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Hello everyone!

 

Please excuse my ignorance, however I have seen alot of topics regarding MTHFR and really would like someone to comment on this matter in layman terms. Is there any correlation with PANDAS? Should one have their child tested for it? The only thing that I know that is definite in our situation is our DD5 has been officially diagnosed by 2 PANDAS docs, had immune deficiencies show up on labwork as well as low Vit D levels. She was born premature, was colicky as a baby, had frequent allergy/sinus/colds/ear infections throughout her life and unexplained vomiting (since a baby) and weight gain (within the past 2 years) and ezcema. One of the PANDAS docs thinks that the vomiting/weight gain are symptoms related to PANDAS, a GI Specialist thinks that it is an acid reflux issue or Cyclic Vomiting Syndrome. We are taking her to Dr. B, in August, to see if there are any underlying allergy/immune issues that need to be addressed and now this MTHFR has me wondering if that would fit it somewhere. If anyone could chime in, I would greatly appreciate information on it. Thanks :)

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I have posted about this before but will post again :)

I had asked dr T about it and he told me not to worry about it. I decided to do it anyway(not leaving any stone unturned any more). Turns out she is Positive for one copy of each. (the 2 they mostly test for,sorry too tired to remember exactly what they are called but someone will chime in--LLM??Nancy?? (they are much more knowledgeable.)

Anyway--I circled back with Dr T, told him lots of PANDAS kids are showing this. He said he going to start adding it to the list.

We are meeting with the genetics team at MGH as well as an Integrative (Dr Greenblatt) in a few weeks. I will update then.

 

Getting my son tested now too. He is not PANDAS but DOES have Auto-Immune ( Celiac)

 

Who are your PANDAS docs?

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I can try to explain as simply as I can and it's connection to PANDAS/PANS but it won't be short. I am off for a couple of appointments and can write something this afternoon. If Laura or anyone else wants to take a crack at it, please do. If not, I'll do so when I get back.

Edited by NancyD
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Hello everyone!

 

Please excuse my ignorance, however I have seen alot of topics regarding MTHFR and really would like someone to comment on this matter in layman terms. Is there any correlation with PANDAS? Should one have their child tested for it? The only thing that I know that is definite in our situation is our DD5 has been officially diagnosed by 2 PANDAS docs, had immune deficiencies show up on labwork as well as low Vit D levels. She was born premature, was colicky as a baby, had frequent allergy/sinus/colds/ear infections throughout her life and unexplained vomiting (since a baby) and weight gain (within the past 2 years) and ezcema. One of the PANDAS docs thinks that the vomiting/weight gain are symptoms related to PANDAS, a GI Specialist thinks that it is an acid reflux issue or Cyclic Vomiting Syndrome. We are taking her to Dr. B, in August, to see if there are any underlying allergy/immune issues that need to be addressed and now this MTHFR has me wondering if that would fit it somewhere. If anyone could chime in, I would greatly appreciate information on it. Thanks :)

 

Totally off topic, and you didn't ask, but have you ruled out metabolic disorders as part of the puzzle? Our doc kept saying my son's symptoms and behaviours sounded so much like a metabolic disorder, except that he was not vomitting. Your comments about vomitting just made me recall that. FWIW

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Totally off topic, and you didn't ask, but have you ruled out metabolic disorders as part of the puzzle? Our doc kept saying my son's symptoms and behaviours sounded so much like a metabolic disorder, except that he was not vomitting. Your comments about vomitting just made me recall that. FWIW

 

She had the thyroid panels done, but nothing more than that for a metabolic panel. I will add that to my list of testing that I want done to rule out any underlying conditions. Dr. K said that he believes our daughter developed PANDAS as a toddler and that the vomiting would be a symptom. We have an appointment with Dr. B to have him look into the issues that showed up on her bloodwork and I will address the metabolic issue with him to see if he can rule that out or refer us to a doc that will look into it. Thank you :)

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I posted this thread a few days ago - it's a link to a very good overview of why MTHFR is important for those with mood issues/anxiety.

http://www.latitudes.org/forums/index.php?showtopic=17664

 

In a very basic nutshell, your body goes through a process called methylation. It happens thousands of times per second. You can think of it as a sort of metabolism - it's the way your body takes nutrients (vitamins/minerals/amino acids) and converts them into specific "chemicals" that your body needs. For example, your body takes in folate (vitamin B9) and methylates/metabolizes it into methylfolate. Methylfolate does two things - it helps your body make glutathione and it helps your body make seratonin.

 

The gene that controls the methylation of folate into methylfolate is your MTHFR gene. Approximately 12-40% of the population is estimated to have a mutation on this gene (depending on your ethnicity). There can be hundreds of possible mutations but the two most studied are called C677 and A1298.

 

If you have the C677 mutation, your body cannot do a good job converting folate (found in foods, fortified cereals, multivitamins) into methylfolate. Your body can't use raw folate. It has to be converted into methylfolate first. If you have one mutation of C677 (called heterozygous), your body is only about 40% efficient at doing this conversion. It's like having one hand tied behind your back. If you have two mutations of C677 (called homozygous and means both parents carry this mutation) then your body is only about 10% efficient (two hands tied behind your back). If you can't methylate folate into methylfolate, you will be deficient in both seratonin and in glutathione.

 

Pandas kids care about seratonin because a seratonin deficiency leads to anxiety, OCD and can effect GI function. But the MTHFR is not exclusive to Pandas. It effects the entire population. But the impact on seratonin is important to Pandas kids.

