Sudden shortness of breath- b12 malabsorption? potassium?

[Athene*]

It's all so expensive isn't it! I didn't realise that LCF was used for psoriasis. Ta for tip. I'm almost afraid to ask my regular doc re copper. Hard enough to get regular thyroid tests, Full Blood Count etc. Then everything is 'normal' of course even with TSH of 6.5....
Last question! How much copper did you supplement with, or what type? And can I sneak in one more (!!). Did you just get Cu tested or cerruloplasm too? Thanks

 

[Johnmac]

It's all so expensive isn't it! I didn't realise that LCF was used for psoriasis. Ta for tip. I'm almost afraid to ask my regular doc re copper. Hard enough to get regular thyroid tests, Full Blood Count etc. Then everything is 'normal' of course even with TSH of 6.5....
Last question! How much copper did you supplement with, or what type? And can I sneak in one more (!!). Did you just get Cu tested or cerruloplasm too? Thanks

I'm trying the approach of the B12 Oils guy presently, which makes it cheaper (much less folate because more B2; no carnitine). So far so good.

I gather that the thyroid test ranges are also mostly wrong.

I didn't test for copper, but being pyroluric probably should have. You are meant to test for ceruloplasmin as well - if you're pyroluric at least.

I take Solgar chelated copper 10 mg/day.

 

[Athene*]

Thanks for that.
I guess you know already that @Freddd advocates low b2 to avoid insatiable potassium demand? Maybe you've already gone down that road...
Yes, you're dead right about those pesky thyroid ranges. As far as I can see there is no scientific basis for most medical reference ranges - they include sick people in the sample cohorts and then form useless bell curves with cut-off points. I'm now self-treating with t3 and just using doc for tests. Same with most things now - self-treating. I would love some guidance though. Am searching for a decent naturopath. Preferably one who has more than a 'certificate' in nutrition and a cool website...
I have to admit I'm scared of copper without proper tests. I read somewhere a build up can cause dementia (my mother has severe dementia - could be low b12, thyroid etc too though). Looks like you really needed the copper Glad it's working

 

[Athene*]

@Johnmac And one other thing re copper - have you noticed one of @Freddd's last posts recently (Feb 9) was after his copper supplementation of 4 months duration. He said 'However, there is another possibly confounding item, l-methylfolate. Within the past two weeks I both increased methylfolate and have alternating glucosimine and calcium salts periods trying to find an optimum.' Wonder what's going on there? Maybe the Cu causing necessity for particular type mfolate-salt, or maybe some other mfolate issue unrelated to copper?

 

[Kathevans]

insists that men should be 130 or so and women 90 or so, no matter what the Ferritin range is worldwide.

These wide ranging numbers for iron are interesting. I'm going to go with the B12 Oils guy, Greg, too, because another woman I spoke to at a company that makes an iron supplement out in Colorado, said her levels were 220 and that she'd felt terrible when they were much lower.

I guess you know already that @Freddd advocates low b2 to avoid insatiable potassium demand? Maybe you've already gone down that road...

Here's the trouble, Athene, I've been trying to address methylation issues following Fred's protocol for about 7 months now and have never reached any sort of plateau. In fact, my sleep, while I've had the occasional reasonable night, has been uniformly crappy. And each time I titrate up to about 1600mcg Folate and 5-6,000mcg B-12, I become hyper, over-stimulated and just feel crummy.

The problem with Fred's protocol, as I see it today, is that most of the symptoms of folate deficiency--or just about any deficiency--are the same. So the folate deficiency symptoms I've been suffering to a greater and greater degree with each 200-400mcg of Folate I add, may just as easily be B2 deficiency symptoms.

I tried so religiously to keep my B2 to 10-20mg and am beginning to think that I'm only making that particular deficiency much worse. I can't say for sure until I've run the experiment myself, but somehow, I think that Folate metabolism is a big problem for me--possibly contributed to by all my MTR/MTRR snps...who knows?

