posted
I would love it if someone could help me understand this.
According to several sources, papers, and articles Ive read, the average reported annual incidence for Ehrlichia is 0.7 cases per million population .
That means that annually, there is less then one case per MILLION of ehrlichia.
So, if you've read either of my other 2 threads, you will see that I recently tested absolutely positive for ehrlichia (and babesia).
So if it is true that the incidence of ehrlichia is less then 1 case per million, then it logically would follow that I am one of these "one case in a million" people.
Also, given those statistics, even if its 1 person per million AND you assume that all cases are in the United States, that would mean there are less then 300 ehrlichia cases per year....How can that be?
Would I be correct in assuming there are more then 300 people with positive ehrlichia tests on this forum alone? Surely I am not the only one!!
So how does this make sense? How can so many sources claim "0.7 cases per million anually", and yet there seem to be WAYYYYYYYY more people then that with positive ehrlichia test results?
Posts: 35 | From NJ | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As you are new to all this, sadly, you will soon see that the statistics are just out of thin air.
What matters is what you have, what each patients has. If you have it, treat it and focus on what's ahead. It will make you dizzy trying to decipher IDSA justifications that say it's not big deal.
Just as with lyme, the IDSA and the CDC has chosen a way to ignore reality.
For instance, I was dx with lyme, babesia and Human Monocytic Ehrlichia (there are at least 2 types, HGE is the other main one). But my doctor said there is no lyme in my state so my numbers were never counted.
That happens all the time. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I tested positive for Ehrlichia as well, very positive. But my Lyme tests were technically CDC negative. Go figure.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Have you seen the film "Under Our Skin"? That explains a lot. You can order your own DVD.
UOS wins top award at International Health Film Festival
UNDER OUR SKIN was just awarded ``Best Feature Film-Silver Award'' at the 1st International Health Film Festival in Kos, Greece. The tiny island in the eastern Aegean sea was the home to Hippocrates, father of medicine. Over 80 films competed and were juried by industry professionals as well as physicians.
This fully-loaded DVD is updated with new data and an hour of bonus footage, including interviews with the filmmakers and subjects, theatrical trailer, character updates, and deleted scenes.
Also includes director's commentary, Spanish and French subtitles, closed-captioning, and a 32-page informational booklet.
And look for extended interviews with bestselling author Amy Tan and Lyme discoverer Dr. Willy Burgdorfer, plus a cameo by U2s The Edge! $34.95 (Orders start shipping on 9/29)
posted
Consider the SOURCE when reading things about Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Most of us have never been reported. I just found out, much to my surprise, that my positive Lyme test was reported---but to the city dept. of health, not the state.
And the positive Ehrlichia and Mycoplasma weren't reported. I think it's very rare for them to be reported. NOt to mention all the people that have it, but aren't diagnosed!
Posts: 3792 | From around | Registered: Mar 2008
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Yes, I assumed that the statistics I've read, despite being widely accepted and perpetuated by many "reputable sources" (including the CDC)...must not be accurate.
When I read studies and papers which stated the incidence of ehrlichia as being "0.7 cases per million", and "302 cases annually", and then tried to reconcile that with the fact that I received a positive dx, and many people here have as well....it just didn't add up.
So once you see this discrepancy, you must decide where the error is. Are the statistics and studies grossly inaccurate, or are a great number of patients being given bogus diagnoses and false positives.
It seems clear to me that it is the statistics and studies which are inaccurate.
I clearly need to do some more research, but I am somewhat baffled as to why there is SO much misinformation regarding tick-born infections in particular.
Why is it that this particular set of infections has been set apart and become the target for so much misinformation and ignorance? Is the medical community truly ignorant and uninformed in this area, or are we being deliberately mislead??? The answer to that question seems supremely important to me.
There are certainly many other diseases, chronic in nature, which are extremely expensive to treat.
For example, insurance companies would certainly love to deny or question the validity of an AIDS diagnosis. AIDS is an unbelievably expensive disease to treat- and yet we do not see grand attempts by the medical community and insurance companies to generate doubt regarding AIDS and its diagnosis, and we do not see this culture of misinformation and ignorance.
So why is it that tick born diseases in particular have been singled out and criticized to the point that most doctors fail to diagnose patients who clearly have this disease??
It would be very easy to say "the misinformation and lack of understanding regarding tick-born infections is due to deliberate deception by insurance companies so that they can avoid paying out to those suffering from these diseases".
However, as I pointed out with the AIDS example, there are MANY chronic diseases which are far more costly to treat, and for these diseases, there does not seem to be any similar attempts to hide the truth or delegitimize them.....
So...what gives?
Posts: 35 | From NJ | Registered: Aug 2009
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I very much want to see "Under our Skin", and will order it tonight- I cannot wait to see it.
However, would you mind briefly summarazing the argument the movie makes regarding why there is so much misinformation and ignorance surrounding Lyme in particular.
If you read the post I made right above this one, you will see I ask this question in a bit more depth. Thanks-SH
Posts: 35 | From NJ | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Mostly because I doubt anyone here has the energy to really explain this, and there is no way that I can with my arms/hands or energy level.
