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Those with Raynaud's

Started by jazzlover, October 01, 2011, 12:22:08 PM

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jazzlover

Yes, I know about kefir...was waiting for the smoothie! ;D sugar free, I hope!

thanks for info...I've tried the homemade version...want to try again. Don't care for store-bought.

I may have pernicious anemia...so NEED B12 shots, right??
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

annken

my bloods show that my b12 levels are fine, if not too fine! overdose :)
but does that also mean that i am absorbing it ok?
i have one injection a month.
i had an ileal resection due to crohns disease and thats the place that absorbs vit b12. wonder if testing for the enzyme will see if i do absorb what i am getting.

Nat

Serum (blood) levels of B12 are not indicative of cellular levels. The body has a very complex absorption process in place to get B12 into your cells. It is futile and according to studies, very harmful  to try and circumvent it.  Study after study shows that many of the symptoms of autoimmune disease are directly linked to a lack of cellular B12. The abstract entitled:"Subacute Combined Degeneration with High Serum Vitamin B12 level and Abnormal Vitamin B12 Binding Protein, New cause of an Old Syndrome" states, "futher evidence that serum (blood) vitamin B12 may not be a reliable guide to vitamin B12 deficiency." (certainly not if your spinal cord can begin to degenerate while showing high blood levels)

Jazzlover, the interstitial cystitis is related to homocysteine also. The following study shows that the endothelial bladder cells have high rates of apoptosis. I have posted a study previously showing homocysteine causes the endothelial cells to commit mass suicide.
http://www.mendeley.com/research/increased-number-apoptotic-endothelial-cells-bladder-interstitial-cystitis-patients/


The cranial nerve pain is very likely linked to low B12 also. The Center for Peripheral Neuropathy states, "A clear link has been established between a lack of vitamin B12 and peripheral neuropathy. "

Pernicious anemia is caused by a lack of B12.

Also, the 2 neurotransmitters that regulate the autonomic nervous system are adrenaline and acetylcholine. Acetylcholine is derived from choline. Choline is derived from B12 and folate. The autonomic nervous system regulates the salivary glands. Even government researchers at the NIH are starting to believe that dysautonomia is really what is causing Sjogren's.

I have posted a study showing that lupus patients lack the pancreatic enzyme DNase 1. DNase 1 breaks down DNA and proteins. It is a protease, but you cannot replace it through supplementation. Man cannot duplicate it. This is the missing enzyme that is needed to break down dietary proteins into amino acids and release B12. All of this can be corrected, but you just have to do it nature's way.

I made a strawberry kefir smoothie today. I just added some frozen organic strawberries,raw organic honey to taste and a dash of organic vanilla extract. Pour into a chilled glass and it tastes amazing!

4Kids, that is great that you are doing kefir. Do your kids like it? I am curious too, what kind did you make?

engy

I'm nervous about the kefir because of the yeast in it so I haven't tried it yet but I'm going to soon.

Carie
DX:Sjogrens w/mild Lupus overlap,Hashi,Celiac,Raynauds,Sm.Fiber Neuropathy,POTS,Fibro.,CFS,OI & other dysautonomia.
No thyroid
Fish/Shellfish Allergy

RX:Plaquenil,Synthroid,LCarnitine,CoQ10,ALA,Dribose,Tumeric/Curcumin, Milk Thistle,AdreneVive,Fish Oil,Flaxseed Oil,Magnesium,B12 shots,vit D & C

Patty

When my Raynauds gets really bad my dr has me take Procardia. It works quite well - you just need to make sure your blood pressure does not go too low. I do wear gloves in the house and wool socks and a hat all winter (when I lived in MI) I also have a corn muff that I heat in the microwave and slip my hands into. Standing up and swinging your arms like a windmill looks a bit funny but helps get the blood back out to the fingers. The only way I can really get warm when I feel chilled is a warm bath or shower. My hubby had a steam shower put in when we lived up north and it was sooooo wonderful. (Yes, he spoils me!)

Thanks Nat for posting the info. I am very interested in this as my many ailments could be explained by this. Also my daughter has scleroderma and Raynauds. Interesting.

4Kids

I have been doing kefir for four days? My gas from the metformin has almost disappeared. My hair is falling out less but is that because I am doing better hormonally? No yeast problems yet. Also i am craving protein.
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

Nat

Kefir only has beneficial yeasts. Nothing to be afraid of. They will dominate and eliminate pathogenic yeasts.

You are welcome Patty. Your hypothyroidism can also be explained by an inability to break down dietary proteins. The thyroid hormones, thyroxine and triiodothyronine, are tyrosine based. Tyrosine is converted from phenylalanine. Phenylalanine is found in high protein foods.

