Well, since I started on the new medications I have had some problems.
What seems like a bladder infection has come up negative, my body tries to get used to the new drugs, diarrhea, nausea, muscle pain and other things have come about. Not fun. I can't tell if its the Lyme dying off or if the new drugs are causing it. I am waiting to speak with my specialist again.
Its hard when your body is adjusting to new medications but it certainly isn't fun at all. Makes me just want to quit everything and walk away. I know I can not. I know there are people out there whose suffering does not compare but sometimes I can't help but be bottled up in my world.
When will this all end? I want my life back, I want to do the things I used to do without the pain and fatigue and the limitations.
I feel like I haven't been a good parent or wife. I feel very alone sometimes even though people surround me. I know tomorrow will be better, it always is. I just feel a bit sad today.
Thursday, March 11, 2010
Thursday, February 25, 2010
Visit with my Lyme Specialist
Wed. Feb 24th, we drove to see our Lyme Specialist in CT.
I was feeling much better and had in my mind that maybe, just maybe I would be getting of the meds. Not the case.
Dr. Sabovic went over everything, what symptoms do I still have? The whole list.....even though I feel 80% better than when I was first diagnosed we have a while to go yet. A new round of antibiotics, oh no, Doxy, so I have to be extremely carefull in the sunshine!
The symptoms that I still experience were lower back pain, hip pain, thigh aches and knee pain, upper back shoulder stiffness, pain, creepy crawly in my left shoulder, and a vibration in my right thigh. Although these symtoms are drastically reduced from when I first started treatment it still means Lyme is still there. I will be on some new supplements to help fight Lyme that may be encased in biofilm. If you read up on lyme you will understand. Antibiotics alone will not penetrate the biofilm so the supplements weaken the biofilm and allow the antibiotic to get inside.
So looks like another 2 months on so on this medicine (as my job allows) since I work in the sun a lot at the Greenhouse. Then maybe 2 weeks on and 2 weeks off. We will test in 2 months for Lyme again and follow that up when all said and done for 2 years to make sure it is all gone.
Though i am depressed that I still have awhile to go, I do feel much better.
Its hard to complain when I see people who are so disabled by Lyme and struggle daily to fight this horrific disease.
God bless you all. You are in my prayers.
I was feeling much better and had in my mind that maybe, just maybe I would be getting of the meds. Not the case.
Dr. Sabovic went over everything, what symptoms do I still have? The whole list.....even though I feel 80% better than when I was first diagnosed we have a while to go yet. A new round of antibiotics, oh no, Doxy, so I have to be extremely carefull in the sunshine!
The symptoms that I still experience were lower back pain, hip pain, thigh aches and knee pain, upper back shoulder stiffness, pain, creepy crawly in my left shoulder, and a vibration in my right thigh. Although these symtoms are drastically reduced from when I first started treatment it still means Lyme is still there. I will be on some new supplements to help fight Lyme that may be encased in biofilm. If you read up on lyme you will understand. Antibiotics alone will not penetrate the biofilm so the supplements weaken the biofilm and allow the antibiotic to get inside.
So looks like another 2 months on so on this medicine (as my job allows) since I work in the sun a lot at the Greenhouse. Then maybe 2 weeks on and 2 weeks off. We will test in 2 months for Lyme again and follow that up when all said and done for 2 years to make sure it is all gone.
Though i am depressed that I still have awhile to go, I do feel much better.
Its hard to complain when I see people who are so disabled by Lyme and struggle daily to fight this horrific disease.
God bless you all. You are in my prayers.
Tuesday, February 16, 2010
Please take some time to research Lyme Disease Watch personal stories online and on youtube and SEE that this is REAL
As I continue to feel so much like my old self I can't help but think about so many of those whose lives are changed forever because of Lyme Disease. I am actually quite lucky!
Like in the film "Under Our Skin" I have watched many home video's of people who have documented their children and other loved one's battle this horrid disease. Some get better, some still struggle daily to survive and others lose their lives. There are still people yet to be diagnosed and those of whom can not afford the high cost of treatment and are forced to slowly waste away until the end comes. This breaks my heart.
