Yes!! I Found a Book to Help Autoimmune Sufferers

[farmgirl]

I am so excited I gotta share!

I suffer from dry eye diagnosed in part, with a biopsy, as Sjogren's. To that end I have decided that I am going to end my suffering if possible by treating the root cause - my autoimmune condition. I have made a few discoveries so far and am being treated by a holistic doctor and a naturopath (they offer different treatment modalities). The most exciting thing that I have discovered so far though is a book which backs up the findings that I have made so far with regards to the testing that I have had done. I think I am on to something and would like to share. The book is called 'Autoimmune The Cause and the Cure' by Annesse Brockley and Kristin Urdiales. I bought it online. Annesse had Lupus but she has extrapolated her findings to pretty much all autoimmune disorders. For those of you so inclined to want to rid yourself of the root cause I believe that this could be an invaluable tool. I wish you all luck...cheers....F/G

[farmgirl]

Rebecca I think I put this in the wrong place. I think it should have been under:

Forum:
Auto-immune diseases (Sjogrens, RA, Lupus)

I didn't see that one so please change it if you think that would be better...thanks...F/G

[jenny2008]

hey farmgirl.. i am having my local library order this book for me.... thanks for letting us know.... it looks similiar to the GF diet i had tried-however i didnt implement the fermented foods except for apple cider vinegar once in awhile... my ND advised me to but i dont care for those foods -but if they can help.. keep us or at least me posted and i will do the same with u once i get the book..since we both have sjogrens.. good luck!

[farmgirl]

Hi Jenny: Actually it is far more enlightening for me than just the diet, I haven't even got to that part yet. What I have discovered which the book backs up is that I don't metabolize B12 because i am lacking a pancreatic enzyme. That totally explains all of the weird neuropathies, numbness and tingling that I have experienced off and on through out the years. But more than that it explains why I am teetering on hypothyroidism, diabetes and the high homocystine levels that put me at risk for heart disease. I am now getting B12 injections and am on supplements to lower my homocystine levels as well as another to help me better regulate my blood sugars. I am also taking digestive enzymes to supply the enzymes that I am missing. We are watching for the TSH numbers to come down as well. I am very excited as I had no idea that I had the problem with B12 in the first place and no clue that I was at risk for all of these other things. Wow! what a revelation. Hopefully as my body replenishes it's stores of B12 I will be able to regulate all of these things on my own and the autoimmune will just disappear. Gotta go study the diet part. For sure I will keep you posted..cheers...F/G

[jenny2008]

Thanks for letting me know! my b12 was tested-a blood test and it came back normal.... How did you find out about your b12 issue? did you doc figure it out??

[farmgirl]

The book says:

I often hear, "I've had my B12 levels checked, they are normal." Let's take a closer look at the meaning of the word 'normal'. She then goes on to say: " The levels of serum B12 considered 'normal' in the US are vastly lower than that of other countries like Japan and some European countries. American medial opinion defines blood levels lower than 200 pg/ml as an indication of deficiency. This number is based on the level associated with the most severe manifestation of deficiency, which is pernicious anemia. Physicians in Japan and other countries consider blood levels of 500-1300 pg/ml to be the normal range. If you are within the 'normal' range in the US, you have a severe deficiency -enough to cause pernicious anemia."

That could totally explain why you are considered to be within 'normal' range and yet could be highly deficient. My test didn't give a number it just gave a rating of 'high need'. I had my testing done through Genova Diagnostics in Asheville, NC.

Are you working with a naturopath?...F/G

[farmgirl]

Jenny: I just found this on the internet which could help to clairfy. My homocysteine levels were also high.

Serum B12 levels are often low in B12 deficiency, but if other features of B12 deficiency are present with normal B12 then further investigation is warranted. One possible explanation for normal B12 levels in B12 deficiency is antibody interference in people with high titres of intrinsic factor antibody.[25] Some researchers propose that the current standard norms of vitamin B12 levels are too low.[26] In Japan, the lowest acceptable level for vitamin B12 in blood has been raised from about 200 pg/mL (145 pM) to 550 pg/mL (400 pM)

Serum homocysteine and methylmalonic acid levels are considered more reliable indicators of B12 deficiency than the concentration of B12 in blood.[28] The levels of these substances are high in B12 deficiency and can be helpful if the diagnosis is unclear. Approximately 10% of patients with vitamin B12 levels between 200–400pg/l will have a vitamin B12 deficiency on the basis of elevated levels of homocysteine and methylmalonic acid.[

More to ponder...F/G

[spmcc]

There are also medications that can cause B12 deficiency: female hormones/HRT/birth control pills, antacids/ulcer meds, anti-inflammatories (corticosteroids: prednisone, medrol, etc.), anticonvulsants, diabetic drugs (e.g., metformin), antivirals and macrolide antibiotics (erythromycin, biaxin, azithromycin, zithromax).

Antibiotics such as neomycin, streptomycin, penicillins, etc. affect the absorption of all the B vitamins.

The tetracyclines (which is what we are usually on) can affect absorption of calcium, magnesium, iron, vitamin B6 and zinc.

You can google something like "drug induced nutrient depletion" for tons of info.

