Methylation

[LNN]

Yes, please let me know. Pfeiffer says they can test, but ka-ching! Like my LLMD, but in 45 minutes, hard to focus on chelation, detox, abx, KPU...and methylation wasn't even on my radar last week when we saw him. He obviously understands methylation but doesn't seem focused on it. The "benefit" of having a second sick kid is that we see him again next week for her and I'll be asking for testing. Just not sure what's available and what sort of detail/direction it will give us. So please let me know what comes of tomorrow!

[LNN]

IDK Christianmom - sorta does sound like rocket science to me...

http://planetthrive.com/2009/06/glutathione-depletion%E2%80%94methylation-cycle-block-hypothesis-the-customized-approach/

 

Different patients have different genetic polymorphisms in the enzymes and other proteins that impact the methylation cycle and the associated biochemical cycles and pathways. Some of these polymorphisms will have important impacts on the choice of specific parts of the treatment program. In using this more complicated treatment approach, it will be necessary to characterize the polymorphisms before it will be possible to make some of the decisions about selection of particular treatment aspects.

 

 

The results from this genetic panel require interpretation. One can either study Dr. Yasko’s materials to gain her insights on interpreting the results in general, or order her interpretation of the particular results, which is called a Genetic Analysis Report or GAR. The GAR is a computer-generated report with some general material that applies to all the cases, and specific sections that are chosen in response to the particular genetic polymorphisms found in the individual patient. As such, the continuity of the discussion in the GAR is not what would be found in a report written from scratch for each particular patient, and it may have to be read more than once to make all the connections in one’s mind, but the material contained is specific to the particular genetic panel results, and Dr. Yasko updates the material used in generating the GARs as more is learned.

 

 

As discussed in Van Konynenburg’s paper, people who have been ill for an extended period of time (many months to many years) will have accumulated significant infections and significant body burdens of toxins, because both their cell-mediated immune response and their detox system will have been dysfunctional during this time. When the methylation cycle is then restarted, both the immune system and the detox system will begin to function better. When they do, pathogens and infected cells will begin to die off at higher rates, and toxins will be mobilized. The resulting detoxification will be unpleasant, and may even be intolerable. If the patient has not been prepared in certain ways, discussed below, she or he may not be willing to continue this and may drop out of the treatment program.

 

See the article for a full discussion.

[LNN]

 

Now it's only a matter of finding a blockage....

[Bill]

To make the game more fum, how's this twist - so I add stuff and he seems fine, maybe even better. But then after a few weeks, get gets worse. Is it because now there's too much in the system? Or is it because we've enhanced the methylation process and the body is now working on things like chronic infection/detox and it's that "herx" kind of reaction? How the heck are you supposed to know?

 

Just curious, do you have a particular method for tracking symptoms to changes? I track my son's OCD/anxiety/behavior based on 1-9 scales I came up with. In the beginning of treatment, his scores were all over the place. As time has gone on, they are much more consistent. In both extremes, it was/is difficult to correlate changes to any specific change in medicine or supplements. Then again, my son seems to be an odd ball here in that he does not seem to react much to anything (illness, new ABX, supplements, ....).

 

Just wondering who else tries to document and track changes in ABX/supplements with symptoms over the long term. Maybe you (someone) has a better way of doing this?

 

bill

[LNN]

I do track symptoms - have 2 yrs of charts...I track my daughter daily and my son weekly (son's just got too long to fit on one page, so I consolidated the info). I have 5-7 symptoms that I rate on a 1-10 scale and make a stacked graph. Good weeks have short stacks and bad ones have high stacks.

 

Below the data entry section, I make notes to myself about what things were relevant (medications, illness, etc).

 

But despite my charting, cause/effect aren't always clear.

[Suzan]

I can't believe it but I found a doctor in my town who it sounds like he could be a good resource for us. I am going in 2 weeks for a quick consultation to see if we should work with him.

 

Their web site says:

 

"Our alternative approach to treatment to patient with neuro-degenerative disorders are designed to improve methylation and detoxification pathways. ...... philosophy is to remove toxins, irritatiing foods, and germs by replenishing good flora, nutrients and anti-glutamates. We perform major tests such as neurotransmitter, immune profiling,hormone and toxin screenings. "

 

They also use Kinesiology, chiropractic and other physical techniques. I'm afraid this is going to cost me a fortune but if it seems we are on the right path, it's the place to be.

 

I'll ask him about his experience with KPU, lyme, pandas and see what he has to say about methylation and how it could all relate to what we are going through.

 

LLM, awesome diagram. More support for having some professional help from someone who knows about this stuff!

