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Faith


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Hi Faith,

 

I was reading your post on another thread, and got to the part about the MTHFR mutation. I was kind of shocked to see that remark and really intrigued.

 

Has your DAN ever mentioned Dr. Amy Yasko? She does a line of genetic testing and the MTHFR is one of them.

 

You might want to visit this site, and the parent group, to learn all you can about this mutation.

 

http://www.autismanswer.com/

 

I hope you will keep us posted on what you are able to come up with. I believe, Yasko's protocol is a complicated beast, but I do feel she has some of the answers, for some children, who have not responded well to the standard DAN methods. The genetic testing seems key in this, from what I've read.

 

These articles have so much useful information. I get something new out of them, each time I read them. Whether your interested in PANDAS, diet, glutamate, sulfur, sugar dysregulation (biggy for us) digestion, vaccines, etc, she touches on all of them.

 

Reversing the process.

http://www.autismanswer.com/articles/yasko..._reversing.html

 

The Role of Excitotoxins in Autistic Type Behavior

http://www.autismanswer.com/articles/yasko...citotoxins.html

 

Autism: A Twisted Tale of Virus and Thimerosal

http://www.autismanswer.com/articles/yasko...thimerosal.html

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Hi Kim,

I havn't figured out how to use those smiley faces yet, but if I did, I would choose the one that looks "confused" and then wacked out!!

 

I am really nutsy today, as I am neeeding to understand not really what the MTHFR is, but how and if it should be treated, and what the implications on tics could be. As I assume you read, we are using methyl b12 shots (along with FOLINIC acid) as this was recommended by our DAN doctor. (Just to clarify, my son is not autistic, we just went to this doctor for the tics, and he is also an allergist and immunologist. I am assuming he uses this protocol because this is what they use for the autistic kids who they have found to have a high percentage of them have this gen mutation, (not all). I believe he is one of the doctors who did the initial research on this.

 

My problem is that we have been doing this for about three weeks (shots --previously intranasally), and I really haven't seen any improvement in the tics. Actually, I feel it is the opposite. After the first 10 days is when I noticed the second tic start, and I got nervous and stopped the B12. I informed the doctor and he said it shouldn't cause more tics because it is natural, (whatever that means), but said I could stop if I felt better about it. So I did for next three weeks, I think, but I don't think anything happened one way or another. But then we started again with the shots, thinking it would be more potent (just my gut feeling).

 

On another note, I recently asked a question of a doctor on-line (let's just say he seemed to know exactly what I was talking about and sounded like he he knew alot about this since he has a degree in chemistry and did a paper on this subject. When I mentioned the part of my son getting the methyl -b12 shots, he thought this was unnessary and could be treated with oral b12 and folic acid. He believed the FOLINIC acid was not the way to treat. He even told me to take the e-mail info he gave me and bring it to the doctor who could contact him if he wanted to. So I am so wondering about all of this and am feeling quite helpless and overwhelmed about it. Sorry to tell you all, but I wonder why you had an interest in this. Do you know of anything that might help? As I write this, I don't feel my son has responded positively to this and am not really touting this yet. I wondered if anyone else has experience with this protocol?

 

So I have to go and question all the docs I deal with--I know you know what that's like!

 

Were you thinking of this for your child?

 

Also, Carolyn, if you read this, this info is in addition to my reply on the other thread of Pearldoves.

 

(leaving now to get a hard drink!)

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I'm going to continue the discussion about methyl-b12 shots & heavy metals on this topic.

 

Faith,

 

Yes, I'd look into the pink urine a bit more. As found on the page below by Dr. Neubrander under letter b, if the urine is pink then the methyl-b12 is being injected into the muscle. His protocol calls for it to be injected into the fat. He goes further into explanation. http://www.drneubrander.com/Files/READ%20M...B12%20Shots.doc

I would consider discussing this with your doctor and if that's the protocol your using, discuss doing the shots in the butt instead. I don't know if that's the protocol your doctor's using or not, but I would be sure first incase the syringes are different sizes or something. I know the ones I use are very very tiny. If this is the case and you're supposed to be injecting into the fat & aren't getting into the fat maybe your not seeing the results you would or wouldn't see otherwise.

 

I don't know about the glutathione kicking in and maybe helping him detox without any additional help. I know a lot of the kids with Autism are doing both MB12 shots & chelation of heavy metals. Again, many are not.

