Just in: Largest ever study shows no geo correlation b/w Lyme and neurodegenerative disorders

Traveller I really respect and admire you for the support you've provided so many on this forum. My sense is that you are fairly exceptional compared to the average Lyme patient, both in having gotten it 40 years ago and being able to recover in 2 years from such a long standing infection. So as much as your particular case gives the rest of us hope I think it is not realistic to use it as an example of an average Lyme patient.

If you look at the stats Lyme infection rates have really has only increased greatly in recent years, whereas Alzheimers mainly affects the very elderly.

"Of those with Alzheimer’s disease, the vast majority (81 percent) are age 75 or older."
/www.dshs.state.tx.us/alzheimers/qanda.shtm

It's not impossible that these people were all hiking in their 60s or got it gardening, but I just think that the demographics don't overlap well. When combined with this recent study it makes me think other factors are at work.

I have watched some stuff by Alan McDonald and I think he is doing valuable research. I guess my point is that every community feels their microbe is "the one". If you go over to cpnhelp.org, they feel it's Cpn which causes Alzheimers among other conditions. At least the Lyme community is acknowledging coinfections and we also know that we don't know much about them. I think the value in this study is that it suggests that the geographic incidence of these diseases does not point to a tick vector transmission.

In my case I don't really have any interest in trying to pin all these diseases on Lyme, I just want to get better myself. If fewer diseases are associated with it then I consider this a win for me as I know it is already in my body.

I can't speak to the accuracy of that quote, but one of the interesting pieces of evidence of an infectious cause of MS can be found in this study:

"The Faroe Islands are a semi-independent unit of the Kingdom of Denmark and are located in the North Atlantic Ocean between Norway and Iceland.
...
Among native resident Faroese the first instance of symptom onset was in 1943, heralding a type 1 epidemic of 21 cases.
...
We believe the source of MS on the Faroes was their occupation by British troops for 5 years in World War II. We think they introduced a widespread, specific, persistent (but unknown) infection, probably asymptomatic, which we call the primary multiple sclerosis affection (PMSA). "
www.ncbi.nlm.nih.gov/pubmed/11165464

Seems unlikely that the British would have brought ticks with them, it more likely would have been some human-human transmitted microbe.

We've all seen the studies that say Borrelia shows up in various bodily fluids. But that is not the same as saying it's very transmissible that route. In all reality Lyme is probably not transmitted between people very easily, otherwise the epidemic would be much much worse than it already is. The distribution of these neurodegenerative diseases point to the involvement of a much more easily transmissible infectious agent.

Post Edited (project) : 11/16/2015 8:47:15 PM (GMT-7)

project, the Faroe Islands have migratory birds don't they? ships dock there, right?

One of the problem with studies like this that use data inherently flawed is they give ammunition to people who want to say "see there is no correlation".

Many people are never tested because of the "we don't have Lyme here" attitude. I'll bet though that if a veterinarian (or 20) was asked they would say of course there's Lyme here. My vet told me about 3 deaths in my area where autopsies showed that the person was infected with Lyme. That story is no where to be found. We have two of the leading medical schools in the country within 20 miles of my house, but there is only one doctor in the state that will actually diagnose and treat Lyme.

I wasn't infected here (NC), but if it was reported to the CDC then the little dot would be in NC. I have lived in CT, NJ, MA and NC. I was infected in CT. In an earlier post, I mentioned my mother when talking about using death certificates. I know she had Lyme but there was no reason to test for it because she would have never been able to withstand treatment. She also lived in FL for quite awhile. if she had been tested and diagnosed her dot would have been in FL.

Part of the problem is that the model the CDC is really for communical diseases that spread fairly quickly and are easily diagnosed. Like the measles outbreak that started at Disneyland last year. It has a fairly short incubation period and is easily diagnosed. If a doctor sees it they know what it is.

Their model doesn't work for things like Lyme that can go on for years and years before there is even a clue.

