What causes sjogrens syndrome

[Annesse]

That is quite interesting Snow Leopard. The study states,"In the present study, it was determined that 'the sicca symptoms of SS' are common in CFS patients and were irrelevant to the drugs used. In addition, CFS patients frequently had positive results on the Schirmer, Rose Bengal and gum tests."

It continues, "There is controversy as to whether CFS is the same disease entity as fibromyalgia. It is impressive that the 'sicca symptoms' are listed as additional main clinical features in fibromyalgia. Actually, 36 of our 75 CFS patients (48%) met the classification criteria for fibromyalgia."

 

[Wayne]

Peptide Injections and Sjogrens Syndrome

I haven't read this thread, but wanted to mention that a poster over on the ProHealth board just recently started doing some "peptide" injections. One of the very first things she noticed was a complete cessation of all her Sjogrens Syndrome (within 24 hours of her first injection). I believe this indicated that her symptoms were a result of an auto-immune disorder. Here's a link:

First Peptide Injection Yesterday

Regards, Wayne

 

[Annesse]

Both Sjogren's and CFS have dysregulated tumor necrosis factor (TNF). TNF causes the swelling of the parotid glands and other swollen glands. It can also cause a sore throat and low grade fever even when there is not an infectious agent present. I recently posted a study that shows TNF is also dysregulated in CFS. Pancreatic enzymes called proteases are responsible for degrading TNF factor when necessary. If you lacked them, you would not be able to properly regulate TNF. These same proteases are also one of the body's first line of defenses in fighting bacteria and viruses. TNF is a normal and very necessary part of the immune system. It just needs to be regulated properly.

The following study states that not only is TNF elevated in the exocrine glands of patients with Sjogren's but it also states that TNF is an important contributor to secretory dysfunction in Sjogren's by disrupting the integrity of the salivary epithelium.

 

[SaraM]

consider spreading your dose into minimum twice a week to get more even blood levels like .25mg mon and thurd to give u a total dose of .5mg for the week. Tablets are small so maybe cut them in half then crush it and halve the powder and put it in own capsules.

Ok, Heaps. Thanks for the tip.

 

[Annesse]

Here is the study link.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2584989/

Here is the link on CFS and tumor necrosis factor.

http://www.ncbi.nlm.nih.gov/pubmed/8148443

 

[Annesse]

Since the thread is titled, "What causes Sjogren's", I think this next comparison is still on topic. I think the same thing that causes Sjogren's, also causes CFS and Fibro. Another thing they share in common is restless legs syndrome. A study published in the Journal of Clinical Sleep Medicine found that 33% of patients with fibro had restless legs snydrome. RLS is a common finding in CFS also. Here is a study that shows it is also common in Sjogren's.

http://www.ncbi.nlm.nih.gov/pubmed/8252317


So, what causes restless legs syndrome? Here is a study that shows it is linked to low dopamine and iron.

http://www.ncbi.nlm.nih.gov/pubmed/15222997


The study I posted above showed that 51% of the Sjogren's patients tested had low iron. Dopamine is necessary for adrenaline (autonomic nervous system neurotransmitter) Dopamine comes from tyrosine. (Both of the thyroid hormones come from tyrosine.) 33% of Sjogrens patients had Hashimoto's.

33% of fibro patients have RLS. Dr. Woods, the Scientific Director of the Fibromyalgia Association of America has discovered that fibro patients lack dopamine and have low iron.

Studies confirm that CFS patients also lack iron and have low dopamine. In the study entitled, "Serum concentrations of some metals and steroids in patients with chronic fatigue syndrome with reference to neurological and cognitive abnormalities" it states, "The results indicate that patients had SIGNIFICANTLY increased aluminum and DECREASED IRON compared to controls.

So, what causes the lack of dopamine and iron in these diseases?