 

These are just my personal feelings, but I think a lot of the video's on his site about kids with Autism recovering from mb12 shots are sort of falsely advertised by saying that mb12 shots were the only thing responsible for their recovery. I was asked to do a video, but I didn't do it as he wanted all the emphasize to be on mb12 shots. For me mb12 has not helped my tics, but I believe it has played a role along with the chelation in helping my sensory issues. However, my results have been from a combination of things and not just one thing.

 

As for the folinic acid versus folic acid, I don't think there is a one way that fits all children/adults. I think some children/adults do well on folic & not on folinic. I also think some do well on folinic and not folic. I think there are also some that do well on both and others that don't do well on either one of them. It all just depends on the individual. For the most part it's trial an error as to which one works best if any.

 

Carolyn

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Faith,

 

I'm so sorry that you are feeling so overwhelmed right now.

 

I'm totally incapable of answering your questions, but I did do a little reading on MTHFR.

 

I pulled just one paragraph out of an article, because it mentioned methionine, in relation to a defect in this gene.

 

Then I copied the second excerpt, to try to help you understand, how this defect might be involved in your son's symptoms?

 

This is such a small part of the big picture, but may be a starting point, for you.

 

http://64.233.167.104/search?q=cache:k3cWD...=clnk&cd=10

 

Methyltetrahydrofolate is essential inone-carbon-donor metabolism for the remethylation of homocysteine to methionine and the generation of metabolically active tetrahydrofolate in the methionine synthase reaction. Common polymorphisms in the MTHFR gene have been associated with reduced enzyme activity. A detailed review of folate metabolism and MTHFR is available from Schiveretal. MTHFR is located on chromosome 1 at 1p36.3. Common single nucleotide polymorphisms of the 677C T and the 1298AC alleles in the MTHFR gene decrease the activity of the enzyme. The 677C T allele has been associated with neural tube defects, cerebrovascular and cardiovascular disease, inflammatory bowel disease, colorectal cancer, and psychiatric disorders.

 

 

http://www.answers.com/topic/methionine

 

Methionine

Description

 

Methionine (C5H11NO2S) is an essential, sulfur-containing amino acid. It is the source of sulfur for numerous compounds in the body, including the amino acids cysteine and taurine. The body uses sulfur to influence hair follicles and promote healthy hair, skin, and nail growth. Sulfur also increases the liver's production of lecithin (which reduces cholesterol), reduces liver fat, protects the kidneys, helps the body to excrete heavy metals, and reduces bladder irritation by regulating the formation of ammonia in the urine. Methionine is a lipotropic—a nutrient that helps prevent fat accumulation in the liver, and usually helps detoxify metabolic wastes and toxins.

 

S-adenosyl-L-methionine (SAM, or SAMe) is an active compound made from methionine and adenosine triphosphate (ATP), an enzyme found in muscle tissue. SAMe is manufactured within the body and is found in almost every tissue, but it can also be made synthetically. It acts as a methyl donor in a variety of biochemical pathways. Methylation reactions are essential for the detoxification of harmful products of metabolism, and the synthesis of numerous physiological agents including neurotransmitters, cartilage, and glutathione. (Glutathione is a chemical that plays an important role in biological oxidation-reduction processes, and as a coenzyme. It can combine with toxic substances to form water soluble compounds that can be excreted through the kidneys.)

 

 

This just touches on methionine. There are many other substances, that are mentioned in these articles, that you will probably want to become familiar with.

 

It's not a matter of treating the mutation, it's what clues identifying the mutation provides, in treating things that may be contributing to your son's symptoms, that's important, I believe.

 

This is such a complex subject, and the Dr.s that are brave enough to stray off the beaten path, appear to be overwhelmed in some cases too. I think parent involvement and observation, in most cases is quite helpful.

 

Just take your time, and keep asking questions. It sounds like you have some good Dr.s guiding you with this whole thing.

 

kim

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hi and thanks girls for the input. This is so tough to understand, you need an mba in chemistry and I'm a college dropout (I filled out the application and never went!!! :P ,

 

Kim, the article you accessed, how'd you find that--the author Dr. Boris is our doctor!

One would think I'd get all that info from him, but, I don't know, he basically justeshowed my a diagram of the methylation process and what we could do to correct it. You know at the moment you're in the docs office, you're a little tongue tied and don't know what to ask without sounding stupid, so I did go home and look up alot of stuff (about the MTHFR and the B12 protocol by Dr. Neubrander. that Carolyn mentioned, (also saw the videos) but what I really want to know is, is this going to be beneficial for the tics. I'm still not sure what it is exactly going to do, because I havn't seen anything yet.

