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Would B-12 shots help or hinder the Freddd protocol?

PeterPositive

Senior Member
Messages
1,426
I've always wondered why Zinc supplements don't also contain a small amount of copper to avoid imbalances between the two.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
I've always wondered why Zinc supplements don't also contain a small amount of copper to avoid imbalances between the two.

taking it at the same time would create mal absorption of both. Better to take them at least a few hours apart so they don't compete for each other in digestion and enigmatic production.
 

PeterPositive

Senior Member
Messages
1,426
taking it at the same time would create mal absorption of both. Better to take them at least a few hours apart so they don't compete for each other in digestion and enigmatic production.
Thx. Would "enigmatic production" be "enzymatic"? :)
 

whodathunkit

Senior Member
Messages
1,160
I come late to the game but thought I'd put in my $0.02.

@sueami and @Martial: I loves me my methylcobalamin injections. The first one I got was like a revelation. I had done cyanocobalamin injections on and off for years, with zero effect ever. I kept getting them because everyone said they were great and that B12 was crucial.

But about 15 minutes after my first methylcobalamin injection I was like "Oh, sna-ap! THIS is what everyone raves about when they say B12 gives them a boost!" :D That first injection is really what motivated me to dive headfirst into all of this. It gave me my first real hope that I actually *could* feel significantly better than I have been feeling for the past umpteen years, rather than just enduring the decline and no way to fight it.

Luckily I have a good compounding pharmacy within five minutes walking distance of my house (I live in the States). Also luckily, my insurance has paid for the injectable since my hematologist kindly prescribed it for severe anemia. But I'd pay out of pocket for it because I think it's that valuable. Not only is it working for methylation but it's also done wonders for my anemia. My ferritin is climbing nicely. Before I started mB12 I couldn't hang onto iron for crap. I even had an iron transfusion to go along with the cyanocobalamin injections, and nothing. 3 months later my iron levels had bottomed out again.

@Martial, dunno about mB12 for Lyme, but how's your iron?

Found out from Freddd that injectable methylcobalamin is very heat and light sensitive. If you get some, wrap your bottle in tinfoil immediately upon receiving it to block out light. Then put it back in the box and put it in the fridge. All methylcobalamin is heat-and-light sensitive, really, but the aqueous solutions are hypersensitive.

Inject immediately upon pulling the dose into your syringe. Don't walk off and leave your syringe sitting for a few minutes. If you're injecting twice per day either use separate syringes or wrap the syringe in tinfoil, too, then put it back in the fridge until your second dose.

Also, if you have it shipped, having it packed in ice and overnighted. Freddd says mB12 can degrade into hydroxycobalamin fairly quickly, and hydroxy isn't as good for a lot of people. My understanding is that people with certain snps do better with hydroxyl but if you don't have those snps mB12 is your better choice.

Also agree with @ahmo about B6/P5P. It's crucial to energy production, and I tend to forget about it a lot when posting. I got a lot out of it after I added it to my mB12 and mfolate regimen...although when I tried it awhile back without the other supplements, it just made me cranky and anxious. You definitely need the right cofactors for all this stuff to work properly.
 
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whodathunkit

Senior Member
Messages
1,160
@sueami: forgot to say yesterday that if LCF is wiring you out then open the capsule and only take part of it. I used to take half a cap per day for a few months, until I got straightened out.

Also, if you can't get shots, then just try upping your sublingual intake radically. It's kind of a drag but it's better to have daily doses of mB12. Daily intake is better since it's got a relatively short half-life in the bod.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
Thanks, whoda -- I am trying half a cap and so far, so good, I think. Hard to tell what is potassium deficit and what might be other reactions, but so far I'm seeing a pretty fast calming of anxiety and heart palpitation-type feelings after 400-500 mg of potassium chloride.

