Aa
It seems to be everywhere-I wanted out of here!
This evening I pulled attached lone star tick off my dog with tweezer. As it got up on tweezer. It was scurrying toward me so fast! It wanted to go after me! Nevertheless I torched it. *sorry, tick but I cannot have you running around!*
A few weeks ago a engorged dog tick was swimming in the water. Don't they drown? Ugh.
This morning I was talking with my stock broker, I found out he was recently bitten by tick for umpth time. He doesn't see LLMD, and he saw a regular doctor for short term antibiotics or Rocepin IV.
My psychologist was also bitten by group of ticks on her arm in recent weeks. She doesn't bother to seek treatment this time-I asked her why, she shrugs. Never mind she has chronic lyme diseases in 90's, and was on Rocepin IV and oral antibiotics for two years.
Yes, Long Island (NY) is beautiful place, but I wanted to get hell out of here. It seems so infested around here and I am afraid to go outside or swimming nowaday. I am even afraid to let dog sits next to me or brush against me.
A few weeks ago a engorged dog tick was swimming in the water. Don't they drown? Ugh.
This morning I was talking with my stock broker, I found out he was recently bitten by tick for umpth time. He doesn't see LLMD, and he saw a regular doctor for short term antibiotics or Rocepin IV.
My psychologist was also bitten by group of ticks on her arm in recent weeks. She doesn't bother to seek treatment this time-I asked her why, she shrugs. Never mind she has chronic lyme diseases in 90's, and was on Rocepin IV and oral antibiotics for two years.
Yes, Long Island (NY) is beautiful place, but I wanted to get hell out of here. It seems so infested around here and I am afraid to go outside or swimming nowaday. I am even afraid to let dog sits next to me or brush against me.
Me, too! I am really hoping for world wide approval for long term treatment as well as better test interpretation on the Western Blot, so people can actually get treated!
Funny how medical professionals tell patients to stop going online when they quote something the professionals disagree with. As if everything on the internet was false and everything they "know" is true! There is lots of garbage out there, but that doesn't mean that print media is automatically more accurate!
One of the criticisms of the 4 week treatment is that the studies rarely follow up with patients more than 6 months later. One doctor argued that with a 5 year follow up, half of those patients got sick again. There are just too many stories of people going back and saying they're sick again, and doctors dismiss them saying it's not Lyme. It must be something else. In their minds, the 4 week treatment worked.
Funny how medical professionals tell patients to stop going online when they quote something the professionals disagree with. As if everything on the internet was false and everything they "know" is true! There is lots of garbage out there, but that doesn't mean that print media is automatically more accurate!
One of the criticisms of the 4 week treatment is that the studies rarely follow up with patients more than 6 months later. One doctor argued that with a 5 year follow up, half of those patients got sick again. There are just too many stories of people going back and saying they're sick again, and doctors dismiss them saying it's not Lyme. It must be something else. In their minds, the 4 week treatment worked.
You do bring up good points as to why some have lyme has it so bad, and others not so bad.
It amazes me even now when I had discussion with nurses, the ones who put in line, or give IV antibotics for lyme patients-they believe and swore by the fact one month of rocephin will make it go away even if lyme patient has disease for a long time. They have seen their patients improves that fast.
Then I point out to what i am reading online and see online, and even most recent article: http://shelterislandreporter.timesreview.com/2012/06/15843/suffolk-closeup-expected-to-be-a-brutal-tick-season/
Then they tell me to stop going online! Hey, it wasn't online, it was in paper-copy local newspaper.
As for that article--goody, I hope they passed the bill in NY this year, forcing health insurance to pay for long term treatment. I am hoping the same for all states nationwide, even in other countries.
It amazes me even now when I had discussion with nurses, the ones who put in line, or give IV antibotics for lyme patients-they believe and swore by the fact one month of rocephin will make it go away even if lyme patient has disease for a long time. They have seen their patients improves that fast.
Then I point out to what i am reading online and see online, and even most recent article: http://shelterislandreporter.timesreview.com/2012/06/15843/suffolk-closeup-expected-to-be-a-brutal-tick-season/
Then they tell me to stop going online! Hey, it wasn't online, it was in paper-copy local newspaper.
As for that article--goody, I hope they passed the bill in NY this year, forcing health insurance to pay for long term treatment. I am hoping the same for all states nationwide, even in other countries.
I read a summary of a LLMD's speech at a patient conference where she said the Lone Star ticks are so fast and aggressive they will actually chase after a potential meal. Yikes!
I had no idea there were lone star ticks as far North as Long Island. That means that many more people in the NE will go undiagnosed, as the orthodoxy of Lyme is that Lone Star ticks do not carry it.
