OT: Lyme disease warning.

[Limestone_Lion]

I got Lyme 2 or 3 years ago. Woke up one morning and could not bend anything (neck, knees, back, hips, etc). I was 26-27 at the time. My girlfriend at the time (now wife) noticed the halo on my side, went to urgent care and got antibiotics, within 2 days I developed bell's palsy, where half my face droops and is paralyzed. I got my range of motion back in roughly 3 days, but the bells palsy lasted about 3 weeks.

I am fine now as I caught it early enough. A landlord I had when I was in my 3rd year at PSU dealt with his wife who had it. It ended up causing her to die very young (55 or so) due to complications of a non diagnosis.

If your unsure, go to a doctor period. Lyme isn't a joke. My little brother had it as well before he passed (not related to lyme). They told him he didn't have it 3 times before the halo showed up. All spinal tap testing can be negative even if you have it.

 

[jim cummings]

ticks, spiders, deer shit, dog shit, turkey shit, goose shit, and poison ivy are my nemesis'.

 

[PSU.:.]

Lyme disease is no joke. My brother had for few years and it's made him sucidal from nerological issues. He always feels sick and just plain lousy all the time. Pretty horrible stuff

 

[bwifan]

I had aches, chills, pain, a leg that wouldn't stop shaking, 103 plus degree fever, all of it. And when it comes on you also can't sleep. Horrible. I have a friend who thought she was losing her mind and those around her thought the same.

My point is the symptoms are very broad and not the same from person to person.

You are correct most nights my daughter cannot get to sleep until 2-3am... Especially when she has a flare up of Lyme. A side effect of Lyme is also parasites. Which are active at night. So we have to have her do a cleanse for a couple of weeks to get rid of the parasites then her body can settle back down and get some sleep. What is so astounding is all the different forms it takes in people's body's. Some get the shakes, others flu like symptoms, others get really bad muscle twitching, others really bad head and body aches. Others get really bad rashes. God awful disease.

* Thank You everyone for your thoughts and prayers. I truly mean this when I would not wish this on any enemy. Hearing my younger kids say I would give up everything just to have my sister healthy again warms and breaks my heart at the same time. Just hearing words of kindness and support rather than it's all in your kid's head mean so much to people fighting this disease. Hopefully we can make some strides in the coming years.

 

[bwifan]

Lyme disease is no joke. My brother had for few years and it's made him sucidal from nerological issues. He always feels sick and just plain lousy all the time. Pretty horrible stuff

There are numerous people who have taken their own lives due to the neurological issues. People truly feel they are going crazy. Plus the financial burden it puts on people is a heavy load and for some becomes to heavy to carry and decide to end it. The one's that do have left letters saying they just didn't want to live like this for the rest of their lives. It's a sad and heart wrenching disease and many need emotional support and would really help if insurance companies covered some of the costs as well.

 

[Cosmos]

With the milder winter, my wife was doing some yard work last week. Sunday we found a deer tick (which can transmit Lyme disease) attached to the back of her leg. Our yard, in suburban Pittsburgh, is not heavily wooded, and she was not working in dense vegetation. She went to the doctor today and they said they have had several cases this week alone. I've spent considerable time reading about Lyme and, if not treated, it can cause you a lot of grief. This year, the tick population in the Northeast is predicted to be off the charts. The best defense is avoidance. If you frequent tick areas, check yourself, your family, and your pets, every time you are in harms way. We routinely do that and still missed one. This is serious stuff. Be careful.

Here's the thing (and there's no way of getting around it). When I was a kid growing up in NW PA we were in the weeds all the time. Played in the woods constantly. Never did we get deer ticks. So what's changed between then and now.

 

[T J]

Here's the thing (and there's no way of getting around it). When I was a kid growing up in NW PA we were in the weeds all the time. Played in the woods constantly. Never did we get deer ticks. So what's changed between then and now.

In the past, people who got bit had minor issues and therefore it wasn't as serious and it wasn't tracked.

There are still many areas like that, where the disease has not yet spread.

However, in areas where the disease has taken hold, every bite is now important. Every bite has the potential to inflict the disease.

Consequences for the infections can be severe, as the touching and heartbreaking posts in this thread have clearly documented.

So the change is that the disease moved in, that most likely didn't exist in earlier days. It is a serious situation, that needs careful attention.

God Bless all who are struggling with the severe consequences of this debilitating disease.

