This topic contains 25 replies, has 1 voice, and was last updated by MaryS 2 years, 6 months ago.
August 13, 2012 at 7:15 pm #3136
I listened to Dr Lynch’s presentation, yesterday. IF (AND THATS A BIG IF) I understood it correctly, he is suggesting beginning at a low dose and increasing every three days. I had ordered a product from Seeking Health but the dose was 1000 mcg – and thats the only one they sell. I am very susceptible to side effects and feel i should start lower. Does anyone know where I can find a quality product at the lower dose?
Also, I would like to comment that I find the security tag words extremely difficult to work with. I have double vision that is worse at times and i just cannot see them. If the web people read these posts, I wish they would look into that.August 13, 2012 at 10:48 pm #3137
You could open up the capsule and put a little bit in some juice or applesauceAugust 14, 2012 at 1:00 am #3139
I have a tablet that I crush, and do my best to divide it on a piece of wax paper. I have it down to about 50 mcg a serving. I have to start small, due to a side effect of painful muscles and joints.
I also have trouble making out the words sometimes. I hit the circular arrows to find one that is easier. You can try clicking on the speaker icon, but I’ve found it to be very hard to understand in the past. I haven’t tried it lately.
I also have a few questions about dosing and side effects.
I just read somewhere that you said the half life of Methyfolate is only 3 hours. I have started on a about 50 mcg by crushing a tablet, only in the mornings. When I tried 200 mcg, I got severe muscle and joint pain, and flu type aches, so stopped for a couple of weeks. Now I am starting to get more pain again, with more fatigue, worsening in the afternoons and eveings. I do not get axiety, or any kind of irritability, etc. Should I try to muli-dose it? Can these symptoms be due to just detoxing? I actually started getting these symptoms, but more mild, when I started the methyl b12. I am taking Meriva, 1 with each meal. I tried taking a charcoal capsule at bedtime, and I think it helped, as I skipped it last night, and felt worse today.August 14, 2012 at 7:00 am #3140
The achy stuff is detox (too much stuff coming out too fast). Stop until all symptoms clear. Then restart, cutting back the dose amount, and possibly also frequency until you get to a level that is tolerated. Once it\\\’s tolerated, you can increase to the next dose increment. This is what is meant by \\\”start low and go slow\\\”.
To divide capsules, I buy empty gel caps from the health food store. Then divide them in half, then half again, then half again and so forth until I get to the desired dose. The reason is that 1/2 is easy to eyeball.
1 = 1000mcg
1/2 = 500mcg
1/4 = 250 mcg
1/8 – 125 mcg
1/16 = 62.5 mcg
1/32 = 31.25 mcg
1/64 = 15.625 mcg
1/128 = 7.8125 mcg
1/256 = 3.9 mcg
I\\\’ve never had to divide anything smaller than 1/256. There\\\’ll be just a few specs in the capsule at that point anyway. I had to start quite small with methylfolate and gradually work my way up.August 14, 2012 at 5:20 pm #3142
Thanks to those who have written back. It seems the more i read, the more confused i become. I dont think i could ever divide the product like you do Caledonia. For one thing, i have double vision and would probably really screw things up. It seems strange, that if dose titration is so important, that there wouldnt be a low dose formula available. For now i have i have ordered the sublingual version with vit B-12 – we’ll see. If anything significant occurs, I will keep you posted.August 14, 2012 at 6:12 pm #3143
Thanks Caledonia. Dividing the 800 mcg dose was what I did, but I thought doing so by 1/16 would be small enough. I’ll stop, take a break and try again, smaller yet. I just listened to Dr. Ben’s lecture again, and caught some more info. He says to ramp up the Methyl b12 to 5000 mcg before trying the folate. My doctor thought all I would need is 1000, so maybe that’s a factor in my getting so much more pain?
I also caught near the end of the lecture, that excessive methylfolate may utilize BH4, thereby causing an increase in peroxynitrite and nitric oxide. These case pain, headaches, soreness, and neurologic tingling. By using up all of the BH4, it is not able to process peroxynitrite. I need to research more, so as to understand that better. I have read where some supplement with BH4. I had never heard of it before, so not sure if that is something I should maybe try?
I think I also understand now that if you are getting plenty of folate from food, that getting enough B12 can improve methylation without supplementing with methylfolate. I eat extemely healthy, with lots of salad, and also supplement with wheat grass. Any comments on this?
Caledonia, Do you have a neighbor or close friend who could help you divide your doses?September 12, 2012 at 2:18 am #3459
I’m still having a hard time tolerating any methylfolate. I’ve tried lightly dabbing my finger in the powder, and mixing it with a bottle of water, then drinking it thru out the day. The next day I get some pain. After two days, it gets worse. I thing it is making me more fatigued too. I am getting frustrated at this point.
I was able to work up to 5 mg. of methyl B12 and am also taking 2.5 mg. of dibencozide B12. I think I feel better on them, but not a huge difference. When I first started the b12, and each time of increasing, I would get very loose, smelly bowels. Anyone else experience that? At this point, my bowels are still loose, but not as bad. They want to completely empty in the early morning, then I get intestinal pain with gas later in the day. I have been on the GAPS diet for a year now, and my bowels had greatly improved until with the B12.
My doctor also has me on Molydenum, and it has helped tremendously with the dry burning eyes I was getting. He said it sounded like I wasn’t detoxing formaldehyde. Occasionally I still get burning eyes, but nearly as bad.
Any suggestions as to what to do now?September 12, 2012 at 10:53 pm #3466
Have you had any 23andMe or Dr. Yasko’s genome testing? I’m wondering if you might have a CBS mutation. CBS also affects methylation, but it’s an upregulation and makes things good things go down the drain faster, resulting in low glutathione levels. With a CBS upregulation, taking methylcobalamin and methylfolate can actually makes things worse, until the CBS mutation is dealt with. CBS causes higher ammonia and sulfite/levels in the body. The recommended diet is lower or no animal foods, at least initially, until ammonia and sulfite/sulfate levels are normalized. One of the things it leads to is low molybdenum levels.
There’s been some discussion on the forums here about CBS. You should find something if you search on CBS.September 13, 2012 at 3:42 am #3475
Dolores, I have found this to be the best site for learning about CBS: http://www.heartfixer.com/AMRI-Nutrigenomics.htm. Drop down to the CBS section.September 13, 2012 at 11:55 am #3477
Thanks Lynn. I have seen that, and have asked my doctor for more testing for a couple of months now. He did just respond to my last email, and said he has ordered a few methylation pathway test kits, and that we will talk about it at my next visit, which is next week. Last month, I gave him info on the tests that Dr. Ben offers. My insurance should cover the cost, so I have to have my doctor order the tests. I guess in the mean time, I will try to start cutting back on the meat and sulfer foods. Last time I asked my doctor about the sulfer, and he didn’t think it would be an issue with the amount of molydenum he has me taking. I eat a lot of protein, meat and sulfer foods. The Gaps diet that I’m on, uses a lot of meats and protein, and my doctors have always told me I need a lot because of my hypoglycemia, low thyroid and fatigued adrenals. I have also seen that the methylation cycle can effect all of these, so I feel like I’m in a catch 22. My doctor did say to stop trying the folate for now. I saw that Dr. Ben is a bit leary about how accurate the 23andme testing might be, since it uses saliva testing.September 13, 2012 at 3:55 pm #3484
This article http://livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/ has a little different perspective on what sulfur foods need to be minimized. I was happy to read that meat isn’t that bad because it doesn’t have a lot of free thiols. Since I have been eating something similar to a GAPS diet for some time, and found out last week that I’m homo for CBS A360A, I’ve been distressed about needing to lower ammonia and sulfite/sulfate producing foods. Recent muscle testing indicated that beef was okay for me, so this article explains that puzzle for me.
Regarding 23and me accuracy. I have seen one study of the accuracy of 23andMe versus blood-based genetic testing. The study said 23andMe was comparable in accuracy to dCode, and both had about a 3% error rate. My Spectracell MTHFR test and 23andMe both showed I am homo A1298C. I was surprised at how much saliva 23andMe required for their sample.
