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Sjogren's syndrome  This thread currently has 1,243 views. Print Print Thread
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Beouemom
Thursday, October 19, 2006, 9:18pm Report to Moderator Report to Moderator

Ee Dan
Posts: 609
Gender: Female
Location: colorado
Anyone want to talk about this topic?  
 
 I went to the doctor yesterday with a sore/dry mouth and his first idea to test for was Sjogrens so he did a blood draw to test for antibodies. (ANA test).
     He did not think I have yeast/candida (no white spots or patches in my mouth but when I do the spit test at homes it shows postive.  
    He gave me a steroid medication for my mouth to calm the inflamation down.  
     The only two visible symptoms I have are dry eyes and mouth.  I have always had dry eyes.  
    I have spent the better part of today reading up on the topic via google searches.
     On this forum I can not get anything in former posts to come up on this topic.  Maybe I am using the search feature wrong.   Maybe they have all fallen off due to not being added to recently.  
    I did find one item in "Ask Dr D"  saying this...

QUESTION: Per this week's NIH meetings on the subject of Sjögren's syndrome, can you comment on the relation of Sjögren's to blood type (beyond its general auto-immune implications for O's) and the ER diet? My type-O father died of it, and his five middle-aged type-O daughters are nervously watchful about things like contact lenses, periodontic disease or numbness in toes. Thanks for your great answers on this board.
ANSWER: Sjögren's syndrome is a chronic disorder of unknown cause characterized by a particular form of dry mouth and dry eyes. This loss of tears and saliva may result in characteristic changes in the eyes (called aqueous tear deficiency or keratoconjunctivitis sicca) and in the mouth with deterioration of the teeth, increased oral infection, difficulty in swallowing, and painful mouth. There are many different causes for dry eyes and dry mouth. When they occur as a result of an "autoimmune" process, the condition is called Sjögren's syndrome, which usually occurs in middle-aged women and has prevalence in about 1 in 500 persons. Patients may also have inflammation of the joints (arthritis), muscles (myositis), nerves (neuropathy), thyroid (thyroiditis), kidneys (nephritis), or other areas of the body. Also, patients may have severe fatigue and disruption of their sleep pattern. Also, the blood of Sjögren's patients may contain antibodies directed against normal cellular substances such as nuclear antigens and immunoglobulins. Therefore, this disease is termed an "autoimmune" disorder to denote the apparent reaction of the immune system against the patient's own tissues

# Fucus (Bladderwrack). One approach to dryness is to help break up the thick, sticky secretions. Agents that contain iodides include 10% saturated solution of potassium iodide (SSKI). Since one of the main problems with Sjögren's is Candida overgrowth, perhaps using Bladderwack would have the additional benefit of providing low levels of iodine, plus some of the anti-Candida properties found in this seaweed.

# Urtica dioca rhizome (Nettle Root). Utica dioca rhizome contains a lectin which can down-regulate the immune system, helping to modulate auto-immunity, plus Urtica dioca has potent anti-candida properties.

# Probiotics. This has had a beneficial response in decreasing oral Candida infections and thus decreasing mouth discomfort.

   Seems to me one who has it will be best off with ERFYT and trying the above 3 suggestions...
     ...but when reading some recent posts about how to get rid of Candida or keep it at bay the issue of having a mercury toxicity was addressed and it was suggested that it may not be a good idea to try to get rid of the Candida before you take care of the mercury toxicity.  I do not know the status of mercury in my system but think it might be worth looking into it as I have a mouth full of fillings and as I said I am testing positve for Candida (with the spit test) at home.  
  What I am wondering is the other medications (and et) prescribe by doctors.  Will they help?  Will they keep it at bay? Do I even consider them if all they are prescibed for is more comfort?  
      So far there is no cure fo this
       I also read the ANA test is not always conclusive.  How many other tests do I go for if the doctor wants to do them?  
      Any and all comments/questions are welcome.    This is all new to me.  



Beouemom sounds like bay way mom and I think Colorado is a great place to live.  

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Beouemom  -  Friday, October 20, 2006, 7:08pm
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Lola
Thursday, October 19, 2006, 9:39pm Report to Moderator Report to Moderator

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Sa Bon Nim
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use the general search button located on the left margin of the home page.
here s what I got.......lots of good reading:
http://www.google.com/custom?q.....itesearch=dadamo.com


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
DNA mt/Haplo H; Y-chrom/J2(M172);ISTJ
The harder you are on yourself, the easier life will be on you!
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Beouemom
Thursday, October 19, 2006, 9:59pm Report to Moderator Report to Moderator

Ee Dan
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Thanks Lola;  I don't think I tried that search place.  


Beouemom sounds like bay way mom and I think Colorado is a great place to live.  
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Lola
Thursday, October 19, 2006, 11:27pm Report to Moderator Report to Moderator

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Sa Bon Nim
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it s a great tool!


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
DNA mt/Haplo H; Y-chrom/J2(M172);ISTJ
The harder you are on yourself, the easier life will be on you!
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Beouemom
Sunday, October 22, 2006, 11:00pm Report to Moderator Report to Moderator

Ee Dan
Posts: 609
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Location: colorado
Which of the specialty books do you all think would help for someone with Sjogrens?  

