH.
  3. Here is a great explanation on IgM versus IgG http://lymemd.blogspot.com/2014/04/the-igm-question-is-it-chronic-lyme.html Alright, off to play with my kids and bake :-)
  4. Your question takes a lot of effort to respond- so briefly: It is best to have an LLMD explain this to you- and I really hope with that test, you do book an appointment for your child. There are some tagged posts at the top of the forum (I believe) that go into some details about Lyme testing- you should read through- and lastly: the basic ELISA test that mainstream medical will run as a test for a Lyme disease is notorious for negatives when it's actually a positive. In fact, the state of Virginia passed a law that with every negative ELISA result, there is to be included a document that states: (basically) 'This test often gives false negatives.' Other states are trying to follow suite and get legislation passed. Lastly, as hard as it is to believe (although maybe not) The person from the CDC who decreed this ELISA is to be used and followed by insurance Dr.s in determining Lyme disease, actually holds a patent on the ELISA. How that's legal, I'll never know. Sorry, welcome to the Lyme wars. 'Cure Unknown' by Pamela Weintraub is an excellent read.
  5. A new to me test from Metamatrix, called ION, requires morning urine and blood draw before eating, and gives results for: Functional Deficiency Markers for Vitamins B1, B2, B3, B5, B6, B12 and Folic Acid Vitamins A, E, B-Carotene and Coenzyme Q10 - (serum) Essential Elements - (RBC/Whole Bld.) minerals, including Zinc Amino Acids - (fasting plasma) Fatty Acids - (plasma) Organic Acids - (overnight urine)- Yeast and bacteria! Lipid Peroxides (TBARS) - (serum) Homocysteine - (plasma) Our Dr. ran it through my insurance costing $169., normally around $800. Awaiting results for dd on it- http://www.metametrix.com/files/test-menu/interpretive-guides/ION-IG.pdf
  6. Hi- I mentioned this book in another thread: The Beginner's Guide to Lyme Disease by Nicola McFadzean, N.D. forward by Joseph J. Burrascano M.D. It's wise to educate yourself about Lyme treatment - But Wow, huh? Lyme diagnosis knocked my socks off right out of the ballpark with shock. If it helps I'll share: my dd took an almost 2 year break from treating infections. We started back up again almost 2 weeks ago, first with Biaxin, Nystatin, then added Ceftin a few days ago. (*no jinx*no jinx*) but I swear, OCD is gone. She is calm. She read a book outloud to me today (no way before, couldn't get her to read at home to save my life.) Now, there are short periods of die off. But nothing like we were living with the last year off treatment. Detox here is work and $$ Lipo glutathione, Epsom salt baths daily (she now agrees to them!) major quality probiotics, GF/CF, An Oxy powder capsule in the middle of the night to keep bowels moving. I ordered Pectasol-C to try as a binder, and charcoal capsules for possible slivers of Tindamax down the road. She is now running low grade fever die offs. The fevers are reminding me: she has Lyme!
  7. Lee Silsby Pharmacy/ Our Kids ASD (maker of Enhansa) is great about offering samples to buy- I don't see trial doses of Enhansa for sale currently, but maybe you could give them a call (excellent customer service.) I use Enhansa daily. It's the one supplement I won't give up. I tried running it through my insurance, but it wasn't a big savings for me. I also like Longvida, sometimes by googling VRP offers buy 2 for 1. Now, for my dd, it used to make her hyper, which I believe was a phenol issue, but it did pull out a dormant virus when I did a 30-45 day protocol ramping up with it then ramping down back off. This was years ago. I've been afraid to rock her boat with it again, but it would be great instead of ibuprofen.
  8. I think you are asking the $10,000 question: Treat/ eradicate all underlying infections and PANS is gone, or reset the immune system and PANS is gone, or treat/ eradicate all underlying infections and then reset the immune system (if necessary) and PANS is gone. D.) All of the above. The kids in recovery have all done each individually to achieve, I believe, there is no set formula- for the most part. What I do know about Bartonella, and Lyme disease, is that they can be difficult to eradicate if chronic (had > 1 year) and it takes time. And slogging through die off. And it's hard work, all the detox protocols, note taking, research. I also know first hand with my dd leaving them untreated, when symptomatic, is a poor quality of life. It is quite challenging with Lyme infections and PANS, and oh yes I think Bartonella can be destructive and cause OCD in our kids. But there is hope. I have hope again since starting my daughter back up on antibiotics for Lyme and co- infections.
