Saturday, April 05, 2008

One day, this might help explain a few things...

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.


http://www.openeyepictures.com/underourskin/

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.

13 comments:

  1. Adrienne,
    I just *knew* as soon as I started reading this entry, that that movie would be about Lymes. My family is extremely affected by this horrible disease and I can tell you all about first hand how unbelievable/nonexistent our "care" has been.

    Everybody in my immediate family (siblings, parents) and our best friend family (2 adults, 4 children) has Lymes, except for me. The son of our best friend family died from this disease when I was in 5th grade - he was in 6th grade. His death started to give more "attention" (at least in our area of New Jersey) to this horrible disease --- but only to help doctors treat the SYMPTOMS not the disease itself. It's beyond discouraging that more isn't done...

    Thanks so much for posting this. Hope you're having a great weekend

    ReplyDelete
  2. My husbands uncle's family has all been diagnosed with chronic lymes. The family has 4 boys - all diagnosed but with varying degrees. It is believed that the two youngest have had it since birth.

    It seemed unbelievable at first because of the lack of public knowledge or general medical recognition regarding this.

    Thankfully they are all receiving medication for this and there hasn't been a death but there has definitely been damage due to the delay in diagnosis.

    They too were diagnosed by non-traditional practicing doctors and most of the necessary treatment has not been covered by their medical insurance.

    Amazingly enough - they are also from NJ (saw the previous commenter is from there as well).

    ReplyDelete
  3. Cathy3:19 PM

    Adrienne, your understanding of the bull**** that is our current medical system is amazing! I do feel the answer is out there somewhere, and I am hoping and praying you get the answers you need and deserve. I think your decision to hold off having another child is so mature and strong; so few people have the ability to look past their own pain and understand they must heal in all ways to be in the best position to open their hearts and lives to another child, though God will send you that child no doubt when HE sees fit.

    Not that you care about winning anything, but your blog was nominated for the Blogger's Choice Awards in the category of religious and parenting blogs. Unfortunately one must register at the site to vote, but those of us who read your blog and have come to love you and your family and better understand the Lord through your words sure could take the time to vote and let the Internet world know about your grace and understanding of God's ways. There's not enough of it in the world as it is!

    The URL to vote for Noah Steven's blog is http://www.bloggerschoiceawards.com/blogs/show/1787

    ReplyDelete
  4. Anonymous7:47 AM

    adrienne: this is randi jo's mom. you're in my thoughts and prayers today. about 15 years ago, i sat in the hospital with my best friend and her son. she had taken him to various doctors because of his joint pains and headaches. the doctors all told her he was "malingering" to get sympathy after her recent divorce. the only doctor to listen to her told her that her son needed an mri. because of the hmo insurance policy, she had to get the pediatrician's referral. this doctor refused as he thought todd was making it up. when todd started having seizures, the doctors all were focusing in on their thoughts of drug overdose. what a sad comment on society that they would consider that first in a child. todd died in february and in april, the autopsy showed he had lymes which gave him encephalitis which caused his massive seizures. todd's mom insisted we all go to a lyme's specialist and be tested. we all paid out of pocket because our physicians thought it was unnecessary. 4 of the 8 family members turned out positive and 2 were "borderline". the test needed was the western blot. if you have been on antibiotics in the past year, it may give you a false negative titer reading. we paid for randi jo's sister's treatment out of pocket because our insurance would only cover 28 days of treatment per lifetime and if the first stages of treatment didn't work, the second stages were exhorbitant in price. i tried to get 2 of my friends who worked at nih in bethesda, maryland to find out what research was being done on lymes. none. this was during the clinton administration and the funds were all earmarked for aids, hepatitis and lung cancer. all diseases of wrong choices in lifestyle--no funds for the innocent. as i said, you and your family are in my prayers and am forwarding the trailer link to others so they are aware. thank you for your positive blogging.

    ReplyDelete
  5. Adrienne I admire the way you write about this without resentment and bitterness BUT with a determination in your heart to find out the truth.

    I have friends in the USA and on a recent visit could not get over the complexity of your medical systems and am grateful for an NHS that although has failings at least gives health access to all.

    You are in my prayers

    ReplyDelete
  6. Adrienne...I have followed you blog for a long time now but I'm not sure I have ever posted a comment.....

    As I read this post, I could relate to so much of what you were saying. My daughter is 4 years old and we have spent 4 years going from doctor to doctor, having test after test run only to hear "it's all normal." Like you mentioned, her "normal" range is often barely "normal." I have watched her undergo more tests, evaluations, surgeries, etc than I ever imagined I would see my own child go through.

    Four years into our journey, my feeling towards many drs has changed....I struggle with why we are unable to look "outside the box" when it comes to our search for answers. Clearly the path we have traveled for 4 years hasn't been on to find answers to why our 4 year old can't walk as well as numerous other health problems.

    I will continue to pray for you as you walk your journey looking for answers. I HAVE to believe that there are answers out there...both for your family and mine.

    Thank you for your blog.......you are an inspiration.

