New treatment plan with 23 and Me test results

[Rachel]

I finally got my son's 23 and me test results back. First of all, thanks LLM for your post for 23 and ME. This has helped so much. The genes that showed up really do influence the symptoms that my son is having. I will be sharing these results with the cardiologist because he will be open to this. He will be more than willing to do testing to check for sulfite and ammonia levels in the body.

 

My son did not have any SHMT or ACAT, However, he did have 4 hetrozygous CBS genes show up and 4 Hetrozygous MTHFR genes. As for Homzygous genes, this showed up in MAO AR297R, MTRR A66G, NOS 3, CETP,MEFV,TNF, and RAD 50. I am ready to switch off some of these genes to see if I can get rid of some of these horrible symptoms. Of course I know that I will have to go slow and get the CBS problems corrected first.

 

His illness and inflammation problems are beginning to make more sense. I have ordered urine test strips to check for sulfite levels.

 

Has anyone found a home test kit to check for ammonia levels?

 

I will be monitoring sulfites weekly and start working harder with my son's diet. I have decided to take out cow's milk first. Does anyone have a favorite milk subsitute and a easy way to lower sulfites. Wish I and everyone else on the forum had an "Easy Button" for all these immune related illness.

 

Edit: My son also has 3 COMT genes that are -/-. My son needs methyl B-12. Gotta get his CBS corrected first or his body is not going to get what it needs to be able to function better. His body is very senstivity to pain and he is a slow metbolizer. He is +/+ for CYP2D6 S486T and +/- for CYP1A2 164A>C.

Edited April 16, 2014 by rachel

[3bmom]

Rachel, I am so excited you have gotten some answers. I just got our kits and will be sending them in ASAP. The info from heart fixer is a bit overwhelming but also fascinating at the same time. I think I will find some CBS issues too since I lose feeling in my legs if I take a sulfa drug. I find it confusing though since I feel so much better on a high protein diet.

 

We don't have nut issues so we drink unsweetened almond milk. The chocolate is delicious especially in a smoothie. Just be careful with sugar.

 

We also did rice milk but found out there are high amounts of arsenic in rice. Too much soy makes me nervous with hormones and a boy, not to mention most is GMO. After taste testing many, many ice creams we do love Trader Joe's brand with Organic Soy. Makes a good root beer float for a treat. Hemp is also good. A mom I know combines it with fruit, flax seed and freezes to make ice cream. Google recipes, lots are out there.

 

The post I did today on Neurology and Inflammation explains that you don't have to have an allergy to Dairy and Gluten to have neurological effects. It explains so much!

 

So glad for you! Keep us posted.

[Rachel]

My son did a urine test to check for sulfate levels. It was above 1200mgs. I have removed all dairy products to get his protein levels down. I will have him test every 4 - 7 days to see if this is helping. If not then I'll start looking at his diet. Since his testing showed the +/- CBS and +/- BHMT, I will be trying to lower sulfate levels first. I am going to see if our doctor will run an offical test to check for Sulfates and Ammonia levels. I found a really interesting website on Sufates and how to bring the levels down with diet. Thought I would share. Happy reading.

 

http://www.learningtarget.com/nosulfites/book.htm#Top

[Rachel]

I decided to go ahead and start my son on B-Right Complex (Jarrow Formula). It contains all the B complex vitamins but has 100mcg of Methylcobalamin, 10mg of p5p and 400mcg of folic acid as Quatrefolic. His moods have been really good considering that he has strep and so far it has not set off his vocal tic. I will try this for a couple of weeks before I add another methyl B-12 supplement. My son does get Methyl-B 12 shot every 3-4 days, so I'm really wondering how adding this supplement will affect his body on those days.

[Rachel]

Hi Everyone,

 

I wanted to share some more resources that I have found online. I don't know if anyone has heard of Dr. Myhill. She works with CFS patients and also helps them with methylation problems. She has a basic jump start program to get the methylation process started but tells you to start low and slow. Her old book is online. I will post it and her lastest article on Methylation. She also mentions Dr. Amy in her article and to check out her sites as well. I have just started my son on one new supplement, B-Right. In another week or two, I will start him on 500mcg of Methycobalamin once a day and then gradually up the dosage week by week. I will not be giving it on days that my son is taking the methyl-B 12 shot. Eventually I will add in the Phosphatidyl Serine. Dr. Myhill does have a new book out and I will also be order it to read. Here is the article and her old book. Happy reading.

