Autoimmune Diseases - Multiple ! Sjogrens Syndrome Isaacs Syndrome

[asiachloe]

Thank you for sharing your story. I am a nursing student in the U.S. & this story was very helpful.

[lovelyelefant]

Hi I am a 33 year old woman who has been sick with autoimmune since I was 9. I do not know my genitic marker because my docs have yet to do those test. I have sjogren's, LPUS, and fibromyalga. So far anyway!! I am having a problem with my thiroid but the docs say not to worry about it!! I am tired all the time!! All that we can do is get the word out!! And I am trying!! I had my doc tell me the other day that autoimmune is mind over matter!! I would like to see them try living with this!!!

[quasarhi]

@lovelyelefant Thanks for your reply..Yes living with it is the only way to truly appreciate how tough it is..!

There are Docs that also have Autoimmune Disease..sometimes in Research..Im sure they will be very motiviated to push the answers along...but for now until the answers come..we have to make the best of it

Hope your health settles down for the better ...have a good xmas 2011

[brennosation]

hi i'm 47 male i am australian i have just been told i have sicca syndrome after having tests done ,its been a long frustrating time, i really don't understand auto immune ,i have really only noticed the symptons for month, but the doc said you only vnotice after things get out of your comfort zone,and after watching your vid i have had stomach issues for years as well, i have to go and see a dietician ,i don't understand how this all ties in

[quasarhi]

@brennosation

Hi Fellow Aussie !

Yes I remember my eyes beginning to feel gritty...and the wind would hurt the eyes...the onset is insidious.

The stomach connection appears to be immune issues as well.

If you want to talk some more about this stuff feel free to send us a PM.

[goofygirly2010]

I have several A.I. diseases & mixed connective tissue disease. It turns your life upside down and people just don't understand the seriousness of these conditions-It is so frustrating, I steals your life if you don't keep fighting, learning and trying new treatments. I have the HLB27 marker and I have ankylosing spondylitis, R.A. Sjogren's, IBS, Chronic Fatigue and dysautonomia & mitral valve prolaps. All of these compound my already present Depression & anxietyGod Bless you :)

[quasarhi]

@goofygirly2010 Hi goofy

Yeah HLAB27 is a baddie..seems to be associated with multiple Autoimmune Disease...as it is with Arthritis....my take on it is that it is generally making our bodies less self tolerant to its own immune system.

I started with one AI now several....we need to hope scientists can one day understand the immune system...Perhaps they will find a way to correct the HLAB27 gene...yet I dont think we will benefit maybe our children...still we hope that breakthroughs come to us.

[anniebella10]

Hey!! My names Annie. i was recently diagnosed with Sjogrens Syndrome. I would like to talk some more..do you have FB or something like that =)

[quasarhi]

@anniebella10

Hi anniebella

Apologies for taking so long to reply...I somehow missed your comment.

I dont do FB sorry..but happy to chat via email or other ways...send me a message if so.

Take care

[RavenHairedBeauty1]

Anyone ever test positive for Parvo Virus B19? I heard there is new evidence to support this may cause Lupus to jump start in otherwise healthy people.

[cidpusa700]

celiac disease is a big cause for autoimmune disorders and doxycycline helps to get a doc on the web use cidpusa offer great help in autoimmune disorders

[taffytown1]

Hi

It took 17 years to dx me with hughes syndrome sjogren's syndrome Lupus and Post virol syndrome i know what you are going through i became ill after the birth of my 3rd daughter when i was aged 27 i am now 54 i don't have a good quality of life but fantastic family support good luck and god bless Geraldine

[quasarhi]

@taffytown1

Hi Geraldine..Thanks much for your reply...Yep we are up against it in so many ways..and only we know how it is....My best for you....hope one day they figure out how to control the immune system for us.

My best

[AlexBoy123HBG]

@quasarhi Hello just want to ask you a thing im 15 years old in 4 months. for a couple months ago ,my eyes was dry , and i waited about 1 week and the drynes went away. but now it has come back.. and my mouth was abiy dry also. but the thing is im about chubby little meat on the bones :p so im worried if it can be diabetes typ 2 ,but i dont think so cus you usally get that when your old.. please comment back

[Chadstravels]

Have you tried anti biotic therapy? I m considering it for reiters...

[quasarhi]

@Chadstravels

I have..but please do try it for yourself as it might work

Good Luck

[Chadstravels]

@quasarhi I think I will. Nothing to loose. If you don't mind; how long and which antibiotics did you try? I am also curious if protozoans, viruses, fungus, toxicity,etc play more of a role in theses disorders than given credit. Have you been offered anti viral, fungus agents,etc? If docs throw antibiotics at us blindly, it seems logical that the rest of the above could be considered...yeah? I appreciate your posting also. Thank you

[quasarhi]

@Chadstravels

I tried Doxycycline for 3 months..I didnt get any better or worse whilst on it..so its worth a shot as a first try to see if things improve....yes Ive wondered if we shouldnt try antivirals not sure bout antifungals...you need a Doc who is willing to work with you.

My best of luck with it

[moneymo83]

thabk you for your post i recently have been tested postive for sjogrens no nothing about i have been sick for years like i have the flu they could nevr explain why i felt like this but i know now thank you

[quasarhi]

@moneymo83

Im glad you found the video helpful.

Yes it can be so difficult to figure it all out ..my best

[Jonasinc1]

Hey Buddy. Good luck to you.

What do doctors say? "You are fine." Patients need to become good consumers and educate themselves about medical matters and don't be afraid to put the doctor's diagnosis through a logic test. They are not gods.

I'm looing forward to blood analyzers becoming less expensive so that I can get one and monitor my own blood.

[quasarhi]

@Jonasinc1 Hi Thanks for your reply

Yes blood analyzers are useful ..but in the end you have to engage a Doc or more if you get sick...the best one you can get is one you can relate to...working on the Doc/Patient relationship to get the best outcome.

[srthomas21]

Wow, a lot of the stuff you have mentioned could be related to Celiac Disease. Have you been checked for that? Try cutting out all gluten based grains. I have atypical celiac disease and it cause all sorts of problems. I felt a lot better after cutting out wheat, barley and rye completely. Its an autoimmune disease and a lot of people with it have multiple other issues. Gluten is toxic to my body and it is estimated nearly 1 percent of the population has it but most don't know it.

[quasarhi]

@srthomas21 Hi

Thanks for your reply

I have been checked for Celiac without issue.

[tejimun]

I was hoping you could tell me what I could do and as well as what problems I might have because my doctors really don't seem to know what the he'll is going on or what do and I have sjogrens syndrome with dry eyes, nose, and mouth a bladder that doesnt empty all the way and they've started me on cytosine so any advice would be of slot of help. Thanks.

[quasarhi]

hi tejimun

Ive sent you a PM

[gunzkillu]

i have an autuimmune disease thats slowly eating away at my entire body..my symtoms the drs said were rheumatoid arthritis and a ck blood count f 750....does anyone know if this can be cured? i dont wanna die like this!!!

[quasarhi]

Hi gunzkillu

I can empathise with your issues.

Im not aware of any Autoimmune disease that has been cured. Some have been put into remission by some drugs and also stem cell transplants.(in clinical trials)

Talk to your Doctors for options in your area.

Good Luck

[quasarhi]

Some of you may have noticed that I have added 'Isaacs Syndrome' and a link to a new Isaacs Syndrome Forum...the reason...Ive just been diagnosed with this new Autoimmune Condition.

Ive also started a new forum for those people suffering from Multiple Autoimmune Disease see new link opposite the video.

[Pramtheoracle]

i got chronic blepharitis it's hellish...been 2 years now and it really changed my life i came ot realize how happy i was before all of this...and doctors and oprhalmologists treats me very casualy

yet i AM in great pain and all the times and my eyes gets worse and worse and redder every godamn given day.. they are REALLY red like demon eyes now and i had sutch pretty eyes.

but you suffer a lot more than i do...im sorry for you for people like us and i wish you all the best

i bow to you

[quasarhi]

Hi Pramtheoracle

Thx for your post..a friend of mine also gets this bad...he tries to carefully clean around the eyeIine..yet he still suffers...I empathise with you.

I think many Doc's see conditions as having a beginnning and an end...so to say you comein get a diagnosis get some eyedrops..thats it...however as we know the reality is far different. I applaud your courage

Lets hope they realise we need some real treatments to cut our healthcare costs and make us happier again.

Good Luck

[msmemiami]

I have bechets and I am 48 American and feeling really alone thanks there is nothing really on the net especially here in the States the doctors are not good at dealing with this either thanks again

[quasarhi]

hi msmemiami

Thx for your reply.

The best advice I can offer is to find a Doctor who is sympathetic to your condition. I know its sometimes hard to find a good Doc...its all we can do until they change the system to look after us better.

Good Luck

[KelleeRose1]

Thanks for making these vids, hope you do more. I suffer from two myself, Hashimotos disease, and Rheumatoid Arthritis. It's pretty scary when your own antibodies start attacking you. My thyroid is completely destroyed. Hope to get get updates on ya and see how your doing. There aren't enough support groups out there for people with auto immune diseases and unless you have it, you can't really understand what we go through. Take care :)

[quasarhi]

Hi KelleeRose1

I might another video in a few months..so dont hold your breath lol...not much to report at the moment..your so right (autoimmune disease)..your words echo my thoughts..we have so many problems yet so little is recognised and dealth with ...partly because the health system wouldnt cope with all the people needing help..so its up to one another/support groups to fill this huge void we have.

Hang in there Kellee..my mums 80 and still going with multiple of these..so there is hope!

[toppinzr]

You should find out if you have food intolerances - get tested for celiac disease first, then check for other food intolerances with elimination diet and Enterolab's testing online.

Celiac disease is an autoimmune disease so you're liable to get it since you have other autoimmune diseases. I probably have it, and now it looks like I have Hashimoto's too.

You might feel a lot better on a diet free of gluten and any other foods you react to.

IBS is often made better by elimination diets.

[quasarhi]

Hi toppinzr thx for your post

Thanks for your suggestions

I have actually been through the whole food intilerance process..been tested for allergies to food etc..no celiac yet...

Tried the gluten free for a year no improvement...my IBS is fine now..just all the other problems have taken its place.

[JeridASOhearn]

hey, I'm 19 and last month came down with reiters syndrome, in my ankle and knee, it's been going on for a month now and i've been tested positive for HLA-27B, it's a struggle, all my body is inflamed but the knee and ankle are the worst

I've changed my diet to only fruits and veggies it helps allot, stay away from the pharmaceuticals as much as possible the natural way is the only way, and let me say, eating fruits and Hemp hearts gives you lots of energy, and your not hungry for hours

[quasarhi]

Hi JeridASOhearn

Sounds like your winning..definitely a healthier diet does help..also a good holiday or some kind of time off..can slow or halt the issues,

Never heard of Hemp Hearts ..will look it up

Cheers

All my best

[lyzettesalazar]

Wow..I'm so sorry you are going through so much. I did have quite a few symptoms for years, not knowing what it was related to and was glad when they finally diagnosed me. I hope you will find relief?

[quasarhi]

Thanks lyzettesalazar for your good wishes

Glad to hear you got that final diagnosis..I think its important for piece of mind..just to know what one is up against can help

Thanks for your post

[cryzrut]

I would also like to share more information. Auto immune can be caused by adrenal exhaustion. I have been taking steps towards healing the adrenals from thos and my joint inflammation is getting better. No of my doctors thought of adrenal exhaustion. Been taking siberian ginseng, fish oil, v-8 low sodium, b complex, b-5, and glutamine and 5 htp for suprressing stress hormones im feeling better. OMG if this is my problem for 3 years of chronic joint inflammation just from exhausted adrenal glands

[quasarhi]

hi Cryznut

I just sent you message...I havnt been back here for a while..and so the questions I asked in my message are answered here by you already (my apologies)

Interesting what you are saying..and me/you have some similarities..so some of what you take (supps) might work for me and others.

I will look into them and may try some ..will let you know how we go.

These weird symptoms we suffer are a PITA ..and I wish us and others the best for improvement.

Cheers

[cryzrut]

Hi im a 28 yo male. I got sick with reiters syndrome? a few years ago and still having chronic problems. I was tested and came back hla-b27 positive. This disease sucks started off with painful urination for about 5 months, then broke out into a severe fever one night , and all my joints were on fire. Was in bed with joint inflammation for about 8 months. Then came along the prostate inflammtion which made sitting down even more painful than standing up.

