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B12 Documentary

cph13

Senior Member
Messages
221
Location
USA
Xara, Please DO NOT APOLOGIZE and Thank you ever so much for all the detailed information. I will read your reference pages in detail. We need all the information we can get. Again, Thank you! Be well and Happy Healing hugs C
 

sandgroper

Senior Member
Messages
104
Location
west australia
very interesting, i had a B12 injection at my dr and the next day the homocysteine test....i did wonder about it at the time but I did know enough about the homosysteine test nor did the doctor .....i was wondering if i had the MTHFR gene
so it looks as though that test was useless
 

Xara

Senior Member
Messages
135
Location
The Netherlands
If want to know whether you have the MTHFR gene, I think it's better to just test for that one.
If you wanted to know whether you have a B12 deficiency, well, yes, the B12 injection might have spoiled things - but maybe you are still low. In case it's high thanks to supplementing, than you'll have to look at the symptoms and see whether your symptoms will lessen with B12 injections/supplements. That's the guide line of the B12 deficiency foundation in the Netherlands, though mind you, not all Dutch doctors are aware of it or agree with it - don't know how the situation is in other countries.
BTW I am getting the impression you regard the MTHFR gene as being the cause of B12 deficiency; there are many causes of B12 deficiency (and I am not up to date whether science regards a MTHFR gene defect as one of them).
 

Xara

Senior Member
Messages
135
Location
The Netherlands
O, gosh, I was talking about a B12 serum test, and you about a homocystein test. :( And I do understand the relation between the homocystein test and the MTFHR gene now. It's the step my doctor took as well: high homocystein? Then testing on MTHFR gene.
I'm sorry for mixing it up and giving you a stupid reply. :(

That homocystein test may have been spoiled, yes, meaning the value is not as high as it could have been without the B12 injection. Maybe the values are normal now, meaning it is low.
Btw B12 deficiency and high homocystein levels do not go hand in hand. B12 is not the only thing that influences the level of homocystein: methylfolate, B6 and TMG have their influence too.
 

Xara

Senior Member
Messages
135
Location
The Netherlands
Some articles and sites that may be useful to some, perhaps some may even be suitable to print and give to your GP... (when he rules out you could be having a B12 deficiency)

Pernicious Anaemia
http://home.kpn.nl/hindrikdejong/pa-artikel-eng.pdf

Vitamin B12 Deficiency
http://home.kpn.nl/hindrikdejong/979.pdf

Challenges in the identification of Cobalamin-Deficiency Polyneuropathy
http://home.kpn.nl/hindrikdejong/1296.pdf

Neuropsychiatric disorders caused by cobalamin deficiency in the absence of anemia or macrocytosis.
http://www.ncbi.nlm.nih.gov/pubmed/...nel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Diagnosis
http://www.dach-liga-homocystein.org/EN/Fachinfo/B12/diagnostik.htm

Functional Vitamin B12 Deficiency Represented by Elevated Urine Methylmalomic Acid Levels in Patients with Migraine
http://home.kpn.nl/hindrikdejong/Migraine-MMA.pdf

Recurrent Seizures: An unusual manifestation of vitamin B12 deficiency
http://home.kpn.nl/hindrikdejong/epilepsie.pdf

Catatonia and other psychiatric symptoms with vitamin B12 deficiency
http://home.kpn.nl/hindrikdejong/ActaPsychiatrica-2003.pdf

Homocysteine, folate and vitamin B12 deficiency in neuropsychiatric diseases: review and treatment recommendations
http://www.dach-liga-homocystein.org/Fachlit/konsensus/neurodegen_EN

Plasma vitamin B12 status and cerebral white-matter lesions
http://home.kpn.nl/hindrikdejong/EMC-laesies-B12.htm

In vitamin B12 deficiency, higher serum folate is associated with increased total homocysteine and methylmalonic acid concentrations
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18056804

Total homocysteine and its predictors in Dutch children
http://home.kpn.nl/hindrikdejong/Am-Journ-Clin-Nutr-2006.pdf

How I treat cobalamin (vitamin B12) deficiency
http://bloodjournal.hematologylibrary.org/content/112/6/2214.full.pdf

Disorders of cobalamin (Vitamin B12) metabolism: Emerging concepts in pathophysiology, diagnosis and treatment
http://home.kpn.nl/hindrikdejong/Solomon-B12-2006.pdf