 

[The Spin Meister]

You are correct most nights my daughter cannot get to sleep until 2-3am... Especially when she has a flare up of Lyme. A side effect of Lyme is also parasites. Which are active at night. So we have to have her do a cleanse for a couple of weeks to get rid of the parasites then her body can settle back down and get some sleep. What is so astounding is all the different forms it takes in people's body's. Some get the shakes, others flu like symptoms, others get really bad muscle twitching, others really bad head and body aches. Others get really bad rashes. God awful disease.

* Thank You everyone for your thoughts and prayers. I truly mean this when I would not wish this on any enemy. Hearing my younger kids say I would give up everything just to have my sister healthy again warms and breaks my heart at the same time. Just hearing words of kindness and support rather than it's all in your kid's head mean so much to people fighting this disease. Hopefully we can make some strides in the coming years.

----

I saw a PBS show a couple of years ago about Lyme disease. It was done with a low budget camera and crew, not high quality. But it had some amazing info. They showed people that had long term issues and were given little hope. They talked to two doctors that said that lyme must be treated with long term antibiotics, one in Boston and one in Seattle. They treat people with antibiotics for a minimum of six months or even a year, not the 30 days of standard treatment.

Such long term use of antibiotics has its own risks. It destroys the guts natural bacterial growth and leads to all sorts of problem so few doctors would recommend it.

They discussed the possible links to MS, fibromyalgia, dementia and alzheimer's. It had been studied by the CDC but they determined the evidence was inconclusive.

Interviewed one young women, a former athlete and outdoors backpacker, that had been so damaged that you would think she cerebral palsy. Paralyses, terrible speech, and more. Had been il for years. After a year of antibiotics, she had recovered almost fully, just a little slurred speech.

Sorry I don't know the name of the documentary or the names of the doctors. It was a low budget film that showed on Akron PBS channel 45.

 

[fairgambit]

Here's the thing (and there's no way of getting around it). When I was a kid growing up in NW PA we were in the weeds all the time. Played in the woods constantly. Never did we get deer ticks. So what's changed between then and now.

Deer populations have exploded in the past few decades and with them deer ticks. I've been in my present home for 40 years. Even 20 years ago we never saw deer in our yard, or anywhere close. Now we see them 2 or 3 times a week. Mice are hosts for ticks in the 1st year of their 2 year life cycle, but deer transport the ticks and give adult ticks their last blood meal. Studies have shown when you reduce the deer population to about 10 per square mile, you dramatically reduce the tick population.

 

[fairgambit]

There are numerous people who have taken their own lives due to the neurological issues. People truly feel they are going crazy. Plus the financial burden it puts on people is a heavy load and for some becomes to heavy to carry and decide to end it. The one's that do have left letters saying they just didn't want to live like this for the rest of their lives. It's a sad and heart wrenching disease and many need emotional support and would really help if insurance companies covered some of the costs as well.

I want to again thank you for sharing your own story and the pain it has caused your daughter and family. I have no doubt your posts have caused others to take Lyme more seriously and perhaps their new awareness will help them avoid the misery your daughter is going through.

 

[T J]

----

I saw a PBS show a couple of years ago about Lyme disease. It was done with a low budget camera and crew, not high quality. But it had some amazing info. They showed people that had long term issues and were given little hope. They talked to two doctors that said that lyme must be treated with long term antibiotics, one in Boston and one in Seattle. They treat people with antibiotics for a minimum of six months or even a year, not the 30 days of standard treatment.

Such long term use of antibiotics has its own risks. It destroys the guts natural bacterial growth and leads to all sorts of problem so few doctors would recommend it.

They discussed the possible links to MS, fibromyalgia, dementia and alzheimer's. It had been studied by the CDC but they determined the evidence was inconclusive.

Interviewed one young women, a former athlete and outdoors backpacker, that had been so damaged that you would think she cerebral palsy. Paralyses, terrible speech, and more. Had been il for years. After a year of antibiotics, she had recovered almost fully, just a little slurred speech.

Sorry I don't know the name of the documentary or the names of the doctors. It was a low budget film that showed on Akron PBS channel 45.

A couple possible options below.

Have not looked at either, so others may want to comment on the contents and the potential value of either series... or lack of value for this topic.

 

[Little J]

great question Cosmos what is different today? 30-40 years ago you might find a raisin size dog tick (species) every now and then, but never these little deer ticks.

