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Posts posted by Mayzoo




    Really?? We usually use CVS for prescriptions but they did some looking (several months ago) and said they couldn't get dye-free azith tablets. I would think if one CVS could do it, then all could. Ugh. I think I'll bug them again. Do you happen to know the manufacturer of the tablets? Sandoz makes them, but that's the company that Rite Aid is telling me is backordered with no date for fulfillment.



    Try these brands:












    Pfizer makes a 600mg


    And of course Sandoz





  2. Yes, horrible constipation. I started Acyclovir and it's the only medication that she hasn't gotten violent with. She also started pooping with it. I am holding my breath that this continues. I am working on clostridia at the same time. Still real sick but not as psychotic and aggressive. Phew! So, I don't have to space the probiotics away from antiviral like I did with antibiotic. Thank you everyone for your help!!!


    If she goes back to constipation, here is yet another herbal product you can try. It has worked for us:



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    I agree with having titers drawn. We had our daughter's drawn and her varicella titers were through the roof and much higher than they would have been on a healthy child. She developed shingles on her ear two weeks to the day of receiving her varicella booster. We have a religious exemption in Texas and have those exemptions for both kids. I am hoping that we will continue to be able to keep that exemption with vaccines being a hot topic right now.

    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,

  5. 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).

  6. Our PANDAS doc ran these on kiddos first visit:


    vaccine titers
    Complete Metabolic panel
    IGG, IGE, IGA, IGM levels
    Chlamydia pneumoniae
    MTHFR mutations (insurance did not pay for this)
    Vit D
    Coxsackie A & B
    HSV I & II
    Lactic acid
    Antistrptolysin o ab
    Ammonia, plasma
    OAT test (urine test)
    Neurotransmitter test (urine test)
    Porphyrin panel (urine test)

  7. Hi Madhu and others please let me know if you did find right doctor to test and great pandas in Dallas or elsewhere in Texas, as I am in same desperate situation feeling blamed for and watching my dd suffer for past 3 yrs


    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.




    • *Dr. Sesgagiri Rao (Leading PANDAS Physician)



      Plano, TX

      will treat more complicated cases involving PANDAS and Autism

    • *Dr. Bruce Russell (Leading PANDAS Physician)



      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


      Houston, Texas


  8. 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.




    • *Dr. Sesgagiri Rao (Leading PANDAS Physician)
      Plano, TX
      will treat more complicated cases involving PANDAS and Autism
    • *Dr. Bruce Russell (Leading PANDAS Physician)
      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
      Houston, Texas


  9. 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."




    You are right about the flour. 100% natural means nothing other than it comes from the earth. The fact that it is desiccated with pesticides is obvious in the omission of the "organic" label. Don't be fooled into complacency. We vote for or against organic foods with our pocket books.


    Mother Earth products - dried vegetable soup:


    About the Product
    • Non GMO and gluten free
    • Can store up to 25 years in proper conditions
    • Snack out of the bag or use with meals or camping
    • Great source of essential vitamins and minerals; One full quart in plastic jar
    • Look for all our other great product's; Dried veggies, freeze dried fruits and veggies, true dehydrated beans and TVP

    Textured vegetable protein:




    Textured vegetable protein, TVP, is also known as isolated soy protein. It is a protein derived from soybeans, but the processing of soybeans into TVP includes chemical alterations. The makers of TVP first mix soybeans, with the oil removed, in an alkali solution, wash them in acid and then neutralize them in a different alkali bath. They then spray-dry the resulting soy curds using high temperatures that turn the curds into powder. More high temperature and pressure applied to the powder results in textured vegetable proteins that can be shaped into strips, chunks or granules for use in foods as meat substitutes. The processing adds flavor enhancers, artificial colorings, emulsifiers and thickening agents, including nitrosamine, which is a carcinogen -- a substance known or is suspected to cause cancer.


    Textured vegetable protein may not be harmful for everyone, but it contains a hidden ingredient that causes reactions in some people. Textured vegetable protein, has MSG, or monosodium glutamate, a common flavor enhancer. If you are MSG-intolerant, you may experience unpleasant reactions to eating foods with textured vegetable protein. People with soy allergens may also experience discomfort and problems from eating textured vegetable protein





    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.

  11. We are using these now:










    along with several Bob Red mill rice flour, and lentils (we grind into flour) These are non-gmo and organic.















    Most our veggies/mushrooms are now dehydrated:








    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!

  12. My DS15 tried CBD capsules this week for the first time. 25 mg capsules 4x a day. This was prescribed by his doc in addition to one LDN capsule at night. We were trying these to help taper him off the prednisone. When he started a prednisone taper 2.5 weeks ago he had amazing results and was almost symptom free within 24 hours. We had 10 blissful days symptom free. I got my child back! Once his dose was cut by 60% most of his symptoms came back. We increased his prednisone a little bit to stabilize him again which worked. But We then added the CBD and LDN to see if we could taper the predinsone more. In the last 5 days since starting the CBD and LDN he is much worse. He has been extremely tired and nauseous and light headed. His anxiety has been off the charts again (his worst PANDAS symptom). Today I cut the CBD and will not give him the LDN. The two do not seem to have helped at all. We are just trying to wait this out as his doctor is working with our insurance to get IVIG approved. I gave him another 5mg of prednisone today but I have seen no improvement but he does not seem as tired and no nausea or light headed.

    Has anyone had these results with CBD or LDN? I think I read if you have a CBS mutation that CBD may not be a good option because of the sulpha in it? I would love some feedback. Thanks!!


    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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