sunshine4ere
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| Rank | Member |
| Online Status | OFFLINE |
| Member Since | 09/29/2009 07:29 AM |
| Last Online | 05/19/2013 04:30 AM |
| A little about me: | NOW MY JOURNEY WITH LYME I have been suffering for nineteen months with what appears to be Lyme but I have not been diagnosed. I live in Canada and the testing is not the best...I've had two negative results. Also they think Lyme is very rare. I am 55 yrs old and worked as a postmaster for 28 yrs, love working with people. Haven't been able to work since getting sick. I have a wonderful, supportive husband, two children and three teanage grandchildren. I believe that nothing can happen to me that God does not allow for some reason and I know that my life is totally in His hands, so I have nothing to worry about. That being said, I am human and so once in a while I say, "you still have me in your hands Father" and He gives me a little reassuring squeeze. Time for a little update, I am now 56 yrs old as of Dec. 25th 2009. Just before Christmas I was diagnosed WB IGM positive for Lyme IGG was not definite. I finally as of February 2010 have found a ID doc who treats Lyme in Toronto. He was wonderful. He tried me on a mixture of three abx but I continue to deteriorate. I see him again on March 26th 2010 and am hoping he will have me put on IV abx so that I can walk again. I've heard of others that took abx IV and were able to walk so therefore I want to try whatever I can. I got my call to have my picc line installed for April 20th 2010, I couldn't be happier, I am willing to try anything to have my life back. I have been on IV abx now for six weeks and I am noticing a lot of improvements, I am also supplimenting with oral abx, Zithro at the moment. My walking is improved as is my cognitive. Any improvements make me ecstatic!!! Okay after two months on IV abx, I am now walking...wow..YAH!!! I know this is a long profile but here goes...I'm now starting my 6th month of daily IV abx plus oral zithro500mg and last month my Lyme doc added oral 1000mg of Flagyl. Been feeling sickly from the Flagyl lots of head pressure, ear pressure and body pain...hopefully it is just the meds working on my system... I had my biggest breakthrough cognitively in November after being so sick on Flagyl. November 2010...I will never forget...this is the best I have felt in so long...I am walking everyday, my mind seems so clear and I feel like I've been given a reprieve. I feel so blessed and so strong. Dec 2010...I've been put on Levaquin and within a few days I am in agony with my tendons in my arms...I discontinued the Levaquin after only 8 days but the damage has been done....I am not as well, I have slipped back and my pain is excrutiating. I was put on pain killers for it but it doesn't help. Nothing seems to help. This is so hard...even my cognitive is slipping. February 1st...Dr. B. pulls my picc line and tells me that abx has done all that it can for me. I don't know it at the time but he is under investigation by the College of Physicians...because of treating Lyme Disease. I am perhaps 85% better than before. Now I have 5 lesions on my frontal lobe instead of 1 and 1 of them is deep, but he said I'll be okay. I am happy that I have come this far...it is now April 2011...I am doing fairly well, I am on Meloxicam for my Lyme Arthritis...my cognitive is what I work on daily. I have speech and memory problems...perhaps due to the lesions on my frontal lobe...which affects memory and speech. If I am overtired or stressed my problems become quite noticeable. I am so grateful for the help I received and my heart breaks for my Lyme doctor who is going through such a hard time as well as all the patients who are now orphaned because of it...this is so unfair. To have a doctor who truly cares and his hands are now tied.... It is now October 2011...I started IV Rocephin again and have another picc line installed. I cannot walk again..this time it is a major relapse and I am scared!!! |
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"For those who suffer without diagnosis, to bring attention to a disease that is denied, hope for new treatments and a cure. Just a way of saying I believe you and I care." |
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 | Sending hugs and prayers to you, my fellow Lyme Warriors.... Let us stand strong and united this weekend for Worldwide Lyme Disease Protest day... Let us speak the truth... the ugly, shocking, scary, unbelievable truth... Let us be heard... and Let us be healed. *hugs and prayers* purple |
| Hugs to all my fellow Lyme Warriors and Lyme Supporters :)~~~~~~~ Until the site problems are cleared up. ~~~~~Please use the GREEN REPLY button instead of the quick reply box when responding to a post.~~~~~ hugs and blessings, purple |
| Hi Lyme Group, I'm sorry for not being around so much the last month. A lot of personal issues came with the New Year. I hope you all are doing well and hope to catch up soon. Please always feel free to PM me if you need anything. Blessings and light - purple |
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My Diary
My Life One Day at a Time
Documenting my day to day living and adjusting to a disease that still bears no name for me. It may steal my body but it can't touch my spirit. I am blessed beyond when I compare my suffering to those I have met and friends I have yet to meet.
Documenting my day to day living and adjusting to a disease that still bears no name for me. It may steal my body but it can't touch my spirit. I am blessed beyond when I compare my suffering to those I have met and friends I have yet to meet.
| Title | Date | Views | Comments |
| Is it all in my head? | 10/27/2009 | 144 | 0 |
| Just a bit scared at times | 10/21/2009 | 152 | 2 |
| Will night tremors end? | 10/16/2009 | 244 | 0 |
| The Ones Who Love Us | 10/12/2009 | 124 | 0 |
| Things I am thankful for. | 10/11/2009 | 208 | 0 |
| The Zaps that are zapping my strength | 10/10/2009 | 146 | 0 |
| Thankful for the gifts in life. | 10/06/2009 | 161 | 1 |
| Time spent with my daughter and grandchildren. | 10/03/2009 | 131 | 0 |
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My Recent Posts
| SUICIDE PREVENTION HOTLINE!!!! | 03/28/2013 | ||
| Just got diagnosed with Lyme | 01/02/2013 | ||
| lyme and MS? | 12/30/2012 | ||
| lyme and MS? | 12/26/2012 | ||
| still in severe pain | 12/26/2012 | ||
| Scared to start IV antibiotics | 12/23/2012 | ||
| Scared to start IV antibiotics | 12/21/2012 | ||
| Scared to start IV antibiotics | 12/20/2012 | ||
| still in severe pain | 12/18/2012 | ||
| still in severe pain | 12/16/2012 | ||
| still in severe pain | 12/14/2012 | ||
| still in severe pain | 12/14/2012 | ||
| still in severe pain | 12/13/2012 | ||
| still in severe pain | 12/12/2012 | ||
| Waking and shaking anyone? | 12/11/2012 | ||
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