Cobalamin-responsive disorders in the ambulatory care setting: unreliability of cobalamin, methylmalonic acid, and homocysteine testing
http://home.kpn.nl/hindrikdejong/Solomon-blood-2005.pdf

Laboratory Diagnosis of Vitamin B12 and Folate Deficiency
http://home.kpn.nl/hindrikdejong/Snow-B12.pdf

Vitamin B12 deficiency Support Group (Charity)
http://www.b12d.org/

Vitamin B12 deficiency
http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/20862.html

Many articles on Vitamin B12
http://vitaminb12.researchtoday.net/
 

_June

aren't I pretty? *baaah!*
Messages
34
I liked the video thank you for posting it. And Xara, thanks for all those links.

Does anyone have any information about dementia recovery with B12? Any success stories?

I'm 25 years old and I've had symptoms of dementia for 7 years, and all the other B12 symptoms through the years (some mild, some bad). I already gave up thinking I'll ever recover, but it's really difficult to think I'll be like this forever.

I feel much better since I changed my diet, but I still have dementia symptoms, the thing I most desperately wanted to fix. If I could choose, I'd rather go back to diapers, if only I could be smart again!

I don't have insurance or a doctor, so I can't get B12 tested. I asked my husband if we could buy the 5mg sublinguals, but I don't think we'll be able to afford it. Money is very tight. He's been taking care of me all these years.

He thinks it's just another "stupid thing June came up with", but then again he thought my diet was a stupid thing too, and I became so much better I can atleast care for myself now. I'm much stronger and healthier and can shower on my own now, for example, and don't have to worry about diarrhea either. I hope I can be smart again if I take B12.
 

Abha

Abha
Messages
267
Location
UK
Hi Arx,
Thanks for your posting(video).I still have to look at it.
Anna8...Re your question and testing on the NHS...I'm a senior citizen now and I reckon(now)that I have been B12 deficient(besides my other problems some of which may have been brought about by that deficiency)al my life.My mother was B12 deficent but not diagnosed until her latter years(died in late 80s).Her GPs didn't detect it until informed by a student doctor who recognised the symptoms.My grandmother(maternal)I believe had it too.She was confined to a wheelchair(youngish?)...seemingly diagnosed as arthritis(but in those days I guess there was some excuse).At one stage(in hospital)it was found I had low B12(but i really wasn't informed how important it was).Then I was given a course of injections (should have been followed up but never was and not recorded in my notes).That was in late 70's/early 80s.I have had many neurological symptoms some could be attributed to B12 others to other things(oranophosphates etc)In 2005 I saw an NHS consultant(re my ill health/supposed ME expert!...but not in my eyes!)One of the tests showed I had b12 levels of 93 pmol/L
 

Abha

Abha
Messages
267
Location
UK
Hi Arx,
I somehow posted above before i had finished..sorry...continued here...Even then in the NHS my B12 deficiency wasn't treated properly.I think that consultant prescribed one(2?)injections of B12.My terrible diarrhoea/crippling fatigue continued and a few years later(2008)a gastrologist diagnosed pernicious anaemia/autoimmune gastritis(etc)It was only after that that i was prescribed b12 injections(every 3 mths)That is deemed insufficent by Pernicious Anaemia Society....higher risk of stomach cancer too(but no equipment to determine that).I also asked to see another a Haemotologist re this problem but that was refused.The NHS has a very poor record in this field(many web sites mentioning that)...see Pernicious Anaemia Society too.

There used to an Indian doctor(Dr joseph Chandy?) in NE of England who specialised in this(had a web site?).His work was interesting

"Could it be B12"(Dr Jeffrey J.Stuart/Sally Pacholok/Amazon)is a good read on this topic.I feel that B!2 deficiency has had a very important part to play in my own illness....earlier recognition would have helped me greatly.Anaesthetists need to be aware if you are B12 deficient(in my case they weren't)....nearly paralysed me and the crippling effects have remained with me.Also dentists(who use gas)need to be aware re B12 deficiency.I was given that when I was a child so that probably weakened my immune system further.There is literature on the web re this too
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks for posting this. I have been struggling to get correct treatment for b12 deficiency since July. I am fairly certain mine was masked for some time because of high folate.

In the beginning, I went to the ER on two separate occasions for dizziness and hearing loss and they told me to take Dramamine and drink more Gatoraid and that everyone who comes in here complains about fatigue. My symptoms progressed and finally on the 3rd visit, they ordered blood work and my red cell size was off the charts as well as other indicators. I got a letter in the mail a week later from my HMO telling me to immediately start taking b12 and folic acid. By this time neurological damage had been done.