 

But thanks, Carolyn, I will have to ask alot more about that way of giving the shot. I did read the stuff by Dr. Neubrander, so I was surprized when our doctor said to give it anywhere. Our next visit is next week, I think, so I will have to address all this.

 

You are right Kim, what you said about the clues the gene mutation provides, that is what I'm trying to figue out, what is the issue there that is the clue to my son's problem. I think I'm harping on this because I think there is something there, I just can't get it yet. It's something about this and his own ability to detox on his own. Does anyone here think that our kids (with tics) have heavy metal issues, just not as severe as the autistic spectrum? I mean if there are similar issues, did we just escape autism narrowly? Kim, I know you are interested in the subject, I'd be interested to know your thoughts. Also, there is some other references to the MTHFR stuff in the book "Evidence of Harm". Was that you who said you were reading that a way back? Well, if you still have the book, its in there if you're interested.

 

Faith

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Faith,

 

Kim, the article you accessed, how'd you find that--the author Dr. Boris is our doctor!
That is a major coincidence isn't it. I just used google and typed in MTHFR+neurological conditions. I recognised Jill James name on the author list, and figured this might be one of the better ones. It is pretty technical, and believe me, if someone would have given me that info, a while back, I would have been using the :P smiley too. Still feel like that, trying to read a lot of this stuff. I just absorb better, when I'm conversing with someone, so thank you!

 

You are right Kim, what you said about the clues the gene mutation provides, that is what I'm trying to figue out, what is the issue there that is the clue to my son's problem. I think I'm harping on this because I think there is something there, I just can't get it yet.

 

These are a couple of articles, that Claire had shared, when I was pretty new here. They really helped me get acquainted, with some of the issues discussed here. Maybe they would help you?

 

http://www.alternativementalhealth.com/articles/walshMP.htm

 

http://www.alternativementalhealth.com/art.../walshMP.htm#Py

 

These articles contain much of the same info, but they are a bit different.

 

If you click on the

 

PAGE A-E

 

PAGE F-L

 

PAGE M-P

 

at the bottom of the page, you can go right to the topics that you want to explore, i.e. just click on the M-P page and it will take you right to methylation.

 

Does anyone here think that our kids (with tics) have heavy metal issues, just not as severe as the autistic spectrum?
My vote is yes, on metals. The overlapping spectrum disorders, are pretty hard to ignore, but there may be substantial differences too. That second part, is probably what keeps me up till dawn, many nights ^_^

I wonder if families with a history, have noticed an increase in severity, or if the tics an co morbid conditions, in this generation, are comparable to the last? I hope if any one has comments on that, that they will add.

 

Also, there is some other references to the MTHFR stuff in the book "Evidence of Harm".

 

Yep, that was probably me. I got that book from the library, and at the time MTHFR would not have meant anything to me. I'm barely acquainted with it now!

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Faith,

 

Sydsmom has had good results with the tics using MB12 shots for her daughter. If you search posts, I know there are posts by her about her daughter's experience with MB12. I'm hoping she'll be along soon to share their experience of mb12 and when they saw results, etc. She's the only other one that I'm aware of who's used the mb12 shots with her child other than you here. So anyways if you haven't already, maybe you could search for some of her posts about mb12 shots.

 

Carolyn

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Kim, & Faith,

 

I have wondered about the heavy medal too. My father-in-law had Ts as a child he is 76 now, it would be helpful info to know what shots he had as a child if any. The only tics his brother remembers him having was a twitching of the nose. My husband had a boat load of shots as a kid he is 43 now. He started with head shaking lasted two years. Then the vocal and some sniffing. He still does it today but it is so few you really can't tell if it's a tic or not. My husband took nothing as a child because they thought it was a habit nothing else. My son exploded with tics one month after shots. His tics are much worse then his fathers and his fathers were worse then his fathers. Interesting huh.

 

C.P.

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Hi,

 

Yes, we did notice a decrease in tics and more focus while doing the B12 shots. We currently are not doing them only because we were not being consistent with the shots and felt our money was being wasted because the shots expire and only last 3 months. I know, lame but truthful. We did give shots consistently for a year though. Lately, Syd's tics are there but not too noticeable to anyone outside the family. She still takes a lot of supps. When we "cheat" too much with food we notice increase in lots of stuff, tics, focus problems and moodiness. All in all, she is doing amazingly better in the last few years since we went the natural route. So much so that people comment to us on the changes they see in her. She's happier too. I'll praise God for that. And I'm thankful I was led to this site which has been a huge support and aid in all of this. It's so great to know we're not the only family going through this and every victory I read gave me hope!