[farmgirl]

Good info thanks spmcc

The book also indicates that supplementing B12 does not correct the deficiency as it is usually caused by a lack of the pancreatic digestive enzymes necessary to break down the dietary proteins that release and absorb B12 in the first place. My naturopath has placed me on digestive enzymes as well as B12 injections. She says that the B12 injected into the muscle makes it more bioavailabe. I am not sure the author of the book agrees as I haven't got to that part yet but I do recall seeing it mentioned somewhere in my initial scan of the book. So if you have a deficiency to begin with and then add into the mix some of the above mentioned medications you could be making a bad situation worse. Also, according to the book, if you are deficient in B12 you will also be deficient in B1 as without B12 you cannot absorb B1. Lack of B1 will result in the gradual degeneration of the autonomic nervous system. Secretion of saliva is under the control of the autonomic nervous system which controls both the volume and type of saliva secreted. Hence B12 deficiency is strongly implicated in Sjogrens.

[Guest]

Thanks for posting about this Farmgirl - I just ordered the book from Amazon. After seeing how much better I felt after trying Brady Barrows' Rosacea Diet (in Rosacea 101), I figure I may as well see what else I might learn that could help me. I'm at a very high risk of MS apparently (single episode of optic neuritis many years ago plus lovely lesions in my brain... oh joy)

Yesterday at work my right arm felt sooo heavy and weak just from holding a pen, typing, moving the mouse and other similarly light "work" for 5 hours... how ridiculous that holding a flipping pen could totally tire out that arm...err... that can't be normal for a mid-30's person surely... and needless to say I'm a tad bit freaked out about that. Woke up this morning and my right arm still felt exhausted... feels like I've been working the muscles really hard when I haven't been... how odd... Hoping it's nothing... has happened before and it never lasts more than a few days... sigh. Time to bust out a few pushups for strength training... err... so I'll be strong enough to hold my pen at work? Good grief...

Not going to the doctor though since all that will do is bring on a referral to the neurologist and most likely having to decide whether or not I want to start those freaking expensive and possibly unpleasant MS drugs... oh lovely... might as well ponder it more from the comfort of my home.

And, couldn't seem to sleep for more than 4 hours last night since mind just wouldn't shut off, so my bad eye, the left, is sore as all heck today... man oh man...

Sigh...

Anyhow... looking forward to checking out this book!!!

[farmgirl]

Gees Saag I remember that feeling, just one of the weird neuropathies I have had off and on for years. In one of my diaries I noted 'My right hand is heavy and rubbery. I feel rubbery, tired and drained all day.' 2 days later I wrote 'As I sit to write this my hands feel clumsy and tingly.' I had to keep diaries as the symptoms varied so much from day to day. I think it was at that time that I was referred to the MS clinic but it was quickly ruled out with an MRI (thank you God!). Nothing was ever explained, the stuff just came and went but NOW I know what it was. One neurologist ordered nerve conduction studies and told me I had carpel tunnel (even though I had never had carpel tunnel symptoms). He couldn't explain how that would affect my feet and legs and 10 years later I am still carpel tunnel symptom free but he just wanted me to go away and it worked, I did because I concluded he was an idiot.

I am sure you will learn much from the book that applies to you, I wish you well....cheers...F/G

[jenny2008]

ok i just read this book..... what does everyone think?? i got it from the library..anyway. the author talks about eating fermented foods-making them yourself but doesnt go into detail how to do so.... and yes i read about the b12, etc.. all that stuff......

i didnt really see a 'cure' so to speak.. the book just kind of ended...what did you think? anyone trying the fermented foods, diet? etc/??

[Guest]

Hey Jenny,

I'm still working my way through the book... I'm not totally convinced that everything she says is gospel, but, am trying to keep an open mind... the thing I don't like is that she makes it sound like she has the cure for all autoimmune disease - to me, that's oversimplifying things. However, I'm still reading... curious about what else is in there...

And yes, the whole making your own fermented foods thing seems a tad bit overwhelming... I can't imagine doing that... but part of me thinks it would also be interesting to know how to make some of those foods from scratch just for the heck of it... thinking about experimenting... In any case, if I try making my very own fermented foods, I won't start until probably close to Christmas... too much other stuff on the go in the next few months. If anyone else gives it a go, I'd love to hear about how it went!

err, actually what am I thinking... Christmas is crazy busy too... maybe in the new year I consider experimenting with fermented foods...

[farmgirl]

I agree Saag I don't think everything she says is gospel but man I felt like I got a whole lot out of the book and felt that, for me at least, a whole lot of puzzle pieces fit together. I have to admit I have not gone on the fermented diet partly because 2 of the things I am supposedly sensitive to (and there weren't many) are yeast and dill. All fermented foods are yeasty and pickles are dilly so good excuse. I am however replenishing those bacteria with QUALITY probiotics and taking digestive enzymes to help digest the proteins as well as getting B12 shots to try to make up the deficiency. I'll think about following the diet if that doesn't work, not sure where I'd find the raw milk for the kiefler though!

If I had lupus or RA or fibromyalgia I would probably make the effort sooner I have to admit but I just tried to weed out what she was saying specifically about Sjogren's. For me it was kind of mind blowing how much I could relate to what she was putting out there based on my history and current findings at the naturopath though...my thoughts...F/G

[Annesse]

Hi Guys~I just thought I'd pop in here and see if I could answer any questions. What do you mean everything I say is not gospel?! LOL!

Anyway, one of the first things is, you really don't need to make your own fermented foods. There are some good resources listed in the back of the book. If you can that is great though. It took me some time to get going making my own.

Does anyone have anything they would like clarified? We have also made some new connections to Sjogrens and protease and DNase1.