Saturday, August 21, 2010

You're Kidding Me!

PLEASE follow this link and carefully read the article!! Says it all!! 

Please help uncover the epidemic!! 

I had to take a break from the computer; hence no blog yesterday! The pain it causes my eyes is excrutiating! Those darn little spirochetes have taken refuge in my eyes and causing them severe pain! I can still watch TV but reading and using the computer are all but out of the question! So this blog will be short and sweet!
I have been off my IV abx for 3 days now and on oral Ceftin. I was actually starting to feel a little better Thursday and that I may actually be on the road to recovery but...yesterday and today I seem to be going backwards! I slept most of the day yesterday and was back asleep at 8pm last night. I did not even wake up till noon today! It frustrates and angers me as I read my insurance companies denial letter I recieved today! How kind of Anthem! I will fill you in a what they wrote:
"Your health care benifits require that we review your services to determine if the services are medically necessary. We have completed a coverage review for additional Ceftrixone Sodium Injection. (my IV antibiotic) We are sorry to  inform you we are unable to provide coverage for this service because the services are considered to be experimental! There is little available scientific evidence to show a good effect on health outcomes for this additional treatment!"
It has been 3 days since my last IV dose of abx and I am very worried about my health! I am going down hill again! My knees hurt more today, my head hurts, my eyes are terrible and the vision in my left eye is beginning to be affected by the disease! I was getting pretty good at going up and down my stairs and actually made it to the mailbox the other day! Today is a different story! I am out of breath the two times I have gone up the stairs and the fatigue is overwhelming! I was truly starting to see the light at the end of the tunnel! Damn the insurance company and David Gundlach, MD, Medical Director of Anthem! I would like to know who this David dude is? I find him to be very assume what is right for me? I am not his patient, he has never laid on eyes on me, has never spoken to me...does not know squat about me! How terrible if one of his family members contracts Lyme...I wonder if he would deny them coverage too?
It is a shame how this country treats its sick! Or not treats! How dare I be denied medicine...I WAS getting better and now I am going backwards! It is not a pretty place and I don't know if I can handle it emotionally...I am ready to be get out of my bed...take a walk...not just to the mailbox!! I am done being sick and want my life back! I miss my WalMart trips with Jimm, Silly Bandz shopping with Sophie...simple little things that made my life so wonderful!
This denial just makes me angrier to do something ! The only two states that take care of their Lyme patients are PA and MASS! I do know this year hundreds of Lyme patients made it to the steps of Richmond to speak on behalf of Lyme Disease and get the same Bill on the table as PA and MASS! There were so many that showed up! Congress was not prepared! So..guess what! It has been postponed and put on the docket for next year! What an excuse! Virginia is an epi-center for Lyme Disease and nothing is being done by the lawmakers, doctors and health insurance companies! I do not want to classify all doctors in this neglagent group...there are a handful of LLMD's! Many are "out-of-pocket" for fear of losing their LLMD made it very clear to me how his hands are tied...he can not treat his patients the way they should be treated! There must be a change now! People are suffering and people die at the hands of Lyme Disease! I am very worried about my eyes...the vision in my left eye is now blurred...and I have been denied IV abx because..? Because they know how much money Lyme Disease will end up costing this country if the truth about it is uncovered!
Thanks to all my friends for your continued love and support!! Please pass my Blog link on to others...we need to make a change! 

Wednesday, August 18, 2010


Denied...need I say more? My health is in the hands of someone who has never seen me and does not know me! So what gives them the right to tell me what is the best course of treatment...I am not their patient, I am not their daughter, sister, Aunt...devoted friend or family member!

I have so much to say right now but those pesky little spirochetes have taken refuge in the soft tissue of my eyes...protective niches is where these little shits like to hide from what is trying to kill them...the antibiotics! They are smart and the don't go down without one hell of a fight! 

There is so much I have to say regarding the insurance companies, doctors, lawmakers and the treatment of Lyme and Chronic Lyme! I will do the right thing tonight and end my blog...I payed the price today and spent 4 hours with my head under the pillow with a heating pad on my eyes...not even a narcotic pain pill helped the pain...excruciating! How does one describe eye pain? The pain associated with Lyme Disease is very different then normal aches and pains! OK...I need to stop eyes are not happy right now! I will pick up where I left off tomorrow!