The other problem with the study is that it assumes that Lyme patients can be easily pulled out of the general population with some meaningful piece of data. When AIDS/HIV was first discovered it was because someone noticed that gay men were dying of a very rare type of pneumonia. It still took years for them to figure out what was happening and then isolating "patient 0". But there was a category most people could wrap their head around. It was later after it was determined that HIV was being transmitted through bodily fluids that other population categories were added in like IV drug users and hemophiliacs. Imagine that. It was in the blood supply. Now they test all blood donations for HIV before it is used. Wonder how many people have donated blood without knowing they are infected with Lyme and Co? My driver's license lists me as an organ donor, but when I go get it renewed in the next two weeks I will have to change that.

You are right that Traveler is "exceptional" but not in the way you think. I'm sure there are many more people out there that have been sick for a very long time. I'm one. I can trace my symptoms back to the age of 16, in CT, more than 35 years ago. I got lucky and the planets all lined up. A series of seemingly unconnected events led me to get tested for Lyme and I live in a "we don't have Lyme" state, which is ludicrous considering that it has been reported in 78 out of 100 counties, with 10 being endemic. Traveler is exceptional because she was diagnosed as a child with RSF. She kept looking when she continued to be sick. She found a doctor quite a while ago who treated her for Lyme using abx. Even though the treatment failed, she continued to look for an answer. She decided to go the herbal route at a time when herbal medicine was either brushed off as "hippy" thinking (my 16 yr old's word, LOL) or quack science. She was persistent and was rewarded by the Lyme and Co going into submission. She has also blessed all of us by sticking around to help complete strangers when her life would be a lot easier if she didn't commit to helping us. She answers the same questions over and over even though

Most people just give up looking for an answer, which is probably why you don't see many people on the forum who have been sick that long. Others just want to put it behind them, so after getting well they don't come back.

So the CDC geographic data is flawed and death certificates don't provide a good basis for determining the population of people who have died as a result of this DD. That means all conclusions made as a part of this study are invalid. The science just isn't there.

I'm sure it would surprise you to know that apparently Malaria is making a comeback in the United States. Seriously. That's what the health department in Maryland has determined. There was an outbreak there recently. A whole bunch of people were diagnosed with Malaria. When they investigated the cases they verified that it was Malaria by imaging it under a microscope. Questioning of all the people infected determined that no one had been out of the country. Conclusion, it was making a resurgence.

There has not been a Malaria outbreak in the US in forty years but since Malaria is a disease that we know about and the parasite imaged in the microscope looked like Malaria, so it must be Malaria. It's next to impossible to tell Babesia from Malaria even (or especially) under a microscope. So was it really Malaria, no likely but it's unlikely that anyone will admit their conclusions were wrong. So I expect we be hearing about more Malaria outbreaks and they WILL be geographically co-located.

Sorry to get on my soapbox everyone.

Hope everyone has a good day.
Kim

All the controversy comes from bad testing.

Having a disease that can be so easily treated in early stages with antibiotics but lacking a reliable test is so embarrassing (and dangerous) in so many ways that i can't really find excuses for CDC no matter how many studies like these they publish. Yes i pasted the link to the study but CDC should do more than just tell us what we DON'T have. "You will not develop ALS". Fine ! Can we get my Chronic Lyme and my false negatives fixed now, pretty please?!

Instead of doing statistics over existing data, they'd better start developing those treatments and reliable tests that work and pick this bacteria early on so that they can stop this growing epidemic.

If this ridiculous state of affairs does not get resolved soon, we can start moving the capital of the United States to Lyme, Connecticut. And the EU capital to Augsburg, Germany... we'll just change our flags and instead of stars we'll draw spirochetes, add Cat's claw to tap water and create Herx day as the 8th day of the week, between Sunday and Monday :(

I'm upset.

I was one that contracted Lyme in the 70's - 1970 to be specific - and I had lived in only 3 states by that time - Central California; Reno, Nevada; and northern Idaho. Those states are still not recognized for Lyme infections - now 45 years later. I now live in Arkansas and will likely die here - but I also got infected with Lyme (so did my husband) right here.

And there are plenty of means by which Lyme is transmitted beside by human contact or a tick. There are plenty people that have never been outside the "concrete jungle" and have contracted Lyme and other tick-borne infections. Limiting our beliefs that this is as big as it is will never serve any good - that's exactly how I was left to die (quite literally) because "there is no Lyme in Arkansas" and since there is no such thing as chronic Lyme, then of course I couldn't have had it as a child and still have it as an adult.