 

Susan

[LNN]

Here's a blog about someone who had another disorder (premenstrual dysmorohic disorder - PMDD) who had one of those "AHA" moments when learning about methylation.

Associated with under-methylation, which results in low levels of important neurotransmitters such as serotonin, dopamine and norepinephrine. Treatment focuses on the use of antifolates such as calcium, methionine, SAMe, magnesium, zinc, TMG, omega-3 essential oils, B6, inositol, and A, C and E... Choline is anti-dopaminergic and often makes undermethylated patients worse. Also bad are DMAE, copper and folic acid. Three to six months of nutrient therapy are necessary to correct this chemical imbalance.

 

One thing that is absolutely certain is that methionine and/or SAMe usually harm low-histamine (overmethylated persons)..... but are wonderful for high-histamine (undermethylated) persons. The reverse is true for histadelic (undermethylated) persons, who thrive on methionine, SAMe, Ca and Mg..... but get much worse if they take folates & B-12 which can increase methyl trapping.

 

Nearly all severely undermethylated persons have low serotonin levels and present with a history of depression, internal anxiety, and OCD. Many have a history of perfectionism and high accomplishment in the early years.

 

We have found that nearly all anorexic and/or bulemic patients are very undermethylated, low serotonin persons. Most of then respond very well, albeit slowly, to aggressive doses of methionine, Vitamin B-6, and calcium. A positive response can usually be achieved more rapidly with SAMe...

...In my experience, most anorexics are perfectionistic, obsessive-compulsive, high-histamine, low serotonin persons. Most have a history of high accomplishment in school and were never discipline problems.

 

These are excerpts - full blog is here:

http://pmddisreal.blogspot.com/2008/09/sam-e-to-methylation-to-copper-overload.html

 

She cites this article by Dr Walsh, an early advocate/investigator with the Pfeiffer Institute, the same article Suzan posted on the Pandas forum (I think - getting my threads confused) http://www.alternativementalhealth.com/articles/walsh.htm

 

A few months ago, I had stumbled onto Safe Harbor and this article and it only had mild interest to me. Now it means so much more. I always get excited when something comes across my path twice. Corny, but it feels like serendipity, or fate, or a igher power, hitting me over the head. Like - "Dear Laura, tried to give you this info but you ignored it. So here it is again, with a slap upside your head to make you listen this time". Ironically, I had come across the man who is now our LLMD three years ago, when I first started looking for a Pandas doctor. So last year, when someone put his name in front of me again (thanks JS) it gave me that "fate" feeling. I feel the same way about methylation (thanks S&S for mentioning it months ago - now I'm listening).

 

Suzan - note the DMAE above - does that strike a chord?

 

Also had a very strange experience yesterday. DD has been ok - her C3d has come down from 90s in January to 20s in August, so the combo abx seem to be helping. We weaned her off pepcid (which coincidentally lowers histamine) and she's gaining weight, fewer eating issues (still occasional GERD). But she continues to have low level anxiety and cruel intrusive thoughts that strike at dinner time and bedtime. For whatever reason, I was crawling out of my skin for the past two days with itchiness, hives...so I dug out the quercetin. On a lark, I gave her 800 mg quercetin+bromelein after school, since she said her throat hurt a little (assumed it was mold/allergy thing from rain & falling leaves). Last night - NO OCD. Weird. Hard to think such a small, one time dose of quercetin would be behind it. But it was a strange coincidence. Will try another experiment tonight. I know it can't be that easy, but...?

[Suzan]

I gave dd10 the DMAE by accident yesterday morning (forgot to take it out of her weekly pills) so the test starts today. Last night she was lying on the floor unable to get up and writhing around and crying "help me, help me" but would not get up or accept any help (you know the drill), really bonkers for about 30 minutes. Her sister popped her out of it by a game of Simon Says, thank you dd8

 

Interesting about the quercitin. I know allergies are really bad now with the Fall changes. Maybe that is part of what is going on with dd10. I've been giving charcoal as soon as she gets home from school to give it away from the other supplements. Maybe today I'll try quercitin and see what happens. Did you find that there was any worsening of symptoms after weaning off the pepcid? dd10 has done well on pepcid in the past (pre-lyme diagnosis).

 

Susan

[LNN]

We didn't see any negatives from dropping the pepcid. We did it slowly - half a pill for two weeks, then half a pill every other day..

I hope the new doc pands out - an appt in only two weeks? What a concept!

[jjl]

Laura,

 

Why do you always pick the most complicated subjects to discuss First biofilms, now this!

 

I have the unfortunate pleasure of trying to treat two boys with asd over the last 10 yrs and with autism you venture down all these roads. Hard to believe there is something more complicated to understand than biofilms, but you win for picking the one thing that I believe is even more complicated.

