Calling everyone with an autoimmune condition! Have you ever been infected with the Epstein–Barr Virus?

The Epstein–Barr virus is mostly known as the cause of glandular fever.

Autoimmune disease awareness

Autoimmune disease awareness

But in recent years it is also has been shown to be related to a  number of types of lymphoma.

Increasingly it is believed the Epstein–Barr viral infection can mean a higher risk of certain autoimmune and other diseases.   In particular Parkinson’s disease,  Lupus (https://patienttalk.org/?tag=lupus) , rheumatoid arthritis (https://patienttalk.org/?tag=rheumatoid-arthritis), and multiple sclerosis (https://patienttalk.org/?tag=multiple-sclerosis).

While many people (maybe 90% of the population) have been infected with the virus very few of us show any symptoms.

The purpose of this blog post is to find out to what extent our readers with autoimmune and similar conditions have had the Epstein–Barr virus .  Please take the poll to give us an indication.

It would be great if you would use the comments box below to say which condition you have.

Thanks in advance


 

Lindsay4 Strep several times in college (2001-2005); severe endometriosis (stage 4) at 28 that required surgery in 2009; have had 2 more surgeries since for endometriosis (stage 2 and 3 respectively); a very severe case of mono in 2010; in 2014, had my 3rd surgery for endo, and one month later I was diagnosed with LUPUS.
I was only ever tested for Epstein-Barr when I got dangerously sick in 2015, and it came up positive that I’d had it. They said I didn’t have to do anything about it(???). They could never figure out what was wrong with me at that time though.
Fatigue is insane. I take adderall just to be able to work, and I can STILL sleep all day on it. Don’t know what to do anymore.
Mamad03 I have MS, UCTD and Sjogren’s
GironLara HELLO, Good-day To You All Dear Viewers Brothers and Sisters ,Friends ,I want to shear a testimony on how Dr Lugard help me cured a virus called herpes simplex virus, I am so very happy today because I am free from the disease/virus of Herpes, My name is GIRON LARA from USA , I have been having Herpes since the past two years now, and I have pass through many different processes in getting cured from the diseases virus of HSV2 but nothing was working out, a friend of mine on Facebook called Harry Lura introduce me to DR LUGARD,and also give me hes email address ( or ) http://drlugardspellhome.webs.com/     that he is the only one who can helped me get cured from my Herpes and any other diseases i may have , so I contacted him and have faith on him, All thanks to the gods of DR LUGARD , after sending me the herbal medicines which he has prepared for me, my life get transformed and everything was fine and Okay with me, till now I have been going to check up and its now going to tow-months now I am still negative. All thanks Goes to DR LUGARD and My Friend called Harry Lura for what she has done for me and my family… if you are also passing true problems, pains or any type of sickness or diseases i will advice you to contact DR LUGARD now by emailing him now at:( or ) You can also call him on these Mobile number  okay . TRULY DR LUGARD YOU ARE THE BEST MAY GOD-ALMIGHTY REWARD YOU FOR YOUR GOOD WORK OKAY, I WILL CONTINUOUS TO TESTIFY OF YOUR GOODNESS UNTIL MY LAST BREATH IN THESE EARTH MY BEST REGARDS SIR.  whats-app also now or on his web sit            http://dr-lugardspellhome.webs.com/
IE I have MS Primary Progressive, had mono as a teen and spinal tap revealed EBV antibodies.
lemonfoundation aredmosquito   MS is Lyme disease cover-up. http://www.cfsstraighttalk.blogspot.com
aredmosquito I have MS, have never had mono, and was tested for antibodies to EBV which came up negative.
DebbyReaana Relapsing Remitting Multiple Sclerosis.
RachelSouth Fibro with other undefined and diagnosed with asthma last year, which is still not controlled.
andersoncarol1212 My name is Carol Anderson, I am here to give my testimony about a doctor who helped me in my life. I was infected with HERPES SIMPLEX VIRUS in 2010, i went to many hospitals for cure but there was no solution, so I was thinking how can I get a solution out so that my body can be okay. One day I was in the river side thinking where I can go to get solution. so a lady walked to me telling me why am I so sad and i open up all to her telling her my problem, she told me that she can help me out, she introduce me to a doctor who uses herbal medication to cure HERPES SIMPLEX VIRUS and gave me his email, so i mail him. He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks the HERPES SIMPLEX VIRUS that was in my body got cured . so if you are also heart broken and also need a help, y

JosephDieva I was dx with : Mono and Infectious Heppatitius in 1982 , dx with Eppstein – Barr virus in 1986 , dx with “Leaky Gut” in 1999 , dx with Hypo thyroidism in 2010 and dx with M.S. In 2013 ( my feet started to go numb in 2008 , a sign of M.S. to come ) !!!!!!