Unfortunately, nerve damage has occurred and by the time an actual b12 serum test was done, my b12 levels " were in range" Still have the macrocytosis, and finally after a three month wait, had an appointment with a neurologist. Waiting on more follow up.

I decided to research and had 23andme testing. No surprise that I'm ++ on several important b12 methylation SNP's. It's still new to me and from this point on, I will proactively look out for me and tell the so called allopathic experts what they need to know about b12. The neurologist had no clue about the snp's and wouldn't even look at them. After I get the MRI results, I'm going to write the HMO an informative letter about their failure to provide timely services and lack of qualified MD's. Don't get mad, get even!

Hi Bead Dog,

I'm going to write the HMO an informative letter about their failure to provide timely services and lack of qualified MD's

Now this I perhaps know about. Are you a member of a group that has truetees as in a Union group health plan or some other groups? Sometimes it is better to complain to the plan truustees. Also, there is probably a dissatisfaction line which will get these issues very serious consideration. I was in that business for more than 20 years, working for the trustees of a virtual HMO that contracts services, as opposed to facility models, the ones who have their own hosipitals and such. These kinds of things are taken very seriously if you write it up appropriately, or sometimes, get the right form so you supply all required info and things like that.

Now where you are going to run afoul are "standards of care" set by the Joint Commission on Hospital Accreditation. They define all the "by the book" interpretations of CyCbl once a monrth, in the USA. If they did it according to the ambulatory care standards you won't likely get any traction.

My ex wife called be last week and got started on MeCbl, AdoCbl, l-methylfolate and L-carnitne fumarate. Her MCV is 120 and everything is whacked. She is very anemic and feels terrible. How it happened so fast is of concern. However, barring some major underlying problem most everything will correct if not delayed. The faster you get to these things with about 30mg a day injected of MeCbl in 3 or 4 doses for CNS repair the sooner. The longer you delay the greater the chance of permanent damage. Probably 90% of the damage that is "permanent under perodic HyCbl or CyCbl can be significantly reveresed with sufficient doses of MeCbl, AdoCbl and needed cofactors. I reveresed most of the Subacute combined degeneration so I am quite functional and continue to hold it mostly at bay. You could be get a lot better but it will take some determnination to get the treatments needed.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I liked the video thank you for posting it. And Xara, thanks for all those links.

Does anyone have any information about dementia recovery with B12? Any success stories?

I'm 25 years old and I've had symptoms of dementia for 7 years, and all the other B12 symptoms through the years (some mild, some bad). I already gave up thinking I'll ever recover, but it's really difficult to think I'll be like this forever.

I feel much better since I changed my diet, but I still have dementia symptoms, the thing I most desperately wanted to fix. If I could choose, I'd rather go back to diapers, if only I could be smart again!

I don't have insurance or a doctor, so I can't get B12 tested. I asked my husband if we could buy the 5mg sublinguals, but I don't think we'll be able to afford it. Money is very tight. He's been taking care of me all these years.

He thinks it's just another "stupid thing June came up with", but then again he thought my diet was a stupid thing too, and I became so much better I can atleast care for myself now. I'm much stronger and healthier and can shower on my own now, for example, and don't have to worry about diarrhea either. I hope I can be smart again if I take B12.

HI June,

Some of these things will be much cheaper in the long run. Get the Enzymatic Therapy MeCbl 1mg. You can't afford to mess around. You need to get the best. Your best shot at it will be the first time. Can you go to those lists of symptoms by nutrirent and check all 6 of them I think, for what your symptoms are and the nutrients groups they are in. That can tell you a lot. B12 and folate deficiemcies cause all sorts of cognitive, neuropsyc, mood and personality symptoms and so on. So write them down, post them by the nutrients, all the ones of yours that you find on those lists. Then let's look at that. change can be long and slow or faster that you can believe. There is still hope but waiting doesn't pay. I backed things up from about year 15 of CNS effects to about year 5, then I lost 5 years worth to the glutathione. Post them and lets look at them.
 

