Vitamins, viruses, and the roles they play

Ok, well I know that the fact I got itp is frustratingly hard to figure out. I'm also lucky that itp only happens once every six years bur I still think of others who have it alot and it bugs me that anyone has to go through it. But I wanted to ask people whether they get their vitamins checked on a regular basis? My vit d was low once at 8. Checked this year and it's better. My vit b12 is borderline low 252 along with lower then normal ferretin levels but not so much that my docs say I need to take supplements. I just today contracted Shingles....Yes shingles??? And it got me thinking about immune diseases again. My constant fatigue is driving me nuts. My itp alone never caused this even at counts of 6. But over fifteen years after getting itp, I have othe symptoms. I'm wondering along the lines whether people who have parents wit auto immune problems should be screened younger, (before an auto immune disease is triggered) with vitamin and virus tests. Maybe if they tested people before they developed itp, they could see the exact change that happens? Surely, there has to be an answer to why I developed this. Yes, it's in my genes, but I was healthy until something was triggered. I need peoples thoughts. I'm hoping to write an article about auto immunity. I need as many opinions.

So my two questions are ?? Do you check your vitamin levels regularly
Do you think that before people who have immune suppressed parents should get screening prior to any auto immune disease so we can monitor the changes!
thanking you in advance.

I could write a book about this.

I have chronically low levels of many things....Potassium, Magnesium, Vitamin B-12, Vitamin D and Ferritin. I say chronically low because if I stop the supplements, the levels drop right back down. I have to take high dose, individual supplements and it can take forever to get the level to a normal range. It took 14 months of Vitamin D at 50,000 IU's a week to get the level to 50. It's back down again and I'm back on the script.

I eat well, but I think the problem is that some people with autoimmune disorders do not properly absorb vitamins from food. My daughter who has Graves also has low levels of the same things that I do. I have to constantly remind my doctors to test those things because they don't do it otherwise.

I don't know that it would be possible to test people before they develop an autoimmune disorder. There are so many different tests and until a person has symptoms, you wouldn't even know where to start. My healthy daughter asked me that once: Should I get tested to see if there is anything in my system? Test for what? Many things don't even show up until after symptoms begin, so it's not very practical. Each autoimmune disorder has a list of specific tests for that disorder. Even after I had quite a few Lupus symptoms, my blood work continued to show many negatives. A year and a half later, things began to be elevated. How would you test for ITP before you show low platelets? We know that children of parents with autoimmune disorders are genetically more likely to get one, but you don't know which one it might be. I also think that would cause a huge insurance problem if one knew ahead of time, especially since it may not ever be triggered.

Oh, also....when I first found out that my B-12 was low, I did a lot of research. Many sites stated that B-12 should optimally be above 400; that people can have symptoms below that. Sublingual B-12 is the best, preferably 2,500 mcg's. It doesn't hurt to supplement B-12 when on the low side. No reason to wait until it is below normal.

I see what you mean. I do think there must be something that's identical in these diseases that will lead to a clue.
I think you are right about the vitamins I wonder if my vit b12 was lower previously as I had some funny symptoms but when they finally testd it it was coming back up. I've been eating so good lately, leafy greens, gluten free bread,a fruits. Funnily, I land with shingles. Il take your advice and opt for the sublingual b12.

I had shingles last May. It started with the loss of use of my left hand. I guess the nerve affected the muscle and my left hand was so weak I couldn't tear a piece of paper. Two days later I noticed the blisters and got treated. My hand is still not normal after weeks of PT. Have you been on Prednisone lately? People are very susceptible to shingles if they are on an immunosuppressant. I hope it's not too bad for you.

If there is a clue that links autoimmune disorders, medical science hasn't quite found it yet. If you did have the knowledge that you may acquire a disorder, what would you do to stop it? I'm glad that I didn't know that ITP and Lupus were headed my way. I wouldn't have wanted that cloud over my head. I don't know what I could have done differently to prevent it. There are people here who exercise, eat right, don't smoke or drink and they still got ITP. What else can you do?

