

emst
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emst last won the day on September 30 2015
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PANDAS and B12 Deficiency? - Help Please! (Long)
emst replied to heatherellen's topic in PANS / PANDAS (Lyme included)
I'll use BOLD to answer your questions What do you guys think is going on with my daughter (and me) ? Could we have MTHFR or SIBO? PEOPLE CAN HAVE BOTH Do you think my daughter is experiencing permanent damage? How can I tell if so? PERMANENT DAMAGE DOESN'T SEEM LIKELY - ID THINK SHE IS STRUGGLING IF SHE IS MISSING NUTRIENTS Could she have PANDAS AND a B12 deficiency? YES Could it by Lyme or Bartonella or Candida? YES Adrenal fatigue? YES More than one of the above?! YES How can anyone diagnose us with a B12 deficiency if our B12 levels are normal and our Homocysteine levels are normal? NORMAL IS A SUBJECTIVE TERM SOMETIMES ESP W OUR KIDS __ AND IF YOUR DRS ARE NOT COOPERATIVE WHERE U LIVE YOU HAVE TO ASK WHY __ FOR EXAMPLE WHERE I LIVE WHEN OUR KIDS WERE DIAGNOSED * YEARS AGO NO DOCTOR IN NY W? WORK W PANDAS BUT OUR DR IN CT WOULD -- ASK A LOCAL PANDAS GROUP (LOCAL TO WHERE U LIVE) THEY CAN DIRECT U TO DOCTORS AS CAN GROUPS LIKE TACA AND NAA Methocolbumun form of B12 is what most people do -- IMO best to do it w a doctor some kids react really well as 2 of mine did but our other has different genetics and she responds terribly to b12 -if you try it on your own try tiny bits/drops and go slowly YOU NEED HELP -- HOPE OTHERS REACH OUT and hope you find a good doctor ASAP Best to you, Erin -
dasu reacted to a post in a topic: Comprehensive strep swab
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ears
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How are you treating? Might be time to switch it up pt increase the dose if you are on meds or implement rotation of herbs if you are using them.
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Sorry, just feel like a rant.....
emst replied to Lydiasmum's topic in PANS / PANDAS (Lyme included)
Hey -- so sorry. Been there x3 kids it stinks, worse. If I had to do it again i would ask people to help though I suppose you know that its hard to ask, and it gets harder the longer it goes. But there are more good people int the world then not and most are smart and kind and can take direction. Church groups, school groups, scouts - friends and neighbors. Be very specific so they cant fail Give it a shot. Sending Prayers your way, Erin -
I have heard of kids w Perianal Strep though the Dr who told me about it said that most doctors do not check for it. Only obstetricians check for it he said. It sounds like that's what is going on -- also thinking it could be yeast though time of year strep seems more obvious.
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Hi Jennopow It sounds like pandas flare. For yeast we do candex or candidase enzymes or both usually work up to 3 caps a day.empty stomach lots of water How is her diet? Unfortumately might be time to tighten up the diet consider GAPS or SCD, good videos on AUTISM ARI http://ariconference.com/
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emst reacted to a post in a topic: Homebound?
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Increased flare when starting ABX?
emst replied to jennapow's topic in PANS / PANDAS (Lyme included)
Great advice above. Also consider the full moon is often a culprit or at least part of the problem in the sense that a weakened immune system leaves kids open to infection and parasites -
emst reacted to a post in a topic: Increased flare when starting ABX?
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Bacteria in the nasal passages or sinuses, maybe strep -- need to treat
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LNN reacted to a post in a topic: Recommend doctor that will treat more naturally?
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Recommend doctor that will treat more naturally?
emst replied to TracyRee's topic in PANS / PANDAS (Lyme included)
Nancy O'Hara and Gail Szakacs http://ihealthnow.org/first appointment is in person, need 1 in person appt per year other appointments can be via phone. They do not accept insurance. Great, great reputations. They are among the most experienced and qualified doctors in this field. May take some time to get an a first appointment. -
Been there! We are trialing Clonidine w good results.
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I think most doctors would have you test the individual ingredients. This product in particular has had a few version changes example removing shellfish -- if it were me I would see what the reactions were to the individual elements acknowledging that the elements were put together to wok synergistically -- it may take time, prob worth it though.
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I need help finding a Dr in Los Angeles area
emst replied to KMom's topic in PANS / PANDAS (Lyme included)
Definitly look at TACA doctors list for SoCal https://www.tacanow.org/family-resources/medical/ http://www.generationrescue.org/recovery/find-a-physician/ -
Our daughter was 11 at the time this came up in out house and was interested in the topic when it first came up though she was very secretive/independent about it which surprised me but she is the type who likes to be prepared so I should not have been surprised. She asked me to buy her a long list of products she thought she needed so I did that and just left a bag on her bed --included both tampons and pads several shapes and sizes though to date she has not tried a tampon she still has them in her drawer.. She had had the American Girl Book 'The Body Book for Girls' since she was very young and she told me that was all the info she needed. True enough - I left her to herself on this.
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We have used Nutramedix Samento, Babuna, Banderol each on different occasions, Nutramedix has interesting links esp. suggestions from Dr. Cowden that you might find interesting. Hope it helps.
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emst reacted to a post in a topic: Lyme and Ehrlichiosis - Neuropsychiatric presentation only?
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anyone had PANS from hookworm?
emst replied to wisdom_seeker's topic in PANS / PANDAS (Lyme included)
Maybe change helminths for a bit? We use biome restoration for the past year and 1/2 its helpful for me and 2 of our kids. Our benefits w this brand of helminths mainly gut and calming.