Wednesday, February 25, 2009

Hey Everybody!

So, not sure really who or how many are out there anymore, but in the next few days I have a couple favors to ask. The only way I can repay you is to thank you in advance for taking the time to read this, take action, and hopefully help make a healthy and lasting impression on other people's lives because you spoke up...

The first favor has to do with raising awareness for Lyme's Disease. As you may know from reading here, Noah's stool killed dozens of mice at the CDC but they never determined why. He had something infectious, but they used all his stool in the first round of testing, so never figured it out. Well, through further testing and blood work, we did find that Noah was born with the antigen for borrelia Burgdorferi, aka Lyme's Disease which was somehow given to him from me. I didn't realize it had been dormant in my body for years. Many people don't!

Continued research is being done regarding Lyme's, if it can transfer to a fetus during pregnancy, if it's presence in a small child, undetected, is the link to Autism through vaccinations and a slew of several other genetic disorders and diseases. The problem is, starting with the FDA and the CDC, not enough attention is being paid to this disease. So many people are being told it's just in their heads or have been given faulty clinical diagnoses for other things like MS, Lou Gehrig's, Rheumatoid arthritis, Chronic Fatigue Syndrome, Fibromyalgia, among other things. In some cases, OBVIOUSLY, those are the proper diagnoses, but in others, it's a misdiagnosis and it's the person and their family that miss out on the truth and on health.

So, yes, you know I don't watch Oprah anymore, not because I hate her, because I don't. Mostly it's b/c I rarely watch TV, but I know that is rare. We all know that in the media, if Oprah endorses or draws attention to something, it becomes a household name. Well, I am part of a Lyme Network. I receive emails, and as you all know, I still do research because I want to spare any other parent the journey I have travelled and continue to walk. Well, apparently there's a 'call' for topic interest on Oprah's web site and Dr. Oz is looking into bringing up Lyme's on the show. Below is the info. Would you please, please, PLEASE write in? You don't even have to have suffered from Lyme's but just writing in that you know of families who have been affected by it is so helpful. Believe me, I don't think that this is the only way to raise awareness, but it is a step forward.

Forwarded from Open Eye producer Kris Newby
Thanks to all of the people who wrote in to Oprah! We need to ask you another favor -- to write in again! Dr. Oz will be looking at this link!

Even if you wrote before, write again and ask Dr. Oz and Oprah to do a show on UNDER OUR SKIN and the controversy of chronic Lyme. Dr. Oz is interested but needs to see bigger response. Our last community page had 140-some comments. There were 150 people who wrote in to a recent question about toilet paper -- certainly we can get more people to write in about something as serious and life changing as Lyme disease.

Everyone spread the word! Write in and ask your friends to write in. Please - we don't have much time!

Click here to go to the link.


Believe me, I could write a dissertation about the effects of borrelia Burgdorferi on the human body. It is not just a little bug that attacks the body, like catching a cold. It's a stealth organism that attacks the cells of the body, can sit dormant for YEARS undetected, and when imbalance takes a toll on your body, it's activated to wreak havoc. It is not a respecter of persons and IT IS NOT LIMITED TO LYME, CT, or the Upper Northeast! People from every state in the union have tested positive for the antigen for Lyme. We all hate the word 'CANCER'. We all need to hate the word 'DISEASE', in general!

*You don't have to give your street address on the email link form above. If you'd like a suggestion as to what to say, shoot me an email at: adexoxox@gmail.com

Here's what I wrote, fyi:

Hello Dr. Oz. Apparently for the last several years I have had Lyme's Disease. I say 'apparently' because one, I didn't know I had it, and thus, didn't know it could sit dormant for years. I had symptoms over the last 20 years but never thought they were anything other than the average flu or strep infections. The only reason I was made aware of my condition was due to a 5.5 month stay in the hospital with my 7 wk old son, Noah. I took him in for chronic diarrhea but he was admitted for nystagmus testing. Then, his stool killed dozens of mice at the CDC (sent in for botulism, as a precaution for his hypotonia). To make a very, very long story short, after one and a half months, the ICU physicians, neurologists and geneticists were at a loss for diagnosis. They clinically wanted to call it a leukodystrophy, but couldn't because of normal lab test results, including DNA sequencing, and the infectious stool at the CDC, which was inconclusive. Finally, we sent our own samples to reputable labs for testing through outside doctors. Noah's blood and mine both showed the antigen for borrelia Burgdorferi, but not the antibodies. There are so many schools of thought on how Bb is transmitted. I don't really care about that. There will always be politics in medicine. My concern as a mother of a deceased child (we ultimately had to remove Noah from life support after 5.5 months w/o answers) and as a woman considering pregnancy in a later stage of life now, though Lyme free, is the lack of attention the FDA and CDC pays to this devastating disease. My question for you is why is Lyme's so 'hush hush'? There are many speculations, including some research, regarding Bb's link to many other horrible conditions. Are you willing to raise awareness, to think outside the box, and to educate the many millions of people who watch Oprah daily about the truth about Lyme and how it silently affects thousands, if not more, of people everyday? I appreciate your time.