JackieBax Fibromyalgia, Hypothyroidism
TinaMulhall
tinamulhall@yahoo.ie
78.17.60.113
Ulcerative colitis. I had EBV and chickenpox as a child.
loulou02
lyndav1@live.com.au
49.181.78.27
I have fibromyalgia. Yes I have had EBV Ross River Virus and Barmah Forest Virus.
RandiLynnHart
gimmedanger87@gmail.com
66.87.78.222
No EBV related anything for me.
Roxannestanbridge
Roxanne_caldwell@hotmail.co.uk
46.254.249.208
Glandular fever at 18, MS diagnosed at 30 although had a few relapses from 18 yo
GinnyIckle
pickledginger@gmail.com
208.103.65.134
Hx of Ebv, cmv, chicken pox, shingles x2, Lyme disease.
Have celiac, multinodular thyroid, cf, fm, Sjogrens, t2diabetes, Dysautonomia.
Pam Crittenden
plwc@comcast.net
98.209.15.5
Severe case of mono at 17 (1978) diagnosed with MS at 32 (1993).
GillianCunninghamWright
gilldusty2@btinternet.com
86.146.4.251
I had EBV, chicken pox, scarlet fever, mumps, tonsillitis. Diagnosed with glandular fever in 2006, never recovered, now have M.E. Fibro and Type 2 Diabetes.
thequeenkat I Contracted Mononucleosis When I Was 15, Which I Am Certain Was Followed By Me Developing Narcolepsy. I Also Have PCOS, Hyposmia, Auditory Processing Disorder And Now Am being Evaluated For Multiple Sclerosis. Narcolepsy And All Other Conditions Were Diagnosed In My Early Twenties, Although I Know I Had Them Most Of My Life. The MS Is A Recent Development. Sorry If My Post Is Typed Oddly, I Am Having Problems With This Android Phone.
KathyHastings I was infected with EBV along with many other viruses in my body; prior to also dx with Celiac Disease.
JosephDieva Yes , I was diagnosed with Eppstein – Barr Virus in 1986 !
CheyMcKenzie Gladular Fever aged 13, diagnosed MS aged 41 but believed to have had it a few years by then.
JosephDieva Was diagnosed with Mono and Hepatitis in April of 1982 , diagnosed with Eppstein – Barr virus in April of 1986 , developed first sign of M.S. IN SUMMER OF 2008 and finally diagnosed with M.S. in March if 2013 !
touzell Had glandular fever 30 years ago.. 2.5 years ago diagnosed with psorathic arthritis and this year ensinophilic esophagus. Interested to further studies relating it all.
lemonfoundation HIV-Negative
AIDS: Is it CFS, GWS, or AIDS?
Allied NATO Government is hiding millions of
infectious NON HIV AIDS cases (like mine) under the “Chronic Fatigue
Syndrome (CFS)” ICD-code.
– Dr. Lorraine Day on Joyce Riley’s military show THE POWER
HOUR (09/12): “…HIV-Negative AIDS cases falsely reported and
treated as CFS cases may be one of the biggest cover-ups we have seen.”
– In 1992 “…Newsweek made an even more shocking
announcement: …CFS patients who had the same immune system deficiencies as the
NON-HIV AIDS cases…”– Dr. Judy Mikovits stated on In Short Order (11/12) about CFS &
Myalgic Encephalopathy (ME): “…consider this as NON HIV AIDS.”