 

The best person I know to describe metabolic pathways is Dr Amy Yasko. She has been doing genetic testing for yrs for asd kids like ours and she covers all of the metabolic pathways including the methylation pathway. Amy has a unique treatment plan also that is "very involved". We did the testing yrs ago and I really got into the whole pathway discussion. The genetic testing shows you which pathways are blocked and she tells you how to detour around the roadblocks. Here is a link to her site. If you think you have metabolic pathway issues, it may be worth looking into her testing which I believe is also on this site. It is not cheap, but at least you would know more about your child's metabolic roadblocks.

 

http://www.dramyyasko.com/diagrams-listing/

 

The diagrams are overwhelming at first, but Amy breaks each cycle down and explains them in her literature. Your really have to be committed to looking into this because it is a very large and difficult area to understand. You could also consider buying one of her books which are linked to autism, but that does not matter because many of the issues are similar to lyme issues.

 

I wish I could explain this in a reply but it is a very widespread discussion. One small example I could give is that our boys have a genetic mutation in the MTHFR area (one of the areas in the cycle diagram). This impacts BH4 (cannot convert BH2 to BH4). This in turn affects dopamine and serotonin levels and the urea cycle. Elevated ammonia needs BH4 to detox (a byproduct of some of these cycle issues is high ammonia production). High ammonia causes symptoms. Ammonia also inhibits metabolism of Butyrates. So, in this case, BH4 and Butyrate supplements would be considered. This is a small example of what genetic testing can tell you and how Dr Yasko can help. autism is more complicated than lyme in many ways, but in many ways they are similar. I view the asd crowd as the canaries in the coal mine.

 

Wish I could help more, but please do take a look at the link. John L

 

PS I have a hard time frequenting this site because we are overloaded at home, so if I do not reply that is why.

 

 

So I've gotten myself into a conversation over on the Pandas board about methylation http://www.latitudes.org/forums/index.php?showtopic=15205 that I think applies to at least Suzan and ChristianMom and others who are dealing with KPU and/or problems with detox or severe herxing.

 

I don't want to bombard the Pandas people with lyme references, but if any of you want to peak over there or help me understand methylation, I'd welcome more brain cells to the project. I so wish I had a brain for chemistry...but I was toward the back of the line when that talent was handed out.

 

Anyway, it's feeling like methylation is so important to things like herxing and detox and mold and the links DUT has posted over there have been really helpful. In light of the recent lyme sensitivities over there, I want to be respectful of the Pandas viewpoint and don't want to hijack their thread. But thought maybe some of you could read the thread and then maybe come back here so we could talk about how it might apply in lymeland.

[sf_mom]

LLM - John points you in a wonderful direction. Our LLMD ascribes to Amy Yasko protocol but this is what he states in Insight To Lyme Treatment

 

Compromised detoxification mechanisms in those with Lyme Disease are sometimes due to methylation pathway defects. To correct this type of problem, I may recommend that my patients do the Amy Yasko protocol and in the meantime, try to get the ammonia out of their bodies, using things like yucca root, BH4 and sometimes RNA Ammonia Support Formula. Rich Van Konynenburg has developed a simplified version of the Yasko protocol that seems to have some clnical utility. I also find that Dr. Richard's plant stem cells (Gemmo therapy) can be remarkable for fixing detoxification problems, but I tend to refer my patients out for this type of treatment.

 

One of the problems with patient who aren't able to detoxify well is that they are nutritionally depleted. Intracellularly, they aren't able to absorb their nutrient (Wendy: my dd and I has very low digestive enzymes). so one of the things I correct this problem is to order a urine and plasma amino acid profile and red blood cell elements to test. I then recommend that they supple their diets with whatever minerals and amino acids that they happen to be deficient in, according to their test results (Wendy: we did not do these particular tests but are on Core for two of three children, hd B-12, hd C.. working towards adding enzymes based on comprehensive stool profiles). Administering IV amino acids and minerals is sometimes necessary. I may also recommend that the take Peltier Electorlytes from Crayhon Research, with is a kind of like glorified Gatorade (Wendy: Ola Loa Sport Energy Electorlytes, Tangerine, kids love it but probably very mild in comparison to what he recommends here), but which works well to replenish some of the cells missing elements. I may also send a patients out for IV nutrition, to receive different Myer's cocktails and such to get them more nutritionally balanced.

 

We have not done MTHFR testing yet with any of our children, nor tested for ammonia levels. Put he has encourage the hd B-12 50,000 mcg per day and the hd C at 2,000 m.g. per day (Ester C Gummies).