_June

aren't I pretty? *baaah!*
Messages
34
Freddd
The thing is that when I changed my diet, a lot of my symptoms improved or went away. The only things that are left are (that I can remember right now):
  • Cognitive impairment (can't do kindergarten math, make change, I can't retain the information in my mind to connect it to the next step, for example, when adding 14+21 in my head ... 4+1 =5, 1+2=3, I can't remember the 5 so I have to start over (now I can, because I wrote it down and could look at it). Or if I want 45 cents, and I have a quarter, a nickel, and pennies, I get confused and lose track. I think this is called "working memory".)
  • I can't learn anything new, even if I'd previously known it before. Been trying for 7 years. Taught myself calculus II when I was 14, but now I can't even get past chapter 1 of basic algebra. (math was one of my hobbies/pastime.)
  • Fast heartbeat (atleast 120 beats per minute even when I'm sleeping. Instead of the normal "DUM-dum......... DUM-dum.......... ", I have "DUM-DUM-DUM-DUM")
  • High blood pressure (now it's generally a high normal or a low high, much better, but still bad sometimes)
These 3 have all improved dramatically with a change in diet. I used to be much worse. My heartbeat was really really irregular before. Atleast now it's regular. And before it was 160+ bpm even when resting in bed.

I still have some fatigue. Now I can keep the house clean and go for a walk everyday, and do two-three hours of volunteer work here and there.