Below is a link on how to appeal a denial...and there will be an appeal! The process has already begun! Hopefully my LLMD can handle it from his end if not they will be dealing with me and that alone should be enough!

Tuesday, August 17, 2010

Little Things

I just heard from someone who is "Tired of feeling sick and being called a hypochondriac!" And because of my blog and FB posts about Lyme is going to her doctor and having blood work and wants the name of my LLMD!!! YYYEEAAA!!! This is why I am doing what I am doing! Little things like this make my day! My mood, which has been pretty down most of the day, just changed! It brought tears to my eyes...I made a change...I helped someone! And in helping KB, will help others!  She is one more person whom I have educated! One more person armed with info on Lyme Disease! One more person taking charge of their life and not settling for what others say! It is very easy to start believing the world around you when you feel so sick for so long! I just realized that I do not know what it is like to live healthy! I have settled for average for so many years! I was sick so often and it became almost embarrassing at I know I was sick...there was something wrong! Even my therapist blamed me for being sick so often...I was bringing it on myself! Well RN...screw you...I was sick and I am sick...i have Chronic Lyme...educate yourself because you only made me feel worse! My husband, out of love, would say I would bring a lot on myself because I would allow stress to get to me...he is right about the find me one person who has a teenager, and a girl to boot, who does not have stress!! But I would get sick...really sick and it never made sense. It all makes perfect sense now! 

Today was another day with Lyme. Fever, chills, sweats, joint pain, fog in the brain, overwhelming fatigue, some heart issues, having trouble walking up my stairs, out of breath walking to my bathroom...and feeling very down. I am trying very hard not to get will only hurt me in the long run but it is very difficult when for the past 6 weeks you have been bedridden and confined to one room! Thank goodness for BRAVO TV!! I am loving those Housewives, Rachel Zoe and Jeff the adorable gay designer!! 

I watched some You Tube videos today and I am still in shock...why is Lyme disease not recognized and acknowledged? Where is the research for a disease that cripples and kills? A disease that outnumbers HIV/AIDS! A disease that knows no boundries! There are many people who are doing their best to bring awareness to Lyme but doctors and health insurance companies and lawmakers seem to ignore this disease which has become an epidemic! One video I watched today touched me...I broke my heart! I will attach the link...please watch it! 

My treatment is still in the hands of my insurance company..."pending!" In the meantime I will be on oral abx and will keep my PICC in maintaining it until we hear from Anthem. Maybe a change in abx will help...who knows? This is a tricky, sneaky and evil disease and very smart! The spirochetes get out of our bodies bloodstream and into the bodies soft tissue! By the time a patient is finally diagnosed, damage has already been done! It is imperative for early detection and treatment...they (LLMD) are saying a minimum of 6 weeks of DOXY should be taken the minute you see the tick or the bull's eye. I say the minute you experience any symptoms of Lyme Disease get on ABX ASAP! You can find information on Lyme and the symptoms at the ILADS website: 

 I am going to start setting daily goals for myself. I am hoping that will give me something to look forward to and hopefully make me feel like I have accomplished something! My goal for tomorrow is: Walk to mailbox!! It may sound simple to you but to someone who is suffering from Chronic Lyme it is a huge accomplishment! And to keep Blog up to date!

This is the vidoe I watched today...this is why I am doing what I am doing and will not stop until changes are made: 

Please pass the link to my blog on to friends, family...anyone!! Thank you for all your support & encouragement!

