start up on methyl b12

[suzanne]

I have been on fredd's protocol for 10 days and am having some start up difficulties. I am taking:

• Jarrow methyl B12 sub ling 1mg- 1/4 tab in am and 1/4 in pm
• solgar metafolin 600mg ( slowly titrating up)
• omega 3 fish oil- 3000mg
• B6 100mg
• P5P 50mg
• B2 250 mg
• zinc 75 mg
• cal/mag 1000/500
• vit E 400 iu
• vit C 3000mg
• SAM-e 400mg
• selenium 200mcg
• probiotics

[/LIST]
By way of background I have had CFS for 10 years- I got it suddenly after a gastro upset in indonesia. My symtpoms have primarily been insomnia,daily headaches, chronic migraine ( 5 week) body aches and fatigue plus in the last few yeas some numb and tingling extremities. One year ago, after I had been on 6 months of abx, I developed an oll over body itch- it plagues me still and I cannot get rid of it- I did 3 months on Nystatin and 6 weeks on iflucan and still I itch- in fact it is getting worse.

I went on the marshal protocol for 2 years in 2006 2007 and my symptoms went away significantly but then returned againin 2008. I have tried stronger antibiotics since and they make no difference to my condition. maybe the marshall protool with the benicar did something to help my immune system- dont know but it is no longer of any help.
A year ago I did the yasko genetics. I did about 3 months on that programme with hydroxy B12 ( 4- 5 mg a day) and a small amount of methyl folate ( 400mg). It did not improve or noticably worsen my condition so i stopped ( I got pancreatitis and that took over my life for a bit). I have a defect in relation to the gene for folate and will therefore only take supplements with methylfolate and so have staye away from B right. I do not supplement potassium as it burns my stomach even when i take it with meals.

I have now had to retire from work at 52 yo as I am too unwell to function. I continue to have all the symtpoms described above plus burning skin and itching all over- this is driving me mad- it gets worse if i take liver support supplements or try and detox eg treat candida. So at the moment I am just doing the Fredd protocol and trying to ride out the difficulties with that without adding extra things like candida treatments.y dr has insisted though, that i start with 1/2 tablet of a "hepatic detox" as he says that my testing does show i have problems with liver detoxification and he thinks if I can build up on these tabs they may help the itch?

I have noticed an increase in my body itch, headaches since starting this protocol. I also have some nausea and insomnia is a bit worse ( 3am before I can get to sleep- not helped by the itching which does not respond to antihystamines). The first few days i had sinus drip which was new and has now stopped. i also had a few teeth ( the ones that were crowned) that were really painful and ached- this is no subsiding in the main. The itch and headaches and insomnia are my worst problems- I have noticed tht I am going a good few days between migraines- early days but perhaps something is shifting? If only I can stand the itching!!!! I know I am high histamine andan undermethylator and so my dr therefore has me on zinc, same-e, B6, P5P and cal/mag- been on this 8 weeks ut cannot tell any improvement.

As to supplements vit D- they make me feel really unwell even at low doses- at one stage I had built up to a dose ( over 6 months) of 4,000 iu a day ( under the care of a neurologist) . My itching started aroound this dosage and when i first cut ut the vit d the itching stopped but it soon ( within a week or 2 ) started back up again. Perhaps this suggest that my liver may be involed...not sure. I have alos had to give up my t3 meedication for thyroid as any from of t3 makes me itch- again i have hear that this may be a "toxic liver" issue....not sure if it is my liver or candida- or both ( most likely). Interesting to, that when I take any metal detox substance, I alos itch ike crazy eg DMSA, zeolite, modified citrus pectin, humifulvate. This is getting too long....
So my questions are:
Should I stay on the dose of methyl B1 at 250mg twice a day for a while longer or should I be trying to increase this?
Is it likely that the itching that I have had for1 2 months - which now includes burning skin sensations as well, is likely to get better on this protocol, as i proceed?
My plan is to get to titration of 5 mg of methyl B12 before I add adenosyl- does this sound ok?
Any other thoughts about my titration and the ITCHY skin problem?
Any advice on any aspect of my programme would be helpful. Thanks so much for any input- I have read all the posts and am really hoping that this protocol might help- I seem to be in a downward spiral and my family are looking on desperate or any sign of recovery ( me too- I feel the pressure) :Retro smile: Thanks on advance, Suzanne

 

[determined]

Hi Suzanne,
The nausea,headaches, and sore teeth sound famiiar! I had those symptoms too when I started mB12 and methylfolate. All lasted for several weeks, along with an increase in multiple chemical sensitivity.

more later!

 

[aprilk1869]

These are just a few thoughts:

You're taking a heck of a lot of b6, p5p and zinc. Why? I know is that there are people who take large amounts when trying to deal with KPU/HPU.

Because you're not taking a b-complex there are some b vits you're missing out on - b1, b3, b5, biotin, PABA, inositol and choline. They can all be important.

