CNS Sjorgen's Diet/Natural Remedy Ideas?

[jc447]

I was diagnosed last year, at age 30, with Neurological Sjorgen's w/CNS involvement. Other than being constantly tired and experiencing frequent (seemingly nonstop) brain fog, I'm also finding that my concentration, or lack thereof, is causing some frightening situations to occur. My rheumatologist wants to put me on medication (steroids and such), but I don't want to be stuck on medications for an indefinite period of time. I tried the steroids for a short period in the beginning of this journey, but I'm not too thrilled about the side effects.

I would prefer a homeopathic/dietary/natural plan rather than medication. Does anyone have any ideas or methods that I can try? This condition is greatly effecting my day to day life and I really miss doing fun things with my son. I need to do something about this, but not medication if I can avoid it.

Also, what risks am I taking, by not taking anything for this condition? My rheumy says strokes, seizures, etc can happen in cases like mine. I realize that makes me sound like a fool for not wanting to take medication, but the side effects from the pills are not much better and can actually be worse.

Any ideas?

Thank you in advance!

[Nat]

This group treats their autoimmune diseases through diet with great success. http://www.dailystrength.org/groups/curing-autoimmune-and-mimics-gaining-health/discussions/page-3


Also, if you go through my past posts, you will see why a diet of this nature would be effective. Good Luck!

[jc447]

Thank you, Nat! I'm looking at the group posts right now.

[Suzie]

Wow, the discussions from the link that Nat posted are great - lots of scientific facts, and results of studies being discussed.

The following excerpt from a discussion on that forum, is very interesting for us sero-negs:

"If you look over the reasons the NIH gives for challenging the assumption that Sjogrens is autoimmune driven such as, " Animal models of Sjogren's develop glandular dysfunction long before they develop autoimmunity" and " At least 20% of patients have no evidence of systemic autoimmunity" this is indicative that it is a dysfunction in the ANS and not the immune system attacking the exocrine glands.( that is what led the researchers at NIH to conduct the study).

The symptoms of Sjogrens such as vertigo, incontinence, ataxia, etc. fit dysautonomia to a tee. There is no evidence to show that Sjogrens causes the GI tract to dry up."

Ya boo sucks, to the 2 rheumatologists I saw who said it's ONLY sicca, nothing we can do, go away.

"The most important thing I think is that there is no evidence that the immune system ever just attacks normal tissue in autoimmune disease. All of the evidence shows it is reacting to abnormal proteins, such as the abnormal peptide found in diabetes, the abnormal peptides in rosacea, the lupus nets in lupus, etc. So, even if the immune system was targeting moisture producing glands, the evidence shows it would be due to either the presence of amyloids or abnormal peptides. And these are both the result of the lack of pancreatic proteases."

[schika]

Thank you, Nat! It is a helpful site!

[Meld256]

Hi jc447,

Welcome to Sjogren's World!    I think you'll find lots and lots of info. here and many helpful people. 

Nat's given some great information about studies and research.  You can also use the "search" box here on the site and look for anything at all.  It's probably been discussed sometime.  If not, please post and ask away!

We look forward to hearing more from you. We're glad you're here.
Melinda

[Chickpea]

Hello and welcome jc447!

I started this journey with an MS diagnosis nearly 6 years ago.  From there to 'limboland' for a year or so and then 3 years ago I too was given the Sjogrens-with-central-nervous-system-involvement diagnosis.

I've always used homeopathy and acupuncture for health maintenance and treatment, and taken great care with my diet.  So it was a shock to start taking steroids, Plaquenil and then immunosuppressants. 

My neurologist and rheumatologist both told me that immunosuppressants don't offer a cure but simply a slowing-down of the development of symptoms.  It's been a bumpy journey with quite a lot of side effects to deal with.  In my experience each immunosuppressant only has an effect for a limited time and then you have to cope with the side effects of a new one. 

Would I have more 'episodes' if I wasn't taking these medications, as your rheumatologist has suggested you might?  Who knows?!  I really don't think it's fair of him to suggest this to you. 

However, I'm not sure that the side effects of the meds are worse than the 'episodes' or the damage they cause.  (I use the term 'episodes' rather than strokes or seizures because they vary so much and I'm not sure the other technical terms are appropriate.  Or helpful.)  My neuro symptoms have developed both gradually and in great leaps, most of which follow one of these episodes/mini strokes.  The side effects of the meds have affected me in different ways eg osteoporosis which is (partly) due to steroids. 

What I've learned that I hope might be helpful(!) is to be open minded about every possible treatment.  Research all the pros and cons - and people here know more than almost anyone!  Keep notes so you learn about your reactions, symptoms, feelings.  And take the best care of yourself with delicious nutritious food, and lots of treats.

Thinking of you - Chickpea

[Nat]

Jc447, as you can tell from the comments from the moderators here, you have found a great site. Kind and caring people, eager to help in any way they can. I am so glad I found this site and I think you will be too.

Suzie, "Ya boo sucks!" That is too funny. The info you posted was from my daughter Kristin. She is Naturemommy on the site.
You are welcome Schika. Nice to meet you.

[LizPetillo]

All I know is that sugar and carb foods like bread and pasta and ice cream, etc, are bad ... pretty much across the board.  Avoid them. 

[jc447]

Thank you everyone for the great posts, advice, etc. Already, this forum has proven to be of great help. After 1 1/2 years of researching this condition and it's many symptoms, this forum has by far been the best place for answers. It's great that we can all relate and I look forward to 'getting to know' you all.  Thank you, again!

[Joe S.]

Welcome jc47. I use alternative therapies and supplements.

[jazzlover]

All I know is that sugar and carb foods like bread and pasta and ice cream, etc, are bad ... pretty much across the board.  Avoid them.

Amen

[KellyG999]

I use a few different things, but you may want to check with your doc first.

I use Grapefruit Seed Extract to help keep yeast at bay. Just a few drops in water every day does the trick for me. It also helps the immune system overall.

I also use FOS powder (fructoogliosaccharides?) to heal my "leaky gut." It has been explained to me that leaky gut allows toxins to enter one's bloodstream instead of containing and eliminating them from the intestines. I actually had my blood drawn which showed I do in fact have this problem. Makes sense if you think about it.

I use magnesium to help with sleep and also helps the constipation. (fun, huh?)

That's what comes to mind. I think there's more...

KellyG