– Neenyah Ostrom’s book “America’s Biggest Cover-up: 50
More Things…CFS & Its Link To AIDS” cites: “Some CFS
Patients May Be Non-HIV AIDS Cases.”
My case goes up through the NIH, CDC, White
House, WHO, to the UN. I testified
federally in Washington-DC, and am published 24 times on 4 continents
(including PEOPLE’S VOICE, FROM THE TRENCHES WORLD REPORT, PFLAG, & FUSE
MAGAZINE).
Everything about NON HIV AIDS (including my federal testimony):
http://www.cfsstraighttalk.blogspot.com
Or simply google “NON HIV AIDS”

NancyD64 Diagnosed with EBV at 16 after a year of being sick, missed a semester of high school. Diagnosed with RRMS just shy of 36 y.o. living, with it 14 yrs.

 
shurl Stirling my son was diagnosed with neuro sarcoid, if was treated with steroids.if was diagnosed with other conditions because the neuro s mimics other conditions.checkout Joe Stirling on Google. He’s a rare case (less than 2 people suffer the neuro sarcoid in 100,000 ) nobody, not even professors know what causes it. ???? i can’t believe that.
virgo54 Had a very severe case of Glandular Fever over 30 years ago, was hospitalised for a week. 10 years ago developed Primary Progressive Multiple Sclerosis (PPMS)
CameoCamylMassey Diagnosed with EBV in 1987.  Had it for many years but none of the doctors knew to look for it.  They just gave me antibiotics and amphetamines to keep me going, until my immune system collapsed.   Wound up bedridden for 3 years, unable to use arms or legs, unable to chew food, no short or long term memory, lymph nodes swelled like ping pong balls and turned purple/blue, and would sleep 72 hours and still be exhausted.  I finally overcame that and rehabilitated myself, but was then told I had Fibromyalgia and a compromised immune system.  Since then I have had shingles that turned into MRSA, and a systemic infection that has led to 8 major surgeries to remove major parts of my body.   Was just told by a Rheumatologist, that my Fibro is back in full flare.
graceg In reply to MelissaKisnerSouthard.MelissaKisnerSouthard
Hi my name is grace,what is Auto Immune Hepatitis,or can u tell me where to find the information on it. Thank you  I have sle,ra,fibro, diabetes,etc. I have just found out over the phone about me having hep c. I just don’t get it?? Thanks for your posts.  🙂
Roxannestanbridge I had glandular fever in 2000 and been treated for Labrynthitus x3 times since – until I got my MS diagnosis in 2011
Taneesa I’ve had mono, phenomena several times and fevers out of the blue for no apparent reason since i was a child
KathyHastings Yes on EBV, also Chicken Pox Virus, Herpes Virus; many were running rampant in my body, because my body was so busy trying to attack the gluten….all these virus attacked my CNS. Result Celiac Disease….anti-viral med….3yrs later….levels are down, but still considered high. So, I also have dx of CFS.

 
katieg glandular fever at 18, hypothyroidism for 20 years, psoraitic arthritis over 10 years, MS diagnosed 2011 but optic neuritis in mid 1990’s
SallyNickle I had Mono when I was 17.
MelissaKisnerSouthard Yes! I had EBV when I was 18. never sick a day before that. Now I have Hypothyroidism, fibromyalgia, Lupus and Auto Immune Hepatitis. I have always thought it was connected to the EBV!!!

World Arthritis Day 2013 – Find out more about the ‘Waving for World Arthritis Day’ and see how you can help!

World Arthritis Day

World Arthritis Day

Saturday is World Arthritis Day we are proud to share the fantastic media information created by the team at World Arthritis Day (http://www.worldarthritisday.org)

“Over 50,000 people from over 80 countries around the world are waving their support for people with rheumatic and musculoskeletal diseases

Today we celebrate World Arthritis Day and our campaign to raise awareness
of the importance of physical activity for people with rheumatic and
musculoskeletal diseases (RMDs).

In May we invited people to send us photographs and videos of people waving their support
for World Arthritis Day and people with RMDs. The response has been amazing, and the
numbers of people waving continues to climb day by day. Waving is a small gesture, but we
hope our campaign will have a big impact in helping people with RMDs to become more
physically active and encouraging policy makers to support all efforts to facilitate this.


Research shows that even small amounts of physical activity can benefit people with RMDs,
helping them to stay mobile, independent and able to participate in society. This campaign
is part of the World Arthritis Day 2011-2012 theme of ‘Move to Improve’.

Photographs and videos, featuring families, teams and individuals waving received up to 16
September have been included in a superb mosaic photomontage that campaigners will be
using for their World Arthritis Day events and promotions around the world.

