Author Topic: Has someone heard of a similar case? Biopsy doesn't lie, right?...  (Read 1135 times)

grlds95

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Hello guys. I have been gaining courage to introduce myself here. I am a 22 yo male from Portugal. I am writting here hoping to understand this disease better and to hear your opinions in ways to manage the symptoms. (i am sorry for the long post but i need help)

Well... Everything was perfect 7 months ago. My medical history is pretty "clean" and i think i do not have genetic predesposition (i still have 4 healty grandparents and my 2 parents), so i think i could (and maybe should) be a case study so science could get a better understanding of these disease, because i just did certain few things in the past, and being a male, my short list of triggers could be interesting to study:

- i took roaccutane for acne 2 times, first when i was about 16 and then when i was 18. I think it was one of the lower doses (20mg) and took it about 7/8 months each time
- i had 2 or 3 antibiotic courses per year in the last 4/5 years due to Pharyngitis i usually get 2 or 3 times a year
- i reacted badly to one of those antibiotics and became intolerant to lactose.
- i had a small surgery (arthroscopy) to repair the labrum in my shoulder, with regional and local anesthesia.

1 week after surgery my problems started... It all started with a sort of nerve pain in my right eye that nobody could explain. The 1st month the problem was only in my right eye and my eyes teared a lot (so i wasn't suspecting dry eye at that time). In the 2nd month the burning started in the left eye and then it was on both eyes. Since my surgery i could never watch TV, play games, work or just relax doing nothing, without burning and pain on my eyes.

The thing is 3 months after my eyes problems started, i develop a kind of white coating on tongue (sometimes looks like thrush but i guess it is not because i can't remove it) which i think is dry tonge - my mouth is moist most of time but the problem with my tongue makes it difficult to speak normally sometimes.

I had never been to a hospital before my shoulder stuff but...my hospital/doctors madness had began. I have now been to 10 ophtamologists and 2 rheumatologists. One ophtamologist made me the Schirmer test and he said it was 3mm/5min and advised me to a rheumatologist. Well... I then did a huge pile of blood testing and it ALL came back normal (no antibodies, perfect Sediment. rate, perfect white blood cells, etc etc). Despite the entire world telling me it was not sjogren's 100% (because i am male and young) i went for the lip biopsy. Yes because doctors can tell that is it not some disease, but they can't get rid of my dry burning eyes and of my odd dry tongue.

Well...Biopsy revealed inflitration of lymphotics - 1 focus - and the Dr. who did it wrote "indicates possible sjogren's syndrome". The joke here is that i then went to the best rheumy here in Portugal and even this data he says he thinks i don't have sjogren and prescribed pilocarpine. He said that the biopsy is important and taken into his consideration but it could be explained by something that not sjogren's lol... This is ridiculous.

My eyes burn all day every day and i just stopped doing the things i loved. (It is so hard to explain the pain to others, isn't it?). When they are not burning they just don't feel good with always some pain in them. My eyes are not sand-paper dry but i feel an overall lack of moisture (which would be ok if they didn't burn) - needless to say i tried all OTC drops out there and it just doesn't help... I'm on cyclosporin 1 month and 1 week now and not helping.

I just wanted to ask... they say this disease (and other AI) is slowly and progressive, so... it is "normal" what is happening to me? It can just be sjogren's right? Have you heard of similar cases? The only problem i had for some time before this is intestinal (i go to bathroom seldom) which started to bother me after the reaction to the antibiotic but it bothered me 10 out of 100 and it was ok.

I just started working 1 year now and it has been so difficult (i didn't know this disease or even dry eyes existed so i can't blame others...) but who is going to look at me at 22 and think that i have some problem? Or understand me? I mostly look normal, my eyes just become reddish sometimes. This is so stupid and the worst is i lost all hope because i feel Science is so far from understanding Sjogren's... they can't even tell what causes it, so how they are going to solve it? They are not. And my life will be crap like this.

