Mayzoo
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Posts posted by Mayzoo
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Okay, I found this rather funny....maybe just my odd sense of humor LOL. A decal I just cannot imagine anyone actually "needing".
Interleukin 6 (il-6) Molecule Wall Decal - 24 Inches H x 24 Inches W - Peel and Stick Removable Graphic
Who just cannot live without a molecular wall decal of an interleukin 6 molecule? Two foot by two foot large and only $33.00. AND, the die hard interleukin 6 molecule fans can get the 4 foot by 4 foot sticker for only $82.00
I guess I gotta find a little bit of humor wherever it arises
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Also try typing into google each med + "methyl donor" such as:
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Try these links: (more found here: google "list of methyl donors")
https://www.facebook.com/mthfralliance1/posts/530147490434986
https://autoimmunethyroid.wordpress.com/2006/04/16/list-of-methyl-donors/
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I wish I'd been smarter about vaccines when DS was a baby.
If it is any consolation, I was pretty conservative, and I still have a kiddo with autism and PANDAS and a few pretty severe birth trauma related symptoms.
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I know you said no Prevnar, but did you have any testing regarding ability to respond to Polysaccharides?
I'm sure you know this, but I mean the S pneumonia titers?
M Pneumonia tested, S pneumonia no.
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Oh my goodness mayzoo, that is unbelievable!
They did not want to tell me what they needed the urine sample for, but when she had difficulty using the restroom, they finally broke down and asked me if she had started her cycle yet and if I was certain there was no chance she could be pregnant.
*sigh* sad to say now days 11 year olds are in fact rarely pregnant, but still some are
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mayzoo
I know this is probably being overly simplistic, but is it generally thought that your child has hyper adaptive response and hypo innate?
I have never pinned her immuno down on it, but that sounds right based on her responses to bacteria and viruses vs her response to immunizations.
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mayzoo and dasu,
Are you saying that your kids didn't have the birth dose or didn't have the series at all? The newer combo shots are enough to make your head spin.
more links....
http://www.vaccines.net/vaccine-induced-immune-overload.pdf
Review of Vaccine Induced Immune Overload and the Resulting Epidemics of
Type 1 Diabetes and Metabolic Syndrome, Emphasis on Explaining the Recent
Accelerations in the Risk of Prediabetes and other Immune Mediated Diseases
http://www.vaccines.net/toppage1.htm
Congress Told Hepatitis B Vaccine Linked to Rise in Diabetes
New study strongly suggests hepatitis B vaccination in France sparked a wave of new cases of MS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4266455/
Evolution of multiple sclerosis in France since the beginning of hepatitis B vaccination
http://www.ncbi.nlm.nih.gov/pubmed/22235045/
Lupus. 2012 Feb;21(2):146-52. doi: 10.1177/0961203311429318.
Autoimmunity following hepatitis B vaccine as part of the spectrum of 'Autoimmune (Auto-inflammatory) Syndrome induced by Adjuvants' (ASIA): analysis of 93 cases.
Attacking Ourselves: Top Doctors Reveal Vaccines Turn Our Immune System Against Us
Unless the hospital gave it against my wishes, my child has not had any hep b shots at all. Her Hep B surface ag is negative is all I know. I worked in pharmacy for 20 + years at that point, and there was no reproductive data on female children given this vaccine at that delicate age, so I told them absolutely no in no uncertain terms
. I also used a modified vac schedule. Kiddo only received the vaccines I received as a child (plus 1). She received:
Polio
DTAP
HIB
MMR (only one--she reacted horribly)
Varicella (Only one)
None of these ever:
Prevnar
Hep B
Hep A
Gardasil
Rotovirus
Pneumococcal
Influenza
I should add that her titers for all the vaccines she received are about 5-10 times higher than the level they should be, so much so, her immunologist treated her for over a year to reduce her rubella titers (> 9 positive and hers was 147)and is currently treating her to reduce her varicella titer (>165 positive and hers is 1113) .
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Maalox coats better in my opinion. She needs to sip lots of water to try to flush the area as well.
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http://rheumatology.oxfordjournals.org/content/38/10/978.full
I wonder if the hep b vaccine is setting the stage for more kids to develop PANDAS? I know my PANDAS dd even got an "extra" hep b vaccine as a baby (due to switching medical groups).
note: The hep B vaccine is on the CDC schedule in the US starting at birth...which is crazy b/c it's a sexually transmitted disease.
Yeah, by the time the kids are old enough to be sexually active, the immunity imputed by the vaccine would have waned without a booster.
BTW, they do pregnancy tests on 11 year olds in my area. They "needed" this test prior to our T & A.
