Junk Science

Lately, in my facebook group, there's been a lot of discussion of "miracle cures" which amount to nothing but junk science. I find this kind of post one of the most insidious and, frankly, mean ways people can post on the boards.

Why do I say that? Where do I get off saying something is junk science? Well, if it has existed for 50+ years and doctors aren't doing it for their patients, there aren't any really solid evidence-based studies... it qualifies, in my book. Especially if there's no logical reason it SHOULD work and do what it says. For example, Ozone Therapy. It's been around for ages and it supposedly super oxygenates your blood and kills all sort of viruses in the body. Ozone does that outside the body, but it certainly seems like a stretch that the ozination of your blood would be particularly helpful.

Here's why, from what I've read: Basically, your blood can carry so much oxygen. The de-oxygenated blood goes to the lungs for a "refill" and is gets something like 95% saturated. If extraordinarily oxygenated blood goes in, it just stays saturated, your body doesn't add more oxygen to it; the lungs don't work that way. So it doesn't go into the veins, it goes into the arteries. So you want to put little airbubbles in your blood stream? The kind of thing that causes those IV pumps to go crazy because it's risky? Yes. That's what these people do. They put thousands of tiny airbubbles straight into your arteries. These bubbles can remain for 30 minutes or more and cause an increased risk for such sunny things as pulmonary embolism.

I understand that people think that the FDA is a racket. In some ways, I agree, but I can get into that more later. The ozone process is not a single manufacturer that is being blocked by big money, though. It's a process. A process which the FDA says is dangerous, and I tend to agree.

There has also been this issue raised of GC-Maf, which is some sort of macrophage activation drug. This I believe that this is a possibility, but the fact that it's obscure and not really active since 2008 tells me it must not have been that productive a breakthrough. I'm sure there will be developments in this area, but right now, I'm not seeing anything particularly convincing. Besides that, my macrophages are fine and having more active ones don't seem like they'd help me all that much. Who knows, though? It remains to be seen.

Missing Out

I know I sometimes rush to judgement about certain things, but I have a hard time not doing that, especially when it comes to kids with PIDD.

As an adult with CVID, I take a lot of calculated risks in order to live a full life and do the things I want to do. It fills me with sadness when parents of CVID kids limit the fairly innocuous things they do. For example, someone in an online support forum decided not to let their child in the bouncy house because she didn't know how often they clean it. The jumpy house isn't the problem, in my mind, the other kids inside would be. With handwashing and everything the kid will be fine. I understand that parents feel the need to be protective, but to shut your child inside and not allow them to experience the world is a huge mistake.

In some respects, knowing my mom, I'm glad I wasn't diagnosed until later. Mom still has never tried to dissuade me from doing the things I want to do. I missed my grandmother's last 2 Christmases because of different active germs in my parents' house, so it's not like I'm cavalier about the risks. I didn't want C-Diff or Shingles because those can last a very long time in patients like me and have devastating consequences. If there was some sort of MRSA scare or something, maybe I'd be understanding, but to just tell a child "you have this thing, therefore you can't have fun" is just cruel to me. I believe it will lead to further resentment both of the illness and the parents, and will not teach the child that it's ok to live.

They don't keep CVID patients in a bubble and never have. I don't think there's a real reward to living that way, especially for children. Just teach them to wash their hands and to not touch their faces in public, and let the Ig replacement do its work.

Vaccine Infographic

I think the above portion (click to enlarge) of the infographic found here is rather telling. Parents who vaccinate feel that parents who don't are depending on them for the health of their child. Nonvaccinators also don't see the risks in not vaccinating their kids, which is frightening to me, especially given the rise in preventable death from things like whooping cough, measles, etc. I get vaccines even though they are totally useless for me. Vaccines are safe and are definitely safer than measles, mumps, polio, whooping cough, tetanus, etc. If you can't fathom that a healthy child is more important than you having control, perhaps you should seek therapy.... after getting your child immunized. And yes, I judge you for not getting your child vaccinated.

Mortality

A very public advocate for PIDD issues passed away on October 6th. She had the same immune deficiency, diagnosed the exact same time age-wise (she's about 15ish years older), and seeing the same immunology practice.... We even have the same first name.

I don't know how she died, but at the end of June, at the IDF Conference, she looked robust and healthy and seemed full of passion about PIDD issues and the new Affordable Care Act provisions that would help us.

The news of this death hit me pretty hard. I see myself in her shoes and I wonder... is treatment much better for me than for her? What killed her? Will I die in a similar fashion? Who would I want to know? How would I tell them? Being that I live a good deal of my "disease life" online, I have to make sure that there's some way to let them all know when things happen to me. It's scary to think that so many of my friends exist primarily in my virtual world...

That's really beside the point of my post though. Seeing her obituary, seeing the things she's done, I'm proud to say I knew her and we were connected. I'm still frightened because I wonder if I will have a similar expiration date. I hope not.

One of the 99%

I am so glad the young lady who wrote the sign above has had so much good fortune in her life to be able to work a 30 hour a week job at minimum wage and graduate from college debt-free. Good for her. I went to a fancy private school on a full ride that took care of everything. Books, room, board, etc. Something happened while I was in college, though. I was diagnosed with a Primary Immune Deficiency Disease... and nearly every major life choice I've made since has revolved around that illness.

It is good that there are people who are responsible with their money, but to imply that the argument of the 99%ers is just about their being irresponsible is silly. I can be responsible all day and all night, but yet there are unexpected expenses that just come up. I bet this young lady doesn't have to worry about several hundred dollars' worth of medication just for one bout of infection... which will happen several times this winter. Meanwhile, I am on a medication that is causing me to gain weight because it is the best option. So I am going to have to buy new clothes to make sure I can still look professional at my job. I am doing what I can to try not to gain weight, but there really isn't much I CAN do. I save as much as possible, but it's absurd to me that someone would think my financial situation had something to do with my character. It really doesn't.