              Arthritis?  Fatigue?  


Beouemom sounds like bay way mom and I think Colorado is a great place to live.  
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resting
Monday, October 23, 2006, 12:09am Report to Moderator Report to Moderator

probable non-sec
Sam Dan
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another approach at http://www.hnmrc.net/pd1964528474.html?defaultVariants={EOL}&categoryId=17

John


“The object of life is not to be on the side of the majority but to escape finding oneself in the ranks of the insane.” – Marcus Aurelius

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Lola
Monday, October 23, 2006, 12:51am Report to Moderator Report to Moderator

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Sa Bon Nim
Admin & Columnist
Posts: 51,064
Gender: Female
Location: ''eternal spring'' Cuernavaca - Mex.
Age: 57
yeah, arthritis might be right..........


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
DNA mt/Haplo H; Y-chrom/J2(M172);ISTJ
The harder you are on yourself, the easier life will be on you!
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Don
Monday, October 23, 2006, 5:47pm Report to Moderator Report to Moderator

Rh-, MN
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I sent this to Beouemom last week, but decided maybe others would find it interesting too.

Check out the bottom section of this list.

Here is a list of symptoms that can be caused by mercury toxicity, and which are particularly associated with it. (Of course, there are other causes of these symptoms as well).

Other Diseases / Syndromes Associated with Mercury Toxicity

Autoimmune disease (e.g., Sjogren's syndrome, Graves disease, Myasthenia Gravis, etc.)


FIFHI; ISTP;
Started BTD 3/2002, with 2 O- secretor teenage sons
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Beouemom
Monday, October 23, 2006, 8:48pm Report to Moderator Report to Moderator

Ee Dan
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Sure have been doing some interesting reading today (and last week).  

  The mercury toxicity, the candida and being a nonnie all tie in together.    Thanks for the links.
  Does anyone know anyone with Sjogrens?  Do they ERFTT?  Does it ever get any better?  What medications if any do they take for it?  


Beouemom sounds like bay way mom and I think Colorado is a great place to live.  
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Maria Giovanna
Monday, October 23, 2006, 9:49pm Report to Moderator Report to Moderator

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Kyosha Nim
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Hi beuemom,
I have a friend with Sjogren and she has been helped a lot by stinging nettle root caps, fucus caps, oil pulling search in this Forum) and high compliance. Quercetin, Boswellia (frankincense) should help too.
Best wishes
Maria Giovanna


INTJ Italy celiac��

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Beouemom  -  Monday, October 23, 2006, 9:52pm
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jayney-O
Monday, October 23, 2006, 10:43pm Report to Moderator Report to Moderator
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I have a friend with it who is helped by flax oil...she is not btding...
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Beouemom
Tuesday, October 24, 2006, 6:59pm Report to Moderator Report to Moderator

Ee Dan
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Maria Giovanna and Jayney-O

 How did your friends find out they had Sjogrens?  What meds (from doctors) do they take if any?  Do they have any other auto immune illnesses?  What age range are they? Do you know if anyone else in their family has it?  How long have they had it?  Do they have reason to think mercury toxicity has/had anything to do with them getting it?  Do you know if they are non secretors?  


Beouemom sounds like bay way mom and I think Colorado is a great place to live.  
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Maria Giovanna
Wednesday, October 25, 2006, 10:23pm Report to Moderator Report to Moderator

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Kyosha Nim
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Hi beuemom,
my friend was diagnosed by a doc. and proposed different therapies, but choose to do oil pulling, fucus and stinging nettle root (not leaves) caps, with rather good results since many years. If your problems are harder on eyes, artificial teares or lubricant hydrating eye drop should help.
besty wishes and sorry for my delayed answer !
Maria Giovanna


INTJ Italy celiac��
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jayney-O
Thursday, October 26, 2006, 2:14am Report to Moderator Report to Moderator
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My friend got help from a chiropractor who has a lot of nutritional knowledge.....she has had mostly eye problems...she wears a type of sunglasses a lot that are a bit like goggles, keeping out all dust....and she doesn't btd...and her problems started in her 40's....her case flares up and then becomes nearly normal for varied periods.
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Melissa_J
Thursday, October 26, 2006, 2:25am Report to Moderator Report to Moderator

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Once you know more, I'd ask your doctor about your options.  If it is affecting other organs, he/she may want you to take the meds...if it's still rather mild, only affecting your mouth and eyes, then you should most likely see good results with the suggestions above and keep it from getting to a point that it needs other meds.  Do take care of your mouth and eyes, and take special care of your teeth.  You can discuss with an opthamologist the option of punctile plugs to keep the moisture in, if it becomes necessary.

I get dry eyes when I eat avoids, mainly corn.  


Type O+ blogger, secretor afterall. Gluten intolerant. With two gluten intolerant sons:  A+ Secretor 10 yo (also fructose intolerant and slightly egg allergic), and  O- 7yo.

