Living happy despite Lyme and other things!!: Living happy despite Lyme and other things!!: Am s...: Well it is now 2013 and I am starting to feel more positive about how all this will turn out. I found out last year that I did in...
9 weeks now on IV antibiotics and not any significant improvement in symptoms. In fact I have been feeling much worse many days which may mean the bacterial spirochetes are being killed off and I am experiencing a HERX reaction from the 2 strong antibiotics. In a few more weeks I will hook up with my Lyme specialist and see what his thoughts are and where we go from that point. Maybe add in some supplements or change up or add in another antibiotic to break up the spirochetes that have been chased into the cyst form of the disease.
Will write in another post after my appt with the doc.
In the meantime, I keep on keeping on!
Tuesday, January 29, 2013
Thursday, January 10, 2013
Living happy despite Lyme and other things!!: Am starting more treatments next week to see if t...
Well it is now 2013 and I am starting to feel more positive about how all this will turn out.
I found out last year that I did indeed have Lyme Borrelosis that was found in a direct blood culture back east. I have had severe head pain and neurological symptoms for almost 3 years; the most debilitating I have ever been. But I have been working with a great Lyme literate dr. and have been on IV antibiotic now for about 6 weeks now. It is a slow process to kill off the bacterial spirochetes but both my husband and I are trying our best to take it a day at a time.
The bad news of course, all the treatments, PICC line etc. is being paid for out of pocket all because of the IDSA ( Infectious Disease Society of America) and the CDC are running the whole "show" here and have set up the guidelines going on 12 year old false science for the health ins. companies not to cover the cost of people like myself who has probably had Chronic Lyme Disease for many many years and didn't even know it.
My husband and I have written to politicians including the President and others to see if something can be done to change these horrible guidelines. Nothing so far but I am still hopeful if enough people get involved and call and write their local and national politicians. What we really need it is a famous person to be a spokesperson for us. That usually gets the most attention.
In the meantime I am just mostly trying to concentrate on getting to feeling better again and getting out and enjoying life more and to the fullest. I am only 53 years old and long to again see my family back east including my very elderly parents and enjoying traveling and sightseeing with my husband and 7 year old Chocolate Lab again.
One must remain hopeful and positive.
Best wishes to all of you who are very ill and have had to experience a lot of what I have had to. It teaches you a lot about life, yourself and others and hopefully makes you more understanding to other people's plights in life and more forgiving of those who don't understand what your going through, get mad because they can't fix you and then just get downright mean and cruel.This truly is all a challenge!
I am extremely thankful for a wonderful and supportive helpful husband, many family members and friends who have just listened, tried to understand and still love me through it all.
A happy and healthy or healthier New Year to all who read this!
I found out last year that I did indeed have Lyme Borrelosis that was found in a direct blood culture back east. I have had severe head pain and neurological symptoms for almost 3 years; the most debilitating I have ever been. But I have been working with a great Lyme literate dr. and have been on IV antibiotic now for about 6 weeks now. It is a slow process to kill off the bacterial spirochetes but both my husband and I are trying our best to take it a day at a time.
The bad news of course, all the treatments, PICC line etc. is being paid for out of pocket all because of the IDSA ( Infectious Disease Society of America) and the CDC are running the whole "show" here and have set up the guidelines going on 12 year old false science for the health ins. companies not to cover the cost of people like myself who has probably had Chronic Lyme Disease for many many years and didn't even know it.
My husband and I have written to politicians including the President and others to see if something can be done to change these horrible guidelines. Nothing so far but I am still hopeful if enough people get involved and call and write their local and national politicians. What we really need it is a famous person to be a spokesperson for us. That usually gets the most attention.
In the meantime I am just mostly trying to concentrate on getting to feeling better again and getting out and enjoying life more and to the fullest. I am only 53 years old and long to again see my family back east including my very elderly parents and enjoying traveling and sightseeing with my husband and 7 year old Chocolate Lab again.
One must remain hopeful and positive.
Best wishes to all of you who are very ill and have had to experience a lot of what I have had to. It teaches you a lot about life, yourself and others and hopefully makes you more understanding to other people's plights in life and more forgiving of those who don't understand what your going through, get mad because they can't fix you and then just get downright mean and cruel.This truly is all a challenge!
I am extremely thankful for a wonderful and supportive helpful husband, many family members and friends who have just listened, tried to understand and still love me through it all.
A happy and healthy or healthier New Year to all who read this!
Wednesday, July 11, 2012
Saturday, November 19, 2011
Livin happy despite Lyme and other things.
November 19, 2011
I don't write often enough in my blog because of these debilatating daily headaches which have lasted over 2 years and a yucky stomach and losing 30 pds. My Lyme specialist is trying to figure out what is going on including the active Epstein Barr virus being very active again and a high red blood cell count. He mentioned something about meningitis and petite mal seizures.