I did email my doc about b-12 shots and i'm meeting with him on monday to review my snps again. I have a confusing combination of vdr Taq ++, some pretty heavy BHMT involvement and a hetero cbs that make it very unclear to me whether I would fare well or poorly on high mb12. I might not do well, though I do remember that one shot a year ago with great fondness....
 

whodathunkit

Senior Member
Messages
1,160
@sueami: you might be one of the ones that benefits from hydroxy. Seems like I've read something about some of those mutations together and hydroxy, although I didn't zero in on the info since I don't know my snps. I will say that if you got a shot at the docs office that benefited you it was more likely hydroxy than methylcobalamin, since mB12 is pretty unstable and thus too expensive for most doctors to keep a good supply of. From what I understand it can degrade from mB12 to the hydroxy form with cumulative light exposure of under an hour, and those brown injection bottles don't really keep out UV very well. They're better than clear but they still let some in.

And it was likely not cyanocobalamin, either, since that benefits so few people here. But I have seen posts that some people get benefit from it, so maybe you're one.

Have you ever done or can you do between now and Monday research on Yasko's protocol? She is a proponent of hydroxy, I believe. Also Lynch. Rich Van K's docs might have something in there, as well.

If you do get the right form of mB12 it can be a minor miracle, for sure. Hopefully your doc will give you a script that you can get filled and get "stocked up" before vacation, and then keep yourself in dose with sublinguals. Although if you get injectable hydroxy it will probably travel pretty well. Aqueous MB12 probably wouldn't travel well at all through an airport, although if you're going other routes of transportation maybe it wouldn't be so bad.

Just rambling on about that because I've wondered from time to time WTH I'm going to do with all these supps and esp. my injectable mB12 when I have to go somewhere by any mode other than personal vehicle. :confused: In the past I've been through the airport with what I thought were a lot of supplements, but I'm approaching the crazy old supplement lady zone these days. And that's without a brick of ice to keep the mB12 cool.:eek:
 
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sueami

Senior Member
Messages
270
Location
Front Range Colorado
Hahaha, @whodathunkit !

This is the third year in a row that my parents have decided to spend their inheritance early by taking my sister, her boys and my family of four to Europe. The first year I traveled completely carefree (well, as care free as the mom who has to do all the packing, travel arrangements and inter-personal dynamics management can), as none of my health issues were very big. Last year, everyone thought I was a nut for travelling with my anti-candida diet food and supps.

I can only imagine the intervention they would try to stage if I showed up with hypodermic needles full of B-12 this year! Although, frankly, if that gave me the energy to get out and about every day, I would totally do it.

I have been trying to get through Ben Lynch and Yasko's voluminous info on these snps. I need to take notes though before my appointment on Monday or I will remember only a fraction of the questions I want to ask.

Hydroxycobalamin has been recommended to me also, by Ahmo, I believe. The only reason I haven't tried it out yet is Freddd's strong negative opinions about it, but you're probably right that I got hydroxy last year -- I think the functional medicine clinic I went to would have known better than to use cyano.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
So, just in the interests of sharing info, my doc did indeed prescribe methylb12 shots -- based on my mtrr snps he felt i need that more than hydroxycobalamin. He also thinks that I'm overdoing the folate. I'm up to 4mg (5 tabs a day) and he thinks some of my symptoms that aren't improving are a result of too much folate and not enough methyl groups. I'm going to stop mfolate altogether for several days, until the b12 shots arrive in the mail. If I feel significantly better, he wants me to restart at just 400 mcg and hold there. If I didn't feel noticeably better, he wants me to restart at 400mcg and titrate up to 1600mcg while I'm taking the shots 3x week for the next 3 weeks (until I go on vacation.) Since I have not improved over the past month (and have slightly declined) I'm willing to give up Freddd's approach and try a low-and-slow, particularly with this damned vacation on the horizon.

He also thinks I am overbreathing and that may be driving my need for potassium, rather than the methylation cycle startup. There's a local practitioner who can measure exhalations for CO2 levels and offer ways of shifting breathing. I'm not a shallow chest breather, but I have been doing a lot of deep breathing to deal with anxiety and as part of a body scanning meditation I've been doing lately. Not sure if I'm going to go to him or research this whole deal on the interwebs and see if I can find breathing advice that way.

He also reassured me that the 1500 mg potassium chloride pills I have are in no way dangerous to my digestive tract and that I should keep taking them, at least one a day, two if symptoms don't improve. (He said he woke up in the night last night with hypo symptoms and popped *four* of them, and he said his 80-something dad takes them as well, without problems. "Potassium is your friend," he said.)
 

whodathunkit

Senior Member
Messages
1,160
@sueami, sounds like you have a great doctor! Congrats!

