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Fixit

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Everything posted by Fixit

  1. this family will need support! http://www.cnn.com/2013/05/28/justice/oregon-teen-bomb-plot/index.html?hpt=hp_t2
  2. butyrate a different action of sulfur...what is your take. http://www.badgut.org/information-centre/the-role-of-sulpher-in-uc-1.html Other research supporting these finding has shown that increasing reduced-sulphur compounds causes a reversibleinhibition of butyrate oxidation. Butyrate acid, a shot chain fatty acid, is also a product of colon fermentation, but unlike hydrogen sulphide, is vital in providing up to 70% of the energy metabolism required by the cells lining the large bowel (the small bowel uses different energy sources). Studies indicate that butyrate oxidation is impaired in the biopsies of cells lining the colon of ulcerative colitis patients. There have been a number of clinical trials using topical short chain fatty acids, especially butyrate, in distal ulcerative colitis in order to overcome this deficiency of butyrate in the colon. The data in this area has shown some promise and supports the ideas of impaired short chain fatty acids metabolism by the presence of high levels of sulphur amino acids. http://www.drugs.com/ppa/mesalamine-5-aminosalicylic-acid-5-asa.html any thoughts on this...Citrulline...but says it's found in meat? http://blissreturned.wordpress.com/2012/04/09/citrulline-the-amino-acid-use-for-the-detoxification-of-ammonia-a-byproduct-of-protein-breakdown-and-in-the-treatment-of-fatigue/
  3. Any more info on this topic? i am hearing about low dose also. I have also heard of another plan that would be HD first, followed by low dose about 3-4 weeks later...and maybe a few more low doses to follow. ANyone do any of these other types of protocals being followed? Haylay, did you do the ld as Dr L suggested and how is it going?
  4. Yes. You are right. It is very difficult to be patient. I was not born with patience. FIXIT now...that's what i do. My entire family are take action people. Just do it, get it done. I wonder if that will reflect in my 23andme. I did all 5 of us, since all 3boys have pandas as well as hubby. So like you, i figured if i am researching, i might as well do all, instead of back tracking on the research. I guess the question now is...how do you know what to start first?
  5. Hi LLm, i am glad for you that you have figured some things out. I also appreciate your posting your information as it may help alot of us. Especially those of us who are older and have multiple panda children. NOt that we still don't have to research, but it gives a great starting point. Also i find i am getting more confused the more i work on this SOT. Can i ask you to clarify something? Are you saying if your COMT is fine, you break down dopamine well?? But if you have a mutation that you don't break it down?? And that that would lead to Vit D possiblely increaseing dopamaine if you have the COMT mutation and a VDR gene Tagged? Thanks for clarifying. I am trying to figure you what you originally said and what your correction is.
  6. How do you mean, or how did you firgure out that your dd was allergice to reveratrol?
  7. AMEN sister! I had ds at such a good point. Do to, at least in part, to a family emergency, everything went off track and so did ds. I would think that getting back to that good point would be quicker than the last time, but that does not seem to be the case. Regarding C..look into oxalates..i think. You may be at point where it is creating an amonia type thing in the body?? idk
  8. OOhhh CANNAAAADA...healthcare..here we come. Yes that care might be great if you have a broken bone, but forget any mistery diagnosis or finding knew causes to problems..they will have to kill you first to find out what went wrong! Forget anything as wonderful as what has happened here at ACN, in the last 2-3yrs for PANDAS/pans and lymes ever happening again. Not for any new correlations that parents might put together.
  9. Great thread. I am sorry you are being forced to take one, for the good of all! In GA..when ds was entering middle, he failed his booster required shots...i did not want to got there and he was still is this episode. Here, at least, at that time, you did not need a reliougys exempt. So ds13, ds10 are full up to 5yr schedule...rediculous...is it like 36 shots or elements introduced by one year old...who's immune system could handle that..?!?!?! ds5 is only current to his 2 or 3 yrs...he was not growing and a little off, as suggested by preK teachers..i am sure he would have ended up autistic. I'll MARCH.. if someone else will organize.... But i now thinking and some indications that DS13 may have heavy metal problems...gese wonder from where that stemmed??? SS...i thought i was Catholic Lite/other(you name it..it could be true)...but i believe I'm pantheist too! 911..i like your release form directives ANd SOT still lives here!
