Article:Lyme disease is set to explode and we still don’t have a vaccine

[Arcadia]

Since quite a few board members are dealing with Lyme, Nova posted this New Scientist article on their Facebook page.

 

“Lyme disease is the most common infection following a pest bite in the US: the Centers for Disease Control estimates that 300,000 Americans contract Lyme disease each year, calling it “a major US public health problemâ€. While it is easy enough to treat if caught early, we are still getting to grips with lifelong health problems that can stem from not catching it in time (see “Do I have Lyme disease?“).

 

This is less of a problem when Lyme is confined to a few small areas of the US, but thanks in part to warmer winters, the disease is spreading beyond its usual territory, extending across the US (see map) and into Europe and forested areas of Asia

...

DO I HAVE LYME DISEASE?

 

The symptoms of Lyme disease, which you can get from a tick bite, aren’t always obvious. At the site of the bite, a red splotch will often start to grow into what looks like a bullseye target.

 

Not everyone gets this unmistakable sign, however. Over the next few weeks, flu-like symptoms, including aches and fever, can follow. Left untreated, Lyme disease can lead to a host of problems, chronic joint inflammation, facial palsy, issues with short-term memory, heart rhythm irregularities, and inflammation of the brain and spinal cord.

...

It’s best to see a doctor for a Lyme disease test – but not right away. Your antibodies to Lyme disease take weeks to form, so an early test can give a false reassurance. Wait four to six weeks before requesting a blood test.“

https://www.newscientist.com/article/mg23431195-800-lyme-disease-is-set-to-explode-and-you-cant-protect-yourself/

[OrganicJen]

Wow that's good to know.  We have a vacation place in the mountains and had very few issues with ticks, but this spring is was insane...there were tons.  Some aspects of the climate change in our area have been for the better but the growing tick population is aweful.  We may be getting some guinea hens.  

[Pen]

wait 4-6 weeks before requesting a blood test? then wait _____ to get results? 

[Arcadia]

wait 4-6 weeks before requesting a blood test? then wait _____ to get results?

From CDC explanation of the Immunoblot test, waiting 4-6 weeks seems to make sense because the tests for IgM antibodies are more reliable.

 

“Immunoblot tests for Lyme disease testing can detect two different classes of antibodies: IgM and IgG. IgM antibodies are made sooner, so testing for them can be helpful for identifying patients during the first few weeks of infection. The downside of testing for IgM antibodies is that they are more likely to give false positive results. Tests for IgG antibodies are more reliable, but can take 4-6 weeks for the body to produce in large enough quantities for the test to detect them.

...

Note on test result interpretation: It is not correct to interpret a test result that has only some bands that are positive as being “mildly†or “somewhat†positive for Lyme disease. The criterion that requires at least 5 IgG bands reflects the fact that people with Lyme disease have at least 5 antigens (specific molecules) detectable.“

https://www.cdc.gov/lyme/diagnosistesting/labtest/twostep/westernblot/index.html

[Chrysalis Academy]

But the CDC guidelines are completely unworkable and inconsistent in practice. My dd's IgM was positive (CDC positive, 5 bands) and it was rejected by the Kaiser doc because she said that IgM levels were only relevant in early disease, they shouldn't still be high after being sick a year so she would only accept the test of positive if the IgG was also positive (it was equivocal).  

 

The thing is, Lyme doesn't follow that typical pattern of rising-then-falling igM followed by rising IgG. Some people are never able to produce IgG antibodies. It is more common to have high IgM (perhaps reflecting chronic early stage immune system response that never becomes effective?) I don't think we know for sure why, but it's a common clinical pattern.

 

So the tests are gatekeepers to treatment, but the tests are notoriously unreliable - high false negative rate and only effective within a small window. Even the CDC says that the tests are meant for epidemiological purposes, not diagnostic purposes: 

 

"Lyme disease is diagnosed based on:

• Signs and symptoms
• A history of possible exposure to infected blacklegged ticks"

In practice, our HMO won't cover unless you get positive 2-tier testing with positive IgG. Even though the CDC says diagnosis should be based on symptoms + exposure.

 

It's a thoroughly f@#$-ed up situation.

[xixstar]

"set to explode", ha.  When I believe every family I know has had lyme's disease (several with chronic lyme), it seems like that statement is a little late. But well, I'm in a concentrated area and I surround myself with other folk that spend a great amount of time outdoors, so maybe I'm just special. 

[Arcadia]

In practice, our HMO won't cover unless you get positive 2-tier testing with positive IgG. Even though the CDC says diagnosis should be based on symptoms + exposure.

 

It's a thoroughly f@#$-ed up situation.

:grouphug:

Kaiser seems to have a monopoly on HMO plans here. Most companies my husband worked for only has Kaiser for HMO. His current employer has two HMO plans so people can don’t choose Kaiser. We heard some run around by Kaiser incidents from friends.

 

Is there a way to log a complain?

Our dispute was with Aetna and they paid us after six months of arguing. My husband has down time in his office and everyone from VP down has argued with insurance so it’s already counted as a task that can be done during work time.

