Fixit
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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?
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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?
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Avoid speculating on what your kids mutations might be and supplementing based on your hunch. I did this and was wrong on a few judgment calls. I ended up supplementing both kids with tryptophan and tyrosine assuming they had shortages (based on anxiety and depression). Turns out this was fine for DD but wrong for DS. I spent months blaming adverse symptoms on a lyme or Pandas flare when at least in large part, it was likely due to my flooding the carburetor. After many years of treatment for infections, I'm now thinking our residual issues are due to methylation and not infection. I know it stinks to have to wait so long for 23andMe results, but the more I use the data, the more I'm grateful for the custom info it's given me.
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?
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Edit to my first post - I got the genes reversed. COMT does the dopamine breakdown and MAO-A does the serotonin breakdown. I originally wrote that the wring way. So my DS, who has an MAO-A mutation, would not do well on an SSRI. My daughter, whose MAO-A is fine, would do well on an SSRI. Sorry for any confusion. Too many letters jumbled in my head at the moment and haven't fully digested everything.
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.
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DD8, 53 lbs, takes 100mg once a day in the morning. Initially, she felt much better on it. Lately, fatigue has returned (have used it for 2 months). But I believe her issues are different than yours, so I wouldn't draw any conclusions from our experience.
As for other antioxidants, we use
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- milk thistle (silymarin) 300mg once a day to support the liver
- occasional resveratrol for DS/lyme as an anti-inflammatory/detox (DD is allergic to it)
- occasional alpha lipoic acid on days they complain of muscle pain, brain fog or a general sense of inflammation, also use it when they're fighting colds to help with detox
- have used vitamin C thru the winter. Not clear is it helped keep them healthy. I will run out next week and probably won't refill until the fall, as the kids are tired of taking so many pills
- psyillium husk - helps with stool softness/regularity.
- B6 as a glutathione precursor
How do you mean, or how did you firgure out that your dd was allergice to reveratrol?
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We have taken a path of treatment that involves following the GAPS diet(Natasha Campbell Mcbride) and treating infections, minor sore throats etc with vit c to bowel tolerance. Our son had presented with OCD(mild Jan 2011 to increased in Aug 2011) and with this approach we managed all symptoms except he had still refused to use bathrooms other than those at home. Over Christmas(2012) he had a cold and I got quite ill with a flu. While I was out of commission my husband did not follow my protocol for vitamin C and our son regressed to the place he had been 1.5-2 years earlier. It has now been about 10 weeks with no reduction of symptoms. We are back on our diet(stage 4 gaps) after giving it up in Jan. I am not back to supplements yet but will start to include again soon.
Just wanted to share this. It is sooo hard to manage regressions. I had worked day in and day out to get him to where he was. There are some positives out of this. My husband now sees what happens when not cared for with diet and vit c. As well it affirmed for me what we are dealing with(PANDAS). I had prevented all reactions(regressions) by starting vit c at the beginning of sore throats etc.
I also just wanted to connect and sympathize with parents and kids going through this - the up and down nature of it, the endurance to work with and heal, the extreme crisis this puts a family into. I see that we can become closer through it but it is hard work, isolating, and the rewards are not always forthcoming.
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
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Well....... This is interesting.
Doctor was sending me the form in the mail that needed to be signed by the deadline. They sent the wrong person's form.....
Poor Marge, she needs to sign she is refusing a colonoscopy.......
So insurance companies are building cases if you don't do what is recommended, when it is recommended. It's not just vaccines.
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.
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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!
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Nope..just camk 160
and the D1
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I'm confused by this, too. My dd also had very, very high anti-D1. Her anti-D2 was within range. Her camK was 187. She had severe OCD AND significant tics/choreiform-movement issues. She was textbook PANDAS presentation, and standard treatments--IVIG, abx, steroids while symptomatic, have brought her back.
Wondering, and EAMom hoping maybe you know, if immune deficiencies/low overall immunoglobulins would affect results? Would the levels for someone whose body doesn't produce enough IgG in general be a reliable indicator of elevated or normal levels on a test like this? I don't know enough of the science behind this test to know if that would make a difference. But if it does, I wonder if there've been any studies to determine if SC patients show a similar trend toward low normal to low immunoglobulins as it seems to be fairly common with PANDAS. Also, I wonder if they measured subjects quantitative immunoglobulins, b/c it seems important if that would affect the results. And if it does, and there is a different pattern of quantitative IgG levels between SC and PANDAS patients, wouldn't that impact the interpretation of results? If that info is unknown, seems like some follow-up would be necessary, and might yield more info or clues about what this all means.