Before I changed my diet, I had a lot of problems:
  • A hug or gentle caress registered as pain to me. I would rather you dig your sharp nails into my skin and dragged them really hard, that wouldn't hurt nowhere near as much as a gentle caress hurt me. My husband couldn't touch me. Poor guy.
  • Irrational anger and crying outbursts.
  • Breathless (still have some of it). It sounds like I'm sighing deeply at all times, even if I'm just curled up on the couch reading a book. I have to remind myself to breathe. My heartbeat and breath are out of sync with each other (because of fast heartbeat) which makes my heart stop (I would almost say "go back") for a second when I inhale.
  • Anxiety and panic attacks... phobias. I refused to leave the house because "what if the house burned down while I'm away?". Or if plans changed (if we were going grocery shopping Monday but we decided to go Sunday instead), I would have a huge nervous meltdown that would take days to recover from.
  • If I saw a friend one day, I wouldn't have energy to be around people again until a few days later. I would literally not be able to think or speak properly.
  • Paranoia. Unbelievable paranoia. An entirely different person.
  • Odd/extreeme reactions to sensory feelings: when you take a shower, then dry your hair, you can still feel a little moisture on the back of your neck, right? It's really not that noticeable. But to me it felt horrible! It caused an anger and crying outburst as if I were being tortured. Another thing that also caused outbursts is how the bed sheets felt like. They felt very irritating to my skin, the same way as if someone caressed me. I needed to rub my body with coconut oil and wrap my body in silk to minimize the sensation. Sometimes it worked enough that I could sleep, sometimes I would get too angry and stay up all night, because even if I were tired atleast the sheets wouldn't be "hurting me"!
  • Light sensitivity, I only went outside when I had someone to hold me and guide me so I could keep my eyes closed.
  • My pupils were almost as wide as my iris, and didn't contract when exposed to light.
  • Couldn't move my fingers/hands/wrists when I woke up in the morning, until about noontime or so. They were very stiff and painful.
  • No strength (I was very muscular and strong but suddenly I had no muscle at all anymore! I tried to lift 1lb weights and it hurt after 3 repetitions!). Now I've regained a lot of muscle just by eating lots of beef (or pork)
  • Shooting bone pain (I suddenly lost a lot of bone mass). Collarbone, lower leg, arms, foot. It felt like my bones snapped in half sometimes. Got to the point I barely moved my arms anymore, or walked, because it hurt too much.
  • Joint pain. It felt so bad I wished I could cut off my arms and legs, because then I wouldn't have joints anymore, so no more joint pain, right? :) It felt like I had balloons inside my writs, elbows, knuckles, knees... putting very strong pressure on it or wrapping something really tight made it feel better.
  • If I knelt on the floor, I couldn't get back up without help. I would crawl somewhere with support to help me get back up.
  • Lost feeling on my arms if I raised them above my head for 5 seconds (if I were tying up my hair for example).
  • Constant hunger. It seemed I needed a meal every 30 minutes. If I didn't get it, I would yell and verbally abuse the person next to me, as if it were their fault they didn't bring me food (it's funny because I'm otherwise so shy and innocent, I wouldn't dare blame other people for anything :) !). Then my vision would black out and I would get too weak, someone had to drag me to the car and then drive me home.
  • Couldn't remember my age and birth date, phone number, and so on. If I read my phone number out loud, two seconds after I forgot it and had to look it up again.
  • Depression and really suicidal. Because I wasn't able to do anything, and lost all my smartness, I thought I wasn't worth being alive anymore. Everything I enjoy as a hobby since I was a little girl needs brainpower (math, physics, computer science), and now I was worse than a kindergartner. Sometimes I still get really sad about this, but I'm not depressed or suicidal anymore no matter how grim things are. Diet really helped!
  • Brain fog (couldn't finish short phrases, words were backwards, couldn't count to 10 without starting over). If you asked me "Hi, how are you", it would take 10 seconds to figure out that you're supposed to answer to that.
  • Unable to think logically (almost putting my hand in a running blender, burning the laminate flooring by putting a hot pot on it, grabbing a hot casserole dish in the oven with my bare hands)
  • Clumsiness (dropped and broke everything no matter how light, tripped everywhere, even at home, bumped into walls/door-frames, lost balance). Incapable of opening boxed food (spaghetti, cereal, etc), I tried very carefully, but I always tore the box and the plastic in half and the contents would spill everywhere. I needed to ask my husband to open everything for me, because it happened every-time and he was tired of how much food went to waste because of this. He thought I was careless / didn't try hard enough)
  • Terrible handwriting. I used to have beautiful cursive handwriting but it became so illegible... even I couldn't read it after I wrote it. I couldn't control my hands when writing so it was all jagged and irregular. My handwriting is pretty and legible again, now.
  • I avoided wearing shoes or socks, I was a lot less clumsy if I could be barefoot. I still need to go barefoot or wear very thin socks with "bumpy" texture inside (like Crocs) which provide sensation to the sole of my foot.
  • Only took showers when my husband was in the shower or in the house, because I fainted. The clumsiness was an issue too.
  • I was so clumsy I always held on to someone when I walked outside. I tripped a lot and bumped into stuff. Around the house, I walked by touching the wall.
  • Tremors (constantly)
  • Extreme sensitivity to noise (led to panic attacks because noise was scary)
  • Migraines & headaches everyday
  • Nose bleeds every day (generally in the mornings)
  • Slept a lot (13+ hours) and very tired everyday. I only had energy to cook or do the dishes. Not both. When I got worse, I only had energy to order take-out meals. When the problem started, I actually feel asleep everywhere with no warning (awake and alert one second then suddenly asleep the next second) but thankfully that didn't last long!
  • Painful dry skin (everywhere), to the point it would crack and bleed.
  • Black circles under my eyes
  • My mom used to say I had dry/cracked skin around my mouth? I thought it was because she likes to come up with random stupid things to make me feel bad, like "your hair is ugly" :p But when my skin got better I realized the skin to the sides of my mouth was really flaky before, very pale compared to the rest of the face.
  • Weird coloring of my skin, specially face and hands. It was spotted different colors, purple, red, yellow.
  • Constant diarrhea so bad I spent holidays like Christmas and Thanksgiving at home, all alone, because I didn't want to deal with the embarrassment of having an accident around family.
I tried to eat "healthy" low-fat diet with lots of vegetables, trying in vain to get better, but I only got worse.
I got better when my mom came to stay with me (after I ended up in ER and couldn't look after myself properly; my husband was in another state doing some training) and she made me eat foods rich in cholesterol like beef shoulder, pork butt, eggs, raw fatty cheeses, sardines and other fatty fish. These foods also happen to have a lot of B12. I never made the connection.

When my mom came here I didn't have any more money, so I couldn't buy bread, rice, or other grain products. I only ate what she made for me. When I tried to reintroduce them to my diet I reverted to how I was before.

But just avoiding grains isn't enough. If I start eating low-fat again, I revert and get very tired. I need to consume a lot of cholesterol everyday, atleast a thousand milligrams.

Now I'm trying to eat liver and heart whenever I can get my hands on them (from farmers). Liver has a lot of folate too. Trying to eat more oysters, clams, cod liver too.

I also need to eat more calories, I'm rarely hungry so I only eat about 1200 calories. I should eat atleast 1900.