The garbage in garbage out idea doesn't really hold a lot of water in this case. To just suggest that we don't have any idea which areas have a high incidence of Lyme is just another example of either Lyme-brain or deliberately ignoring the obvious.

We know where Lyme is endemic, the states, the countries. We may not have precision as to the exact rates of infection as many cases are missed but we certainly know that some areas are low infection and some are high. Trust me I have lived in both New York State and Colorado, and I am very confident that the rate in Colorado is probably 1000 times lower as the CDC data suggests. It's not that people in Colorado all have Lyme and are just oblivious to their tick bites, they really mostly don't have Lyme. The people I have met that do have it have moved here from the east coast where they got it, but people don't move around enough to come anywhere close to changing the distribution meaningfully. In New York state people around you are constantly getting bit, becoming sick, and there are Lyme doctors everywhere.

www.cdc.gov/lyme/stats/tables.html

The question is how many misdiagnoses and death certificate errors would need to occur in order to make up for the 1000 fold difference in the infection rates between non-endemic areas and hot spots. It is not difficult to see that there is really no way the medical system would be missing ALS and Alzheimers cases and causes of death at the level required to produce the no correlation result that was found.

I do believe these neurodegenerative conditions are caused by infections. Anecdotally a family friend had a bunch of chronic infections including Lyme and has had CFS for decades. A few years ago her husband who had been healthy the whole time suddenly came down with ALS and died not long afterwards. I just don't think there is going to be a single smoking gun for these types of conditions. As J Sandunes mentions the the testing is still in a terrible state and I suspect that there are many as of yet undiscovered co-infections that probably will contribute in some way.

project, perhaps the reason for industrialization associated with higher rate of dementia deaths is people living longer lives in industrialized countries. It says "age standardized" but it isn't clear what that means. compare to:

www.worldlifeexpectancy.com/world-life-expectancy-map

and lo, the life expectancy rates are higher in those countries which had the higher rates of deaths from dementia.

although your position may be true, and supported by what you have seen, the amount of rigor that would be needed to be convincing to a majority of scientists is well beyond what we have seen or discussed.

also, had i been deliberately ignoring the obvious how do you explain the CDC data being completely wrong in Colorado? if non lyme-brained scientists can be so off, is the data then not quite obvious?

there are many obstacles to getting accurate lyme distribution data: nobody is able to test for all the strains, nobody is able to test a sufficient amount of ticks covering the nation (or globe) for each strain, nobody is able to conclusively say that only ticks transmit lyme, people are only tested when they are suspected of lyme, and finally the available tests are faulty. not one but all of these need to be addressed (or at least the last two).

in summary, the way i am looking at it is not by whether i could convince a given person that lyme is a cause of als/ms/alz, but whether i could convince a majority of scientists. all of these sort of questions would be raised in review.

Why would we rely on the CDC for information on where Lyme is found? That's like asking a blind man to describe and elephant when he had never seen one or been near one. According to the CDC, I could have never been infected with tick-borne disease when I was.

If Lyme wasn't a factor in the areas that I lived, then why did I have these infections? I have 2 fully CDC positive WB's for Lyme & RMSF.

According the the CDC, herbs are dangerous and shouldn't be used - yet that was the only thing to heal me. My stats will never show that I was infected in California or Idaho, and they have been ever so kind as to not count my positive test for Arkansas as well. So again, why would we trust them for the most accurate numbers of these types of infections?

So since the CDC says that Lyme is NOT endemic (characteristic of or prevalent in a particular field, area, or environment) in the places I lived - yet not only have I, but many others that I talk with have Lyme, I honestly don't see how anyone can consider that the CDC knows much of anything about these infections, where they are, what areas are endemic and what areas are not, how to treat them, or what's effective in preventing the infections.

And there are over 100 different strains of Borrelia that are known to cause human illness. There's not a whole lot of mystery here, just denial - just like happened with AIDS/HIV, The Tuskegee Syphilis Experiment, and many others.

There are pubmed articles about mosquitoes with the Borrelia bacteria, so it's not really something that can be denied.