My symptoms have been worse--sort of pins and needles throughout my body and a lot of joint pain and muscle weakness, along with tight, painful neck and trapezius muscles. (I know these aren't potassium issues as I take 900-1200mg of K+ gluconate/day and another 900 in dairy and coconut water--and I have no heart palp issues, which are my main symptom) Some of this I think has to do with not enough AdoB12, but more may relate to B2.

At this point I'm completely flummoxed.

Yes, finding a good doctor is key. I'm about to do another OAT test--if I can stop peeing long enough at night to get a reasonable sample!

 

[Athene*]

Hi @Kathevans Good to hear someone else with that experience re: iron ranges, and someone else from the 'flummoxed' club! There's definitely something odd about the variation in ranges worldwide, I agree. About the potassium - with me, the tight neck is one of my first symptoms, but it's not just muscle symptoms. If my potassium falls, I get weak and achy and can hardly lift my arms to the computer on my lap, then icy cold, burning feet. My final symptom is heart palps. I also get very low mood, but when I add more potassium these symptoms go away. I'm up to 2.5k potassium gluconate daily, and would hope to see that need diminish over the next months of healing - it's too much long term. Do you think that taking lots of extra b12 & folate could lower iron, by causing all this new cell building and repair? Do you have low iron too?

 

[Kathevans]

I'm up to 2.5k potassium gluconate daily

Is all this potassium making you thirsty for just plain water? I feel thirsty all the time.

My iron, at 80 in the general US range of 16-250, is considered low by the B-12 Oils guy and the woman I spoke to in Colorado. My GP, however said nothing about it, nor was it marked as 'low' on the test itself. So, people here think it's normal.

Go figure.

 

[Athene*]

How's your Red Blood Cell Count (RCC) and Haematocrit (HCT) and Haemoglobin (HB)- on your Full Blood Count section on blood test form. Every country has different names for these things! But they could point to iron anaemia too. (We even spell 'anaemia' differently here!).
Interesting about the thirst - it's completely the opposite for me. When I'm constantly thirsty and peeing a lot, it's a sure sign I need more potassium. I then do 3K or 3.2K or so of potassium gluconate (this is as well as lots of potassium food). That fixes it. Then I go back to 2.5k. About the Adenscobalamin - it raises my potassium (and folate) need to an insatiable level so I'll have to reduce that for now...

 

[Athene*]

P.S. @Kathevans - meant to say, do you mean your Ferritin is 80, or one of the other iron markers? For example, what's your Transferrin Saturation percentage? That's done here under 'iron studies' and include TIBC, UIBC and Transferrin Saturation %. Not sure how they do it where you live. It needs to be between 30% and 40% for women, for saturation of cells (iron saturation). Ferritin can be falsely raised due to the body holding it in storage because it senses invader (virus, bacteria) or other inflammation (e.g. from low b12, low thyroid etc). That storage level going high shows as high ferritin, but it can look like iron is high when in fact iron (as shown on the other tests I mentioned) is actually low. If you already know all this, please ignore! But that could explain why that woman you know felt terrible with high ferritin level

 

[Athene*]

@Johnmac - I finally found something in a haematology journal that might explain iron deficiencies for some of us here. In my case it was only when I went to high dose methylfolate and methylb12 per @Freddd that my iron (Transferrin Saturation %, RBC, HCT etc) dropped rapidly over a period of several weeks. Previous iron-studies tests were fine (except for slightly low HCT and RBC) - that was when I was on 1mg mb12 and 800mcg mfolate and was most likely not creating enough red cells to require much iron. I realise the methylation protocol induces mineral etc deficiencies but I hadn't seen anything relating to iron specifically, so it's good to see this stated here. (The rest of the article is very conservative about b12 treatment etc. It's not aimed at ME or gene mutations, just functional b12 deficiency and pernicious anaemia).

