Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Bacteria and Viral Infection and Scleroderma


  • Please log in to reply
14 replies to this topic

#1 Stef

Stef

    Bronze Member

  • Members
  • PipPip
  • 20 posts

Posted 28 January 2009 - 04:46 AM

Hi All!

Jeannie's recent post about Fibromyalgia and the responses have really got me thinking.

I've been reading more articles lately (mainly on this site...which is so incredibly helpful!) about the potential role of bacterial or viral infection and the connection to autoimmune issues.

I'm curious to see how many of us have had either bacteria or viral infections prior to having pronounced autoimmune issues?

In my case, I was diagnosed with Lyme Disease the summer of 2004 (I live in the pine tree haven of Pennsylvania!), and have never been the same since. I had been camping that summer, and developed a fever, rash, horrible fatigue, and joint and muscle pain. I was treated for 6 weeks with 2 different antibiotics, and was considered cured.

Also, although I don't remember actively having any issues, recent labs show I was exposed at some point to the Epstein Barr Virus. The rheumatologist I've been seeing said Epstein Barr exposure is extremely common throughout the population, but commented he has seen (within his own practice) that almost every single Lupus patient he has treated, and several other autoimmune patients, shows they have been infected with Epstein Barr in the past.

Very Interesting!

Curiously yours,
Stef

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 28 January 2009 - 04:59 AM

Hi Stef,

If you've been following the fibro thread, you'll see I had Lyme Disease too. I told my doctor I had thought that had kicked everything off. I was living in Germany at the time and got the tick bite in the early spring. I wasn't diagnosed until late fall after I developed what looked like bruises all over my body and felt like I had a moderate case of the flu all of the time. I was treated with one month of old fashioned oral penicillium alba, but nothing else.

Another coincidence, I lived in PA for quite a while~ I notice a lot of us seem to be clustered in the PA/NJ/DE area. I don't think it is a recognized cluster (by the sclero experts), but I find it interesting so many of us either live there now or lived there at one time for some length of time.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 28 January 2009 - 05:44 AM

Hi Stef,

That's an interesting question. Various infections are listed as a known or suspected cause of scleroderma. See our main Causes of Scleroderma page, as well as our Causes of Scleroderma: Infections page.

Specific to Lyme disease (Borrelia Burgdorferi Infection) is this section on that page:

Dermatological aspects of Lyme borreliosis. The relationship between infection with B. burgdorferi and other dermatoses, especially morphea, lichen sclerosus, and interstitial granulomatous dermatitis is still debated. (PubMed) Med Mal Infect. 2007 Jul-Aug;37(7-8):540-7.

Acute exacerbation of systemic scleroderma in Borrelia burgdorferi infection. Laboratory tests showed an infection with B. burgdorferi sensu lato that was successfully treated with intravenous ceftriaxone, an antibiotic recommended for Lyme borreliosis. This case suggests that Lyme disease should be considered in atypical cases of skin sclerosis in patients predisposed to the development of systemic scleroderma. PubMed. J Eur Acad Dermatol Venereol. 2005 Jan;19(1):93-6.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 tmgilbertpt

tmgilbertpt

    Bronze Member

  • Members
  • PipPip
  • 23 posts

Posted 30 January 2009 - 09:55 AM

When I was in physical therapy school I got a really, really really bad case of the flu. It was so severe that I actually suffered nerve damage in my arm as a result from the flu. I remember having to crawl to the bathroom because I was so week. About a year after this is when I first started showing signs of scleroderma. Makes you wonder. Tammy

#5 WestCoast1

WestCoast1

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 30 January 2009 - 12:22 PM

HHHmmmm I have also had this experience. I became so sick that I had to use the counter tops to hold me up while making the kids lunch in the morning. I would end up in bed all day after that. The doctor said that I must have a virus becuase my labs were all over the place.

Since them my immune system has taken over. From scleroderma, to thyroiditis, and other fun things in between.

I never found out if I really did have a virus (that lasted months) or what, but it seems suspicious doesn't it!

Thanks for bringing up this topic. One day I really hope that we are able to put 2 and 2 together to find a cure.

Hugs~
erin
*WestCoast*

********

#6 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 30 January 2009 - 01:02 PM

Stef,
A year or two prior to the onset of scleroderma symptoms I was diagnosed with both vestibular neuritis (viral infection in the inner ear) and shingles. I've always wonder if they were a warning of what was to come.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 30 January 2009 - 01:29 PM

Interesting, which came first the chicken or the egg?

I wonder if sclero has always been lurking in the body and because of this we were more suseptible to viruses etc which hit harder and immune system compromised out comes sclero. It's just waiting for its opportunity to come out, sorta Alien like. Of course I have absolutely no idea one way or the other!

I never had any particular illness pre sclero apart from IC which is an auto immune disorder then came sclero and friends.

Trauma seems to play a part as well and I have certainly had that! :lol:

Amanda
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#8 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 30 January 2009 - 02:50 PM

I was deathly ill in 1989...hospitalized for a couple of weeks....high fevers, unbelievable esophageal pain, so sick they though I had meningitis (but luckily I didn't)...they never did figure out what it was......after that I started getting fevers constantly, join and muscle pain, etc which lasted several years....always felt like I had the flu, etc....then by 1994 I was diagnosed with FM...and the UCTD....
Sending good wishes your way!