I hope that will help me even more. But I don't want to wait for it to take effect, I'm too impatient at this point, I already lost so many years of my life.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
HI June,

There is a lot here I recognize from my own experience wirth Subacute Combined Degeneration which is heavy duty b12 and folate deficiency neurological damage, plus the body with a heavy empjhasis on folate deficiency but at the same time there is a pattern I can't put my finger on. There appears to be something else also going on too. Or more of the severe neuropsyc part I hadn't had happen. The paranoia, clumsiness, tripping (I tripped on my toes for instance) are all hard caore b12 deficiency. So is skin color change. But dilated pupils isn't usual in b12 deficiency I think that the Enzymatic Therapy MeCbl and Anabol AdoCbl and l-methylfolate are all important, and are all in liver. As is carnitine. Becasue of the anxiety I would be cautious of L-carntine fumarate but it was also essential in the workings of liver extract concentrate. Also again your pattern doesn't really fit. I thing that the two active b12s could be very active and might hit hard. I had all sorts of neurological things oimprive quickly. Neurological pain and changed neuro sensations all over my body changed to near normal in 10 months.

I lost a lot of muscle mass, gained 85 pounds of water. They reversed at the same time. Omega3 oils can, with the vutamins, help improve skin a lot. Are you taking vitamin C?
 

Xara

Senior Member
Messages
135
Location
The Netherlands
_June
Freddd
Hi June,
The only odd thing out I see in your list when talking about B12 deficiency are the nose bleeds and the constant hunger.
I think most of those symptoms can be related to B12 deficiency. Some I had, or have, myself. I had a serum B12-value of 119 pmol/l, so B12 deficient.

Some symptoms of mine I like to mention (so not giving a complete overview here):

Light: I could not walk outside without being guided, I had to look down, with my eyes almost closed, or closed entirely. The light hurt terribly. I never checked my pupils, didn't think of it. I thought at the time it was because I rarely left/leave the house (housebound, can't keep my house clean, can't cook).

Unexpected sounds: I did not experience panic attacks like you, but I reacted physically in a very strong way when confronted with a sudden sound, be it hard or not, be it familiar or not: heart, nerves, breathing, all reacted strongly, in the same way a normal person reacts physically when frightened.

Noise: strong urge to get away from the noise, the noise is very stressing.

Clumsiness: I broke my noise thanks to that.

Dry skin. Sometimes my skin was that dry (and painful) I looked like a 90 year old: all wrinkled, like an orange that's shrunk and kept for months.

Constant hunger. That one's not related to B12 deficiency as far as I know. My BMI was/is < 25. My constant hunger stopped when I started to add cale, spinach and other green vegetables (raw) in my daily home made smoothies. So must have been some sort of deficiency which is now absent.

I am supplementing methylB12, adenoB12 and methylfolate, and many other things. I started in December 2012. I seem to be improving a bit, neurologically speaking.
I consider to be the biggest problems at the moment: the fatigue, the muscle weakness, and when being active: fast heartbeat and shortness of breath.

I hope you'll continue to improve. Good luck.
 

_June

aren't I pretty? *baaah!*
Messages
34
I tripped on my toes
Haha, I started laughing when I read that. I have that but didn't know how to explain it. I trip on my toes too (either they bump on the floor, or they bump into my leg, or they get caught inside the jeans and I "fly" on the floor like a penguin!)

I lost a lot of muscle mass, gained 85 pounds of water. They reversed at the same time.
Wow, I can't believe that! So much water

Omega3 oils can, with the vutamins, help improve skin a lot. Are you taking vitamin C?
Yeah, my skin already improved a lot, I rarely need lotion or to wrap myself in silk anymore.

I eat lots of fatty fish every week, so I'm not supplementing omega3. I generally have a ratio of omega3 to omega6 of 1 to 1 which is perfect. Today I ate 10.3 g of omega3 and 5.3 g of omega6 (even better than 1 to 1 ratio).

I'm consuming 10 times the recommended amount of omega 3.

Fish oils are really rancid unless you buy minimally processed cod liver oil in a dark black glass bottle. Otherwise I imagine the oxidized fish oils do more harm than good. Even a lot of cod liver oils sold nowadays are so processed that they lose all the nutrients and synthetic ones are added.

But I buy cod liver in a can, it comes with a lot of the oil too, and make a salad with the liver. (It tastes like tuna and has the texture of sardines! Wish it were the other way around :) )

I eat plenty of foods high in vitamin C like raw lacto-fermented sauerkraut or peppers, plus one lime in my food or drink, but I only started doing this last year and not everyday. I'll try and eat a lot of it everyday.
About 900mg vitamin C most days, pretty good.

