Still fighting the fight, :(
Sad but true, when you think its over, its not. But I am still fighting the fight.
Back on medications 2 weeks on and then 2 weeks off. I delayed getting back on them
due to a "turned 50" procedure that was recommended. So after that was done I got back on. 2 weeks I'm thinking great I don't feel any difference. Just when the 2 weeks were almost over I started with hip, knee and ankle pain along with one foot aching. Two days later (I had to unload 52 plant boxes from an 18 wheeler and by the time I was finished with 3 loads hauling from one place to the other I had to lay down. Hurting from head to toe I didn't move a muscle for about an hour on the couch, then I had to get up and unload each box and put thousands of plants away. I was totally exhausted and hurting for 3 days after that. I ended the meds on the 3rd day after that to begin my 2 weeks off. I did notice the pain diminish. So I am thinking that was all Herxing. We'll see when I begin my 2 weeks on again.
NOT LOOKING FORWARD TO THAT.
One thing I did do in October was another art/craft show for 3 days. When I do those I pass out free information on Lyme disease and most people want to talk. Its nice to just get educational material out there especially in MA.
I still travel (along with my husband) to Bridgeport, CT. to see our lyme specialist. He is amazing!!! We have helped so many others and we met one of the families on our last trip there. We (especially my husband Jeff) got hugs and kisses and praise from the mother and from the young man. He is on his way to better days. I love that part of it. HELPING OTHERS!! My husband does more of that for people he meets. Just to see happiness and relief that they have found some actual help.
Well onward and upward is all I can say now.
Fight the fight and never give up!
PEACE
Monday, October 31, 2011
Monday, March 7, 2011
Bad Girl
Well, since Lyme has drained most of our money and most Dr's in Massachusetts don't know much about it, we have missed appt's with our Lyme Specialist. Its hard when insurance does not pay for out of the "system" Dr's. At 250 dollars each, my husband and I, thats a lot of money to dish out. After being off the meds for two months, things have come back.
At times incredible joint pain in my hands, elbows, back and knees. Stabbing pains in legs and arms. I should be glad thats all thats back but we need to go back and get another round of meds. So we will be calling the Dr. soon.
I wish we could find a Dr in the "system that is as educated as our Lyme Literate Dr. But since MA recently passed a law for Dr's to treat it longer than they were allowed maybe someone is out there that the insurance will pay for. Thing is, how do you find them and how long can you wait. Switching Dr's is not fun either.
At times incredible joint pain in my hands, elbows, back and knees. Stabbing pains in legs and arms. I should be glad thats all thats back but we need to go back and get another round of meds. So we will be calling the Dr. soon.
I wish we could find a Dr in the "system that is as educated as our Lyme Literate Dr. But since MA recently passed a law for Dr's to treat it longer than they were allowed maybe someone is out there that the insurance will pay for. Thing is, how do you find them and how long can you wait. Switching Dr's is not fun either.
Thursday, October 21, 2010
Its been awhile!
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
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
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.
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