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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Hello, glad to find this site

Violeta

Senior Member
Messages
2,945
I certainly didn't take the short cut to getting here, but I am so blessed to find this site. I feel like I just found my true genetic family. I have come across under/over methylation many times in the past while trying to find ways to get better, but I never realized how relative it is to my problems. I had been reading about porphyria because of having a lot of the symptoms, and someone posted a link to a study that said that B6 can put it into remission. Someone else said that with porphyria you need to take it in the p5p form or you will get worse. That was the beginning of my search into methylation issues. I then googled methylation with fatty liver because along the way I've noticed that fatty liver is related to a lot of issues, and found an article about fatty liver by Chris Masterjohn in which he explains the problems it causes with methylation.

I started taking Thorne Methyl Guard Plus after reading about methylation protocols at a few sites. I started taking 2 a day and thought I was going slow because the recommended dosage is 3/day. Needless to say I hit a wall in a couple of days. I tried opening a capsule and taking very small doses, but it tastes so bad that I ordered some empty capsules. Since then I also started drinking black tea thinking that maybe I could get away with it now. By this past Saturday I was so sick, and Sunday my lips started to get dried and cracked with what felt like cold sores all across the lower lip. Also, I started to have a lot of anxiety and get very depressed.

That's when I found this site and have been reading as much as time and energy permits. Fortunately I found the information about potassium, and had some on hand. That helped so much. I thought the problem with my lips was just from dehydration from the tea, but after reading about cheilitis here, I think that's what it was. Last night I looked up potassium in Prescription for Nutritional Healing and it said that caffeine causes a potassium deficiency, so I was probably coming up short on potassium for more than one reason, the other reason being too much methylfolate and methylB12, if I have that right.

I don't know how everyone here can understand all this; I don't know if I'll ever be able to get a handle on it all. But fortunately I seem to have one positive gene that makes me not give up.

Thanks for being here,
Thanks to Rich and Fredd, and all who have taken time to share their knowledge,


Betsy
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Violeta

Welcome! Yes the topics and information here can be overwhelming but you do learn to navigate around and read the threads that seem relevant for you.

Nice you found us!

Sushi
 

Lotus97

Senior Member
Messages
2,041
Location
United States
I started taking Thorne Methyl Guard Plus after reading about methylation protocols at a few sites. I started taking 2 a day and thought I was going slow because the recommended dosage is 3/day. Needless to say I hit a wall in a couple of days. I tried opening a capsule and taking very small doses, but it tastes so bad that I ordered some empty capsules. Since then I also started drinking black tea thinking that maybe I could get away with it now. By this past Saturday I was so sick, and Sunday my lips started to get dried and cracked with what felt like cold sores all across the lower lip. Also, I started to have a lot of anxiety and get very depressed.
The dosage in Thorne's Methyl Guard Plus (and even their regular Methyl Guard) might be too high for some people, but even if it's not you still need to take B12 sublingually (or by injection) because the absorption rate in the gut is very low for B12. Therefore you'll be getting a disproportionate amount of folate compared to B12 which could lead to methyl trapping. I don't think there is a correct ratio for everyone, but Rich and Freddd both give guidelines for that and both of them recommend taking B12 sublingually.
 

Violeta

Senior Member
Messages
2,945
Thank you Sushi, Lotus97, and SickOfSickness. Lotus97, I did order some sublingual B12, I'm looking forward to trying that.

I haven't taken any B's today, and I am still having anxiety on and off. Does that sound more or less normal? Do you wait til it goes away to try more? It feels like the anxiety comes from my gut, could that be so? That happens to me all the time, even before I started the methylated B's. I ate some watermelon yesterday and today, which I haven't had for a long time, and it's causing a lot of pain, too. Is there anything that can be done for abdominal pain? (I can't take meds) I am a real mess.
 

Victronix

Senior Member
Messages
418
Location
California
Hi Betsy,

Hang in there. It can take a couple of weeks to adjust to the start-up effects but potassium will help with that. Also the comment above on the ratio of methylfolate to methyl B-12 is worth considering -- I'm not an expert on methyl trapping but you want to avoid that if you can.
 

Violeta

Senior Member
Messages
2,945
Thanks, Victronix.

I'm having a hard time finding a recommended ratio of methylfolate to methy B-12. I do realize that I'm going to have to buy the B's separately in the future, too.
 

Hip

Senior Member
Messages
17,858
I then googled methylation with fatty liver because along the way I've noticed that fatty liver is related to a lot of issues, and found an article about fatty liver by Chris Masterjohn in which he explains the problems it causes with methylation.

Hi Violeta, welcome to the forum.

Would you have a weblink for that article on methylation and fatty liver? I did not know there was a connection, and as I was diagnosed with fatty liver not so long ago, I 'd be interested to read it.
 