You can order sulfate test strips, about $40, to do home testing of sulfate levels. Jack discussed them in posts with 23andMe in the title.September 16, 2012 at 12:40 am #3504
Lynn- I did the 23 and me and am hetero or homo for almost everything on there unfortunately. Did yours show anything for the NOS and Soux Snp’s after pluging into the genetic genie? Mine is showing blank on there and I am curious to see what those are in relation to my other mutations. I didn’t know if that was just mine or 23 and me doesn’t test for those.September 16, 2012 at 2:57 am #3507
23andMe doesn’t test for NOS, SOUX, VDR fok1, COMT L136, MTR3, and ACE Del 16. Those are the ones I know about.September 16, 2012 at 1:28 pm #3510
Well, I’m also in a similar situation. I have been experiencing muscle pain, insomnia, and had a flare up eczema since starting to address all of my MTHFR mutations. I am homo for CBS (and 4 others) and hetero for C677T(and 3 others) I did try starting a low sulfur diet and have not felt better on it. Like Dolores I have adrenal issues and hypothyroidism (also low ferritin) and feel I need the animal protein. I actually made the mistake of starting with 7 mg of methyl folate! I didn’t connect the mucke pain with it at first and was scared that something was terribly wrong with me! It was bad! I didn’t know it was best to tolerate b12 before methyl folate. Has anyone tried hydroxy B12? It is recommended on the heart fixer site for those of us with CBS and c677t. Mine should come in the mail tomorrow. I’ll let you all know how it goes.
Patti, I’ve read a couple posts from Dr Ben and I think he uses his multi vitamin as a way to slowly increase methyl folate. 8 capsules have 400 mcg so you could start with only 50 mcg with one capsule. Ive been thinking about trying that method, but I have issues with fatigue if I take too much zinc and Mg during the day and dont always do well on multivitamins. Maybe I’ll try the hydroxy b12 first.
Also wondering how much molybdenum you guys are taking? I’m basically trying to figure this out on my own, no doctors help, and it’s been hard.
Very helpful discission for me, thanks!
MarySSeptember 17, 2012 at 3:15 am #3514
Your doctor has a belief that the amount of molybdenum you take is taking care of your sulfur problem. You can quantify if his belief is true or not by ordering the urine sulfate test strips for $40 and do at-home testing. If he orders a comparable test from a lab, great, otherwise I wouldn’t just accept his belief as truth.
I have the CBS A360A, supposedly the “CBS-lite. My test strips came Friday and I was quite shocked to see I was >1600, the highest reading available. I’ve now ordered molybdenum and had already been taking charcoal. Yucca root is the other substance I’ve seen recommended for high sulfur. The ideal level is >400, so I’m interested to see how easily it will drop.September 17, 2012 at 1:19 pm #3516
Lynn, I was wondering if you purchased the sulfate or sulfite test strips? I’m not sure which one is best for thoses of us with CBS.
Thank you! MarySSeptember 20, 2012 at 1:43 pm #3561
Anyone else know which strips are best to get?
MarySSeptember 20, 2012 at 2:10 pm #3562
Thanks again Lynn. I’ve been out of town. I see my doctor today, so hopefully we will make some progress, and do some more testing. I’m copying the last pages of this discussion, so I can remember what to ask him about. My endo… doctor is going to do a 24 hour sulfer urine test with my next blood testing, which will be in 2-3 weeks. I will look up info on the test strips. I’m taking 1 mg. Molybdenum with breakfast, and another with dinner. I’m still getting a little of the dry burning eyes, but not near as bad as before starting the Molybdenum.September 21, 2012 at 1:54 am #3568
I have been reading all of your posts. I was on here a while back and described my situation which I will not go into detail of again. I first want to commend all of you for all of your efforts to feel better and find a tolerable treatment dose. I get very frustrated and find my whole life is all about this gene and nothing ever seems to really improve for long with the folate/B treatement for me. I battle with severe anxiety and nervousness from nowhere, and now depression. I tried for what seemed like forever to get by with the folate treatment with no real limprovement. I had to go back on an antidepressant and a different one at that which is now cauing me more nervousness when I take the folate and B. Nothing and I mean nothing stays balanced in my system no mater how figelent I am to be consistent in my suppliment regiments and medicines. Does anyone out there have any good experiences with an anti depressant that works well with the folate B suppliments? I have tried the deplin and that was a nightmare.September 21, 2012 at 3:57 am #3569
Sorry to hear your story – have you followed all the lifestyle advice as well, ie eating a diet of organic fresh fruit/veg/meat, and clearing out any toxins from your household such as cleaning products, makeup, etc? I have terrible problems with new furniture, I can smell the plastics off-gassing even walking through a store, that’s another one to watch. Hopefully you haven’t painted recently, or put in new carpets or furniture.
