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Sjogren's Syndrome

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 Posted 1/21/2012 9:28:25 AM
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Hi there,

My name is Rachel, I'm 24 years old and have finally been diagnosed with Sjogren's Syndrome this week after years of symptoms, the last two years being debilitating. My ANA tested positive for Anti-SSB and I have 95% of the symtpoms: Severely dry eyes, mouth, skin, nose, dry cough, gastritis, GERD, IBS, abnormal liver function tests, kidney stone, memory loss/brain fog, difficulty swallowing, dental decay, Raynaud's, muscle and nerve pain, inflamed lymphs, autoimmune pancreatitis, mouth and throat sores, insomnia and a few others I've surely left out.

I've researched extensively, diagnosed my own disease via blood tests after waiting for my doctors to do SOMETHING for 2 years aside from tell me it's all in my head, have appointments with specialists being lined up currently, and I have lots to talk about.

I'm hoping to start a discussion with others suffering from this disease. I'm specifically interested in hormonal imbalance and the role it plays, thyroid dysfunction, and supplements, as well as sharing my experiences with regard to the above.

Also, feel free to message me if you'd like to open a dialogue. : ) I look forward to hearing from you.

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Post #4923
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 Posted 1/23/2012 4:53:31 AM
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Welcome to the Forums, Rachel.

Have you looked at Life Extension's information on the subject at http://www.lef.org/protocols/immune_connective_joint/sjogren_syndrome_01.htm ?

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 Posted 3/25/2013 8:43:04 AM
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Hey Rachel,

I'm 26, diagnosed with Sjogren's for 3-4 years, now. I had most of your symptoms minus abnormal liver function, kidney stones and dental decay (I drank water like it was going out of style to try to retain moisture in my mouth). 

I don't know specifically what the literature says about hormones and Sjogren's, but I do know inflammation is at the root of it. Since changing my diet four months ago (no wheat, minimal added sugar, legumes, or processed food), my hormones seem to be better aligned and my inflammation, including asthma and allergies is greatly reduced. I sleep better, my once debilitating cycle is 70% less painful, my hair is growing like wildfire, my mood is more stabilized than it's ever been off-meds, weight loss isn't as stubborn as long as I do the work. 
Hay fever, animal, and food allergies are decreasing. Four years ago, I went to the ER when my throat started closing from drinking milk. Now I drink raw dairy, no problem. My brain fog is gone and I haven't had a debilitating flare up in four months. I've had a few days that aren't as good as the rest, but my body's still adjusting and I'm still able to go about my day [vice being in bed all day]. I take a couple of supplements to help me recover and for adrenal support, which seem to help both my inflammation and allergies. Additionally I haven't had any enlarged glands or an enlarged thyroid  which I've had before. In my experience, reducing inflammation is the ticket to handling Sjogren's [and not letting it handle you]. 

In your discussions with your health care practitioner, push them to explore whether or not you have a secondary diagnosis to help you zero in on your condition. As I'm sure you've learned autoimmune issues are something most of them aren't well versed in, and you really have to advocate for yourself. Also, research the link between leaky gut and autoimmune disorders. Good luck getting healthy.

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 Posted 3/25/2013 8:44:58 AM
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Welcome to the Forums, allcet and thanks for sharing this helpful information.

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 Posted 3/26/2013 9:34:43 AM
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You could check into this Doc's website as he lists Sjogren's as a disease he treats with LDA immunotherapy. There are about 100 docs that use his protocol around the country. If you call his office, you can ask how successful the therapy has been with Sjogren's. I'm taking the LDA shots for asthma with some success. I'm also doing some adrenal, thyroid and other hormone replacement therapy for the asthma too, seems like autoimmune diseases & hormones are linked in some way, so I think you're on the right track. 
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 Posted 5/1/2013 9:41:24 AM
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Recent article in LEFs news section - Findings suggest vitamin D benefit in Sjogren's syndrome
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 Posted 7/22/2013 10:19:25 AM
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Hi All,

I have been dealing with Hypothyroidism for 30 years and have most of these symptoms, (not dry eyes/mouth or liver) and Raynaud's yet attributed it to the thyroid issue. After 25+ years on Synthroid with plenty of remaining symptoms, I took matters into my own hands about 3.5 years ago and switched to Armour Thyroid and went gluten/soy/sugar free but have kept raw dairy. The results were nothing short of miraculous! Dry skin/hair, brittle nails, fatigue, brain fog, chronic sore throat/cough/bronchitis, fear/anxiety and panic attacks, angina, palpitations/racing heart, asthma and allergies/rashes, insomnia, HKPP all went away! The Raynaud's is better, but not totally gone, plus I lost 15-20 lbs I didn't know I needed to lose. Around this time my doctor tested a bunch of things and said I had all the markers for Sjogren's, but didn't seem to have any symptoms. Six weeks ago I tested positive for Hashimoto's. It's taken me years to get any endocrinologist to test anything other than TSH or total T4 or total T3 (useless), so I guess this doesn't surprise me, but it does annoy me, what took them so long?

Around the time I made all these changes to my diet, food began getting stuck in my esophagus, not my throat mind you. So I wasn't choking in the strictest sense of the word, but it became increasingly difficult to breath and was darn scary anyway. The first time it happened I spent 2.5 hours in the emergency room until I was able to clear the stuff out. I am able to 'take care of it' now, but it is thoroughly annoying and still scary. I know I didn't suddenly forget how to eat, so my question is; does this happen to other people with Sjogren's? I haven't been able to identify any particular food that sets it off, but cooked carrots (not raw) are in the lead. Can anyone here shed any light on this?

Thanks for your help! I'd like to think I'm not going crazy, because I just came back from there.
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 Posted 7/22/2013 3:04:56 PM
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In addition to the suggestions given in the LEF protocol, I would add 7-Keto DHEA.  This supports thyroid function and metabolism.  And, as an interesting side effect, it increases production of saliva!
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 Posted 7/25/2013 8:42:38 AM
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Thanks Transpower, I started the 7-Keto a couple of months ago but have still had an episode or two. I'm still not sure if this is related to Sjogren's or not, as scope showed no scar tissue or other abnormalities, so I was wondering if others suffer from a blockage in this area.
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 Posted 1/8/2014 7:45:30 AM
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Check out http://www.lowdosenaltrexone.org/ for sjogren's. Seems some have had good results.
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