  10. I suspect that your dd's results are right. My understanding is that high D1 was seen on PANDAS kids (Cunnigham) and was associated with OCD. High anti-lysogangliosides were associated with pandas tics (don't quote me though). Don't know how immune def would affect results--way over my head, but good question! Just to keep everyone on their toes DS; cam 160 only D1 elvated 4000..range 500-2000 TICCER...all day all night...i guess some of the tics could be compulsios..but idk.. only ocd that i have finally put a finger on is Triatellanmia..at the start of each allergy season, Starting in february for about a month and then again about august.. Love to hear thoughts on this
  11. rowing i just wanted to reply to this as my ds12(13 tomorrow)..had the exact thing happen to him. i too thought i would try gse for yeast..a couple years ago... he took 1! drop and 10minutes later all h(*&&^() broke loose. For us they are tics went crazy and the screeching went on for weeks until we treated with vaco....eyes dialted... don't know if it yeast, but gse is very high in phenols. who knows with these kids..i have not use gse again.... it is one of those things that i wish another parent would say... "yes that happend to us, but we continued and in x days/weeks we got to the other side!" i don't have the strength to hold on through that.
  12. I have a question for all who posted. I am assuming you saw the video on Dr oz reguarding the 3yr old child with joint pian. i thought i saw the link posted on ACN and some other info. the child was put on gf/cf/nighshade free diet..and in 6 weeks was better but took the full six weeks. My ds has had joint pain when on specific abx ie.augxr. when given an anit fungal at same time the joint pain does not come on. ergo..fungus in the joints? leak/ier gut allowing food particles to create other bacteria in the joints? Are all of you suggesting...that ra symptoms are all(most) from viral/infection/lymes? not saying you are wrong. or do any of you think you have leaky gut and that is the problem for jiont issues? or do you think if you clear the infection, you will NOT have to be concerned about food issues? if you have not seen the 3yr old twin(the other twin is fine..here comes epigentics or other into play)with painful ar i will look for it and post. I would really like to hear your thoughts Sorry ..it was down below http://www.latitudes.org/forums/index.php?showtopic=19752
  13. Anyone have anything to report on this product? Good Bad? glutimine sounds great...but if leaky gut..wouldn't that possibly leave it in the form of glutimate if not absorbed properly and not glutithione?
  14. This is a very timely thread. I have been pondering this of late. Here are ds cunningham. Remember first draw ds was on added taurine bid for 3 months..with other aminos to balance. His tics were minimal/less but still there..and that is why I say if it is out range..and you have pandas symptoms you are still in episode Ds was 9 ¾. Dr C..whom I still respect..even though I don’t think there should be a limit on what the Cam reads, said not likely pandas I told dr L I canceled my original appointment as I thought she would not believe it was pandas…due to the low Cam and ds is mostly just ticcer...yes dialated eyes, and dysgraphia(but not worth mentioning)…She said yes she would.and also noted his D1 was still quite elevated. D2 also noted as elevated by she and Dr. C. He is all ticcer, all the time…so it doesn’t fit with some of the other things mentioned here regarding d1,d2, limbic sytems etc…. Cam 105…control 93 Anti-lysogangiosde Paitent 160 Pos control >1280 Neg control 80 Normal range 80-320 Normal mean 147 Anti tubulin Patient 500 Pos control 16000 Negative 250 Normal range 250-1000 Normal mean 609 Anti dopamine 1 Patient 2000 Pos control 8000 Neg control 1000 Normal range 500-2000 Normal mean 1056 Anti dopamine 2 Patient 8000 Pos control 16000 Neg control 2000 Normal range 2000-16000 Normal mean 6000 2nd draw ds was 10 in full flare… Note…all the numbers are exactly the same…but the D1 is even higher. Cam 160 normal 87 Anti-lysogangiosde Paitent 160 Pos