Archive | April, 2013

Thank You For Your Support

17 Apr



Thank You For Your Support

Most days I do not feel well enough to talk and respond but I try to. My brain is so empty and mushy it is hard to respond and make sense or say what I want to. I just wanted to thank all of you for your support and kind words on my posts. They really do help me and make me smile.

I really wish all of you a healing and peaceful journey in your healing no matter what illness you have. I have friends in so many different support groups so I am familiar with many illnesses and have seen so many suffer or pass away. Most healthy people have no idea how much pain and suffering goes on with others but we get to see it and feel it first hand.

I know depression and sadness goes with suffering so I always try to encourage and inspire if I can. Just the smallest of things can really change a life or bring a smile to the face of someone who has been through so much. So remember to try and begin and end your day with a positive thought and no matter how depressed you are find a reason to smile.

Thank you all and best wishes in all of your lives. Things will get better so hang in there and keep fighting.











Got My MRI Results Tonight

15 Apr

This picture is from 2010 I don’t have a current one yet.


Got My MRI Results Tonight


Friday I went in to have an MRI of my C-spine and Thoracic Spine. My right hip and Lumbar have been hurting also but the doctor wanted to work from the top down first. About 1 hour and 45 minutes before the appointment I received a call that said I need to “rush to the imaging center asap doctors orders”. So my dad took me as fast as we could.

This is most likely my 4th or 5th MRI but my memory is bad. I laid on my back as usual and was sent all the way in the machine as expected. What I didn’t expect is the excruciating pain in my back laying on that table. It was mainly on my lower lumbar at the top of the hip/pelvis.

The pain was a radiating “toothache” type pain where it would not give up (which is not unusual with us spoonies). On a ill person’s pain scale it was at least a 10-12 where I was biting my lip, grunting and holding back from crying out loud. I had tears in my eyes and could barely talk back to the MRI staff as she asked me questions. I wanted so bad to move and get out of there but I learned from a bad 2.5 hour MRI experience in the past not to move one muscle or you have to do it all over.

When the “bleep, boop, arghhh, grrr, tock” sounds from the MRI machine ended I was so relieved. It was a little over and hour of not moving. For those that never had an MRI it is very easy if you can lay still and you are not claustrophobic which I am not.  The sounds will drive you insane though. I just never had so much pain while laying in one. The lady said “wow great job you must be a pro at this”. I went to stand up and could barely walk or see and ran into everything on my way out using the wall as a guide.


Around 7pm last night my Neurologist called with the results. I am still waiting for the Neuro surgeon to call me (the one who let it go this long). My Neuro doctor is about the only guy I really like as far as doctors and he even wrote “lyme disease” in my report without rolling his eyes.

The doctor literally said “Bryan I am worried, you do not do anything you need to stay on the couch and even if you get one bump you will have full paralysis”. He said since my last two MRI’s things look worse and the flattening of the spinal cord is worse. I also learned of a cyst on the spinal cord now which has me curious if it is lyme since mine has been in cyst form. The T-Spine also showed a bulging disc but not bad. My L-Spine is where most of the pain resides also so I know once I have that done it will show wear and tear.

Hi Bryan,
This is your MRI of the cervical spine repost as you can see you have degenerative changes and disc herniation at level C5-C6 and causing moderate spinal stenosis and flattening cord there is also mention about small cyst formation. The findings showed further mild progression from 8/10/2010 MRI of C-spine. Your thoracic spine also showed mild degenerative changes, but nothing serious,
My recommendation is same as I mentioned previously that is  to get consultation and treatment with Dr Schneiderman.
Dr. Suga
CLINICAL INDICATION: ICD-9 723.0. Cervical spondylosis, bilateral
upper extremity radiculopathy.
Comparison: August 10, 2010.
Technique: Sagittal T1, T2 and STIR sequences, and a
three-dimensional axial T2-weighted COSMIC sequence, through the
cervical spine.
Findings: The craniocervical junction is intact. The cervical
alignment is satisfactory. The vertebral body heights are
maintained. There is no bone marrow edema. Disc desiccation is
present at C2-C3 through C6-C7. There is early marginal
osteophyte formation and mild loss of disc space height at C5-C6
and C6-C7. The imaged portion of the posterior fossa content
reveals no mass effect. No intrinsic spinal cord signal
abnormality is observed.
Evaluation of the individual disc levels demonstrates:
C2-C3: Trivial disc bulge is present with a slight broad-based
left paracentral disc protrusion, without significant spinal
canal stenosis. There are mild uncovertebral degenerative
changes, and mild left-sided facet arthropathy changes are
present. No significant foraminal stenosis.
C3-C4: Uncovertebral degenerative changes are present
bilaterally, with mild left foraminal stenosis. Trivial disc
bulge is present without spinal canal stenosis.
C4-C5: Mild uncovertebral degenerative changes are present, with
mild left foraminal stenosis. Trivial disc bulge is present,
without spinal canal stenosis.
C5-C6: Moderate spinal canal stenosis is present as result of
disc bulge and a superimposed moderate-sized broad-based central
and right paracentral disc herniation. A small amount of
associated superiorly extruded disc material is present at the
central position. There is moderate cord effacement with
flattening and abnormal concavity of the anterior spinal cord
contour, and flattening of the bilateral posterolateral cord
contour is. The herniated disc has mildly increased in size and
the degree of spinal canal stenosis has mildly increased.
Uncovertebral degenerative changes cause mild bilateral foraminal
C6-C7: Borderline spinal canal stenosis as a result of disc
bulge. Uncovertebral degenerative changes narrow the left lateral
recess and mildly narrow the left neural foramen; left lateral
recess narrowing has mildly increased. No right foraminal
C7-T1: Normal.


Impression: Mild to moderate cervical degenerative changes.
Moderate spinal canal stenosis with moderate cord effacement at
C5-C6. Borderline spinal canal stenosis with left lateral recess
narrowing at C6-C7. Degenerative changes at C5-C6 and C6-C7 have
mildly worsened compared to the August 10, 2010 study. Stable
milder degenerative changes at other levels.


I know many of you have had this surgery and are waiting to have this surgery. I will stay positive and I know there is a good chance this will get rid of a lot of the pain, stiff neck, neuropathy, numbness, headaches….etc that have been bugging me from the discs. I will most likely consult with my LLMD but at this time the Neuro is telling me it is a must have and as soon as possible.

I think I have chosen that the fusion is not for me and I want TransCorporeal MicroDecompression (TCMD) on my neck if I qualify. It is done but just drilling a hole in your own bone and they fix the bulge through the hole instead of getting a new bone or plates and screws. It is said to be better and the latest and greatest thing.

Here’s a link that talks about the surgery and has videos.

– I thank you all for the support and kind words. I am still very ill from lyme and depression from other things going on so I try to be around for support when I can. I wish you all well on your illness journey or your loved ones and I hope you find some sunshine on those dark days. Try to stay positive and never give up better days are ahead.


Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?

11 Apr



Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?

After losing the ability to walk recently my walking slowly came back. Vertigo has not been my friend though so I never walk like a “normal” person. I knew my body was telling me something and I bought a wheelchair because I could feel something was wrong. My body was right so always listen to it. I had a lot of bad news this week not just about me so let’s just say I am a walking zombie.

At my neurologist appointment today the neurologist said “why did you come to me, you need to see a neuro surgeon asap”. He did the standard muscle testing and poked needles in my body and I couldn’t feel most of them. I have numb, cold areas down my spine, legs and feet do not work well, a lot of spinal pain. My arms are really numb and couldn’t feel the safety pins he stuck in them.

The neuro said “you are very close to becoming a quadriplegic and you should have had surgery back in 2010″. Well back then my Lyme doc said “no surgery” due to the antibiotics and the neuro surgeon told me not to come back until I was losing feeling in my arms because the surgery is not the greatest and try to get by as long as I can.

I was told by my LLMD and by my new LLND that Lyme can ruin the spine. So I am not 100% sure if this is Lyme related or just a coincidence. But how does ones discs herniate when they just lay in a bed all day and barely walk around the house? The doctors seem to think I am out playing sports.

I am going to remain positive and know that this surgery will help keep me from being a quadriplegic. I am now looking at options for surgery so if anyone has feedback good or bad feel free to comment. I am thinking about the laser surgery in Arizona versus the standard plates and screws.

I was looking at the Laser Spine Institute in Arizona. Any feedback? Better than normal surgery?



– Hope you all are having a better day. Keep your head up better days are ahead.


PS I haven’t slept in 24 hours so I may not be really writing this and just hallucinating. LOL




The 5 Stages

3 Apr

5 stages


The 5 Stages

These are the 5 stages of grief after losing someone but I think they also fit in with dealing with a chronic illness. We all have different illnesses or situations and our lives have changed drastically from these illnesses. Everyone has a different story to tell and not all of these stages of grief may be in any specific order you are going through or have gone through.

When we get the news about the illness we have so many overwhelming thoughts and emotions running through us. Some people cry on the spot, others bottle it up and it may come out later, and others may accept it and wonder how they can start to treat it. We all deal with the news differently but we all seem to go through one or more of these 5 stages at some point. What stage are you at?

I am very exhausted so I will keep this short and I hope to the point. Forgive me if I do not. My blog is a distraction from the pain so sometimes I get sidetracked. I hope I can explain this properly so if I am wrong please feel free to correct me.


This is the stage where you found out you have Lyme disease (or any other medical issue) and you are saying “no I do not, the test is wrong” or something like “this is not real and cannot happen to me”. You haven’t really had time to process the information and accept that you are ill so you may not even shed a tear at this point. In your mind you are thinking “this is a bad dream and it will all go away”. You refuse to think you are sick.


At this stage you are beginning to think “why me, what did I do… I hate you life”. You may get moody and lash out at others for no reason. You sit alone and may cry and feel so pissed off that this is happening to you. You may yell, break things, and even feel self-destructive. People will notice you are not yourself and you may or may not tell them what you are going through.


This stage is where you start to beg, wish, pray that your Lyme disease will go away. You may think things such as “please, I will be nice to everyone from now on if this will just go away and I will be healthy”. You will do anything if you can just go back and be healthy again.


This stage is where many of us are and will stay because being chronically ill and having no life is not fun. We lose friends, family, our lives are lost, and many are bedridden. Who wouldn’t be depressed? This is where you the reality that you have Lyme disease and you will be on a long tough road to recovery has really hit you hard. You cry, lay in your room alone, stop talking to others, and even some become suicidal. We feel like nobody understands us or our struggle, we feel no reason to smile or laugh anymore. We feel empty and may have no emotions. This stage will most likely last the longest or never go away.


This is the stage where I am at and that is being at peace with your illnesses and crappy life. You no longer think “why me”, you may still be depressed and have acceptance. You are “okay” with being ill but not an okay as if you are happy with it but more of a “I better learn to deal with this disease so I can spread awareness, help others, and help myself”. For me it’s just about going through the daily routine such as taking my pills and never thinking how bad it sucks but you just do it because it is now part of your life.



– Find a reason to smile today as always, even the littlest things can bring happiness.




People Who Have Died From Lyme Disease – Rest In Peace

2 Apr

candle memory


People Who Have Died From Lyme Disease (as of April 2013)

I often get asked if Lyme disease is chronic or can be fatal. Well here is a web site that may help put things into perspective. Click HERE to see the long list. *This list could be longer and names may be missing.


Day Of Reflection

The Lyme community via Facebook will be holding a moment of silence for our loved ones and fellow warriors lost. “One day of reflection and one hour of silence from 6pm to 7pm (Eastern Standard Time) on May 1, 2013 for all those who have lost their lives due to Lyme Disease.”


People Who Died of Lyme Disease:

**I would like to add my friend Jeremiah Katches to the list below. We miss you.

Michael Cunningham
Jon Pierre Lavallee, 46
Frank John Ferrigno, 48
C. Gordon Smith, 67 Moonface Bear, 35
James Roderick Mason
Kimberly Carol McEachern, 42 Kathryn H. Brown, 85
Kim Wood, 48
Lynette McKinney, 64
CT Girl, 7 Years Old
Brett Anthony Paul, 31
Joseph F. Lyons
Freida R. Gaultney
Preston H. Longino
Dr. Basil Roebuck
J. Howard Marshall Jr.
Isabella Radestock
Dr. Carole Alton
Martin F. Dumke
Dr. Sterling Edgar Walton
Sue Ellen Helms, 55
Jodi Lynn Swift, 35
Norman Jenkins Ryker Jr.
Julian B. Backus, 52
Joan Maura Friedenberg, 53
Steve Nelson, 38
George Nijboer
Dr. Stephen Gumport
Ann H. McChesney, 58
Clarissa Tilghman Yost, 95
Piet Van Leer, 82
Thomas W. Hughes, 51
JHopkins Autopsy #26488
JHopkins Autopsy #46758
Michael Hinsberger, 53
John Miskiv
Jonathan Bleefield
Craig Moon, 46
Florence Desillier
Shelli Grossnickle
Patrick F. Bogdanovich
Darlene Joyce Deyo, 50
Robert Benton Senior
David Frederick Rosenau, 59
Patricia Bauman, 73
Amanda Schmidt, 11
Glenn Edward Killion, 36
Kevin Ring, 37
David Lee Thomas, 18
Miss Christina Marie Lambeth, 19
Kathy Cavert, 51
Dr. John Drulle
Gayla Diane Keyes, 52
Shirley Forsman
Everett ‘Ed’ Francis Ives, 53
Lynette McKinney, 64
Beverly Stanton, 53
Rena McNulty
Dr. William ‘Bill’ Nichols
Brian Pierson, 47
John W. McGrath, 75
Larry Dolan, 56
Dillon Jamison King, 37
Deiby Ashkenasy, 23
Beth Coen, 46
Richard Robley, 47
Owen Klepper
Simuel L. Danny Hogan
Elizabeth Burke Laubach Claflin
Kendall Wooten, 22
Ellen Agnes Loughlin, 56
Lori Lynn Widlund, 42
June Atkins, 77
Richard T. Mullin
Travis Wilson, 23
Professor Alasdair Crockett
Ellen Havican Watson, 20
Jesse Jonah Goldsmith Morgan, 35
Dr. Edward Stanley Arnold
Pat Pepper, 58
Gordon P. Grafton, Jr., 46
Dr. Michael G. Linebaugh
Christopher Peter Thomas, 46
Peter Edgar Hare
William Henry Boesche, 41
Robert Lee Runion, 77
Chester A. Mellen
Barry Horton, 55
David A. McHoul, 63
Arlene DeLaurier
Jamie Forschner, 5
Dr. Jane Colfax
Sharon Ann Gross, 41
Joyce Marie Woods, 46
Jenny Umphress, 21
Scott Brazil, 50
David A. Butler, 73
Gilbert Thornton Perkins, 77
Theresa Jean Wells Clay, 45
Timothy Alan Selepec, 46
Catherine Klapak, 44
Dr. John Bleiweiss
Martha Bradley, 68
Gayle R. Hogan, 66
Paul Fjare
Larry Bennett, 50
Michael Wilson
Adam Rowett, 18
Gloria Jean Baglio
William A. ”Bill” Mattson, 62
Catherine Klapak, 44
James Sanders, 55
DeWayne Murphy, 34
Mike Thomas, 48
Barry Horton
Robert Michael Hanson, 49
Edwin John Parssinen, 86
Peter Anthony Banducci, 45
Diane Varsi, 54
Randy Stevens, Jr., 6 minutes
Stewart H. Dowell, 62
John Thomas Pitner, 28
Rude, Charles Lee, 54
Jerry Balistreri, 51
Stanley V. Piser, 90
James W. Loughran, 63
Doris Grade
Rick Fincham, 44
Ted Paul Richard Hoggard, 21
Terri Dahl Fishel-Hokit, 61
Brian Hirsch, 43
Hilary Skinner, 43
Dr. Corey Brian Schmidt, 53
Carlton Tucker, 38
Kenneth Hagen, 39
David Cole, 65
Polly Todd
Richard Holtry
Bonnie Borntrager
Dana Hathaway, 51
Paula Rae Lipkin, 52
Robert Silverman, 45
Ronald S. Ferris, 55
Michele Rose-Clair
Sarah Minor, 44
Helenette Suchocki, 67
Tim Snow, 44 *
Kevin Smith *
Watt Carter
Susan Hawkes-Koons, 57
Theresa Nelson, 38
Terry Allen Wood, 48
Luther Conant, 51
Carmen Charles Casciani, 64
Alfredo Mathew Jr. , 59
Ann Vesonder, 46 *
Karen Sullivan, 48 *
Hartley Everette Jackson, 87
Chantal Seaman, 62 *
Donna O’Toole, 35
Katherine Alderson Crowe, 77
Peter Vyselaar*
Linda Fuller, 57
George Wendell White Jr. , 83
John A. Every
Stephen Dolan, 30
James Andrew Anderson, 58
Dennis Stephen Johnson, 58
Richard Delano Thoner
Philip J. LaMonico, 69
Guy Sumner, 66
Thomas Roberts
John Martini
Betty Jo Hemphill, 52
Betty Jo Loubier, 45
Gail V. Fichtl Walling, 49
P. Kevin Missett , 52
& Elizabeth Graham Missett, 58
Vickie Crawford, 55
Nina Bonderman Tarnofsky, 80
Balsorah Lamar Savely Miller, 64
Kimberly Ann Cooper, 37
Kathleen E. Schuyler, 52
Harry Hartner, 62
Vincent Sota, 47
Vincent Paletta, 61
Robert J. DiBattisto, 64
Robert J. Hoffman, 48
Jim Sazani, 59
Ginette Ellen Jones, 39
Barry Gordon, 52
Debbie Selberg, 52
David A. Butler, 73
Stacy Lynn Grow, 28
Marion A. Hastings, 68
Eleanor J. Kuhar, 81
Leslie Clifford Kiggins, 77
John N. Gamble
Benjamin O. Carter, 68
Michael G. Schulte, 69
Robert J. Thompson, 49
Stephen A. Herring, 42
Rebecca Rose Boone-Britt, 55
Rebecca Marie Jarrell Nichols, 50
Harry Phillips Sullins, 73
Thomas B. Brown, 83
Logan Kock
Frances X. Bender, 56
Imogene R. Schultz *
Bill Chinnock, 59
Teresa McGilley Redlingshafer, 72
Duane H. Johnson, 65
James Paine Koch
Eric von Schmidt, 75
Shirley E. Wolfenden, 75
Maggie McCorkle
Priscilla Moulton Shafer, 73
Judith Ross Boynton, 54
Deborah O’Connor DeMarco, 40
Raymond J. Krueger, 79
Holly Kulikoski
Richard M. Scott, 86
Donald J. Simpson
Germaine”Gigi” Chamberlain
Christine M. Rizzo
Joseph Gregory Padner, 48
Lonnie Benedict, 45
Patricia F. Gerstner, 56
Frances L. Jacob, 75
Robert M. Silver
Michael John Fried, 65
Anna Gorbsky Hladchuk
Leonard J. Spooner
Paul Butler *
Samuel Butler *
Jane May Chapman, 45
Dr. Edward L. McNeil, 81
Dr. James Alan Yarbrough, 54
Col. Bryce H. Wagner, 62
Britteny Gallgher, 17
Robert Dawson, 55
Shirley Moore, 67
Steve Cheek, 52
Sarah Elizabeth Pawson, 41
Barbara Lynn Fitzmaurice, 56
Robert Chilton
Drusilla Davis Howey, 68
Jacqueline Lewis Hacker, 55
Suzanne Spear Lawrence
Jimmy Duarte, 70
Gustav R. Persson, 62,
Patricia Ann Holloway, 71
Mary Frampton, 76
Shirley E. Wolfenden, 75
Michael Coers, 62
Robert J. Hoffmann, 48
Harry Burke, 82
Rose – Karen Johnson Rose
Bruno C. Malvezzi, 87
Robert Earl Wicker, 56
Steven F. Wells, 45
Sheldon Willis “Tex” Stout II, 66
Joseph Vocino
Lloyd Ebert, 101
Emily Powell, 15
Gregory Joseph Deneault, 45
Arda Manoukian, 50
Susan Starchuk, 62
Michael “Mike” Wilnau, 53
Lothar Bachmann, 65
John Douglas Powell, 64
Gianetto, Joseph F.
Charlene L. Kaijala, 52
Mike Gregory, 43
Russell Paul Reach, 49,
Harry E. Waechter
Buck R Benoist , 66

For more information and obituaries of these beautiful people, please visit…




Visit To New Secondary Lyme Doc LLND

2 Apr

Puzzled male shrugging wearing lab coat


Visit To New Lyme Doc LLND

Do you ever leave your doctor’s office feeling like you have accomplished nothing and wonder why you even used all your spoons for the day on the visit? That was this visit today. I left feeling like “here we go again”. The picture above looks just like how my doctors face looked. This is why I was hesitant to see anyone besides an LLMD.

My LLMD is pretty far away and always booked so I have been searching for a closer doctor who treats Lyme just for the bad days and a place to get refills easier. I found an LLND after hearing good things about him. He was trained under my current LLMD. This LLND also takes my Medicare so that was a huge plus. 80% of my bills will be reimbursed.

So….the doctor walks in and introduces himself and then asks me (Mr. No brains or memory) to tell him all about me and my medical history. Of course I have my mom there as always but he wants to know from me. I am sitting there struggling to find words or talk and forgetting dates. I finally told him “I have no idea what day or month it is so this is really hard”, he didn’t seem to care. I also forgot to take my pain meds for the day so I was squirming in my chair bitting my lip in pain.

He was taking notes and wanted very specific dates of for example; “what month/year did your IBS start”….etc. I can see how this is helpful info and he needs to know but between myself and my mom we had to guess on everything. Then if we were off by 3-4 months he would say “wait you just told me Dec of 2008 but this was Jan of 2009 so I am confused”. I wanted to say “just ballpark range it, I don’t know!!”

The point of this trip was to see why I have lost my ability to walk (which has improved slightly), if lyme is the cause of the issue, and also to get different pain meds such as the fentanyl patch and refill xanax. Well being a nature path he was unwilling to fill any prescriptions. He also said he’s only treated 6-8 patients with antibiotics for Lyme and he was not willing to help me with that he would just send me back to my LLMD.

His advice on the walking issue was to “see my primary doctor or neuro” …well duh but they do not believe in Lyme that’s why I came to you! His advice on getting my prescriptions was to “see my primary doctor”. I asked his advice on what supplements he recommends that would benefit me being so ill that I do not already tale on my long lost I handed him…. his response “why are you taking two forms of turmeric”. So basically no answer.  Thanks for nothing.

He wanted all new blood work for everything and didn’t really care that my LLMD said I have chronic lyme, babesia, bartonella he wants to have his own tests done. I almost felt like he was an IDSA doctor. I mean I know he believes me but he wants solid proof before he treats me with whatever meds (supplements) he says he can help get me “normal” again. His nurses said he “works miracles” and I have heard he does so that is the only reason I am trying him out.

My quality of life is poor and feeling like dying daily and never seeing the outside world is no way to live. When I tell the doctors how I live I know they think I am exaggerating but I am not. My day can be summed up in one sentence; I wake up, walk to the living room to lay in my chair to watch tv, eat dinner, and then go to bed and lay there until I fall sleep if I can…period.

The pros: The doctor did rule out any mold issues. He also said my herniated discs in my c-spine and back are most likely from lyme disease which confirmed what my LLMD told me. He ordered too many blood tests to write here or remember so there will be a ton of results in 3 weeks to go over. He did say he can help me with my thyroid.

So once again I left another doctor office feeling just as lost and confused as always. I hope he will find something solid in my blood work and he will at least try to help me instead of sending me back to my LLMD. He is the same guy I called 6 months ago for an appointment and he said I was “too complicated to treat”. I told him this time I just want to try his methods of treatment out if he could just give me an appointment but I can tell he doesn’t want to treat me.

Now all of the above sounds like a bad day but to me I look at the positive from the day. I was able to get out of the house, the clouds in the sky were beautiful and I got some fresh air. So it wasn’t a bad day at all. Took a shot of the car ride and sky and was able to edit the picture below. Enjoy the little things and always try to smile.


clouds sac


– Have a wonderful week and hugs to all of you in pain and feeling alone.