Shingles can be caused by stress - I really don't think getting shingles has to do with eating good or not. I've had them 2x - neither time was I on anything that was suppressing my immune system. One time before ITP hit - 2nd time about 13 years into ITP but hadn't treated for a long time.

Who said food has anything to do with getting shingles? :ohmy:

I agree, they can be brought on by stress and also by being exposed to the virus. That is rare these days though because children don't get chicken pox much any more.

"I've been eating so good lately, leafy greens, gluten free bread,a fruits. Funnily, I land with shingles."

Well Sandi I probably read it wrong, as usual - but I took this to mean: In spite of eating healthy she still got shingles and because of eating right she shouldn't have gotten shingles.

So I said: I really don't think getting shingles has to do with eating good or not.

Sorry.

Nope, it was me.

No, sandi. Haven't been on anything except a half a tablet of florinef. Not sure why, I wasn't really doing much to cause it to go down. I started to get a piercing pain in my left shoulder and a day later noticed the rash. The funny thing is I didn't at first associate the piercing pain with th shingles. Cos ivr had that weird piercing pain sometimes. But it was more intense with the rash. It seems to be not too bad but I did catch it like 24 hours and started treating it immediately. Oh well. Just Tired. Who knows what causes shingles. I think they are quite common though? I know loads who have gotten them.

A friend of mine had them last December and ended up in ICU with meningitis. She has residual nerve pain...one of the unlucky ones. Her rash didn't come out for a week after symptoms began, so it was a late diagnosis and not treated early enough. Without the rash, it's impossible to know what is going on.

I discovered my blisters at midnight on a Friday night. They were on my upper arm underneath, near the arm pit so not very visual without a mirror. I knew what it was and wanted the anti-viral right away to avoid more nerve damage, so went to the ER. I woke my husband up and told him that I was going, and he said, "You decided in the middle of the night that you suddenly have shingles"? Yep, pretty much.

I think we are going to be seeing a lot more cases of shingles, at younger ages than before, and here is my theory why.

When we got chickenpox in childhood it gave us an immunity to the virus, but the virus stayed hidden in our nerves, held in check by our immunity. When we are exposed to children with chickenpox, our immune system kicks in to protect us, and each time this happens it is like getting a booster shot that recharges our immune system. Being exposed to chickenpox strengthens our immunity.

Fast forward to present day: children are getting vaccines instead of having chickenpox, so we are rarely exposed to the virus. Over time our immunity weakens, and leaves us more susceptible to shingles, unless we get the shingles vaccine.

I am hearing of twenty and thirty-somethings getting shingles all the time now.

In the UK, kids aren't vaccinated against chicken pox and all my children had it before the age of 3. My youngest son had shingles at the age of 5 - he had complained about pain for a good few days before the rash appeared, but even then, I didn't think it could be shingles. You can get it VERY young

Would I right saying you guys are based in th the US?

In UK the when a child gets chickenpox you more b less seek that child out do yours gets it lol.

When my daughter get pox last year (she was 5) I did everything I could so my 2 yr old got them as well.

It's very much encourage for kids to get them so they can build up a resistance in order to help lessen the impact of shingles if they do get it later on in life.

As much as the NHS gets bad press at times, the are very proactive in prevention.

Rob:

The kicker is that the varicella is only good for 10 years, so those chicken-poxless people are going to have to keep up the immunization. If they don't, they risk getting chicken pox as an adult, (especially if they go to the UK). And you're right, I think we are going to see more shingles. I think they should have left well enough alone with that one.

You can't get shingles from chicken pox, so luckily that's a one way street.

Alison - poor kid having shingles so young! Wow. My kids were 8, 11 and 13 when they got chicken pox, really late.

Ghost - yes, we're in the U.S. where immunizations run rampant.

I nearly died from chickenpox as an infant. We were in the middle of a move and I guess my mother didn't notice how sick I was until the convulsions started.

And I do believe that an adult can get shingles from a child with chickenpox. Worked with a woman who had that happen. It is something that is never far from my thoughts--don't want that. It was what finally did my elderly mother in--she got shingles at 95, had no experience with pain medication beyond OTC and the narcotics totally wiped her out and she was bed ridden from then on.

Had been thinking I'd spring for the vaccine, but glad to have found out here that it is probably a no-no for me. Doubt my healthcare provider would have know that, either, as they are clueless about ITP there, too.

I am a believer that too many immunizations are a bad things. There are cases where letting nature take its course and building up a natural resistance is the best option.

You can get the shingles vaccination in the uk but only if they believe it is warranted.

Can chickenpox and shingles be harmful, of course, like anything however I do believe it is very rare for either of these to cause long standing damage.

I had chickenpox as kid and it was quite severe, however I got over it and when I contracted shingles later on in life, I was a teenager, yeah it hurt like hell but I was over it fairly quickly with no issues.

I do not know anybody who has had chickenpox as a kid and then shingles later on ever to have any long standing issues.

I know many doctors believe that it is better to get chickenpox as a kid, in fact some will encourage to get your kids to play with those with chickenpox so they get themselves, as it helps build a natural resistance to shingles.

It's nice that I got over shingles the 2x I had it without any lasting problems. It's nice that you Ghost don't know anyone who has had long standing issues from shingles. However I know too many people who have had shingles and have had complications such as lasting nerve pain and live in hell. My husbands uncle never did recover from the nerve pain - had it for years and years and went to his grave with it. My friend had shingles just above her eye, thankfully no optic nerve damage but she was watched for a long time because of that

I'd vaccinate my sons against chicken pox if they were born now - I'd get the shingles vaccination if I could [believe me 2 times having shingles is 2 times too many].

And I'm not sure about a natural resistance to shingles from playing with kids who have chicken pox. I had chicken pox, I had sons with chicken pox, I was with nieces/nephews who had chicken pox, babysat children with chicken pox and I still came down with shingles - no natural resistance there.

My understanding is Canada and Australia also immunize against chicken pox, not just the US.

Know all this is a personal thing - just giving my opinion.

Oh yeah it is all down to personal preference and our experiences that determine what we do.

As for natural resistance, its not so much as you will not get shingles, is that if you do, the impact is a lot less and your body is able to recover much better.

The weird thing about shingles is that according to my immunologist is that you will only get shingles if you have some kind of underlying auto immune precondition.

I was quite surprised when she told me this as it was the first I have ever heard of it and she did state that she was part of small project that is investigating people who contract shingles to see if they can find any underlying auto immune condition.

Will be interesting to see if anything comes from this.

What your immunologist said Ghost is interesting - obviously I have an autoimmune condition, but the friends I know who had it don't have an autoimmune disorder and one has not popped up for any of them yet. Hmmmmm.

Yeah, will be interesting to see if anything comes of the project.

Just know I really don't care to get shingles for a 3rd time!

My Mom had shingles with no autoimmune disorder, however, she was on chemo and high dose Prednisone for lymphoma. People without any underlying conditions can get shingles, but people with underlying conditions are much more susceptible. Also, the elderly are more at risk because people lose immunity as they age.

People can and do have lasting problems from shingles. I am one of them, if you want to count loss of muscle. It's been almost a year and I don't have full use of my hand back yet.

When I was diagnosed with ITP almost two years ago my b12 was low and my ferritin. I took the injections for b12 but recently stopped it to see if my levels go back down. I don't have anyone in my family with auto immune disorders. When I was diagnosed with ITP during my pregnancy my levels never dropped below 90. A year after delivery I took a tetanus booster and my levels have been low since. I'm now on prednisone 20 mg/ day. Since jan 2014. When I taper down to about 2.5 my counts drop. The hema wants me to take rutixan but I have declined because I have protein in my urine. The nephrologist wants to do. Kidney biopsy in June.