Yeah, so what.....its been awhile. I know. I am trying to ignore the Lyme thing. Its bee too long, met too many other people who have it or think they do or are seriously ill from it. So sad. Still frustrating!
I went for another Dr visit this summer. He thought I was almost done with it. He is a bit late getting back with test results though. Anywho, the tests show I still have Barbesia and 4 Lyme bands. I didn't call him yet to see whats next. One part of me says forget about it and the other part knows better.
Lyme sucks, no if's and's or but's about that.
I was on the 2 weeks on meds and then 2 weeks off but now I think that will change. Can't wait for this to be over, but then again I am afraid to get bit. Actually had a tick on me yesterday, in my ear.
Never felt it but I think I got it before it attached.
I hate them. I think we can live in the world without ticks......
till next time
Thursday, October 21, 2010
Wednesday, April 7, 2010
so far so good
I am feeling much better, lots of energy, head really clear, easy to remember things at work, body aches very little. I still have sutle symptoms, off the doxy, wishing I could take it thou, had lots of Herx with it but that means it was doing a good job killing them off.
Tick season is beginning and I find myself scared to have them on me again. I want to find some all natural product ( maybe make my own) to put on, maybe some essential oils in suntan lotion, I will have to experiment to see what helps. Pets need to be treated also.
So far so good. We will see next month how its going.
Tick season is beginning and I find myself scared to have them on me again. I want to find some all natural product ( maybe make my own) to put on, maybe some essential oils in suntan lotion, I will have to experiment to see what helps. Pets need to be treated also.
So far so good. We will see next month how its going.
Thursday, March 11, 2010
sad
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.
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, 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.
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