Dr. Walsh on MT proteins, oxidative stress, yeast

[Claire]

I started looking more at MT proteins after Jennifer posted on it. Thanks Jennifer! It is almost 3 a.m. --I just am learning so much. I understand how you couldn't post on it--it is just too much to cover. This whole MT protein and oxidative stress could be the underlying cause for SOME ASD kids--never all of course. And it is so treatable. Dr. Walsh is amazing.

 

Here are some great links--for those not ready to order materials from the AHC site. These are long but I highly highly recommend printing them and reading them thoroughly. They will mean more for those who have tracked/tested for yeast/metals/pyroluria/food sensitivities, because you may start seeing patterns. Certainly the interrelationships are key.

 

http://www.alternativementalhealth.com/art...icles/walsh.htm

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

 

Also here is a great Linus Pauling vitamin site on all the interrelationships between vitamins, e.g. never take folic acid without B12, etc...

 

http://lpi.oregonstate.edu/infocenter/contentnuts.html

 

So Jennifer, I want to thank you for being one step ahead here again, at least on the path I think is important for me to pursue. Thanks a million! You might consider the $40 pyroluria test too. The zinc issues it uncovers could be related to the zinc issues with the MT protein.

For the rest of you, the links say things like Inositol is good for undermethylated people, but bad for overmethylated people. There are histamine tests you can do to determine this. It goes back to my view that one supplement program does not fit all.

 

Also, he suggests that mercury detox is temporary--you need to remedy the antioxidant situation or the symptoms and issues will return. Apparently weak MT proteins leave you susceptible to yeast.

 

I will leave it to you to read this and reach your own conclusions. It there is a ton here. Be sure to click on not only a-e, but all the letters....

 

 

Claire

 

ps just posting general knowledge.

[Guest NancyE]

Hi Claire,

 

Nice to see you posting! Thanks for the great links. I've read a lot of this before, but it's nice to have it in one spot to refer to. My son was tested at Pfeiffer for histamine, etc., to see if he's over- or undermethylated. It'll be another 2 or 3 weeks before we get all the results. I'm so hoping they'll provide some good information on where to go from here.

 

School starts next week. My younger boy must have caught a virus on vacation and passed it along to my older guy this week. Nothing horrible, but a lot more crabbiness and meltdowns in general from not feeling great and being inside too much. I think getting back to school will be good for all of us!

 

Hope all is going well with you. Take care.

 

Nancy

[Claire]

Hi NancyE,

 

So that's what your son was getting tested for--so sorry if I missed that, I thought it was mostly the pyroluria. I didn't realize that you were that far along with investigating this area, great! Then I owe you a thanks also--please let us know what you find out, and what specific treatment they give for MT protein if they do this (I believe it is zinc, then amino acids). IThere is way too much reading here. I am really interested to see if there is an MT protein/pyroluria connection since both involve zinc. I would love to see stats on that. I haven't seen that discussed yet--but I haven't gotten through all of the material.

 

I am a little bit jealous that you are so close to the clinic. I hope the diagnostic protocols are honed enough that my DAN doctor can go through this with us.

 

Sorry that your older son isn't in the best mood. I sure hope it improves quickly.

 

Claire

[Guest NancyE]

THanks Claire,

 

He's doing ok - we're used to the ups and downs! We all went for a bike ride and played at the school playground this morning, so they had fun.

 

Along with the histamine levels, my son was tested for a number of metals, pyroluria, a complete blood workup, and thyroid. I'm not sure what some of the things listed on the receipt stand for, but I think those are the biggies.

 

I mentioned on another thread that they don't routinely test everyone for yeast right off the bat, which surprised me a little. I can get the test done, but we decided to wait a little bit to spread out the expense a little.

 

They also don't do the spectracell test your doctor did. I keep meaning to go back to your old posts to get more information on this test and then ask them about it when we discuss the first results. I'm not sure if some of the information might show up in other tests they do.

 

Anyway, I'll let you know what we find out. I've always suspected mercury and pyroluria, so I'm VERY curious.

 

Nancy

[Jennifer]

Claire,

 

The Pfeiffer institute offers outreach clinics, we will be taking our son to the one in Northern California in October. They have several ones throughout the year to accomodate those that don't live so close to their clinic.

 

You can call the clinic and get a complete info packet and see if they still have any openings for the one this fall. The next one in in Anaheim CA, in February.

 

Keep us posted.

 

Jennifer

[Guest Kimberly]

Hi,

I am new to your cite. My daughter is 10 and has several tics. You guys have been very helpful. I am puzzled - yesterday I e-mailed Pfieffer clinic to get started on the appointment and they said they did not treat children with TS. Could someone please explain this?

 

Also, I started my daughter on a calcium/mag/zinc combination and she seems to be worse. I haven't added the mag. taurate yet. Any suggestions? This summer for 3 months I had her on Bonnie's supplements. She did not do well and definitely had a reaction to the fish oil.

 

Taking her off tv did help with the vocal tics!

Thanks,

Kimberly

[Guest NancyE]

Hi Kimberly,

 

We went to Pfeiffer recently and they also cautioned me that they don't treat specifically for TS. Although my son has tics, he's done well on supplements and they are very minor now and not a big concern. We went more for anxiety and mood issues. I had read an article in Latitudes, I believe, where the doctors at Pfeiffer said that they just don't have as good a track record specifically treating TS as they do with autism and the related issues. Some TS patients have done very well, and some haven't. THerefore, they don't want to offer false hope and have parents spend a lot of money if they don't feel the results are consistently positive.

