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good days and bad days...

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Posted 9/20/2010 5:21 PM (GMT -7)
ok for at least 6 solid weeks i have pretty much had at least 35 "lyme" symptoms or FM/CFS per day (take your choice because they seem to be virtually indistinguishable). Today I can count on 1 hand the symptoms that are bothering me. my observation/question is>>>

i know they will come back, maybe tonight, maybe next week (because they always do). on my "good days" i start questioning myself...am i really sick? (after all i don't have the blood work to back up any dx), was i really hurting THAT bad? good days makes me want to cancel all my doc appts. good days makes me "forget" the painful ones. good days DOES NOT keep me focused on getting a diagnosis and proper treatment. i start thinking to myself ok well maybe those symptoms where i felt like i could barely speak, ran a fever, pain in every joint, etc were "normal" and that everyone had days like that....

does anyone else feel this way? is it normal for lyme to wax and wane?
Posted 9/20/2010 5:45 PM (GMT -7)
Actually, the waxing & waning of symptoms is common. I had a lot of the same thoughts. You have no need to question yourself - even without blood tests to confirm a diagnosis. No one is supposed to feel this way!!

Please do work to keep yourself focused on getting the proper treatment!! You don't really want to get any further into the issues & symptoms of a more progressed position with these infections - take my word for it - please!
Posted 9/20/2010 6:36 PM (GMT -7)
I feel that way all the time. I feel really good or really bad. I can get up in the morning and think it is a pretty good day and crash at noon. I have long since given up planning too much ahead of time. We had tickets to see the Eagles and I was fine, 3 o'clock came and I was down for the count.

I have another webiste I enjoy. This woman has lupus, but it describes my life...other than I don't hike!

http://www.butyoudontlooksick.com/articles/written-by-christine/my-roulette-kinda-life/
Posted 9/20/2010 6:40 PM (GMT -7)
Oh, and find a doc willing to dig in and diagnose you..I agree with Traveler, get advice now. In the long run it will make it easier.
Posted 9/20/2010 8:21 PM (GMT -7)
Very common with me - though I've never questioned my illness... Sometimes I have several good days in a row and I nearly completely FORGET how bad it ever was... My memory is shot for the most part though - I can never even remember how I felt 12 hours ago, which is why it's important to document...
Posted 9/21/2010 10:53 AM (GMT -7)
I am the same - I have been questioning myself for nearly 5 years - I have seen LLMD. and have had a fairly short course of treatment. These day's most of my problems are muscle/joint related, but have experienced crazy mood swings - I have spent a day or two in bed in the past only to suddenly get-up and feel basically 'normal' !!

In the beginning I had definate monthly cycles of symptoms now it's all random. Very soon after the tick-bite my menses started to get irregular, I have now not mensruated for over a year. I question too could it all be 'hormonal' with no infection or is it the lyme messing with my hormones - I am 49 years old now {feel about 80 some day's] - but when it all started at 44/45 I was told by a couple of docs. that I was too young for menopause.
Posted 9/21/2010 6:01 PM (GMT -7)
ok just as i thought it would be back...it is....

today stiff neck, fever, just plain dont feel good, feel "toxic", back hurts, fingers hurt, toes hurt, ugh!!!!!!! thought i might hear from my doc on the lyme tests but nothing. i go for an MRI on my brain tomorrow. she ordered that to rule out psuedo tumor cerebri (which i had in the past) and tumors etc. seriously i would just love to feel good again!!! i know i am whining and no one has to respond...i think i just need to vent here on this forum.....kinda like a disease diary. turn
Posted 9/21/2010 6:21 PM (GMT -7)
I had my good days and bad days with lyme. One day I would feel good, the next day like dying. What helped me the most was taking whole food vitamins. Not the chemical stuff but real vitamins. I also drank acai juice, it's loaded with good stuff and it made me feel better. I ate garlic, drank a table spoon of apple cider vinegar, took vitamin d3, along with calcium and magnesium, hot steamy baths to kill the lyme and cold baths to combat the pain. I did everything I could think of and prayed, prayed, prayed. Well my test is negative now and I give all thanks and praise to God. My doctor gave up on me but God didn't! You are in my prayers tonight. You will overcome Lyme. Believe!!!
Posted 9/21/2010 7:43 PM (GMT -7)
I feel the same way. Just today, I woke up and felt like myself. I thought, oh, maybe I am cured! By noon, I was a mess! I could not think straight and my daughters' voices felt they were too loud and they were annoying me (ah, these sweet little voices) and I could not take it for a while, I just told my older daughter to color something bec she had so much energy, she was running me down. I drawed a picture of a prince and princess and she was quiet for a while, coloring. ALL MY TESTS(4 or 5 western blots and 2 elisa tests) WERE Positive by CDC standards, and I still doubt I have lyme, at times.
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