 

If you have the C677 mutation, you can help your body by supplementing with methylfolate. This way, your body gets what it needs even tho it isn't capable of making the stuff itself. You can then make sufficient seratonin (assuming you don't have genetic mutations on the other genes that are involved in methylation). You can then also make more glutathione, which is critical in helping your body remove damaged cells and toxins (this is one reason why an MTHFR C677 mutation is also linked to heart disease, stroke, macular degeneration, certain cancers and leukemia).

 

If you have an A1298 mutation on your MTHFR gene, this effects your body's ability to make BH4, which plays a role in making seratonin and dopamine. Again, these things are important to Pandas kids but also important to everyone. You can help the body work around this mutation by supplementing. TMG/DMG is one supplement I've seen suggested for this mutation, but there is less literature on this mutation. People with this mutation are likely to have additional gut dysfunction.

 

So to recap, there are many genes that play a role in how your body methylates (converts) nutrients. One of the key players is your MTHFR gene. If you have a mutation (Pandas or not), you are more likely to have issues with anxiety, mood, fatigue, a family history/risk of heart disease, stroke, cancer, macular degeneration and a reduced ability to rid your body of toxins and damaged cells.

 

Some of us have found that if this gene mutation is present, and we help the body gets what it needs but can't make on its own by giving specific supplements, our kids improve in terms of moods, anxiety, energy and/or GI issues. It is only one piece of the puzzle. Treating MTHFR mutations will not "cure" Pandas. Many people without Pandas also have this mutation. But working around this mutation will address a root cause of some issues in a way that antibiotics, IVIG, steroids or plasmapheresis cannot touch.

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Just to add to the connection between MTHFR and PANDAS/PANS...

 

As Laura stated, if the methylation cycle is not working properly, folate will not convert to methylfolate. If folate is sitting around unused it can break down into glutamate (an amino acid produced by the body that plays an essential role in metabolism; it is the main component of many proteins and present in most tissues). High levels of glutamate may contribute to obsessive compulsive disorders (OCD).

 

And as Laura indicated, the methylation cycle is responsible for the primary source of glutathione production in the body. Glutathione is the most potent and abundant antioxidant in our bodies, critical for protecting cells and the immune system, boosting the blood, and neutralizing toxins in the body. People with MTHFR abnormalities usually have low glutathione levels, which makes them more susceptible to stress and less tolerant to toxins.

 

Streptococcal infections flourish in a high glutamate, low glutathione environment.

http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-3/

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Just to add to the connection between MTHFR and PANDAS/PANS...

 

As Laura stated, if the methylation cycle is not working properly, folate will not convert to methylfolate. If folate is sitting around unused it can break down into glutamate (an amino acid produced by the body that plays an essential role in metabolism; it is the main component of many proteins and present in most tissues). High levels of glutamate may contribute to obsessive compulsive disorders (OCD).

 

And as Laura indicated, the methylation cycle is responsible for the primary source of glutathione production in the body. Glutathione is the most potent and abundant antioxidant in our bodies, critical for protecting cells and the immune system, boosting the blood, and neutralizing toxins in the body. People with MTHFR abnormalities usually have low glutathione levels, which makes them more susceptible to stress and less tolerant to toxins.

 

Streptococcal infections flourish in a high glutamate, low glutathione environment.

http://www.dramyyask...very/chapter-3/

 

So Nancy, you are saying that it is not only important to supplement methylfolate but also to avoid folic acid, yes? All those multi-vitamins and fortified foods, right? I know I've seen that mentioned.

 

Could you kindly explain how each of the B vitamins fits in this picture for the C677t mutation?

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I would also add that when the methylation cycle is not functioning properly tryptophan cannot be broken down into melatonin and you get sleep issues. We do not know if my DS has a MTHFR gene or not (never been tested). We do know his methylation cycle was not functioning properly. During testing we found out he has/had very little tryptophan. No wonder he can't fall asleep w/ out melatonin. Sleep issues are very prevalent in PANDAS kids.

 

This is just one more example of why a properly functioning methylation cycle is so very important.

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Ladies, thanks so much for the education!! Do you know anything about this Dr. Ben? http://mthfr.net/mth...%28MTHFR.Net%29 Do you agree with his findings?

 

MTHFR and Methylation Presentation – PDF Version

 

Posted: 05 Jun 2012 05:06 PM PDT

 

Many physicians have requested copies of various slides from my MTHFR and Methylation Presentation. I have accomplished this finally. Please respect my work and cite me as author: Benjamin Lynch, ND of www.MTHFR.Net Education is critical here – for all of us. You may share as little or as much with your physician as [...]

Edited by minimaxwell
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I have read Dr. Lynch's site and I have found it helpful. From what I can tell, his discussion seems to agree with Yasko and some of the others who have a good grasp of methylation. I am very leary of those who make blanket statements and generalizations. As we all know, so much of this is individualized.

 

Dedee

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I have nothing of value to add, but had to share with someone that I cannot read this acronym without filling in a few vowels...

 

:lol:

 

Right there with you! In fact, that's the way I personally refer to it, in my head. :D

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I have nothing of value to add, but had to share with someone that I cannot read this acronym without filling in a few vowels...

 

:lol:

 

Right there with you! In fact, that's the way I personally refer to it, in my head. :D

 

Now that you mention it, I do too, without even thinking about it. Someone today said "M-T-H-F-R" - each letter separately - and I had to stop and think - oh yeah, that's how you have to say it in mixed company." In my head, it's the other word.

 

DeeDee - my exact thoughts.

Edited by LLM
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