Let us know how it goes with your mB12. There aren't any compounding pharmacies near you? Are they overnighting your prescription with ice?

Re: breathing: check out Buteyko breathing method. I do it. It's helped me quite a bit. I stopped doing it only because it does take some time out of your day. But I've been thinking about starting it again.

Here's a good book that can be downloaded instantly in Kindle format if you have an ereader:

http://www.amazon.com/Close-Your-Mo...d=1402412995&sr=8-2&keywords=close+your+mouth

lf you prefer hard copy then just run the title "Close your mouth" through Amazon search. It gives you the paperback format as well.

Or you can just run "Buteyko breathing method" through the Amazon search and see what's available. There are several good-looking titles. This is the only one I personally have, although I may buy another one or two in the near future to see if they have anything to offer. I like this book because it's short, sweet, practical, and inexpensive.

Turns out the deep breathing craze of the '60's and '70's did us no favors at all. This book tells why deep breathing is bad for us and more importantly, what to do about it.

Anyway, glad to hear you got a good doc and you're getting straight.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
I did find Patrick's books and downloaded a different one with, I think anxiety in the title, to my kindle. Going to read through it today.

I am absolutely shocked at how hard it is for me to stop sighing, yawning and taking deep breaths! I have to fight constantly to keep my breathing moderate.

I think this may be a big part of my exercise intolerance and windedness and sensation of palpitations when I walk a small distance. I used to have it first thing in the morning but it would improve or even disappear as the day went out.

For the last two weeks I've been doing a daily meditation practice for a freaking hour and incorporating a lot of deep breathes to move prana. I can't believe how much I've been deliberately breathing the wrong way for years -- for meditation, yoga, to calm anxiety, good lord.

I also noted some itchy, hive-like reactions in the night. I think that might be a reaction to low folate. I may re-incorporate folate sooner than the arrival of the b-12 shots.

No, the shots are coming from Arizona, because it's the cheapest compounding pharmacy my doc knows of. He didn't think temperature mattered but only light exposure. I may call him up and see if he can send to request to a local pharmacy instead, although there's no guarantee they're storing it properly either.
 

whodathunkit

Senior Member
Messages
1,160
@sueami: Heat absolutely matters, especially from Arizona in the summer(!). mB12 is fairly delicate stuff. My compounding pharmacy is so close to my house that it would literally take me less than 10 minutes to *walk* there. But even though I always drive (thus taking about two minutes to get there and two minutes to get back) and go straight home after picking up my scrip they always send my mB12 with a little block of ice in plastic.

FWIW, mB12 is typically brewed from the cobalamin bacteria "on demand". They don't keep it sitting around on the shelf waiting to be bought. It's fermented in a dark room with red light that the bacteria isn't sensitive to. Then it gets refrigerated until pick-up.

Not long ago I left my bottle of injectable out on the kitchen counter for the entire day while I was at work. I freaked out when I got home because I still had 15 days left before I could get a refill and thought I'd ruined that batch. I called the pharmacy and they said as long as it was in room temperature/air-conditioning and shielded from light it was still good, BUT if it had been exposed to any heat above room-temp air it was probably bad. I kept it, it seemed fine.

That said, if this compounding pharmacy your doc called does a lot of out-of-state prescriptions they probably know all this and will take care with your order. Is it possible you call them and find out how delicately they treat it?

But I would go local if I could, just to be safe. Do you mind me asking what your formulation and dosage is? For example, 1 mg/ml of solution, with 1ml/day injected, or what? My current script is a 12mg/ml solution, injecting 0.4ml/day for 5mg of mB12. But I've been injecting less lately because my body doesn't seem to need as much as it did. Next visit to the doc I'm going to request a new prescription with a less dense solution. The denser your formulation, the more expensive your script.

Also, are you paying out of pocket or will insurance cover? That makes a difference where might want to get it, too.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
I'm going to query the pharmacy right now about how they ship. With any luck they'll ship with a cold pack and it will arrive quickly. Otherwise, I'll contact my doc and see if he can phone in the script to a local pharmacy. In a quick search online, it sounds like some people believe that if the MB12 has a preservative, it doesn't need to be kept refrigerated. So I'll ask about that as well.