I also read about a study that showed differing levels of severity of infection with different strains of Borrelia. They used highly inbred mice that are genetically very similar. Some strains did nothing more than cause a rash. Other strains caused crippling arthritis. This could explain how certain docs came to the conclusion that a short course of abx treats it. If they were looking at a group of patients from a small geographic area with a large percentage of a less severe strain, they could fall victim to believing their little microcosm represents the whole world. (Which they did, IMHO.)
It could also explain why some people you know with Lyme don't have it so bad. It is unfortunate that someone with Lyme who didn't get severe symptoms would assume another's experience would be the same as theirs. This isn't true for other dieases, like the flu, or TB. Why would anybody asume that about Lyme??
I had no idea there were lone star ticks as far North as Long Island. That means that many more people in the NE will go undiagnosed, as the orthodoxy of Lyme is that Lone Star ticks do not carry it.
I also read about a study that showed differing levels of severity of infection with different strains of Borrelia. They used highly inbred mice that are genetically very similar. Some strains did nothing more than cause a rash. Other strains caused crippling arthritis. This could explain how certain docs came to the conclusion that a short course of abx treats it. If they were looking at a group of patients from a small geographic area with a large percentage of a less severe strain, they could fall victim to believing their little microcosm represents the whole world. (Which they did, IMHO.)
It could also explain why some people you know with Lyme don't have it so bad. It is unfortunate that someone with Lyme who didn't get severe symptoms would assume another's experience would be the same as theirs. This isn't true for other dieases, like the flu, or TB. Why would anybody asume that about Lyme??
Yes, I do agree there are a lot of Lyme infected ticks in some areas of California. What Kaiser fails to acknowledge in that statistic is that they are quoting adult tick samples. In California, the primary vector is the nymph tick. In Mendocino county, up to 40% of nymph ticks are infected with Lyme. I haven't found any record of testing ticks for other diseases. The CA Dept of Health still won't confirm that Bartonella comes from a tick, yet. In my county, there is no record of testing nymph ticks, but adults come in at 1-3%. Not knowing the local nymph infection rate lulls docs into believing the 1% number.
BTW, I read some east coast Lyme denier came up with the statistic that less than 1% of tick bites result in Lyme. That is complete garbage. They have no studies whatsoever to back that up. It is just part of their propaganda that Lyme is rare. They are so fixated on how long the tick is attached, as if somehow a person knows when the tick started feeding and just left it there! One can only guess when a tick might have attached, and yet they quibble about # of hours or level of engorgement, as if we are all experts on tick engorgement.
That is amazing to read how many people in Sonoma county had been bit by ticks.
My only point on the likelihood of Lyme here is that even if we have 1000 times the reported cases in the state, we still have fewer cases than Massachusets, which has 6.5 million people as compared to our 38 million. I do believe there are plenty of people with Lyme here, but the percentage of the population who get Lyme is less here.
From now on, I will still be paranoid about ticks whether I have a 1% or a 40% chance of getting sick from one. Knowing how horrible the consequences can be, any risk is intolerable for me! I will always assume that any tick bite has introduced some kind of new infection.
BTW, I read some east coast Lyme denier came up with the statistic that less than 1% of tick bites result in Lyme. That is complete garbage. They have no studies whatsoever to back that up. It is just part of their propaganda that Lyme is rare. They are so fixated on how long the tick is attached, as if somehow a person knows when the tick started feeding and just left it there! One can only guess when a tick might have attached, and yet they quibble about # of hours or level of engorgement, as if we are all experts on tick engorgement.
That is amazing to read how many people in Sonoma county had been bit by ticks.
My only point on the likelihood of Lyme here is that even if we have 1000 times the reported cases in the state, we still have fewer cases than Massachusets, which has 6.5 million people as compared to our 38 million. I do believe there are plenty of people with Lyme here, but the percentage of the population who get Lyme is less here.
From now on, I will still be paranoid about ticks whether I have a 1% or a 40% chance of getting sick from one. Knowing how horrible the consequences can be, any risk is intolerable for me! I will always assume that any tick bite has introduced some kind of new infection.
Sorry, gotta disagree that Lyme "is not very common" in California. That's the CDC position.
See, contra: http://lyme.kaiserpapers.org/misbymile.html
That is a website that takes down Kaiser's 'mainstream' approach to diagnosing and treating Lyme. Part of it says:
=============================================
Kaiser states: “On the Pacific Coast, the western black-legged tick can carry the disease, but only 1% are infected. The percent of infected ticks is slightly higher (3-6%) in California’s northern coastal counties of Sonoma, Humboldt, Lake, and Mendocino. In fact the risk of getting Lyme disease is very low in California.”