 

Goodluck!!!

 

Lisa

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Is there smiley face with a noose around its neck? Please forgive me all, I'm really out of it tonight, I may not make any sense. What you may sense is just sheer desperation. I think I would be able to walk this path a little easier if my little one wasn't showing his symptoms so much. He's been home last two days with a sore throat so I am probably more keen to them, being with him all day. Does anyone think he's doing some head shaking and grunting a little more obvious because of the throat? Its not a bad one, I've checked with a flashlite alot. He just said it hurt when he swallows but much better today. (He has had the test for ASO titres a while back and PANDAS did not seem to factor in, just to clarify). Oh God, I hate the way I feel right now, I don't even know what to write.

 

Thanks Kim for that thread with all the info. I think I have read some of that here and there but it is really full of interesting stuff. Is most of it just Walsh's opinions--can we take most of it for fact?

 

Carolyn, thanks for that instructions from Dr. Neubrander, I never saw that before. Do you have any idea why they use the METHYL B12 and FOLINIC. Is there a good reason? I'm still confused about that and why this other on-line doc I corresponded with seemed to think it not necessary for what we needed it for.

 

Cum Passus, may I take this opportunity to say I am sorrow for your recent loss, and hope things are settling down for you. I am wondering how your son is currently doing, I know you mentioned he did well since using the natural calm. How old is he? Did you say your husband just started a head shake at this age? Hmmm.

And may I ask what you meant by yur son exploding with tics after shots? What kind of shots and at what age? Curious.

 

Sydsmom, I'm glad yiu popped in to answer. May I ask what age she started the MB12 and who and why that was recommended? How long did it take to see any kind of tic reduction, and do you really feel it was due to that? When you stopped, did anything come back? Yes, its money and I wonder if that would be well spent elsewhere since I am getting conflicting info from another doctor who says high oral B12 and folic acid would work just fine for my son. I just don't know how to go about this one. When you say your daughter is doing so much better that only family would notice, I would take that so gladly. I think that's why I'm so on edge right now, my son's head shake and grunt is just showing too much and I just can't figure out why.(I have him soaking in an epsom bath right now) Also, what other things did you do or give that you think contributed to her improvement? Thanks.

 

I've been doing so much, and I guess I'm feeling so impatient about having to wait for our results of recent food sensitivity testing and metal testing. The next visit with the naturo is when I guess she will discuss our case with us and her findings and recommendations. I'm losing my head here, and feeling such a loss of confidence. I'm scared of this chelation thing. I don't know how I feel about all this. I pray its not an issue for him and we can help him another way.

 

Sorry for the downer, I feel bad for the new fella that wrote today. I can't be of any help like this. Hope someone else can. It seems like there are so many of us dealing with this issue, how come I don't know anyone around me though? When I look around, why is my little boy having this. I'm sorry, I'm just so heartbroken and scared that nothing is going to work. I pray tomorrow is a little better.

 

Chemar, if you read this post, may I ask why you didn't do any chelating with your son. And please help me understand how the natural detox methods you use work. Thanks.

 

Faith :unsure:

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Hi Faith,

 

Sorry that your so overwhelmed with all this. His tics could be worse since he's sick. My tics increase when I'm sick. Have you been giving him anything for his throat? Some over the counter meds can increase tics. My doctor always said decongestants were a big no-no. I was on them all the time as a child until my doctor at the time said not to give me decongestants.

 

Your welcome for Dr. Neubrander's instructions. I believe Methyl & Folinic are both active forms. Many children/adults specifically with Autism and even those with tics have trouble converting b12 into the active form which is methyl. Same thing for why many use P-5-P instead of just b6. P-5-P is the active form of b6.

 

There is sublingual methyl-b12 and also folinic acid. I've considered switching to the sublingual forum as it's much cheaper than these shots, but I'm kind of afraid of switching things right now since I'm in the middle of heavy metal detox. There's a DAN doctor that believes oral/sublingual b12 is just as effective as the shots. I'll see if I can't find the info from that doctor and post it here.

 

Remember to have some relaxation time for yourself. If your child senses that your stressed or observing his tics a lot, he could likely tic more.

