Mayzoo
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Everything posted by Mayzoo
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Try these brands: Wockhardt Apotex Greenstone Pliva Teva Pfizer makes a 600mg And of course Sandoz http://www.drugs.com/imprints.php?drugname=azithromycin
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Independents tend to be more likely to make special orders than chains are. Just my past experience anyhoo.
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Anyone here have a Premium membership?
Mayzoo replied to aba's topic in PANS / PANDAS (Lyme included)
Actually, here is a link to start a free month trial and see if you like it: http://latitudes.org/membership-3/ -
Anyone here have a Premium membership?
Mayzoo replied to aba's topic in PANS / PANDAS (Lyme included)
If you PM Sheila, she may have a month free that she can offer you. This link may work for you to PM her: http://latitudes.org/forums/index.php?showuser=6720 -
If she goes back to constipation, here is yet another herbal product you can try. It has worked for us: http://smile.amazon.com/At-Last-Naturals-Innerclean-Tablets/dp/B000YBCIM8/ref=sr_1_2?s=hpc&ie=UTF8&qid=1448377066&sr=1-2&keywords=inner+clean
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Should be just fine. Didn't your daughter also have constipation?
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Can you help me read my test results, please?
Mayzoo replied to Wombat140's topic in PANS / PANDAS (Lyme included)
I just needed to pop on and say a super congrats on such a personal milestone for you. Regardless of the medical outcome of your tests, you should be very proud that you overcame such a difficult task!!!!! -
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vaccines mmr, varicella -- your experience
Mayzoo replied to pr40's topic in PANS / PANDAS (Lyme included)
Deb can you tell me how high were your daughters titers we had the titers done on our 5 year old they seemed high and after review my sons neuro immunologist is sending them to rheumotology and not sure why! Waiting for doctors to give us an explaination. I am not Deb obviously, but our kiddos varicella is sky high too. Varicella immune is considered >134. Our kiddos was 1113. Our immuno did not refer us to a rheumatologist, -
Guilty of not pushing for spinal tap?
Mayzoo replied to trintiybella's topic in PANS / PANDAS (Lyme included)
I can relate, sadly. My daughter was not in the right birth position and I and the doc knew it 30 days before I delivered. For 30 days I did exersizes to turn her, and when I went into labor, the staff never said anything about her not turning, so I assumed she turned. She did not, and the doc did not say anything about a c-section. Needless to say, she was born natural by forceps and sustained several serious birth traumas. If I knew then what I know now, I would have pushed for a c-section which is how babies in her position should have been delivered. I still beat myself up over this, but I heartily recommend you do not beat yourself up--yes I am a hypocrite . I doubt you knew she should have a spinal tap, just as I did not know my kiddo needed to be delivered by c-section. Hind sight is always 20/20. Blaming ourselves does not help our kiddos now. It just wears us down (speaking from experience). -
What blood tests are the first you'd try?
Mayzoo replied to Wombat140's topic in PANS / PANDAS (Lyme included)
Our PANDAS doc ran these on kiddos first visit: CBC Thyroid vaccine titers Complete Metabolic panel IGG, IGE, IGA, IGM levels Chlamydia pneumoniae MTHFR mutations (insurance did not pay for this) Mycoplasma CMV Vit D EBV Anti-Dnase HHV-6 Coxsackie A & B HSV I & II Celiac Homocysteine Magnesium Cerulplasmin Copper Zinc Ferritin Lactic acid Streptozyme Antistrptolysin o ab Ammonia, plasma Triiodothyronine Selenium OAT test (urine test) Neurotransmitter test (urine test) Porphyrin panel (urine test) -
what should I avoid giving Candida Cleanse (http://smile.amazon.com/gp/product/B0158VYYE8?psc=1&redirect=true&ref_=oh_aui_detailpage_o03_s00) with? Kiddo is on: Probiotic ABX (Biaxin, Augmentin) Anitfungal (diflucan) And a bunch of other stuff that should not affect this, but of those above, do I need to avoid giving Candida Cleanse with those?
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How do I disinfect retainers after strep?
Mayzoo replied to formedbrds's topic in PANS / PANDAS (Lyme included)
Ask your dentist/orthodontist for a prescription for Peridex. You can soak the retainer in that. -
Please help...need a doctor in Dallas/anywhere for PANDAS
Mayzoo replied to madhu's topic in PANS / PANDAS (Lyme included)
We see Dr. Rao in Plano. I will pm you some details, but we are overall happy with him. He is an immunologist who treats asthma, allergies, autism and is quite renowned in PANDAS. TEXAS *Dr. Sesgagiri Rao (Leading PANDAS Physician)Immunologist 972-964-7374 Plano, TX will treat more complicated cases involving PANDAS and Autism *Dr. Bruce Russell (Leading PANDAS Physician)Pediatrician 361-794-1930 Port Aransas, TX May not be accepting new patients. Will treat more complicated cases involving PANDAS and Autism Dr. Shreenath DoctorNeuropsychiatry and Clinical Pharmacology 713-524-3399 Houston, Texas http://pandasnetwork.org/researchandresources/find-help/usproviders/#TEXAS -
We see Dr. Rao in Plano. I will pm you some details, but we are overall happy with him. He is an immunologist who treats asthma, allergies, autism and is quite renowned in PANDAS. TEXAS *Dr. Sesgagiri Rao (Leading PANDAS Physician) Immunologist 972-964-7374 Plano, TX will treat more complicated cases involving PANDAS and Autism *Dr. Bruce Russell (Leading PANDAS Physician) Pediatrician 361-794-1930 Port Aransas, TX May not be accepting new patients. Will treat more complicated cases involving PANDAS and Autism Dr. Shreenath Doctor Neuropsychiatry and Clinical Pharmacology 713-524-3399 Houston, Texas http://pandasnetwork.org/researchandresources/find-help/usproviders/#TEXAS
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Just another option: My kiddo got a "tummy" right before she started her menstrual cycle. Now she gets a tummy right before a growth spurt.
