advice on starting an intense treatment protocol

[Ambrosia_angel]

I made a protocol a while ago but didn't end up completing it and put it on hold. Now I'm ready to start this seriously and I'm feeling a little better so I can type more.
Right now I don't remember anything about why all the supplements are there. Can someone help me make one please? I don't know the cause of my cfs but I have really low energy and muscular symptoms. My cause was a Mycoplasma chest infection and I've had one more since. I also have a Candida infection.
I want to add lactoferrin as well which apparently helps with Candida. I also want to add nutricology nt factor if it will definitely help as I'm willing to spend money on stuff that definitely improve people.

Btw I don't have any access to a cfs Dr or any blood test advice that tells you if you have the mther gene etc so I'm doing this on my own based on symptoms. One thing to note is recently I had a blood test which showed I am low on alk. phos ALP once in October and one last month said 47 & 49. The average is 60 - 425. Can I take a supplement to improve this?

I made this beforehand
"Hi everyone so I made a little treatment protocol based on both fredd's and rich van's. Could I please have some advice? Still learning.

From iherb.com

• Jarrow formula, methyl b-12 5000mcg (60 capsules) maybe hydroxy b-12 if it doesn't go well.

• Solgar, folate as metafolin 800mcg (100 capsules)

• Source natural, megafolinic 800mcg (120)

• Now food, lecithin (100)

• Potassium"

Now I put together :

• nutricology nt factor energylipid powder

• Hydroxocobalamin

• Methyltetrahydrofolate

• Formytetrahydrofolate

• A new diet, either paleo or (maybe raw) vegan diet. I will get my protein from quinoa if I go vegan. (Which is better?)

• A decent multivitamin (advice on the best ones?)

• Lactoferrin, maybe d-ribose, c10 q enzyme?? good idea or not? Any other supplements which help which will help?? I'm mainly looking at the lactoferrin.

Does this look good? How can I improve my health paused on my symptoms?

 

[peggy-sue]

Waiting to get shot down here, by proponents of veganism and vegetarianism, who have their own (and highly commendable) reasons for choosing this lifestyle, but vegetarianism and veganism are not recommended for PWME.

The sort of diet that should be followed is low carb, but high fat and protein.

I'm not on any protocol, I take a few supplements which my own trial and error have proven themselves to be effective for me. I don't take the ones I tried which made me worse or had awful side-effects.

Sublingual B12 (as cyanocobalamin) works for me.
It cured the brain-fog pain I'd had for 3 years in 30 minutes.
When I stopped taking it for a while, (a couple of months) I got a black hairy tongue, oral thrush and sores in my mouth which wouldn't heal.
I started taking it again and my mouth cleared up within days.

I take a high dose of EPA and evening primrose every day.
When I stopped it because of running out, I rapidly developed an invisible suit of lead and everything became so much horribly harder to do. I hadn't had that symptom for 7 years.
Within a week of taking it again, that lead suit has gone again.

I take magnesium, (as citrate) because I had a lot of troubles with cramps and rsl, it helps a lot with that.
I take calcium to balance the magnesium to protect my bones (I'm post menopausal).

 

[Cheesus]

@peggy-sue Is that VegEPA, out of curiosity?

@Ambrosia_angel Paleo is the way to go if you're considering diet. I think Chris Kresser has a really good paleo diet as it is entirely about finding the right diet for you rather than following a rigid protocol. I have just started it. Veganism is not the way to go - there are so many nutrients in meat.

I can't comment on the rest of your protocol, other than to say I would go with the mitochondrial support stuff you mentioned at the end. Dr Myhill's site is really good for that. I find D-Ribose helps me and have just started a few other of those things (too soon to tell on those). Check out Radio's thread for some really useful information too.

 

[Cheesus]

Not sure about multivits either, but I have found Citramins II by Thorne to be an excellent multimineral. I tend to take my vitamins separately (no reason for this other than it's the way things have fallen).