“We are thrilled by the number of people who have contributed to our waving campaign,”
says Maria Batziou, leader of the World Arthritis Day Task Force and Chairperson of the
Standing Committee of PARE. “The support and enthusiasm we have received has been
fantastic and we would like to thank each and every person who took the time to send in
their waving pictures and videos, as well as all those who have been actively involved in
spreading the word amongst their networks.”

Word about the campaign has spread through an active social media campaign and, to
inject a little healthy competition into the campaign, countries have been ranked and the
top five with the most people waving are feature on the Home page of the website – other rankings can be found by country. As some awareness campaigns fall after the 12 October the waving gallery will remain open until 31 October. Waving photographs and videos can be uploaded to the World Arthritis Day website via a computer or mobile device. Simply visit
www.worldarthritisday.org/waving and follow the five easy steps.


World Arthritis Day, which is celebrated every year on 12th October, provides a platform for
people with RMDs to make their voices heard and to highlight some of the issues faced by
people living with RMDs. RMDs, including rheumatoid arthritis, osteoarthritis and
ankylosing spondylitis, affect over 120 million men, women and children of all ages in
Europe alone.

For more information on rheumatic and musculoskeletal diseases (RMDs) and physical
activity visit the World Arthritis Day website http://www.worldarthritisday.org.”

They have also produced some rather useful background info which we would like to share.

What is ‘Waving for World Arthritis Day’?
Physical activity is vitally important for people with rheumatic and musculoskeletal diseases (RMDs),
which is why the ‘Move to Improve’ theme was created for World Arthritis Day (WAD) in 2011
/2012.

To generate awareness of some of the key issues facing people with RMDs in and build support for
the WAD ‘Move to Improve’ theme the Waving for WAD campaign provides a fun way to promote
an important message, by inviting everyone to photograph or video people waving for WAD – a
physical activity anyone can participate in!

Supporters from around the world joined in by taking a fun picture of their friends, families,
colleagues, team mates and wider networks waving their hands, arms or whole body. Pictures and
short videos of people waving were uploaded onto the World Arthritis Day website
(www.worldarthritisday.org/waving). Each person seen waving for WAD in the photograph or video
was counted. Photographs and still images from video footage of people waving received before 16
September have also been used as pixels in a giant picture (photomontage) to be used in national
campaigns on World Arthritis Day (12 October).

About rheumatic and musculoskeletal diseases (RMDs)
RMDs encompass more than 200 different diseases including inflammatory diseases such as
rheumatoid arthritis and ankylosing spondilitis and degenerative conditions like osteoarthritis and
osteoporosis.

RMDs are characterized by pain and a consequent reduction in the range, motion and function in
one or more areas of the musculoskeletal system; in some diseases there are signs of inflammation:
swelling, redness and warmth in the affected areas. Rheumatic diseases can also affect internal
organs.

Key facts
 In the industrialised world rheumatic and musculoskeletal diseases affect more individuals than
any other disease group, with 120 million people affected across Europe alone
 One third of people are affected by rheumatic and musculoskeletal diseases at some point during
their lifetime and people of all ages can be affected
 Musculoskeletal complaints are the second most common reason for consulting a doctor and
account for around 10% to 20% of all doctors visits
 75% to 85% of people will suffer from low back pain at some point in their lives

 

 

10 Things You Didn’t Know About Me! National Arthritis Week!

National Arthritis Week 2013

National Arthritis Week 2013

As part of building awareness for National Arthritis Week Catherine Manning has very graciously given us permission to repost her post on the subject.  To check out Ms Manning’s excellent arthritis blog (called Old Before My Time) please head over to http://arthritis-sucks-oldbeforemytime.blogspot.co.uk/.

“It is nearly National Arthritis Week!! and I am proud to be dedicating some of my blog posts to NAW!!

I thought I would start with a “10 things you don’t know about me!” so here goes!!

1) The condition I have is called Osteoarthritis. The common misconception is that only older people get OA. I am living proof that this condition can affect anyone at any age!

2) I was first diagnosed and treated at the age of 12. Very young I know. I had my first arthroscopic surgery when I was 12.


3) My condition affects every aspect of my day to daylife. Imagine struggling to get out of bed, having a raised toilet seat because you can’t get on and off the toilet otherwise. Needing help to shower, dress, cook dinner, make a cup of coffee. Not being able to do the school run without help or do the shopping. That’s my life.