Looking back i feel i didn't need to take or do any of the things i did medical-wise, so this all regret feeling consumes me sometimes... But come on.. there are people who probably take 20 antibiotics per year, took roacutane and did 5+ surgeries and are fine so... We have something different i guess,and it just s*cks.

Please tell me your advices and how you helped your dry eye, and if you could eventually manage it and feel it quite normal...

Andre
« Last Edit: August 10, 2017, 06:45:37 AM by grlds95 »

Fortitude

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #1 on: August 10, 2017, 06:30:09 AM »
Hi. So sorry for all that you are going through.  You already know you are not the norm for Sjogren's just being male and add to that being young. I think your should consider looking for another rheumatologist even though you said you saw the best one.  It is a very misunderstood disease, even among rheumatologists.  What helps me with dry, burning eyes is a warm compress every day or several times a day if they are very bad.  Just take a soft wash cloth and soak it in warm water, wring it out and with your eyes closed, place it over them until the cloth becomes cold.  The thing about Sjogren's too is that it flares and your extreme eye dryness and pain may get better by itself if you are having a flare.  Take a deep breath and keep looking for answers until you find them.  Best of luck. 

quietdynamics

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #2 on: August 10, 2017, 10:53:43 AM »
"Biopsy revealed inflitration of lymphotics - 1 focus - and the Dr. who did it wrote "indicates possible sjogren's syndrome". .. best rheumy here in Portugal and even this data he says he thinks i don't have sjogren and prescribed pilocarpine. He said that the biopsy is important and taken into his consideration but it could be explained by something that not sjogren's "

At that point I would have persisted at the appointment and asked the Dr. what other possible explainations and what course of investigation he was going to take, either his doing further tests or referring another specialist.  However, understand please that this assertive stance is what we learn after years and many appointments with specialist when we have left with no answers or course of relief. It is a 'learning curve'.  I see in reading your post that you are persistent.

The Rheum has the biopsy result and has not taken it lightly. It is for him, it seems, early when there are not antibodies present.

 "The lip biopsy  has to be interpreted by a pathologist with special training. The characteristic biopsy finding in Sjögren’s syndrome is “focal lymphocytic sialoadenitis” and is recognized by the presence of one or more tight clumps of lymphocytes (more than 50 in number) adjacent to normal gland tissue and surrounding a duct in a 4 square mm area of gland tissue. These clumps of lymphocytes are called foci and their approximate density in the tissue is called a “focus score”. The lip biopsy may reveal other types of glandular inflammation and point to alternative diagnoses, such as sarcoidosis, amyloidosis or lymphoma."
https://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/labial-gland-lip-biopsy/
https://librepathology.org/wiki/Sj%C3%B6gren_syndrome

i had 2 or 3 antibiotic courses per year in the last 4/5 years due to Pharyngitis i usually get 2 or 3 times a year
i develop a kind of white coating on tongue
I am really curious about this as the Pharyngistis is recurring, multiple doses of anitbiotics per year x's years and white tongue? This is not normal. Is there something going on at the gut level? Or do would it be advisable to see an ENT to see if tongue/throat is dry and allowing bacteria, etc to cause these conditions. Are general doctors just writing scripts for antibiotics without further investigation?

I recently attended a seminar re: Dry Eyes and Disease:Care.
Of interest is that they are seeing more patients coming in who are not aware that due to current lifestyle... we blink far less when reading, TV, computer use and so tear film evaporates = dry eyes. Lowering or tilting head back so our lids cover larger portion of eyes helps lessen evaporation and training patients to blink more.  Go figure.
Higher viscosity drops help, and I find 'relief' using eye gel at bedtime.. very soothing (during pollen season I use a bit in daytime as well.. and gardening.. not enough to blur vision)
Rheum increased pilocarpine and added that it has been noted in studies to help with dry eyes.

You have not done 'too many tests' as you pursue/advocate for your own well being. And the tests set a reference point for any future tests.

AI disease are relatively young in the scheme of medicine. The research is evolving. And it really does grow as many 'eureka' stepping stone in one disease, benefit another. The growth in data banks is insanely vast, no longer the image of the white coated Dr. in the research lab.




« Last Edit: August 10, 2017, 01:58:10 PM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

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Joe S.

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #3 on: August 10, 2017, 01:19:49 PM »
Welcome to the forum. On average it takes 7 years to diagnose this disease as it is a diagnosis of elimination. I was very frustrated when I went to the Rheumatologist so I asked him, "Dry eyes, nose, mouth, skin and bum, what do you think it is?"

His answer was, "Sjogren's / S.I.C.C.A.". I have had a bad reaction to most of the common drugs and so I use supplements.

My symptoms go back to age 5, so I thought everyone had issues with dryness. AI diseases runs in my family on my dads side. At family reunions we speak of non-drying soaps and methods of dealing with dryness issues.

Do not be discouraged. AI diseases have been around for over 100 years. They are hard for Medical doctors to deal with as they do not have an idea of how these diseases work. Lister Institute had a theory that I think is correct. But since it is a theory from Lister, Medical Doctors do not want to look at it.

Check our signatures to find out what some of us are taking. Before trying anything someone else is taking, check for side effects, drug interactions, and counter indications.

Good luck in managing your health challenges. :) Sjogrens :)
 
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Sharon

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #4 on: August 10, 2017, 05:11:48 PM »
Hi, welcome to the group  :)
I've heard of some cases where antibiotics triggered SJS.
Which ones did you take?

I also get the burning eyes and have found much of it is from allergic reactions
due to not having enough moisture to protect the eye from irritants.
If this is your case then look for eye drops which contain antihistamines.
As far as Restasis- you need to be on them a few months to tell if they're helping or not.

For your dry tongue- Ubiquinol helped me alot with that.

Have you been tested for igg4 related diseases? They usually try to rule that out during the diagnosis process when men show SJS symptoms.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

alwaysimproving

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #5 on: August 11, 2017, 03:43:27 AM »
You sound similar to me.
I'm a 22 year old male. I had a sudden onset of symptoms over a year ago. At first it was dry mouth only, then it became dry mouth and dry eyes.

All of my bloodwork has been negative. I even took the early sjogrens syndrome panel. I haven't taken the lip biopsy as I don't see the point, it wouldn't change my treatment.

At first I was very hopeless and thought my life was over. It is a hard adjustment to make when we are young and do not expect to have to deal with the reality of chronic disease. Words like lifelong and incurable are scary and can make us feel like we should give up, now.

My perspective has changed a lot since then, and I began to take some proactive measures that I think have made a big difference. Instead of getting too deep into my story I'm going to give you some points from what I've learned :

  • Diet makes a difference. Get on the autoimmune Parlodel diet and stick to it. I have begun to notice that my flares for into diet.
  • Look up Helminthic Therapy and join the Facebook group
  • There are many researchers working on inflammatory disorders so maintain hope
  • read epictetus's enchiridion. It has become my daily philosophy and allows me to cope.

grlds95

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #6 on: August 11, 2017, 06:49:43 AM »
Hi guys. Thanks for your time and answers, it means a lot.

Fortitude - thank you for your words and advice for the eyes. will try it

quietdynamics
-

At that point I would have persisted at the appointment and asked the Dr. what other possible explainations and what course of investigation he was going to take, either his doing further tests or referring another specialist. - Yes i persisted and did ask him. But, as you may no, doctors just don't say "i don't know" and they sometimes seem to avoid questions - but he told me that our body produces other kinds of antibodies that we can not test and that could be the reason for the biopsy result. lol

The Rheum has the biopsy result and has not taken it lightly. It is for him, it seems, early when there are not antibodies present. - Yes, i somewhat feel that he is "afraid" to diagnose such rare case, and because my symptoms came out of nowhere...or he really believes i don't have, which i doubt a lot.

I am really curious about this as the Pharyngistis is recurring, multiple doses of anitbiotics per year x's years and white tongue? This is not normal. Is there something going on at the gut level? Or do would it be advisable to see an ENT to see if tongue/throat is dry and allowing bacteria, etc to cause these conditions. Are general doctors just writing scripts for antibiotics without further investigation?
- Well. Talking about this drives me desperate and crazy. Because at that time, 2 or 3 years ago, i had no clue about antibiotics contra-indications, and when i had some pharyngistis a sh*t doctor would exam me and just observe the redness on my pharyngis and give antibiotics - they had no clue if it was viral or bacterian - and just prescribe some sh*t! how is this even promised and allowed? i could be a doctor too! So, yes, they  just write scripts for antibiotics without further investigation! And then a strong antibiotic (with no reason at all to give me that...) - Avelox, may just have ended my life comfort. At the gut level - i don't evacuate like a normal person does,i guess. For instants, now - i didn't evacuate for the last 3 days. And this is quite regular to happen. For me it is good if i can evacuate every 2 days...- what do you think i can do about that? any suggestions?

Of interest is that they are seeing more patients coming in who are not aware that due to current lifestyle... we blink far less when reading, TV, computer use and so tear film evaporates = dry eyes. Lowering or tilting head back so our lids cover larger portion of eyes helps lessen evaporation and training patients to blink more.  Go figure. - Yes, i am aware of that. The tilting head back or have the eyes less open i am aware of because i notice when i open the eyes wider, it burns more. Having that said, i don't have evaporative dry eye (my TBUT is > 15s), my dry eye is aqueous deficient and sometimes it even burns with eyes closed.

Rheum increased pilocarpine and added that it has been noted in studies to help with dry eyes. - i am aware of this too. wiil try to start my soon.
 

AI disease are relatively young in the scheme of medicine. The research is evolving. And it really does grow as many 'eureka' stepping stone in one disease, benefit another. The growth in data banks is insanely vast, no longer the image of the white coated Dr. in the research lab. - let's hope a lot of eureka's start to happen in the next few years - but my hope is minimal - i feel science is far far away from understanding. The lack of communication and the lack of patiens-following are big issues too

[/quote]

Joe S. -

His answer was, "Sjogren's / S.I.C.C.A.". I have had a bad reaction to most of the common drugs and so I use supplements. - and what is your discomfort with just that treatment (out of 100?). I try to take omegas every day (hyabak caps) and i also take flaxseed. also tried 3 or 4 natural supplements the last 2 months.

My symptoms go back to age 5, so I thought everyone had issues with dryness. AI diseases runs in my family on my dads side. - Obviously that s*ucks too... in my case i don't feel i am genetically predisposed so... i think modern medicine did this to me.

Do not be discouraged. AI diseases have been around for over 100 years. Lister Institute had a theory that I think is correct. - well, that's one of the things which discourages me, i feel that in that 100 years very few has been discovered.
 
[/quote]
« Last Edit: August 11, 2017, 06:51:35 AM by grlds95 »

grlds95

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #7 on: August 11, 2017, 06:50:00 AM »
(continuation)

Sharon -

I've heard of some cases where antibiotics triggered SJS.
Which ones did you take?
- well... the bad one was Avelox - i vomited, had diarrhea and became intolerant to lactose... i feel so much regret; i didn't need to take such strong medicine. And i was like 19.

I also get the burning eyes and have found much of it is from allergic reactions due to not having enough moisture to protect the eye from irritants. - i had allergy to dust which sometimes triggered my pharyngitis and when the sj?gren symptoms started, my allergies stopped...and i have less cold. it is so strange. my nose used to run sometimes and now it stopped. i will try Zaditen soon if i don't improve...


For your dry tongue- Ubiquinol helped me alot with that.
- is it a natural supplement? did you have a kind of white "thrushy" tongue? is there any way i can show you my tongue and hear your opinion? :)

Have you been tested for igg4 related diseases? They usually try to rule that out during the diagnosis process when men show SJS symptoms. - I don't know. i did tests to about 60 elements and i think i don't have that kind of diseases. My symptoms are dry burning eyes and dry white-coated tongue...

[/quote]

alwaysimproving -

You sound similar to me.
I'm a 22 year old male. I had a sudden onset of symptoms over a year ago. At first it was dry mouth only, then it became dry mouth and dry eyes.
- i would like to hear all you story  :) i think our odds are like 0.005% so it would be interesting to hear from you. is there any link to some post where you told your story?

All of my bloodwork has been negative. I even took the early sjogrens syndrome panel. I haven't taken the lip biopsy as I don't see the point, it wouldn't change my treatment.
- this is saddly very true.

At first I was very hopeless and thought my life was over. It is a hard adjustment to make when we are young and do not expect to have to deal with the reality of chronic disease. Words like lifelong and incurable are scary and can make us feel like we should give up, now. - this was me a month ago. i am now a bit stronger mentally. but i still think life will be a misery like this. and phisically i am still feeling very bad.

[/quote]

Just let me add something i forgot:

i also got candidiasis from my girlfriend like in last year's september. i think this was a warning that my good flora was gone, but at that time i didn't know... but my genital organ never become the same. It is like 85/100 but sometimes is drier than i wished... other possible trigger? bah

Thanks guys  :) :)
« Last Edit: August 11, 2017, 06:51:59 AM by grlds95 »

quietdynamics

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #8 on: August 11, 2017, 09:58:47 AM »

Here is information for an Early Sjogrens Test:
"The success is the achievement of an early test, pre the occurrence of antibodies Ro and/or La. It is not even dependent on ANA as a screening tool."
http://sjogrensworld.org/forums/index.php?topic=22714.msg242036#msg242036
2016 Three novel antibodies may lead to the early diagnosis of Sjogren’s syndrome  (The  Penn Dry Eye & Ocular Surface Center, Scheie Eye Institute, presented the seminar I attended.)
http://ophthalmologytimes.modernmedicine.com/ophthalmologytimes/news/novel-sjogren-s-syndrome-antibodies-dry-eye-patients

If the test is not available in Portugal, you could possibly inquire as to near countries, write to diagnostic manufacturer.
(Many us drive hours for treatment)
The problem, a very real one, is that should test prove positive for biomarkers and antibodies are not present a Dr. is likely to take a 'wait and see' position with monitoring. Perhaps treat some of the symptoms= drugs (and you are young). You could then use Google Scholar and search "Sjogren's + Portugal" to see who and where research is being done in your country. Send letters of inquiry to those professionals.
Should you be able to avail yourself of test.. and it is negative.
An examination now or after by an Immunologist may be advisable.

Gastro/bowel issues: Gastroenterologist informed me that adding more water + fiber supplement (powders are mostly Psyllium, so generic will do) helps those with Diarrhea or constipation.  Balances to a more normalized gut level. * This was the advice even though I explained I consume more a Mediterranean style diet for 45yrs. I have problems as a symptom of flares.
Intuitively at that time, all those yrs. ago I also stopped milk and sugars and fried foods, processed products.. actually it was easy to do.

Candida/Thrush:
Take the probiotics between antibiotic doses (remember that antibiotics can kill these good bacteria)
"Oral candidiasis, or thrush, is a common problem in dry mouth patients. Thrush can cause oral burning and pain. The appearance of thrush in a dry mouth patient often is atypical and appears as red and irritated instead of the typical white cottage-cheesy." https://www.sjogrens.org/files/brochures/Thrush.pdf   (Being aware of pre-white coating is a benefit in control)
(Medical scan showed damage to glands.. but, even prior when I brush teeth I also use brush to massage and clear any debris from inner cheeks, tongue, lips. In morning I use peroxide/water rise. Even with that I have oral issues. But, hopefully less without the extra bit of care.)