“Once vitamin B12 has been administered, the increase in red cell production will increase the demand on iron stores and, therefore, it is important to monitor – and correct – any signs of iron deficiency.” Page 5 of the article, 2nd paragraph from bottom on right side.

http://www.haematologica.org/content/haematol/91/11/1506.full.pdf

 

[Johnmac]

Kath, I went to 40 mg/day of B2, & was able to lower folate from 6 mg/day to one.

I was testing the Greg theory that the high m-folate demand only happens because most of us are B2 deficient - & when we supplement B2 you don't need much folate.

By 'working' I mean that I have been able to drop the folate dose a lot; have not had higher potassium demand (less, actually); & my symptoms (brainfog, fatigue) have improved a great deal from when I was on the higher folate & little B2. So far so good - tho a week or so isn't a long test period.

I have to say, too, that the transdermal method of delivery is way easier. And more bang for your buck (80% uptake!). Greg told me the industry experimented a lot with buccal & sublingual in the late 1990s, & found it wanting in terms of penetration/uptake; plus they could foresee the tooth decay problems. That's why it isn't widely used now. 80% uptake against 5% is a big difference, & you can feel it.

Also delivery to receptors is slower with TD, so you get a smoother & more lasting effect. Because I got a fair bit of euphoria in the first week of TD, I'd compare it to eating a cannabis cookie as against smoking a joint.

These wide ranging numbers for iron are interesting. I'm going to go with the B12 Oils guy, Greg, too, because another woman I spoke to at a company that makes an iron supplement out in Colorado, said her levels were 220 and that she'd felt terrible when they were much lower.

Here's the trouble, Athene, I've been trying to address methylation issues following Fred's protocol for about 7 months now and have never reached any sort of plateau. In fact, my sleep, while I've had the occasional reasonable night, has been uniformly crappy. And each time I titrate up to about 1600mcg Folate and 5-6,000mcg B-12, I become hyper, over-stimulated and just feel crummy.

The problem with Fred's protocol, as I see it today, is that most of the symptoms of folate deficiency--or just about any deficiency--are the same. So the folate deficiency symptoms I've been suffering to a greater and greater degree with each 200-400mcg of Folate I add, may just as easily be B2 deficiency symptoms.

I tried so religiously to keep my B2 to 10-20mg and am beginning to think that I'm only making that particular deficiency much worse. I can't say for sure until I've run the experiment myself, but somehow, I think that Folate metabolism is a big problem for me--possibly contributed to by all my MTR/MTRR snps...who knows?

My symptoms have been worse--sort of pins and needles throughout my body and a lot of joint pain and muscle weakness, along with tight, painful neck and trapezius muscles. (I know these aren't potassium issues as I take 900-1200mg of K+ gluconate/day and another 900 in dairy and coconut water--and I have no heart palp issues, which are my main symptom) Some of this I think has to do with not enough AdoB12, but more may relate to B2.

At this point I'm completely flummoxed.

Yes, finding a good doctor is key. I'm about to do another OAT test--if I can stop peeing long enough at night to get a reasonable sample!

 

[Kathevans]

How's your Red Blood Cell Count (RCC) and Haematocrit (HCT) and Haemoglobin (HB)- on your Full Blood Count section on blood test form. Every country has different names for these things! But they could point to iron anaemia too.

The number I listed for iron was for ferritin alone; all those other things were not tested--looks like a gap in my knowledge. As to the blood counts, I haven't had this done since last January, so over a year. The results were Red blood cell count 3.98 in a range of 3.90-5.03; the Hematocrit was 35.5 in a range of 34.9-44.5% [I know this is low because my son was a competitive cyclist and has higher than normal hematocrit--a good thing. In professional cycling if you go over 50, I believe you're disqualified for blood doping! Sam's tends to be as high as 48--though he says this does have to do with hydration. I think and he has amazing stamina and is a sprinter] my Hemoglobin is 12.5 in a range of 12.0-15.5.

