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Old 01-24-2010, 05:57 PM   #1
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Lyme story

Each day began with the same misery--The daunting realization that yesterday never actually finished--That today is just an extension of the pain of yesterday and the day before that. There were no nights. There were only dark days.

It was a slight pressure in my head and not at all disagreeable. It created a somewhat euphoric state that remained unchanging for several months. As this progressed, it morphed into extraordinary pain. Soon, my body was overcome and ravaged by this inconceivable agony! The joints of my upper half exploded with the deepest ache. Every moment I wished for death, or felt it was upon me.The coming months would be a trial of my mental and physical endurance. The experience has changed me from the core of my being. I lived moment to moment trying to understand what was happening through the mental fog and the horror of soreness and confusion. I was perplexed, and disoriented--unable to perform the most simple tasks, and mystified as to why. What made me forget what I was doing, where I was going and what I was saying? Why was everyone telling me it was in my mind, and that depression and anxiety was getting the best of me?

I had been invaded and infected by Borrelia burgdorferi, a spirochete bacteria spread by ticks commonly known as Lyme Disease. I was relieved by the diagnosis, with my understanding that I could be cured. Unfortunately, even after treatment, each day brought a whole new set of horrors. Time just did not make sense anymore. The sight of a clock was startling--As if my clocks moved only half as fast as the others. How could every time piece be wrong? How could I still have six more hours of work today? Why isn't it dark yet? As if darkness would bring rest, sleep, or relief. It did not. This was incomprehensible to me.

I had been diligent about protecting myself against this infection for most of my life. I grew up in rural New York, and spent hours a day roaming the densely deer populated forest. I became lax in my safeguarding while hiking the more remotely populated areas of Upstate. Slowly, I noticed becoming fatigued more easily. Odd sensations and spasms were a daily occurrence. Soon came the depressing realization that even the slightest incline may as well been Mount Everest. I just couldn't make it out there any more.

My physician was not particularly interested in treating the pain aspect of this disease. I don't advise leaving patients without at least occasional respite from this unrelenting torment. He has pretty much left me hanging after a short treatment without discussing any future options. He said, "Your'e cured".--Then why do I still feel like Ive been hit by a truck.

I am unsure about my recovery but do find that my clocks are keeping better time. The days end and night actually comes. My physical endurance has improved, and the mental fog has somewhat lifted. I look forward to playing in the mountain forests again someday, pain free and with the new perception that life should be measured in moments, not years. I look to the time when rest can be found in the peaceful stillness of night, when dawn is renewal, and today will not just be the pain of yesterday. I hope Yesterday will be a new day for me.

 
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Old 01-25-2010, 08:46 AM   #2
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Re: Lyme story

Kristine, I read your story and I am sorry you are having such a rough time. What kind of Dr would say "your cured", when you are still having problems? Are you seeing a Lyme Literate Dr? I am seeing one in Hyde Park.

 
Old 01-25-2010, 11:22 AM   #3
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Re: Lyme story

His office kind of left me hanging here. I am still in terrible pain. Work is extremely difficult.

Last edited by moderator2; 01-25-2010 at 11:26 AM. Reason: please do not solicit private messaging, as per the posting policy

 
Old 01-25-2010, 12:41 PM   #4
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Re: Lyme story

Kristine, maybe you should get a new Dr if this one is leaving you hanging. A Dr is supposed to help you, and thats why I ask if this Dr is Lyme Literate, because if not, they dont want to deal with Lyme.
Any chance of you going on disability for awhile? Did they give you anything for pain? I have 2 different prescriptions for pain alone.