The facts: Certain areas of California are highly endemic for Lyme and other tick-borne diseases. The vector tick is found in 55 of California's 58 counties. In Mendocino County, two hours north of San Francisco, the average tick infection rate is 15 percent (range 4 percent to 41 percent), and the outdoor lifestyle brings frequent exposure to ticks.[2] These tick infection rates are on par with the worst areas of the Northeastern United States where Lyme disease is epidemic. Bites by multiple ticks can increase the probability of infection.
A research study in the Ukiah area found 24 percent of the residents had positive Lyme tests and 37 percent had definite or probable Lyme disease.[3] Another research study using tick-saliva antibodies suggests that more than one-third of San Francisco Bay Area residents have been bitten by Ixodes pacificus, the tick that is known to carry Lyme disease.[3] These facts contradict the statement that “the risk of getting Lyme disease is very low in California.”
The Centers for Disease Control (CDC) classifies the West Coast, particularly northern California, and the Northeast and North-central states as the areas with the highest incidence of Lyme disease in the United States.[4]
Other tick-borne infections endemic to California and the Pacific Northwest are Babesia, Ehrlichia, Bartonella, and Tularemia. These can either present as coinfections of Lyme disease or as a sole infection. In some areas where studies have been done, coinfections have been shown to be more prevalent than infections with Lyme disease alone.
Lyme disease is the fastest growing reportable infectious disease in the United States based on an analysis of CDC reported cases that are based on a passive, not mandatory, reporting system. The CDC has acknowledged that reported statistics greatly understate the true incidence of the disease.[5] The actual number of new cases probably exceeds ten times reported cases, or about 200,000 new cases per year.[6]"
===============================================
The numbers in [square brackets] are to footnotes presented on the website, referencing medical studies, etc.
Don't drink the koolaid.
See, contra: http://lyme.kaiserpapers.org/misbymile.html
That is a website that takes down Kaiser's 'mainstream' approach to diagnosing and treating Lyme. Part of it says:
=============================================
Kaiser states: “On the Pacific Coast, the western black-legged tick can carry the disease, but only 1% are infected. The percent of infected ticks is slightly higher (3-6%) in California’s northern coastal counties of Sonoma, Humboldt, Lake, and Mendocino. In fact the risk of getting Lyme disease is very low in California.”
The facts: Certain areas of California are highly endemic for Lyme and other tick-borne diseases. The vector tick is found in 55 of California's 58 counties. In Mendocino County, two hours north of San Francisco, the average tick infection rate is 15 percent (range 4 percent to 41 percent), and the outdoor lifestyle brings frequent exposure to ticks.[2] These tick infection rates are on par with the worst areas of the Northeastern United States where Lyme disease is epidemic. Bites by multiple ticks can increase the probability of infection.
A research study in the Ukiah area found 24 percent of the residents had positive Lyme tests and 37 percent had definite or probable Lyme disease.[3] Another research study using tick-saliva antibodies suggests that more than one-third of San Francisco Bay Area residents have been bitten by Ixodes pacificus, the tick that is known to carry Lyme disease.[3] These facts contradict the statement that “the risk of getting Lyme disease is very low in California.”
The Centers for Disease Control (CDC) classifies the West Coast, particularly northern California, and the Northeast and North-central states as the areas with the highest incidence of Lyme disease in the United States.[4]
Other tick-borne infections endemic to California and the Pacific Northwest are Babesia, Ehrlichia, Bartonella, and Tularemia. These can either present as coinfections of Lyme disease or as a sole infection. In some areas where studies have been done, coinfections have been shown to be more prevalent than infections with Lyme disease alone.
Lyme disease is the fastest growing reportable infectious disease in the United States based on an analysis of CDC reported cases that are based on a passive, not mandatory, reporting system. The CDC has acknowledged that reported statistics greatly understate the true incidence of the disease.[5] The actual number of new cases probably exceeds ten times reported cases, or about 200,000 new cases per year.[6]"
===============================================
The numbers in [square brackets] are to footnotes presented on the website, referencing medical studies, etc.
Don't drink the koolaid.
It is true that we so much more of something when we are hyper aware of it. But it is also true that there are more ticks and Lyme in some places than others. Long Island is really high up on the list. I didn't think I knew anyone with Lyme until I started talking about it and almost immediately came across 1/2 a dozen people with it. It is here in CA, although not very common. My husband's doctor said he had only seen 1 patient with it (that he knew of). Some of my other docs had never seen a case (that they knew of).