 

[peggy-sue]

Yes, it's VegEPA I take.
Very early on in being sick, and long before I started researching ME properly (I was too busy looking after my Dad at the start) I did find a charity shop in Edinburgh, the ME Foundation, it was near my Dad's.
The lady running it gave me a loan of her copy of Basant Puri's book, which recommended taking it.
I wasn't sure about his theory of ME - it's now known not to be right, but I still decided to take the stuff.

I reckoned it wouldn't do any harm and would only help me to be as healthy as I could be with ME. I was in a position to be able to afford it, because I have a very supportive, working partner.

I have since discovered, when not taking it, that it helps me massively.
I don't neccessarily like recommending it, because it is a specific company's product and because not many of us are in a position to be able to afford it.

Incidentally, The ME Foundation was shut down. It was supposedly because of "irregularities" in the staff being paid. Personally, I suspect a witch-hunt. A certain "sharp" doctor was operating in Edinburgh at that time, and the lady who was running the shop was giving out proper biomedial information about ME and trying to find out about more. Not that there was very much then, not compared to now.

I've never tried D-ribose - the price scared me too much. A carnitine complex helps me avoid PEM, but I can't afford to take that all the time, to help with improving basic functioning.

 

[Ambrosia_angel]

Is quinoa a good source of protein?? I don't mind eating meat but I tried low carb high protein and it did nothing if not made me worse. On the diet I'm not going to be eating lots of fruits either. It will be low sugar etc. The one thing I haven't tried is no meat and I'd rather get protein from veg to see how that goes?

How does cyanocobalamin fit into methylation? I know from before that some stuff aren't go because they block the something.

This vitamin looks great. Citramins! Would any of the vitamins in it cause blocks?

 

[peggy-sue]

I know absolutely nothing about methylation. I'm in the uk, (Scotland, so despite there being the good practise guidelines, there really is nothing else. No ME centres, no CBT, no GET, no tests, just go away and rot.)
I haven't had tests done, haven't sent any tests to private labs outside the uk.

I just tried taking the version of sublingual B12 that I found in my local health food shop, Solgar.
It worked for me. I've been taking it for years, but I got the idea of it being recommended from Dr. Myhill's and Hummingbird's sites.

I know some folk can't take that version.

 

[Ambrosia_angel]

Is your ME severe or is it mild if you don't mind me asking? I just want to know if it works with severe ME.

 

[Ambrosia_angel]

Does anyone know a supplement that will help with muscle and finger/toe twitching? Mine has become really bad recently?

 

[justy]

Does anyone know a supplement that will help with muscle and finger/toe twitching? Mine has become really bad recently?

Magnesium - a very important mineral for PWME. Taking mag cured my rls and cramps within a month or two and they have never come back.

 

[peggy-sue]

I'm severe end of moderate.
I get up and dressed every day; but have to juggle between being clean or being fed or getting outside for a little bit.
I'm unable to work.

Magnesium helps with muscle twitches, cramps etc., (as I said in my first post )
I started taking it because of cramps and restless leg syndrome and the sorts of sudden leggy twitches that throw you out of bed... it disturbed what little sleep I was getting at the time.

I use Magnesium citrate, but I think some folk prefer other versions. The citrate (from Solgar) is fairly cheap and I do find it works.

Magnesium oxide is just a major laxative. The citrate does have this effect a bit, but I'm used to it now - and it counteracts some prescription painkillers I'm on for something else.

 

[Ambrosia_angel]

Thanks justy & Peggy sue. I really don't need laxative as I have tummy issues!

Hi @Radio I hope you don't mind me tagging you but I need a little advice on the treatments I have put together as I've used your protocol as help.

• Jarrow formula methyl b-12 1000mcg
• Solgar metafolin 800mcg
• Source natural megafolinic 800mcg
• Laktoferrin nuricology with colostrum
• nt factor energylipid nutricology
• Magnesium citrate
• A multivitamin maybe pure encapsulations?