The toughest part is knowing that Lyme does exist along with coinfections and yet Dr's in most states are not allowed to treat it aggressively, the fight for legilation for proper treatment (including testing) and new guidelines (especially here in Massachusetts) for correct treatment are taking too long. Most insurance companies don't cover treatment and for many that means death.
We were lucky enough (if you can say that) to have some money set aside to get treatment from a Lyme Literate Dr out of state and be aggressively treated. That money is now gone and we have to use credit cards to get treatment. My husband should have had a direct PICC line of antibiotics because of his severe case but insurance would not pay. We could not afford $10,000 or more monthly for this treatment. Thankfully with an aggressive treatment plan(9 months so far)of daily medications and supplements his symptoms of not being able to speak and walk are gone. If he was never diagnosed he most likely would have ended up a vegetable in a wheelchair with a diagnoses of MS or Lou Gehrigs (which his primary care Dr did think it was).
He was tested many times here in MA for Lyme and none of them showed up positive. Only when he got the Western Blot test from IGENEX in CA did it show up. This is why correct testing is so important. Why Dr's here in MA don't offer you the Western Blot test is beyond me.
So this fight continues. A fight to get legilation passed, a fight to have insurance companies help pay for treatments and a fight to get this disease recognized as serious because it is more prevalent than AIDS here in the United States.
LYME IS REAL AND IT KILLS, please take time and watch personal stories online. Learn how we can come together to defeat this.
Like in the film "Under Our Skin" I have watched many home video's of people who have documented their children and other loved one's battle this horrid disease. Some get better, some still struggle daily to survive and others lose their lives. There are still people yet to be diagnosed and those of whom can not afford the high cost of treatment and are forced to slowly waste away until the end comes. This breaks my heart.
The toughest part is knowing that Lyme does exist along with coinfections and yet Dr's in most states are not allowed to treat it aggressively, the fight for legilation for proper treatment (including testing) and new guidelines (especially here in Massachusetts) for correct treatment are taking too long. Most insurance companies don't cover treatment and for many that means death.
We were lucky enough (if you can say that) to have some money set aside to get treatment from a Lyme Literate Dr out of state and be aggressively treated. That money is now gone and we have to use credit cards to get treatment. My husband should have had a direct PICC line of antibiotics because of his severe case but insurance would not pay. We could not afford $10,000 or more monthly for this treatment. Thankfully with an aggressive treatment plan(9 months so far)of daily medications and supplements his symptoms of not being able to speak and walk are gone. If he was never diagnosed he most likely would have ended up a vegetable in a wheelchair with a diagnoses of MS or Lou Gehrigs (which his primary care Dr did think it was).
He was tested many times here in MA for Lyme and none of them showed up positive. Only when he got the Western Blot test from IGENEX in CA did it show up. This is why correct testing is so important. Why Dr's here in MA don't offer you the Western Blot test is beyond me.
So this fight continues. A fight to get legilation passed, a fight to have insurance companies help pay for treatments and a fight to get this disease recognized as serious because it is more prevalent than AIDS here in the United States.
LYME IS REAL AND IT KILLS, please take time and watch personal stories online. Learn how we can come together to defeat this.
Monday, January 18, 2010
feeling better
Things are feeling mostly back to normal. I had a few days were I felt air hungry, some days with heart palapatations, forgetting things less but still here and there. I think that is one of the scariest things for me. When I truly forget something I did. Can't wait to be finished with all the meds. I still have some depression (working on it) but probably due to money stress. Things are getting much tighter with cash. Its nice to go to the specialist but I feel very strapped with my funds, not to mention I have a root canal going on and that is just more $$$.
Jeff is feeling better also, he is also stressed but is trying very hard to focus on his new job. He is doing fantastic at it. Somedays are harder than others, he still gets ringing in the ears, especially when he drives a lot.
We are both exercising a few times a week, trying to get back in shape for the summer. Can't wait to hit the beach, maybe surf, and Jeff can finally get some sun (he is off that medication)
Till next time.