Violeta

Senior Member
Messages
2,945
Hip, here's the link to his article in which he talks about methylation.
http://blog.cholesterol-and-health.com/2010/12/meeting-choline-requirement-eggs-organs.html
He has other articles on fatty liver. I started taking choline before looking into the B vitamins hoping that clearing up fatty liver would help with overall methylation issues. I'm still taking it, and as often as I can I take some herbal tinctures from www.sensiblehealth.com.
Before reading at under/over methylation sites I had read that people who don't feel well when they take pyridoxine need the preformed version, p5p, because their liver can't convert it to the usable form. That conversion is methylation(correct me if I'm wrong, someone). So since then I have been thinking that I really need to work on my liver. I knew something was wrong with my liver, too, when reading about porphyria, of which I have a lot of the symptoms, and found out that porphyria is the buildup of heme precursors and anything that activates Phase I detoxification in the liver, which is accomplished by cytochrome P450 enzymes, can bring on an attack. It can be genetic, but it can also be brought on by certain drugs, toxins, mercury, certain foods, even some nutrients. And STRESS. Because the stress hormones are detoxed through the Phase I And stress can be a cause of fatty liver. It just all ties together, but my brain is so fuzzy right now that I can't put it in a way to make sense to other people. I hope this isn't too confusing. If so, I don't mind questions for clarification.
 

Violeta

Senior Member
Messages
2,945
Violeta
If potassium doesn't help with the anxiety then you're probably taking too high of a dose. As far as the ratio, Rich and Freddd give guidelines. This is Rich's most recent protocol:
http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/

And this is Freddd's
http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

Thanks, Lotus, yes, I've been reading both of those over and over.
I think I do have to back down a little. I won't take any of the b's today, and actually I'll wait til I get some empty capsules to take only small amount of the Methyl Guard, and then take a sublinqual B12 with that. That way I'll get less methylfolate and more B12. The ratio of folate to B12 in Methyl Guard is 1:1.

Thanks again,
Violeta
 

cph13

Senior Member
Messages
221
Location
USA
Thanks, Lotus, yes, I've been reading both of those over and over.
I think I do have to back down a little. I won't take any of the b's today, and actually I'll wait til I get some empty capsules to take only small amount of the Methyl Guard, and then take a sublinqual B12 with that. That way I'll get less methylfolate and more B12. The ratio of folate to B12 in Methyl Guard is 1:1.

Thanks again,
Violeta
Welcome Violeta to this amazing site. This can be a full time job, unfortunately, my time and ability are limited. Today, I am having a better brighter day so I thought I would greet you the way I wish I could to everyone, everyday.
There is a lot of reading to be done before you can sucessfully decide which protocol to follow and what is best for you. Things change from page one to page two on these posts and when you get to a 68 page thread, YIKES, it's daunting. The two protocols designed and researched by Rich (may he RIP) and Freddd are the EVER CHANGING protocols, as the brilliant masters on this site learn by trial and error. Unfortunately,Rich is no longer with us to add his expertise. Freddd is still on here most of the time. Due to his condition, he usually experiences the side effects when things should be titrated/changed. He is more than willing to share his findings along with the many other brilliant members here/ HELP in abundant on this site by all.
Caledonia's sign off has some very excellant educational links check it out.
Unfortunately, to date, there is no one place to find the updates/changes to protocols in one place( I believe someone is working on that). Therefore, reading, keeping on top of the posts, and posting is the road to success. I had a member notice my intake of folate. That person suggested decrease folate or up intake of potassium. Yikes, potassium does it all for me....Everyone helps or comments if they see something that you post that maybe amiss.
I have been taking most of the essential vitimins for 20+ years (those being Zinc - 50 mg, Calcium/magnesium supplement, D3 - 3000-5000 IU total,A&D from fish oil, 10,000-(400-800-1000 D) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken, Vitamin E, Gamma complex , Vitamin C 4000+mg/day----(copied from Freddd's protocol). After a bad trial(I write of below) I chose to add a b-complex first ( I added pure encapsulates b=complex plus and/or Douglas Labs/IFactor). 3 months of b-complex before I added anything else. Than I stocked up on the mb12, methylfolate and potassium. It was my consideration that my body could not utilize anything that needed to be converted so I went with my KISS theory (Keep It Simple for my Stupid body) I was doing remarkably for about 4 weeks. Than I began to add other co-factors one at a time. I am still OK but not GREAT as I was. I imagine, it's time to up my dosages of mb12.
This is very much Unlike my first journey where I started with Jarrow Formulas 5mg Methyl B12. It was considered by some a 5 star b12. I did not know that the forumula had changed; many of us did not know. It was and is an inferior b12 to take for many of us. (This is still on Freddds' protocol)CAUTION needs to be exercised with this item. My insomnia was HORRIFIC, even at a 1mg dose. I stopped all methylation items. I than got the right b-complex/ and started slow with that as stated.

My point Violetta is...get your ducks in a row. Make sure U R getting the essentials, if not, add them one at a time while you read, than just must read and finally, read some more :aghhh: . Decide on Rich or Freddds' protocols (some people mix the protocols) Whatever you choose remember: this is an ongoing learning experience. You must pay attention to your body as U add things (I thought I could remember it all. NOPE, take notes to your reactions. It all means something) START SLOW. Titrate up slow....
Again, welcome, wishing you much success on this healing journey we share. Happy healing, Hugs.