I believe I'll be getting a 1 mg/ml solution and am to take 1 ml 3x a week for the 3 weeks until I go on vacation. (He might have had me take it longer than that if the trip weren't occuring. I asked whether I should try to take it along on the trip and after thinking about it for a while, he thought it wouldn't be necessary, based on the levels that should have built up in my body by then.

I'm paying out of pocket. This doc operates outside the insurance system. My Kaiser doc politely but bluntly told me he does not try to pursue any treatment of chronic fatigue complaints, that he considers it a black hole of time, money and effort and that I shouldn't waste my time on treatments outside the system. I won't be going back to him for my annual checkup next year.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
It turns out the pharmacy ships the mb12 overnight fed ex in an insulated box with a cold pack. It's going to cost me $20-$30 for the shipping, but at least it will arrive undegraded. I think I will call around to local pharmacies just to compare pricing.
 

whodathunkit

Senior Member
Messages
1,160
YOW about your Kaiser doc. :bang-head: When I translate that statement, I hear "Chronic fatigue patients make me look bad and make me feel less like a God because they don't respond well to the priceless pearls that drop from my lips or take every single thing I say as gospel, plus they force me to think outside the box and learn things I'm too innately lazy and/or prejudiced to learn at this stage of my career or maybe ever. I'd rather use the time to get in an extra nine holes." Sounds like a real douche. :mad:

Reason I asked about price is that a 1mg/ml solution is pretty reasonably priced. I could pay for that out of pocket, although not for my 5mg script...that one's really pricey,.

So it might actually be cheaper for you to buy locally if you figure in the cost of shipping per bottle.
 

pela

Senior Member
Messages
103
Throwing in my two cents worth about pharmacies. Pick one that fills lots of MB12 prescriptions. They are more likely to know what they are doing than a compounding pharmacy that has never made a batch of MB12. Some compounding pharmacies don't even have the facilities to make Mb12. None of my local compounding pharmacies make mb12, although one offered to do so, so I order it from out of town with 2 day UPS shipping. I order two bottles at a time to save on shipping costs. I wrap both bottles in foil and stick them in the fridge. I also wrap the syringe in foil when I do the shot.

I get 1000 mcg/ml, in 30 ml bottles and do a one ml shot per day.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
Whoda, lol! Yeah, I was sort of torn between being outraged and somewhat impressed that he was willing to be that blunt about his unwillingness to put any effort into treating me. I chose him because he was an osteopath and I thought he might think more outside the box than the average doc. Clearly I don't know much about osteopaths. I'm hoping to find a more skilled and curious doc for next year's checkup, but if not, I still have this great doc I"m seeing on my own. Who needs an IRA anyway, right?

Pela, thanks for that feedback. I will def ask local pharms how often they make MB12. I suspect I"m going to have a lot of MB12 left over on return from my vacation, if I'm getting 30 mls too. Anyone know how long that lasts if refrigerated and foil-wrapped?
 

whodathunkit

Senior Member
Messages
1,160
Also strongly agree with @pela about the pharmacy being experienced at brewing injectable mB12. Until I got my prescription I assumed all compounding pharmacies did it, but they don't.

Also, I seem to remember reading that Freddd got his scripts from someplace in Arizona. So maybe it's the same place. At any rate, if your doc recommended it then it probably does a pretty good mB12 business. The biggest drawback is probably the shipping charge.

And I totally sympathize about the IRA. My retirement's pretty much shot at this point, too, and for the same reason. But the way I have it figured, what's the point of a long lifespan if you know for sure all you're ever going to feel is lousy and then lousier? That's the road I was on.

But now at least I know I can feel better, and I have hope that whatever years I have left will be of higher quality before the inevitable decline kicks in. They say my great grandfather keeled over while he was still working on a washing machine in his fix-it shop, cigarette still hanging out of his mouth, at age 95. He was still caring for himself, living alone, independent. Except for the cigarette and the fix-it shop and the washing machine, that's how I want to go. ;)
 

pela

Senior Member
Messages
103
It should have an expiration date on the bottle, The batch I bought in early May, which has no preservative, says it expires in late August. Yours should keep in the fridge for a few months. Of course you always use a new sterilized needle!