May 4, 2016
Even with the amount of chatter I am going this year about this tick-borne situation, people are like “That doesn’t make sense” or “I thought it was easy to figure out” or. . ."my dog had it."
Also - as a coworker pointed out: "Listen, if it was such a big issue, everyone would have it."
You do not hear many cases of Lyme for reasons that are on the level of X-File weirdness. They are complex and political. They would involve people saying, "I was wrong" and also would involve insurance companies to dish out more money. No one wants to say they were wrong and no one wants to lose more money.
I Never Knew Anyone With Lyme
Let's talk about the people who have Lyme in your life. Because you probably know someone. The problem is the entity that controls the diagnosis. If the government says you do not have Lyme, how would you know you had Lyme?
How much do you trust the Centers for Disease Control (CDC) - knowing if a doctor goes against the testing or treatment guidelines proposed by this entity, s/he can be sued by insurance for fraud and lose his/her licences.
Ok, ok - too weird. I know, I know. It's ok. Unless you are a Lymie, that does sound really cuckoo.
Testing
Let's talk facts. You don't hear about Lyme because there is no accurate testing.
The Ezyme-Linked Immunosorbent Assay (ELISA) is the go-to standard according to the CDC. The CDC and medical community will not give you a diagnosis or treatment if you don’t have a positive result with this test. 52% of patients who are administered the ELISA test, who are positive for Lyme, will test negative.
The 48% who test positive on the ELISA do not get a diagnosis or treatment. A Western Blot test need to be administered to confirm the results of the Lyme infection.
The WB has 10 bands that are indicators for Lyme. The CDC says you need to have 5 triggered bands to have a positive diagnosis. That means, if the Lyme in your body only triggers 4 bands, you cannot have Lyme and you will not be treated.
If you are sick enough at the time of testing, or have been administered steroids for pain, you will be lacking the antibodies that trigger in testing. No antibodies, no positive result, no more testing, no treatment.
Goodbye. It's in your head. You have MS (or something chronic and horrible). Goodbye.
The DNA Test
There is also a DNA, the Polymerase Chain Reaction (PCR) test that is considered the most accurate. Any test that is a clinical test where someone looks for the proteins and bacteria is considered more accurate.
There are even labs that will take your fluids (all fluids) and have someone actually look for the spirochetes. (Thanks for the pic, Wiki!)
However, you need to send it to the right lab - they are not covered by insurance. And by "right lab" I know you think I mean the lab is clean and employees smart people.
Nope.
The CDC had issued a statement saying these types of testing must be given under extreme caution and most of the labs (back when I was sick, all the labs) that offered this could NOT carry the “FDA approval” status.
So, if you had a test done and the infection was found through a DNA type test or a lab that searches for infection – the CDC would discount the test because it was not a government approved lab. A doctor could not issue treatment without risk of losing his/her licenses for administering drugs for a condition the patient didn’t have.
Sorry. This technology is still not an option and still not approved. Not for Lyme, not for any infection. According to the people with your best interests in mind, 100% of the time, the ELISA is just fine.
Beyond everything you have just learned - Lyme is such an insidious thing, it's a Spirochaete that actually screws itself into you cells. Science is beginning to believe it is more than a common bacteria.
If you have heard of the following diseases, you might know someone who tested negative for Lyme and lost his/her chance at a full, normal life due to inaccurate and bad testing practices:
(Not a complete list - also I was given diagnosis of Ankylosing Spondylitis)
This is not to say everyone who has these diagnoses has Lyme – these are real and critical and horrible sicknesses. These are chronic, debilitating conditions you do not want to have and you certainly don't want to be told you have when you have a tick-borne illness that could be found, cured and solved if it wasn't for ignorance and politics.
These are just the clinical (that means, “looks like you have it”) diagnosis that over 48% of people who have Lyme were told they have or are being treated for without hope of being rechecked.
Unfortunately, the medications and therapies for most of these sickness don’t work for a Lymie or someone with a tick-borne illness.
Tracking the CDC
The CDC has always claimed it is acting in the best interests of people. I believe it tries, as an entity. But, as with anything that is government and big - it will not return power and information and decisions to doctors and people.
One of the main concerns is taking antibiotics long-term
In 2014, the CDC reported:
Per the article called Lyme Disease in U.S. Is Under-Reported, CDC Says things have been mentioned but not corrected. The article statesL
More recently, I find people saying they have known someone with Lyme but that person just slept for a day and got better. Most of them had the bull's eye rash - which is pretty much the touch of God's hand of protection. . according to people like me who never had it.
Or people who couldn't prove they had it to a doctor. At one time, if you did not show a doctor the bull's eye rash, you did not have Lyme.
It's the age old myth of Lyme - you get a big rash right where you can see it and you know you have Lyme. Then you get 15-30 oral antibiotics and you feel like you got hit by a bus and then you are fine.
Estimates of patients who develop a Lyme rash vary widely, ranging from about 30%-80%. For example, a CDC report on Lyme carditis, which can be fatal, found that only 42% of cases had a rash.
Let's say 42% of people get a rash - that rash could be under your hair, in the crack of your butt, look like a spider bite or other type of bite or be so small you don't notice it. If you are romping around outside, you might not see it over a sunburn. There might be 80% of cases who have a rash, but it need to be noticed.