Monday, August 16, 2010

Pending Treatment step forward two steps back and sometimes 3 steps back! That is the Lyme way! I spoke with my doctors office today and whether my treatment on the PICC continues is "pending!" WTF pending? I am sick, still bedridden, still struggle with Lyme arthritis, neck and severe eye pain and overwhelming fatigue but whether I will be treated is pending? This is what is so frustrating about Lyme Disease and this is why I am doing all I can from my computer and bed! If I lived in PA or MASS there would be NO issue..I would be treated no questions asked! I want my life back...I want to run again, ride with Jimm, spend time with my daughter, never thought I would say this but clean the B&B's and work in the tasting room! My life right now is in the confinement of my bedroom! I know I will get better and I know it WILL take along was just not a good day I guess! I have let this disease get to me...bring me down and I can't let it win...I can't let it get to me emotionally...I know doing that is not good! I am only my worst enemy but am so thankful for all the support I have from Jimm, Sophie, Kaitlin and most of all my Momma and of course all my wonderful friends! I could not do this without any of you...I love you all!!
Anyway...maybe ending today's Blog would be a good thing...I don't want what I am doing to be negative...I want to bring change and awareness to this illness! I want people to be aware of their symptoms, to be their own advocate, to ask questions, to research and to reach out! If you are having any Lyme symptoms PLEASE do not settle for what most doctors will tell you...ask for a Western Blot, ask for the results whether they tell you you are negative or positive...ask for specifics...what bands are positive on the IgG and IgM...then get on the internet or contact me and get the treatment you need! If I had originally listened to my family doctor...who knows how sick I would be now!

Thanks to any of you who are taking the time to follow my Blog...whether there is one or 100...if I can help that one person that is all that matters to me! Please feel free to send the link to my Blog to anyone!

Tomorrow WILL be a better day! And keep your fingers crossed my insurance company will continue my treatment!

Sunday, August 15, 2010

Real Life

Because of the constant pain in my eyes I have had today and some vision issues with my left eye, I should be resting my eyes but feel compelled to write...I may just help that one person! Last night I spoke with a gentleman named Erwin who like me is suffering from Chronic Lyme. He is at least a year ahead in his recovery but gave me hope there is a light at the end of the tunnel. He too spent months in bed, suffered severe lyme arthritis, neck pain as well as headaches and overwhelming fatigue! He struggled with doctors and was told by an infectious disease specialist at UVA it was all in his head and was sent for a psychiatric evaluation...he was out the door before the doctor could finish his sentence! I too had the same experience with not only UVA but Hopkins as well! Two of the best hospitals in the country and not willing to educate themselves or stay up to date on a disease which has become an epidemic! Two hospitals with doctors calling themselves "Lyme Specialist!" To me a LLMD is a doctor who takes the time to educate themselves and stay current with the diseases they are treating! This is unfortunately the scenario and why so many patients are not getting the treatment they need and why they end up with Chronic Lyme! 
In speaking with Erwin, he expressed his frustration with finding a LLMD. We had many stories to compare! Thank goodness he finally found a LLMD and is slowly on the road to recovery. 2 years later he still can only work a half day and naps 3 hours before dinner. He still has severe neck and joint pain and is overcome by the fatigue! He told me about a Lyme support group in Warrenton which meets the 3rd Thursday of each month. As bedridden as I am I feel lucky...he talked about the Lymies who come to the meeting in wheelchairs and walkers, about a 17 year old whose eyes have been so affected he can not be in a room with a light on. He talked about a girl who is now 25  and has had multiple suicide attempts because at 13 she contracted Lyme. But...12 years ago Lyme was still "New" to the medical world and for years this poor girl was told she was "Crazy" and began to feel there was something wrong! Now after all these years she finally has an answer...Lyme! Although never suicidal...for years I have been mocked and made fun of because "There is ALWAYS something wrong with you!"  "You're a hypochondriac!"  NO I am not...I am a person suffering from Chronic Lyme! This is reality...REAL LIFE and from the day I was diagnosed my life will NEVER be the same!

There is so much more I need to share but my eyes are in a lot of pain and I know what will happen if I do not stop...a night full of excrutiating pain and no sleep!