 
Old 01-25-2010, 08:13 PM   #5
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Re: Lyme story

Im starting a new job on Monday. The pain drove me to the point of hallucnations and almost incapacitated me. I used to cut and haul wood, build rock walls, hike for days....I used to run miles and work all day, I have tremendous trouble standing for 9 hours these days at work, its pure will and mind over matter that I dont fall on my face, because Ive come close . I took weeks off. He gave me 3 weeks oral doxy. They said they dont do IV unless the joints are involved. I said, "Is anyone hearing me? My joints are exploding" then he gave me one more week of oral doxy and Mobic which does nothing and did my blood work. They didnt call me and I called back in 10 days. He left a message said Im better, and thats it. This was weeks ago. I was getting better, but now, the symptoms are back to where they were and getting worse in some ways. I believed him that I was better, but todayy was the worst day Ive had in months. I just figure Im not gonna make it through this. I am angry but Im so tired and it hurts so much that I dont care anymore
Thanks for the response

 
Old 01-26-2010, 07:48 AM   #6
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Re: Lyme story

I care Kristine. You need to see a Lyme Dr. You cant let this go and give up. You can and will get better with the right people helping you. I would be very angry at that Dr too!

Last edited by moderator2; 01-26-2010 at 07:52 AM. Reason: posted contact info - please read the posting rules

 
Old 01-27-2010, 09:26 AM   #7
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Re: Lyme story

Your story sounds so familiar, hours used to feel like days to me, nights gave me no peace

There is a way out with a Lyme Literate Practitioner.. unfortunately the illness plays with the mind giving us little energy to find a way out but you must get appropriate help.

I am over a year into treatment after having this for a long time, not perfect but able to function with some limitations but my mind is back for the most part.

Get help, don't accept a provider giving up on you

 
Old 01-28-2010, 07:17 AM   #8
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Re: Lyme story

Thanks to both of you. I will seek treatment with another physician. People make you believe that this is a mental thing (Even when half your hair falls out and you forget what you are saying mid sentence all day long). But I generally keep a very positive attitude despite what my friends and family think. I go to bed "knowing" I will not wake up with this tomorrow, but there it is to some degree the next day. How could each day be soooo different? The pain levels vary dramatically. My social life has literally disappeared.

Now with months wasted with a useless physician, Im beginning a new job still sick. If I cant make in in the new job, I will lose the last of what I own. I m ashamed to complain when I can still walk and talk, I know there are so many suffering with more serious ailments.--But my life is 1/10 of what it was.

Thank You for listening
Kris

Last edited by xxxKristinexxx; 01-28-2010 at 07:18 AM.

 
Old 01-28-2010, 07:22 AM   #9
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Re: Lyme story

Kristine,

We are not allowed to post Lyme doctors names on the board. And I think you are still to new to the boards to use the private messaging.

But you can search from where you are sitting for a Lyme support group in your area. And see if someone can give you the name of a Lyme Literate Medical Doctor (LLMD) in your area. There are a couple around your area.

Majority of them do not take insurance.

Hang in there, it is very hard to function feeling like you do.

Sending you hugs and Prayer's.

Jodie

 
Old 01-28-2010, 08:24 AM   #10
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Re: Lyme story

Kristine... Please do some searching for a lyme literate Dr. Like jojo said. You can get better with a good Dr, and not one who is afraid of the politics.
Hang in there and let us know how you do.

Last edited by moderator2; 01-28-2010 at 08:59 AM. Reason: to remove an inappropriate discussion of these forums

 
Old 01-28-2010, 08:38 AM   #11
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Re: Lyme story

From what I have seen Lyme Docs are harrassed alot cause of the protocols they use. If we post names on here it only sheds more finger pointing ect on them. Many of them wind up in court and lose their license.

There are only a hand full of them out there. Let's protect them all we can....

Jodie

 
Old 01-29-2010, 04:53 AM   #12
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Re: Lyme story

Jojo. I didnt realize that was the reason for not posting names. It makes sense to me now and I agree we need to protect the good Dr's. I guess I need to read before I make comments. I apologize for that. It was my frustration coming through with the obstacles people face in trying to get well, because of politics and money.

Kristine.. How are you doing today? Did you find a Lyme Dr in your area?

 
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