Hi Everyone!!!!!
Hope everyone is doing well.

I need some support, please~

I'm still have neuro attacks, which include (but are not limited to...ugh)
fatigue, vision problems, spasticity, muscle twitches, saying wrong words for things, cognitive issues, balance issue, loss of sense of taste, buzzing in limbs, balamcexagerated startle reflex...blah blah blah.

I've been treated since 2004 for b12 deficiency.
still get attacks and new symptoms, so fun.
and all reflexes are affected, positive rhomberges, hoffmans, reflexes absent in feet now,
nystagmus in both eyes now,

mris clear, sseps good,

so anyway,
I've recently decided to start a raw diet, (well 75 % raw)
but ALL VEGETARIAN

I can't tolerate milk products

do eat soy

last night had a bit of fresh scrod, shhhhh.....
but
primarily veggies....


and
am so desperate to be rid of neuro attacks I am going gluten free too!!!

I'm afraid of exacerbating the b12 thing.

Just had the gluten testing (iga, iGg, and b12 blood work)
don't know where the values are, but I think if anything were amiss they'd have called by now.......don't worry I'll get copies!

I get 1000mcg of cynocobalmin every two weeks
and do methlycobalin under the tongue (too much keeps me up at night)

had a weird thing last year where my b6 was 96!!!!and b1
went to 7, needed to do those painful shots every day for two+ weeks......

and

kidney issues :medullary sponge kidney disease with constant stones, after 24 hour collection uric acid was too too high, too low volume and too high magnisieum and low concentration.

in order to correct that, i was to take potassium citrate everyday for the rest of my life, but opted to try to increase urine volume and lower concentration in an effort to equalize the uric acid.....repeat test in sept

Here are my concerns/questions:

can too high uric acid content cause neuro attacks with regard to absorption of b vitamins? would going on the potassium citrate be the easiest thing to do? or dangerous?

is it premature to go off gluten?
How will that affect b12, if at all?

should I add back fish at least once a week to help keep up with b12?

what would the potassium citrate do to the b12???????

even though the neuro stuff is progressing (more symptoms) I don't want to make it worse........that's my biggest fear.

I feel good otherwise, no sugar cravings, very little shakey/lightheaded/need to eat now feelings, more energetic and walking a mile daily -if neuro stuff isn't taking over......

I'm so sick of being sick, and the prospect of taking potassium citrate and needing blood work to check for resulting problems from that sounds perfectly horrid. I want to see if eating properly would correct all my problems.

Thank you so much for listening,
I would love to hear from anyone that has experienced a turn around from their symptoms by diligently eating properly.

hope ya'll are having a super summer,
take care,
lah

I think it might be best is to find someone who is a registered dietician with an interest in an all-raw diet. You can call a local university, to see if they have a referall line. Here is a link that might be of some help:
http://www.eatright.org/cps/rde/xchg...xsl/index.html

In addition, there is the McDougall Diet...that is basically an all raw diet.
You can check out this Dr.'s website and books for what I suspect will be very sound nutritional advice:
http://www.drmcdougall.com/

From what I remember, Dr. McDougall advocates eating a wide variety of fruits and vegetables, plus also taking a B12 supplement. I think he suggests other supplements sometimes.

How much methyl. B12 do you take? I have heard of many folks taking the 5000 tablet daily with no side effects and in fact...feeling better from this alone. You can try 3000 at first and take it early in the morning. Also, be careful about the injections. There are some folks who have a slight allergic reaction to them. Therefore, it could be better to stop them or cut back on them. The tablet alone is likely sufficient. It's something to research and ask the doctor about...(also check on this site for b12 threads...there is much info.)

Also, are you seeing a neurologist? If you are seeing one, would you consider getting a second opinion? Is it possible that any medications you are taking are causing some of your symptoms? Would your current doctor be willing to work with a dietician?


The library often has really good sources.
Three of my favorite books include:
Food and Mood by Elizabeth Summers
Food, Your Miracle Medicine by Jean Carper
and SuperFoods by Steven Pratt

In the last book, the following foods were listed and super healthy/super foods...most of which are vegetarian and can be eaten raw:
beans
blueberries
broccoli
oats
oranges
pumpkin
soy
spinach
tea
tomatoes
walnuts

others
wild salmon
turkey

I have enjoyed improvement in my symptoms by avoiding junk food and eating many of the foods mentioned above. In addition, I take vitamins; including the B vitamins. I see my Dr. regularly and get exercise when I am able. My doctor has an interest in nutrition, but this is unusual. I suspect, most folks will have to either seek the advice of a dietician or nutritionist. Another avenue to try would be a integrative physician ... who would likely look at your diet and vitamins or would be most willing to work closely with a dietician on your case.

Wishing you well.

thanks Vowel Lady,
I am very interested in the dr mcdougal site.

yes my neuro is the "go to guy" in these parts, and thinks there is a connection btwn the kidney and deficiency deal.....you have a very good point about an intergrated physician too, i would very much like that.

i've been reading my head off (vegan books cook books, raw diet books), and eating a huge variety of fruits and veggies, i had fresh figs this week for the first time!

thank you so much for your input, it's so hard when one doc doesn't really talk to the other, just to drop a line, "thank you for your kind referral"

I take the methylcoba...when i'm feeling run down, as daily messes with my sleep, I don't have any side effects from the shots.
having the tinest of relapses now, all symptoms seem to be just below the surface, with no wheat products for two weeks, don't know how long it take for everything to get out of your system......

gonna post that question on gluten file, and head back over to dr mcdougal,
thanks!
lah