There should be no fight going on concerning Lyme. Doctors agree that:
1. it exist
2. It is a spreading epidemic and on the rise.
3. it is treated best with Doxycycline
The duration of treatment is all that is in debate
So what would make a sane man with a medical degree at like this...
I went to the infectious disease office here in Raleigh to see Dr Ingram. I had been told to skip the visit by a woman who has Lyme here in North Carolina. But she was really caught up in some sort of political controversy I knew nothing about at the time and all her opinions sounded a little wacky. Something about doctors lying for profit and what not and people being denied treatment. My experience with doctors is that they are fairly level headed. The will listen and consider all sides of the issue before prescribing anything. No - I was looking forward to my appointment at infectious disease. Even if Dr Ingram did not think I need more antibiotics I was looking forward to hearing about the latest studies on Lyme and the future research being done. I thought, "finally I will hear something level headed."
Nope.
I explained the horrible pain that can cripple me. How it easily rivals the pain of labor. How it can last weeks and have nearly cost me my job from missed work. He smiled at me and said, "You sound like you are ready to get you AARP Card." I took this for a geeky doctor attempting to make a joke but I was more than aware that he had just mocked me for my pain. I explained to him the seasonal bout of brain swelling that leaves me in my bed. He shrugged and said , "Don't worry it is the flu." Even though I get my flu shot I question. Sure he said " the flu shot doesn't cover everything." I would later find out from my neurologist that it was encephalopathy. But Infectious Disease didn't even try to look in to this symptom. He only glance at my blood work that was positive for Lyme. He said, there are lots of false test results with these things. I already knew the stats on the Western Blot - Famous for false negatives - but NOT false positives. Now I am wondering seriously about this man education concerning Lyme. I said the CDC website say that Lyme is one of the fastest growing diseases in the US. He responded "don't believe everything you read on the Internet. The CDC Website? He said the government does always tell the truth about these things. Ok now Dr Ingram was going vigilantly on me. He told me in detail that tick drag studies done by DENR showed no Lyme in NC. Well my husband works for DENR and participates in this research. I already knew that what he was say was exactly the opposite of what DENR is saying. I started to wonder, "how did he get through medical school with out the ability to read a study correctly? Next he noticed the name of my company and proceeded to make fun of my companies name - he called it arrogant sounding. He looked at my title - engineer. He said, "I guess you think you are pretty smart."
I told him the most troubling symptom I am having is tremors and loss of memory. That I was pretty sure my working career was coming to an end far faster than I wanted. He laughed and told me to "check into the old folks home". He explained to me that people he had see come into the office with giant swollen red knees not memory loss. I thought to myself - does he not know that 98% of blood cultured positive Lyme show no swelling of the joints and that last diagnosed Lyme was considered neuroborreliosis - a neurological condition sporting memory loss and tremors at the forefront. Wait a minute - I know more about Lyme then he does and I have only scratch the surface. I said nothing at this point and decided to get out of his doctors office as quickly as possible. But my escape was not so easy. He noted that my chart said, "High Functioning Autism". I was diagnosed with this when I was 9 - I am not 39. Needless to say in those years I have been retested numerous times by qualified psychiatrists. For some reason Dr. Ingram fancied himself smarter than all the psychiatrists at UNC Neuroscience and declared that I did not have autism but suffered from some sort of mental hysteria. I just sat there staring at him blankly thinking, this guy is nuts! Next he went on to assert - not once but twice that my husband could be poisoning me with arsenic. Now I was sure he had a loose screw. I tolerated about 10 more insane questions about Mad Cow disease and tularemia. Finally he said "there is not Lyme disease in NC." As if domestic travel have never been invented. I left as soon as I could.
He never told me anything about Lyme. He didn't bother to retest. He never bothered to test me for other tick born diseases.
Growing sicker each day I asked the neurologist to run some other tests. Later blood, CSF and urine studies for tick born disease would reveal I still had Lyme even after 6 weeks of doxycycline and that I also had, Babesia and Bartonella. Dr. Ingram at a bare minimum could of at least tested for the other tick disease just to see if maybe, maybe just maybe he was wrong. But nope his mind was closed like a steal trap.
6 months before in Jan of 2009 - before my appointment with Dr. Ingram at Infectious Disease in Raleigh - my GP said to me based purely on clinical observation - I think you have Lyme. He asked me about a bulls eye rash. I immediately remember having one 1994. I later found a photo of it from camping trip my husband and I had taken. I had labeled the photo "huge spider bite". My GP said, you probably need 6 month of antibiotic. But I can't give that to you. You will need to see a Lyme specialist out of state.
If my GP could have treated on clinical basis with 6 months of antibiotics. I could have saved my insurance company the cost of -
A. Elisa test
B. 2 Western Blots
C. 6 Neurology appointments
D. 1 MRI
E. 1 nerve conduction study test
F. 1 spinal tap
G. 16 different labs for other disease such as MS and Parkinson's
H. 1 a full Tick Panel study for all the common tick born disease.
The insurance would have paid for 3 GP visist, 2 labs and 6 months of oral doxycycline. 6 months of oral Azithromyacin and Mepron. Total - $500.00 if you buy the generics.
So enough of this ridiculous fighting over treatment length of Lyme. It is killing the doctors, patients and insurance companies. Just let GPs - not neurologist diagnosis it clinically without a huge panel of expensive tests and prescribe 6 to 12 months of oral antibiotics. Done deal. Lets take down our picket signs and all -GO HOME!
Wednesday, July 15, 2009
The first recorded deer tick virus fatality in New York state this May
Excerpt from SAM BUNGEY - Study: High Tick Disease Rates
Current Edition: Tuesday, July 14, 2009
http://www.mvgazette.com/article.php?21942
The first recorded deer tick virus fatality in New York state this May involved the death of a 62-year-old man from meningoencephalitis, apparently after being bitten by a deer tick infected with a strain of Lyme.
Ironically, it was Mr. Telford who discovered this particular strain of the virus 10 years ago, and cleared it as a rare strain of little consequence after extensive study with a team of researchers.
“It’s yet another reason to address tick prevention, though it’s not cause for panic,” he said.
Mr. Telford has been working on tick biology for 25 years. Mr. Telford’s research funding from Tufts University is for the study of tularemia on the Island.
The Vineyard produces one-tenth of all tularemia cases in America each year.
Even more remarkable, most of the recent tularemia cases are respiratory infections, a finding unique to the Vineyard within United States.
In 2001 an outbreak of the disease infected 14 and killed one in a single summer on the Island.
Tularemia is most often found in dog ticks. Mr. Telford’s team found the disease in five to 10 per cent of ticks tested. However, the transmittal of tularemia from that source is low on the Vineyard.
How the disease is spread remains a mystery. It is thought some cases were spread through contact with animal corpses disturbed by mowers during landscaping work. More than a third of the cases have been transmitted through means other than a dog tick.
“We’re trying to identify [what causes it], but we have landscapers who have had it and they know they haven’t run over a rabbit,” he said.
There are some 90 to 100 cases of tularemia a year in the United States, said Mr. Telford.
“The Vineyard has been famous for having dog ticks in its beach grass since the 1920s, so why on earth are we seeing tularemia now? We’ve been working on this seven to eight years, and we’re still scratching our heads about Martha’s Vineyard’s prolonged outbreak. And it’s not a prolonged outbreak any longer; it’s endemic . . . . The respiratory illness is not seen anywhere else. It’s just so bizarre,” he said.
The Vineyard and Nantucket are in the top 10 or top five areas of the country for the concentration of ticks and tick-borne illnesses. Mr. Telford points to the Vineyard’s glacial ecology and maritime habitat as being conducive to ticks.
Current Edition: Tuesday, July 14, 2009
http://www.mvgazette.com/article.php?21942
The first recorded deer tick virus fatality in New York state this May involved the death of a 62-year-old man from meningoencephalitis, apparently after being bitten by a deer tick infected with a strain of Lyme.
Ironically, it was Mr. Telford who discovered this particular strain of the virus 10 years ago, and cleared it as a rare strain of little consequence after extensive study with a team of researchers.
“It’s yet another reason to address tick prevention, though it’s not cause for panic,” he said.
Mr. Telford has been working on tick biology for 25 years. Mr. Telford’s research funding from Tufts University is for the study of tularemia on the Island.
The Vineyard produces one-tenth of all tularemia cases in America each year.
Even more remarkable, most of the recent tularemia cases are respiratory infections, a finding unique to the Vineyard within United States.
In 2001 an outbreak of the disease infected 14 and killed one in a single summer on the Island.
Tularemia is most often found in dog ticks. Mr. Telford’s team found the disease in five to 10 per cent of ticks tested. However, the transmittal of tularemia from that source is low on the Vineyard.
How the disease is spread remains a mystery. It is thought some cases were spread through contact with animal corpses disturbed by mowers during landscaping work. More than a third of the cases have been transmitted through means other than a dog tick.
“We’re trying to identify [what causes it], but we have landscapers who have had it and they know they haven’t run over a rabbit,” he said.
There are some 90 to 100 cases of tularemia a year in the United States, said Mr. Telford.
“The Vineyard has been famous for having dog ticks in its beach grass since the 1920s, so why on earth are we seeing tularemia now? We’ve been working on this seven to eight years, and we’re still scratching our heads about Martha’s Vineyard’s prolonged outbreak. And it’s not a prolonged outbreak any longer; it’s endemic . . . . The respiratory illness is not seen anywhere else. It’s just so bizarre,” he said.
The Vineyard and Nantucket are in the top 10 or top five areas of the country for the concentration of ticks and tick-borne illnesses. Mr. Telford points to the Vineyard’s glacial ecology and maritime habitat as being conducive to ticks.
Tuesday, July 14, 2009
The neurological symptoms that I would like to find relief from: Chronic Lyme
The neurological symptoms that I would like to find relief from are as follows. I would like my "let down response" to stop. Note I am not lactating I am just having the let down response. The opening to my urethra is spasmodic 24 -7. It is painful. I would like that to stop. I have insomnia due to an anxiety response that has nothing to do with me actually being anxious. I am really a happy - relaxed person. I get 3.5 hours of sleep a night and I am exhausted. I can no longer determine what pain or neurological problems are from infection or just plain lack of sleep.
Monday, July 13, 2009
Illness as a type of fasting
My minister at Vintage 21 in Raleigh made a good point:
"Anyone who fasts for 12 hours realizes they are not self sufficient. We require things out side of us to be sustained. That is humbling. After 12 hours no one approaches God with an arrogant heart."
I find illness and poverty to be similar to fasting. Different from regular fasting because it comes to us willing or not. But some of the best fasts in the bible happen to people who get lost in the desert. People who ended up hungry not of their own choice.
I find trying to treat a serious illness out of pocket in the face of an economic down turn humbling. Going with out money is a type of fasting as is going with out good health. I turn a humble heart to God. I ask that God make good on his promise that my suffering will show Jesus to the world. I find strength and meaning in the fact that I am not master of my own destiny and I need God to sustain me.
The difference between a deliberate fast of 12 hours and being sick is. When I wake up tomorrow - unless a miracle occurred in the middle of the night - I will still be sick. Now my fast becomes more like one who is wandering in the desert.
"Anyone who fasts for 12 hours realizes they are not self sufficient. We require things out side of us to be sustained. That is humbling. After 12 hours no one approaches God with an arrogant heart."
I find illness and poverty to be similar to fasting. Different from regular fasting because it comes to us willing or not. But some of the best fasts in the bible happen to people who get lost in the desert. People who ended up hungry not of their own choice.
I find trying to treat a serious illness out of pocket in the face of an economic down turn humbling. Going with out money is a type of fasting as is going with out good health. I turn a humble heart to God. I ask that God make good on his promise that my suffering will show Jesus to the world. I find strength and meaning in the fact that I am not master of my own destiny and I need God to sustain me.
The difference between a deliberate fast of 12 hours and being sick is. When I wake up tomorrow - unless a miracle occurred in the middle of the night - I will still be sick. Now my fast becomes more like one who is wandering in the desert.
Good Sense Approach to Chronic Lyme Treatment
This is only for Chronic Lyme treatment. ie; People who got diagnosed after initial infection. People who have failed the first 6 weeks protocol. 3 weeks of antibiotics does not cover one Lyme bacteria life cycle and should be avoided. The Lyme bacteria lifecycle is 28 days.
Take antibiotics for 3 life cycles or 12 weeks and see how you feel. You know if you are still sick or not. If you get to the end of 12 weeks and you are still a having a Herx reaction every 28 days then you still have Lyme and you need to continue until you don't have a 'die off' or Herx reaction. Simple - end of story. No drama here.
Screen for other tick born illnesses in your area such as Babesia or Bartonella. Ticks rarely carry just one disease. Babesia or Bartonella are not treated with Doxycycline. You can get rid of the Lyme and still be sick with other tick borne infections.
Now on to getting better. You must support your body and your immune system. See a rheumatologist who diagnoses Fibromyalgia and Chronic Fatigue regularly. Don't go on about Lyme and tick illnesses they are rhumetologists not infectious disease specialist. Even if they totally believe in long term abx therapy for Lyme they still aren't going to treat it because they are - rheumatologists. Chances are they think Lyme is weird and full of "quackery". So save your breath. You don't need there approval to get help for Lyme anyway. What you need them to help you with is "pain" and immune system building.
Take antibiotics for 3 life cycles or 12 weeks and see how you feel. You know if you are still sick or not. If you get to the end of 12 weeks and you are still a having a Herx reaction every 28 days then you still have Lyme and you need to continue until you don't have a 'die off' or Herx reaction. Simple - end of story. No drama here.
Screen for other tick born illnesses in your area such as Babesia or Bartonella. Ticks rarely carry just one disease. Babesia or Bartonella are not treated with Doxycycline. You can get rid of the Lyme and still be sick with other tick borne infections.
Now on to getting better. You must support your body and your immune system. See a rheumatologist who diagnoses Fibromyalgia and Chronic Fatigue regularly. Don't go on about Lyme and tick illnesses they are rhumetologists not infectious disease specialist. Even if they totally believe in long term abx therapy for Lyme they still aren't going to treat it because they are - rheumatologists. Chances are they think Lyme is weird and full of "quackery". So save your breath. You don't need there approval to get help for Lyme anyway. What you need them to help you with is "pain" and immune system building.
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