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Beouemom
Thursday, October 26, 2006, 12:24pm Report to Moderator Report to Moderator

Ee Dan
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Thanks for the info  
    I have to wait till next week until I go back to the doctor to find out my ANA blood test results.  I am not sure if he will want to run any other tests or not.
      I am just trying to gather info from others.  My research tells me it is mostly women and nonnies who get it.   Candida factors in there too.  MoDon has pointed out it has in some cases been related to/with mercury toxicity.  I fit into all those catagories.  
     I would not have gone to the doctor with my dry eyes or dry mouth symptoms if my mouth/gums had not gotten so sore.  I work in a day care situation and was not sure if I picked something up there or if I was going to pass anything on to the ones I care for.
 If anyone has anymore info to pass on that would be great.  Thanks.    


Beouemom sounds like bay way mom and I think Colorado is a great place to live.  
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Melissa_J
Thursday, October 26, 2006, 5:18pm Report to Moderator Report to Moderator

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I don't know if there are natural remedies for dry mouth, but there are some over the counter things that help, like Biotene toothpaste and mouthwash.  Hopefully there's a natural version of it, or even just a mouth rinse recipe that may help?  If I find anything I'll let you know.  Maybe rinsing with green tea and glycerine?  Rinsing with deflect may also help your mouth's defenses (though I can promise you it won't taste good! Try combining it with a peppermint or anise tea perhaps.)  


Type O+ blogger, secretor afterall. Gluten intolerant. With two gluten intolerant sons:  A+ Secretor 10 yo (also fructose intolerant and slightly egg allergic), and  O- 7yo.
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Beouemom
Friday, October 27, 2006, 2:33pm Report to Moderator Report to Moderator

Ee Dan
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    Thanks for the info Melissa.
    When I looked up Biotene tooth paste it said it had floride in it.  I try to get toothpaste with out floride in it.  Looks like one could look at it as the lesser of two evils.  
    The sore mouth I went to the doctor for is gone. Now it is just the regular dry mouth.  It is not that troublesome.  My mouth seems driest after I have a drink of water.  Feels as if the water I just swallowed zaps any moisture from my mouth.   Wierd.
       This week I went to the doctor with what I thought was pink eye (in one eye)  I work in a day care sitution and did not want to pass it on to the kids.   The doctor said it was allergies.  (Maybe it is just sjogrens.)  I am now on Allegra-D and Singulair for 12 days. Plus some eye drops with Tobramycin and Dexamethasone in it.  
 I may try the tea idea.   Is deflect a liquid?  Does it come in capsule form?  


Beouemom sounds like bay way mom and I think Colorado is a great place to live.  
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Don
Friday, October 27, 2006, 5:13pm Report to Moderator Report to Moderator

Rh-, MN
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Deflect comes in capsule form.


FIFHI; ISTP;
Started BTD 3/2002, with 2 O- secretor teenage sons
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Beouemom
Friday, October 27, 2006, 5:15pm Report to Moderator Report to Moderator

Ee Dan
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That's what I thought


Beouemom sounds like bay way mom and I think Colorado is a great place to live.  
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Melissa_J
Friday, October 27, 2006, 8:05pm Report to Moderator Report to Moderator

Hunter
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Yes, I just break open the capsule and try to dissolve it in some tea.  It still tastes a bit like a tide pool...but it's bearable and should carry away some of the opportunistic bacteria and such.  

A little sea salt mixed in might help with the dryness too?  I'm just thinking outloud, but comparing putting water in your eyes to putting saline, the saline isn't drying like plain water, so maybe the same would hold true for the mouth (spitting it out of course, to avoid too much salt intake).  I'm still trying to think of something that might form a barrier, or coating, to protect and sooth your mouth a bit...avocados?  olive oil?  glycerine?  Hmmm.  I've only ever tried over the counter stuff, that, as you found, has avoids all over the place.

I have seen a kids toothpaste from the HFS that has the enzymes in it, like biotene.  Let me see...Fluoride Free First Teeth Baby Toothpaste with Milk Enzymes... that might work.  It has some avoids, including aloe vera, but as far as toothpaste goes...


Type O+ blogger, secretor afterall. Gluten intolerant. With two gluten intolerant sons:  A+ Secretor 10 yo (also fructose intolerant and slightly egg allergic), and  O- 7yo.

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Beouemom  -  Friday, October 27, 2006, 8:07pm
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Beouemom
Friday, November 3, 2006, 7:35pm Report to Moderator Report to Moderator

Ee Dan
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OK time for an update.  
    The ANA test ( antinuclear antibiodies) did not show anything to lead the doctor to think I had sjogrens.  He tested my thyroid and it was 0.900 with the normal range being 0.350 to 5.5000.
    The only thing he could guess it might be was a viral attack to my mouth.  No meds for that.  
   I am to keep drinking plenty of water and come back in 6 months.  I was kind of hoping the test would show something but didn't.  Not that I would want to have sjogrens.
     He did not want to run any other tests at this time.  
       I will look into the Biotene mouthwash and that kids toothpaste.  I have not tried the deflect.  Maybe I will get some in my next NAP order.  
 Thanks to those who chimed in with their comments.  I still have the dry mouth and eyes but my mouth is not sore anymore.  


Beouemom sounds like bay way mom and I think Colorado is a great place to live.  
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