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Any help on where I can get advice on how to best deal with the specific set of mutations I have? |
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One thing I learned in trying to make sense of my results is that they're all intertwined, and you have to understand how they all interrelate before knowing what needs to be done. I wasn't able to figure out how to make sense of them as a whole. I'm ok on 677T, but heterozygous on 1298C. Since the latter apparently isn't as critical as being compound heterozygous, or having 677 issues, I haven't been frantic about learning about. Still, I could have issues I need to address. Before I would do a consultation with anyone, I would get recommendations from people who have already worked with them, and there are nice forums on Livewello where you could probably do that. I'm sure there are other free sites as well. The integrative doc I went to asked for my methylation results, then really didn't know what to do with them. I was impressed. :rolleyes: What's your Norovirus Resistance trait? That's FUT2 which can have some pretty significant impacts on your health that they still don't fully understand. |
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For now, I think I'll bump up my methyl folate dosage a bit more as well as working harder to avoid synthetic folic acid as much as possible. I'll keep researching this thing, and hopefully I'll figure it out eventually. Then again, who knows if this even has anything to do with my PN symptoms....... |
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Hi everyone, I haven't posted in awhile but I've been reading everyone's post off and on. My rheumo told me to start 5 HTP with thiamine and cayenne pepper tablets. He said he has been using both and it is helping him with joint pain. I did buy them today and then realized I probably should have checked them out first.
Do any of you take these? Do they help? I currently take fish oil, D3, probiotics, Curcumin, B12 every other day and COQ10 for supplements. I use to take R lipoic acid but read that it really works for those with diabetes. I'd appreciate any information you can give me. Thanks! |
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What dosage of 5 HTP do you take?
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I have my annual physical next month, and my PCP always wants to know what supplements I'm taking. I'm going to have to make a list and make sure I can I intelligently state why I'm taking each one. I look at the bottles here, and there's at least one that I'm not quite sure why I take. :o |
Any thoughts on Acetyl L-Carnitine as a supplement for neuropathy at this point? I've read some older discussions of it here.
Is 1000 mg the recommended dosage? Or 500 mg twice a day? It's one of the supplements I haven't tried. http://care.diabetesjournals.org/content/28/1/89.full _________ |
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I have been taking 500 mg 2x per day. It's what I've read in journals. Dr. Teitelbaum also made this recommendation in one of his books. I think this supplement may have helped my fatigue along with d-ribose when I was pretty much recliner-bound at disease onset. You might want to look through some of these studies too. The PMC database will give you full text articles. The search terms can probably be refined to get more targeted articles. You can click on "Advanced" and use the search builder for journal article optimization. http://www.ncbi.nlm.nih.gov/pmc/?ter...+neuropathy%22 |
Thanks much, MadisonGirl. Very helpful!
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@mrsD
Love your awesome answers to so many peoples questions. I wanted your opinion on this. I'm trying to get as much help, without breaking the bank. I know that all these supplements are important, I just wonder if this kind of "all in one" supplement is worth it, or should I get them separately? I'm also taking Nerve Renew, which has B vitamins, as well as vitamin D, benfotiamine, and R-Alpha Lipoic acid. *edit* |
@ KentuckyRanger.....Hi there. I saw your post on our moderator page.
Mixtures like cal/mag/zinc typically have magnesium OXIDE in them and this one does. The oxide has been shown to not be absorbed. Most people who are not vegans don't need extra calcium, or zinc. Both are in dairy (calcium) and zinc (animal meats). Too much unbalanced zinc will actually cause neuropathy, but these mixes typically are low in dose. Newbies coming to our forums should see if the "big three" helps. 1) methylcobalamin on an empty stomach.. at least 1000mcg a day. 2) a good quality magnesium like SlowMag twice a day and/or magnesium lotion applied sparingly... called Morton Epsom lotion available at WalMart, Walgreen's and online at Amazon. 3) Vitamin D3, dosing based on testing results from your doctor. The product you mention Nerve Repair will have to be done on an empty stomach to make sure the methylB12 is absorbed at all. It is quite pricey for what you get. The Big Three are deficient in many American adults..so starting there may show improvements. Heavy drinkers get depleted of magnesium, B-complex and other nutrients. The gastritis you may have had could lead to malabsorption of many other nutrients too. If you use an acid blocking drug, you will get low in these nutrients which require acid to be absorbed: B12 folate iron zinc and other trace minerals calcium magnesium This is a high quality modern B-complex product that many posters have and do use here with success: http://www.amazon.com/Jarrow-Formula...jarrow+b-right When you use up that pricey Nerve product you can decide if you want to add in, one at a time something else besides the Big Three. The one I'd try next or if you want a Big Four ...is the Benfotiamine. This can be helpful for recovering drinkers. I'd start with 300mg a day for a couple of months. Doctor's Best is a good brand many of us use and is affordable. We have a recovering alcoholic thread here that is very nice. Here is the link... you may find the members there very helpful and supportive. http://neurotalk.psychcentral.com/thread104096.html Icehouse has been in a wheelchair too... and now he is mobile, sober and running his own business. |