I saw it mentioned earlier, but to repeat, dogs get Lyme too and like people it effects some more severely. Recommend a tick killer chewable like NexGuard or similar. My lab loves the field and before I bring him in I brush him out for ticks with a flea comb. I seldom find less than half a dozen on him and sometimes there are 20 or more. If you do not do this you get them in the house and on you. Deer ticks do not live long in the house, dying of dehydration within 24 hours, so that is a plus.

On the kill ticks on contact side you can use permethrin spray to take out the ticks which are on your clothes or gear. It is not for the skin of you or your dog so be careful. It also sticks around on fabric for some time. It is an exposure/benefit balance.

For your skin you can use a repellent like DEET - but DEET is a nasty chemical that dissolves plastic (like watch faces and glasses frames) and has that oily feeling. It also has some history of neurological issues on those exposed to it. A far better alternative are products that contain picaridin. First picaridin is a better tick repellent in terms of how long it is active. Second chemically it is a derivative of black pepper and does not carry the oily feel or the tox issues of a DEET. Sawyer has a picaridin product (spray and cream) as does Avon (skin so soft). Any of the "brands" will do so long as they say picaridin on the label - you have to check. As an added bonus, it matches DEET in mosquito repellency.

 

[bwifan]

----

I saw a PBS show a couple of years ago about Lyme disease. It was done with a low budget camera and crew, not high quality. But it had some amazing info. They showed people that had long term issues and were given little hope. They talked to two doctors that said that lyme must be treated with long term antibiotics, one in Boston and one in Seattle. They treat people with antibiotics for a minimum of six months or even a year, not the 30 days of standard treatment.

Such long term use of antibiotics has its own risks. It destroys the guts natural bacterial growth and leads to all sorts of problem so few doctors would recommend it.

They discussed the possible links to MS, fibromyalgia, dementia and alzheimer's. It had been studied by the CDC but they determined the evidence was inconclusive.

Interviewed one young women, a former athlete and outdoors backpacker, that had been so damaged that you would think she cerebral palsy. Paralyses, terrible speech, and more. Had been il for years. After a year of antibiotics, she had recovered almost fully, just a little slurred speech.

Sorry I don't know the name of the documentary or the names of the doctors. It was a low budget film that showed on Akron PBS channel 45.

Thank You for this... and yes it's a big risk taking antibiotics for that long. Lots of weighing of risk/reward.

 

[Psychedelic_MackDaddy]

With the milder winter, my wife was doing some yard work last week. Sunday we found a deer tick (which can transmit Lyme disease) attached to the back of her leg. Our yard, in suburban Pittsburgh, is not heavily wooded, and she was not working in dense vegetation. She went to the doctor today and they said they have had several cases this week alone. I've spent considerable time reading about Lyme and, if not treated, it can cause you a lot of grief. This year, the tick population in the Northeast is predicted to be off the charts. The best defense is avoidance. If you frequent tick areas, check yourself, your family, and your pets, every time you are in harms way. We routinely do that and still missed one. This is serious stuff. Be careful.

Just evolution, my friend. The warmer winters will fuel mutations among ticks and mosquitoes. Think, MRSA, ORSA, VRE etc.... leading to the extinction of the human race.

Thank the oil companies.

 

[JBDLion]

The comments of Lyme disease and insurance coverage reminds me of my family's story when I was younger. My older sister had a severe eating disorder at a young age. It took a few weeks at Children's Hospital to stabilize her and identify the true issue. Once it was determined to be an eating disorder, insurance backed off completely. That incident and the years of ensuing therapy almost ruined my dad financially. I knew we were struggling at the time but had no idea why and the full extent until recently. Insurance coverage for mental health has changed dramatically in the years since. Hopefully the same will be said for Lyme in the near future.

 

[bwifan]

I want to again thank you for sharing your own story and the pain it has caused your daughter and family. I have no doubt your posts have caused others to take Lyme more seriously and perhaps their new awareness will help them avoid the misery your daughter is going through.

Thank You Fair... It's going to be a lifelong road most likely. But we have not given up hope and continue to push for research as well as get the CDC to move. It's a scary disease. I thought there would be many more ticks in Florida but talking to a friend of mine who is a biologist he was telling me how it's actually too hot for them in FL. There are ticks but not near the amount from the Carolina's up through Maine. They actually like cool and moist weather. Upper 40s and low 50s with moisture is what they really like temp wise. It's why they are so prominent in those area's. Eastern PA is turning into a hot bed for Lyme. Perfect climate with tons of wildlife for deer ticks. I am afraid this is only going to get worse for many family's over time. Eventually the numbers will be just so overwhelming the research and pressure will become to great that the CDC will be forced to move and pharmaceutical company's and other's will put much more money into research.