Dopamine is derived from tyrosine and tyrosine is derived from phenylalanine. Phenylalanine is found in HIGH PROTEIN FOODS. If you lacked the same enzymes that are responsible for regulating tumor necrosis factor (proteases) you would also not be able to break down high protein foods and release phenylalanine. Iron is also found primarily in these same foods.

There is another reason though why there is a lack of iron in all of these diseases. The same proteases that regulate tumor necrosis factor, and break down high protein foods, also regulate iron absorption in the body. Here is a study that shows this.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430097/

 

[xrayspex]

Annesse I found my bvit test: VITAMIN B12 1135(my value) 211 - 946(range)
I just tested positive for sjogrens indicated by the ssb la this year, not super high number but had positive schirmer in past and have lots of symptoms. actually just found out have a corneal abrasion in one eye even tho use drops all day preventively. What do you make of b 12 test? I am going to request Rheum factor test and more tests for lupus and maybe even ms, I dont fit any of those pix exactly but a few things similar under all of them. I need to get another root canal now too which is causing systemic pain at times and I take excellent care of my teeth. These eye and teeth probs are believed to be result of my sjogrens.

I want to look into doing more like an immune modulator. all we do is try to treat pain a little right now but so many meds I cannot tolerate. my friend with RA is on methtrexate and is able to do a lot more activities than I, but if I cant handle a dustsize piece of an snri or antivirals and most meds I am skeptical could tolerate methotrexate, even my friend went thru at least 6 months of feeling worse before she felt better, I dont know if I have it in me to put up with that if I could tolerate the med because would want guarantee would eventually feel better. I tried LDN for 6 mo.s once it helped some things but ultimately was too hard to tolearate, I had to get dose down almost homeopathic but it wasnt strong enough to handle bad pain flares with spine. Not sure what to do.

 

[Annesse]

Hi xrayspec, I can PM you some ideas so we can keep the thread on track.

Other common symptoms that CFS and Sjogren's share are related to the lack of B12. Cerebral white matter lesions and peripheral neuropathy are found in both diseases. Here is some info from Sjogren's World on peripheral neuropathy and Sjogren's.

http://www.sjogrensworld.org/peripheral_neuropathy.htm

Here is a study on the white matter lesions found in Sjogren's.

http://www.ncbi.nlm.nih.gov/pubmed/10381047 (We had a discussion on the white matter lesions found in CFS on the recent thread about CFS and MS)

Here is a study on the association to lack of B12 and white matter lesions.

http://www.ncbi.nlm.nih.gov/pubmed/18977824

And here some information from the Center for Peripheral Neuropathy at the University of Chicago on B12 and peripheral neuropathy. It states, "Additionally, a clear link has been established between a lack of vitamin B12 and peripheral neuropathy."


http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/typesofpn/systemic/nutrition.shtml

B12 is necessary to maintain myelin. Loss of myelin along the axon of the nerve cell would lead to neuropathy.

So, why the lack of B12 in Sjogren's and CFS?

B12 is only found attached to dietary animal proteins. If you are unable to break down proteins, because you lack proteases, you would not be able to release vitamin B12. Also, here is a study that confirms these enzymes are ESSENTIAL for the transport and absorption of B12 in man.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC371670/ (Cobalamin is B12)

 

[Annesse]

Another strong connection between Sjogen's and CFS is primary biliary cirrhosis. Primary biliary cirrhosis is inflammation in the liver with progressive scarring of the bile ducts. Itchiness, fatigue, a dry mouth and eyes, and jaundice are common. Here is some information on it's connection to Sjogren's.

http://www.annals.org/content/79/1/31.abstract

Here is some good information on CFS and primary biliary cirrhosis.

http://www.prohealth.com/library/showarticle.cfm?libid=9616

If all of these diseases originate with the lack of proteases, we should be able to find the same autonomic dysfunction, neuropathy, lack of B12, dysregulated tumor necrosis factor and a connection to hypothyroidism in primary biliary cirrhosis as we have in CFS and Sjogren's. After all, these are just the shared symptoms of a common cause. Here is a study that shows autonomic dysfunction and peripheral neuropathy "are frequent in primary billary cirrhosis".

