Question re. test results

[samsmom]

We just got Sam's results back yesterday from his Great Plains and DiagnosTech tests. I was so excited about going to get them! The main thing that jumped right off the page was a really low figure on the stool test for intestinal SIgA (antibodies, apparently). The norm is 400-880 and he was at 31 . The doctor said only 5% of his patients have a figure this low. There was also some indication of yeast overgrowth (arabinose was at 109, where normal range is 0-47, and 3-oxoglutaric was at 0.88 where norm is 0-0.5). The doc thinks we should treat the yeast as this may be what his body is fighting, and getting yeast closer to normal will enable his body to elevate his antibodies?? Wish I'd paid more attention in my science classes..

 

Does anybody understand this, and does it make sense? Would just like to have a second opinion from anyone who knows!

 

Also, he wants to put him on 100 mgs per day of L-Tyrosine as his VMA level was low (0.27 where the norm is 1-4.7). I think I may have seen some postings warning against using L-Tyrosine on this forum? Am I right? I did a quick search but didn't really come up with anything.

 

Thanks so much

Sam's mom

[Chemar]

Hi

 

I cant answer re the antibodies as that really is a bit alarming and needs qualified medical knowledge to fully interpret............clearly something in his immune system is not right tho, and yes, any form of microbial infection, including candida can totally unbalance the immune system

 

re the l-tyrosine........yes, that is one of the amino acids that are contraindicated in tourette syndrome

 

sorry I cant be of more help but this is way out of the realm of my knowledge and experience

 

hope you get answers and an effective treatment

[kim]

Samsmom,

 

Tyramine and Tyrosine are both discussed a bit on Bonnie's site (developer of the Bontech vits)

 

http://www.bonniegr.com/Interview%20with%20Bonnie.htm

 

Then you might want to start reading here.

 

http://aolsearch.aol.com/aol/search?encque...er&ie=UTF-8

 

It would be great, if you could come back with anything that you learn. Maybe you can point out, where in some cases supplementing may be beneficial, or confirm that you don't think this is something that you want to see your son take.

 

Kim

[Claire]

I have to repeat something on yeast...

 

It can be a result of metals, and some doctors think it is best to get rid of the metals before the yeast. It might be worth doing the porphyrin urine test for mercury/lead. No doctor's sig required, $115.

 

Claire

[samsmom]

Thanks for your replies on this. I did some browsing on the Internet last night to see what else I could find out about SIgA (at least I know what it stands for now!) and in all the research papers etc. that I looked at, I didn't see a test result as low as Sam's anywhere. Pretty scary.. And weird, as he never has had any intestinal issues. Apart from the tics, he's always been healthy, more than most of his friends - no ear problems, stomach problems. Just the occasional cold. Claire, is the porphyrin test only available thru the lab in France?

 

Thanks again

[orthomolecular]

Low VMA (or homovanillic acid) levels indicate low dopamine levels. The tyrosine is being supplemented to boost dopamine levels.

 

Sometimes when you take too much tyrosine it can cause anger or irritiability issues. Usually that is an indication to lower the dose. Tyrosine can also be converted into epinepherine - the flight or fight hormone, which may be the reason for the irritiability.

 

Sorry I have no idea about the other results.

[samsmom]

OM

Thanks for your reply. I'm confused - I thought that people with TS were thought to have levels of dopamine that were too high. Am I wrong on this?

[Chemar]

samsmom

 

I dont blame you for being confused as you are correct that dopamine levels are usually not deficient in people with TS

 

here is an article on the Chemistry of Tourette Syndrome

http://au.geocities.com/jones_kacm/chem.htm

 

this will explain about the problems with dopamine in people with TS and why IT SHOULD NOT under normal circumstances be further elevated by supplements, as this could result in tic elevation

 

The fact that your son has tested low VMA is a very surprising result for someone with TS,and I would highly recommend that, before you begin supplementing with tyrosine or in any way doing anything that would boost dopamine levels in someone with Tourette Syndrome, you really should speak in detail with a qualified medical doctor who has experience with TS, whether the doctor who ordered these tests and treatment or a second opinion, or even having the tests re done to be sure of the accuracy of the results

 

As well meaning as people giving information here may be, it can be problematic when contradictory information is presented based on personal experience that may not be specifically associated with another persons unique situation.

 

you really do need these results to be explained to you by someone who is fully qualified to analyse them and who is also knowledgable about Tourette Syndrome

[samsmom]

Thanks for all your comments. Wow, I thought as we got further into tests with Sam, we would get a better picture of what's going on, but instead it feels as though everything is just becoming more and more confused!! I am at a loss as to what to do next. Our environmental doctor is very experienced, but not with TS in particular. Our neurologist (actually he's asst. professor in child development and something else..) at Children's Hospital is the go-to guy for TS around here (he contributes quite often to the TSA's newsletters) but he is not supportive of alternative treatments, in fact he even published a paper recently which basically denounced them all .

 

I guess I will take the test results when we go to see our pediatrician on Wednesday for Sam's 6 year well child visit. Maybe she will have something to say about them. If not, I will be back here to see if anyone else has any other recommendations.. Why is it so hard to find someone who knows about this disorder??? I am so frustrated!

[patty]

Samsmom,

 

I understand your frustration. My son started with an acute case of head nodding tic about 7 months ago, so we been thru what you are going thru and was frustrated with the "wait & see" approach and "no cure" type answeres. It was also hard to find doctors that are supportive in alternative treatments. I have been critized for that, so i no longer discuss that with my son's ped.