 

[The Spin Meister]

A couple possible options below.

Have not looked at either, so others may want to comment on the contents and the potential value of either series... or lack of value for this topic.

View embedded media

View embedded media

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It was Under Our Skin but I must have seen a version edited for television. Some amazing stuff, like the Dr that found lyme DNA in 7 of 10 brains from people that died of Alzheimers. Nice find, thanks.

Other people claim these treatments did no good so there is much to learn yet. It may be that lyme is actually many diseases as is cancer. It may be that variants of the lyme spirochete are immune to different antibiotics. It may be that there are different causes to these diseases and lyme is but one of them. .

What is maddening is that there seems to be little urgency to find out the truth. Seems that there should be major research going on. If lyme is the cause of a substantial number of these cases, treating and curing it could greatly reduce the cost of elderly patients and many middle age people.

bwifan; I do not want to give you false hope. I have no idea if this would help your child. Only you can decide to pursue these options. I do hope the best for you and your family and anyone that has this terrible disease.

PS there was a lyme vaccine on the market for a number of years but I believe it was withdrawn from the market. If they have one that is reliable, I would certainly take it as I spend a lot of time outdoors and in the woods.

 

[MAJoePa]

Even when taking precautions, my wife has had it twice, completely miserable for her. The good news on the second bout was they caught it very early and got her on doxycycline right away.

 

[T J]

-----------------------
It was Under Our Skin but I must have seen a version edited for television. Some amazing stuff, like the Dr that found lyme DNA in 7 of 10 brains from people that died of Alzheimers. Nice find, thanks.

Other people claim these treatments did no good so there is much to learn yet. It may be that lyme is actually many diseases as is cancer. It may be that variants of the lyme spirochete are immune to different antibiotics. It may be that there are different causes to these diseases and lyme is but one of them. .

What is maddening is that there seems to be little urgency to find out the truth. Seems that there should be major research going on. If lyme is the cause of a substantial number of these cases, treating and curing it could greatly reduce the cost of elderly patients and many middle age people.

bwifan; I do not want to give you false hope. I have no idea if this would help your child. Only you can decide to pursue these options. I do hope the best for you and your family and anyone that has this terrible disease.

PS there was a lyme vaccine on the market for a number of years but I believe it was withdrawn from the market. If they have one that is reliable, I would certainly take it as I spend a lot of time outdoors and in the woods.

You are very welcome The Spin Meister.
Hope the info helps some folks.

Thanks to you and every other poster for sharing your stories, suggestions and recommendations for future actions.

 

[83wuzme]

I am not sure how much of a difference a mild winter makes. We had two very cold winters in ' 13 - '14, '14 - '15 and they did nothing to slow down the ticks in my area.
I have had some success with burning areas around my yard. I live up against the woods and can do this, but to do a real decent burn, I would need a fire crew.
The CDC has a recommendation page for home landscaping to reduce risk.

 

[fairgambit]

I am not sure how much of a difference a mild winter makes. We had two very cold winters in ' 13 - '14, '14 - '15 and they did nothing to slow down the ticks in my area.
I have had some success with burning areas around my yard. I live up against the woods and can do this, but to do a real decent burn, I would need a fire crew.
The CDC has a recommendation page for home landscaping to reduce risk.

From what I've read, ticks are very sturdy pests. They survive winters well and will come out even in the dead of winter if there is a warmer day, say above 40 degrees. Some people think if they take a bath any ticks on them will drown, but they can survive under water for 2 or 3 days.

 

[wslee1]

Ticks definitely out in force this year. Already found on my dog couple weeks ago. I live in area where ticks are always a problem. Got him tested for Lyme disease several years ago, and back then, they did find small trace. Immediately got him vaccinated and now gets Lyme booster shoots annually.

 

[jrd23psu]

My BIL and best friend both have had Lyme's disease since 2015. My GFs best friend has it now. It sucks. I've pulled three ticks off my dog in the past few months. We stopped taking her to a park we frequented after finding two on her after a trip there in the fall and she still ended up with another one somehow just last month.

I pulled one from my chest/stomach a few years ago after finding it while I was taking a shower. I had gone hiking a couple of days earlier. I went to the doctor and everything was fine but I still took antibiotics just in case.

