Can anyone help explain test results?

[Debbie1]

Hi everyone,

 

Its been a while since I posted. First an update - we have not seen any tics in the last few weeks! My son has been doing so well on the elimination of artificial colors, flavors, preservatives, etc. that we just started reducing his medication (under supervision of his doctor, of course).

 

We just received test results for his IGG and other testing in advance of a follow up appointment with our doc next week. Can anyone help us understand some of the results?

 

First - IGG:

 

No foods in the high or medium sensitivity category. Low sensitivity to:

 

Wheat Gluten

Wheat

Gliandin?

Garlic

Sorgum?

Kidney Bean

Egg Yolk

Egg White

 

Sensitivities ranged from 3.02 (Wheat Gluten) to 1.46 (Egg White)

Do foods in this low sensitivity category affect tics/OCD or can they remain in the diet?

 

Other tests with abnormaly high results:

3-oxoglutaric

3-indolcacctic

BUN/Creatinine

Vitamin B12

 

Abnormally low results:

Lactobacillius

Bifidobacteria

Vitamin D

 

Can anyone help us make sense of any of this?

 

Thanks in advance!

Debbie

[lurker]

Debbie,

 

It's great that he has only low sensitivities. Some people remove all reactive foods. I would at least reduce them and be sure not to combine them on any given day.

 

I think high 3-oxoglutaric is a yeast indicator. Which lab did you use?

 

Regarding b-12, were you supplementing at the time of blood or urine testing or had you discontinued for several days prior?

 

The last items are benificial bacteria. I think its safe to say your doc will recommend probiotics and vitamin D. Cod liver oil is a great source of A and D.

 

Tami

[Debbie1]

Thanks Tami.

 

We used Great Plains for the IGG and urine, Genova for stool testing and LabCorp for other routine blood work. I think the 3-oxoglutaric was on a Great Plains report (I don't have it in front of me - I could be mistaken).

 

My son is not currenty taking any supplements other than his regular mutivitamin but does sometimes drink vitamin water (I think I read that sports drinks can elevate the B12 number).

[faith]

Hello Debbie,

Ditto about him having low sensitivities. One less thing to worry about.

 

As far as the B12, if you say it was very high, like really up there as in 900 or more, then I am interested. Now I am starting to thing we should all have this testing done. What I can tell you about that is that it may be an indicator that the B12 is not being converted and is thus "building up" cause it is not being utilized properly. my son has this and it is being fixed with the "methyl" B12 shots, which are the next step down the chain. I am starting to look more closely at this, as I think this methylation cycle is ultimately related to the transulphation cycle where homocysteine is broken down, and after that it is a little complicated so I won't try to explain right now, but I am still researching this. Anyway the reason this is happening is due to the MTHFR gene mutation that we have mentioned here several times. I do know that it is part of the DAN blood testing, and that's why we had it. It seems many autistics have this too, and so do benefit from the shots. I would inquire about it at your follow up visit.

 

Faith

[Debbie1]

Hi Faith,

 

Thanks for your input. His B12 was very high at 1139 with a normal range listed as 211-911. I have heard of MB12 in some of my research, but did not realize it is used to normalize high levels of B12. I thought I read it helps to release toxins for those with high mercury levels. Can you (or anyone else) tell me what B12 does in the body and how high levels of B12 may affect kids?

 

Do you see improvement with the shots?

 

Debbie

[faith]

Debbie,

I'd be interested to know more about the mb12 helping to release mercury (or toxins?).. I have some thoughts on that, but first let me hear your info and then I'll elaborate.

 

If the reason for the high b12 in the blood tests is because of build up, then yes, the reason may very well be because he lacks the enzymes to convert it, and the most well known about this is that "homocystein" builds up and supposedly that is a bad thing because it increases risk for heart disease, something like cholesterol. I believe that if this part is blocked, then the rest of the cycle gets messed up (methione, glutathione) so hence the detox pathway may not work as well as it should. I have not discussed this with our doctor, but am sort of doing this sleuthing on my own.

