I want to share a link to a movie that will be at the Tribeca Film Festival that may or may not affect you or someone you know or love. I've said it before and I'll say it again, I know there are many in the medical community that are still truly healers by nature, that is, people not driven by big money, politics, and drug companies or insurance demands. We met many of them at Children's with Noah. I've gotten emails from people wondering why I am not angry at the doctors for not having an answer in regards to Noah. My usual reply is, "Doctors only know how much they have either been told or studied themselves." This is true, but does not mean they don't keep looking for answers. I am frustrated that any doctor that begins to look outside the box for answers for their patients are often deemed 'quacks' or 'renegades'. They are judged by their medical peers, and some rightly so, while others, healers, are getting their licenses suspended.
From our experience at the hospital, something happened that I would venture to guess happens in many fields of practice. The specialists that are called on to a case state their clinical assumption and all the rest of the docs follow suit. This is profitable when the clinical diagnosis lines up with pathological or seriological confirmation of stated condition or disease. It is neither encouraging or mind-easing to the parent or family member of the ill patient, or the patient.
You see, most of Noah's serum labs (sent to actual brick and mortar labs approved by insurance) came back 'normal'. None, however, merited a clinical diagnosis of a rare genetic disorder, therefore, none was able to be given him. Defined that means that his levels for which he was tested fell between ranges considered 'normal'. The reason I say that is if a range is "0 to 7" and you test 7, you are on the edge of normal, but considered 'normal' by the medical community. You may very well be normal, but you know how you feel, and you feel 'off' not 'normal' but the docs tell you you are 'fine' according to their pre-regulated tests. It isn't their fault they are telling you that since the test instructions tell them that particular range is 'normal'.
Have you ever not felt good, but not bad enough to really merit a visit to the doc since they'd just say something simple like, "It might be a virus or little bug going around. Get some rest, plenty of fluids, yada yada." In some cases, that is the deal. A little bug. There are a lot of bugs. That is why we wash our hands. There are a lot of bugs. That is why the flu vaccine from 5 years ago doesn't kill the flu bugs of today, and the one from today doesn't kill all the flu bugs of today...There are a lot of bugs. A lot docs know about and many others that are newly being discovered and researched. When our bodies are healthy because we feed them properly, get rest, exercise and drink plenty of water, those bugs usually don't stand a chance against our immune systems. Our bodies are like superhero bug fighting machines!
In light of all things 'normal', yet really not accepting that since our son was in respiratory failure, had chronic diarrhea, had a rash at home prior to admittance, and was losing strength by the minute, we were blessed with a couple of 'outside' docs (docs that didn't work for the hospital and were not controlled by drug companies or insurance regulations). We sent Noah's blood and stool off to outside labs for testing outside the box. To put it in simple terms, it's kind of like this: there are big chains that are available in almost any city...you would recognize these restaurant chains, for example, anywhere you went because they are big name, mass quantity facilities. You hear that there are some other great restaurants in town that are exclusive to that city, are reputable, have fabulous fair and safe and great reviews, but, since you know the other particular chain, you consider it the safe choice. One thing is consistent, you can always expect the steak at one Outback to taste the same in the next town. However, you missed out on the gourmet steak at The Chop House because, well, Outback is better?!
Does this make sense or am I confusing the issue? (FYI, for those out of town, The Chop House is reputable, long standing steak house in Denver...yummy)
Noah's, along with my blood work, over a year ago, produced interesting results that the folks at 'Outback' only looked for with their prize winning recipe. Their battery of tests did not reveal what further testing did.
I have continued my research into Noah's lab findings because A: it could have only been passed through my placenta and/or breast milk, B: I've had another kid in my placenta who is 5.5 years old and want to make sure she doesn't have these bugs, asymptomatic and C: I, in good conscience, do not want to get pregnant again until we figure out if either Jason or I carry more of these bugs.
Click on the link below and view the trailer.
The ID doc I've been referred to does not treat for the condition, or co-infections, related to the bug in the movie trailer aforementioned. Many don't or won't treat chronic sufferers because their symptoms don't all fit nicely under 5 bullet points in their CDC medical journal.
Why has this disease become a 'relative' choice for doctors to treat or not treat? In science when you don't know enough about something, you do research. In medicine, unless you have a diagnosis, a doctor won't treat. What would they write on the insurance form? Noah's lab didn't show the antibodies, or at least for standardized testing, he was 'normal'. He did, however, have the antigens. I tested in 'outside labs' positive for several buggers. Out of the 5 antibodies tested for recently, I showed one, therefore, 'normal' according to my doc and traditional medicine. I know two women who have this disease full blown who also tested 'normal'...You see, insurance covers the first test...further testing that actually reveals conclusive information comes out of your pocket.
Regarding emails sent my way wondering why I am a little crusty toward traditional medicine, big business drug companies and "insurance"...no further questions.