 

[whodathunkit]

Not Radio, but I can tell you that Jarrow is not considered "top" brand of methylcobalamin any more. Try Enzymatic Therapy (1000mcg/tablet) or Country Life Methyl B12 product # 6304 (5000mcg/tablet WITHOUT folic acid, if it's not #6304 be very wary. It will say #6304 on the back of the label).

Not sure why you've got two sources of methylfolate in there. The Solgar should be sufficient. It works very well for most who use it (me included).

Also, FWIW, I'm not a fan of paleo. It doesn't agree with everyone and I was one of those. It caused me problems and can cause many people problems, particularly if you have a messed up liver. For diet I do best on some meat/fish/poultry, and fruit. Very few veggies. I also like milk a lot but realize not everyone can drink milk. But if you can tolerate milk it's a great source of B vitamins. Esp. if grass-fed, organic, and non-homogenized. I think it's the homogenization process that causes the problems in a lot of people.

Finally, if you have any "female problems" be alert for increase in symptoms after beginning anything with colostrum. Colostrum really makes my fibroids act up. It may be just fine for you but throwing it out there. I've heard so many good things about it I really want to be able to take it, but just can't.

Good luck!

 

[Radio]

Thanks justy & Peggy sue. I

Hi @Radio I hope you don't mind me tagging you but I need a little advice on the treatments I have put together as I've used your protocol as help.

• Jarrow formula methyl b-12 1000mcg
• Solgar metafolin 800mcg
• Source natural megafolinic 800mcg
• Laktoferrin nuricology with colostrum
• nt factor energylipid nutricology
• Magnesium citrate
• A multivitamin maybe pure encapsulations?

Hello Hello,

We need to try and look at all contributing factors before we can customize a protocol and nutritional regimen. I don't mind helping you if you want to have a private conversation.

 

[Ambrosia_angel]

@whodathunkit I was trying to find two sources of methyltetrahydrofolate and formyltetrahydrofolate. I thought I had found them both :s

I actually only eat skimmed cows milk. It's the size that's the problem with the organic one as I'm the only one drinking it so we often buy the small non organic one too. Does colostrum mess up periods? Since I took evening primrose for a little while my temperament has been fairly good leading up to my period so I don't want that to start again.

 

[whodathunkit]

@whodathunkit I was trying to find two sources of methyltetrahydrofolate and formyltetrahydrofolate. I thought I had found them both :s

I actually only eat skimmed cows milk. It's the size that's the problem with the organic one as I'm the only one drinking it so we often buy the small non organic one too. Does colostrum mess up periods? Since I took evening primrose for a little while my temperament has been fairly good leading up to my period so I don't want that to start again.

Colostrum does not "mess up periods", per se. But it does promote some growth factors that may have an effect on uterine fibroids. It may be fine for you. Lots of people love colostrum and it's done them good. I was just saying so that if you have fibroids and got any weird female symptoms while taking colostrum you might look there. That's all. IMHO you should try it and if all is well then great.

Okay about the folate. I honestly haven't split that hair between the two forms and so can't and shouldn't comment further about that. You gave me something else to research, though.

Also, can you get organic, non-homogenized, grass-fed milk? There are things in the milk fat that are good for us and it doesn't make you fat esp. if it's grass-fed, and I've read that skim just isn't the best choice. I'm beginning to form the opinion that the homogenization process is one of the biggest problems for people with "lactose intolerance", but I can't prove it. You can get quarts of non-homogenized grass-fed organic milk at Whole Foods if you have one near you. It's a little pricey but worth it if you can swing it. Plus, the "cream top" that gathers at the top of the milk bottle...deeply yummy.

 

[Ambrosia_angel]

Hi I'm going to make an order for some products and have this.

Deadlock quartet

• Dibencoplex (Dibencozide Coenzyme)
• Solgar, folate as metafolin (methylfolate)
• Enzymatic Therapy (methylcobalamin)
• Doctor's Best (L-Carnitine Fumarate)

Extras

• Potassium gluconate
• Magnesium (which I'm taking on and off already)

Is this okay? Do I need a multi vitamin? Which on does everyone use? Also do I need nt factor?? Thank you for reading