  9. A very good book for learning about Lyme treatment The Beginner's Guide to Lyme Disease by Nicola McFadzean, N.D. forward by Joseph J. Burrascano M.D. Very thorough, easy to read, explains antibiotic combinations, herbs, detox, diet, emotional, co-infections.
  10. I was hoping someone else would reply to this, because my thoughts are tainted with the hardship and strife of trying to treat and recover chronic Lyme. And, my answer is not moral. Is your dd currently on daily antibiotics? If not, and you need some, I would lie. I would tell the Dr. it was an imbedded tick, you live in endemic state, you need 30 days at least. Take pictures of the rash for the future if necessary.
  11. Here is my .02 cents. If the A-L tincture does not give you improvement, or he refuses to take it, I would tell the LLMD this, tell them you are dealing with PANS, it's been a real suffer. I am sure your initial consult was not cheap. You mentioned trying Amoxicillin and Augmentin with no real gains- what about Azith or Biaxin? I say this because after a long treatment break off antibx., dd recently went back on antibiotics (Biaxin, suppose to add another next week) and OCD is GONE. No more pacing around the house. No more brain caught up relentlessly on an idea, plaguing her, then me, all day. For whatever reason, could be the anti- inflammatory aspect, (no Myco P here) Azith. and now Biaxin class of antibx give my poor child relief. I'm at the point with PANS where I just want something that works ;-). Y'know?
  12. I shouldn't have wrote 'wow, no PANS' that was dumb of me- I'm sorry, what a dork. I am very tired today, too! I did just go read Moleculera Labs website after realizing I probably shouldn't be commenting on old knowledge from a bad memory, and it does not say the Cam K number is THE number, rather it looks at all 5 results, oh and by the way, it's a clinical diagnoses, and I am not a Dr. nor a genius, sorry again! Wish I had something witty and encouraging to end here with (where's LLM?) but instead know I'm sending you good thoughts fellow mama, and you are not alone.
  13. I thought the CamK II number itself was the indicator of PANS. With our test results, I received a graph with explanations. My test was done through the University, before the new lab was open tho. Also, perhaps if the child is not in a flare, the CamK II number does not register as high. I am really not an expert, just hadn't looked at our test in a long time and thought I'd chime in.
  14. Wow, so no PANDAS/ PANS. How do you feel about that? I was just going over our CamK test (it's 3 years old) as we are having a new consult, trying to get paperwork in order, I couldn't find anything about the tubilin, although my dd's was normal, and I can tell you I don't think her gut has ever been problem free. I've never heard of anything on this test relating to gut issues. Perhaps it's related to tics? I've heard it tossed around that some of these neuronal measurements may indicate a child sides more to OCD, or more to tics- but I think it was more speculation.
  15. Oh no, I'm so sorry. My first thought was also Doxy burn because they're like no other, but then see he is off of everything, and out on his own. This is the fear- anxiety or anger spikes, the immune system/ inflammation run up with no modulation, can't handle it. Maybe when he wakes up again/ calms, this will be the lesson that he needs to remain on some sort of medication/ treatment? Because I don't think it was the actual pain of a sunburn (and sounds like ER thought the same thing.)
  16. We used PharmaNac at the end of last summer when my dd started skin picking. It's expensive, but IMO, the best one. If you google PharmaNac (it's N-actyl cysteine in the most absorbable form) you will find some interesting studies, one by Stanford Medical. We used 2 boxes, started out 2x a day, tapered off to 1x a day- she stopped picking skin- it was absolutely compulsive.
  17. I am being lazy and not looking this up, but, I understand you make this/ ferment is the final product a yogurt you eat? The kids are willing to eat it? (I imagine at the price they have no option!) Thanks!