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Just an FYI, my kiddo has not had any hep b vaccines (refused all vaccines in the hospital) in case that helps with pieces to the puzzle. Unless of course they vaccinated in the hospital against my express wishes.
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Anything that allows bacteria to enter the blood stream can cause a flare. Yes, teeth coming in can cause a flare. It does not for everyone, but it does for some. Have you tested the surface of her teeth (not just throat) for strep? I was amazed to find strep on kiddos and my teeth.
Actually, this is a reminder I need to retest our teeth
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I have asked our Texas PANDAS specialist what hospital to use, and so far, he does not know of one that is PANDAS friendly. There could be one, he just does not know of it yet.
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Our dog is almost the same weight as kiddo and he is a blessing. Kiddo has never raged at any living thing (thankfully).
Our dog has the temperament of a service dog and I have on more than one occasion considered schooling him for such, but the need is not great enough. He gravitates towards her and she swears he makes her feel at least some better no matter how bad she is feeling. If she gets "the upsets" and he is outside, she usually asks for him stating he makes her feel better. Then when he comes in, he sleeps right at her feet 95% of the time. Whether she is feeling bad or not, he wants to stay in her room while she unwinds for bed, and while she goes to sleep (then I sneak him out so he does wake her in the middle of the night).
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I would say treat if your titers are positive and you see unresolved, otherwise unexplained symptoms in your child (and likely no harm will be caused to you or hubby by treating). If you treat and the symptoms lessen, then you should continue to treat until you both are in the negatives. If you treat and your titers drop, but your child's symptoms remain unresolved, then you need to keep looking for the unfound cause.
I know when I become ill, even mildly, my child reacts usually prior to my having any symptoms.
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My daughter is complicated LOL. She also has autism and was speech delayed prior to PANDAS dx. Since PANDAS, she has no speech or only whispers. Should I take the survey, or would that mess up the stats?
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I am sure this has been mentioned, but I have not seen it yet, so I will mention it again. I shop at amazon a lot. If you go to "amazon smile" (link below) and shop, then .5% of your purchases goes to the charity of your choice (PANDAS network.org is a choice if you type in PANDAS and search it.) Then just make sure your bookmark is to the amazon smile site to make sure your purchases count (upper left hand corner of mine now says "Amazon Smile Prime".
All your prices stay the same and all the services stay the same.
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Thanks for all responses. We just started the abx about 1.5 hours ago, and so far, so good
(trying not to sit and stare at her, waiting for something to happen - lol). mayzoo, she is on clindamycin and rifampin. The insert for the drugs lists the adverse reactions you mention. The problem in my head, is that these same things (diarrhea, g/i stuff, etc.) are things I often see mentioned as a herx reaction. So, is it possible that the "adverse reaction", as the standard medical community sees it, is actually a herx reaction, from a different angle?
You mention charcoal -- wouldn't that carry the danger of absorbing some of the meds? Is there a specific time after dosing that you administer the charcoal?
Diarrhea as a herx, hmmmm, I am not sure about that, but of course my experience is limited.
Mild diarrhea (soft stools 1-2 times a day) is likely a short term intolerance. Violent, completely watery, excessive (more than 2-3 times a day), OR bloody diarrhea are an adverse reaction that absolutely needs to be reported to your doctor immediately. The Black Box warning for clindamycin is:
"Clostridium difficile associated diarrhea (CDAD) has been reported with use of nearly all antibacterial agents, including clindamycin and may range in severity from mild diarrhea to fatal colitis. Treatment with antibacterial agents alters the normal flora of the colon leading to overgrowth of C.difficile."
http://www.drugs.com/pro/clindamycin-palmitate-hydrochloride-granules.html
Make sure you drink enough water/gaterade and that you are taking appropriate, and ample probiotcs (2 hours before or 2 hours after abx). Adding kefir, fermented vegetables, yogurt, prebiotics, etc is a very good idea to help lessen the likelihood of colitis or GI disturbances.
Charcoal needs to be taken 2 hours before or 2 hours after anything you want to absorb while in the stomach (herbs, any meds, etc..).
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aba - we were told by Dr. Murphy from USF, and I think you'll find it on the board here many times over, not to give omega 6's or 9's to PANS children - only the Omega 3's.
Our Pandas specialist said if she tolerated the 6's and 9's to go ahead and give them.
When things were going well, she tolerated all three fine. Then we had another illness, at the same time I had to reorder, so I just went with the 3's. I do not think the 6's and 9's negatively affect my kiddo, though I know others say it does affect theirs.