Looking at these now, I'm wondering why it didn't occur to me that they are sort of on the low end. I think I didn't bother looking and the doctor said nothing so that was that! In any case I've been focussed elsewhere until fairly recently (actually it was the good old B-12 Oils guy, Greg, who brought it up). Thank you for the link, I've copied it into my information to read file!

Ferritin can be falsely raised due to the body holding it in storage because it senses invader (virus, bacteria) or other inflammation (e.g. from low b12, low thyroid etc). That storage level going high shows as high ferritin, but it can look like iron is high when in fact iron (as shown on the other tests I mentioned) is actually low.

Yes, I learned about the body (or unhealthy endoplasmic reticulum, maybe) storing ferritin. Yet mine isn't high as of a year ago (though Greg says it's probably lower now), though the woman didn't feel terrible, she felt greater with a higher ferritin (I think she said) level of 220. Hmmm.

As to potassium intake, I assume you believe your requirements for potassium are what they are because of your reaction when taking it. Right?! That all these symptoms go away (as mine do for at least an hour or a few each time I increase my Folate levels) within short order of taking the K+. Yet, I admit your experience is leading me to question my own analysis. I can go through the night without palpitations on the doses I take: 3-5 of about 300 K gluconate powder, each in a big glass of water: 2 morning, 2 afternoon, 1 evening.

My big question for you, Athene, is how do you take all that K+?! We are supposed to take it at least an hour after Folate, right? And not with magnesium (which I take with my lunch and dinner and still want to raise to help deal with COMT++ and my strong reaction to Folate--which is at least some of what this thread is about!) which is an antagonist? I've read that Fred takes 600 mg of K with at least two of his meals, but I never noted whether he was taking magnesium as well. I know some people get a prescription for slow-release or buffered and I will speak to my alternadoc when I see him again in a month or so. But in the meantime....hmmm.

And what levels of Folate and B-12 are these levels of K+ serving?

As to your discovery of how AdoB12 drives Folate needs, fantastic! I started a thread [http://forums.phoenixrising.me/index.php?threads/adenosyl-b12-driver-of-folate-needs.41685/] a while ago because I noticed a connection and am still trying very gingerly to add the Ado at doses that won't stir up the mix too much--right now 750mcg every other (sometimes every) day (1/4 or the Seeking Health 3,000mcg AdoB12). I'm glad to hear that you've noticed this, too.

 

[Athene*]

Hi @Kathevans I'm glad I was of some help. I learn so much here and over the years on other forums and I'm finally getting somewhere at last. Yes, I really notice the Adocbl is eating folate! I'm glad it's not just me...

I really think those other iron tests are more revealing of your true iron status and raising ferritin hugely isn't going to help anyone - in fact it stresses the liver having to store away all that extra iron (unnecessary if your other iron-study-markers are good). And if the body is storing, it will stop the access to iron and your markers will show anaemia. But if you try to correct the anaemia by shoving more iron in, the body will just continue to store it away as ferritin. I have found my body stores huge amounts of ferritin when I have inflammation caused by low b12 and low thyroid function and no matter how much iron I take, the anaemia won't correct itself and the other iron markers and HCT and RBC will remain low. Thyroid status is crucial to keep iron levels up too - thyroxine and iron (and cortisol) all feed into each other and one deficiency brings down the other. And I've just learned something today that is huge for me in relation to thyroxine - I will make another thread on that soon, in case it might be of relevance to others, but thanks to you mentioning riboflavin (b2) - it led me off on a very fruitful search and it might be a bit of a breakthrough for me.

Now that I'm finally on the right form of b12 (methyl) and methylfolate and enough of it, my ferritin has gone right down from over 200 (tests came back today), and my other iron markers show iron anaemia too. I'm taking this as a good sign in relation to the ferritin - that I'm finally creating lots of new red blood cells and the b12 is finally using ferritin from storage, instead of storage hanging on to it because of inflammation. I can only explain this in a way that I've observed it working for me, through watching the bloods over the years and noting down every that's happening at the same time.

