Alternative Supplements: Looking for experiences.

[Christine435]

Hello!

I recently started seeing a naturopath. I have very involved Primary Sjogren's. He started me on low dose naltrexone which I am starting to see some benefits from and I also am on 3200mg/day of Omega 3 fish oil (wonderful mood stabilizer BTW).

I am gluten/dairy-free and am considering trying a paleo diet but am struggling with esophagus/swallowing issues so that is on hold at the moment. Also undergoing some allergy testing.

I have been reading some info. about sea buckthorn oil for Sjogren's as well as evening primrose oil and borage oil. I would like to discuss these possibilities with my naturopath (also an MD) at my next visit so I am wondering what people's experiences are with these supplements.

I also understandf that evening primrose oil and borage oil are 2 separate things and am trying to find out if one is more beneficial for Sjogren's than the other and which do people prefer.

Thank you so much!!   

[Joe S.]

With the methods listed below I was able to achieve remission.

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[Sleepy In Seattle]

I have Lupus and Sjs, and I use "regular medicine" treatments as well as some supplements, including lots of fish oil - here's what else has helped me (in case you want to explore any of these with your doc):

Magnesium Glycinate (200mg) helps with aches, pains, migraines
CoQ10 (100mg) does the same
Vitamin D (2,000iu) keeps my levels up in a healthy range (I did have to take huge prescription doses for a while to get it there to begin with, but 2,000iu/day seems to be keeping it there now)
DHEA (low-dose - 10-20mg/day) helps with brain fog
Zyflammend (herbal anti-inflammatory with tumeric, rosemary, etc) helps with aches and pains
probiotics keep my digestion healthy and moving along
B-complex multivitamin helps keep skin and hair healthy
extra sublingual B-12 helps when I am feeling low-energy for a day or so.
I also eat about a cup of fresh pineapple every morning, which seems to help with inflammation and digestion.

And I take folic acid to counteract side-effects of Methotrexate.

On that regime, I'd say I am probably 85-95% of my "old normal", where two years ago I was at maybe 20%. I still have to be careful about sleep, diet, etc. (I am gluten-soy-dairy-free, and consume only about 5-10% grains - essentially a Paleo-type diet, but without any beef - and I try to eat mostly simple, organic foods - not a lot of processed stuff. No alcohol, because of the Mtx, and TONS of water, because of the Mtx. I DO eat some sugar, and small amounts of COFFEE. A girl's gotta have SOME fun! :p )

Good luck - let us know any good tips! It's nice to find a doctor who can help you take a balanced approach.

[ohiolady]

I take a number of supplements listed in my profile.  I can tell you Tumeric has helped tremendously with parotid gland swelling.  I used to wake every morning with swollen glands.  After being on Tumeric for awhile this went away.  Recently, over Christmas, I let myself run out for three weeks and the parotid swelling came back.  I use New Chapter Tumeric Force.  New Chapter has high quality supplements.

Anna

[Christine435]

Thanks for the info!

I am actually not seeing a naturopath. He is an Integrative Medicine doctor and there is a difference. Sorry for the stupidity...LOL.

[prunella]

Love that fish oil! Really helps with dry eyes. For me, flax oil is not as effective. I switch up the fish oil with kria oil.

Christine, sounds like you are doing lots of good things and have a good doctor. Paleo works for lots of folks, especially those with type O blood. Type O's digest meat well. I am blood type O and I don't really like meat or poultry, but I feel better when I eat it.

[Sooki]

For energy and brain fog, I take alpha-lipoic acid, acetyl L-carnitine, and D-ribose, the latter two at very low doses as they seem to be quite powerful.  I also take DHEA at a very low dose (5 mg) to help me feel like exercising and build muscle.  These have helped immensely and I feel it immediately if I skip a day.

Vitamin D3 really helped when my level was low. I'm now around 40K and that made a huge difference.  I take B12 as well but I'm not sure I've seen a difference.

I've started on Paleo, but I'm not sure whether it's helping.  I think my joints feel better in general.  I'm not much of a meat eater, but avoiding grains altogether does seem to help.

Raw sauerkraut helps me with digestion.  And coconut oil seems to feel good as well.  I mean to eat fish oil daily, but I just can't bring myself to do it.