 

***This part is interesting and I wanted to relay this to all of you, so being that we are discussing it here, I think its well worth others noting this part of our experience.........

 

to continue......

I can tell you this.... we have been using the shots for over a year now. In the beginning I started with a nasal spray form and after a month or so, I did not see any real improvement in the tics (not that is was supposed to be exactly for that, but I had my hopes). Then I switched to the shots, and after about 6 weeks on them I did see improvement. HOWEVER, at the same time, I was doing a dietary restriction due to an Igg testing and so I was pretty convinced that removing corn ingredients was the ticket. But it may very well have been the combination of removing the offending foods AND that the shots were kicking in and further helping the detox path along. (This is totally my reasoning). ... Now not really realizing this for what it may have been, and things were going reasonably well, not tic free, but good enough to get myself off the floor.

 

The story takes a turn, and this past November I decided to switch back to nasal spray (no idea why, except I was figuring it would be easier to give him and I had done some reading where some experts thought the spray was better absorbed, so I thought I might get even better results). We continued like this for a couple months, and I wasn't really paying attention to this part of it. Things were slowling going south, but I was paying so much attention to the dietary restrictions and not looking at this. Somehow while paying attention to CarolynN's research, somewhere along the line I got it in my head that maybe the B12 wasn't working for him in the nasal spray form and that maybe his pathway was again getting blocked up? It was like God was telling me "look HERE." So I switched back to shots, and I can say that after about two weeks, things have gotten milder again. Not totally, but again, enough to see that maybe something is helping. And I have paid more attention to supplements that i should be giving to compliment the B12, such as B6, I was not giving anything else except magnesium, and too much of it, now that I think about it. I have not tightened up on his dietary, so I know it is not because of that. It is my feeling that the methyl B12 that he gets may be helping in his detox pathway more that I know or understand. I am really doing alot of reading and taking notes, but man, it is tough to make sense of it all, its not so cut and dry. Actually, I'm wondering if this was a good thing having the setback, because now I may just be more sure of keeping up this part of his supplement plan (where before I just kept it in because I didn't want to change anything if things were going okay), and at $100 per month cost, at least I know I am spending this money worthwhile.

 

Anyway, let me ask you how your son is doing right now, and what you have been doing, if anything, to manage the tics? I'd be interested to know what your doc has to say about it all, too. And let me know what your take was on the methylb12 as you said, maybe it might give me another piece of my puzzle.

 

P.S. Looks like Kim has posted some good links about the MTHFR gene on another thread (PANDAS specialist in NY) so check that out.

 

Faith

[Debbie1]

Faith,

 

It sounds like you have more knowledge on the MB12 than me. I read about it in passing while I was looking for the right doctor to chose. I believe where I saw it was on one doctor's website as link to an article. We were considering this doctor but decided on someone else. When I called the office to inquire about the doctor, his staff member told me that they routinely start their patients on MB12 even before blood results come in to help the body detox. Now I do not know whether this staff member was giving me correct information and like I said, we went with someone else. I can PM you with his name early next week (I have to look it up, but right now have to go prepare for company that is coming over the weekend.) Let me know if you are interested.

 

My son is doing well right now - I can give you more details next week on that too.

 

Debbie

[kim]

This is a great exchange of info Faith and Debbie 1!

 

You GO Faith! I'm nominating you our resident MTHFR expert, oK?

I think snickers are allowed when referencing this gene.

[faith]

kim,

i'm starting to wonder if more of our kids have this than we know. The only way is if you have testing by a dan doc or maybe by chance a blood test that shows high b12 and folic acid? I'm kind of curious, I know it is said that it is not than uncommon. If anyone out there is aware of these in their kids tests, could you please let me know here? .... And as you know, it is something that seems to be popular in the autism research, I think that's where they first looked at it. I know when I asked the doctor for more info about it he just wrote down "MTHFR" and said I could look it up on the internet, but said there probably won't be alot of info. That was about a year and a half ago, but it does seem more comes up in a search now. I think I even asked at that time if this could be the gene involved in tourettes? But he said no.

