What might be wrong with my daughter...

[Kyle]

I don't know what the approval process is for vaccines. But it was approved. It has been used hundreds of thousands if not millions of times.

You're saying that it shouldn't be used unless you can prove it doesn't cause auto immune conditions. But again, that's not how science works. You can't ask someone to prove a negative. I agree with you that if there's scientific evidence that it has serious and dramatic side effects, then we need to have the discussion of the cost-benefit analysis of using the vaccine. But you can't show me any evidence of that.

[Zen]

What I would like to see done is to have the girls who are having problems that are suspected to be associated with the vaccine treated fairly and not dismissed out of hand. I would also like to see genetic testing done on them to see if there are common genetic markers that might indicate some sort of predisposition that could be used as a screening tool to determine individuals who might be at risk of adverse effects from not only this vaccine but others like it, because I don't think it is the gardasil vaccine per say that is necessarily the problem, but a group of people who's immune systems should not be messed with in this manner without some way to protect them. I would like to see some real science done, not have the concerns of parents, health professionals, and young women dismissed because the vaccine has been deemed safe enough in the clinical trials.

Vaccines are purposefully tampering with a person's immune system. It makes sense to be concerned that people with predispositions to autoimmune disease might have adverse reactions to them. In the literature about POTS, (which evidently if far more common than anyone would have thought, especially considering most people have never heard of it. Possibly as common as 1 in 100 people have suffered from it at some point) it lists immunizations as a common trigger for the disorder. It does not specify any particular immunization, just immunizations IN GENERAL. It also list infections, accidents, major stressful events... the same type of things that can be trigger events for any autoimmune disease, fibromyalgia, chronic fatigue syndrome, and any number of other poorly understood disorders that tend to afflict people when they are weakened by life in some way. Since there are at least SOME known genetic markers out there, it would be a valuable study to get genetic testing done on some of these young women who seem to have had reactions to the vaccine and see if, perhaps, they do have the predisposition to one or more of the known autoimmune disorders that we know about. Then, perhaps, they could do a study where they do genetic testing on a group of people prior to having the vaccine and see if similar adverse reactions occur for the girls who have the same predispositions in the same time frame after the vaccination. This would still not PROVE that the vaccination was responsible for anything, but it might suggest additional advisories for people with a family history of autoimmune disease.

I did read something that supports this idea more over the weekend. Evidently the documentation I was looking at is not the most recent patient insert data for Gardasil 9. I saw posts that mentioned patient inserts claiming a 3.3% rate of autoimmune disease incidence in Gardasil 9 with a clinical trial pool of 100,000. Their older "saline and AAHS control" studies that I looked up from the original Gardasil trials had a rate of 2.2%. So even if that is "similarly small" it is still an increase, and with a large sample size. We are basically looking at an increase of about 1% in the Gardasil 9 trial pool in autoimmune disease rate over that of the only reported control population I have seen reported by Merck. That is about the same increase in the reported incidence of Headache, Nausea, and Dizziness that was reported in the 1 controlled study in the prescribing information for Gardasil 9, and those symptoms are listed in the common side-effects given to patients.

In this particular case, we are talking about a vaccine against a wide spread virus that causes an extremely rare form of cancer that impacts a very small number of people per year. Yes, it is nice to save a few thousand lives per year, but it is also important to not injure people in the process. There seem to be a lot of women who perceive themselves as having been injured that are being ignored. That is NEVER good, and happens far too often with illnesses that are poorly understood.

[Kyle]

[Zen]

My wife brought up another important part of the puzzle last night that she thinks is an important part of the problem. In 1986, the US government made it impossible to sue the makers of vaccines for injuries caused as a result of injuries caused as a result of receiving the vaccine because the vaccine was administer with your informed consent and in the best interest of you health. Therefore, the drug companies can cut corners more on safety testing for vaccines.

Regardless of the current usage of the vaccine, the clinical trial data that I have found for Gardasil 9 in the published material in the prescribing information is pathetic. There is only one, extremely poorly done, controlled study (where the study was done at injection 2 and some of the participants did not return due to adverse reactions to injection 1), and nothing that looks at impact beyond 15 days. This a a series of three injections over an extended period of time, yet they don't have research showing the impact of the medicine over even the course of the full injection sequence? That just doesn't make sense.

But yes, I think the bigger problem is the fact that too many diseases, and far too often ones that impact primarily women, are under researched, under acknowledged, and ignored by the medical establishment. (It is kind of strange how many of these diseases I have, but my daughter keeps telling me that I am a teenage girl stuck in a middle aged man's body... "Dad... you're fangirling again!") The problem I'm seeing with this vaccine is that it is these types of things that people are complaining about that are not being taken seriously by the drug company or by the medical (industrial) establishment.

One thing that I just can't get out of my mind... If they have not long term studies, then why does the patient information say to contact your doctor even if the symptoms are concerning you months after your injection? There must be some reason that they put that out there. Oh, and actually, I said that I did the bolding on that... actually, that was wrong... That entire sentence should have been in bold print! I copied it wrong! Generally companies don't put out warnings that they are not forced to put out. You know, thinks like "Warning, this is hot" on the McDonald's coffee mug. DUH! It is hot coffee? Why to you have to put that? Because it caused a problem at some point... I would just like to know what they aren't telling us that made them put that on there...

[Kyle]

I hear everything you're saying, Zen- but are you calling for us to stop using the vaccine?

[Zen]

No, I'm not calling for them to stop using it, just for them to do more research, and more rigorous research, on side effects and, in particular, classifications of individuals who may want to consider not receiving the vaccine. They already have a few such classifications (certain allergies that I don't recall off the top of my head, etc...) More rigorous research into cases of POTS in particular, and potential autoimmune complications as well, would go a long way toward making people actually TRUST them. And THAT is the biggest problem with the whole thing. People have stopped trusting that the drug industry has their best interests at heart.

Look at the massively aggressive and, frankly, offensive, advertising campaign for Gardasil. It pretty much made you feel like not getting the vaccine was tantamount saying, "Yes, give my daughter cancer NOW, please!" They used every bit of pathos they could wring out of the topic to make sure that they sold as much of their product as possible. At least that is how it came across. Saturation marketing. (Not quite as offensive as Bob Dole doing ads for viagra... that is just a picture I never needed in my head, thank you very much... Sure, I'm sure that somewhere in my mind I was aware that he had sex, but I really didn't need to think about it while watching TV. But anyway...)

I personally would encourage people with a family history of autoimmune disease to think twice about the vaccine. (My family definitely counts. My Aunt had Graves disease, which is the opposite type of thyroid disorder to my daughter's, and while none of my conditions are auto-immune, many of them are highly correlated with autoimmune diseases and, some day, I expect they will find out the fibromyalgia is actually some sort of autoimmune disease. I have long suspected that my mother had serum negative rheumatoid arthritis as well, but there is no way to prove that. (She died of pulmonary fibrosis, which is sometimes a complication of rheumatoid arthritis. There was no real explanation for why she had it.)

bur anyway....

On a side note: Something else my wife reminded me of... When my daughter had the reaction to the chicken pox vaccine and actually got chicken pox from it, we were on vacation in Indianapolis, visiting Stan, when she broke out. We called the doctor back in Champaign and asked if there was a possibility that this had something to do with the vaccine or if we should take her to the hospital. They informed us that there was nothing to worry about and that 1 in 5 children actually get chicken pox after receiving the vaccine, but it was a non-communicable version of the disease... At that point my wife almost went ballistic at them... It isn't that she would have refused the vaccine, but she wouldn't have gotten it the day before we went on VACATION!!!!! The last thing you want is to take a kid on vacation and have them get sick! That just sucks for them and you! They never told us that there was a 20% chance of her getting chicken pox from the vaccine before we got it and it wasn't in the handouts. I'm sure it was in the doctor's information, but not the patient information. (I was wrong about the rarity... I had forgotten that part. My wife has a better memory for this type of thing.) (Our son had never had the vaccine because he had the actual disease before he was old enough for the vaccine... so she was our first experience with that vaccine.)

[Elle]

I have nothing to contribute to the Gardasil issue but I am up on the chickenpox issue, and what your nurse said was totally different from what my pediatrician told us. I mean, how frustrating is it that nobody even gives you facts before you decide to do this prior to a vacation? (Or anything else! Argh!!!) We went in depth on this chickenpox one because I had questions when it came out. My dad had a very severe, dangerous, hospital-stay version of chickenpox after not getting it as a child, and at the time varicella vaccine came out with my first kid, they were saying it would only grant you immunity until your 20s! So I wanted to know why it was better to get the vaccine than the actual chicken pox, given that risk later in life. The doctor had all sorts of research to share, but the point is, I was told that only 5% of people develop any sort of rash, not 20%, but that it IS potentially contagious! They said if you do see the rash, quarantine the kid accordingly, but it's likely to be a mild case. More recently, my pediatrician's office gives MMR and Varicella separately because the combined one makes it more likely you'll get a rash.

This is why it's so frustrating for lay people, you know? Because one doctor says x and another says y, and the nurse has z, p, and q to offer, and you have no idea which expert is the one you ought to listen to! And I don't have all day and night to research things, and even if I did, we quickly get into areas where it matters that they've had years of training. I don't know how to really interpret studies in context or grasp what they mean. Sorry to vent but it comes up in lots of issues now - any time a family member gets sick, you end up going through this stuff when you reach the Unanswered Questions place (i.e. right away), and answers are few. My mom has one rare condition that I still haven't the slightest freaking clue about. Basically all we got was a diagnosis, twice, and then... nothing further to help! No treatment, no answers, no explanations. It would be so enormously helpful if we could piece together which symptoms might be caused by it or what we should keep an eye out for next. And you know, I might like to know for selfish reasons too, since odds are high that one of my kids or I might enjoy it too. But all we have is this vague idea, well, if something weird happens, keep in the back of your mind that you might have weird condition x! Yay! Okay, this is no longer topical; I'm exhausted and can't help it. Rough day.

[Mike]

And that's why we shouldn't trust science.

Which I'm being facetious about, but the point is that it is THIS feeling that leads people to decide that science is mostly a matter of belief.

[Elle]

OK sorry, I'm not done. What was said above in the thread also really hits home with me because my mom has a lot of weird health situations that are Most Definitely Not in her mind. But she experienced the symptoms YEARS before getting a diagnosis or treatment, and I think it's because she is a really timid, pleasant Midwesterner who treats the doctor as a wise expert, and the wise expert in turn often seems to pat her on the head and send her on her way with a mild clucking sound. And it infuriates me with a black boiling rage when that happens.

One time her problems were being dismissed, dismissed, dismissed, or she was being told nothing could be done, and so I insisted that she go in again and again, long past what seemed "reasonable", until finally it turned out she needed a freaking STENT! Needed a stent. Yet all this time, symptoms poo-poohed. I know my mom, and I know she is incredibly well-attuned to what she hears from her body. She has amazing common sense and intuition, and I trust her judgment. If she says she has a funny feeling in her arm, then she bloody well has a funny feeling worth investigating, and fuck you if you're a doctor and don't take that seriously because LADIES or whatever. They really do treat women like hypochondriacs.

And the same thing happened to me when I had sepsis, though I take partial blame because I did not have TIME for it in my life, and tried to ignore symptoms. But it still happened. The ultrasound lady was like, Oh, My, God, how are you walking around?

[Kyle]

[Zen]

This is going to be a little TL;DR, and maybe a little whiny... and it contains some things that I have never said before yesterday... actually , some things that I have never admitted... out loud... before yesterday... Some that I have NEVER admitted out loud actually. (parts about myself when I was younger...) So, if you don't want to read the whole thing, skip to the TL;DR version at the bottom...

Talking with my wife yesterday, I got another bit of insight into how freaking intelligent my daughter is... (Yes, I am a very, very proud papa. She is the light of my universe and I am well aware of the fact that I am overly proud of her... sue me... ) This, incidentally, adds to my earlier assertion that, even if the vaccine was her trigger, there is no way we could ever really blame anyone other than our own genes for her condition, sadly enough... Evidently, at some point in the past few days, my daughter looked at my wife and said something to the effect of, "So, if this vaccine caused this to happen, why did it only make something I have felt my entire life worse?"

You see... I have been telling my wife that she has fibromyalgia since she was a toddler... I saw the signs... they were there all along... yet, at the same time, she was a dancer. She was strong. She was, pound for pound, the strongest person in the family. She did acrobatic dance and could hold herself, with one hand on each side of the doorway between the kitchen and dining room, with her feet parallel to the ground, for an inordinately long period of time. In gym class when they did the fitness tests and the girls had lower goal numbers than the boys, she took offense to that and she and one of her friends who was in her dance classes would always be the ones to do the most reps, the most laps, the most pull-ups, etc... I had started to forget my early thoughts about the clear warning signs that she would have fibro later in life... But then again, I was like that too...

I danced until 8th grade. In 7th grade I tried to run track. I was the fastest runner in the 440 in the 7th grade, despite the fact that I was the shortest kid on the team. However, I was taking 3 dance classes a week and that combined with track practice 5 days after school was pure torture. Track and dance use totally different muscle groups and I hurt, EVERYWHERE. I thought that everyone hurt like that. Now I wonder if that was the case. Eventually, I was assigned to a relay team with the 8th graders because of an injury to one of them, but then dropped before the meet because the 8th grader was able to come back in time. There wasn't time to add me to the individual event, so i missed the first meet. That pissed me off a lot. The next week I got the flu and I missed the whole week of school. I never went back to track practice... I always said it was because of the meet, but in reality it was because of the pain I think.

Then came 8th grade. That was the year that I twisted my right ankle three times... The third time was the first day back in gym class, playing the same game that I had twisted it playing the last time, in the exact same situation: I went for the ball, the ankle buckled. But this time I hit the back of the knee of the kid defending me and he fell back, right on top of me... All of the tendons and ligaments went. I was on crutches for about 8 weeks. At the end of the year I performed in the dance recital and made the decision to quit dance. I wanted to concentrate on choir and theater in high school and didn't want to have to work around multiple dance classes per week. Once again, I think that deep down, it was probably the pain that was really what made me stop... Dance just hurt too much to keep going, especially at the beginning of the year after taking the summer off. (That was one advantage my daughter had. Her dance studio had summer classes so she didn't de-condition over the summer...)

It was a similar path in a lot of ways. It's just that my "trigger" event came much later in life. I had aches and pains all along. I started having stomach problems in college. They called IBS because they couldn't find anything wrong. Now I think it might be a gluten intolerance, but I'm still not sure... I also developed bursitis in my right shoulder. (It is a nice genetic thing that I got from my mother. Her mother had it, her sister got it in her wrist instead, my sister has it, my cousin has it too, and my son seems to be developing it too. It has to do with a muscle defect near the shoulder blade. Gotta love those genes!) I always had sleep problems. Waking up refreshed is not something that happens. In my early twenties I complained to my doctor about pain in my hands and fatigue issues. He said that if I was 15 years older he wouldn't be too surprised, but it was a bit odd for someone as young as me. He gave me vitamin shots for the fatigue. (Let me tell you that vitamin shots are one of the weirdest experiences I have EVER had! He warned me about it ahead of time and it was still freaky. You see, they give you the shot in your gluteus maximus, and you taste the vitamins in the back of your throat! I really DON'T want to know what the connection is between the muscles in my butt and taste buds, thank you very much!)

My trigger event was when my mother died. I know that I had issues before that. I know that I had been having sleep issues for a long time and I have lots of questions about whether I could have finished graduate school if I didn't have these conditions... (I have always said that I quit because I didn't enjoy the research anymore and I was tired of the "tiny little manipulations" used to make a new experiment with absolutely no theoretical implications so you could make it in the publish or perish academic environment. But I have finally admitted to myself that I also was pathetically uninspired. I couldn't think of original research. All I could think of were those minor changes to other people's work. I was creatively bankrupt and, as my mother always pointed out, I was the creative one... Regardless of the fact that I had entered a scientific field, it still required a creative mind to come up with original research ideas and I was tapped out. I also did it to save my marriage... and that barely worked. My wife was just about ready to leave me by the time graduate school was done breaking my psyche down into its component parts and leaving me, most nights, sitting on the sofa, in the dark, with a 5-disc cd changer on shuffle playing 4 Dire Straits CDs and Steely Dan's greatest hits, drinking a glass of single malt scotch, neat. I was not at a good place...)

But it was after my mother died that I began having full disease symptoms. Chronic pain in all four quadrants of the body, fatigue that left me marginally functional in the late afternoon, insomnia, periodic times when I would have memory or cognitive problems where I just couldn't function at the level that I was accustomed to... It took years of this before I actually got diagnosed though. For one thing, the sleep issues were one of the big things and I had small children. My wife and I talked about it and she told me that any doctor would look at me and point at the baby and say, "There's your sleep disorder!" And they would have been right with the first one! He was a nightmare! It is lucky for him that he had a father who functions with no sleep on a regular basis, otherwise I don't know what would have happened... LOL

When my daughter was 2 or 3, interestingly, about 15 years after I had first complained about these type of symptoms to the other doctor... I finally requested both a sleep study and an appointment with a rheumatologist. I had convinced myself, partially because of what my mother had died of, but also because of my symptoms, that I had rheumatoid arthritis. The rheumatologist examined me and determined that I had fibromyalgia. The exam for fibromyalgia was one of the most disconcerting experiences I have ever had. She started poking me and asking if it hurt. These were light pokes, the kind that shouldn't hurt, but everywhere she touched me DID hurt, sometime a LOT. By the time she was half way through my brain was freaking out, thinking "STOP! Why are you hurting me like this? Why does that hurt? WTF is going on here?!?!?!??! At the end of the tender point examination, as I now know it is called, of which I scored a perfect 18 of 18 tender points causing pain, she said, dismissively, "You have fibromyalgia, you primary doctor can take care of that..." and I basically felt... dismissed. No explanation of what fibro was. No hand-outs if I remember correctly. I had to go home and search for it on the internet. She basically was saying, "You're not my patient... LEAVE!" (Incidentally, that night I had my sleep study, so I didn't really have very much time to search for stuff about fibro before I had to go get my sleep study done...)

Luckily my primary care physician is more well versed in dealing with fibromyalgia and does consider it a real disease. We have worked together to manage it as well as we can over the years and I am still able to work.

So, anyway... It is clear that my daughter has put two-and-two together and realized that, even if she was triggered by the vaccine, she had the building blocks for this underlying condition laying in wait all along. Next week when we move her into her dorm room, I plan to have a talk with her about how these types of diseases work and triggers so she understands what is going on. I'll explain how mine was triggered when my mom died, but had been building during grad school as well... Stress is a bitch... She also insisted that we order genetic testing so we can find out what known predispositions she has to any currently known autoimmune or other diseases. We did send her to the top school for Mathematics and Science in the state... She wants, and respects, the science, even if she is really there for the math... We got two so I can get tested as well. (My wife wants to find out how respected the testing company is by the doctors prior to getting herself and my son tested. It is a reasonably priced place, about $200 per test. If they come up with positive results and the doctors don't respect the tests, though, we might spring for the Mayo clinic $2000 version for our daughter. If she has markers for other autoimmune diseases she really should know, since you are at higher risk once you have one autoimmune disease...)

TL;DR: My daughter realizes that she has had warning signs of this type of disease for most of her life and I need to explain to her how autoimmune (and similar) diseases work with triggers and such so she gets what happened and understands how she went from feeling a little bit like this to feeling so bad all the time... Luckily? for her, she has me, who has gone through the process, and we're about to take a two day trip together to move her into her dorm room... Nice bonding time...

EDIT: Thanks Kyle - I agree. I also learned a lot and your questions spurred me to improve my research. I can always count on NPR to help with that! You guys are THE BEST! (And you know it!)

[Kyle]

Dude- thanks for sharing. I really did enjoy this debate and I really, really like the fact that we proved that people can have a civil debate where everyone comes out better off for the discussion. Thanks, man.

[Zen]

Oh, and the other thing that I found out that I don't recall if I mentioned is that, after she saw the chiropractor on her way to Michigan last week and he did an "adjustment" on her neck, my daughter has NOT had a headache since! She spent the better part of the last year with daily migraines and was taking medication that was most likely exacerbating her depression issues. (Which she HAS been having, and rightly so... Anyone who has had the year she has SHOULD be depressed and we have reinforced this with her time and again that it is normal for her to feel this way. Not being depressed about a life changing illness would be a sign of some sort of instability. Being depressed about it is normal. What she needs is to talk it out with a counselor and to come to terms with it in her own way.) So, she has had a week and a half of headache free existence and several days of that were either on a long, boring car trip or living in the same house as my mother-in-law, which is something that is almost guaranteed to give ANYONE a headache! (Did I say that out loud?)