You asked how do I take all that potassium? I take 600mg with each meal and then every so often throughout the day I'll take 3 or 4 of the gluconate 99mg tabs with a big glass of water. I can't use the gluconate powder because NOW foods say it's not certified gluten-free (possible contamination in factory). I'm coeliac (diagnosed by gut biopsy, 2010).

I always avoid taking potassium with folate - I break up my b12 and folate doses into 3 times per day. I use my phone alarm. First I take potassium (about 3 or 4 of the 99mg gluconate tabs, unless I've just eaten a decent meal with 5 or 6 tabs). An hour later I take the folate and then about 20 mins after that I inject b12 so that Folate and mb12 will roughly meet up at the same time in the bloodstream). Yes I'm on higher doses b12 and folate than you - I took the plunge after a year on 1mg melthylcobalamin and 800mcg methylofolate (doing nothing for me) and I raised within four weeks to: 20mg mfolate and 40mg mb12 and felt like a new woman until the potassium needs went up and then I had to address that, and now the iron needs. I use a mixture of mb12 injections and sublingual. So I take 2 doses of 15mg sublingual (3 tabs) and once injection of 3mg (about the same as 12,500mcg/12.5mg of sublingual - a bit less than 3 tabs), so roughly the same amount of mb12 each time, and I break the folate into 3 doses (20mg total across the day). I take a slightly higher dose of folate with mb12 injection.

I hope that after a year or so I can reduce all of this significantly like so many here have done and in the meantime I'm watching out for other deficiencies. I'm lucky in that I have very clear signs of each deficiency, for e.g. with folate deficiency it's constant diarrhoea, and epithelial - skin effects - little paper cuts that open and then close within hours of mfolate increase, slight peeling skin on palms (like after light sunburn) and along fingers, peeling inside mouth. Potassium signs I mentioned already and are very clear. Not sure about mb12 deficiency signs so much - they would take longer to show, and anyhow I'm always careful to avoid methyl trap by keeping plenty of mb12 in there. I do remember some acne, including on the scalp, when I was on hydroxocobalamin. It's gone now.

The adenosylcobalamin is hard to take (so I probably need it!), and I haven't got too far with LCF (just 50mcg daily - I break up a capsule). Both increase folate demand hugely. I do get a great initial surge of energy from the LCF though - wish I could take more.

I'm still on adrenal support (20mg hydrocortisone), so this has helped my adrenals cope with the extra demands placed on them by the folate, but if I try to increase folate even by 2 or 3 800mcg tabs, my adrenals complain - ache in left flank and lower back, above kidney, and episodes of intense heat (adrenalin rushes). I have secondary adrenal insufficiency ('idiopathic' according to endocrinologist, i.e. of no known cause, but I would think it's from HPA axis damage from low b12 for decades).

My kidney function has always been good (touch wood) so the high potassium is fine with me.

I have had more good days and activities in the last few weeks than I have had in decades (of course I overdid it and had one or two - fairly short-lived - crashes!) I came across a post recently (yours, possibly?) about being outside one evening and noticing the trees silhouetted against the sky and thinking that life was returning to you - anyhow I really identified with that. Part of me knows there could be more trouble ahead and it's not going to be easy to figure all this out, but at least something is moving in the right direction, and I am so glad I found this forum. There are so many knowledgeable people here - I really admire them...

Insomnia is one of my main challenges - an inverted circadian rhythm with terribly low cortisol in am and high all night

 

[Athene*]

P.S @Kathevans I should probably take the potassium an hour after (not before) folate, but I have found that if I do that, it's not in time to catch the hypokalemia which sets in pretty fast from the folate...Also, I take the folate sublingually (Solgar metafolin) like some here advise, though it may really trickle down to tummy more than through gums - I'm not certain about whether the molecule fits through the gum tissue...others here know more about that)

By the way, like you say, your iron markers from last year are a little low, but not horribly low, and your ferritin could go up a little. You could probably do ok if you eat lots of iron rich foods, but I'd keep an eye on levels, especially if your b12 has continued to use up your ferritin since last year..The good thing is you don't show inflammation, at least going by the ferritin. ESR and CRP would be the other inflammation markers. I found the mfolate and mb12 amazing for reducing inflammation..