[Amy in NH]

Actually, there is a vaccine. It was discontinued by the manufacturer.

 

https://www.historyofvaccines.org/content/articles/history-lyme-disease-vaccine

 

https://www.cdc.gov/lyme/prev/vaccine.html

[Guest]

Actually, there is a vaccine. It was discontinued by the manufacturer.

 

https://www.historyofvaccines.org/content/articles/history-lyme-disease-vaccine

 

https://www.cdc.gov/lyme/prev/vaccine.html

 

Ohhh my goodness. :cursing: :cursing: :cursing: :cursing: :cursing: :cursing: :cursing: :cursing: :cursing: :cursing:

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Lyme "exploded" last year because of the cyclical acorn drop...which led to more mice....which led to more ticks...which led to more tick buts & lyme infections.

[kewb]

Set to explode? I think the explosion has already happened.

All I will say is that Lyme and it's coinfection friends have shown me that it is not easy to be sick with something that doctors are arguing about whether or not what you have exists. While they are duking it out you are left in desperation and paying out of pocket and finally going broke in the hopes that the next treatment will offer some relief until you are left with woo woo science and snake oil salesmen. And you try that too, because you are desperate for something to help.

[wapiti]

There is controversy over currently-available testing parameters, which were changed the last time a vaccine was attempted so that the vaccinated people wouldn't test positive, or something....  I don't remember the details, but the story was unsavory and not comforting, to say the least.  As the old saying goes, I wouldn't touch that with a ten-foot pole.

 

There was at least one study in Europe involving mosquitos found to contain lyme.  I agree with the PPs that the explosion already occurred.  Personally, I suspect that the Western Blot may even be detecting other pathogens, potentially undiscovered ones.  The spirochete was only visualized under microscope in the early 80s.  So much is not understood about various pathogens and their subversion of the host's immune system to ensure survival.  I think the key lies with the health of the immune system, which itself is an incredibly complex topic that is likewise not well understood.

[Arcadia]

Set to explode? I think the explosion has already happened.

:grouphug:

 

Dr Richard S. Ostfeld in the article warned about it in 2015. He estimated the explosion to be in 2017-2018.

 

“The Hudson River Valley experienced a mouse plague during the summer of 2016. The critters were everywhere. For most people, it was just a nuisance. But for Keesing and Ostfeld, the mouse plague signaled something foreboding.

 

"We're anticipating 2017 to be a particularly risky year for Lyme," Ostfeld says.

 

Keesing and Ostfeld, who have studied Lyme for more than 20 years, have come up with an early warning system for the disease. They can predict how many cases there will be a year in advance by looking at one key measurement: Count the mice the year before.â€

http://www.npr.org/sections/goatsandsoda/2017/03/06/518219485/forbidding-forecast-for-lyme-disease-in-the-northeast

 

Dr Richard Ostfeld webpage has more information

http://www.caryinstitute.org/science-program/our-scientists/dr-richard-s-ostfeld

[Guest]

:grouphug:

 

Dr Richard S. Ostfeld in the article warned about it in 2015. He estimated the explosion to be in 2017-2018.

 

“The Hudson River Valley experienced a mouse plague during the summer of 2016. The critters were everywhere. For most people, it was just a nuisance. But for Keesing and Ostfeld, the mouse plague signaled something foreboding.

 

"We're anticipating 2017 to be a particularly risky year for Lyme," Ostfeld says.

 

Keesing and Ostfeld, who have studied Lyme for more than 20 years, have come up with an early warning system for the disease. They can predict how many cases there will be a year in advance by looking at one key measurement: Count the mice the year before.â€

http://www.npr.org/sections/goatsandsoda/2017/03/06/518219485/forbidding-forecast-for-lyme-disease-in-the-northeast

 

Dr Richard Ostfeld webpage has more information

http://www.caryinstitute.org/science-program/our-scientists/dr-richard-s-ostfeld

the mice explode because their food source does.

 

I think someone on wtm actually pointed me in that direction because I was talking about mice, last year. Heck if I remember who to give credit though.

 

http://www.caryinstitute.org/discover-ecology/podcasts/acorns-and-lyme-disease

[klmama]

Now I'm kicking myself for not getting out there sooner to rake up all the extra acorns and hickory nuts that fell this year.  Our indoor and outdoor traps have been empty, despite obvious increase in rodent numbers, and we just realized that a dab of peanut butter on a trap isn't nearly as interesting to a small critter as a buffet of nuts strewn everywhere their little legs can take them.

[SparklyUnicorn]

And people crap on me and laugh when I tell them I'm not going camping or hiking or spending any amount of time outdoors in wooded areas. 

 

 

[Carrie12345]

But the CDC guidelines are completely unworkable and inconsistent in practice. My dd's IgM was positive (CDC positive, 5 bands) and it was rejected by the Kaiser doc because she said that IgM levels were only relevant in early disease, they shouldn't still be high after being sick a year so she would only accept the test of positive if the IgG was also positive (it was equivocal).  