I had a golden retriever for 13 years and in her whole life I think she had one engorged tick and one crawling on her that I squished. And she loved running throuh tall grass. She never got Lyme.
I do think your psychologist is being inappropriate in expecting you to be able to push through your fatigue. I think pushing myself too far makes me worse. I would rather pace myself and be more stable, then push myself, crash, and spend the next two days recovering.
But I also have the impression that most people with late stage Lyme get better in 1-2 years of treatment. That is consistent with my doc's practice. But there is a small percentage who have had it for a long time, usually patients with coinfections and a history of steroids, that just can't seem to be cured. My doc gets mostly late stage patients, and he says 10-15% are treatment resistant. Those people either stay on ongoing antibiotics or switch to natural/Chinese supplements to keep it down to a minimum.
I remember a sense of urgency and intensity that my mother and husband referred to as "obsessive." I disagreed at the time, but in hindsight, I realize I was. I am so much calmer now than a few months ago. Just take it one step at a time, and don't let the anxiety get the best of you.
I had a golden retriever for 13 years and in her whole life I think she had one engorged tick and one crawling on her that I squished. And she loved running throuh tall grass. She never got Lyme.
I do think your psychologist is being inappropriate in expecting you to be able to push through your fatigue. I think pushing myself too far makes me worse. I would rather pace myself and be more stable, then push myself, crash, and spend the next two days recovering.
But I also have the impression that most people with late stage Lyme get better in 1-2 years of treatment. That is consistent with my doc's practice. But there is a small percentage who have had it for a long time, usually patients with coinfections and a history of steroids, that just can't seem to be cured. My doc gets mostly late stage patients, and he says 10-15% are treatment resistant. Those people either stay on ongoing antibiotics or switch to natural/Chinese supplements to keep it down to a minimum.
I remember a sense of urgency and intensity that my mother and husband referred to as "obsessive." I disagreed at the time, but in hindsight, I realize I was. I am so much calmer now than a few months ago. Just take it one step at a time, and don't let the anxiety get the best of you.
Your psychologist has, in my untrained opinion, a bad case of 'projection.' Projecting her situation onto you. Some psychologist, huh. I'm sure she's trying to be reassuring, but ... no.
Lyme affects (afflicts!) everyone differently, I think due partly to which co-infections are mixed in with the Lyme, and also due to our own personal body chemistry. Lyme is insidious and complex, and when science and medicine finally get themselves sorted out, we will have achieved a new level of understanding about this branch of science.
Take care! It will get better.
Lyme affects (afflicts!) everyone differently, I think due partly to which co-infections are mixed in with the Lyme, and also due to our own personal body chemistry. Lyme is insidious and complex, and when science and medicine finally get themselves sorted out, we will have achieved a new level of understanding about this branch of science.
Take care! It will get better.
It has nothing to do with the determination. I know I do have the determination but my body does not cooperate.
Often I feel like a bird with wings clipped. For better analogy, my mind is in 90-mph lane, and my body is in 15-mph lane.
OH BOY DO I KNOW HOW THAT FEELS!!!!
PERFECT ANALOGIES!!!!
Often I feel like a bird with wings clipped. For better analogy, my mind is in 90-mph lane, and my body is in 15-mph lane.
OH BOY DO I KNOW HOW THAT FEELS!!!!
PERFECT ANALOGIES!!!!
Yes, that's true.
=>we are afflicted with something bad, sometimes that's all we see and hear around us.
=>"all of these things were happening around me all along, it is just that when it happened to someone I loved, I was suddenly PRIMED to notice all of the details and stories around me that before would have seemed "rare" and "distant."
The question is the lyme stories/posts I see online, in this forum, and in other forums-are they small percentage, the "worst of lyme diseases patients" who couldn't do too much with their life(working, and such) and have the time to type the posts in forum? My psychologist say this, and insists that majority of lyme diseases patient recovers fast, and in 1-2 years.
She say she works while having chronic lyme diseases, because she push herself, and thinks I could do the same. I told her I tried to be more active, within a few hours, I crashed badly with exhaustion, even if it is fun activity.
I pointed out to her, maybe you do have more energy than I do, in better health-wise shape than I am? How do you measure energy level from lyme disease patient to another?
It has nothing to do with the determination. I know I do have the determination but my body does not cooperate.
Often I feel like a bird with wings clipped. For better analogy, my mind is in 90-mph lane, and my body is in 15-mph lane.
=>we are afflicted with something bad, sometimes that's all we see and hear around us.
=>"all of these things were happening around me all along, it is just that when it happened to someone I loved, I was suddenly PRIMED to notice all of the details and stories around me that before would have seemed "rare" and "distant."