I already have some supplements like magnesium, Coq10, and vitamin D3, I don't know if my husband will be happy if I ask for more supplements. I might be able to ditch the D3 since I eat plenty of fatty fish now, and the COQ10 since I eat beef heart. It will give more money for the B12.

I really need to take my chicken and beef broth everyday, it really improved digestion. Probably helps absorb nutrients better if it improves digestion. I have a lot of chicken bones so I'll make a big batch of broth tomorrow!
 

_June

aren't I pretty? *baaah!*
Messages
34
I figured that light sensitivity comes from the dilated pupils; pupils open or close on demand based on the amount of light. If you're outside on a sunny day at noontime, your pupils are supposed to constrict into a tiny dot. If you're indoors on a rainy day with the curtains shut, your pupils are supposed to expand.

I checked it by looking at the bathroom mirror. Before when I had sensitivity to light, my pupils were large in a dark bathroom, and when I pointed a flashlight at the mirror, the pupils wouldn't close at all. They wouldn't move, they were large as before. But now that I don't have (nowhere near as much) light sensitivity, when I do this same experiment, my pupils go really small when exposed to the flashlight, and when I remove the flashlight the pupils get large again (so they are behaving as normal now).

That's why I think light sensitivity and large pupils are related.


Xara you do know that kale, spinach, and greens don't have folate, right? I'm just wondering, in case you think it does (it's a common misconception... it has folic acid, which is not the same as folate. Just as beta carotene in carrots (so-called vitamin A) is not the same thing as vitamin A in meat. )


On topic, I just wish I could eat more. Today I didn't eat anything and now I'm eating dinner. I wasn't even hungry for dinner.
It's carrots and chuck beef cooked in butter. It's about one cup of food. I eat a couple bites and I'm full and can't bear to eat anymore. I feel stuffed. But I make myself finish it, obviously.

If I could eat more, I would be able to consume more B12. I could eat cod liver and egg salad for breakfast, chicken heart kebabs for lunch, and beef roast for dinner, and I'd get a lot of B12, but if I eat just breakfast I'm not hungry for the rest of the day :confused:
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I figured that light sensitivity comes from the dilated pupils; pupils open or close on demand based on the amount of light. If you're outside on a sunny day at noontime, your pupils are supposed to constrict into a tiny dot. If you're indoors on a rainy day with the curtains shut, your pupils are supposed to expand.

I checked it by looking at the bathroom mirror. Before when I had sensitivity to light, my pupils were large in a dark bathroom, and when I pointed a flashlight at the mirror, the pupils wouldn't close at all. They wouldn't move, they were large as before. But now that I don't have (nowhere near as much) light sensitivity, when I do this same experiment, my pupils go really small when exposed to the flashlight, and when I remove the flashlight the pupils get large again (so they are behaving as normal now).

That's why I think light sensitivity and large pupils are related.


Xara you do know that kale, spinach, and greens don't have folate, right? I'm just wondering, in case you think it does (it's a common misconception... it has folic acid, which is not the same as folate. Just as beta carotene in carrots (so-called vitamin A) is not the same thing as vitamin A in meat. )


On topic, I just wish I could eat more. Today I didn't eat anything and now I'm eating dinner. I wasn't even hungry for dinner.
It's carrots and chuck beef cooked in butter. It's about one cup of food. I eat a couple bites and I'm full and can't bear to eat anymore. I feel stuffed. But I make myself finish it, obviously.

If I could eat more, I would be able to consume more B12. I could eat cod liver and egg salad for breakfast, chicken heart kebabs for lunch, and beef roast for dinner, and I'd get a lot of B12, but if I eat just breakfast I'm not hungry for the rest of the day :confused:

Hi June,

Eating twice a day will get you out of semi starvation mode and your body will burn more energy. If you can't exercise you need to get going on first 3 of the deadlock quartet and then titrate the LCF and that will get you metabolism going and a lot of people get hungry.

Yes, the toe tripping comes from loss of spinal nerves. You appear to have subacute combined degneneration as I do. Only superphsyiological doses can have a chance at healing the CNS changes. I've made almost every mostake in the book in the last 10 years and am paying for it.
 

Xara

Senior Member
Messages
135
Location
The Netherlands
News from the PAS, The Pernicious Anaemia Society
http://www.pernicious-anaemia-society.org/

The PAS has published a new documentary, Living With The Fog, in three parts.

Personally I found part three most interesting, different people react differently to different treatments. Some people seem to respond to frequent injections only.