e. coli nissle/mutaflor and B12

[lizw118]

I posted about mutaflor in the gut forum, but I wanted to post here and see if anyone has used this. I have been using it for a few days, and I might be imagining this, but it seems like now when I take B12 it is actually having an effect on me, whereas before, I simply took it a few times a day sublingually and it never did anything. I am low in B12, btw. I wonder if mutaflor is patching up my gut or helping me with the B12 is some way. Is this possible?
Liz

 

[richvank]

I posted about mutaflor in the gut forum, but I wanted to post here and see if anyone has used this. I have been using it for a few days, and I might be imagining this, but it seems like now when I take B12 it is actually having an effect on me, whereas before, I simply took it a few times a day sublingually and it never did anything. I am low in B12, btw. I wonder if mutaflor is patching up my gut or helping me with the B12 is some way. Is this possible?
Liz

Hi, Liz.

E. coli bacteria are able to synthesize folate. (This was first pointed out to me by Dr. de Meirleir.) It may be that you are inadvertantly giving yourself a methylation treatment. The essence of methylation treatments is the combination of high-dose B12, taken sublingually or by injection, and an active form of folate.

Best regards,

Rich

 

[Crappy]

lizw118

I have been using it, and some others like VSL#3. Mutaflor is so expensive I learned how to grow my own from Dr Mahill's web site. I have spent thousands on Drs and treatments, but I think probiotics have done the most for me. I have to agree with Dr Meirleir, digestion seems to be the epicenter of the problem.

I have come across articles claiming without E. Coli, digestion can't make the necessary compounds for sleep. Unfortunately, even with massive E. Coli use, my sleep disruption remains firmly intact.

Is this your first venture into medicinal use of probiotics? Do you have a significant insomnia problem?

 

[lizw118]

Hi Rich
Yes, maybe the mutaflor has enabled the methylation therapy to make a difference. My methylation stuff is definitely out of whack according to tests and I have tried taking high doses of B vitamins including B12 to no avail. Maybe now it is working. I have a lot of energy tonight, so that is a good sign, but I don't like to hold my breath until a certain duration of time has passed to see if something works.
How much B12 do you think I should take per day?
Liz

 

[lizw118]

Hi Crappy,
I read about making e coli nissle own from Mayhill's site, too. Interesting. I might try that later. Is it as potent as the mutaflor? How many mutaflor tabs did you take per day? I am just now starting with probiotics after doing anti candida and changing my diet significantly. When we take the e coli nissle, at some point does it reproduce by itself, allowing us to stop supplementing it? I am trying to figure out if I can travel and bring the mutaflor. Or will it go bad?
I used to have bad insomnia, but now I tend to sleep really well, although my rhythm is off in that I am more awake at night. Once I sleep I sleep well, though. I am on hydrocortisone for adrenal fatigue, magnesium oil, and LDN, all of which I think made the difference, sleep-wise. I am on other stuff too, but those three I think affected my sleep the most.
I didn't even know I had any sort of gut problem until I had a urine test and tons of weird SIBO markers came out super high, like d-lactic acid. I didn't even have problems with bowels or anything, so yeah, I think gut issues can affect other areas and cause fatigue and other problems.
Liz

 

[richvank]

Hi Rich
Yes, maybe the mutaflor has enabled the methylation therapy to make a difference. My methylation stuff is definitely out of whack according to tests and I have tried taking high doses of B vitamins including B12 to no avail. Maybe now it is working. I have a lot of energy tonight, so that is a good sign, but I don't like to hold my breath until a certain duration of time has passed to see if something works.
How much B12 do you think I should take per day?
Liz

Hi, Liz.

I'm glad your energy is up, tonight anyway. Hopefully that will continue.

The Simplified Treatment Approach that I've suggested includes 2 milligrams (2,000 micrograms) of hydroxocoblamin, sublingually, per day. Some people take more, and some take other forms of B12. I extracted the 2,000 microgram dosage of hydroxocobalamin from the complete treatment program of Dr. Amy Yasko.

Best regards,

Rich

 

[lizw118]

Thanks Rich
I have been taking that amount daily, although I noticed that when I doubled the dosage I felt really good. I might need a higher dose, I guess. I will update this forum about my progress. I have no idea if the mutaflor is associated with better methylation yet, but maybe I will know more later. Can you post a link to your methylation protocol? Thanks
Liz

 

[richvank]

Thanks Rich
I have been taking that amount daily, although I noticed that when I doubled the dosage I felt really good. I might need a higher dose, I guess. I will update this forum about my progress. I have no idea if the mutaflor is associated with better methylation yet, but maybe I will know more later. Can you post a link to your methylation protocol? Thanks
Liz

Hi, Liz.

The current version of the protocol is pasted below. Information about the hypothesis supporting it and a clinical study of it with Dr. Nathan can be found on Cort's website:

http://www.aboutmecfs.org/Trt/TrtGSHIntro.aspx

Best regards,

Rich

April 18, 2009


SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROME (Revised)

(Extracted from the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism [1])

SUPPLEMENTS

1. FolaPro [2]: tablet (200mcg) daily
2. Actifolate [3]: tablet daily
3. General Vitamin Neurological Health Formula [4]: start with tablet and work up dosage as tolerated to 2 tablets daily
4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
5. Activated B12 Guard [6]: 1 sublingual lozenge daily

All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.