4) Since my condition has progressed to this stage I have taken up blogging and trying to raise awareness of all forms of arthritis especially how it affects younger people.

5) Living with arthritis has taught me to value the small things, the little achievements that most people take for granted. To listen to by body on what I can and can’t do. It has also made me realise who are my true friends and that my family are everything to me.

6) My advice to other people living with osteoarthritis would be do your research, get support medically and emotionally. Listen to your body! You can still have fun and enjoy life!

7) A gadget I couldn’t live without…my laptop/smart phone! When pain is so bad I can’t get out to meet up with people or just get some fresh air I am able to log onto the internet and chat with like minded people on support groups. It means I am not so isolated as living with arthritis can be very lonely.

8) Apart from my pain medication, my supportive hubby and gorgeous children get me through a really tough day. Just a gentle hug and an understanding smile can mean a lot.

9) I am very lucky as I have a very supportive husband who helps me in almost every way. My parents live in the Highlands and are making the 18 hour drive down to where we live to help me and look after the children while I have my right knee replaced next week. I have some wonderful friends I have met online too one especially has turned out to be one of my very best friends. Cara, has RA and a number of other autoimmune conditions. She is always there at the end of the phone or email or support group to chat about anything and everything. Having friends who understand are worth their weight in gold.

10) This National Arthritis Week I would like to say thank you to: My Husband Paul, for everything you do for me and your unconditional love and support. To my Mum and Dad for dropping everything to come and stay with us while I am in hospital. To Cara Davidson, for being Cara, for making me laugh and for just being an awesome friend. To the Doctors and Staff at the Royal National Orthopaedic Hospital.”

You can find out more about National Arthritis Week which begins on Monday by going to http://www.arthritisresearchuk.org/support-us/get-involved/national-arthritis-week.aspx


October in Lupus Awareness Month – share to raise awareness please

This month is Lupus Awareness Month.

Lupus is part of the family of autoimmune arthritis conditions.  To find out more about autoimmune conditions please check out our previous blog  on the subject https://patienttalk.org/?p=939.

In fact different countries have different awareness days, weeks and months for different conditions. To learn more about Lupus  check out our previous awareness blog here https://patienttalk.org/?p=270

For more information on events for Lupus Awareness Month please have a look at the offical web site http://www.lupusuk.org.uk/latest-news/lupus-awareness-month. There is a lot of useful information on the site.

Finally  please feel free to share  the graphic below which we have produce for Lupus Awareness.

 

Lupus Awareness Month

Lupus Awareness Month


Natural Treatments for Arthritis


Cherries - an aid to pain reliefIt has been estimated that more than 50% of people with arthritis have tried some kind of natural or alternative treatment for the condition.

There are over 100 different types of arthritis including fibromyalgia, osteoarthritis, rheumatoid arthritis, lupus and gout. Each of them affects the body in different ways.

The objective of this blog is to have a look at some of the alternative treatments for arthritis and to get feedback from our readers as to how effective these natural therapies are.    We can only cover some of the treatments in a blog post like this so it would be great if you use the comments box below to add any suggestions you might have for alternative therapies for arthritis.  and to  share your experiences of how effective they are.

So here goes:-

a)      Diet as a way of treating arthritis pain.  For more information please have a look at our previous blog on the subject  https://patienttalk.org/?p=507

b)      Similarly diet can help with inflammation.  Check out our other blog on the subject here https://patienttalk.org/?p=468

c)       Yoga and similar exercises such as Tai Chi.  Exercise is important for people with any kind of arthritis.  Low impact exercise like this helps improve both balance and muscle strength.

d)      Acupuncture seems for some to be a way of dealing with the pain.

e)      Supplements are available but please check with your doctor before using them as they might have an effect on the conventional medications you use.  These supplements can include Chondroitin sulphate and Glucosamine sulphate.

f)       Famously it has been thought that wearing a copper bracelet can help with some of the arthritic symptoms.

As we said before it would be great if you could tell us your arthritis story below.  Please add any links you think may be of use to other readers.  What have you tried and how did it work for you?  You may wish to consider some of the following questions when you make your comments:-

1)      What kind of arthritis do you have and how long have you had it?

2)      What conventional treatments have you used and how effective were they?

3)      Have you used natural treatments and how well did they work?

4)      What was the reaction of your healthcare providers to your use of natural remedies?

Thanks very much in advance.