http://www.ncbi.nlm.nih.gov/pubmed/15378789

Here is a study that confirms elevated tumor necrosis factor. This is likely what is causing much of the damage to the bile ducts, just as it does to the parotid glands.

http://www.ncbi.nlm.nih.gov/pubmed/11966951

This study confirms low B12 and resulting high homocysteine, which would damage the endothelial cells. In fact, studies show endothelial cell damage in primary biliary cirrhosis.


http://www.ncbi.nlm.nih.gov/pubmed/16570355

And here is the same connection to hypothyroidism.

http://www.ncbi.nlm.nih.gov/pubmed/6628157

 

[Annesse]

Hi Wayne, thank you for the link. I did check out the posts. The body does produce abnormal proteins in autoimmune disease. I posted some information on the abnormal peptide in diabetes discovered at Anshutz Medical Center in Colorado on the recent thread on MS. I also posted some info on the study done at UCLA that discovered 100% of rosacea sufferers had abnormal peptides on their skin.

Abnormal proteins are being found in CFS also. This was one of the findings in the spinal tap studies. They discovered proteins suggesting small amounts of bleeding in the brain could be caused by the aggregation of proteins (amyloids) in the blood vessels. Here is something Cort wrote about these amyloids.

"Amyloid proteins are proteins that generally get folded improperly as they are being made. Since shape in a protein is everything - proteins trigger cellular activity by locking into each other like 3-dimensional keys - improper folding can turn a protein useless or even dangerous."

Amyloid proteins are peptides that get folded improperly as they are being made.


The body makes the proteins it needs to grow and maintain itself from the dietary proteins we ingest. Proteins yield amino acids, which are the fundamental structural elements of every cell in the body. If we are unable to break down dietary proteins, then our body would not have the necessary amino acids to form normal peptides. Yes, the immune system does recognize them as foreign and launch an immune response. That is because they are not being made correctly due to a lack of raw materials. So, I don't understand the premise of taking peptide injections to address this problem. The person said this would somehow train the body how to make normal peptides. The body hasn't forgotten how to make normal proteins, it just doesn't have the necessary materials it needs. This is evident from the missing amino acids found in CFS for instance. Phenylalanine, tyrosine, tryptophan and all of the other amino acids that come from the break down of high protein foods are lacking in CFS. These amino acids go on to make our neurotransmitters and hormones such as adrenaline and dopamine. These are all found lacking in CFS. As are the minerals and vitamins that are found in high protein foods such as zinc, iron, vitamin D and vitamin B12.

The ability to form normal peptides would be a step forward, but if our bodies still can't release amino acids and other vital nutrients from proteins, we will not be able to recover.

 

[undcvr]

Wow Heaps this is the first time I have ever heard you mention SS before. I didn't even know that you even thought about it. So can you get your salivary glands checked out or can you get an ANA test ? My ANA came back neg.

I generally do not have anything wrong with my eyes but this last relapse caused the area around one of my tear ducts and red. Most of it has gone away now but it is still mildly red, is this a concern ? I used to have problems with my eyes in that I had to blink alot before my vision could focus. Is that the symptom for dry eyes ?

 

[heapsreal]

Wow Heaps this is the first time I have ever heard you mention SS before. I didn't even know that you even thought about it. So can you get your salivary glands checked out or can you get an ANA test ? My ANA came back neg.

I generally do not have anything wrong with my eyes but this last relapse caused the area around one of my tear ducts and red. Most of it has gone away now but it is still mildly red, is this a concern ? I used to have problems with my eyes in that I had to blink alot before my vision could focus. Is that the symptom for dry eyes ?

