Many questions Aplastic Anemia

[used to scuba dive]

I have aplastic amnemia..Have trouble sleeping wake up early. My tongue is always white..like it loses color. I had low blood work all three counts in April 2007. This was repeated and they have run tons of bloodwork, Two bone marrow biopsy. I will go in the hospital in a few weeks for ATG. I am wondering what caused this? I was always very healthy..just turned 53. The only thing I did that was any different this year was to get the HEp B shots? Blood work was good before but bad after. Is there any relationship? I have been a nervous wreck and have little support.

[Jbsx19]

Dear Scuba,

Hi! As a fellow AA patient just wanted to say Hi and offer any advice of help that I can. I know how frustrated you are and angry,too at not knowing the cause of this. Believe me!! You probably will never get a difinitive answer as only 20% of cases are genetic and the rest catagorized as" ukn cause" or spontaneous. You can guess or surmize but noone will tell..yes this caused it..could be chemical exposure,drugs,environmental,etc...etc... ANyway,.hope you go to the www.NIH.gov website and read,read,read and the AAMDS website and sign up. The more cases recorded the better chance of putting together the pieces of the puzzle of this one in 2 million disease.

Contact me anytime for support,help or just to talk. This message board is wonderful and I just found it myself last week and I was diagnosed 4 years ago!!!

Keep your chin up,

Judi

[Connie]

Hi. I am remission for AA, I guess. So far, so good. I was thinking about the Hep. B shots you had. Some speculate that could possibly be a cause of AA, along with many other possibilities. Beneze seems to top the list. That along with a virus. Which one, has never been specified it seems. Don't drive youself crazy trying to figure it out though. But as suggested, best to register with AA-MDS to help figure this disease out.
Also, by what I gather, most AA people were very healthy before diagnosis. Strange, but that is how it seems.
I took ATG for a very short remission. After that, I took ALG with a much longer remission. It isn't easy, but it is worth it.
Oh, you can also try www.aplasticcentral.com as another helpful site.
Good luck!
Connie

[used to scuba dive]

Thanks for the reply as I am looking for input and various ideas and learning alot. This is all new to me. Will go in hospital in two weeks for ATG.
I am trying to have a postive attitude and focus on what I can do.
Thanks, Scuba

[skoopman]

Your user name caught my attention since I am a scuba diver as well I am sorry to hear about your AA diagnosis. I know several people who think there is a link between vaccines (specifically Hep) and AA. I am not going to start a vaccination debate but wanted to answer that question.

Connie said that viruses are sometimes the cause of AA. They think my daughter's AA was caused by Fifths Disease (Parvovirus B19, not the parvo that dogs get) also called "slapped cheek disease". It is really common in kids and ran through her preschool at the right time period. She never showed symptoms but they think that was probably the main event in causing her marrow to fail. I will never know and honstly, unless it was caused by something she did or was exposed to consistently (it wasn't) then it doesn't matter to me.

I hope the ATG goes well for you and puts you into remission quickly.

Suzanne

[Wendy Beltrami]

Well, everyone reading your initial post probably thought to themselves... Uh oh... this is going to set Wendy off on a tirade!

LOOOOOOONG story short- Yes, I do think that your Hep B vaccine was probably connected to the onset of your disease. I also believe that it was the trigger for my son's disease nearly 9 years ago. There are probably 20-30 others that I have met through the AAMDS listserv and also in person at AAMDS Patient and Family conferences over the years that have suspected the Hep B vaccine played a role in their disease.

I have disussed this with every hematologist I've ever met or that has treated my son and the answer is always the same... Yes it's possible/probable but difficult to prove. I can begin my rant here but will try to make it brief since most of you have heard it before.
I am very bitter that this vaccine is "required" for all newborns (1st dose administered now prior to them leaving the hospital at birth). My son got it when he was 6- it was "new" and our school district "required" it. I rushed out to comply with the rules, being very DUMB and trusting that this would be the best thing for my child.
The recommendation that I want to give to all parents/adults is to ASK WHY this vaccine (or any vaccine for that matter) is needed.
I am sick that I rushed out to vaccinate my children against a disease that they had ZERO chance of getting and exposed them to potential side effects like life threatening marrow diseases. Hep B is sexually transmitted. The people at risk are illegal IV drug users, prostitutes, or others that are sexually active. Not my second grader or newborn babies born to mothers who do not have Hep B. The "at risk" population is not one likely to come in and be vaccinated, so the powers that be decided to just vaccinate everyone else. This is known as "herd immunity".
I know some people are at risk- those who work in public service/health care, sexually active not in a monogamous relationship, etc. but my kids were not at risk. period.
It was a real education when I first began looking into this. I think something like 43 of the 50 states allow you to opt out of vaccines of any kind for various reasons- religious, medical and philosophical. A school cannot deny your child's admission for lack of vaccines. I would guess that most people are not aware of this and think that they MUST in order for their child to attend school.
Don't get me wrong, I am not anti vaccine. However, the risks vs benefit must be weighed individually for EACH person AND EACH vaccine. Buyer beware- especially the new vaccines.
Consider this: the Oral Polio Vaccine (OPV) was given for.... what, nearly 50 years? (remember the sugar cube? the little drops in your babies mouth?) Did everyone know that they don't give that one any more? Why? Well, after all these years, the CDC decided that too many people were actually GETTING POLIO from the vaccine. It was a live virus. So, now, babies once again are getting the original Salk killed virus vaccine which is injected. Great- it only tood 50 years of bad side effects! Wow!
Second example: Rotashield vaccine for infant diarrhea. Taken off the market after only one year and a million doses given due to a serious side effect of bowel intussusception and death. Six years later they bring out a new one (RotaTeq) and within months, it is also being questioned. Not saying that infant diarrhea is not a very serious issue, but lining up for a new vaccine is no longer my idea of "peace of mind".
I'm so glad I don't have a daughter and be put in the position to make the decision about whether to give her the new HPV "Gardasil" vaccine.

I think I've already shared about the decision we made about our older son who was a freshman in college last year. The new meningitis vaccine is recommended for "freshmen in college living in dorms". Well, that fit his description perfectly. However, I did a little investigating and am so glad that I did. He is attending college in Oregon, the only state where, unlike the rest of the country, 66% of the cases of meningitis are type B, which is not covered by the vaccine. Therefore, the risks do not outweigh the benefit of getting the vaccine. We were able to make an EDUCATED choice about this vaccine. DO YOUR HOMEWORK.

Ahhhhhh..... off my soapbox.
Anyhow, FYI, my son went 7 years without transfusions. Although he is now transfusion dependent on platelets and rbcs, his quality of life is good.

I caution you about getting other vaccines now that your body is already compromised. Good luck to you

Thanks for listening.
Wendy/mom to Grant
dx 12/4/98 AA
List of what we've tried over the years:
ATG rabbit
ATG horse
cyclosporine
mycophenolate
danazol
zenapax (daclizumab)
prograf (tacrolimus)

[used to scuba dive]

My school system offerred it for free and I was told it was a good idea..Sorry I did it now may have wrecked my life. I did a report online to CDC. They give no feed back. i really should not have gotten the shot as I am not in any of the risk groups. Wished I never did as blood work was good the week before the first shot and bad after. That should be some kind of evidence.

[Debbie S]

Hi, I have been reading about suspected links between Hep B shots and AA. I can tell you my doctor Ron Paquette at UCLA is sure my AA was caused by my seizure medication tegretol (carbamapizine). I am devestated that a medicine I needed so desperately has almost killed me. I now am tranfusion dependent and my platelets rarely go above 29-30 and I need blood bever month. I guess I'll just have to learn to live with it. Debbie S

[theresasc]

Your asking the wrong question!
The body (all or part) is know as the greatest computer ever built/created.
And, the term we in the computer world use is simple.
Garbage in garbage out.
So you start with the garbage.
The bodies G I tract from the time you open your month
to the other end is critical.
When code is input wrong an error message appears,
that program or part of it is waiting for a correction.
most people see the message on the screen and close that part of the program but the computer continues to work doesn't it. It takes a lot
to shut a human body down; but it still continues to function.
The real question is, Where is the right information!
Think about the following for a minute.
I don't brush my teeth. +30 years
I don't have cavities. wait a minute! why not, The dentist say if you don't
do-etc. you will get cavities. Corner a dentist put some truth serum
in him and he knows the real answer. I know because I keep looking and found "the right information". A computer has many programs that are all linked together- found out what really causes cavities and follow that path down the GI tract and found the other codes the need correcting.
The ONE straw that broke the camels back wasn't the problem!
Remember the FDA controls what a doctor can say it's what they can't tell you that you can find OUT SIDE THE BOX.

[Susan]

Hi Scuba,

Have you had the ATG yet? I hope you got through it without too much discomfort. To give a different view point, the vast majority of peopel who get Hep vaccines to not develop AA. Many of us AA patients are apparently hypersentitive to various meds, pesticides, and other chemicals. We are like the frog species which mutates more easily than other species and thereby sends out a warning that the envirnment is too polluted.

The AAMDS staff emphasizes that now we are sick it is best to just concentrate on taking good care of ourselves and not stressing out, worrying about how we got AA.

suz