Wednesday, May 28, 2008

Why Isn't There A Vaccine for Parvovirus?

There's a lot of people who question some or all the vaccines routinely recommended for babies and young children.

The chicken pox vaccine is especially held up for ridicule because it's considered such a mild childhood illness. Except, of course, for those who get it in adulthood, or for the tiny minority of adults and children who suffer permanent effects or even die from the disease.

My siblings and I all escaped the chicken pox during childhood. I don't know how. My mother used to theorize that perhaps we had some sort of natural immunity to it, since there were three of us, or had had such mild cases of it as children that it passed unnoticed.

I remember at least two different school years when my desk was surrounded by a circle of empty seats of kids who were out sick with chicken pox. I still don't know how I avoided it back then, and for a long time accepted my mother's theory.

But then my sister came down with chicken pox in her late 20s or early 30s. (Sorry, Sharon! I can't remember if I was still in college when you had them or if Becca was already born!)

In the early 1990s, two of my co-workers at the Charleston, W.Va., AP bureau came down with chicken pox. There's up to a 21-day incubation, and the second woman to get the chicken pox broke out itching on the 21st day. Which essentially means I had sympathetic itching for 42 days as I waited to see if I would develop chicken pox. (After all, when the second woman left the office sick with what turned out to the pox, I got shuffled over to her desk, using her keyboard and telephone that were probably covered with her germs. I can't believe I didn't catch it then either.)

Then, while waiting for a prescription at a Wal-Mart pharmacy in 1995 or so, I noticed a list of vaccinations required for children entering kindergarten mentioned a chicken pox vaccine. I immediately requested it from my doctor. But I never was tested to see if I had developed immunity from it.

Then in 2001, on the eve of a fancy reception in Brazil to celebrate his wedding, my brother broke out with chicken pox at the age of 39. They decided to warn all the guests but to go ahead with the party anyway. I made sure not to embrace Mitch, but I wasn't too worried because, after all, I'd had that vaccine. I was immune!

Yeah, well, then came 2003 when I went to the OB for a "pre-conception" visit. As is customary, she went ahead and tested me for immunity to measles and rubella. But when I mentioned I'd never had chicken pox either, she decided to test me for immunity to that too. And guess what? I had none. So I had to go get the chicken pox vaccine again because it can be dangerous if you come down with it during the first trimester, and was told that we had to wait 90 days after the vaccine before trying to conceive. (I then got tested and finally was told that, yes, I was immune to chicken pox. At least for awhile, since they don't know how long the vaccine lasts.)

Anyway, I guess that's a big, long digression about how I'm 41 and I've never had the chicken pox. And I don't want them. And I'd rather that my 3-year-old never have to have them either. Some of the moms I know talk about attending chicken pox parties, where you expose a group of kids at once, but not me. Ellie got that vaccine at 15 months. And if she needs a booster in a few years, well, she'll get that too.

Because even though the vast majority of people, especially children, who come down with chicken pox recover with just a few scars from where they couldn't resist scratching, there is a real danger to the disease. Even kids can die of strokes, develop encephalitis, meningitis, Reye Syndrome or very serious pneumonia, and there's even a risk of that "flesh-eating bacteria" that the media love to write about.

So "they" came up with a vaccine. Even though the risk of serious side effects from chicken pox is rare, scientists worked for years to develop a vaccine. And reports say that chicken pox, and its rare but serious side effects, has greatly diminished since the availability of the vaccine.

So why isn't there a vaccine for parvovirus? Nor, as far as I've been able to discover through online research, any serious work being done on it?

Like chicken pox, it's thought to be a very mild childhood disease. But parvovirus also can have serious side effects.

There's documented cases of parvovirus causing infections of the lining of the heart that can be, and have been, fatal. There's also evidence that parvovirus can attack the kidneys. And for some unknown percentage of people, it appears it can cause a chronic, auto-immune type disease causing disabling fatigue and joint pain and other symptoms.

Thanks to my net.friend, Sherril, I found my way to an online support group for people dealing with parvovirus. It apparently was founded by a woman whose young daughter died from it. The Miranda Mission was named after the little girl, and now offers a place for people trying to get information about the disease, symptoms, treatments and emotional support have a place to go to network.

Some people who still have an acute infection of parvovirus are finding some significant symptom relief from IVIG treatments. But of course it's considered a somewhat experimental treatment and therefore frequently not covered by insurance.

And in my case is probably too late because my last IgM results showed my infection was no longer acute. (Doesn't that mean I should be all better now?!) But thanks to another woman with chronic parvo, I have some medical journal articles to show my doctors about research they didn't seem to know about it. (Another reason to go to to Denver! Her doctor is based in Castle Rock, Colo.)

If a vaccine ever is created for parvovirus, I'm sure there will be plenty of parents who don't see the need to inoculate their children against it. After all, it's a couple days of cold/flu symptoms, followed by a non-itchy rash, and then it's all over. No big deal, right?

I remember that after Ellie appeared to have parvovirus, aka Fifth Disease, (while I was already sick with double pneumonia last year), I sent out an apologetic email to the moms in my playgroup warning them that she was probably contagious the last time we saw them. I was particularly worried about one mom who was in her third trimester of pregnancy.

They all said, "Oh, it's no big deal!" And the pregnant mom checked with her OB despite not being worried and the OB assured her that it would only have been an issue if she were early in her pregnancy. Of course, since then, I've found several reports online of women delivering stillborns after being infected with parvovirus around 35 weeks that the doctors attributed to the parvo. So it may not be a common risk, but even there an OB didn't warn a patient of the possible risk. S/he may not have known about it since there's so little actual research done.

Those women are good friends, and I'm very relieved that none of them or their children got sick from exposure to Ellie or me. But what I read now says that 40 percent of adults who contract parvovirus (and only 50-60 percent of adults are immune from childhood cases, which shocked me) are going to develop severe joint pain lasting anywhere from two to four months. Even that, to me, would be worth avoiding with a vaccine.

Of course, I still don't know for sure that parvovirus is the cause of my lingering illness. But even if it isn't, I think someone out there should be working on a vaccine for this. It's not just a mild childhood rash disease.

Hm. Well that was quite the ramble. Can you tell I'm sleep deprived? I'll have to check back later and decide whether it's even lucid.

The 3-inch memory foam mattress topper is not to blame for my poor sleep last night. It has definitely helped immensely with my pressure points, making it easier for me to sleep longer with less additional pain.

I highly recommend trying it to anyone else who has problems with joint pain from lying in a position too long. Or even anyone who wants to feel like the princess in the story the Princess & the Pea, but without the pea. :) It's only been on the bed a couple days, but I'm totally loving it. And, so far at least, my husband doesn't seem to mind it either. :)

1 comment:

SharonMV said...

hi Aviva,

it seems like you don't make antibodies to the chicken pox virus. This is yet another thing that can happen to people with primary immune deficiencies (like CVID which I have.) You might want to ask yur doctor to test your IG levels -IGA, IGM & IGG. Also the 4 IGG subclasses. this measures the amount of immunoglobulins (IGs) in your blood. You need IGs to make antibodies. Even if your levels are normal, there still could be a functional problem. An immunologist would have to do a vaccine challenge test to rule this out. CVID is quite variable - different people have different antibody deficiencies. And there is often joint pain & inflammation (and fatigue)associated with it.