I had a anti nuclear antibody test done which was neg, also neg to ENA screening, ss-A antibody, Ro-52 antibodys, ss-B antibodies. My esr also tested low, uric acid and cholesterol together can indicate increased inflammation

I have very red tender eyes all the time and saline drops didnt help, red eyes drops help for a few hours, then i go back to looking like apot smoker, lol, which i dont. So auto-immune things has crossed my mind, just nothing showing up.

cheers!!!

cheers!!!

 

[undcvr]

I Know that it is autoimmune even if they cannot prove it yet and I also Know it is a rather serious form of it cause it is basically the immune system attacking the immune system. I don't think that in our cases immunosuppressants should be looked at in a neg way. Something somewhere (probably defective B cells) is making autoantibodies that is causing all the havoc. I don't know why they cannot find it, could be a very fundamental antibody.

 

[Annesse]

Sjogren's syndrome, primary biliary cirrhosis and CFS also share severe pancreatic dysfunction. The following study on the pancreas and primary biliary cirrhosis states, "PANCREATIC INVOLVEMENT IN PRIMARY BILARY CIRRHOSIS IS CLOSELY ASSOCIATED WITH SJOGREN'S SYNDROME."

http://www.ncbi.nlm.nih.gov/pubmed/7129026



The following information on CFS states, "Pancreatitis is not uncommon and may cause acute, severe pain: pancreatic exocrine insufficiency leads to malabsorption, which is a well-recognised feature found in the more severely affected; some patients have ALMOST NON-EXISTENT PANCREATIC EXOCRINE FUNCTION."

http://www.ei-resource.org/articles/chronic-fatigue-syndrome-articles/what-is-me?-what-is-cfs?/

The enzymes that are responsible for breaking down proteins (proteases) are produced in the pancreas, so we would expect exocrine insufficiency to be a common feature of Sjogren's, primary biliary cirrhosis, and CFS.

 

[RustyJ]

I have very red tender eyes all the time and saline drops didnt help, red eyes drops help for a few hours, then i go back to looking like apot smoker, lol, which i dont.

Likewise for me, heaps. I also have dark circles under my eyes. Going to try antibiotic drops again. Don't expect them to work.

 

[heapsreal]

Likewise for me, heaps. I also have dark circles under my eyes. Going to try antibiotic drops again. Don't expect them to work.

Meryl posted a link showing viral infection like ebv etc can cause dry eyes and infections. I have had some success with oral abx doxycycline for my eyes but takes about 2 weeks for them to work and effects stop shortly after stopping it but good for when they flare up. I have also found a common over the counter eye drop which is an antiseptic/antibiotic called bleph 10 here in australia also helpful but nothing has cleared it up completely, just always chasing my tail with it.

cheers!!!

 

[Hell...Hath...No...Fury..]

Bleach for tears

I don't know a huge amount about sjogrens, though i did look into it back at the start of the ME a long time ago. Does sjogrens cause any changes with the actual tear fluid at all?
The reason I ask is during the first couple of years, I could only open my eyes for very short periods of time as they were literally too dry to keep open for more than a few minutes at a time. But the query I have is can sjogrens affect the actual tear fluid? because I always had bleach for tears, every time i cried, the tears would be a bleach like substance that felt like acid and would literally burn the coating of my eyeball and it was excruciating. I was terrified to cry.
The doctor of course had never heard of it, like everything else i mentioned but this symptom was aborted when I started drinking 2 litres of water a day.
I only have eye problems when i'm really ill now and the bleach tears re-appear during this time too but the bleachy thing has always had me intrigued.
I'm sure I read somewhere of killer cells, or some sort of immune fighting cell that excretes a type of bleach like substance to kill pathogens or bacteria and I was wondering if the body became overloaded with these cells, they would also leak from the tear ducts in an overspill. Sorry i'm totally brain fogged so have no idea if this makes sense or not but was wondering if other people have the bleachy tears at all?

 

[Lotus97]

Can Lyme disease infection cause Sjogren's Syndrome? Or does Lyme just mimic the symptoms of Sjogren's?