It sucks.

 

[fairgambit]

I am not sure how much of a difference a mild winter makes. We had two very cold winters in ' 13 - '14, '14 - '15 and they did nothing to slow down the ticks in my area.
I have had some success with burning areas around my yard. I live up against the woods and can do this, but to do a real decent burn, I would need a fire crew.
The CDC has a recommendation page for home landscaping to reduce risk.

The burning is a good point. It certainly destroys ticks, but I've read that there are much fewer controlled burns today than decades ago. Also, ticks love leaf litter and in the past people would burn their leaves, killing ticks in the process. Today, at least in Allegheny County PA, you generally can't do that without a burning permit.

 

[83wuzme]

I have also read stuff suggesting how post Columbian human changes to our ecosystems have probably made the tick population bigger. More forests and more deer boosted tick populations. The Indians used to burn large swaths of forest, and that probably helped keep tick populations down. Invasive plants like Japanese Barberry and multiflora rose can help ticks access hosts.
Ticks carry a number of bacterial and viral pathogens, " Lyme " being just one of them. I think there is also some debate about whether Lyme is actually endemic to N America or if it was introduced.

 

[bwifan]

-----------------------
It was Under Our Skin but I must have seen a version edited for television. Some amazing stuff, like the Dr that found lyme DNA in 7 of 10 brains from people that died of Alzheimers. Nice find, thanks.

Other people claim these treatments did no good so there is much to learn yet. It may be that lyme is actually many diseases as is cancer. It may be that variants of the lyme spirochete are immune to different antibiotics. It may be that there are different causes to these diseases and lyme is but one of them. .

What is maddening is that there seems to be little urgency to find out the truth. Seems that there should be major research going on. If lyme is the cause of a substantial number of these cases, treating and curing it could greatly reduce the cost of elderly patients and many middle age people.

bwifan; I do not want to give you false hope. I have no idea if this would help your child. Only you can decide to pursue these options. I do hope the best for you and your family and anyone that has this terrible disease.

PS there was a lyme vaccine on the market for a number of years but I believe it was withdrawn from the market. If they have one that is reliable, I would certainly take it as I spend a lot of time outdoors and in the woods.

Yes the vaccine was pulled due to a number of factors. The problem for my daughter is many vaccine's use heavy metals to bind them and part of my daughters memory loss was due to heavy metal poisoning. Why she does a cleanse regularly. It's 1 of the few things that clears the fog and memory loss she encounters. Doctors estimate that her kidney's were working at less than 20% efficiency when she was diagnosed finally. Her body has a very hard time flushing out metals (found in pesticides etc) why we have gone to all organic/non gmo diets and no lawn treatments and rodent/pest control etc... The cost of eating this way is a huge increase in expense.
The problem also is in that Lyme is misdiagnosed so often and written off as other things. The actual real numbers of people estimated to be living with Lyme and how many more will get it in the future is staggering to say the least. So until the CDC changes it's mind it's a very large problem on their hands that is going to huge in numbers in the coming years most likely. Pharmaceuticals won't due anything until the CDC changes it's stance or there is enough $$$$$ to justify putting money into the research and ROI. For so many it's like a dog chasing it's tail. They all point at each other when confronted. What is really hard is everyone almost has to customize their recovery to what work's best for their body. It's a lot of trial and error. There is no 1 way that works for the majority. Herxing is a big problem and side effect. There are plenty of online places to go to understand how hard it is for people and what things like Herxing is for Lyme patients. Herxing is god awful to watch someone go through. LLMD's are good at customizing treatments but you have to find 1 willing to work with patients and you most likely are going to have to travel long distances to see them.

 

[Phil's Rug]

From what I've read, ticks are very sturdy pests. They survive winters well and will come out even in the dead of winter if there is a warmer day, say above 40 degrees. Some people think if they take a bath any ticks on them will drown, but they can survive under water for 2 or 3 days.

Yeah, they are tuff little sob's. Some time in the freezer in a ziplock bag or air tight container fixes that.