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Completely New To Supplements
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Hi mrsD, As an Alcohol PN newbie to the group, and a TOTALLY "NOT YET" SUPPLEMENT NEWBIE, after spending these first weeks attempting to glean a meaningful regimen from marvelling at the wealth of knowledge in these threads through experience and research(the phase I'm at now), I finally made my first purchase through Amazon yesterday. It includes: Doctor's Best Benfotiamine 150mg Jarrow Formulas Methyl Folate 5-MTHF Supp. 400mcg Jarrow Formulas Methylcobalamine (Methyl B12) 5000mcg Jarrow Formulas Vitamin D3 5000IU Jarrow Formulas B-right Comp. Veggie Caps Have been currently taking Men's One-A-Day multi which contains only 115 mg Magnesium, as well as a natural B Complex falling way short of the basic dosages I've read discussed in these PN threads. Possess no signs of even pre-Diabetic blood #s, experience no burning, stabbing pains, heat or cold spells, ears ringing, etc. such as I've heard unfortunately visited on so many of my fellow members. My symptoms are pretty much textbook variety loss of muscle with accompanying loss of strength(have no way to determine how much is due to PN or sedentary atrophy--probably a combination), lingering numbness and walking pain in my feet, lingering weakness and sensitivity in hands and fingers, ready loss of balance, all added to continuing recovery from surgery to remove a large Necrotic Ulcer approx. 2" x 1/2" x 5/8"-3/4" deep to which I was completely impervious due to numbness and in a hard to see location at the bottom rear heel. The numbness was so complete that I was completely unaware that as I was in his chair going through the usual doctor/patient health history discourse, he was surgically removing that huge mass without my foot feeling any sensation of even being touched. Afterwards he told me it had grown to within a credit card thickness proximity to my heelbone--which if reached would have necessitated amputation of the right foot. I really just dodged the bullet on that one and my podiatrist/surgeon was extremely pleased with the pace of wound recovery, though that kept me off my feet pretty much for 4 months thus adding more atrophy. The persistent problem for me that does not seem to be mentioned frequently, is that when I sit for any length of time, even for a meal, I stiffen up completely from my entire shin/Achilles area down through my ankles and entire feet. In order to arise I need someone or something stationary to get me to my feet as well as stabilize my unsure gait for at least the first ten steps, after which I still must proceed with concentrated diligence. Would greatly appreciate, after hearing this litany of symptoms, any suggestions for specific additions to the supplements listed above. Also please inform which are to be taken on an empty stomach. Many thanks in advance. |
Well, you can do what you have in your list so far for a month and see how you feel.
You can add Morton Epsom lotion applied to your legs once a day... and use that as your magnesium source. A quarter's dollop divided between your lower legs each night will show if magnesium is your main need. Walmart carries this, Walgreen's and online at Amazon. But I suspect you may need carnitine... acetyl carnitine helps with mitochondrial energy production when the mitochondria in the cells are damaged. You may try this after a month if you are still having the muscle weakness. Starting at 500mg a day and increasing by 500mg a week to a upper level of 2000mg a day. If that doesn't help within a month or so, no need to continue with it. |
Suggestions
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Thanks much. Now just waiting on UPS. |
I have recently discovered Large Flake Nutritional Yeast. This food is rich in B vitamins — so much so that I am tempted to drop my B supplementation in pill form.
Question: Is Large Flake Nutritional Yeast truly a good source for Bs, and are the B vitamins in it bio-available? Thanks. :) |
There will not be a therapeutic amount of B12 in that yeast.
Most Brewer's yeast type things are not that high in B's. This one is 2 to 3 times the RDA for the listed B's. None of those amounts are even near the therapeutic values for them. http://www.vitacost.com/bobs-red-mil...st-gluten-free |
The product on that link is the one that I am taking. It seemed like 790% of Thiamine might be sufficient. That's why I asked.
Thanks. :) P.S. It's not brewer's yeast, by the way. There is no active yeast in the product. |
Thiamine is needed by PNers in high doses most of the time.
By the time PNers get to this forum, they are pretty damaged. My B-Right is a compromise product... less than a B-50 but more than an RDA product. 25mg Thiamine or 1667% RDA. I still use benfotiamine too. You do what you think you need. Everyone is different. |
Thanks, mrsD.