The other favor is about the book. I'll ask later this week...Thanks, you guys!

35 comments:

  1. Consider it done!! I am grateful for an opportunity to do my part.

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  2. Done and happy to do it! I hope what I wrote is ok:

    I am writing asking Dr. Oz to do a show about the controversy of chronic Lyme disease. Awareness desperately needs to be raised to inform the general public about this potentally fatal disease and how to recognize and treat symptoms. I have gotten to know and love ( through her blog) a young woman who lost her infant son because she unknowingly passed to him the antigen for borrelia Burgdorferi (Lyme's Disease) in utero. Doctors were unable to diagnose him during his 5 1/2 month hospital stay and were therefore able to come up with an effective treatment plan. His parents ultimately made the devastating decision to remove their only son from life support. We all (doctor's included) need to learn more about Lyme's disease so young, innocent, precious lives, such as Noah's can be saved. THANK YOU!!

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  3. Anonymous5:04 PM

    I also left a message for Dr. Oz. Hope it helps to bring the message of this disease out.

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  4. I haven't written yet but I will and I will spread the word to others.

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  5. Anonymous6:52 PM

    Also wrote to Dr OZ

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  6. Glad to help get you some answers! :)

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  7. Anonymous7:59 AM

    this is on it's way to my contact list from nj to fl

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  8. I did it. I referred them to your blog, as well.

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  9. Hi Adrienne! I got your link from Karen H. and I sent Jake and my story to Dr. Oz. I know that your work on all this is blessed by God and I pray that the truth will be made known! Be sure to let me know if I can do anything else!
    Christine

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  10. Hey.
    I was given your blog address by one of my blog readers.
    I am also a Christian struggling through Lyme Disease. I have 3 boys.
    I would love to be in touch with you.
    www.livininaboysworld.blogspot.com

    I am so so so sorry about your baby.
    Oh my goodness, I cannot imagine the pain.

    In Him,
    Stephanie

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  11. Anonymous3:00 PM

    Consider it done, also sending it to my address book. God Bless you. Lynn in Nebraska

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  12. Anonymous6:04 PM

    MY PRAYERS ARE WITH YOU AS ALWAYS. HERE IS MY LETTER TO DR OZ:

    15 years ago this week my best friend's son died suddenly at age 11 of undiagnosed lyme's disease. at the time, our local doctors didn't test for it, didn't believe it was a problem and didn't know how to treat for it. after todd died, the autopsy revealed the lymes had caused brain swelling and seizures ultimately causing his death. my friend and i paid out of pocket to have ourselves and remaining children tested and 1 of her daughters, one of my daughters and myself tested positive. i wrote to the NIH and was informed that during that current administration, the only funds available were being spent on cures for HIV, hepatitis and lung cancer. I have hoped that things would change. I have recently been following one of the blogs of a friend of my daughter's. please view noahsteven.blogspot. com. the poor mom writing this thinks that it's a new problem. It's not. Thank you for your time. Glennie Wolfe Lake Shawnee, NJ

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  13. I have written in Ade x

    Love you!

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  14. Did it! Good luck! Thanks for spreading the word on your blog.

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  15. Ok, I just sent in my letter. In it I referred to you as "my friend". I hope that isn't weird for you since we've never met, but I've been following your story for a long time. Besides, it packed more of a punch than saying, "I know this lady whose blog I read on a regular basis.....".

    Please keep us posted - I don't watch Oprah anymore, either. I would love to know if this campaign is successful!!


    Dr. Oz,

    I am a healthy 38 year old woman, married for 13 years to a healthly man, with 2 healthy boys. I do have a friend who lost her infant son in the last year because of Lyme disease which she passed, unknowingly, to her son. What baffles me is that IT WAS NEVER DIAGNOSED. Therefore, Noah lost his life, a mother lost her son and a family was changed forever.