 

[fairgambit]

Yes the vaccine was pulled due to a number of factors. The problem for my daughter is many vaccine's use heavy metals to bind them and part of my daughters memory loss was due to heavy metal poisoning. Why she does a cleanse regularly. It's 1 of the few things that clears the fog and memory loss she encounters. Doctors estimate that her kidney's were working at less than 20% efficiency when she was diagnosed finally. Her body has a very hard time flushing out metals (found in pesticides etc) why we have gone to all organic/non gmo diets and no lawn treatments and rodent/pest control etc... The cost of eating this way is a huge increase in expense.
The problem also is in that Lyme is misdiagnosed so often and written off as other things. The actual real numbers of people estimated to be living with Lyme and how many more will get it in the future is staggering to say the least. So until the CDC changes it's mind it's a very large problem on their hands that is going to huge in numbers in the coming years most likely. Pharmaceuticals won't due anything until the CDC changes it's stance or there is enough $$$$$ to justify putting money into the research and ROI. For so many it's like a dog chasing it's tail. They all point at each other when confronted. What is really hard is everyone almost has to customize their recovery to what work's best for their body. It's a lot of trial and error. There is no 1 way that works for the majority. Herxing is a big problem and side effect. There are plenty of online places to go to understand how hard it is for people and what things like Herxing is for Lyme patients. Herxing is god awful to watch someone go through. LLMD's are good at customizing treatments but you have to find 1 willing to work with patients and you most likely are going to have to travel long distances to see them.

Again, thanks for your contributions to this thread. I was unfamiliar with Herxing until you mentioned it. My gosh, what a horrible situation your daughter is in. I am sure, after reading your posts, many prayers are going out to her, including mine.

 

[bwifan]

Here is a quick look at the numbers... Just doing simple math in your head these numbers are staggering what the number will be after 10 and 20 years... How many as well are going misdiagnosed or not even going to the doctor. Just look at these numbers and it is scary and speaks volumes...

CDC reports: Lyme disease infects 300,000 people a year. 10 times more Americans than previously reported. This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States,” says Dr. Paul Mead, chief of epidemiology and surveillance for CDC’s Lyme disease program.

ACCORDING TO THE CDC, LYME DISEASE IS THE FASTEST GROWING VECTOR-BORNE, INFECTIOUS DISEASE IN THE UNITED STATES.

FEWER THAN 50% OF PATIENTS WITH LYME DISEASE RECALL A TICK BITE.

FEWER THAN 50% OF PATIENTS WITH LYME DISEASE RECALL ANY RASH.

40% OF LYME PATIENTS END UP WITH LONG TERM HEALTH PROBLEMS.

SHORT TREATMENT COURSES HAVE RESULTED IN UPWARDS OF A 40% RELAPSE RATE, ESPECIALLY IF TREATMENT IS DELAYED.

THE NUMBER OF CASES REPORTED ANNUALLY HAS INCREASED NEARLY 25-FOLD SINCE NATIONAL SURVEILLANCE BEGAN IN 1982.

THERE ARE 5 SUBSPECIES OF BORRELIA BURGDORFERI, OVER 100 STRAINS IN THE US, AND 300 STRAINS WORLDWIDE
This diversity is thought to contribute to its ability to evade the immune system and antibiotic therapy, leading to chronic infection.

THERE ARE NO TESTS AVAILABLE TO PROVE THAT THE ORGANISM IS ERADICATED OR THAT THE PATIENT IS CURED.

 

[john4psu]

With the milder winter, my wife was doing some yard work last week. Sunday we found a deer tick (which can transmit Lyme disease) attached to the back of her leg. Our yard, in suburban Pittsburgh, is not heavily wooded, and she was not working in dense vegetation. She went to the doctor today and they said they have had several cases this week alone. I've spent considerable time reading about Lyme and, if not treated, it can cause you a lot of grief. This year, the tick population in the Northeast is predicted to be off the charts. The best defense is avoidance. If you frequent tick areas, check yourself, your family, and your pets, every time you are in harms way. We routinely do that and still missed one. This is serious stuff. Be careful.

Glad you found that tick FairG and got her to the doctor's. Thank you for the warning and advice.

 

[john4psu]