Just some suggestions.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

jkcc2323

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #9 on: August 11, 2017, 10:04:06 AM »
(continuation)

Sharon -

I've heard of some cases where antibiotics triggered SJS.
Which ones did you take?
- well... the bad one was Avelox - i vomited, had diarrhea and became intolerant to lactose... i feel so much regret; i didn't need to take such strong medicine. And i was like 19.

I also get the burning eyes and have found much of it is from allergic reactions due to not having enough moisture to protect the eye from irritants. - i had allergy to dust which sometimes triggered my pharyngitis and when the sj?gren symptoms started, my allergies stopped...and i have less cold. it is so strange. my nose used to run sometimes and now it stopped. i will try Zaditen soon if i don't improve...


For your dry tongue- Ubiquinol helped me alot with that.
- is it a natural supplement? did you have a kind of white "thrushy" tongue? is there any way i can show you my tongue and hear your opinion? :)

Have you been tested for igg4 related diseases? They usually try to rule that out during the diagnosis process when men show SJS symptoms. - I don't know. i did tests to about 60 elements and i think i don't have that kind of diseases. My symptoms are dry burning eyes and dry white-coated tongue...


alwaysimproving -

You sound similar to me.
I'm a 22 year old male. I had a sudden onset of symptoms over a year ago. At first it was dry mouth only, then it became dry mouth and dry eyes.
- i would like to hear all you story  :) i think our odds are like 0.005% so it would be interesting to hear from you. is there any link to some post where you told your story?

All of my bloodwork has been negative. I even took the early sjogrens syndrome panel. I haven't taken the lip biopsy as I don't see the point, it wouldn't change my treatment.
- this is saddly very true.

At first I was very hopeless and thought my life was over. It is a hard adjustment to make when we are young and do not expect to have to deal with the reality of chronic disease. Words like lifelong and incurable are scary and can make us feel like we should give up, now. - this was me a month ago. i am now a bit stronger mentally. but i still think life will be a misery like this. and phisically i am still feeling very bad.

[/quote]

Just let me add something i forgot:

i also got candidiasis from my girlfriend like in last year's september. i think this was a warning that my good flora was gone, but at that time i didn't know... but my genital organ never become the same. It is like 85/100 but sometimes is drier than i wished... other possible trigger? bah

Thanks guys  :) :)
[/quote]

I've been reading a few posts today and want to jump in.

Ubiquinol is the active form of CoQ10. It's better absorbed than regular CoQ10. However, it's best to choose a water and fat-soluble form of either CoQ10 or ubiquinol for even better absorption. CoQ10 is an antioxidant that our bodies make and it is used to help our cells produce energy. It's mostly commonly known for it's heart benefits, but there is research on CoQ10 and gum disease and oral health. I take 100mg of water and fat-soluble CoQ10 per day.

For those who mentioned GI issues, the FODMAP diet has done wonders for my IBS-like symptoms. Just something to consider. A dietitian can help.

Sharon

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #10 on: August 12, 2017, 02:29:24 PM »
Yes, I had the thrush as well as was given candida meds for it which I couldn't tolerate.
When the Ubiquinol kicked in the thrush went away.
You can upload a picture of your tongue to a site and I can have a look, though thrush is usually very obvious.
You should google IGg4 diseases and see if anything fits. Dry eyes and mouth are a prominent symptom of IGg4 diease usually before anything else appears. It is difficult to diagnose it and 50% of the time doesn't show up in blood tests. Biopsy is more diagnostic of it. It usually has a quick response to high dose Prednisone.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

snoweye

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #11 on: August 13, 2017, 09:29:25 AM »
Hi Andre,
Welcome. My middle name is also Andre and I am half Portuguese. What part of Portugal are you from?

I am another young male (well now 32 so relatively young) and like you all my blood tests so far are normal. Based on people I have talked to, it seems to me that the majority of young men with SS seem to be seronegative. However this is just my experience so not statistically valid.

Immunology is very complicated, but as far as I understand it the ANA blood test only checks for about 6 different antibodies and it may well be a different auto antibody that is causing the problem. For example recent research has implicated the anti-M3R auto-antibody in Sjogren's Syndrome and this is something that is not even currently tested for.