The question is the lyme stories/posts I see online, in this forum, and in other forums-are they small percentage, the "worst of lyme diseases patients" who couldn't do too much with their life(working, and such) and have the time to type the posts in forum? My psychologist say this, and insists that majority of lyme diseases patient recovers fast, and in 1-2 years.
She say she works while having chronic lyme diseases, because she push herself, and thinks I could do the same. I told her I tried to be more active, within a few hours, I crashed badly with exhaustion, even if it is fun activity.
I pointed out to her, maybe you do have more energy than I do, in better health-wise shape than I am? How do you measure energy level from lyme disease patient to another?
It has nothing to do with the determination. I know I do have the determination but my body does not cooperate.
Often I feel like a bird with wings clipped. For better analogy, my mind is in 90-mph lane, and my body is in 15-mph lane.
Yeah--now you are in Florida, with the alligators and fire ants and occasional killer bee attacks. From wence you could move to Calif and have the earthquakes and so go to Kansas and have the tornados.
Life is full of risks--and I totally get it with the ticks. I have never worried about walking barefoot in my yard or playing paintball in the woods, now I totally do.
BUT--at the same time--I was also careless before--no DEET, no long socks, no tick checks. I put tick repellent on my dogs, but not religiously, and I rarely worried about repellent on the horses--DUH, which we ride IN THE WOODS!! I kind've think that I lived life on the Eastern Shore of MD like a person who can't swim would live life on a small boat without a life preserver on board. I knew better, didn't think it would be a big deal (because all I knew about Lyme was that you would get a rash, take some ABX and move on with life) so didn't take the precautions that I now know could have saved me this whole year of misery, and possibly the months and years ahead of continued fighting.
THere are steps to be taken to protect ourselves from the ticks that threaten our health--there are grass sprays, tick repellents and more. And, yes, we can move, if that is our choice.
I also know, though, that when we are afflicted with something bad, sometimes that's all we see and hear around us. I had a good friend who had a brain tumor diagnosed four years ago. Suddenly, it seemed like there was a surge of brain tumors around me--everyone seemed to either HAVE a tumor or know someone who was just diagnosed or died from one. My God, I thought, what's with this sudden surge? Then I realized, all of these things were happening around me all along, it is just that when it happened to someone I loved, I was suddenly PRIMED to notice all of the details and stories around me that before would have seemed "rare" and "distant."
I had heard many stories of people with Lyme before my saga began. It seemed sporadic to me then--now it seems pandemic. Yet, I don't necessarily think the field has changed, just my perspective.
None of this matters--just a thought post from a Friday morning Lymie...
HOpe all have a relatively "good" day.
Yours,
Life is full of risks--and I totally get it with the ticks. I have never worried about walking barefoot in my yard or playing paintball in the woods, now I totally do.
BUT--at the same time--I was also careless before--no DEET, no long socks, no tick checks. I put tick repellent on my dogs, but not religiously, and I rarely worried about repellent on the horses--DUH, which we ride IN THE WOODS!! I kind've think that I lived life on the Eastern Shore of MD like a person who can't swim would live life on a small boat without a life preserver on board. I knew better, didn't think it would be a big deal (because all I knew about Lyme was that you would get a rash, take some ABX and move on with life) so didn't take the precautions that I now know could have saved me this whole year of misery, and possibly the months and years ahead of continued fighting.
THere are steps to be taken to protect ourselves from the ticks that threaten our health--there are grass sprays, tick repellents and more. And, yes, we can move, if that is our choice.
I also know, though, that when we are afflicted with something bad, sometimes that's all we see and hear around us. I had a good friend who had a brain tumor diagnosed four years ago. Suddenly, it seemed like there was a surge of brain tumors around me--everyone seemed to either HAVE a tumor or know someone who was just diagnosed or died from one. My God, I thought, what's with this sudden surge? Then I realized, all of these things were happening around me all along, it is just that when it happened to someone I loved, I was suddenly PRIMED to notice all of the details and stories around me that before would have seemed "rare" and "distant."
I had heard many stories of people with Lyme before my saga began. It seemed sporadic to me then--now it seems pandemic. Yet, I don't necessarily think the field has changed, just my perspective.
None of this matters--just a thought post from a Friday morning Lymie...
HOpe all have a relatively "good" day.
Yours,
I am from the DC/VA area. Our home had woods and deer behind it and that is how I got it. I dated someone who worked outside and he and his colleagues were bit all the time. Usuall if you catch it like that a couple weeks of doxy cures it. This guy didn't believe in chronic Lyme, that is why we stopped dating. I am now in FL and feel much safe. I know how you feel.
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