With a child who has chronic Lyme I cannot tell you the daily battle my daughter goes through each day. She is my hero. Never complains and I would watch her limp around the house in winter due to the cold and arthritis. Watching your kid go from a top athlete on the cross country and track and field to barely enough energy to get out of bed daily is crushing. The emotional and financial strain this has put on us is incredible. So many others are worse off. Have met Olympic athletes who in the prime of their careers were in wheel chairs less than a year later. My daughter has slowly started bouncing back a little. Problem besides the lack of energy and arthritis in a teenager was she always was cloudy thinking and started to have memory loss. It's a personal thing for my wife and me. Many don't understand the disease and think you take antibiotics and you're cured. For some that works, for many others it could not be further from the truth. My daughter was tested for almost 2 years with blood work and always came back negative. Finally my wife staying up all night crying at the computer doing research ignoring ALL the doctors and specialists who told my daughter nothing was wrong with her and it was all in her head found the European blot test which is so much more accurate than the U.S. tests. It's basically now the fastest growing disease in the U.S. and from what we can gather the CDC isn't ready to call Lyme chronic yet as the costs for insurance companies will be huge to treat Lyme. The scary part is so many have the disease and do not know it. Yes it can be transmitted sexually as well. My neighbor has Lyme in a bad way and now his wife has it as well. Doctors have told them he most likely transmitted Lyme to her. Just think of all the high school and college kids passing Lyme around. I would not wish this horrible disease on my worst enemy. Seeing what is does to people and having many in the medical community ignore it or says it's in your head or well the CDC doesn't recognize it so we can't do anything until they do.... The one positive is there are LLMD's now out there but few and far between. There are some natural remedies that help as well. But none of it is covered by insurance. Many are crippled by this disease and thankfully there are many forums and internet places to share information and help plus organize to get congress to ignore the lobbyists and do something. Very frustrating to say the least...

Thoughts and prayers go out to your daughter and your family bwi.

 

[fairgambit]

Glad you found that tick FairG and got her to the doctor's. Thank you for the warning and advice.

Yes, we were fortunate. I was surprised at the number posts here that mentioned they, or someone they knew, had Lyme. It is a public health crisis that is still flying under the radar. This summer is expected to be the worst tick season in history. I hope everyone who has read the sad story bwifan has told about his daughter will take precautions and spread the word.

 

[bwifan]

Yes, we were fortunate. I was surprised at the number posts here that mentioned they, or someone they knew, had Lyme. It is a public health crisis that is still flying under the radar. This summer is expected to be the worst tick season in history. I hope everyone who has read the sad story bwifan has told about his daughter will take precautions and spread the word.

Added some additional numbers to my post above... those numbers are staggering. Yet many are told take 2 weeks of antibiotics and you're cured. I am amazed at how passive the medical field is, and especially looking at those numbers above. You did a great service by alerting many here to be aware and ticks are out. Get tested if you find a tick on you. Even then monitor your body if the tests come back negative. If you feel those flu like symptoms are have other medical issues shortly there after press the Doctor harder. Doctor's do seem to be on the safe side now and even if the test come's back negative prescribe Doxy to be sure since there are so many tests that come back negative yet people have Lyme.

 

[jferretti]

Here's how scary a misdiagnosis or late diagnosis can be. A friend of mine started experiencing peculiar behavior with his wife. She had hallucinations, was obsessing about the cleanliness of the home, refused to socialize and exhibited signs of mental illness. He had her evaluated by MD's and psychologists and was eventually told she needed immediate counseling. She was hospitalized on a psych ward of a local hospital and was close to requiring a more extensive commitment. The husband was at a loss and was beginning to think he was losing his wife, at least mentally. It was chalked up to an undiagnosed head injury, empty nest syndrome, menopause, etc.

Finally a family doctor suggested a Lyme test. Bingo, positive. She went on antibiotics and within 6 months was back to her old self, with only occasional and mild symptoms, all mental. No physical manifestations of any kind were ever experienced and thus Lyme was never suspected.

 

[fairgambit]

Here's how scary a misdiagnosis or late diagnosis can be. A friend of mine started experiencing peculiar behavior with his wife. She had hallucinations, was obsessing about the cleanliness of the home, refused to socialize and exhibited signs of mental illness. He had her evaluated by MD's and psychologists and was eventually told she needed immediate counseling. She was hospitalized on a psych ward of a local hospital and was close to requiring a more extensive commitment. The husband was at a loss and was beginning to think he was losing his wife, at least mentally. It was chalked up to an undiagnosed head injury, empty nest syndrome, menopause, etc.

Finally a family doctor suggested a Lyme test. Bingo, positive. She went on antibiotics and within 6 months was back to her old self, with only occasional and mild symptoms, all mental. No physical manifestations of any kind were ever experienced and thus Lyme was never suspected.

That's an amazing story. Lyme is called a great imitator disease and people have been told they have ALS, MS, fibromyalgia, depression, and a whole bunch of others, when it was actually Lyme.