 

[Kathevans]

Hi, @Athene. That’s a lot of information and I’ll have to re-read it a couple of times to digest it. I am not the scientist in the family and these things just don’t stick with me; I am the writer and yes, it was my post about the trees silhouetted against the evening sky. One of my favorite things, and favorite times of day.

Those early euphoric feelings with MeB12 didn’t stay for long, sadly, and my need for Folate is much greater than I seem able to tolerate. Possibly the COMT++; maybe MAO++, or some other thing that hasn’t occurred to me yet. This is why I mentioned my efforts to raise magnesium and my attempts to keep it away from the potassium. My earliest Folate deficiency symptoms of just over a year ago were a rash over my chest—still there, though less so—and chronic diarrhea, daily for four or five months (which certainly also included a lot of oxalate dumping as I was diagnosed high for that in January ’15). And now, as my body uses up each dose of folate, I very quickly develop IBS, followed a couple of hours later by the return of diarrhea. I’ve gotten as high 2,000mcg of folate and at that dose, felt like a spinning top. Yikes.

My thyroid seems to be ok so far (knock wood), but a saliva adrenal study nearly flat-lined across the 24 hours I sampled it, so, as you say, all these things are interconnected.

Sleep is a huge issue for me as well, and during each of the two trials I ran on B2, I was more tired and my circadian rhythms slowly adjusted so that I couldn’t sleep as late in the morning. There was something not quite right in the way I felt, though, and the sleep seemed to regress as I neared a month of increasing my dose of FMN by ¼ each week. Something was missing. I'm about to explore whether regular riboflavin is somehow metabolized better/more easily for me than the FMN. counter-intuitive, but who knows...

As it is, I sleep between 5 and 7 hours a night, up and down every hour and a half to three hours, always up for a one to three hour stretch at some point before getting those last couple of necessary hours. Nights are exhausting!

As to inflammation, I could find no reference to either ESR or CRP on my test results, but I must have some or I wouldn’t suffer such pain—just about every joint, tendon, muscle and so on as my body registers the need for more folate. (Before I took the Folate, a trip to a new rheumatologist was remarkably unhelpful, though he did tell me my trapezius muscles were way too tight and that was why I had such an awful pain in my neck--and this was before I ever took B-12)

My mother took DES throughout her entire pregnancy with me, something I learned many decades ago when I was 19. At that time the doctor put me on Folic Acid and I’ve been on it ever since (until my switch to Folate last summer), I believe at 400-800 mcg/day. I remember thinking before I got pregnant that that was something I didn’t have to worry about taking for birth defects as I’d been on it so long. In retrospect, given my snps, I wonder, as Fred has, whether taking this form of folate, particularly without any B12, might be one of the underlying causes of my physiological troubles--a paradoxical Folate deficiency. In my twenties I had to stop both playing the guitar and studying ballet because either the joints in my fingers hurt after forming the chords and practicing for hours, or my feet hurt so much I couldn’t rush across the busy Cambridge streets.

However, I must say that as I raise the doses of folate the inflammation does, at least briefly, disappear. So I’m with you and those who have gone on high dosages. I have high hopes that I can figure this out and make my way to that same place. A year or so doesn’t sound all that bad, does it? Not after so long a struggle.

The years just seem to be peeling away and I want to have the energy to fill them constructively and with joy.

Thank you for your thoughtful and comprehensive replies. I’ll study them!