These questions are all explained in UNDER OUR SKIN. It is amazing and explains it all. It would be about $40, incl. shipping to get your own DVD.
Well worth it. I can't believe I had it for such a long time before watching it. =========
Have your read "Cure Unknown" by Pam Weintraub? That also answers many questions and offers hope. It tells how she got much, much better.
Your library can get you a copy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I understand that it would be difficult and time consuming to summarize the argument the movie makes regarding why there is so much controversy and ignorance about lyme in particular BUT...
Would you mind just quickly answering this:
The way I see it, there are only 2 possibilities which explain why there exists this culture or misinformation and ignorance regarding lyme:
1-The medical community is genuinely (for whatever reason), misinformed, uneducated, ignorant regarding this particular set of diseases.
2-For some reason (money in particular) the public is being DELIBERATELY mislead by the medical community/ insurance companies.
As I said, it seems to me that these are the only 2 possibilities which could account for the lyme phenomenon (misinformation, criticism, ostracism, etc).
So its a question of-is the medical community truly ignorant on this subject, or is there deliberate deceit occurring?-SH
Posts: 35 | From NJ | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Both: truly ignorant on this (very complex) subject, & deliberate deceit -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Both: truly ignorant on this (very complex) subject, & deliberate deceit - [/QB]
Agree!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The medical community is being told by the Infectious Disease Society of America (IDSA) that lyme disease is rare and easily treated.
The IDSA is the branch of medicine responsible for infectious diseases such as lyme disease. They are teaching the doctors in this country that positive lyme tests are "false positive--" that lyme is rare. And, if a person happens to really have lyme, it is no big deal. It just takes a maximum of 30 days of doxy to cure them.
Now, why the IDSA is doing this is another question. The answer will always be speculation unless one of these 12 or so doctors ever tells us why they are behaving this way.
Here is a free video you can watch now: A Boston TV station did a great show on lyme disease a number of months ago. Here is the link to it: http://www.kettmann.com/Lyme
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
The lyme doctors in this video who were asked this question basically say that the IDSA staked out their position prematurely (before enough evidence was in) and now out of pride or whatever, they refuse to admit they were wrong. So, they stand their ground and keep putting out their view of the situation.
Because the IDSA is the authority in this field, the lyme doctors formed the ILADS (International Lyme and Associated Diseases Society) to have an opposing society and so get a voice in this debate about lyme disease.
Burrascano testified before the U.S. Congress in the 1990s that there were conflicts of interest in the medical community (money interests such as patents on lyme tests, government grants to universities, etc.) that cause them to not want to change their stand on lyme disease. He stated that he feared retalliation for his testimony. Sure enough, within 2 years he was investigated by his state medical board and had to spend years and hundreds of thousands of dollars in attorney's fees defending his way of treating lyme disease.
He is not the only doctor who has gone through this. That is why we don't use doctors names here. We don't want to make it easy for them to find out who our doctors are who are ignoring the IDSA guidelines and treating us long-term and getting us well.
The Attorney General in Connecticut recently took the IDSA to court for conflicts of interest by the panel who created the IDSA lyme treatment guidelines (that say that 30 days is the most it takes to cure lyme). Rather than face him in court, the IDSA agreed to set un another panel without conflicts of interest to review their lyme treatment guidelines and make any changes they deemed necessary.
That panel just held hearings on this subject a few months ago in Washington D.C. Some of our doctors testified at the hearings.
To read about all this on line, look up "Blumenthal" (the attorney general) and "IDSA" and "lyme".
Posts: 9931 | From Maryland | Registered: Dec 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I have read Ehrlichia is a basket for putting all tick infections in. The best way to get rid of them all.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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I keep trying to catch up with your multitude of posts.
READ "CURE UNKNOWN" BY PAM WEINTRAUB! READ IT! READ IT! Get the point? It will explain it all.
Not every disease is reported properly. I don't think the CDC tracks Ehr like it does Lyme. There are certainly many more cases than are reported.
Also, Ehr is usually overlooked when someone is diagnosed with Lyme. I wasn't tested for it. I know at least 3 other people who have Lyme and were never tested for Ehr.
But it is IRRELEVANT YOU TESTED POSITIVE! You have it. It doesn't matter what the odds were, you got it, man.
How many people get hit by meteorites every century? Do the odds matter if you get hit by one?
James
PS did I mention read "Cure Unknown"? Posts: 872 | From New York City | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub
In addition to discussion of lyme politics, this details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.
If funds are tight, you might see if someone in your local lyme support group could loan this DVD to you for a few days. I cannot tell you how important it is to see this film, and how empowering.
This fully-loaded DVD is updated with new data and an hour of bonus footage, including interviews with the filmmakers and subjects . . .
UOS wins top award at International Health Film Festival
UNDER OUR SKIN was just awarded ``Best Feature Film-Silver Award'' at the 1st International Health Film Festival in Kos, Greece. The tiny island in the eastern Aegean sea was the home to Hippocrates, father of medicine. Over 80 films competed and were juried by industry professionals as well as physicians.
- note: 100% of proceeds from product sales support the film's outreach campaign. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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