 

The feeling I have is that it is somehow involved in the pathway that ultimately gets to glutathione, the detox path is it? B12 and folic acid are doners somewhere along the line, so my line of thought is that if this part is blocked, then the rest gets screwed up and does not properly aid in filtering toxins. Our doctor has never said this to me, he never really offered any explanation except that we needed the methylb to "bypass" this problem, and that it is a marker for high homocysteine, which is not good in that it is a contributor of heart disease and stroke?.....but .... methinks there may be more to it than that? ........for our kids anyway.

 

Faith

[kim]

Faith,

 

I agree Faith.

 

It looks like you and Debbie each have a child with one variant MTHFR gene. This would be a heterozygous mutation (one variant gene) according to this site.

http://www.fvleiden.org/ask/51.html

It also doesn't look like they are very concerned about a heterozygous mutation, more concerned if it is homozygous (two variant genes)

 

I'm wondering why the Dr.s looked for it? Were any other genetic abnormalities checked for, or just the MTHFR? I don't think they know the significance at this point, but they were looking. Maybe inadequate sulfur isn't something that they are even considering.

 

The CBS mutation the MTHFR and V leinden seem to be associated. Antiphospholipid and V leiden are associated. The ability to detox i think is a big part, but if you take another look at Carolyns Sulfur thread, you will see that these pathways need to be functioning right to make adequate amts of sulfur too. Heperan sulfate is involved in cell to cell communication and neurotransmission. SO.... How big of a piece to this puzzle could we be looking at, i don't know, but sure seems worth keeping the discussion going on. My boys may have a problem cellular expression of heparan sulfate and lack of GlcNAc(from what i have been able to gather GlcNAc is involved in pain pathways and autoimmunity). We have a mom who says her child got bruises for leaning her elbows on her thighs, petachia's and purpura with strep (i bumped that thread recently), antiphos and V leiden, my boys both had high MPV which suggest "newer" red blood cells (what happened to the old ones) the reports of rheumatic fever? It seems like there are so many associated conditions here.

 

 

Do you remember this from Carolyn N's thread?

 

Excellent Carolyn!

 

Now think about this. We have two posters here that have each had testing done that has shown a mutation in either MTHFR and one with a CBS mutation.

 

From one of your links

Your body makes secretin, but it also makes sulfate from the amino acids cysteine and methionine. There may be a reason this isn't

happening appropriately.

 

 

Now check out this page

 

http://www.med.uiuc.edu/hematology/PtHomocysteinemia.htm

 

* my note MS=methionine synthesis......you can supplement methionine, but you may not avoid the problem of increased homocysteine by going that route.

 

MS requires vitamin B12 (methylcobalamin) in order to carry out its reaction. If a patient does not have an adequate supply of vitamin B12, then homocysteine is not converted to methionine and the net result is an increase in homocysteine.

and

 

MTHFR is required to form 5-methyl tetrahydrofolate (as depicted above). This is required in order to convert homocysteine to methionine. If this can not be formed, then homocysteine levels will increase.

 

and

 

The final enzyme associated with elevated homocysteine levels in CBS; this is required in order to convert homocysteine to cysteine. If this enzyme is not present, then homocysteine levels will increase

 

This one makes me wonder if a high fever or an increase in problems during hot months could factor in?

 

A person who is heterozygous (see *below) for a mutation in CBS or in MTHFR will generally have mild increases in homocysteine levels. There is another type of mutation that can occur with MTHFR. This mutation results in a thermolabile variant (that means that the protein becomes inactivated with heat

[Debbie1]

Faith,

 

I tried to PM you with the information on where to go for those articles I read on MB12. I got an error message that your mail box is full. They are on a doctor's website and I was hesitant to write the doctor's name on the main board.

 

Debbie

[faith]

Debbie,

I'm clear now, so you can try again, I'd love to see those articles you have.

 

Thanks

Faith