 

[The Spin Meister]

great question Cosmos what is different today? 30-40 years ago you might find a raisin size dog tick (species) every now and then, but never these little deer ticks.

I saw it mentioned earlier, but to repeat, dogs get Lyme too and like people it effects some more severely. Recommend a tick killer chewable like NexGuard or similar. My lab loves the field and before I bring him in I brush him out for ticks with a flea comb. I seldom find less than half a dozen on him and sometimes there are 20 or more. If you do not do this you get them in the house and on you. Deer ticks do not live long in the house, dying of dehydration within 24 hours, so that is a plus.

On the kill ticks on contact side you can use permethrin spray to take out the ticks which are on your clothes or gear. It is not for the skin of you or your dog so be careful. It also sticks around on fabric for some time. It is an exposure/benefit balance.

For your skin you can use a repellent like DEET - but DEET is a nasty chemical that dissolves plastic (like watch faces and glasses frames) and has that oily feeling. It also has some history of neurological issues on those exposed to it. A far better alternative are products that contain picaridin. First picaridin is a better tick repellent in terms of how long it is active. Second chemically it is a derivative of black pepper and does not carry the oily feel or the tox issues of a DEET. Sawyer has a picaridin product (spray and cream) as does Avon (skin so soft). Any of the "brands" will do so long as they say picaridin on the label - you have to check. As an added bonus, it matches DEET in mosquito repellency.

---
Glad to see that Skin so Soft is good for ticks. I have used it for years to keep away little black flies/gnats. Those buggers leave me with big welts that itch for days, worse than a bee sting for me. Always wondered if helped for ticks....thanks.

 

[T J]

Yeah, they are tuff little sob's. Some time in the freezer in a ziplock bag or air tight container fixes that.

Small glass jar with screw lid.
Keep some common rubbing alcohol in the jar at the bottom.

Drop ticks into the alcohol.
They are Goners!​

 

[cigarowl]

The first and only licensed vaccine against Lyme disease was developed by SmithKline Beecham (now GlaxoSmithKline). Given in a three-dose series, the vaccine had an unusual method of action: it stimulated antibodies that attacked the Lyme bacteria in the tick’s gut as it fed on the human host, before the bacteria were able to enter the body. This was about 78% effective in protecting against Lyme infection after all three doses of the vaccine had been given.

The vaccine, called LYMERix, was licensed in 1998. By 2002 SmithKline Beecham had withdrawn it from the market, and Pasteur Mérieux Connaught decided not to apply for a license for its own Lyme vaccine candidate, despite having already demonstrated its efficacy in a Phase III clinical trial. Today there are no vaccines available to prevent Lyme disease, and it is unlikely that any will be licensed in the near future. The debut and subsequent withdrawal of the Lyme disease vaccine has lasting implications for future vaccine development and use.

One other interesting point of information: Are any of you familiar with UTZI, the frozen body found in the melting glacier in the southern Alps on the Italian border? It was determined that the mummified body was encased in his frozen tomb for 5000 years. His body was preserved so well that they were able to determine what his last meal was and what material was used in making all his clothing and implements found with him. His DNA was easily collected and one disease he was found to be suffering from was.....Lyme Disease.

 

[81b&w]

I am afraid this is only going to get worse for many family's over time. Eventually the numbers will be just so overwhelming the research and pressure will become to great that the CDC will be forced to move and pharmaceutical company's and other's will put much more money into research.

Everyone who has read this post is affected by this, and considering this is a Penn State board, with my quick-rhymatic that's a lot of brain cells, and we all sound helpless, and we currently are. I have friends affected to different degrees and they feel helpless . What needs to happen for this to be brought to serious attention? It's crazy that I should even have to pose that question

 

[fairgambit]

Everyone who has read this post is affected by this, and considering this is a Penn State board, with my quick-rhymatic that's a lot of brain cells, and we all sound helpless, and we currently are. I have friends affected to different degrees and they feel helpless . What needs to happen for this to be brought to serious attention? It's crazy that I should even have to pose that question

Education is important. We can all pass the word among family and friends. I talked to my neighbor about this today and he was unaware of the seriousness of the Lyme Disease problem. He is better informed now. We can contact federal and state officials and voice our concerns. We can donate time and money to organizations that deal with Lyme victims and are working on cures.
I know there are a lot of problems in the world and we can't solve them all, but if you live in Pennsylvania, or other Northeastern states, this problem is right in your back yard. If nothing else we can read of ways to make our own yards tick free and help our neighbors do the same.