Someone shared a link on Facebook about Mayo's progress in studying autoimmune-related neurological complications (well, autoimmune in general): http://m.startribune.com/lifestyle/health/297136571.html
Back in 2002, when I had severe Neuro complications out of the blue, my neuro, after running every test in her book, had consulted Mayo. At the time, they'd agreed that I sounded like a mystery but they didn't think that they could add anything. I was left with no answers and nowhere to turn.
As I wrote in other threads, I had another but less-severe bout two weeks ago. What caught my eye about the article linked was the reference to herpes virus (and Sjogren's). As I try to figure out the whys of my latest episode, I've been thinking about everything that had closely preceded it. With the change in meds, from cortef to prednisone, I've had cold sore breakouts three times in less than a year-insanely not normal (vs once or twice in 20 ys). I had started breaking out with a cold sore the week before I "started walking into walls" thus time. I'd immediately started the valcyclovir (like the last two times but even more quickly cuz I knew what to do). At some point soon after that, I experienced several nights of the worst dry mouth I've ever experienced x 100. No comparison. And then, a few days after that, walking into walls.
So I'm wondering if the virus set of Sjogren's which caused the Neuro symptoms. My specialist (autoimmune)/neuro had me get a new MRI, which I'm happy to report was negative for MS holes. He's the one who first said that if my neuro problems weren't caused by MS then it's very possible they were caused by Sjogren's. I DID get an appt w the Sjogren's specialist but in June. Luckily I'm doing better but sure as heck want an answer so this doesn't happen again!!
Anyone else ever notice a connection with cold sores? It's not 1:1 for me since the outbreaks didn't cause Neuro problems in Hanuary, for instance, but neither had I wxperience an oral Sahara Desert at that time!
Thanks for thoughts!
Pb: You must be referring to Herpes Simplex I. (since you are discussing cold sores) This is a virus most carriers have contracted during birth. I have a friend whose daughter had this. As a young child, she had breakouts periodically (maybe twice a year). As a teenager maybe 4 or more a year. As an adult they come and go. When under stress she believes the virus is more active.
As to the relationship to SjS, without studies of SjS patients with HSVI, it's hard to tell. Studies such as this would only come about if there were treatment of one or the other. What I am saying, it's unlikely the commonality will be researched.
It does not make sense that the two would be related since SO many people have HSVI. But before I was diagnosed with SjS, there is a LOT I would never have believed were concomitant to Sjogren's Syndrome. All to say, who knows?
c3
HI,
I don't have too much to add- but from what I know cold sores can either mean nothing (i.e. just viral activity) or can be an indication of other autoimmune disorders like ulcerative colitis and lupus. So maybe there is a general autoimmune connection for you? It sounds like you are in good hands and getting good care.
Best of luck-
Rachel F.
Anyone who has autoimmune disease is higher risk for infections. The immune system and the autoimmune response are very highly integrated and can have some overlap.
Herpes virus or cold sores and many other viruses are more apt to show up in people with autoimmune disease. It is also known that some people with Epstein Barr are more apt to get autoimmune disease. Bottom line is that it is hard to know what comes when, but they can be related.
Also, I am of the opinion that all people who have autoimmune disease should have blood work done to check for immune deficiencies. I was first diagnosed with Sjogrens 2003 and did get Mycobacterium kansasii in 2005. This is a non contagious form of TB that needs to be treated for one year with 3 different antibiotics--8 pills a day! No docs checked my for immune deficiency until mu ENT sent me to an immunologist. I had an in depth physical and blood work and was found to have myasthenia gravis, hashimotos and severely low t-cells. I had many infections every year for many years and no one even questioned it. Here I was in tough shape .
Never would have suspected it and was totally surprised. No wonder I had such devasting infections with my dental abscesses. I could have died! More and more docs are finding their is an overlap with autoimmune and immune disease. Good luck All. Irish
I have read studies that suggest a potential linkage to AI, but I don't think they've nailed anything down yet.
I had one period in my early 40's when I had cold sores that literally came back-to-back for about six months :( They were so bad that sometimes one hadn't healed before the next one (or multiple ones) appeared. THAT was a nightmare period :'( No amount of Tea Tree or Oregano Oil, ice cubes, or crushed garlic (recommended treatments at the time) brought any relief. A couple of months in my doctor referred me to another doctor who specialized in treating herpes (a rare specialty at the time) - and of course there was a 3 month wait to get in. When I finally saw him he spoke about the possibility of a compromised immune system, the impact of stress, etc. and prescribed Valtrex for suppression - a schedule I adhered to for several months. Although Valtrex gave me terrible headaches, I don't think I've ever been more grateful for a medication, because the cold sores finally stopped.
Cold sores were not the only health issue I had during that period of my life, and in retrospect I think that was the beginning of what became a series of obvious and memorable flares - although for me - no two flares have been the same.
I've since switched to Famvir (no headaches), and thankfully have never had another period that even remotely resembled that one (in terms of cold sores), so I take the Famvir only as required.
This is not about Herpes simplex, but another Herpes. Long ago, my first odd neuro symptoms came when my wonderful cat contracted feline Herpes. He fought it for 3 weeks before succumbing and I was exposed to a pretty heavy dose.
The wisdom is that human don't get feline herpes, but I think that it ran around my body for 6 weeks or so until my immune system kicked it out. During that time, I had occasional speech stutters, walking stutters, and bouts of dizziness. There were occasional relapses for the following year.
I have great respect for the disrupting power of herpes viruses of all kinds.
Some members of my family are plagued with herpes simplex.
When the virus activates, it makes me very very sick, horrible headache, ache all over, rather like a flare, and I think a flare goes along with it, but lo! and behold! out pops some herpes blisters. By then the worst is actually over.
My son has had herpes horrors since a very young age.
The virus can be lethal in new borns actually.
Hugs, Elaine
I have neurological presentation. I saw a terrific neurologist who specializes in autoimmune neurological disorders. His take is that the inflammation associated with the autoimmune disease is the cause of the neurological issues, both CNS and PNS.
Which is different from possible triggering of autoimmune disease. There are those that feel that some autoimmune diseases are triggered by severe infections. I know my autoimmune symptoms became severe after a bout of cDiff.
The bizarre reality for me, warmwaters, is that I don't have an autoimmune system. I only have a deficient immune system, which attacks me. I have SFN and Profound PN, as well as Sjogren's (but of course NOT truly Sjogren's since it isn't autoimmune) IC,anemia, and a lot of other things.
This lack of autoimmune factors is the reason I have never tested positive for any autoimmune condition. It is also why I'm glad I didn't ask for Immune suppressants, even when my symptoms were piling on there at the end.
Finally after so many many years, the Immune Deficiency was identified as the culprit.
Having had every conceivable symptom of both allergies and autoimmune conditions, it has been very odd to discover that I can't have either.
Go figure. We are indeed mysteries.
Hugs, Elaine
Actually, all of these types of things have me concerned. Do you think in due time SS is going to be associated with Herpes, CMV or Epstein Virus and all of us with SS will be looked at kinda funny...if you get my drift? :(. I suppose many viruses could instigate this, but I'm not sure. I'm thinking of not telling folks I have this and simply mentioning the lupus or generic AI illnesses. I'm creeped out and concerned. :-[ :( :'(
Thank you for your thoughts and feedback. I'm grabbing at straws, trying to figure out what's going on and why I had this recent flare (which I'm STILL not completely recovered from, dang it. Set me back to my earlier problems, which had been resolved).
Also, good info about herpes virus. I wasn't sure what # the cold sore was. I'm seeing my famdoc in a few weeks because I want to ask about my immune system and see if it's still functioning. It seems to either over function or under function sigh...
What is SFN?
Nomad - I think I read something once that said virtually everyone has been exposed to the herpes virus, and just because you don't get blisters doesn't mean you aren't a carrier. Who knows? I've had it for so long it's just part of who I am - and - I have not been diagnosed with SJS.
To everyone who gets cold sores: If you haven't tried the Polysporin Cold Sore Healing Patches, I highly recommend them. They are expensive, but they are worth every cent. I find they do reduce the healing time - but more importantly, they significantly reduce the (topical) pain. The patch 'protects' the blister from cutlery and cups/glasses while it heals - and what I love is that smiling does not hurt or cause painful cracks that require MORE healing time :) I find the patches to be too large for my requirements, so I cut them in half (and double my supply!). Getting them off the little paper in a usable piece after they've been cut in half is tricky and frustrating, but I think I've got it down to a fine art now. Are they invisible? No - but then neither are cold sores ;)