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Do oral antibiotics enter the brain?
Mayzoo replied to Michel12's topic in PANS / PANDAS (Lyme included)
Some do, some do not. Here is a chart that may help: http://cmr.asm.org/content/23/4/858/T1.expansion -
Here is a small part of the e-mail I received back: "Repreeve is like an acupressure derivative. It does not contain chemicals (it does have adhesive on each patch- similar to a clear bandaid). It puts a tiny amount of pressure in six different locations in the body." "I might add that some of the benefits we hear quite often include feeling calmer, better sleep, less anxiousness and less upset stomach." "We have not tried the patches historically on children who have identified PANDAS as a source of their tics but we have worked very successfully with auto immune disorders in adults such as MS and Parkinson's and we have worked with Doctors to obtain objective results in some of those cases."
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Just for clarity, the TVP is a different product from what I linked. It is listed under the "Look for all our other great product's". I do not even know what TVP would be used for . The white flour is not organic, but it is non-gmo, unbleached, and not bromated. The multi grain bread flour, lentils, brown rice flour, and coconut flour are organic. I have not yet found an organic white flour that we can afford so we just don't use it often. Sadly, not everyone can afford to go 100% organic. It is just not feasible for most of us. We have to do the best we can within the budget we have.
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We are using these now: Flour: http://smile.amazon.com/gp/product/B00FJNVSOA?psc=1&redirect=true&ref_=od_aui_detailpages00 http://smile.amazon.com/gp/product/B0049YMC3Q?psc=1&redirect=true&ref_=oh_aui_search_detailpage http://smile.amazon.com/gp/product/B00BSZBEAG?psc=1&redirect=true&ref_=oh_aui_search_detailpage along with several Bob Red mill rice flour, and lentils (we grind into flour) These are non-gmo and organic. http://smile.amazon.com/Bobs-Red-Mill-Lentils-27-Ounce/dp/B004VLVK4O/ref=sr_1_2?rps=1&ie=UTF8&qid=1440028852&sr=8-2&keywords=bob+mill+lentils Noodles: http://smile.amazon.com/Hodgson-Mills-Veggie-Rotini-Pasta/dp/B001SAWAWM/ref=sr_1_1?s=grocery&ie=UTF8&qid=1440028622&sr=1-1&keywords=07151800026 Rice: http://smile.amazon.com/gp/product/B005763K40?psc=1&redirect=true&ref_=oh_aui_search_detailpage http://smile.amazon.com/gp/product/B000EH0RU2?psc=1&redirect=true&ref_=oh_aui_search_detailpage Most our veggies/mushrooms are now dehydrated: http://smile.amazon.com/Mother-Earth-Products-Vegetable-Quart/dp/B008BTHDQQ/ref=sr_1_2?rps=1&ie=UTF8&qid=1440028717&sr=8-2&keywords=dehydrated+veggie http://smile.amazon.com/Mother-Earth-Products-Broccoli-Quart/dp/B00846WORO/ref=sr_1_1?rps=1&ie=UTF8&qid=1440028739&sr=8-1&keywords=dehydrated+broccoli http://smile.amazon.com/Mother-Earth-Products-Peppers-Quart/dp/B007C7D2D6/ref=sr_1_1?rps=1&ie=UTF8&qid=1440028776&sr=8-1&keywords=dehydrated+bell+pepper We do not completely avoid gmo or pesticides this way, but they are reduced dramatically. White rice and processed, bleached, bromated flours are highly inflammatory, so that is where we started was trying to reduce inflammatory foods. And heck it all benefits PANDAS network when I buy it through Amazon, so a double benefit!
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We have never tried LDN or the capsule version of CBD. Kiddo tolerates the oil very well and it helps her virtually every time we use it. Sometimes it is not enough to completely reduce her anxiety, but it still helps. Prednisone also gets my kiddo back to almost 100%, but we only use a taper of it as a last resort when she stops eating. She is already immune comprimised (low IgG and IgA), so I try to stay away from it as much as possible.
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The CBD we use is from Hemp and I usually buy it from Amazon. We currently use the Cibdex brand. I will PM you with another brand we have tried.