I had 14 vials of blood taken the other day and 2 CT scans of my abdomen and chest in which they found a small nodule and are following that.
I try to live every day one minute at a time dealing with this and not being able to go out much, socialize or drive a car.
I wonder if my quality of life will return and I can at least go out walking with my husband and dog again without falling or having excruciating pain in my head.
I am hoping to be able to attend my nephew George and his fiance' wedding next March.
One day at a time.
No anger, no grudges....just crying sometimes to release the pain and frustration of it all. And trying to keep in touch with my family and friends over the phone, via email or letters.
I don't write often enough in my blog because of these debilatating daily headaches which have lasted over 2 years and a yucky stomach and losing 30 pds. My Lyme specialist is trying to figure out what is going on including the active Epstein Barr virus being very active again and a high red blood cell count. He mentioned something about meningitis and petite mal seizures.
I had 14 vials of blood taken the other day and 2 CT scans of my abdomen and chest in which they found a small nodule and are following that.
I try to live every day one minute at a time dealing with this and not being able to go out much, socialize or drive a car.
I wonder if my quality of life will return and I can at least go out walking with my husband and dog again without falling or having excruciating pain in my head.
I am hoping to be able to attend my nephew George and his fiance' wedding next March.
One day at a time.
No anger, no grudges....just crying sometimes to release the pain and frustration of it all. And trying to keep in touch with my family and friends over the phone, via email or letters.
Wednesday, April 6, 2011
Living happy despite Lyme and other things!!: 2nd Post
Living happy despite Lyme and other things!!: 2nd Post: "I guess it has been several months since last I blogged. Seems I got this mono virus back full force and it has been kicking my booty!! Making me very uneven and giving me sometime excruciating headaches.
The weather is nice now and my patience is getting a little tested since I want to go out and walk more and ride my bike and so on and so forth. I love Spring. I guess I just need to be a little more patient and take it a day at a time.
Friday, December 10, 2010
2nd Post
December 10. 2008
I try to live each day with hope and courage and will not Lyme disease define me as the person I am. In fact I think I have come to live life fuller and deeper and appreciate each day for as many sicknesses I have come to know with the compromised immune system I have. I also learned about listening more and empathy from my sister whom died at age 54 from advanced Breast Cancer to the bone. She also had RA.
I know people with chronic long term Lyme have worse off Immune dysfunction and are bedridden or worse. I have had a few of those days but I try to keep moving and living and try to remain postive ( i do have my days of being human and just want to cry a little on the worse days). Thankfully these have been not that many.
Part of chronic illness can be situational depression.
But I try my best to do everything I can to feel better with professional help from the outside sometimes.
I also know and have also known that physical and mental states go hand and hand.
I have a deep faith and God and so far he has not given me more than I can handle.
That is not to say that many days have been rough and hard on myself and even more so my husband and life partner. To watch the ones you love suffer and linger sometimes is very hard.
I think my attitude that I will feel better and am trying my best gives him assurance and more courage also.
I try to live each day with hope and courage and will not Lyme disease define me as the person I am. In fact I think I have come to live life fuller and deeper and appreciate each day for as many sicknesses I have come to know with the compromised immune system I have. I also learned about listening more and empathy from my sister whom died at age 54 from advanced Breast Cancer to the bone. She also had RA.
I know people with chronic long term Lyme have worse off Immune dysfunction and are bedridden or worse. I have had a few of those days but I try to keep moving and living and try to remain postive ( i do have my days of being human and just want to cry a little on the worse days). Thankfully these have been not that many.
Part of chronic illness can be situational depression.
But I try my best to do everything I can to feel better with professional help from the outside sometimes.
I also know and have also known that physical and mental states go hand and hand.
I have a deep faith and God and so far he has not given me more than I can handle.
That is not to say that many days have been rough and hard on myself and even more so my husband and life partner. To watch the ones you love suffer and linger sometimes is very hard.
I think my attitude that I will feel better and am trying my best gives him assurance and more courage also.
Tuesday, November 30, 2010
This is my first day setting up and writing a blog
My name is Marian and I live in Grass Valley, CA-age 51
I was diagnosed with Lyme disease in 2004. So many drs. told me it was all in my head and others just "Fibromyalgia"....a garbage can diagnosis when the docs don't know what is really wrong or won't take the time to dive more into it all. My immune system was always a little funky and I did not even go to a real Lyme knowledge filled professional until after my oldest sister died at age 54 in 2003.
I have so much to tell you all out there but I will leave it for later Blogs!!
I was diagnosed with Lyme disease in 2004. So many drs. told me it was all in my head and others just "Fibromyalgia"....a garbage can diagnosis when the docs don't know what is really wrong or won't take the time to dive more into it all. My immune system was always a little funky and I did not even go to a real Lyme knowledge filled professional until after my oldest sister died at age 54 in 2003.
I have so much to tell you all out there but I will leave it for later Blogs!!
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