 

Anysways, that's when i decided to do my own research, and I got alot of helpful info. from this forum. People here are responsive, supportive and are truely interested in helping others.

 

Can you describe more on your son's symptoms? Maybe i can offer some suggestions that has helped my son.

 

patty

[Chemar]

samsmom

 

you may also want to consider printing out the article on TS chemistry and showing it to the enviro doc who did the testing.........even tho he doesnt necessarily know much about TS, reading that article may provide some insight into the test results for him....and yes, a good idea to let the pediatrician read the article and look at the results too

 

as to the neuro..........hmmmmmmmmmm so many of them are so anti alternatives and yet they are so quick to scribble a prescription for something that can have severely adverse effects on our kids....but they seem to go with the Big Pharma flow regardless of the growing evidence of the harm these meds are doing to kids

 

Do be encouraged tho that this IS a piece of the puzzle and just because it seems confusing now, doesnt mean it isnt going to be a big step in your child's path to healing.....hopefully the combination of your pediatrician and enviro doc will provide some clearer answers.......dont give up! you are doing the right thing by asking questions and doing your research so thoroughly, nomatter how frustrating it can be at times...for most of us, it has been our research taken to the right physician that has been the biggest help !

[orthomolecular]

 

As well meaning as people giving information here may be, it can be problematic when contradictory information is presented based on personal experience that may not be specifically associated with another persons unique situation.

 

 

Chemar,

Is there a problem with the information I posted? Can you explain what that statment refers to and what the problem is exactly.

[Chemar]

ortho

 

it is a general statement, not directed at anyone

 

people with TS usually do not have low dopamine levels and supplementing with tyrosine is a known problem for people with TS

 

the results that samsmom posted seem to suggest that he is low in VMA and therefore, as you have pointed out, possibly low in dopamine. this would be very surprising for somone with TS and so we (ALL) need to be very careful in making recommendations on this situation as this is clearly an unusual case, and needs careful qualified analysis.

Giving tyrosine or any other dopamine stimulant to someone with TS can be very serious

 

no-one is criticising your statement, just helping samsmom to see that we ALL, (not just you) however well meaning we are, are not qualified to comment specifically on what is going on with her child because his very test results are providing information that is contrary to the norm for TS.

 

where we do all willingly share our personal knowledge and experience, we all still need to remember that the unique biochemistry of an individual sometimes means that they may not fit the mold for what we know from our own research and experience

[rcwang]

Samsmom,

 

I understand your frustration with the doctors, but it really IS just finding the right ones that are open to hearing your ideas. Our pediatrician was regarded as one of the best in the State with a Stellar reputation. She was wonderful in all the sense of the word, except... she was not open to trying our ideas of natural methods of nutrition, diet, allergy control. Basically, she did not believe it would make a difference and I sat in her office and CRIED!! One good thing after our pushing, she finally refered us to a good neurologist who is totally supportive of our natural choice and helps us to monitor our daughter. In the end, we found another pediatrician. It is our children and we have to make the best decision we can for them. Going through this is hard enough and we need to surround ourselves with support.

[samsmom]

Hi there

Thought I'd just give a quick update as we saw our enviro doctor again today. We did a retest on candida a couple of weeks ago as Sam had shown candida overgrowths (arabinose and 3-oxoglutaric) on the previous test. We treated him with Nystatin for a month and there was no sign of those 2 overgrowths on the latest test. That's the good news... But here's the bad news - it showed abundant overgrowth of geotrichum candidum on this one!!! This is apparently more aggressive and harder to get rid of than the ones from before!! Our doctor has suggested giving him Diflucan for a month or so to see how he responds.

 

It was a disappointing result, but also very interesting to me, as Sam's behaviors have definitely changed over the last 3-4 months. He does very little of what I would call classic tics. For the first year of symptoms, he was classic TS to me - stamping one foot, banging one arm against his side, banging his chin on his chest, head shaking, and occasionally going thru periods of vocal tics. But we have seen almost none of that recently. I had said to friends only recently that his behaviors now seem more autistic, especially over the last 4-5 weeks, as he's twirling around a lot, waving his fingers in front of his eyes, rolling onto his back, or pushing his face into anything soft (before 4-5 weeks ago, he was just waving his fingers in front of his eyes). He is, however, a bright kid and very social - he wants to engage in social activities with other kids and is quite chatty. Now I'm wondering if this latest yeast overgrowth is causing the autistic types of behavior.

 

What's even more interesting is that we've seen a slight comeback in tics in the last 4-5 days, which coincides perfectly with an increase in pollen counts around here. We know that he has pretty severe allergies to many pollens. We've been going thru desensitisation with sublingual drops to try to combat these since last May. But I'm feeling that maybe the spring/summer months will be tough for him just like they have been for the last couple of years.

 

Although this is all a little discouraging, I feel like we are at least beginning to really see what we need to be fighting here.

 

I would love to hear any comments anyone has about using Diflucan or anything else for this kind of yeast overgrowth. And how else we could help him with this e.g dietary changes etc. And if anyone else has been able to desensitise successfully to pollens using any other kind of method. I'm also interested in the references to histadelics that I've seen recently. Sam seems like a classic case in many ways. I asked the doctor about that today and he said he's been looking for a reliable lab to do good testing on histamines and would like to maybe follow up in a couple of months on that with us. Any input anyone has on that would also be appreciated.

 

Thanks a lot!