 

[Johnmac]

@Johnmac - I finally found something in a haematology journal that might explain iron deficiencies for some of us here. In my case it was only when I went to high dose methylfolate and methylb12 per @Freddd that my iron (Transferrin Saturation %, RBC, HCT etc) dropped rapidly over a period of several weeks. Previous iron-studies tests were fine (except for slightly low HCT and RBC) - that was when I was on 1mg mb12 and 800mcg mfolate and was most likely not creating enough red cells to require much iron. I realise the methylation protocol induces mineral etc deficiencies but I hadn't seen anything relating to iron specifically, so it's good to see this stated here. (The rest of the article is very conservative about b12 treatment etc. It's not aimed at ME or gene mutations, just functional b12 deficiency and pernicious anaemia).

“Once vitamin B12 has been administered, the increase in red cell production will increase the demand on iron stores and, therefore, it is important to monitor – and correct – any signs of iron deficiency.” Page 5 of the article, 2nd paragraph from bottom on right side.

http://www.haematologica.org/content/haematol/91/11/1506.full.pdf

Thanks Athene. I'll flick that on to my B12 guru, who is interested in both B12 & iron. All the best...

 

[Johnmac]

Thanks for that.
I guess you know already that @Freddd advocates low b2 to avoid insatiable potassium demand? Maybe you've already gone down that road...
Yes, you're dead right about those pesky thyroid ranges. As far as I can see there is no scientific basis for most medical reference ranges - they include sick people in the sample cohorts and then form useless bell curves with cut-off points. I'm now self-treating with t3 and just using doc for tests. Same with most things now - self-treating. I would love some guidance though. Am searching for a decent naturopath. Preferably one who has more than a 'certificate' in nutrition and a cool website...
I have to admit I'm scared of copper without proper tests. I read somewhere a build up can cause dementia (my mother has severe dementia - could be low b12, thyroid etc too though). Looks like you really needed the copper Glad it's working

The book Stop The Thyroid Madness was my guide for thyroid problems. Not well written, but the basic worldview helped me a lot.

Yes, I've seen what Fred said about B2. I have increased B2 from 20mg/day to 50 or 60, plus lowered m-folate by about two-thirds - & I've improved (so far - 10 days). My K demand has dropped rather than increased.

I was on T3 (20mcg/day) for a long time, but the Freddd Protocol allowed me to slowly taper off it. Also hydrocortisone (20 mg/day), and most recently DHEA. My energy is better than it was before - i.e. when I was on all the above. I think it was the FP, & now the new approach, which has many similarities.

My latest reading suggests that dementia is a B12 problem more than anything; indeed there are big similarities in the biomarkers for AD & CFS. Which presumably explains why I am brain-dead when fatigued: can't reason, can't remember anything. However, yes, by all means test for copper before plunging in. All I can tell you about Cu, really, is that a deficiency is very unpleasant.

 

[Kathevans]

Yes, I've seen what Fred said about B2. I have increased B2 from 20mg/day to 50 or 60, plus lowered m-folate by about two-thirds - & I've improved (so far - 10 days). My K demand has dropped rather than increased.

Lowered the folate from what to what? Have you had B2 deficiency symptoms? And are they the same as folate deficiency symptoms?!

I feel like I'm devolving here!

 

[Johnmac]

Well I always say that devolving is better than dissolving.

The folate in recent months on the FP was as high as 4.8mg/day. Since adding B2 about 15 days ago, I've been able to lower it to .8 mg/day. So that's down to about one-fifth.

Was I B2 deficient? I suppose you could say that a major B2 deficiency symptom is inability to fully utilise methyl B12. Certainly when Greg persuaded me to up my B2, the B12 really kicked in - a much stronger effect, quite palpable.

Dr Greg says I probably was B2 deficient - based on the fact that I haven't eaten much dairy in 20 years. Yes, I did have some symptoms (inc. iron deficiency) but can't say for sure they were from low B2. And yes, B2 deficiency symptoms do look rather like low folate symptoms.