 

http://drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle

 

http://www.thyroidhelp.org/ViP/Diagnosing%20And%20Treating%20Chronic%20Fatigue%20Syndrome%20-%20Dr%20Myhill.pdf

[TeamTyrion]

Hi rachel,

Just wanted to clarify...you mentioned your son has comt issues? I was under the impression that we had to avoid methyl groups when there are comt issues, and to use hydroxy b12 instead of methyl b12. Perhaps I am missing something?

 

My son also has comt issues and so I have been avoiding methyl b12, although I would love to use it since it is the best b12 for absorption. Please let me know what I am missing. Thanks!

[Rachel]

On the COMT my son is -/-. From reading heartfixer, I understood that my son needed methyl doners. I will go back and read again. My son does not have any issues with SOUX. I understood if you had those issues that you would need to use the hydroxy b-12.

 

LLM and some others on the post might be able to clarify this some more. This does seem to be a little confusing to me also.

 

I am seeing improvement with my son's tremors and shaking. They are much less in the mornings (almost gone) since I started giving the B-Right supplement after breakfast. I'm wondering if this has something to do with the P5P (B6). Later in the the day around 3:00pm, I see a noticable change (the tremors are worse), so something is working on this end of the deal. If I see this again today, I am going to give another one after lunch and see what happens.

 

Edit

 

My son also has a homozygous MTRR A66G and hetrozygous VDR Bsm and VDR Taq. I see improvement with my son's fatigue levels on days that he takes his methyl B-12 shots. I really think my son may need both kinds of B-12 but I am leaning more towards the methyl-B 12. His BHMT 02 is hetrozygous the rest of these are -/-.

Edited April 22, 2014 by rachel

[TeamTyrion]

I apologize rachel...I think I read that wrong, because if your son is -/- with comt that means he doesn't have issues right? My son is hetero (+/-) with a few comt snps which means that he does have issues, and is therefore not going to tolerate methyl groups very well.

 

Sorry about the confusion!

[LNN]

There is no single gene that tells you your tolerance or need for methyl groups. You cannot say "COMT +/-" means someone should avoid methyl donors. Nothing about methylation is that simple. There are over 30 genes in the cycles and they all affect one another. But the ones most telling are the inter-relationships and combos of mutations between COMT, VDR Taq, MTHFR and to a lesser extent, MAO. Heartfixer spends a fair amount of ink going over the various combos of COMT and VDR Taq because they affect each other to such a great extent.

 

Beyond methyl groups, you also need to focus on the rates at which these genes (and their assorted mutations) degrade neurotransmitters such as serotonin, dopamine and epinephrine.

 

Everyone in my family is COMT +/-. Two do really well on methylB12 and methyl donors and two need hydroxyB12 and need more niacin and other users. You need to look at interplay and also do a fair amount of experimenting. It ends up being very individual.

[TeamTyrion]

"Beyond methyl groups, you also need to focus on the rates at which these genes (and their assorted mutations) degrade neurotransmitters such as serotonin, dopamine and epinephrine."

 

llm - how does one figure that out? That sounds pretty important to know.

 

It is the Heartfixer site where I found out that my son would likely be intolerant to methyl groups, given his comt and vdr taq status (he is comt +/- and vdr -/-) which according to heartfixer means "Lowest need for and tolerance to methyl group donors."

 

However, I'm curious about your experiences - for the two in your family doing well on methylB12, are they also vdr -/-?

 

Perhaps I should start adding some methylB12 into my son's rotation for experimentation. What is the niacin for? Is it to mop up extra methyl donors?

Edited April 23, 2014 by teamtyrion

[Rachel]

Today was so much better. I added another B Right supplement at noon and took away the old B- complex. I will do this for the rest of the week and see if his tremors and shaking will go totally away.

 

BTW my son's sufates levels 4 days ago were over 1200mgs. Today they were just over 800mgs. He will not be drinking any more cow's milk for awhile. His favorite is almond milk and I am cooking with it.

 

Our cardiologist called today with some other news about heart antibodies and my son's current strep infection. It's not normal to get strep infections on antibiotics. He has also been talking to some doctors about my son's condition. He has decided that he wants to do a LD of IVIG to boost his immune system. He has already contacted our insurance and it's been APPROVED already. I'm kinda in shock right now. My son is supposed to have the treatment this coming Friday.