  18. Thanks Pow Pow for the information- good to know! Cara, Bravo is very intriguing! So glad for your improvement! Of course it's so expensive, right? SF Mom, Thank you, I am PM'ing you----
  19. Pow pow, thanks for sharing your story on the Hash. thread- what an amazing recovery your daughter is in- I got very hopeful. She is quite lucky, you worked very hard for her- Pex, IVIG's, extended antibiotic treatments, steriod treatments, and seeing top specialists. I can't imagine what that must have cost- did your insurance cover all of it? Flying, traveling- I can't offer all you've given your daughter. My family has already sacrificed quite a bit. As far as steroids and Lyme, hey, if steroid burst pulled my kid back to content and happy, that's the goal. It didn't for us, but a 2nd HD IVIG did- until it wore off 6-8 weeks later. Was paying cash out of retirement fund. Neurologist on Friday suggested a find a specialist to do monthly IVIG's, and fight my insurance company to approve them all. Said I'd probably have to fly out of state. Then shrugged shoulders at me. At PANDAS West Coast symposium an excellent video I watched gave a reminder of the 10's of thousand blood donor's involved in an IVIG- and what are they able to test and really clean that product? Cara, 2 LLMD's told me: no symptoms, no treatment, even if a screaming positive test- You sound in a pretty darn good place with your child- I agree with others, I'd try to stay as healthy as possible, keep a close eye, and try and live some life, regain some normalcy. Because this whole thing can really take a family down-
  20. God I love this place. After I posted this, went about my day, and this morning's appt. started to catch up to me, and despite my 'seize the moment' resolve, I started to feel like I was all alone (again) fully responsible and isolated on an island. Then I logged back on and read the replies. Thank you-- And I did sign up for premium membership- the very least I can do, I figure.
  21. I think I'm going to crack my head open and let it spill out on the sidewalk. This is the same neurologist at leading metropolitan hospital who told me a year and a half ago at our last visit: 'I've got 2,000 kids exactly like yours throughout the city.' 'Oh yeah', I said, 'what do they have, what are they diagnosed with?' 'Autism' he said. So today I go back saying all the trials of pharmaceutical prescriptions we tried after seeing you have paradoxical effects: SSRI- ramps up OCD to crippled. Stimulants- ramps up OCD to crippled. Risperadone and your Abilify: manic, pacing, speed talking, poor academics, give me food! Eat! no scary rages, tho. Go through our history (again) although I never say the word Lyme, because that's just crazy talk, right? 'It's PANDAS. You need a PANDAS specialist. It's the immune system.' I went there to see if we could do a trial of lamictal. I didn't get it. He said I needed a child psychologist for that-meanwhile I've got buckets of risperadone, which I've come to absolutely loathe. We have an appt. with LLMD next week after long break. Going to retest Lyme, and ask for an OAT test, beg for Biaxin since that was our last miracle. Appt. in 2 weeks with our specialized Ped. who will probably let us try lamictal. My take away? I am trying to stay in TODAY. Just today. Do what we can as it comes, to try and make it better. And truly, I thank every single person who has gotten the word out on PANDAS/ PANS. Although these Dr.s have no idea what to really do about it (and who has the single answer, really?) At least it is RECOGNIZED. At least we are now saying words like immune system, gut microbes. So, God bless you. And I plan on upping my ACN membership since hey, I really do have a PANS kid ;-)
  22. Please be careful opening up a minocycline or doxycycline capsule and mixing them- these 2 particular antibiotics can burn going down out of the capsule. I think you are going to have it compounded into a liquid- perhaps if treating Dr. writes 'MUST' or something on the script, insurance might cover it?
  23. We are seeing a neurologist on Friday (non PANS, we've seen him before a year or so ago) and I am going to ask for lamactil. We put dd on risperadone awhile back because of rages- unlivable rages- and while it tamped that down, risperadone does nothing, nothing at all for OCD, and I've come to hate the drug. I tried tittering down and taking her off, got to all the way off just this last weekend, and it was horrible. Very horrible. Had to put back on Risperadone. So I understand. I find a bipolar dx so hard to believe with 2 parents with no bipolar on either bloodline. But the mania I saw this weekend. I don't know anymore.
  24. Haven't tried it, and too tired to try and figure out the science, but I read about it last week and inquired about being off antibiotics before testing, they wrote back and recommended 2 weeks off before test. Can you update if you hear more reviews or comments from Dr.s? Thanks-
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