So a quick recap: Since re-beginning the Freddd Protocol about 9 months ago, I've been able to lower my hydrocortisone, T3 thyroids meds & DHEA progressively - to zero in each case by the end of Feb. My energy was better tho a long way off optimal - 60% recovered? So I'm certainly a fan of the FP.

However Dr Greg from B12Oils, who has studied B12 for 25 years & must surely rate as one of the world experts in it, opines that CFS is not a B12 problem - it's a B12 and B2 problem. And that I needed to look at it that way if I wanted to get well.

Moreover, if you add enough B2, you won't need all that folate. Indeed low body stores and inadequate dietary/supplementary B2 are the reason that you do need all that folate. (I could dig out his exact, wonkish biochemical explanation if anyone's interested.)

Furthermore, if you crank up methylation via B12 and B2, you won't need carnitine at all - you'll be making plenty of your own.

And, finally, that the vitamin & chemical industries (of which he was a part) studied sublingual delivery of B12 20 years ago, & pretty much abandoned it because of poor penetration (1-5%): they even foresaw the tooth problems. And that transdermal delivery, once the best oil carriers & surfactants had finally been developed (Greg did this himself), proved much better: 80% uptake, & much less trouble. Rub it on once a day & forget.

It all sounded too good to be true, so 6 days ago (March 4) I decided to give these new principles a trial run. March 4 wasn't a bad baseline, as I'd just got home from a week of international travel in which I'd tried to implement the FP in part transdermally via a messy & complicated DIY method, & ended up deficient from too-erratic doses - & badly crashed. I was not only physically crashed, but much-reduced mentally. I kept getting lost in my driveway. That's a slight exaggeration - but the experience sharply underlined my recent reading - about the many similarities and overlapping biomarkers between CFS and dementia.

Anyway: my present regime is one squirt of the mB12/Ado oil a day; 50-60 mg B2/day; some selenium, B1, C, some K just in case, & my normal pyroluria supps. And down suddenly to a 400mcg tab or 2 of m-folate a day, now swallowed, not sublingual. And no carnitine.

So far the new approach appears to be working. My energy has increased a lot off my crash low, & a little on the month before, & I've had some nice euphoria. TD provides a steadier experience. It takes 8 hours to peak because the B12 gets fed onto the transcobalamin receptors so slowly - but the slowness also means there really aren't serious peaks & troughs. Mental functioning is a bit better each day. A friend with fatigue whom I put on the oils a few days before me now has little fatigue.

I have not had greater demand for folate or potassium - intakes have dropped.

But 6 days isn't long. We'll see...

 

[Athene*]

[/QUOTE]

However, I must say that as I raise the doses of folate the inflammation does, at least briefly, disappear.

Thank you, too I love your description of the years peeling away - sadly evocative, and true for me too. Have you ever tried jumping up to a much higher dose of mfolate? I read Freddds suggestions of increasing (even for one experiment) by 3 or 4 times your usual dose of mfolate to see if it helped symptoms and when I did that once I felt amazing. I went from 800mcg to 3K, then symptoms came back within a few hours so I got braver (or more desperate!) and after being too scared for a year, I finally increased again to 6K, and stayed there for a few days (felt fantastic for a few days). Then same old symptoms returned (flu like feeling, achy all over, fatigued, IBS, diarrhoea), and I went to 9K (again felt amazing for even more days). Then symptoms returned and I decided to go for it and just kept increasing every few days (I decided to stop at 20mg, though I know Freddd and others needed 30mg or even 45mg) and eventually at 20mg I had weeks of feeling fantastic - energy, no pain, getting out and about (my husband couldn't believe this after 15 years of bed/couch ridden, the odd day here and there of being able to leave house and then collapsing). So then the potassium need kicked in big-time and I overdid things too and had a couple of crashes (bad, but short-lived). I kept increasing mb12 too, all this time, by the way, to avoid methyl trap...