So far I have been reluctant to have the lip biopsy because it does not seem to conclusive (the result is subject to interpretation) and the result does not change the treatment which is Plaquenil. I am not very keen to even go on this drug because it doesn't help everybody, doesn't seem to help dryness and has side effects.

It seems many diseases start in the digestive system as a result of imbalanced gut flora. In your case caused by the antibiotics. I recommend having a comprehensive stool test and using probiotics and anti-bacterials to build up a healthy micro biome. Apart from reducing AI symptoms, this may also have the effect of improving your constipation. The stool test that I used before was done by a lab called Doctors Data.

Since my SS symptoms start my constipation became very severe. However recently I have made huge improvements by eating raw sauerkraut, drinking regular ginger tea and adding 1000mg of Vitamin C per day in supplement form. I did all these things at the same time so not sure what helped however I now go twice a day most days. I was also taking magnesium, however my stool was actually too loose even with a small dose of magnesium so I stopped that. There is a magnesium supplement called Natural Calm which I think will really help you. Start slow though, otherwise you might have an extreme opposite effect!

Like alwaysimproving, I also thought that my life was over when I suddenly developed SS. I became very depressed and only recently am I trying to fight this disease. It really sucks for everybody, but in one way we are lucky being young and living in 2017 because progress in AI research is being made constantly. Every month there seems to be some kind of breakthrough.

Don't give up hope and take care.

Snoweye









grlds95

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #12 on: August 18, 2017, 03:50:54 AM »
Hello guys.

Thanks quietdynamics, jkcc2323 and Sharon for the suggestions. I'm already doing 200mg ubiquinol/day.

Hi snoweye, i'm from Lisbon.

I do still think my life is over, yes. I have no quality of life now. I don't have fun anymore. I don't smile anymore. My head feels empty. Treatment is BS and we are left to try 100+ supplements, 100+ drops, 100+ foods etc.

I always had a quiet healthy diet (eating fruish, fish, etc) so... i don't know.

I just don't find the reasons to be such a rare case.

My heart breaks when i see women between 40-60 complaining about this. If they can't handle it nicely, how is a 22 yo male suppose to...? I don't have nothing yet. I was on the process of building life... We only have one life and now i'll have to live with this disease (knowing that probably it will get worse...). I'm going to lose the best years of my life due to this (at least).

We all ask "why me?" right, i guess i'm just more.

Are there more young people living with this out there in the forum? : (

Have a nice weekend guys,
Andre

Cheryl

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #13 on: August 18, 2017, 06:59:38 PM »
Andre,
I'm not young, but I have had symptoms since I was in my 20's.  I can assure you that your life is not over.  You will find ways to help with dryness issues.

I hope the cyclosporin drops help your eyes.  It began helping mine after just a few weeks.  You need to find a good over the counter eye drop to use throughout the day (I use Systane Ultra) in addition to using the cyclosporin drops.  Keeping your eyes moist will help a lot.  As was mentioned by someone else, overnight gels are available without a prescription. 

There is also the possibility of having your eye ducts plugged or permanently sealed to retain moisture in your eyes.  (Your eye doctor may suggest this if your eyes are extremely dry.)

 When you are out in windy areas, wear sunglasses that shield your eyes from the wind.  Protection from the sun's glare may also help the burning.  Get sufficient sleep. 

I have addressed the eye issue because it has been a major issue for me.  Best wishes in finding the help you need.  Try not to be discouraged.

Cheryl
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jazzlover

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Re: Has someone heard of a similar case? Biopsy doesn't lie, right?...
« Reply #14 on: August 18, 2017, 09:57:49 PM »
Exactly what I suspected:

AVELOX .. a fluoroquinolone .. They can wreak havoc on our bodies. Make sure you never take another one because you are very likely not a candidate for that line of antibiotics.

Other drugs to avoid (fluoroquinolones) .. Cipro, Levaquin, and Factive.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease