Saturday, August 11, 2012
Thursday, August 9, 2012
Ianna House
This would be a dream come true. A treatment place for patients with Lyme Disease to go for support during treatment. Wow. That would have been nice.
Check out the link.
Check out the link.
Tuesday, August 7, 2012
Monday, August 6, 2012
too humid...
Too......humid.....to....write.
Must ...have...lemon...water...and ....iced...green...tea.
Must ...have...lemon...water...and ....iced...green...tea.
Thursday, August 2, 2012
the famous 'round of doctors'
I have so many doctor's reports that I fill several files with them. I will try my best to keep them in sequence. This of course goes on for years, so I am afraid it will take several posts to cover it.
2002:
(June) So much pain and stiffness/weakness, I could not lift a gallon of milk. I made an apt. with my wonderful family physician, but he was not in that day. Instead, I had a P.A.. God was with me. She looked me over, asked me what was wrong. I told her I felt like either I had been hit by a truck or beaten with a baseball bat. All joints hurt, head hurt, I was shaky, weak, feverish, red in the face, etc. etc.. She immediately diagnosed me with Lyme Disease and put me on an antibiotic. She also did a Western Blot. No Elisa. Well, you know there is something up when the doctor calls you and asks you to come in to review the test results. It seems, the result showed and old infection and a new one. This was the first time I began to put the pieces together. I had both IgM and IgG antibody results. (this I will explain at a later time, when I get into test results and what they really mean) Now, understand, most people would dismiss this as unimportant, BUT, because I had this P.A., on this day, she knew what she was looking at. Why? Because she had Lyme Disease herself. Now, I was off to what turned out to be a long, discouraging journey of "yes you do", "no you don't" have Lyme disease. I was put on Biaxin and Plaquinel by this P.A. under the supervision of her specialist in Boston. (just FYI, this PA decided to leave the practice due to pressure from other doctors about her diagnosis of Lyme Disease with patients. They did not believe. I'll leave it at that)
(Dec.) MRI to rule out MS. This was just the beginning of the denial on the part of the doctors I was seeing. Of course it came out fine.
(Dec.) Apt. with an internist/infectious disease specialist at a local hospital. Result: maybe it is arthritis, it is not an infectious disease. There were so many mistakes in his report it was ridiculous. How could a professional doctor get it all so wrong?
OK, maybe one year at a time. I am getting tired, it actually takes me along time to pull out all my reports and put them in order, and write the basics. I have come a very long way in the last year, but if I push it, I still get mentally and physically tired. I'll stop so I can try to be productive the rest of the day, and have enough energy to make dinner later.
PS - I saved every little report, blood test, etc.., that I have had done, since the day I found out it was Lyme. I highly recommend everyone with Lyme do this. Also, keep a journal of your symptoms daily. Just a sentence if that is all you can do. I have 10 years worth of all of these. One day I hope to be able to make sense of the horrid journey this has become. If we all work together, we may make headway in the push for an understanding of this infection. (I prefer to call it an infection, not disease)
2002:
(June) So much pain and stiffness/weakness, I could not lift a gallon of milk. I made an apt. with my wonderful family physician, but he was not in that day. Instead, I had a P.A.. God was with me. She looked me over, asked me what was wrong. I told her I felt like either I had been hit by a truck or beaten with a baseball bat. All joints hurt, head hurt, I was shaky, weak, feverish, red in the face, etc. etc.. She immediately diagnosed me with Lyme Disease and put me on an antibiotic. She also did a Western Blot. No Elisa. Well, you know there is something up when the doctor calls you and asks you to come in to review the test results. It seems, the result showed and old infection and a new one. This was the first time I began to put the pieces together. I had both IgM and IgG antibody results. (this I will explain at a later time, when I get into test results and what they really mean) Now, understand, most people would dismiss this as unimportant, BUT, because I had this P.A., on this day, she knew what she was looking at. Why? Because she had Lyme Disease herself. Now, I was off to what turned out to be a long, discouraging journey of "yes you do", "no you don't" have Lyme disease. I was put on Biaxin and Plaquinel by this P.A. under the supervision of her specialist in Boston. (just FYI, this PA decided to leave the practice due to pressure from other doctors about her diagnosis of Lyme Disease with patients. They did not believe. I'll leave it at that)
(Dec.) MRI to rule out MS. This was just the beginning of the denial on the part of the doctors I was seeing. Of course it came out fine.
(Dec.) Apt. with an internist/infectious disease specialist at a local hospital. Result: maybe it is arthritis, it is not an infectious disease. There were so many mistakes in his report it was ridiculous. How could a professional doctor get it all so wrong?
OK, maybe one year at a time. I am getting tired, it actually takes me along time to pull out all my reports and put them in order, and write the basics. I have come a very long way in the last year, but if I push it, I still get mentally and physically tired. I'll stop so I can try to be productive the rest of the day, and have enough energy to make dinner later.
PS - I saved every little report, blood test, etc.., that I have had done, since the day I found out it was Lyme. I highly recommend everyone with Lyme do this. Also, keep a journal of your symptoms daily. Just a sentence if that is all you can do. I have 10 years worth of all of these. One day I hope to be able to make sense of the horrid journey this has become. If we all work together, we may make headway in the push for an understanding of this infection. (I prefer to call it an infection, not disease)
Friday, July 27, 2012
reality check
Once again I am reminded that reality is always different than the plans that we make. Vacation was great. Peaceful, hidden away from all civilization with no TV, cell phone, computer, etc., and I couldn't have been happier. But it is nice to be home. With my pets. The reality check came when I arrived, and was so tuckered out I couldn't hardly walk the hill to our cabin. Hiking was out. I was bummed. I walked every day, but no long hikes deep into the forest, which I love to do almost more than anything. Maybe one day, maybe not. I did get some kayaking in, and a little swimming. The weather was perfect. I am not 'on holiday' from meds this week, so I was dealing with side effects some of the time. Wouldn't it be nice to wake up one day and be able to do all the things I used to do? Now I really need a reality check.
Today my 9 yr. old nephew from Alaska is with me, and he got me good this morning. He said, in all seriousness, "why aren't you green?". I looked at him funny and said "why?". "Well, you have LYME Disease!!!" HA HA HA!!! Kids, he had a good time with that one. And I got a good laugh too.
Next blog, on to more serious stuff. I am contemplating my sequence of info., should I start with the basics about ticks (boring) or symptoms, or various doctors I've seen over the years, treatments, detoxing..... the list is endless and probably will end up out of order anyway. I am a Lymie after all.
Today my 9 yr. old nephew from Alaska is with me, and he got me good this morning. He said, in all seriousness, "why aren't you green?". I looked at him funny and said "why?". "Well, you have LYME Disease!!!" HA HA HA!!! Kids, he had a good time with that one. And I got a good laugh too.
Next blog, on to more serious stuff. I am contemplating my sequence of info., should I start with the basics about ticks (boring) or symptoms, or various doctors I've seen over the years, treatments, detoxing..... the list is endless and probably will end up out of order anyway. I am a Lymie after all.
Saturday, July 21, 2012
last part of story....re-visited
This is a re-post. Sometimes I need to re-visit where I have been, and what my path has been. I know some people have not looked back at these posts. When I read it I see all kinds of inconsistencies and out of sequence information. Another sign of my Lyme Head. I hope it's getting better as I go along. I wrote this about a year ago, but the events run from decade ago to two years ago. I have 'way more' details I did not share. Enough for a book...
My story is dragging on and I am truly writing the Reader's Digest Condensed version. I am leaving a ton of details out that I will fill in as I go along.
To finish up in a summary, I stopped seeing Boston Specialist and went on for a year or two feeling a lot better. I still had pain in my hip joints, some brain fog and of course the relentless fatigue. At some point I began to slip again. Slip into the pain, lethargy, inability to think, tiredness, and a number of other symptoms I could name, if I had my journals in front of me. I have been recording my everyday struggles and doctors experiences for 10 years.
I couldn't understand why I still felt crappy even after all that treatment. All I can say now, is that the treatment was of a limited type and used limited antibiotics and no herbs, supplements or other body building, cell building therapies. So, my body was still run down, maybe even more so now.
Around 4 years ago the movie "Under Our Skin" came out. My husband and I went to see a pre-release screening presented in Rockland at the Strand. Well....I wasn't expecting what I saw. I saw me. I was in that movie all over. All the different doctors (I left that part out so far), all the different diagnosis (ditto), all the 'humoring', all the disbelief, all the fatigue, pain, brain fog, etc. etc., all there, all me. I found my self crying. Not bawling, but the kind of crying where one tear at a time flows. I realized I am not alone. It was the fist time in my life I understood what was really going on and why I was not being treated properly. It was the first time in his life that my husband realized all these vague symptoms were indeed Lyme and they were not going away.
This started me on the most intense research so far. I studied the disease, the politics, the vaccines, the places of research, doctors different therapies, doctors accepting patients, doctors published reports. I did it all. Good for me I kept it all in a file cabinet.
As a couple more years went by I began to function poorly again. I was worse than ever, and could hardly do anything without feeling drained (like walk up stairs, do laundry, simple things). I felt different somehow. To be honest, I felt like I was dying. Like little by little this disease was taking my life. It is a very hard feeling to describe, but it was like I knew I was losing the battle. I had lost almost 20 pounds from my usual weight and had no desire to eat. None. All those bacteria in my brain were effecting all areas of my body. I felt like I was being eaten up alive. The cell kill off was faster than the cell regeneration. At least healthy cell regeneration. That's what Lyme does. It KILLS cells. Hello....I hope patients and doctors understand that. Lyme kills cells.
I dug around and found another specialist who works out of Washington D.c., when I got in to see him I explained to him how I felt. Like I was dying. His reaction was one I wasn't expecting. He agreed. (Even now I am frustrated again at the misinformation out there about Lyme. People should know Lyme kills cells! It is a deadly disease when left to it's own devices.) Very briefly, I decided to go the IV treatment route. I had IV antibiotics for 8 months. I also went on a gluten free/sugar free diet, and began to take many supplements to build up my cells and grow healthy new cells.
At this time I am still working with this doctor, who understands the disease in a very intimate manner and he is helping me become healthy again. Time will tell.
I'm going to call that my story because I am tired of writing about it. I'll get to details as I go along. There are so many other topics I want to get to. So much to get from the file cabinet to the computer! I am on vacation next week, hiding in the mountains of Maine, with my bug spray, hiking hat, and walking stick. This year, I will be able to hike and kayak a whole lot more.
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