#9 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 01 February 2009 - 10:34 PM

While still recovering from a hysterectomy in December of 2002, I took an exhausting plane trip to visit my family in California. While there, I got a nasty upper respiratory viral infection from my young grandson. It kept me down for weeks and it was then I started having symptoms like rheumatoid arthritis. I had the typical scleroderma sausage fingers, though that word didn't come up at the time. Like Amanda says, I always felt like the trauma of the surgery followed by the virus while I was still down (in combination with going back to work to soon and the jetlag from the trip) made my autoimmune responses kick in with a vengeance.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#10 mando621

mando621

    Silver Member

  • Members
  • PipPipPipPip
  • 210 posts
  • Location:Wisconsin

Posted 02 February 2009 - 02:27 AM

Another interesting topic. Add to that Stress.

About 3 years ago I was working on my masters degree, and I did a research paper on the relationship between the immune system and stress. It was for a stress management class that I took in a winterum (3 weeks, talk about inducing stress!!).

Anyway, I was reseaching the relationship between high stress and Sjogrens specifically because that is what I was experiencing. It was interesting to find out that the whole stress response of the body, and the immune system going out of whack has been confirmed.

I've had extreme periods of stress in my life due to job changes, job, school, kids, you name it. Just before the main symptoms of dry eye, dry mouth, fibro, etc. all came on, I was in a time of extreme stress while we were trying to move. I was alone with the kids in one state while my husband was living with my parents in another state after starting his new job. I was still working, trying to keep the house in "show" condition with a 3rd grader, kindergartener, and 3 year old, and more or less trying to keep everything going. I had an irregular heart beat one night so scary I went to the ER. They couldn't really find anything wrong. I ended up going through a holter monitor test which found tachycardia. Also, just before this I was involved in a car accident and had developed aura migraines and had numerous tests to try to figure out all that. I'd also had strep throat for the first time during this mess.

It was after going through with my masters degree that I really found myself suspecting scleroderma. As far as I know I've never received a tick bite, but I've been a camper in the Wisconsin area for years. Who knows.

Mando

#11 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 608 posts
  • Location:UK

Posted 02 February 2009 - 02:32 AM

This is an interesting topic, I had Glandular Fever in my 30's and then developed endometriosis & ended up having a hysterectomy it was after this that I began having all sorts of weird problems with my health & Raynaud's kicked in. They kept saying my blood tests were showing I had some sort of autoimmune condition.

#12 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 02 February 2009 - 05:01 AM

I hope some researchers are reading these! If they could figure out the right questions to ask and we'd all answer them, think of the leads they'd get.

I had 2 unsuccessful surgeries in one year (2001) to correct a 'female problem' and a total abdominal hysterectomy and 'rebuild' of just about everything in the 'south 40' the next. #1 one son missed going down with the North Tower of the WTC by 5 minutes. He spent the next month going to wakes and funerals for good friends and colleagues. He got married 2 years later and became deathly ill on his honeymoon (in Europe). That was diagnosed as sarcoidosis, which was bad enough, but they were concerned for several months that it was an aggressive form of lymphoma. I was diagnosed with the sclero in 2006~
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#13 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 03 February 2009 - 09:11 AM

Hi!

I've been reading this thread, with interest, since it began.

I had symptoms present in 1991, yet things really began to turn while working with my husband in the latter part of 1994 and early 1995.
My Psoriasis flared in November of 1994 covering 98% in/out and I ended up at the ER to receive a shot of Epinepherine, which calmed the flare.
In February of 1995, I had been having pain in my wrists and was dropping things, which posed a real problem, due to the fact I was having to lift 70# sacks and was afraid I would end up hurting my husband or myself. I went to a dr who, after performing an electromyography, found that I had advanced Carpal Tunnel, which puzzled us both, because the symptoms had only been with me for a month! I had surgery on both wrists.
With flu-like symptoms, I dropped 18# in a month's time, unable to keep anything down that I ate... this was in August. I went to my internist, who referred me to a gastrointerologist, who was able to diagnose me with Scleroderma, Raynaud's Phenomenon, GERD.

It is really something to follow the timeline of symptoms to diagnosis for each of us, isn't it?!

Hope we hear from more members!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#14 canon

canon

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 312 posts

Posted 03 February 2009 - 05:05 PM

Hi stef,

Was diagnosed with lymes disease about 12 years ago. However as the story of my life goes everyone apparently missed the diagnosis for 2 years before treatment and by the time it was diagnosed the legs were not working well, the mind, and a few other things were not working. I was originally diagnosed with shingles which was constantly rediagnosed several times until I went to a Lyme specialist. I think they saw symptoms of scleroderma too which through most of the doctors off course. The lyme spcialist first thought it was scleroderma or sarcoidosis. He got his positive Lyme and went for that. One full year of antibiotics made me feel great for 4 years straight. Then all symptoms and more came back.

With gentle thoughts,

Judy
A happy heart is good medicine.

#15 razz

razz

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 04 February 2009 - 06:45 AM

Hi stef,

You bring up a very good question. I was officially diagnosed 4/98 but I had been experiencing extreme fatigue for at least two years prior to my diagnosis. Even now when I look at pictures of myself during that time I can see the fatigue. I did wonder if I picked up a virus or bacterial infection along the way and never got the proper treatment. I had a lot of stress going on right before my diagnosis also, unhealthy diet, stressful job, insufficient sleep and rest, bought a fixer upper home and single parented a ten and twelve year old. When it was clear to me that I couldn't function any more with the pain and swelling in my hands and feet, the reality hit me that I had to see a doctor. Luckily I didn't get the go around from doctor to doctor. A rheumatologist was able to diagnose scleroderma right away.

This topic is interesting because sometimes we brush off rashes or insect bites as nothing. (Camping was also a favorite pasttime).

Hugs,
Razz
Live well, Laugh often, Love much