You're getting calcium and magnesium at a raio of 2:1. This might not be suitable for everyone and people with ME normally have a magnesium deficiency and therefore don't need to supplement with calcium. So you might want to cut out the calcium or try taking a lower dose.

Problems you're having with vit D might be because it's showing up a magnesium deficiency.

Vitamin D has no known side effects. If one experiences any of the following symptoms due to supplementing with vitamin D - or with sun exposure - a magnesium deficiency is most likely the reason why:

irritability or anxiety
nausea
headaches
insomnia
fatigue
muscle cramps/twitching
weakness
constipation

http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/

You need to be taking vit A from fish source if you're not getting any in the omega 3 supplement. Vit A is really important for the skin and probably other things.

I'm sure that Rich has said that when people get a rash with methylation supplements it's because of toxins coming out of the skin.

There's no need to wait before taking the adb12. You can start taking it as soon as you like. If it's the Source Naturals one you're going to take then probably 1/4 of a lozenge a day should been fine to start with.

 

[RustyJ]

Suzanne, couple of things struck me right away. I don't know if you worked up to dosages. You seem to be taking a lot of zinc. You may need to titrate it. I am having trouble with just 6mg/dose. Similarly with magnesium. Many ME sufferers have a lot of trouble with zinc. Also you may need to take potassium. There are a few threads on this. Potassium is an important part of Fredd's protocol.

I started of taking a few of the vitamins but had to throttle right back and introduce one at a time to gauge effects and modify accordingly. It takes a lot longer, but helps avoid the frustrations of not knowing which one is causing problems.

 

[suzanne]

Hi guys,

Thanks for your various inputs. I was put onto the SAM-e 400mg, B6 100mg, P5P 50mg and zinc 75 mg and cal/mcag 1000/500 by a dr that had tested me as beng high in histamine and being an undermethylator- this he said these supplements would address that. I actually cut down on his dose of B6 ( which he had at 200mg) and I will now cut the zinc back to 50mg- I titrated up slowly on zinc and sam-e. None of my symptoms changed when any of these supplements was introduced- i already took magnsium. S I dont think these supps are causing me any distress, but to be safe, I will cut them back a bit.

I will also review the cal/ mag as i, also, thought it would be better to have a 1;1 ratio given the CFS issues. Thanks for that, April. In fact I herb sell a cal/mag powder that is a 1;1 and it has a little vit D- maybe that would be a good place to start getting just a little vit D back and it would increase the magnesium

How to get the other B groups without introducing the "bad" folate for me is an issue....I will hunt round and see if I can find a supplement- I think I saw fredd refer to Douglas laboratories so i will go researching on i herb to see if i can find B supplement to fit the bill.

I will also add some vitamin A back in- I had it in before and took it out. My dr thought I was taking too much stuff.

I am interested in the adverse affects from vitamin D when there is a magnesium deficiency- I suuffered from bad headaches and nausea when I first started to titrate Vit D- I will try again in the next month or so when these initial issues settle a bit- I just want to try and introduce one change at a time, as was suggesteed. As to why the vitamin D added to my body itching, I m not sure as my blood tests at the time had me at the top of the norml range, so i doubt I was toxic, but i do have a bile flow issue from the liver and it might be that the vit d was not being broken down , given that it is a fat soluble supplement.

I will add in Ab12 when I get comfortable with what is happening just now, but when tried to add it before it made the aching of my teeth feel more inense, so i have stopped it again.

As to the potassium- I am not sure how to deal with that. I have terrible trouble with my digetive system and get immediate stomach pain when I take potassium. I have ordered a liquid potassium from i herb that is meant to be gentler on the somach, but even when I try that in drops n my wrists- it stll causing gastro distress! So I am focussed on the potassium in my diet and trying to increase it that way for now. If anyone else has potassiumGI issues and has found a god solution- PLEASE LeT Me KNOW.
Thank guys heaps for your suggestions...I just hope this programme helps my body itch which has plaued me for 2 months- I think I itch because I am ery toxic- whilst candida plays a part no candida programme has ever got rid of the 12 month itch- I hpe that by improvig methylation that the itch may disappear in time? Wishful and hopeful

 

[aprilk1869]

The b complexes that are recommended are

Douglas Laboratories B-complex with Metafolin
Pure Encapsulations B-complex plus with Metafolin

iherb also sell AOR B complex but it contains 5-Methyltetrahydrofolate rather than Metafolin specifically. It's difficult to say whether it's as good because of it.

Many people in the UK buy Biocare B-Plex with no b12 or folic acid in it.

Freddd has said many times that mb12 and metafolin greatly helped his gut and skin issues so you might want to work at increasing mb12 as a priority. Some people like to take a slow approach however others feel that it's best go faster in order to increase healing and prevent a long, drawn out start-up.

You might not be getting enough b12 at the moment to be in "rapid healing" in which case potassium might not be an issue for you yet. I've heard of people here who feel they actually need more sodium due to adrenal fatigue issues and that potassium makes them feel worse.

 

[Cindi]

Vit d3 gives me itching.
best wishes.