You would also expect to see a B12 deficiency is hypothyroidism, if you are unable to break down proteins. According to a study entitled: Anemia in Hypothyroidism," Pernicious anemia occurs 20 times more frequently in patients with hypothyroidism than generally."

Following is a study showing just how common vitamin B12 deficiency is in hypothyroidism. It shows a 40% prevalence of B12 deficiency in hypothyroidism. While the deficiencies found in this study is remarkable, these numbers likely would have been much higher if a more appropriate set of criteria has been used. First, they tested serum (blood) levels. Cellular levels are often much lower. Second, they used an extremely low level to determine a deficiency-133pg/mL. At more than three times that level (500 pg/mL, you will start to see disease symptoms such as memory loss, lethargy, and dementia. In the U.S., current levels used to determine a deficiency are set at 200 pg/mL, the level at which severe changes in the blood cells occur.


jazzlover

#23
thanks...  I'm confused as to whether anything can be done to help my situation...????

re: B12 and protease, etc

Patty.. I take Verapamil on a regular basis for my heart. May be similar to procardia.. I'll check. I already have trouble with it making my BP too low.

Nat.. where do you buy your kefir grains??
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

Nat

Jazzlover, there is a great deal you can do. It is all about restoring your pancreatic enzymes and healing your GI tract. There is a support group that has been started based on this info. It is called Curing Autoimmune and Mimics. They are very helpful. The group is based on my book, but I didn't start the group and I don't post on the site. My daughter does though. She is Naturemommy. You do not have to have read the book to join the group.

I know it sounds bizarre, but you can really trace each and every symptom of autoimmune disease back to these missing enzymes. Even if a disease or symptom is associated with autoimmune disease, you will be able to trace it back. It is not really the name of a disease that tells us it originates with PEDD (pancreatic enzyme deficiency disease), it is the SYMPTOMS of a disease. For instance, gluten intolerance is quite common in autoimmune disease. Gluten is a PROTEIN. If you lack pancreatic protease, you would not be able to digest gluten. Also, B12 is responsible for repairing the damaged flattened villi. Anytime the protein-B12-enzyme pathway is blocked, symptoms of autoimmune disease will arise. Each and every symptom of every autoimmune disease can be traced directly back to missing amino acids, lack of B12(amino acids and B12 come from the breakdown of dietary protein) or missing protease.

4Kids

jazzlover, I live in the great white NORTH. lol. It gets to be -40C here in winter, and we keep our furnace at 17-19C which is 63? to 66?F. It is just hard for us all to breathe when it is warmer to sleep. I might have to go to 20 this year though.

If I could just find the organic fresh sauerkraut. Kefir is a good start, here you can find Organic at the Co-op. I just make a smoothie with raspberries, strawberries, bananas and apple juice and kefir and some yogurt. Hope that works!
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

Nat

Sorry Jazzlover, I forgot to answer your question on the kefir grains. I got mine from a friend. I know you can get them online. Just make sure they are from organic raw milk. The milk you use should come from cows that are on pasture. If the cows were not pastured, the milk will have no B12. B12 is made by organisms in the soil, so an animal must have been exposed to pasture or the meat, eggs, milk etc. will not have B12. 95% of our animals are raised on concrete now. Even most organic milk is still pasteurized and the cows were not raised on pasture.   I know that the members of Curing Autoimmune and Mimics are sending each other grains also.

It is super important that only raw milk is used for your kefir. If it has been pasteurized, the proteins have been denatured and all of the 60 living enzymes and beneficial bacteria have been destroyed.  Amyloids, abnormal peptides and improperly broken down proteins  are what cause the immune response in autoimmune disease. Peptides are just short chains of amino acids. If you are unable to properly break down dietary proteins, you will not be able to make normal peptides.

jazzlover

Quote from: 4Kids on October 02, 2011, 09:09:28 PM
jazzlover, I live in the great white NORTH. lol. It gets to be -40C here in winter, and we keep our furnace at 17-19C which is 63? to 66?F. It is just hard for us all to breathe when it is warmer to sleep. I might have to go to 20 this year though.
-I thought about that later, that you must be talking in Celsius!!  ;)

Nat .. what about a low MCV blood test? Any relation to any of this?
Getting and/or consuming organic raw milk could be problematic for me.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

Nat

Yes, you could get a MCV test. These red blood cell changes are some of the more severe manifestations of a B12 or iron deficiency. Pernicious anemia occurs at around 200 pg/mL and that is considered a pretty  normal level in the US. At around 500 to 550 pg/mL , you would see dementia, fatigue and lethargy.

Here is some info on the association to B12 and iron. I am going to find and post a study that shows how important proteases are in iron absorption.

jazzlover

What I meant was that my MCV bloodwork was low. I believe my dr said my iron levels were OK, so he checked B12 and folate... both OK.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease