If I could only push rewind..............

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Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 10/17/2008 9:40 PM (GMT -7)   
I awake this morning like any other; push the snooze botton once more to clear the cobb webs from my ever cloudy mind. I drag myself from bed; knees week, muscles sore, and the ever present electrical shock running up the back of my neck exploding in my brain. I make my way to the bathroom; bending over to open the foscet; I run the water hot. As I rise to remove my cloths I stumble from the dizzyness. While running the water over my head; hoping to clear my thoughts, all I can think of is; how I am killing myself to live. You see the problem isn't that I'm ignoring my illness, but rather life will not stop and wait for me to get well.
 
Prior to Memorial weekend 2005 I was a healthy 34 year old married male with a precious 4 month old baby boy. I had never been sick in my life outside of the flu, or chicken pox. The last time I visited a doctors office was in high school for a routine physical. That all change when I returned home from my four day vacation to the U.P. of Michigan. While on vacation I went for a long hike through the woods, it was a beautiful weekend; 80 degrees, sunny, lush greenery, thick forrest. When I returned to the cabin, I noticed a crawling sensation on my back. I was surprised when I removed a tick; the size of a sesame seed. I promptly removed all my cloths and continued to remove 30 to 40 ticks in varing sizes. I remember thinking to myself; be sure to get them all or you could get Lyme disease.
 
The alarm sounds; I awake refreshed from my four day holiday weekend. Time to go back to work. The day was like any other; just your typical tuesday morning. By the late evening however I had suddenly come down with the flu. Nausea was the first symptom, then hot and cold flashes, then G.I. distress. Never being one to run to the doctor for every runny nose; I drank plenty of water and spent the rest of the night sleeping. I awoke the next morning to a pool of sweat in my bed; the pillow, sheets comforter, everything was just saturated with sweat. I call into work for the next three days; assured myself I'd be fine with some rest at home. By the end of the third day; I had to either see a doctor or return to work. I decide to return to work and I'd be over it before long. At many times in my life I have wished life was like a video tape; were I could just push rewind and go back to a point in time; I would make a better decision.
 
After weeks of no improvement I finally make an appointment with my family doctor. I explain my persistent flu like symptoms. However I do not show him the rash that has now grown to consume nearly my entire left buttox. At this point I'm still not considering my exposure with ticks to be of any concern. He gives me a basic physical, and drew some blood for a normal screening. He advised me to get some more rest and assured me I'd be over the flu before too long. I eagerly await the test results from my blood work. After about a week he called to say the results were normal; that I was as healthy as an ox. I informed him that I was not feeling better; in fact I was getting much worse. Bye now I was drenching my bed every night, dealing with insomnia, non stop ringing in my ears, headaches, loss of balance, and memory loss to name a few. For the next several month I returned to his office and complained of ever growing symptoms, to which he ran numerous test, including a Lyme test. All test results returned normal. For thirteen months I visited four doctors, drew buckets of blood, was poked and proded every way humanly possible; including being scoped from every opening, CT scans, MRI with and without contrast, Xrays, you name it. All normal. I remember thinking to myself, if I had lyme disease it surely would have shown up somewhere in all the blood work I had.
 
In a desperate search to find what was ailing me; I turned to the internet. I entered my symptoms into a symptom tracker of a popular health web site. I was surprised to see Lyme disease at the top of the page. I knew I had exposure to ticks, a rash, and numerous other symptoms, but I tested negative for Lyme disease. My next search entered was Lyme forums; which brought me to Healingwell. After another month of lurking and learning, I had finally convinced myself I probably had Lyme disease. I was now ready to ask for help in finding an LLMD; to which I recieved a few quick responces. Including someone name Ticker (bless your heart), and another member from my state; who was seeing a Lyme literate doctor in Milwaukee. Thankfully I finally felt I was moving in the right direction. My first visit with my new doctor was very positive he clinicly diagnosed me with chronic Lyme disease, drew more blood for a Western blot Lyme work up (through Quest) and started me on 2200mgs of antibiotics a day. After about a week he called to let me know my blood test was again negative for Lyme, however he stated the test has many false positive and false negatives; however he was convinced I had Lyme and to continue the treatment. After an early period of stong herxes I started to improve slowly. Over the next year I continued initially with the perscribed 2200mg of ABX a day, then reduced it halve after the first six months; to give my body a break. I have not been tested through IngenX or been tested for coinfections to this point. I know I should have by now; but I felt as long as he was willing to clinicly treat my Lyme, I could save my time and money. Besides he accepts my insurance, and they have paid for nearly everything to this point.
 
Fast forward to today. I now realise; although I respect and admire his knowledge. He is an ID doctor, that rides the fence between the IDSA and ILADS. I have made an appointment with what I believe to be a true LLMD, who follows the ILADS protocal. This brings me back to whole mentality of killing myself to live. You see I've been waiting for four months to see this new LLMD, the problem is he doesn't accept insurance. I live a modest life, and am barely getting bye pay check to pay check. Even though I can feel myself sliding back into the hole that is Lyme disease, I plan on canceling my appointment. I hope to rescedule for another time. However right now I only have enough to pay my mortage, I'm sacerficing my health to keep my family out of dept. Even though my wife knows I'm fighting this disease; and she is semi supportive. She has not taken the time to educate herself about the politics of Lyme, and can not understand why any doctor would not accept insurance. I've tried to explain it many of times, but she looks at me like I'm crazy. I've asked her to read the forum, or a book about the disease, but she seem uninterested. I don't think she realises just how sick I truley am. My son is going to turn 4 in January, and even though he is my whole world, raising a child while suffering with Lyme disease has been very difficult. My wife has been telling me she would like to have one more child, and wants to start trying now. I told her I want to wait untill I'm fully healthy again. I am also very concerned about passing Lyme disease to my child. I know the percentages are probably low, but I would not want a child to have to deal with this. My wife thinks I'm using the Lyme as an excuse not to have anymore children. I plan on purchasing a CD of Under our skin, hopefully she may finally understand how crazy this disease is.
 
If I could only push rewind...............Brandon 
  

Post Edited (anoyed) : 10/18/2008 7:14:45 PM (GMT-6)


Gretchen P
Veteran Member


Date Joined Sep 2005
Total Posts : 1784
   Posted 10/18/2008 3:05 PM (GMT -7)   

Brandon,

    I feel your heartbreak and pain. You should not be so hard on yourself, you are doing the best that you can. I also had a fairly unsupportive spouse.....until Under Our Skin. His outlook and understanding iof the politics has totally changed! Actually he is starting to waiver again so this means time to watch it again.

     Keep up doing what you and socking away some exztra money so you can get to your llmd. Some day this will all be over and our insurance wil HAVE to pay for all of this. I think if your wife watched the movie she would understand  your hesitancy towards having another baby. Good luck and happy healing!  Peace!


I'm gonna get that Lyme!!!!!!!!!!!
~~~~~~~~~~~~~~~~~~~~
 
I have lyme and I've got the papers to prove it!! Take that Wormser!
 
Wormser, who is that????? OHHHHHHH that's right he USED to be on the IDSA panel!!!


Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 10/18/2008 3:46 PM (GMT -7)   

I like the way you say this, poetic...

I feel the same way:

"You see the problem isn't that I'm ignoring my illness, but rather life will not stop and wait for me to get well."

Thanks for sharing your story.  Please do not hold yourself responsible for something that is such a societal issue-- you did the best you could given the information that you had.  And your posting is so well written- it will very likely help new readers to become more aware.

Tracy

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 10/18/2008 6:28 PM (GMT -7)   
Gretchen P,

Thanks for your responce :>) yesterday was one of those days; I'm sure you know what I mean. Thank you for your kind advice, I have been trying to set aside some cash when ever possible, but it's difficult. Hugs to you!!

Tallison,

Thank you also for your responce!! I did not realise it at the time; I was up late last night with insomnia. I guess it is a bit poetic :>) Thanks for your kind words!! hugs to you!!

The one huge change I've noticed in myself since having Lyme is huge mood swings!! Thank God for the few good days!!

Brandon

jginkc
Veteran Member


Date Joined Jan 2008
Total Posts : 692
   Posted 10/19/2008 1:16 PM (GMT -7)   
Brandon:

I could have written your post, only I didn't see any tick or get a rash or anything. I just got sick as a dog after spending a week in the Texas Hill Country and was misdiagnosed for over 4 1/2 months.

How I wish I hadn't gone there. How I wish we had stayed in town. How I wish these past two years were just a nightmare, and I would awake from it all.

I remember this weekend from two years ago distinctly - I jogged, we went way out of town to a pumpkin patch with the kids. I didn't have a care in the world.

If you have your health, you have everything. It's too bad you have to lose it to realize that.
Month 18 of Lyme and Bartonella
On Zhang, doing much better, but not there yet!

90% functional, feel about 85% of my former self.

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