Jeff is feeling better also, he is also stressed but is trying very hard to focus on his new job. He is doing fantastic at it. Somedays are harder than others, he still gets ringing in the ears, especially when he drives a lot.
We are both exercising a few times a week, trying to get back in shape for the summer. Can't wait to hit the beach, maybe surf, and Jeff can finally get some sun (he is off that medication)
Till next time.
Monday, December 7, 2009
LLMD appointment
My husband and I went to CT to see the LLMD. It was another follow up appt for my husband. He may finally be able to get the picc line IV medication that he desperately needs to attack the bacteria quicker. Hopefully our new insurance will approve. Sad when you have to be rich to get the treatment you really need. He is on differnt medication anyway, now he is eating dairy products and says he is feeling much better on these meds.
Lyme is one hell of a disease. YES IT IS A DISEASE that is hardly recognized and some say it is not real, that it does not exist. That shocks me. Ticks can carry so many bacteria that can slowly kill you or quickly kill you.
YES, IT CAN KILL YOU.
I wish that our recovery is much quicker than it has been. It is a long, painful recovery. Painful because of the Herxheimer reaction. Killing the spirochites produces a toxin in the body which usually makes the treatment feel like it not working, sometimes creating a more painful cycle that is much worse than you ever experienced. I must say that even though the pain is great, knowing those little bastard spirochites are dying off makes me happy.
Some day there will be a happy ending to all who have Lyme disease.
Lyme is one hell of a disease. YES IT IS A DISEASE that is hardly recognized and some say it is not real, that it does not exist. That shocks me. Ticks can carry so many bacteria that can slowly kill you or quickly kill you.
YES, IT CAN KILL YOU.
I wish that our recovery is much quicker than it has been. It is a long, painful recovery. Painful because of the Herxheimer reaction. Killing the spirochites produces a toxin in the body which usually makes the treatment feel like it not working, sometimes creating a more painful cycle that is much worse than you ever experienced. I must say that even though the pain is great, knowing those little bastard spirochites are dying off makes me happy.
Some day there will be a happy ending to all who have Lyme disease.
Tuesday, November 24, 2009
Shame on Me
Last night I slept so good, hardly any pain, which was making me toss and turn the for quite a few nights, and I really felt rested and ready to go. I went off on my errand to Pompret, CT about 60 minute ride. On the way home I was getting more and more tired. I had planned on doing some more errands but by the time I arrived home I was exhausted and just looking forward to a nap.
This is the disappointing part of LYME.
You feel good one moment and then completely different hours later.
I really shouldn't complain since my husband is sicker and he just keeps going regardless.
shame on me
This is the disappointing part of LYME.
You feel good one moment and then completely different hours later.
I really shouldn't complain since my husband is sicker and he just keeps going regardless.
shame on me
Monday, November 23, 2009
In the Middle of a Stupid Streak
Oh Boy, I am seriously in the middle of a stupid streak. Its hard to remember things, hard to find the words that I need to use, hard to spell simple words. What is even harder is at work they know I have Lyme but they don't understand the symptoms that come and go. I made quite a few mistakes Sat at work and was really embarrased about it. I jokingly said to my boss, its the Lyme disease, and she said yeah, sure, in a nice way of course. She is very sweet but so many people don't see you as sick cuz on the outside you look fine (most of the time) well, anyway I do. If I was falling down of slurring words they would understand better.
I am hoping I am not going to eventually lose my job.
I feel bad for my husband as his journey in recovery has been so much harder. He faces the same reactions in the people he meets and he is working his ass off for our family regardless. Hey I try to buy a winning lottery ticket but that just never happens. Oh Well, we all must go on, doing the best we can and dealing with life.
I am hoping I am not going to eventually lose my job.
I feel bad for my husband as his journey in recovery has been so much harder. He faces the same reactions in the people he meets and he is working his ass off for our family regardless. Hey I try to buy a winning lottery ticket but that just never happens. Oh Well, we all must go on, doing the best we can and dealing with life.
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