 

The thing is, Lyme doesn't follow that typical pattern of rising-then-falling igM followed by rising IgG. Some people are never able to produce IgG antibodies. It is more common to have high IgM (perhaps reflecting chronic early stage immune system response that never becomes effective?) I don't think we know for sure why, but it's a common clinical pattern.

 

So the tests are gatekeepers to treatment, but the tests are notoriously unreliable - high false negative rate and only effective within a small window. Even the CDC says that the tests are meant for epidemiological purposes, not diagnostic purposes: 

 

"Lyme disease is diagnosed based on:

• Signs and symptoms
• A history of possible exposure to infected blacklegged ticks"

In practice, our HMO won't cover unless you get positive 2-tier testing with positive IgG. Even though the CDC says diagnosis should be based on symptoms + exposure.

 

It's a thoroughly [email protected]#$-ed up situation.

 

It is simply horrific that an insurance company would override a doctor's judgment.  

We didn't have any issues with BCBS when treating dd without even testing her at all!

 

"set to explode", ha.  When I believe every family I know has had lyme's disease (several with chronic lyme), it seems like that statement is a little late. But well, I'm in a concentrated area and I surround myself with other folk that spend a great amount of time outdoors, so maybe I'm just special. 

 

My family has actually experienced FEWER ticks these past few years than in the previous decade.  I figure "set to explode" means elsewhere.  Here, they're just a way of life.

That said, no one in our house got Lyme in all those years that I charted everyone's bites.  The 3 that did were over these years that we've found fewer, and therefore probably got lazier about tick checks.

[Pink and Green Mom]

I live in FL and my son got Lyme disease.  The doctors, especially the infectious disease doctor at the local Children's Hospital, all bent over backwards trying to tell me it couldn't possibly be Lyme.  They kept saying his classic bullseye rash and positive tests weren't proof of Lyme because, and this is a direct quote, "there is no Lyme in Florida."  :banghead:

[SparklyUnicorn]

I live in FL and my son got Lyme disease.  The doctors, especially the infectious disease doctor at the local Children's Hospital, all bent over backwards trying to tell me it couldn't possibly be Lyme.  They kept saying his classic bullseye rash and positive tests weren't proof of Lyme because, and this is a direct quote, "there is no Lyme in Florida."  :banghead:

 

:huh:

[Chrysalis Academy]

I live in FL and my son got Lyme disease.  The doctors, especially the infectious disease doctor at the local Children's Hospital, all bent over backwards trying to tell me it couldn't possibly be Lyme.  They kept saying his classic bullseye rash and positive tests weren't proof of Lyme because, and this is a direct quote, "there is no Lyme in Florida."  :banghead:

 

It's so infuriating. It's like a race where they keep moving the finish line. The ID specialist I spoke to over the phone ruled out Lyme for my dd without even examining her. Without even seeing her. She listened to the list of symptoms and had no clue what to suggest instead of Lyme. They are offering nothing in terms of diagnosis and treatment.  

[Arcadia]

I live in FL and my son got Lyme disease. The doctors, especially the infectious disease doctor at the local Children's Hospital, all bent over backwards trying to tell me it couldn't possibly be Lyme. They kept saying his classic bullseye rash and positive tests weren't proof of Lyme because, and this is a direct quote, "there is no Lyme in Florida." :banghead:

From The Florida Department of Health

“In Florida, 673 cases of Lyme disease were reported from 2002 through 2011 (average 67 cases per year). Of these, 23% were acquired in Florida and 77% were acquired while the person was traveling in another state or country. Of the infections acquired in Florida, the majority were reported from counties in the northern and central regions of the state. Lyme cases are typically reported in Florida year-round.‘

http://www.floridahealth.gov/diseases-and-conditions/lyme-disease/index.html

[Pink and Green Mom]

From The Florida Department of Health

“In Florida, 673 cases of Lyme disease were reported from 2002 through 2011 (average 67 cases per year). Of these, 23% were acquired in Florida and 77% were acquired while the person was traveling in another state or country. Of the infections acquired in Florida, the majority were reported from counties in the northern and central regions of the state. Lyme cases are typically reported in Florida year-round.‘

http://www.floridahealth.gov/diseases-and-conditions/lyme-disease/index.html

 

Yep. 

 

And the expert doctor's response was that (a) it only happens north of where I live and (b) they believe most of the 23 percent supposedly contracted in FL was really contracted "elsewhere" and people don't realize it until they return to FL (son hadn't been out of the state in a year, mind you).  

 

The Department of Health took the claim seriously enough (called me, wanted detailed dates and places where we had been in the previous weeks) but the doctors still tried to tell me it couldn't possibly be Lyme.  When I asked them to tell me what it could be, they had no answer.

[Selkie]

My family has actually experienced FEWER ticks these past few years than in the previous decade.  I figure "set to explode" means elsewhere.  Here, they're just a way of life.

Same here. We're in the rural midwest (Illinois) and have always had loads of ticks and loads of Lyme in our area. But this year, only one of us had a tick bite and we only found a few on our dogs and none on our horses. It's odd, but I'll take it.