control >1280 Neg control 80 Normal range 80-320 Normal mean 147 Anti tubulin Patient 500 Pos control 16000 Negative 250 Normal range 250-1000 Normal mean 609 Anti dopamine 1 Patient 4000 Pos control 8000 Neg control 1000 Normal range 500-2000 Normal mean 1056 Anti dopamine 2 Patient 8000 Pos control 16000 Neg control 2000 Normal range 2000-16000 Normal mean 6000 So one dr I had visited..who was an actual Dr. who did some sort of muscle testing. (not ART) who suggested that ds had LOW dopamine. I asked if he was sureand he said yes. Mind you I already had 2 cunningham tests in front of me. That’s when I wondered about uptake. The reason I am also posting this is that I am possibly considering a program that is suggesting that I give ds iv’s of Phosphatidylcholine, Glutathione (a powerful antioxidant) and Leukovorin. (folinic acid)and phenybutyrate(is this just a different form of butyrate? . The last item I see is used/experitmented with in parkinsons. I am not sure I want ds to be the guinea pig here. My question would be..is the dopamine we are measuring with cunningham..lack of reuptake..or excess. Would parkinsons and TS respond the same to this treatment method.? Is parkinsons lack of reuptake or lack of dopamine completely. http://www.ncbi.nlm.nih.gov/pubmed/20201064 http://www.markpine.us/?p=3371 I think this one was posted before http://www.ncbi.nlm.nih.gov/pubmed/22353286 http://carcin.oxfordjournals.org/content/26/6/1064.full Does anyone have thoughts or experiences on any of the properties I listed? Not trying to hijack thread….i was going to start a new one…but this seems like it ties in??? Ds was doing great…and all heck has broken loose. I have had to put my attentions elsewhere do to some other emergencies here. My writing is extra wonky because of stress and some fluid in my middle ear..making me feel like a weeble wable, also makes me feel slightly sleepy and REALLy Cant focus on what I type or speak…moving my eyes makes me feel like I am falling, but I need to keep taking care of the house of falling cards. Thanks for any thoughts.
  15. Been busy do to family emergencies..trying to keep up. Ds was doing fanaminal..but took a nose dive..possibly do to lack of my watching diet or allergy shot..or both Life is *^*^% here! During his best week..he was getting 4-5 frozen cherries cut into his steel cut, organic, nonGMO oatmeal every morning.. Cherries are a naturl anti inflammitory...but high in salicilates..frozen foods typically have fewer salicylates. It's finding that balance.
  16. Here comes a probable unpopular opinion... Yes..low but not normal, IMO can still indicate pandas. i don't understand how saying that out of range but low is not pandas. how from 5-10 indicates X 10-15 indicates Y and 15-20 indicates Z... out of range is out of range... indicating inflamation,infection,autoimunity,or a disconnect of some sort.. how can you say what condition it is based on how high it is??? i would hate to leave a child out based on this odd way of reading one particular number. prior to first reading...ds was taking alot of taurine. ds first read...was 106..epressing pandas in form of tics...not is full flare...norm or mean was 85 ds second read ..around 168 ...alot of tics in full flare...
  17. My brain cannot comprehend any of this. Are you saying that if you treat the allergies before you get pandas, you might avoid a pandas kid or re-event...because that is what i am saying. My thought is that since i started allergy shots a year plus into this 4yr episode...ds might be flaring more per each injection. now that they are 4 weeks apart, i am trying to see if the regressions are do to the shots...then we get really good...then the next shot...and poo hits the fan again... I am not ready to say that is what is happening...but i think we will need a couple more shots to tell. However...if this is true...the baseline, if i can call it that..was fantastic just before this last shot..but is 5 days or so enough to call a baseline? 911...i am not sure what you are talking about in regards to dad with autistic kid...sounds familiar though.. also did you see my pm?