I can’t help with antidepressants or suggestions for supplements, but so many people seem to come on here just asking which pills to take – when the lifestyle aspects are so important too. What’s the point of trying to get the toxins out, if you are still pumping more of them in? My apologies if you are already well aware of that and working hard at it I hope you get some relief soon, and find something that works for you.
All the best,
AllieSeptember 21, 2012 at 4:33 am #3570
Matina- have you had your other SNP’s checked? Just following the mthfr protocol and lifestyle wasn’t working for me. I just did the 23 and me test and now I see why it wasn’t. I’m just getting started with trying to treat my CBS and other issues. It’s all pretty overwhelming but might be worth looking at.September 21, 2012 at 3:32 pm #3575
Mary, Thanks to Jack from another post, you can find the sulfur test strips here. http://www.ctlscientific.com/cgi/display.cgi?item_num=91329 I just bought some.
I decided to post my doctor visit info on the 23andme post, since it applies more to that discussion.September 21, 2012 at 5:16 pm #3576
Thanks Allie and Thera for your response. I do try my best to eat healthy and eliminate processed and unnatural foods along with no white flour, rice and sugar-but at times I would have to go without eating if I didn\’t occasionally eat the whites due to our budget and the economy. As far as toxin I try to stay clear but the reality is I live in the world with a more in my family and am trying to repaint my home rooms due to SAD. It is difficult not to breath in some toxins. Also I am trying to get off of bio identical hormones as the progesterone is causing many mood issues with me. And neither is good I am sure for my system whether bio or not. What is SNP and CBS and why are they important?September 21, 2012 at 11:45 pm #3584
Thanks Dolores! Im going to get those strips! I actually have the same improvement with taking molybdenum. It really helps with my burning tired eyes and i just don’t feel so drained out from the neck up. I take 300 mcg molybdenum at breakfast and lunch and at bedtime I take seeking health’s trace mineral complex with another 250 mcg. That’s 850 mcg a day! Also 500 mg acetyl L-carnitine first thing in the morning on an empty stomach. I am CBS++.
Martina, I agree with Thera about checking out if you have other mutations. I am hetero for c677t , but didn’t really feel better when I tried adding in methyl folate. However, Im also homo for CBS (and 7 other mutations that impact methylation) and felt a lot better when I added in some recommended sups for that. You can check out heart fixer to learn more about the other mutations.
I got my testing on my own through 23andme, which cost about $300. Maybe there is a test that would be covered if recommended by your doctor.
MarySSeptember 22, 2012 at 2:01 am #3587
MaryS, Have you found a Carnitine supplement without fillers? I was looking at the health food store the other day, and couldn’t realy find one I would be happy with. The liquids looks like a possibility, but they had other nutrients and sweetners I wasn’t thrilled with. I haven’t checked to see if there is one on Seeking Health, I guess I should. I do plan on ordering the items Dr. Ben recommends for his drink mix.September 22, 2012 at 10:06 pm #3598
Dolores, there is one available from seeking health that I will definately get when I run out. Mine is from the vitamin shoppe. It is free of all allergens but has magnesium sterate in it, but it was the best I could find t the time (I bought it before I even knew about seeking health)