[cryzrut]

My joints were always hot, and dry. Im not really sure what caused my immune system to go haywire. I thought it was from taking bad supplements with to much omega 6 fatty acids. I was supplementing with borage oil at the time to supposdly relieve painful urination, and also at the time was taking a high dosages of soy lecithin for brain health. Well around the same time is when my immune system caught fire.

[cryzrut]

I thought it was from taking bad supplements with to much omega 6 fatty acids. I was supplementing with borage oil at the time to supposdly relieve painful urination, and also at the time was taking a high dosages of soy lecithin for brain health. Well around the same time is when my immune system caught fire. Well I stopped taking all the supplements. .

[cryzrut]

After researching what possibly could have happened I found that I was taking high doses of omega 6 fatty acids from these 2 supplements and have read that high doses of omega 6 can cause auto immune disorders. Im not positive that that caused all of this but its wierd that I was taking these supplements when I got sick. It could have been caused from my girlfriend although I never came back positve for a sexually transmitted diesease. It could have been from any other nasty bacteria I guess.

[cryzrut]

I have been trying to take anti inflammatory meds to help but even when I take these it seems it helps for a hour or two then my illness gets worse and takes over again. The only healthy alternative I have found is taking a high dosage of omega 3 fish oil caps for its anti inflammatory effects. I have noticed after taking fish oil for a month at around 8 grams perday I get somewhat relief.

[Limpy2003]

I want to thank you for doing this video. I have like you, many things and not all tests show the whole picture. I got sick in the 80's and it's been a long road and many many doctors and diagnoses later and I am still searching to what is all wrong with me. I am with a my third RA (Dr. Dryland in Medford, OR) who is the one RA doctor that seems to care to figure it out! Did you ever take the drug Accutane (there are other names it's under too)? If so, look up side effects after the use.

[quasarhi]

Hi Limpy2003

Doc's in their quest to help patients with Autoimmune Diseases try lots of differing drugs..some off label.

Accutane is not one Ive heard of used before, though I see a few side effects as you say.

Hang in there ..one day we will know how to fix these problems.

I think Im up to Doc number 15 ..and so far so good with him.

All my best to you

[lameshe24]

Hi, my mom has HLAB27 and she has ankylosing spondilitis. I was tested a couple weeks ago for the HLAB27 gene marker and it came back positive...a week ago I was also just diagnosed with multiple sclerosis (MS). Does anyone out there have any information on any relations between the two? I know MS is considered to be an autoimmune disorder but I am still so confused...

[quasarhi]

The reason why you/we are confused so..is simply .. the medical knowledge is not complete to be able to answer your question..we have a lot of genes that could be related to this or that disease...however one thing is certain, that AI diseases run in the family... I can attest..generations get different diseases..

Doctors dont know the answers yet.

Id advise if you have not already to evaluate

Low Dose Naltrexone and Helminth Therapy..as well as supplements and a beneficial diet.

All mybest

[ginnyvaet11]

I suffer reiters and the worst is persistant sexual arousal syndrome. An orgasm does not make the clit go down, it stays hard for days.

[quasarhi]

Hi Ginny Thanks for watching...these darn diseases affect us negatively in so many diverse ways..I hope you can find something that helps you in the future.

All my best

[ginnyvaet11]

I got reiters when I was 29 from sex and after the conjunctivitis, joint pain, and burning pee I ended up with persistant sexaul arousal syndrome. If I have sex and an orgasm the clitoris does not go down after orgasm. I am forced into a life of celebacy even with myself. If I so much as get arousaed my clitoris can stay erect for days. It is a disease that when women suffer this they contemplate suicide.

[nasadiet23]

hi

you must check the MP

marshel protocol

just try to read and search

[quasarhi]

hi nasadiet23

Yes been there tried that (I will try anything once) it didn't do it for me however.

Thanks for posting

[Billydude9]

Thanks for sharing Ron. I've made some videos too about Sjogrens Syndrome.

Steve

[quasarhi]

Hi Steve

You are an inspiration for me to make the Video !

Thank you..and for watching..

For everyone please click on Steve's youtube name to see his videos about Sjogren's Syndrome.

Cheers