This woman will never have to take a lower paying job to keep health insurance. Heck, her first job can even not have insurance and she can stay on her parents' policy. I had to take my first job when I did or risk losing insurance entirely... and with a $10k per month plasma habit... that is SO not happening. Oh, and what if you have to pay for one of THOSE out of pocket? Could she do that? I'm going to guess that's a negatory.

So before you judge people for their financially-strapped situation, perhaps you should consider that not everyone has the opportunity to choose the bed they're lying in.

"Not that I'm a doctor or anything..."

That phrase sums up my experience with many doctors, especially young ones. They have this medical-school-induced hubris that gets really annoying... especially when they try and out-jargon you. If a friend reaches out for medical advice for an ailment I know about or have experienced, I will often reply with what works for me. Inevitably, there's a post somewhere in the thread from a friend who is a doctor or a nurse who says essentially the same thing I said, but using medical terminology. I know those words, too, but they aren't particularly helpful in trying to explain to someone how to soothe their bronchitis.

I think I get most annoyed because I probably read a lot more medical literature than many doctors do, especially when it comes to immune system, asthma, and allergies. I read this stuff not only because I'm curious, but also because my life could someday depend on my knowing that a certain drug may induce a certain response in someone like me. It's the most time consuming "hobby" I've ever had.

Every doctor should realize that there are patients out there who do have knowledge and who are very well-versed in their diseases. I've finally got a team of doctors who realizes that I do read the literature and do understand it. It would just be nice if every doctor in every medical advice forum would actually consider that other people have good answers, too. But that would require people to read the whole thread before they comment... and who does THAT?

Deadly Vitamins!

I really wish the scientific community would come out with more concrete information when publishing statistical studies. I want even more for the media who publish such studies to include questioning information.

A great example is this study which links vitamin supplements with an increased mortality rate. There are several problems I have with this. First, I think it's a little muddy to be announcing supplements as dangerous. Many people supplement because they've seen a doctor who has told them to. Perhaps these people have more health problems, which lead them to take the supplements, which could also explain the increase in the mortality rate. I don't think I'm entirely going out on a limb to say I find the correlation to be dubious at best.

I feel as though I am constantly telling people that correlation is not causation, especially when it comes to medical information. Just because it happens to be that way doesn't mean the vitamins are the cause. We just don't know enough yet to scare people out of taking supplements that their doctors have approved or requested them to take. Besides, a 2.4% risk is pretty low anyway.

Bone Marrow Transplants and PIDD

I got in a rather heated discussion on Facebook today about bone marrow transplants . It seems we're talking a great deal about transplants lately. Here's the thing: it's not for the PIDD I have.

How do I know? I've asked every expert I could corner if there was a chance it would work for me. There's basically a greater chance of death than a chance of cure for me. This makes the whole idea of BMT kind of difficult to talk about for me. It is even more difficult when I see people giving information I know to be false to other people to raise their hope.

Fortunately, I think most adult patients realize that this is life. There isn't much escape from the diagnosis, once you have it and it's confirmed. My diagnosis has been confirmed by 3 doctors. The pulmonologist who initially gave me the diagnosis, a Fellow of the Royal Society (the first allergist accepted) who started me on IVIG, and the current group of doctors, lead by the former head of allergic disease at NIH. It's not going away anytime soon.

The folks most vehement about BMT being relevant/good for CVID patients were parents. Some of them have kids with more severe immunodeficiencies who were cured by BMT. Good for them. It's not going to cure the CVID kids and they wouldn't even have the chance unless they have something else requiring BMT. At least that's what the current medical literature states. Maybe there are other doctors who want to risk a patient who could live well for 90 years on a treatment that may kill them. I doubt these are the kinds of physicians you want to see anyway. I guess hope springs eternal, but I hate to see these people get their hopes up about something like this when I know it doesn't work this way.

One mother has a kid who has selective IgA deficiency. Talking about whether her daughter would be a candidate. NO! That's a TERRIBLE idea. All she has to do is take prophylactic antibiotics! I would never dream of risking her life on an experimental BMT. That seems absurd. Gene therapy? Maybe. BMT? Yeah, that's nuts. I can't even begin to tell you what a bad idea I believe that is. Maybe I've missed something, but the people I've talked to are all in agreement: no BMT for adult CVID and 90% sure none for CVID kids, either.

Now, there is GREAT evidence that SCID and several other PIDDs, CVID is just not one of them. Maybe it will be someday, and I'll be the first to get excited about the medical literature that comes out about it.

You also don't win friends with the truth.

Trying.

I am turning a new leaf in med compliance today. I filled the pill minder. I will be better.

Tick... Tick... Boom!

Sometimes I feel my life is a ticking time bomb, especially this time of year. I managed to make it through the summer relatively unscathed, which is unusual for me, so I am certain it is merely a matter of time before I head down the path of cold-sinus infection-bronchitis that is so familar.

I feel myself flinch every time someone around me coughs or sneezes. Every single time. Probably because I know those could be the germs that make me sick this time. Heaven only knows what those germs <i>are</i>. I, for one, don't want to be the one to find out.

I am thankful for this stretch of fairly good health. I don't think I've been on an antibiotic since July, which is really rare, as the summer months tend to be the worst for me. Now, as the weather turns colder and folks debate the flu shot and cold prevention, I become restless. I want to do things, to see people, but I don't want to be sick. It's a difficult position to be in, since I can't really control whether other people disclose their health status to me.

If you are sick, please stay home. I really don't want to get sick.