Bad News for DNA Methylation Protocols.

[Hip]

Most big medical discoveries started out as fringe concepts, too.

New theories in science can start as fringe concepts, but that's why legitimate scientists vigorously pursue robust evidence, as they know without that, nobody will take their ideas seriously.

Whereas the pseudoscientists ignore that inconvenient need for evidence, and instead will create a "guru" following among the general public.

 

[Learner1]

In the case of ME/CFS, the scientific community has managed to stand firmly in the way of progress. It's still going on today, where stilted rules and hierarchy are keeping patients suffering.

I am quite thankful, not only for researchers who have been diligently studying various topics, but also for educated people who have helped pull together research from various sources, condensing and interpreting it into a format that has been actionable, something that most research studies are not.

There is indeed a lot of information and even misinformation on methylation on the web. Self proclaimed gurus like RichvanK and Freddd have certainly had a lot of influence here, with varying results for many of us.

The flaw is in following the dogma.

As a patient, getting good data through good lab work is valuable and the process of bringing the abnormal into normal ranges can yield excellent results.

At the OMF Symposium, I was fortunate to converse with Dr. Naviaux, where I described the approach my functional medicine doctor and I were taking to normalize my biochemical pathways. He agreed that it was a good approach - he emphasized that moving pathways out of a state of winter metabolism into summer metabolism held the promise for getting well.

 

[Sundancer]

It's not really an attack to call someone fringe, although I agree it is not exactly a complement; it's saying they are engaged in fringe science.

I do not really yearn to become part of this debate. But fringe science is always needed to shake up real science. I cannot judge whether people mentioned here are self proclaimed guru's.

I found B12 worked for me and that's how I found this forum, I wanted to know what B12 does in the body and why I feel better and how to make the best of it.

But about fringe science, When I crashed, i reverted to the state of an autistic ten year old in a few weeks. totally debilitated, not able to sleep/think/whatever, severe constant tinnitus. Then I found a Belgian therapist who is looking at still another part of the elephant, the endogenous opoid system. His advice and supplements have helped me enormously. Tinnitus was gone with six weeks, came back once when I had an infection and after that disappeared. The dopaminergic system that had gone totally out of whack is getting close to normal by now. He works only with herbal extracts and things that belong in the body. For someone who had idiotic reactions to regular pills all her life that's an encouraging thought.

No, he did not cure me, but yes, his take on things has helped me from bedbound to housebound.

And yes, that is fringe science, I know that part of his hypotheses are probably faulty, need testing and validating, but real science is not very interested.( yet). But as I want to work toward better functioning, I took the chance, listened carefully to what this sups did to my body.

I look the same way at this methylation thing, reading, trying out, asking questions, carefully trying out.

 

[Sundancer]

If you look at the poll, I defined a "major improvement" in a particular way.

Have the vitamin B12 supplements you are taking resulted in a "major improvement" by the definition in the poll?

Basically, a "major improvement" is defined as one where a patient moves up 1 level on the ME/CFS severity scale of very severe, severe, moderate, mild and remission. For example, if after treatment a patient moves up from severe to moderate, or moves up from mild to remission, those types of 1-level improvements are classed as "major" in my poll.

yes, I think this is a major improvement, even though I find three months a small period.
I can sleep mostly seven hours a night, sleep is restorative.( versus 5 hours, not restorative) ( am cutting back on sleepaids now)
I fall asleep within half an hour/versus mostly more then an hour and twice a week not.
day/night rhythm is back.
I am able to concentrate on difficult stuff for 3 hours versus not
since two weeks I find I can walk a little outside, and walk the stairs up to 3 times a day/ versus not.
Several hours a day my body does not feel sick versus constant feeling of sick, that amount of hours is still growing.
more resilient to emotional stress ( had two big stressors the last 6 weeks, nothing PEMlike happened)
It seems that PEM is lessening, I haven' t had any PEM since some weeks
( I even have been chopping some wood, where I have been doing a regimen of sitting half an hour to an hour, the doing dishes for ten minutes. Then sitting.etc. The resting period growing through the day to an hour.
before I got PEM from accidentally moving things weighing more the 3 kilograms. the wood I carried from the shed was decidedly more then that 3 kilograms

I was out, talked to a neighbor, was nice, we talked some more, he showed me some things in his garden and then I found..he wow, I'm not getting bad from standing, and I'm long over the usual 10 minutes. So, something is happening in OI too

But I will still be careful, I can ruin this development by doing too much too fast.
I also had a sever setback after 2 or 3 weeks, I then reduced the amount of B12, instead of adding other things.

The advice I found on the forum was very useful. I did need the potassium, then cut back on something else and could go without it.
I had very scary symptoms from adding selenium, stopped B12 a day, then started again and after that took selenium again, a quarter of the dose.