    How is this possible?? I have always thought Lyme disease was something you got from a tick. I had no idea it could lay dormant in our bodies and could be fatal to a child we give birth to. Frankly, that scares me. With the technology we have at our disposal these days, how was it not diagnosed? How many other woman are walking around with this disease and don't even know it resulting in miscarriages, infant death, or even later developing neurological disorders such as autism?

    Dr. Oz, every person could benefit from some education on Lyme disease, its symptoms and its cures. Please do all of us a favor by educating us on Lyme Disease.

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  16. I left a comment for Dr Oz. I hope that he can bring awareness to a topic that hits so close to you.

    Spring is coming soon...Your family has had enough winter for any lifetime!!!!!

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  17. 'Tis done, Adrienne.

    Cathy

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  18. Mine's been submitted! Thanks for letting us help. Love you!

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  19. I sent in a request too. It was the least I could do for your family and Noah.

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  20. You guys are so great! Keep spreading the word! I did want to say, to all of you, whether you have been personally affected with the disease, known someone who has died from it, or someone suffering from it right now, this isn't a 'new' disease. It's an underlying problem that has been around for years. Unfortunately, but thankfully also, I just have learned of it in the last few years.

    The gov would want us to believe it's something they just discovered in Lyme, CT, recently. But spirochetes can be found all over the world, affecting different systems in our bodies. And spirochetes are transferred to hosts (animals/humans) via some insects, not only ticks. Research has also found the antigen in every bodily fluid...It's a bigger problem than people think, but it's not something we should avoid or run in fear from. Why the gov gets to choose which diseases or conditions should receive more or less funding is ludicrous. We all have different bodies and are all susceptible to different ailments. What gets me is that it's a popularity contest. Certain 'elite' doctors and groups focus on what they want and then, when a new doc or an old one that wasn't on the radar as much wants to start bringing to light their research findings, the medical 'community' shuns them for thinking outside the box.

    Anyway, I could go on and on, but I just want to thank you all for helpling raise awareness for this. It's not just 'Lyme's' it's a bigger picture than that! I appreciate you all more than you will ever know...

    And to Keri, and ALL of you, you can call me friend...that's what I consider you guys!
    xoxox

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  21. Thank you for giving us the opportunity to help you as you have done so much to help so many people over your journey! I am glad to have the words to help in anyway that I can. If ok with you, can I link your post on my blog - while I don't have the large number of followers - I do have a few!

    Take Care,
    Love, Tara

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  22. Done and also happy to do it!

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  23. Anonymous9:48 AM

    Hey Adrienne, I did it too!
    Let's change the world, huh?

    :)

    dani

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  24. I left a message for Dr Oz, and am grateful to help you share your story.

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  25. Anonymous9:49 PM

    I am so happy to do this for you! You have no idea how much you have done for me since I discovered your blog during your hospital stay with Noah. Thank you for being you and always helping me to stay on center and focused on God. You, Adrienne, are a blessing to me! Hugs.

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  26. Done! :) Good luck and please let us know the results!

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  27. Anonymous3:48 PM

    Just wanted you to know that I am still out here. I will write Oprah too. I am right in Illinois and have been to the studio several times. I just wanted you to know that I am still here, I still (and always will) care and I will write to help with this.
    hugs & blessings~
    Lynda Bishop
    simplifymejesus@aol.com

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  28. Done A - I hope they listen!

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  29. I wrote in... I hope and pray they do a show...education on this dz would be great and I would like to know more as to why it seems like such a taboo subject in the medical world!

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  30. I also wrote Dr. Oz requesting a show about Lyme Disease. I referred them to your blog and told them to read from the beginning so they could see the full effects of undiagnosed and untreated Lyme Disease. Praying for results. Hope this helps :)

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  31. I'll join you, my friend! One of my nephews was just diagnosed with Lyme Disease.

    I just can't believe this ... so heavy.

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  32. Just did that. Here is hoping that they listen!!! As I sit here holding my eight week old child sleeping on my shoulder, I hope and pray that this disease will not have to be the story for another child ever again.

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  33. thank you so much for this... i posted to dr. oz a month or so ago when i heard the replay of this interview on the radio.

    i've had lyme most of my life and i cannot even begin to describe the frustration, pain, agony, and emotional hell it has put me through. we need all the awareness we can get.

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