Reality of Treatment & More

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    This is a two part update in one post as it is taking me longer and longer to get the energy to put information together that makes sense. First part is on my IV treatments and the rest is on Lyme today and how it effects everyone. Please get informed there is so much information out there and I have saved you alot of trouble by posting many of the links in the second part of this post. Thank you evreryone for your continued support and prayers they are very appreciated.

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    Two weeks of treatment have come and gone and I have definitely noticed a difference in how I feel. I just wish this was going to be the worst of it but I know sadly it is not. My energy level is low that even getting up to go to the bathroom is a task that I would rather not partake in. My phone rings off the wall and a streams of text messages a day. I wish I had the energy to talk to everyone that calls or texts but I don’t. I PROMISE I am not ignoring anyone on purpose 🙂 
    Just writing this blog takes so much out of me. My sweet friend Kim had a great idea to start updating with video but I have not been as brave as her to expose that part of this ugly, relentless disease. Maybe one day I can but for now I will just have to keep using pictures and my written word.

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    My friend mentioned something in her blog about the cost of this treatment and how insurance companies will only pay for 28 days of “investigational treatment” I thought I should add that to my blog as well. The cost for most people after this period will be on average $45/day. That is only for IV Home Infusion, that does not count the other antibiotics, medications, supplements and supplies needed. The reason that this is so important is there is such a coverup going on here and people are dying from Lyme because they can not get proper treatment! The cost of treating Lyme is very expensive and most doctors don’t want to get into trouble for treating it. So here are a few things to ponder.http://lymedisease.org/news/lyme_disease_views/lymepolicywonk-annual-lyme-costs-now-top-3-1-billion%E2%80%94it%E2%80%99s-time-to-wake-up.html

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    To give you an idea on how POPULAR insurance companies view Late/Chronic Lyme Disease, here is what is in your EOB’s (Explanation of Benefits):Aetna– http://www.aetna.com/cpb/medical/data/200_299/0215.html
     (If you actually read this all the way through you would be amazed at the constant contradictions in how it is confirmed and how it is treated. Just to give you an idea here is a clip from it.

  • Aetna considers outpatient intravenous antibiotic therapy medically necessary in adult and pediatric members with the diagnosis of Lyme disease only when it is based on the clinical presentation of signs and symptoms compatible with the disease and supported by a positive serologic and/or cerebrospinal fluid (CSF) titer ( So they want a SPINAL TAP)by indirect immunofluorescence assay (IFA), Prevue Borrelia burgdorferi antibody detection assay, or enzyme-linked immunosorbent assay (ELISA), which itself is validated by a positive Western Blot Test (see CDC criteria in note* below).~Aetna considers the following diagnostic tests for Lyme disease experimental and investigational because there is inadequate scientific evidence to prove their usefulness in clinical practice: (Click the link to see full list-you won’t believe your eyes)

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    United Health Care-
     https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/enUS/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Policies%20and%20Protocols/Medical%20Policies/Medical%20Policies/Lyme_Disease.pdf ***This one actually admits in its studies section that “IV ceftriaxone therapy resulted in short-term cognitive 
    improvement for patients with posttreatment Lyme encephalopathy, but relapse in cognition
    occured after the antibiotic was discontinued.”
    Blue Cross/Blue Shield– http://www.anthem.com/medicalpolicies/policies/mp_pw_a050480.htm


  • Some interesting sites on how big this is…

  • Dr.Phil Complete Show Parts 1-3

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    If you are reading this then you know someone with Chronic Lyme Disease. YES, YES YOU DO…ME!! So I am pleading with you to raise awareness. It is so more common than you may think. You may know several people with it and not know it or you yourself could have it and not know. People ask me all the time how “I knew” and I have to say it was a series of events and Gods impeccable timing that has gotten me to where I am now. I have had medical issues almost all my life whether it be one thing or another and to find out now that it was all related to Lyme Disease in one way or another angers me beyond comprehension. All it would have taken was for a doctor to test me for it, but because most doctors are not taught about Chronic Lyme or “It’s not common/or in this area” I was never tested or treated for it and went misdiagnosed for over 20 years! I also have to say that the current test that general labs do (western blot test) is not very accurate in determining if a person has Lymes disease unless it is caught within the first couple of months of being “exposed” to it. Like how I use the word “exposed” instead of bitten. The reason I say this is because you can get Lyme disease even if you are not bite by a tick!!!! AGAIN, YOU CAN GET LYME DISEASE EVEN IF YOU DO NOT GET BITE BY A TICK!!  It as not well documented but more and more studies show that Lyme disease is passed from mother to baby during pregnancy and that mosquitoes, small rodents carry Lyme as well.So, please do not be fooled by this massive ploy to hide this from the mainstream public. People are profiting off of this disease worse than any other I have ever seen and it needs to stop. People need to stop dying for inadequate care from doctors and insurance. I do not wish this disease on anyone, not even my worst enemy.

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    This disease strains every relationship that you have in life one way or another. No one fully accepts or understands what this disease is like unless they have it themselves. It takes on so many different things that it is not just one thing that defines it. The symptoms cover such a broad spectrum and come and go that people and doctors think you are crazy and need mental help. Its very hard for a person to have their own family and friends turn on them. The isolation that CLD (Chronic Lyme Disease) brings on is unimaginable. 

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    So to everyone out there family, friends, acquaintances and my fellow Lymies, I pray for us all to find peace with this disease and I pray for full disclosure to the world. So that one of your family members, friends, co-workers, friend of a friend,  or acquaintance does not feel the burden as I do now. The more it is talked about the more they will have to listen. If all of our voices become “ONE” we will be heard.Lots of love my friends it maybe awhile till my next post, so keep me and my fellow Lymies in your prayers…we need them! #Lymies4Life http://statigr.am/tag/lymediseaseawareness

  • Whole site dedicated on everything LYME! http://lymepedia.org/
  • Here are a list of celebrities with Chronic Lyme Disease:Daryl Hall – Hall & Oates
    Yolanda Foster Real Housewives
    Amy Tan author
    George W. Bush
    Parker Posey
    Alice Walker
    Peter Sarsgaard
    Richard Gere actor
    Tim Simpson, professional golfer
    Diane Varsi, actress
    Alice Walker, author
    Christie Todd Whitman, Governor 
    Ben Stiller & son, Comedian
    Christie Brinkley, Model
    Here is a longer list of famous people with LD or CDL
    http://lymeinside.wordpress.com/2011/11/22/index-of-famous-people-with-lyme-disease/
    http://hausfeldaboutlyme.wordpress.com/2010/06/30/celebrities-with-lyme-we-cant-all-be-crazy/
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  • PLEASE WAKE UP AND SPREAD AWARENESS!!!
    You may just save a life!
    http://timeforlyme.org/join-donation.html
    http://www.lymeresearchalliance.org/involved_donate.html
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