    ReplyDelete
  7. Anonymous2:46 PM

    Adrienne,

    I check your blog everyday to see if there is any news about Precious Little Noah's diagnosis. When I found your blog through "Bring the Rain", I was so drawn to your site. I'm currently home recuperating from a foot surgery because I'm 6-8 weeks non-weight-bearing. I spent two days reading every entry that you had made on your blog. I was so blessed and was so drawn to keep reading. You have shared many, many personal feelings & incidents along the way with little Noah. I only wish I could have touched him just one time....but I will in Heaven! I know that God is on your side & HE never leaves us. Those valleys may be deep & the heartache unexplainable, but HE's still there with us each step of the way. I appreciate you & all you have done to drawn SO MANY people closer to our Lord & Saviour.

    My sister lost a 10 month old son about 10 years ago. No one knew what happened to Chance. They sent samples of his blood & tissue all over the world. After 1 year had passed they finally told her that it was genetic & they should never have had a child. I know this is not what you are going through, but just keep the faith & don't let those doctors push you aside.

    You were Noah's Mother & you knew him better than any human on this earth. Mom's know when something's not right. I only wish that they would have listened to YOU & forgot there stupid textbook knowledge. I kept saying "Listen to his Mommy."

    I will continue to read your blogs & will definitely continue to pray for you & your family. I only hope & pray that God will send you someone who will listen to YOU & try to find out the answers to YOUR body needs.

    Enjoy Em.....she is precious.

    Loving & praying for you in TN...Rose

    ReplyDelete
  8. Adrienne, I check on your blog almost daily and have been doing so since before Noah's passing. You and your family have been a blessing to me as I often sit here and weep as I read your posts. On a health-related note, have you ever heard of NAET treatments? www.naet.com We just began NAET treatments after Christmas for various reasons. If you want to know more, let me know and I'd be glad to email you about it. It's not "just" about "allergies". There is a LOT more to it. If you want to hear more, you can leave a post on my blog with your email address - I can delete that comment as soon as I see it, if you want me to. Anyway... my heart goes out to you all. I totally understand your angst and what you are talking about regarding health issues.

    ReplyDelete
  9. Ade,

    Thanks for sharing this. I was unable to view the video for some reason, but heard it all. And then looked at the photos of the people who are suffering, the things they've been told my medical "professionals." It is heart-breaking.

    It's quite interesting, because when I was coming to your blog this time, I was going to write you and see if I could pick your brain sometime about my health issues, as I've been dealing with this kind of stuff for almost 20 years now! (I can't believe I can say that - I'm only 34.) Anyway, then this was your post. And a few weeks ago, someone found my blog "out of the blue" and left a comment directing me to her caring bridge site - guess what she was asking me to pray for? Her horrible struggle with Lyme and the treatment that is taking her away from her husband and young children for maybe more than a year. I don't know if the Lord is using you guys to tell me somewhere to look for answers? Or just guiding me to pray? It's hard to know sometimes. And I've yet to find a Dr. who does more than tell me I'm depressed, it's all in my head, I need some antidepressants, it's just stress, I'm making it up for attention, etc. SO-OOOOOOOOO frustrating!

    Anyway, then we ate out with some friends the other night and I found out that he had lyme and was diagnosed and treated for it! You know why? Because he's an active duty military pilot, so they actually "care" about getting/keeping him healthy! He's an asset to our government, they've invested millions in him. But...if I would go in, the lowly military SPOUSE, as I have been doing for years, they will shoo me out of their office in annoyance.

    The roller coaster of emotions and struggle with frustration, disappointment and anger is hard for me. And I've not even been through the tiniest fraction of what you and many others have! But...I'd love to have it not GET to that stage. Hmmm...what a concept. Preventive healthcare.

    I continue to pray for you, hope the Lord works something out that will give you the answers that you need and gives you a peace about what His plan is for you and your future.

    If you have any thoughts on this for me, let me know. I don't even know where to begin, to be honest with you. I know you've got my e-mail address. :-)

    Have a great day! I hope the puking is all done now at your house.

    Love,
    Jodie

    ReplyDelete
  10. Thanks for sharing your struggles and highlighting others as well. I am a nurse and often struggle when I see doctors hampered by insurance companies or their own arrogance. Unfourtunatley, I also worry about NHS because I work at a military hospital which is a mini-NHS. They like to save money, too. They will not pay for non-traditional medicine either. I hope we can find solutions to these very frustrating problems.

    ReplyDelete
  11. Anonymous2:50 PM

    The issue of the week of April 28,2008 of "First" magazine has an article about Lymes disease... just thought it was interesting that a womens magazine is publishing a story about how it goes undiagnosed in so many.

    I saw this 2 days after I read your post and thought.....hmmmmm,hopefully someone is finally 'getting' it!

    ReplyDelete
  12. Anonymous9:07 AM

    Adrienne, at a recent doc visit my physician made comment about the MN Dept of Health being able to discover things that other departments had never been able to find, diagnose, etc. Have you, or would you be willing to, have them look at Noah's information to see if they can discover something?

    ReplyDelete
  13. Wish I had something profound to say about this...wow! Proud of you for not just giving up. There are answers! xoxo

    ReplyDelete