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Topical magnesium is ionic magnesium mixed with distilled water and yes it is great for detox, and topically does not interfere with abx absorption . Ionic magnesium is supposedly one of the best absorbed magnesiums out there. My kiddo is taking ionic magnesium put into a "000" capsule orally (sensory issues make topical difficult) and it is working very well for her for many issues. I am taking it for muscle tension and headaches with good results.
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From a pharmacological stand point, an allergic reaction is:
A mast cell is injured or irritated, it releases a variety of strong chemicals, including histamine, into the tissues and blood that promote allergic reactions. These chemicals are very irritating and cause itching, swelling, and fluid leaking from nearby cells. These allergic chemicals can cause muscle spasm and can lead to lung airway and throat tightening as is found in asthma and loss of voice.
http://www.emedicinehealth.com/script/main/art.asp?articlekey=2196
Also a rash/hives are common allergic reactions but those need not be present for the itching to be an allergic reaction.
Generally speaking, any other reaction is an not allergic reaction, but something else such as an intolerance to the abx (nausea, headaches, vomiting, mild diarrhea etc). Sometimes intolerances go away after a week or so, but contact your doc so they are aware of the issue. If you can tolerate the reaction, your doc may request you try to see if it goes away.
Also you may experience an adverse reaction which would vary depending on the antibiotic. Swelling/pain in the joints is not uncommon for fluoroquinolones. Sometimes a person may experience tremors as an adverse reaction. Severe diarrhea/gut pains with Clindamycin are also not uncommon. Each medication has a specific set of adverse reactions. Usually each abx will come with a paper handout that list most adverse reactions. Contact the doc immediately if you experience any listed adverse reactions. True adverse reactions are somewhat rare, but can lead to long term health complications if not handled immediately. You can pm me or ask on open forum if you are unclear about adverse reactions for a specific abx.
Or, the reaction may be a herxheimer reaction which for our kids usually includes worsening of existing symptoms directly related to the condition being treated ie: increased ocd, anxiety, tics, raging, etc..... Hexheimer reactions also usually resolve with time, but may require adjustments to the meds to lessen the reaction making the symptoms more tolerable.
No improvement at all after 2-3 weeks is a good reason to visit the idea that the abx may not be working for you. The doc may want to wait a bit longer however, as some kids take a bit longer to respond.
My kiddo started zovirax (anti-viral) on the 3rd of February and we are just now getting back to some "good days". Of course, things were a bit rough before we started anyway, then the herx took a while to settle down. I treated the symptoms of the herx (mostly items to reduce anxiety) and gave charcoal, and magnesium, for detox rather than reduce her dose since the symptoms were not intolerable for either of us.
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A short synopsis about this stuff:
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Abstract BackgroundInfection is a serious, costly, and common complication of surgery and constitutes the principal cause of late death in patients undergoing surgery. The objective of this study was to clarify the mechanisms by which active hexose correlated compound (AHCC) increases survival in a murine model of intramuscular infection.
MethodsFood-deprived mice receiving either AHCC or excipient were infected with bacteria. Kinetics of bacterial load, white blood cell counts, cytokine levels, and antibody levels were compared between groups.
ResultsAHCC-treated mice had reduced bacterial load at day 5 and cleared bacteria entirely at day 6. Levels of interleukin-12, tumor necrosis factor-α, and interleukin-6 peaked earlier in this group (day 3) compared with controls (day 5). Increased percentages of peripheral lymphocytes and monocytes and decreased numbers of polymorphonuclear cells were detected in the AHCC group.
ConclusionsAHCC appears to induce an early activation of the immune response, leading to an effective clearance of bacteria and rapid recovery."
http://www.americanjournalofsurgery.com/article/S0002-9610%2808%2900045-7/abstract?cc=y
Human Study of safety:
https://www.jstage.jst.go.jp/article/jnsv/53/6/53_6_536/_pdf
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I read about this on another board for another condition, but it seems relevant here as well. Anyone tried it, trying it, heard good or bad about it???
Naturally, it is expensive.
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A surface glance shows no interaction between clindamycin, rifampin and magnesium. Here is the web page in case you wish to see what does interact with those: http://www.drugs.com/interactions-check.php?drug_list=690-0,1516-0,2012-0
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OT: Wall decals--who would have thought? (kinda funny)
in PANS / PANDAS (Lyme included)
Posted · Edited by mayzoo
Yes it is kinda pretty, and could be passed off almost as a bunch of grapes LOL. I just redid my kitchen in vinyards and wine bottles motif, but just did not find this decal soon enough--drat
!!!!!
I was looking for "immune acute" (a supplement) and it popped up.