[1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
[2] FolaPro is a registered trademark of Metagenics, Inc.
[3] Actifolate is a registered trademark of Metagenics, Inc.
[4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
[6] Activated B12 Guard is a registered trademark of Perque LLC.

 

[lizw118]

Thanks for posting that. One last question. If we do manage to unblock the methylation, does our natural methylation kick in at some point? In other words, after a while does it take care of itself?
Thanks
liz

 

[richvank]

Thanks for posting that. One last question. If we do manage to unblock the methylation, does our natural methylation kick in at some point? In other words, after a while does it take care of itself?
Thanks
liz

Hi, Liz.

For the people who have completely recovered on this treatment (about six that I've heard of), I think the answer is yes. I do think it's a good idea for recovered people to take some small maintenance dosages of B12, folate, and maybe an antioxidant, though, because they will still have the genetic predisposition, and it's conceivable that a high enough load of various stressors could bring them down again.

About two-thirds of the people who try this treatment experience significant improvement, but not full recovery. In these cases, I have suggested that there are other issues that have developed that need specific individual treatment. These may include Lyme disease, mold illness, a high body burden of toxic heavy metals such as mercury, or entrenched viral infections.

About one-third report either that they could not tolerate the treatment and stopped, or that they didn't experience any effects, positive or negative. The first group might be helped by the treatment if they were able to limit the dosages to small amounts at first, or if they could effectively counter the symptoms that arise. Excitotoxicity (causing anxiety, insomnia and a "wired" feeling) is one of the issues for this group. There are supplements that may help with this. Another issue in this group may be that the gut and liver need support first, so that they can cope better with the toxins that will be mobilized on this treatment, and take them out, rather that allowing them to be reabsorbed and circulated in the blood.

For those who don't experience any effects, I suspect that the reason is that their body lacks some of the other nutrients that are needed by the methylation cycle and related pathways. These include certain vitamins, minerals, and amino acids.

It's important to be working with a physician while on this treatment, because a small number of people have experienced some serious adverse effects while on it.

Best regards,

Rich

 

[tahoma]

Excitotoxicity (causing anxiety, insomnia and a "wired" feeling) is one of the issues for this group. There are supplements that may help with this.

Rich:

Will you name some of the supps that help with that WIRED feeling?

Thanks,
T

 

[richvank]

Rich:

Will you name some of the supps that help with that WIRED feeling?

Thanks,
T

Hi, Tahoma.

Dr. Amy Yasko has given advice about this in her book. First, it's important to avoid foods that are high in glutamate or aspartate. The worst offenders are foods that contain MSG, hydrolyzed vegetable protein, or Nutrasweet (aspartame).

Then, specific supplements that she lists to help with excitotoxicity include GABA, theanine, magnesium, taurine, progesterone cream (available in the U.S. without prescription), Valerian root, and others that I can't remember at the moment. Maybe someone here has her book handy.

Dr. Cheney has used the benzodiazepine drug Klonopin for many years, which also calms excitotoxicity. Some people swear by it. However, others have not responded well to it, and some have reported great difficulty in getting off it later on.

Best regards,

Rich

 

[Freddd]

Thanks for posting that. One last question. If we do manage to unblock the methylation, does our natural methylation kick in at some point? In other words, after a while does it take care of itself?
Thanks
liz

Hi Liz,

after a while does it take care of itself?

While the methylation aspect may kick in and be maintained more or less after a while, my experience and that of many others appears to indicate that once there is actual neurological damage it takes years (5 years without backslides) according to one doctor, to heal completely, if it ever does. Also, despite an intensive literature search by many people in multiple countries, there is no evidence any of us were able to find that the entero-hepatic b12 recirculation system ever gets functionally reestablished. There were lots of statements assuming it does, but no actual evidence in new or old research. Maintenance of serum cobalamin above 300pg/ml on monthly injections does not indicate that. That only indicates a 1-2mcg of cobalamin more in circulation than previously. When people are taking methylb12, noticeable return of symptoms starts around day 3 without mb12. When people are taking adb12 it takes about a month without to generally produce a noticeable increase in specific symptoms.

As there can be many different causes for what disrupts the methylation processes in the first place assuming that somehow all these original causes are healed just because the methylation is working is invalid. It can take years of working methylation to heal some of the cause and others may never heal.

Then there are all those 200+ other symptoms that are not methylation related but are related to other aspects of mb12 /adb12 functions.

 

[fablepd]

Hi ! After my microbiome test ( http://www.fable.it/public/wordpres...mecfs-sibo-e-ultimi-aggiornamenti-in-materia/ ) the gastroenterologist had given me ECN (as Mutaflor) and acid butirric but my fatigue and constipation, from the beginning to now ( 2 months) have worsened. Am i the only one ?

 

[Rooney]

Hi ! After my microbiome test ( http://www.fable.it/public/wordpres...mecfs-sibo-e-ultimi-aggiornamenti-in-materia/ ) the gastroenterologist had given me ECN (as Mutaflor) and acid butirric but my fatigue and constipation, from the beginning to now ( 2 months) have worsened. Am i the only one ?

When I take Mutaflor alone, at least 2 pills, it helps constipation. I am unfamiliar with the second item.