Will be interested to see what else comes up about this, especially given my dd's somewhat illogical results.
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
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You mentioned addressing EMFs and using sauna. Could you elaborate a little please? Thank you so much for the hope you have given us, lyme mom. DD11 is 1 year, 9 months into treatment. We were going along very well until we added 1 drop of grapefruitseed extract for dental plaque. All heck broke out with itching rash, age regressive behaviour and motor/vocal ticcing. I know there is something I am missing, but am still on the hunt. Thanks again.
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.
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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
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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?
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Smarty..check your mailbox.
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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?
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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.
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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.
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Does anyone have a low Cam Kinase number, but still have PANDAS?
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...
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How interesting. It seems like you're not the only one to question the link, Linda. It looks like "the field" is wrestling with case reports hinting of allergies protecting against the severity of autoimmune diseases and autoimmune diseases protecting against allergies. (However, certain autoimmune diseases are associated with allergies.)
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?
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I just read the post about allergy shots and got thinking. Our older son has had severe allergies, seasonal, food... since he was born and has been getting shots for the last five years. Now my younger son, who has had no allergies or any other health issues, gets the Pandas problem.
From everything I have read, it would have seemed more likely for my older son to get Pandas. Since he has been getting frequest doses of steroids over the years and is already battling the allergies, could that have had an influence over him not getting Pandas?
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?????
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I just read the post about allergy shots and got thinking. Our older son has had severe allergies, seasonal, food... since he was born and has been getting shots for the last five years. Now my younger son, who has had no allergies or any other health issues, gets the Pandas problem.
From everything I have read, it would have seemed more likely for my older son to get Pandas. Since he has been getting frequest doses of steroids over the years and is already battling the allergies, could that have had an influence over him not getting Pandas?
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.
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My son's doctor recently started my son on a DMPS/glutathione/phosphatidylcholine IV-push to help him eliminate heavy metals from lyme biotoxins. His doctor wants the IV-push to be done once a month. He said it would help my son heal much faster. He suggested the treatment because my son had started to regress some for the first time since being treated a year ago. So far, it appears that the IV-push is helping my son out of the regression. He has done very well today.
I was curious if there is anyone that has experience with the DMPS-IV push. Some things I have read about it are frightening, and I'm not happy that it is a drug, but so far it seems to be helping. Has anyone seen good results with this type of IV-push? Thanks!
can i ask what your thoughts are on the phosphatidylcholine portion of the push?
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Hi everybody. I am happy to report that my ds 10 is doing great. I am watching him carefully and swabbing his throat every couple of weeks to be extra vigilant. He is off antibiotics and used Anatabloc whenever he gets tics. I had 2 questions. First, do any other Pandas kids here display tics but no OCD signs? At the height of his exacerbation my son had very bad motor and oral tics, distress and inattention but no traditional OCD symptoms. Is OCD something I can expect down the line? Also, I am curious is your kids do better in the summer when school is out. Finally, are there any PANDAS support groups in Manhattan? Thanks!
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!
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so, here goes my another question. After my son's vocal tic did not improwe we tried steroids today. Prednisone. 40 mg ix daily. After only 3 hours after he took the the pill his tics are so much much worse. We don't have any bad temper, no rage..he is ok, just his tics are so much much worse.
Don't know what to think. I've read that so many opposite comments..some say steroids make tics worse if a child has TS not pandas..
Has someone experienced tics worsening (not behavior)while on steroids and than a betterment?
We really feel hopeless this time..
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!
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I am celebrating! It was only 99 degrees F, but given the fact he usually comes in at about 96 degrees, and hasn't had a fever in years, this is very significant. Was having hot and cold flashes with it, as his body was fighting. He appears to have the flu, and maybe strep, and pneumonia and who knows what else. Saw the dr. today. Been out of school for 4 days now, and will take off through tomorrow at least. We've been treating for lyme, bartonella, babesia, erlichiosis, and a host of other things for 5 years (the lyme and co- for about 2 1/2 years.)
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!!!!!!
Teen accused bomb plot, rare form OCD/PANDAS
in PANS / PANDAS (Lyme included)
Posted
this family will need support!
http://www.cnn.com/2013/05/28/justice/oregon-teen-bomb-plot/index.html?hpt=hp_t2