 

I would consider looking into the detox using the natural methods that Chemar used. Your son's young and maybe he doesn't need the actual prescription chelators. I plan on using the chlorella method after I'm done with chelation to get any pesticides out of my body.

 

Also your son's head shaking tic caught my attention. That's an awful tic to have. I haven't had it for a long long time. I'm very grateful that I haven't had that tic for many years as I laid on the floor kicking and screaming most of the day because of the headaches caused by it. My headshaking tic was every couple of seconds, all day long, for years. Anyways have you considered theraputic massage, chiropractic, or Chinese cupping for your son? Both Chinese cupping and theraputic massage for me keep head jerking tics away(I only get Chinese cupping right now, but massage had the same results). Many others have had great results with chiropractic work.

 

Carolyn

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Thanks Carolyn for all of that. It is a new morning and I pray today is a little better.

Just wanted to mention, no I didn't give him any medicine for throat. And we have done some chiropractic work since right before Christmas. He had about maybe 6 adjustments, (2x week). Once he had a great weekend after one friday adjustment, but then next time not so good. So I kept on, but right now we are resting for like 10 days or so to see if he levels out. I'm not sure what if any effect its had, but I had to try.

I am thinking about the massage or cupping next as you suggested. (As I type he's a little calmer while eating his breakfast) I pray that's a good sign for this day. Thank you honey for your input and encouragement.

 

Faith

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Faith,

 

Sorry Faith my husband had those tics when he was a child. One can't tell now if he tics. My son is still doing good we started on the zinc and at first he seemed to tic more that day (still very good from what he was like) I was worried about the type of zinc it is as monomethioine. I gave it to him a second day and by day 3 he was doing really good again. I'm thinking about the krill as the next supp. but B6 might be the one to go with first. I think I'll have my husband try the krill first, see if it does anything to him. Try not to feel overwelmed trust God.

 

C.P.

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Faith,

 

I just wanted to tell you, that I think Carolyn has been giving you some excellent advise and information, too.

 

A while back, there were quite a few parents discussing pink urine in regards to the MB12 shots (on an autism forum). I'm really hoping that once you get that B12, where it needs to go, that you will start seeing some improvements, whether it's in the form of the shots, or if you decide to switch to a sublingual form. I hope you keep us updated about the debate btwn the online chemist, and your DAN.

 

In regards to Dr. Walsh, I know that much of his info. is based on some huge studies/data base. I don't know how current those articles are, and I know there has been new testing/treatments/theories, that have come to the fore recently, so, I guess, I can't answer that question. I think it is always good, to get info. from several sources. PARENTS and personal accounts like Carolyn's, included.

 

I think part of your frustration, has been in regards to how this treatment relates to improving your sons tics.

 

I tried to find things that were simply written, to help show you why this may be so important.

 

http://www.emedicine.com/neuro/topic439.htm

 

Vitamin B-12 role in the peripheral and central nervous systems

 

The neurologic manifestation of cobalamin deficiency is less well understood. CNS demyelination may play a role, but how cobalamin deficiency leads to demyelination remains unclear. Reduced SAM or elevated methylmalonic acid (MMA) may be involved.

 

SAM is required as the methyl donor in polyamine synthesis and transmethylation reactions. Methylation reactions are needed for myelin maintenance and synthesis. SAM deficiency results in abnormal methylated phospholipids such as phosphatidylcholine, and it is linked to central myelin defects and abnormal neuronal conduction, which may account for the encephalopathy and myelopathy. In addition, SAM influences serotonin, norepinephrine, and dopamine synthesis. This suggests that, in addition to structural consequences of vitamin B-12 deficiency, functional effects on neurotransmitter synthesis that may be relevant to mental status changes may occur. Parenthetically, SAM is being studied as a potential antidepressant.

 

Now read this page. It may not be the best source of information, but I had not really looked at the neurotransmitters much.

This page gave me some ahh haaa's. One thing that occured to me, was why meds that are used to "treat" ADHD may make tics worse (or bring them out), and why some meds used for tic's might make symptoms of ADHD worse. We don't use meds, and neither of my boys have ADHD, but it is really interesting to realize why things happen, which you have read or heard about. Anyway, if you get a little familiar with some of the neurotransmitters, maybe this whole thing will start to make a little more sense to you. Be sure to click on some of the links there, especially, epinephrine (adrenaline) and norepinephrine (noradrenaline)

 

http://en.wikipedia.org/wiki/Dopamine

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