 

I personally think TS is a very individual thing, and there are so many different triggers that it is hard to develop a generic protocol for testing and treatment. I think much of what Pfeiffer tests for could lead to answers in some people with TS, but there are others who would need to dig deeper. Unfortunately, there's just not a one-size-fits-all treatment plan, you know? Just from reading this forum you can see how differently people react to things that help other people.

 

I suppose it's good that Pfeiffer is up front about it, but I can understand it's frustrating. I would hope that some day they could devote more research and time to trying to identify more factors involved in TS and perhaps individualized treatment options. In the meantime, if you've been reading this forum you've probably read lots of information that may be helpful. Also, can someone please pop in with the link for the list of doctors who test and treat TS and related conditions? Thanks - I'm such a computer dork!

 

Good luck Kimberly.

[Guest Kimberly]

NancyE

Thank you, I am glad that Pfeiffer is upfront. I am still going to try to get her in. It sounds like from reading the forums that most people have been pleased with the clinic. At this point, I am willing to search all avenues.

Kimberly

[Jennifer]

Kimberly,

 

In addition to the good info. from NancyE. something to consider is that a diagnosis may not always be correct. Our son was diagnosed with TS by a neurologist about 2 years ago, but I have since realized that his tics were part of a much bigger picture, I personally feel that he is on the spectrum. When interviewing doctors a few months ago from the DAN list I had more than one doctor tell me that many children on the spectrum suffer from tics, but do not have TS and that it was important to have the proper diagnosis.

 

Many of the stories on this forum are so similar, we don't just deal with tics with our kids, but moods, some OCD, fears, meltdowns and allergies etc.

 

I think that Pfeiffer is definately worth a try.

 

Also, you mentioned that your child was worse on supplements. When we first started all the suplements 2 years ago our son got much worse too. It was explained to me that the nervous system is in such an excited state that any new supplement can aggravate things at first and as the body corrects the imbalances things can actually get worse before they get better. As far as fish oil goes we found that if we use it along with flax oil he does great, infact Dr.'s are realizing that some children don't do well with straight omega 3's they need to be given with a combo of omega 6. A word of caution about flax oil it needs to be cold pressed and processed in an oxygen free environment or the oil becomes rancid destroying the fatty acid chain. We order our oil from Body Bio. It is only good for 6 weeks, that is how fresh it is.

 

God Luck!!

 

Jennifer

[Claire]

Kimberly,

 

The Pfeiffer link I posted commented that some kids with pyroluria do WORSE with fish oil. We have definitely heard this anecdotally here. They are often deficient in Omega 6's and then the Omega 3's compete for the zinc and B6 that is in scarce supply. Also, light sensitivity can be a symptom of Pyroluria, and light flicker (TV!) is a form of light sensitivity. I recommend getting the $40 pyroluria test (you don't have to go to Pfeiffer just to order the test). If it is positive, talk to Pfeiffer about a PUFA or EFA test for Omega3's and Omega6's.

 

Our DAN doctor considers tics on the ASD (Autism spectrum disorder) list, which is addressed by the DAN protocol and Pfeiffer. Even so, tics are rarely if ever mentioned--it just hasn't been studied from this angle, and we are breaking ground here. Certainly since this board started looking at it from the ASD/immune issues angle, many of our regulars have discovered that indeed our kids have the same underlying issues as ASD kids based on testing. For some of us it is too early to see results, others have had initial success. I am sure this isn't the cause for everyone, just like TV isn't a trigger for everyone, nor are artificial colors and flavors. But, I suspect is that a large number will find substantial improvement.

 

And as both Jennifer and NancyE said, there are often several other issues, where tics are really just a visible indicator that something else is going on. I think the TS label is misused/overused for many kids. For example ADHD kids often get tics, and they are considered ASD and treated by Pfeiffer.

 

Good luck, and I really hope every who is able to do so posts the tests given, the results and the impact of treatment. We have a chance to make a difference here. I will try to keep posting my research, and the general information that I uncover.

 

Claire

[Guest Guest]

Hi,

 

I have a 12 year old daughter whose TS tics are terrible for her. Now they are mostly vocal - coughing, throat clearing etc. I went to a holistic Dr. for some blood/urine/hair analysis - haven't heard anything yet. He prescribed Fish Oil-Omega 3, EPH-DHA Extra Stength, Flax Seed, Nutrizyme multivitamin and minerals with enzymes, as well as Black Currant Oil. I believe one of these has made her tics worse. I am going to take her to a regular allergist who is going to test for food allergies.

 

Is this the correct person to take her too? What is a DAN doctor? Can anybody give us any suggestions? She is currently taking Clonidine 0.1 and 1/2 at bedtime to aid in her sleep, as sleep never comes easy for her. She is also taking 5 mg. of Prozac in the a.m.

 

I noticed an IMMEDIATE increase in her vocal tics after giving her all the meds prescribed by the holistice Dr. We are TERRIFIED to try any one of these again.

 

Any suggestions would be so very helpful and appreicated. I do not know what to do for her any more. We have been to SEVERAL doctors and none seem to be able to help her and she is getting frustrated with them (rightfully so). Will the allergist also be able to determine if there are any environmental factors involved? We live close to a closed steel mill and wondering if that may play a part?

Thanks to all, this is a wonderful forum for those of us with these truly SPECIAL children!

 

Sherry

[Spring]

Hi Sherry,

 

One of the lessons that I have learned is not to give all new stuff at the same time. You may want to stop everything and reintroduce them one at a time, i.e., introducing a new one every 3 to 4 days, and start with low dosage and gradually increase the dosage if there is no symptom increasing. For my son, flax seed oil was the one set him off. But, as you know, each person is different.

 

You may get DAN doctor information from Sheila Rogers' post on the top of this forum. I also included the link below:

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

Jean