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| Please excuse the errors on this page it was typed outside geocites and i dont have the energy to retype it. and the info is important. | |||||||||||||||||||||||||
| After 2 weeks of IV treatment, recieving 2Grms of rocephin a day I was beginning to see a marked improvement. I had 3 really great days and thought I was recovered.; It dosent happen that fast though. On the forth day I crashed. And crashed hard. My back was killing me, I was again exausted, my legs hurt and I was in bed again for 2 days. My nurse said that this was normal and I shouldn't do to much when I feel good, because my body wasn't up to it.; By my last week on the IV the improvement was remarkable. I wasn't fully myself yet - but I was able to drive longer distances and even went to a wedding. I danced and had a great time. Two days after the wedding my 28 days on the IV ended. I began to have symptoms again and they were noticeable.; My family was very disapointed and wanted me back on the IV. So did I.; But of course my wonderful doctor had different views.he told me I had my share of antibiotics and was not getting anymore. My primary care sent me to another specialist - an associate of the first - He decided I had enough and was not getting any more antibiotics, no matter how bad I felt.; He also decided I don't have Lyme, because my knees weren't swolen enough to extract fluid.; He is testing me for Fibromyalgia, cronic fatige syndrome, lupus and a host of other things. In the mean time I am without antibiotics and I feel like a junkie | |||||||||||||||||||||||||
| July 23, 1999; - Ok people - no way am I going back to work anytime soon.; I have accepted the fact that the road to recovery is a little longer than I thought. I have been without IV since July 14th - am waiting again for ins. Co approval.; I am on oral ceftin and biaxen 1000 mgs each per day. I would love to tell you I feel great - but sorry I cant. | |||||||||||||||||||||||||
| June 19th, 1999 --GOOD NEWSI am back on IV - My new infectious disease doctor is wonderful. He understands the disease and more important knows how to treat it. How I wish I would have gone to him 2 months ago. I started the IV yesterday and not a moment to soon. I was in so much pain - had a headache for 4 days and my back, arms and legs were hurting so bad I could hardly walk. I can't believe the other doctors, were sending me away in that condition, since all the other tests they took came back negative, they assumed its all in my head - like it's my choice to feel like crap. If your doctor is like the ones who delayed my treatment, who misread my labs who think its all in your head - if he really thinks this disease can be cured with 28 days of IV - run as fast as you can and find a real doctor. There attitude has cost me so much. Between Co payment to them and missing work - I am very fortunate to have 18 weeks disability at full pay. But because of the delay in treatment my time is running out. If I was treated properly from day one - i would be back at work by now. | |||||||||||||||||||||||||
| I am on week 7 of IV therepy I have not had any problems with my insurance company yet. They have approved me through 8 weeks. I am not feeling well though the whole month of June has been very bad. My biggest problem now is insomnia. Its worse than ever. I cant get to sleep and when I do it is disturbed by nightmares. Every joint in my body hurts at bedtime my arms and legs tingle and I just want to jump out of my skin. I try streching my legs and arms but nothing helps. I havent slept well in weeks and I feel like a zombie. Late night TV's not bad though I love politicaly incorrect and could never stay up late to watch it - so thats a plus!! Then theres Craig Kilborn on the late late late show - love him! I am just lucky I dont have to go to work or I dont know what I would do. I have one more month then I have to go back - I pray i feel ok by then!! | |||||||||||||||||||||||||
| On July 21,1999 I had one of the worst episodes I have ever experienced. It has been a year this month since i was first infected - guess the spirochites were celebrating their birthdays: | |||||||||||||||||||||||||
| I have had Lyme for a year now and have never experienced this before. I felt as though I was drunk - I was like my brain was jello. It felt like my brain was not attached to my skull - if I moved my head it took time for my brain to follow. I was dizzy and could'nt walk straight. When i closed my eyes - I could hear them inside my head - it was a kind of scratching sound - like paper crumbleing - I lay quietly and tried to find a logical reason for the sounds. I noticed I heard it only when I blinked my eyes or moved my eyeballs. At least I am not hearing voices!! I am hearing my eyeballs move. I really thought I was craking up for sure this time - My head and neck were hurting bad - but the strange feelings in my head were the worst. I thought about going to the ER but was sure they would have put me in a rubber room!! | |||||||||||||||||||||||||
| I was so exausted from this I fell asleep - i slept for 2 hours (wow) and woke up sweating and terrified from a nightmare - i was more exausted than before I fell asleep. the night continued this way - sleeping for 2 hours at a time and wakeing from a nightmare. I am telling you these guys were having a party in my brain. | |||||||||||||||||||||||||
| I really was terrified - I had gotton so little sleep for so long and when I do sleep it is full of nightmares. I called my doctor and he was sympathetic to my problem but reminded me of the nature of Lyme and that this is just another symptom. In other words - take 2 antibiotics and call me in the morning. | |||||||||||||||||||||||||
| Today is July 23, and as fast as those crazy symptoms started they stopped. My head no longer feels like jello - I am no longer depressed or frieghtened and I slept last night for maybe 7 hours with no wierd dreams at all. I guess their party is over!! Thank God. I am still very tired as usual and know that this may happen again - but at least I will be prepared for it as it is just another unpleasant symptom of Lyme disease - People spend lots of money on alcohol and mind altering drugs to have the kind of experience I had. Go Figure!! | |||||||||||||||||||||||||
| July 29, 1999 -- It seams that everyday in the life of a lymie is a new adventure!! I had a good day this week - slept well and cooked and did some cleaning - even entertained some friends that evening. The next day I was confined to bed. My neck and back were in terrible pain. I couldn't turn my head and no pain killer or massage was helping the pain. I am still in pain today and wonder what tomorrow will be like. I have what I have come to call my "outing" today a trip to the Dr.'s office. I should get the results of a second western blot my insurance co. ordered and results for co-infections that I ordered. I am having adverse reations to the Biaxon and want the rocephen IV back - all I can do is wait. | |||||||||||||||||||||||||
| August 7th, My tests came in - Negative ELISA and Positive - IGM bands 39 & 41kd - dont know what the insurance companies are going to do - will they say I have a false positive Weatern blot or a flase Negative ELISA - who knows. I am still on orals and this has been a decent week - | |||||||||||||||||||||||||
| please go to the update page for the latest entries on my life with lyme. | |||||||||||||||||||||||||