My ambition is to get off every kind of pill, supplement and medication, and get what I need just from food. However, as you point out, this my not be possible. I always appreciate your generosity and willingness to share your expertise. I'm sure that we all do. :) |
The Age Old Miracle Cure
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Topical Epsom
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The people here on our other forums who use opioids in high doses have a paste they use sometimes, made from dates, raisins and prunes. For a while I collected old pharmaceutical remedies, vintage age. 1900's and before. I am going to do watercolors incorporating remedies so I needed some reference material. By far while searching Ebay, I discovered just how common laxative remedies were in the 1800's and early 1900's. Just about every "cold" product had a laxative in it. From my experience it seems like almost all remedies in the past, had a laxative added to them. Back then they were called purgatives. Historically doctors mostly bled patients or used purgatives for just about everything. When I don't buy an offer, I save its photo digitally and here is one that illustrates my point: Black Crow Pills: |
I've been using an insoluble fiber product for constipation. I can post the name here or by PM. Like with most laxatives (for me), it worked effectively in the beginning. Now, it takes a little more time and a lot more water.
Prunes and prune juice, dates and figs can be good, but one worries about the sugar. |
Laxatives and Old Lace
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Regarding the old catch-all "cold" (you might just as well call them "whatever") remedies, in most that I've found, not only is a purgative and/or an emetic added, but don't forget the ever-present companion: Paregoric, combined with the odd evolved folk cures many of which were local tweakings of lore come to our shores from age old African cultures due to the slave trade. It seems that before the widespread acceptance of Microbiology, the philosophy of medicine generally was: treat the symptomatic discomfort, and purge the body either from one end, the other, or sic your leeches and bleed the patient half to death. In the mid-1960s, back when folks still read, I'd frequent old bookstores in the East Village, Manhattan where the shelves were filled with such relatively ancient medical "textbooks"for around 25 cents per. I was in my teens and guess I figured they'd always be around. Wrong once more. |
Sugar in Natual Laxatives
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I forgot to mention Triphala for constipation. I take one every day.
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Thanks, Cliffman :hug: |
B-12
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I supplement this daily with another Yarrow complex named B-Right, maybe due to my "old school" belief that larger doses of a single B, prove ultimately more effective when taken in concert with a good B complex. Both are available through Amazon.com or other online venues that fellow members would be more than happy to suggest. Wishing continued turn-around good luck. |
If you are set on injectable methylcobalamin... you have to get that at a compounding pharmacy if you want them loaded into syringes. Once loaded, into syringes it requires refrigeration and the typical shelf life is 30 days.
The typical injectable B12 is cyano form and not the activated one. 10-30% have the MTHFR mutation and cannot methylate cyano and folic acid (in supplements) properly. The newest studies show that oral will work, as well with less invasiveness, better results if using the methyl form and taking it on an empty stomach. If you are somehow set on injectable, good luck to you. Most posters here complain about the injectable type of cyano. Stop all supplements about a week before any retesting. Whatever is causing your lower numbers, is not likely going to evaporate. Most people require supplements for life, therefore. |
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The only evidence I have read about was in the book "could it be VitB12"? They claim the shots are needed if one has neuropathy issues. That said, I have no idea if it's really true. Cliffman :) |
Sarge, the company you are describing is JARROW (not Yarrow).
It is one of the first who offered oral methylcobalamin and at one time was only available on iherb.com Today we have other suppliers which are at Puritan's Pride, Costco and Walgreens and perhaps other local places. In the old days, over a decade ago we were only able to get it online. I tested out the Puritan's myself, and at 5mg a day reached a blood level of 1999 (the top of the calibration range). And as I mentioned before, if the MTHFR mutation is present, then one needs the methylfolate also. We are rather fortunate that in some ways repairing B12 levels is fairly simple, now, and inexpensive. Information changes, new studies come out, and like most medical things, are not cast in stone. Still doctors may cling to their old therapeutic manuals, which were printed before 2003. The AAFP link I provide gives new medical information targeting doctors, in 2003 and still people cling to the "old ways". I personally think once a month shots are artificial. We evolved getting our B12 orally from food. When that fails (due to low acid in the stomach or damaged intrinsic factor), then high dose oral is the next best thing IMO. A study I provided earlier shows that 1000mcg oral yields about 13mcg absorbed into the blood.(the remainder is excreted in the stool. This is about 2.5 times the RDA. Injectables only last in the blood for 72 hours, and the excess is excreted, since only minute micrograms can be handled at a time by the systems in the tissues. The same study showed 145mcg in the blood following an injection of 1000mcg. So people getting injections do not all get lasting benefits that way. If you read the whole B12 thread you will find those people who didn't do well on injectable ALONE. Quote:
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The book "Could it be B12" came out originally in 2005.
There is a second ed. in 2011, but I don't see mention of updated material, just a reprinting. It is possible the newer edition has newer information. This youtube I believe is from the book you have, but I am not positive: https://www.youtube.com/watch?v=BvEizypoyO0 It is not complete however, and does not get into MTHFR mutations or much of the methylB12 information. |
Correction
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mrsD, thanks much for the correction, as well as the additional venues for purchase. It appears my heart was in the right place, while my head was in some other location--especially since the proper name spelling is plainly and prominently on a written list not 8 inches from my left elbow while at my keyboard. Apologies to all for the careless misinformation and now obvious omissions--can't get away with blaming this one on my PN. |
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