I think, that's the beginning of tweaking myself to health,
I'm happy I don't know whether it is methylation or something else, but it works for me

but I wont add to that poll until I'm a year further

 

[Hip]

I found a Belgian therapist who is looking at still another part of the elephant, the endogenous opoid system. His advice and supplements have helped me enormously. Tinnitus was gone with six weeks, came back once when I had an infection and after that disappeared.

The use of herbs or supplements in not fringe science: many people who experiment with these are being quite scientific within their experiments. People take supplements, and then they empirically observe the results.

And there are numerous published studies showing how supplements can be of benefit in various illnesses.

What supplements did the Belgian therapist prescribe, by the way? I am always interested in trying new herbs or supplements.

yes, I think this is a major improvement, even though I find three months a small period.

Are you able to say where you were on the ME/CFS severity scale before methylation, and where are you now?

Very severe = total bedbound 24 hours a day, except for a brief visit to the bathroom.
Severe = mostly bedbound for much of the day and night, except for a few hours being out of bed each day
Moderate = mostly housebound, and not able to work
Mild = able to work part-time or full-time, although you will likely come home exhausted and not be able to do much

There is indeed a lot of information and even misinformation on methylation on the web. Self proclaimed gurus like RichvanK and Freddd have certainly had a lot of influence here, with varying results for many of us.

Rich Van Konynenburg organized an informal study on his protocol, so he was at least following the scientific method of gathering empirical evidence. There is nothing wrong with being enthusiastic about new theories or new treatment methods, provided that you don't skirt around the all-important need for measuring results and testing theories empirically.

 

[Sundancer]

The use of herbs or supplements in not fringe science: many people who experiment with these are being quite scientific within their experiments. People take supplements, and then they empirically observe the results.

yeah, to me fringe science ( in this field) is people who use scientific publications and empirical evidence ( observation) to create remedies for problems.

My therapist advised
1) a diet without gluten/cowsdairy/soy/spinach. These are exorfins and ' glue' themselves to receptorcells in the Endogenous opoid system ( EOS). Peopel can have bacteria in the gut that produce exorfins too...these are the real baddies. especially people with autism are prone to this.
2) DPPIV enzyme, generally used to help peple digest gluten, but scavenges those exorfins from the receptorcells too.
3) a supplement he dubbed NMDArelief.
4) some serotonin ( build up very slowly, until reached the max he gave of 300mg) and must be the first sup to wean myself off. Now on 100mg)

As far as I understood him, he says that the disbalance in the OES also creates a disbalance in the dopaminergic/gabaergic and serotonergic systems ( and probably more) the NMDA relief does indeed give relief in the stress created by the gutamate-route being out of whack, but also is slowly fixing the dopaminergic system, which is a slow process, still going on.

( further more general advice concerning diet/histamine , pacing etcetera, not what you're asking for here)

Bevat per 1 capsule van 650 mg (dagdosering): Voor kinderen vanaf 6 jaar is NMDA-Relief Junior® beschikbaar.


Ingrediënt Gewicht Extract
Glidkruid (Scutellaria lateriflora) 200 mg 98% baicaline extract
L-theanine 200 mg 98,5% L-theanine
Magnesium-bisglycinaat 200 mg 22 mg elementair magnesium
Ginkgo biloba 50 mg 24% ginkgoflavonglycosiden
6% ginkgoterpeenlactonen
minder dan 5 ppm ginkgolzuren
.

WERKING

NMDA Relief® activeert dopamine, vermindert de activatie van glutamaat (geactiveerd via de NMDA-receptoren) en verlengt de werking van oxytocine.

• Glidkruid bevat 2% baicaline. In NMDA Relief® wordt een baicaline extract van 98% gebruikt. Baicaline wordt in de darm bacterieel omgezet in het actieve baicalein dat efficiënt wordt opgenomen in de bloedbaan en doorheen de bloed-hersenbarrière passeert (ref). Baicalein is een sterke GABA agonist (activator) en fungeert als een glutamaat-remmer (ref). Vervolgens wordt baicalein in de bloedbaan omgezet in oroxylin A, deze flavone is eveneens een GABA agonist, maar verlengt tevens de werking van dopamine (dopamine reuptake inhibitor) (ref). Oroxylin A verhoogt BDNF (brain-derived neurotrophic factor). BDNF heeft een gunstig effect op het geheugen en leervermogen (ref).
• L-theanine is een aminozuur uit de bladeren van thee (Camellia sinensis). L-theanine verhoogt dopamine, serotonine (glutamaat-remmer) en GABA (glutamaat-remmer) (ref).
• Magnesium activeert de werking van endorfine (op het niveau van de receptoren) (ref)
• Ginkgo biloba heeft een dubbele functie. Het herstelt de gevoeligheid van GABA en verhoogt dopamine (zie productfiche Ginkgo biloba). GABA is een glutamaat-emmer (ref).

if you want me I will translate this text for you, but not today, I've a setback.