This Is MS Multiple Sclerosis Knowledge & Support Community

OK, I recall some time ago mentioning the fact that ALL of my major relapses have been accompanied by a herpes simplex sore on my lip...always in the same place.
My physician at the time said that that was foolish, there was noconnction whatsoever. On the surface I thought that why would it be unreasonble for a visible sign of an recurrence of a viral immune attack (cold sore), not be attached to the invisible attack of relapse.
When I brought this topic to the forum, many, many folks replied they also had the same connection.
Has anyone thought about getting a herpes zoster(shingles) vaccination?

I not only have a cold sore, I also have a rare attack of my other auroimmune disease, pemphigus, which has been in a cage for a couple of years.

I'm really wondering what is going on inside.

Do you think that shingles is something i should protect myself from? I work in an ER, we don't know who has what when they come in, we do care before we get the histories from many nursing home pt's.

Anyone had experience with this?

Thanks so much for your input folks,

Hi Msmything,

I've had it a couple of times too. 'm surprised your doctor said there is no connection whatsoever. Herpes Zoster is a form of the chicken pox virus Varicella Zoster (VZV) which has a very strong association with MS - although admittedly, nobody knows why.

After chicken pox infection, VZV lies dormant at the base of nerves and can flare up causing shingles. DNA from VZV antibodies is found in the spinal fluid of everyone with MS (not in healthy people) - but the reason for its presence is unknown. During MS attacks the level of VZV antibodies in the spinal fluid increases about 500 fold - yet there is no evidence of herpes attacking the CNS in MS. My guess is that the mere presence of herpes somehow "scares" the immune system into attacking the nerves where VZV lies dormant. On the other hand, the DNA of VZV antibodies could simply be an inconsequential by product of the MS disease process. We are only just beginning to understand herpes.

Herpes skin eruptions often follow on from episodes in life where we become physically or mentally run down - so do MS attacks.

Although there is a vaccine for chicken pox, once you've had it there is no vaccine that can stop the disease reappearing as herpes zoster. There are however, lots of remedies you can try. See my suggestions here:

http://www.thisisms.com/ftopicp-136610-.html#136610

Epstein Barr is another member of the herpes family with a strong association with MS.




gainsbourg

Hi Gainsbourg,

Thank you for the depth of info.

I know I had a killer case of mono at age 17, and my life changed after that. Had to drop out of college after squeaking thru that 1st year. The diagnosis of mono came 3 weeks in.

I had always been full of joie de vivre (sp)? And never quite got it back. My life afterwards had attacks of lassitude that interupted every attempt to get back on board.

The only good thing about the diagnosis of MS is that I had always thought of myself as too lazy to be alive, now I realize it was the ins and outs of MS relapses, as well as the other autoimmune, pemphigus. Small comfort, comfort nonetheless.

I am going to Rush University Hospital in Chicago on monday to be evaluated for an immune ablation study. I am VERY ready for a big step, I refuse to accept that my life is basically at a stand still at age 53. I can barely work the 24 hours a week I do inorder to maintain health insurance, and I'm out of options. Unfortunately, the determining factor in this eval may very well be my health insurance provider. Oddly enough, I was told yesterday that public aid and/or medicare will pay for the procedure...so if i quit my job...etc etc.. what sense is that?????
Then the scary word Obamacare??? Your health system may not be perfect, but at least you know what to expect. Navigating this takes larger brain matter than I have left I HAVE SCARS ON MY BRAIN FOR GOODNESS SAKES HOW AM I TO UNDERSTAND THIS?

Anyway, this study design is to 'reset' your immune system, allowing your own stem cells to populate it and have it come back without the MS components. In my mind that would take me back to the pre 17 year old state...my salad days....

I am under a different neurologists' care now, I forgot to ask him his take on tha connection between herpes outbreaks and MS exacerbations. I actually have 2 pemphigus eruptions on my face right now as well as the cold sore, leading me to believe I'm very active. Besides I feel like shi*

Anyway, excuse the rant, i will keep the board posted as to the Rush adventure. I'm quite excited about it. What a journey......

Itaska, see if you see a link, that would be interesting, perhaps you will have an 'early warning system' for relapses of both MS and herpes...
What a science project, huh?

msmything wrote:

I am going to Rush University Hospital in Chicago on monday to be evaluated for an immune ablation study. I am VERY ready for a big step, I refuse to accept that my life is basically at a stand still at age 53. I can barely work the 24 hours a week I do inorder to maintain health insurance, and I'm out of options. Unfortunately, the determining factor in this eval may very well be my health insurance provider. Oddly enough, I was told yesterday that public aid and/or medicare will pay for the procedure...so if i quit my job...etc etc.. what sense is that?????
Then the scary word Obamacare??? Your health system may not be perfect, but at least you know what to expect. Navigating this takes larger brain matter than I have left I HAVE SCARS ON MY BRAIN FOR GOODNESS SAKES HOW AM I TO UNDERSTAND THIS?

Anyway, this study design is to 'reset' your immune system, allowing your own stem cells to populate it and have it come back without the MS components. In my mind that would take me back to the pre 17 year old state...my salad days....

What a journey......

Very interesting! Best wishes with that! Please keep us posted - I'm very interested. For this ablation, you will receive chemo to basically kill off your existing immune system like a bone marrow transplant?? or am I mistaken?
Deb

You're correct Deb, they do 4 days of chemotherapy, then keep you in protective isolation until you regrow enough red and white blood cells to make it in the real world.
One of our family elders Lyon, sent me some very interesting articles with regard to it's history.
The process has been around for a long time, not necessarily used in MS.

I just spoke to the staff there, the appt on monday has been put off until the 4th.

I was able to talk to a new coordinator, we talked a bit about the insurance issue. Since open enrollment is coming up, they will help me with sizing up my options, so hopefully I will be a 'new woman', literally, soon after the start of the new year.

Assuming of course that I'm able to continue working 'til then. I'll also be vested in my hospital's 401k as of the end of the year....another tiny safety net.

I will post along the way. I don't mean to sound unrealistic, but I'm kinda psyched.

Colleen

Colleen

Hi Colleen,

I'm familiar with the process as I was a donor for my brother. He had leukemia and had a bone marrow transplant which is pretty much the same. He had the chemo & then radiation. That was in 1983. So for you, are they using your stem cells... no worry about GVH (Graft vs. Host) then, right? The science has been around for quite some time & it has been successful.

Here's to a brand new "YOU"!
Deb

..

Lyon wrote: The theory was untested, but it seemed to explain an unexpected observation in another patient with severe aplastic anemia (SAA)—a 19-year-old who had received HiCy to prepare him for a bone marrow transplant from his sister the year before. The transplant hadn’t taken. As his blood counts recovered post-transplant, they were not his sister’s cells, they were 100 percent male, his own cells—but they had recovered. Perhaps, Sensenbrenner mused, cyclophosphamide alone was responsible for the cure.

[/quote]

Sorry for hijacking your thread, msmything....

Lyon,

This is an interesting paragraph. Cyclophosphamide sounds familiar to me... maybe it is what was used on my brother as well. I know that the procedure we went through was used for aplastic anaemia px as well. His transplant was done in Toronto when bone marrow transplants were brand new to Canada - in fact we thought we were probably going to the US when they first started typing us family members for a match. They told us that his marrow would now have female chromosomes because his donor was female (that's xx, I think), where the rest of his body is xy, so that one day if he were to develop leukemia again, it would be interesting to know if the leukemic cells were XY. This would indicate that cells were missed in the chemo/radiation procedure. If there was new leukemic cells that were xx (mine from the transplant), then they could deduct from that - something within his body chemistry just says he will have leukemia. I found this very interesting at the time. He survived the transplant, although had some real GVH issues. Just after a year (the magic date that should have meant that the transplant was successful), he started developing tumors near his spine & in his brain. The tumors in his spine were comprised of leukemic cells. Leukemia will metastasize in that way, we were told & go to protected areas.... I asked the question when this happened - are these cells XX or XY and the doctors at the Hospital in Saskatchewan looked at me like I just grew another eye. I was disappointed that scientifically, this was never questioned by the medical brains & we will never know. He passed away due to complications from the treatments he was receiving to shrink those tumors.

In the transplant process - it was explained to us that the chemo/radiation courses worked on a timing basis, so that the marrow he received from me would start re-growing all the while his own marrow was being destroyed, there may be an overlap in that timed release process of destroying his. I had to stay in the area until they knew he had new cell growth. For about a week after his transplant I was going every day to some cell separating machine in the hospital, where they pulled platelets from me to transfuse into my brother because his platelet count was threatened.

..

Hi jack away, that's why I post here there're are so many well informed folks, I love an interesting 'conversation'.

and Lyon, why the scales of justice?