 

-Wendy

Edited October 22, 2011 by SF Mom

[LNN]

I have been looking at Yasko's work (that's where the diagram came from). But what sort of success rate? I hear claims that she's quite successful, but JJL - what's your personal experience?

[LNN]

We have not done MTHFR testing yet with any of our children, nor tested for ammonia levels. Put he has encourage the hd B-12 50,000 mcg per day and the hd C at 2,000 m.g. per day (Ester C Gummies).

 

-Wendy

I thought B-12 is for over-methylators. The under-methylators (the ones with OCD, allergies) need B-6 and need to stay away from B-12. Am I mis-understanding or do you suspect your kids are over-methylators?

[jjl]

I have been looking at Yasko's work (that's where the diagram came from). But what sort of success rate? I hear claims that she's quite successful, but JJL - what's your personal experience?

 

Laura, I think she is very bright, but I did not follow her plan which requires numerous RNA formulas. At the time, her genetic testing was new and her RNA formulas were new. Also, it took a while for things to change and the results were mixed. I preferred to take the route of simple detour paths (ie. adding MB12 and folic acid) over her RNA formulas.

 

I understand she has come a long way, but I have been out of touch for a while. Like I said this is a very very large area to understand. It is not like trying an abx or supp. This requires a thorough understanding of the pathways along with genetic testing and an understanding of what needs patched. If you want to jump in the best way is to get the testing and have Dr Yasko give you a GAR. Then you would have a big decision about whether to follow her recommendations to use her RNAs (if she still uses them) or to try other patches. Also, I believe you could just look at specific pathways if you wanted to do it a bit at a time.

 

John L

[sf_mom]

Hopefully I can explain this simply.

 

We've been doing the hd B-12 for about 2 years now. Prior to LLMD. We started the hd B-12 because we were looking at it solely from a gut perspective. We felt resolving the gut issues would solve potentially a life time of continued illness.

 

We've been tracking urine PHs and saliva PHs as a result. Our children's were way off and very acidic. If you can imagine a fish tank when the PH Balance is off... it breeds and harbors bacteria by being too alkaline or too acidic and the fish die. A proper PH Balance of a fish tank doesn't allow the bacteria to breed and allows the fish to thrive. We are applying the same concept to internal PHs and set out normalize PH balances of our children by repairing gut and detoxifying the body.

 

The gut/stomach can technically not absorb much if its ill (for lack of better term). At that time we headed down the path of normalizing PHs, we stopped everything but the hd B-12 (which is generated from the gut apparently, hd probiotics, hd detox daily). It immediately helped especially the detox 'we think'. Sometimes older DS would come home from school and he'd be flairing with symptoms, we would give a cup of bentonite and symptoms would be much improved within hours. We were doing this all under the guidance of a nutritionist at the time. We were not looking at methylation pathways but detoxification and gut function. We bought into the hd B-12 because it helps with mood and regenerate nerve damage which we felt were both issues for our children. We only noticed improvement with the above 3 things so we stuck with it as a result.

 

After one year heading down this path we started treating for Lyme. Since there was no ill effects our LLMD encouraged us to keep up with regimen. He then started to add stuff to lower histamines... My understanding was not from a methylation stand point but more of chronic infection typically equals high histamines. It is only over time and working with two LLMDs and adding stuff that we got to the point of treating what appears to be under methylation in our children. BUT, again this is all coming from the perspective of chronic infection potentially causing KPU and High Histamines not the reverse.

 

Antibiotics will make the body more acidic and potentially wipe out 1/2 the good bacteria 'probiotics' you ingest. Even with those issues, our children's urine and salvia PHs are starting to normalize. Again, the goal is to create an internal environment unfriendly for bad bacteria to breed. I did happen to read that the internal PH of a TIC is 6.8 and that the BB has difficulty binding at PH levels below 6.5. We are targeting urine PHs of 5.7 to 6.3 better to be too low than too high. So, the theory makes sense.

 

My answer is completely off topic but why we are using hd B-12 with potentially under methylated children. There are some really good books on the topic: Alkaline verses Acid body environments. Most approach PH balance by what we eat, we are approaching it from a perspective of proper detoxification. Once the gut repairs, PHs normalize the body will naturally lean towards a less acidic diet, technically healthier diet.

 

Edit: As for anti-histamines added... we noticed our children to be a little calmer and of course slept better. We used D-Hist Jr, Benadryl and Ketotifen as anti-histamines. Apparently histamines are also generated from the gut. Ketotifen is a mast cell stabilizer and used often with ASD children due to over production of mast cells. John might have a better explanation on Ketotifen. We have weaned off Benadryl and now attempting to eliminate D Hist to see if there is a change in symptoms. Older DS continues to use Ketotifen.

Edited October 23, 2011 by SF Mom