Saturday, August 14, 2010

Frustrating Fatigue!! goal was to Blog everyday and document my Lyme symptoms! Well...they got in the way yesterday and I was not able to Blog!!  When you have Lyme you hear all the different ways one can be can affect every system in your body and everyone is affected differently! One of my symptoms which has caused me excruciating pain has been my eyes and spending time on the computer only makes the pain worse! How ironic...the time I spent setting up my blog, which I hope to use as an avenue to help bring awareness  to Lyme, kept me away from my  goal...and the short time I have been on today...I feel the pain already setting in! The only thing to do when the pain sets in is take a pain pill and close my eyes and hope a migraine does not set in! 
My eye pain is just one of many...and I mean many...symptoms I experience on a daily basis! Some may come and some may go but a day does not go by without one or all of them rearing their ugly head! The overwhelming fatigue never seems to want to take a break and is very frustrating! No matter how I feel I am continually taken down by the fatigue! I can not get enough sleep and walking up the stairs to my bedroom is by far one of the most exhausting feats of the day! I would take the Fodderstack Hill any day over the exhaustion I feel! And for those of you whom have run "The Hill" know what I am talking about! LOL 
Some people struggle with the arthritis Lyme brings. My knees, neck, ankles and believe it or not my knuckles have all been affected! The pain changes daily but never fully subsides! Getting out of bed can be the most painful until my joints loosen a bit...but I don't spend a lot of time out of bed due to the overwhelming exhaustion! A catch 22 and a no win situation for now! It is not my intention to sound so negative...I am trying to think positive! It is hard at times to not throw yourself a pity party when you know the road ahead to recovery is a long one and the only bumps in the road are the insurance companies and the CDC! Which is why I have taken it upon myself to document my journey with this document my symptoms, my doctor visits, the insurance companies and my treatments! To be honest no matter how glum it may sound! My goal is to bring awareness and help others who are suffering at the hands of Lyme Illiterate Doctors and may not be getting the treatment they so need! It is also my goal to follow in the footsteps of the State of Massachusetts and help pass a law not only in Virginia ( I guess one step at a time!) but in every state in this country and make it mandatory insurance companies not only acknowledge Lyme as the chronic illness it can be but to NEVER deny the patient the long term antibiotic treatment Chronic Lyme requires!  
I am now on my last week of my 4 week IV antibiotic treatment and my LLMD (Lyme Literate Doctor) would like my PICC-Line (peripheral intravenous Central Catheter-Line) to remain in another 4 weeks. My symptoms have subsided some but I am still very, very sick and new blood work not only shows Chronic Lyme but a new infection as well! Unfortunately, my doctor is not hopeful and is very concerned the insurance company will deny my long-term treatment! which is a reality! Whether my PICC remains in or not, I will be on a "Cocktail" of antibiotics for a minimum of 6 months! Lyme does NOT go away, one will NOT get better, so treatment is a MUST whether insurance covers it or not and can be very costly to the patient! I have yet had the courage to ask whether my insurance will cover my continued, long term treatment! I am far from better and have a very long road of recovery ahead of me and have been told I may never fully recover...and will live with the disease the rest of my life! How dare someone I have never met who spends their day sitting in cubicle have the right to tell me what is the best course of treatment! I am sure if it were their mother, sister, aunt, member or dear friend, their perspective would be different! 
My Blogs will tell my stories of Living with Lyme, others and their stories of living with the illness. I may attach articles or suggest links...there will be no consistency! My goal is to hopefully gain a following, an on-line support group, and bring this insidious disease to the for-front! I want the medical profession, the CDC and the insurance companies to acknowledge not only us, the patients, but the debilitating disease as well. A disease which wreaks havoc on our bodies everyday! A disease which can literately take you down overnight. A disease which will forever change the life you once knew!

Thursday, August 12, 2010

My Lyme Journal it goes! Not only did I join Twitter tonight I have also created my very first blog!! All in the hopes of bringing awareness to the insidious and debilitating disease Lyme! I hope by posting my blogs I can help others and one day be a part of convincing the CDC, Health Insurance Companies and the medical profession that we are dealing with an epidemic and the guidelines for treating this crippling disease MUST be changed! Education is a must and for those of us who suffer on a daily dare we be told Chronic Lyme does not exist! Please follow me on Twitter @kathywithlyme and on Facebook...Kathy Gleason-Krometis.

This is just the beginning and I WILL not give up until changes are made!