  18. I wonder the same thing for you. the pandas for my ds' stems from my dh side. 3 brothers...oldest had t/a and allergy shots....healthiest, claims 1 time ocd period that remitted....he has been off and on allergy shots over the course of his life. middle (dh) a preemy...constant strep until 2 yrs ago...he tics. youngest brother,constant impitego(sp) ......has severe psorisis, more adhd-ish than other brothers, takes ramikade(sp) for skin condition...(i told him to get tonsils out and check for strep,but i am not a doc so he won't listen to me!!!!!!) I regret not pushing to getting the t/a for ds12 when he was 5, (we finally did it about a year into this 4yr episode),and not starting allergy shots at that time aslo. My concern at this point is that i have ds12 on allergy shots for 2-2 1/2 years. started while ds was in episode...i just wonder if it is too late a start and these allergy shots that may have saved him if used early, are the things that make us regress. "i may" have found a cycle...a flare 24-48 hours after shots...not getting better till the week prior to next shot however...i wonder if his baseline, "if" the allergy shots are the culprit, is better each month....still difficult to tell or pinpiont. We shall see. It is difficult to just say stop...2 years in ...going weekly...and having a obviously vast improvement in his "allergy" symptoms. The question is, are the shots causing a pandas flare. Do i choose to loose ground on allergis, not to have the flare, but then the allergies will increase pandas anyway! My son is the great experiment for allergy shots for PANDAS. Has any parent had their pandas child on allergy shots, while in episode, and seen recovery without halting shots??? ANYONE?????
  19. I wonder the same thing for you. the pandas for my ds' stems from my dh side. 3 brothers...oldest had t/a and allergy shots....healthiest, claims 1 time ocd period that remitted....he has been off and on allergy shots over the course of his life. middle (dh) a preemy...constant strep until 2 yrs ago...he tics. youngest brother,constant impitego(sp) ......has severe psorisis, more adhd-ish than other brothers, takes ramikade(sp) for skin condition...(i told him to get tonsils out and check for strep,but i am not a doc so he won't listen to me!!!!!!) I regret not pushing to getting the t/a for ds12 when he was 5, (we finally did it about a year into this 4yr episode),and not starting allergy shots at that time aslo.
  20. can i ask what your thoughts are on the phosphatidylcholine portion of the push?
  21. Hi there, Mom of 3 ticcers, 2 in remission, one of those 2 looked like heading to possible autism(cleared gut of yeast and is fine), oldest ds12 still fighting to get to 100%. Yes, i think ocd could pop up. with this ongoing episode almost 4yrs, we have had, tricatelanmais(sp), complusions, and a recently a desire to leave a room the same way he comes in. I try not to feed it nor ignore it. I brushed it off when he "confessed"it. And a couple of times i noticed he turned around to leave room the same way, i acted as if to do some other thing to redirect him out the other direction with a chore or something. And this is not daily, it's occasionally when he has time to think. TICS are the main/only problem. AND adrenal fatigue(dialated eyes, like a cartoon character)(could be inflamation as well?) Except last summer..yes for us the summers are better. Also re Anatabloc who prescribed this for you? was it for pandas, inflamation in general, inflamation in the brain, or for thyroid? Is this supposed to stop thyroid conditions???????!!!!!!!! DS12 going on13 has a thydoid condition that i believe ties into his pandas on some level. he is on levoxyl, and we using other supplements. ARe you saying he is tic free once you add antabloc? how long do you have to use it for? is it something that you take off and on? or should you maintain a steady dose? WEre you warned of any known side effects? Are you in a clinical trial? Thanks for your great update and information!
  22. PLEASE...TO ALL PARENTS GIVING STEROIDS..PER MY EXPERIENCE WITH TICS...AND other conditions that look like early indications that could lead to autism. You need to give an anti-fungal or things will get worse! IMO steroids make more yeast than ABX!!!! You do not want it to become systemic/chronic. If you give an anti-fungal during steroid..you may or may not see a slight increase at first, but w/i a week things start to calm. You may see increase agitation with steroids. You will very likely see an increase in tics with increased yeast. JMHO and humble experience!
  23. YAY! Ds12 had if first fever in about 5-7 maybe 9 years, just after thanksgiving 102.8-9!!!!!! i monitored it very carefully...that was my limit. i was not going to let it go to 103..i felt comfortable staying just under that number. i was giving cold compress on neck, forhead, and feet. once it got to the above number, i had him get in a cool bath....i didn't want to shock him. his fever was 2 days and the second day stayed at 100-101. No tylenol, or ibuprofen. We did get a little bump up in his condition(in a good way)from the fever. Maybe in a few days you will see a little bump up too!!!!!!
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