Thoughts
There are many dark and deep conversations and controversies around Lyme. The amount of money chronic Lyme and everything is. Really, all that cost could be removed if we just educated the public and doctors about Lyme and treated Lyme.
Tick-borne illnesses are a long while ago. I feel if we could just get Lymeis tagged as Lyme patients and gave them antibiotics and care, the amount of money spent later would be less. And people who have other chronic conditions would get better treatment because Lymies wouldn't be sucking up the treatments and resources for a condition they don't have.
Legislation
Here is an interview from WGBH news - some of the information about the 97% thing is, well, you just read everything up to here, so. . .you know what that means.
But, this will introduce you to chronic Lyme - and you will see a woman who looks fine (other than some slurred speech) tell you she has a condition. But she doesn't look sick.
I thought the fact that 8 senators who were are a conference to talk about a Lyme bill got Lyme. Because of who they were, they got treatment. We'll see if they become chronic.
Other Research
Lyme Research Alliance
Lyme Disease Org
Also - as a coworker pointed out: "Listen, if it was such a big issue, everyone would have it."You do not hear many cases of Lyme for reasons that are on the level of X-File weirdness. They are complex and political. They would involve people saying, "I was wrong" and also would involve insurance companies to dish out more money. No one wants to say they were wrong and no one wants to lose more money.
I Never Knew Anyone With Lyme
Let's talk about the people who have Lyme in your life. Because you probably know someone. The problem is the entity that controls the diagnosis. If the government says you do not have Lyme, how would you know you had Lyme?
How much do you trust the Centers for Disease Control (CDC) - knowing if a doctor goes against the testing or treatment guidelines proposed by this entity, s/he can be sued by insurance for fraud and lose his/her licences.
Ok, ok - too weird. I know, I know. It's ok. Unless you are a Lymie, that does sound really cuckoo.
Testing
Let's talk facts. You don't hear about Lyme because there is no accurate testing.
The Ezyme-Linked Immunosorbent Assay (ELISA) is the go-to standard according to the CDC. The CDC and medical community will not give you a diagnosis or treatment if you don’t have a positive result with this test. 52% of patients who are administered the ELISA test, who are positive for Lyme, will test negative.
The 48% who test positive on the ELISA do not get a diagnosis or treatment. A Western Blot test need to be administered to confirm the results of the Lyme infection.
The WB has 10 bands that are indicators for Lyme. The CDC says you need to have 5 triggered bands to have a positive diagnosis. That means, if the Lyme in your body only triggers 4 bands, you cannot have Lyme and you will not be treated.
If you are sick enough at the time of testing, or have been administered steroids for pain, you will be lacking the antibodies that trigger in testing. No antibodies, no positive result, no more testing, no treatment.
Goodbye. It's in your head. You have MS (or something chronic and horrible). Goodbye.
The DNA Test
There is also a DNA, the Polymerase Chain Reaction (PCR) test that is considered the most accurate. Any test that is a clinical test where someone looks for the proteins and bacteria is considered more accurate.
There are even labs that will take your fluids (all fluids) and have someone actually look for the spirochetes. (Thanks for the pic, Wiki!)However, you need to send it to the right lab - they are not covered by insurance. And by "right lab" I know you think I mean the lab is clean and employees smart people.
Nope.
The CDC had issued a statement saying these types of testing must be given under extreme caution and most of the labs (back when I was sick, all the labs) that offered this could NOT carry the “FDA approval” status.
So, if you had a test done and the infection was found through a DNA type test or a lab that searches for infection – the CDC would discount the test because it was not a government approved lab. A doctor could not issue treatment without risk of losing his/her licenses for administering drugs for a condition the patient didn’t have.
Sorry. This technology is still not an option and still not approved. Not for Lyme, not for any infection. According to the people with your best interests in mind, 100% of the time, the ELISA is just fine.
Beyond everything you have just learned - Lyme is such an insidious thing, it's a Spirochaete that actually screws itself into you cells. Science is beginning to believe it is more than a common bacteria.
Borrelia burgdorferi [Lyme] can convert to a metabolically dormant cyst in natural environments and even in humans. The cyst form allows the bacterium to survive inhospitable conditions and to elude host immune defense mechanisms. - World of Microbiology and Immunology
You Know Someone Dying of Lyme
Lyme has long been known as the Great Imitator. The symptoms are diverse and different in different people. I guess, I never knew anyone who got smarter because of Lyme or didn't feel like they got hit by a bus. But, some people have seizures, some are paralyzed, I had blackouts - some get arthritis. All the clinical symptoms, the display of Lyme looks like everything from the common flu to ALS.If you have heard of the following diseases, you might know someone who tested negative for Lyme and lost his/her chance at a full, normal life due to inaccurate and bad testing practices:
- Alzheimer’s Disease
- Arthritis
- Attention Deficit Disorder (ADD)
- Chronic Fatigue Syndrome (CFS)
- Colitis
- Crohn’s disease
- Early Amyotrophic Lateral Sclerosis (ALS)
- Encephalitis
- Fibromyalgia
- Fifth’s disease
- Gastroesophageal Reflux Disease
- Guillain-Barre Syndrome (GBS)
- Infectious Arthritis
- Infectious Mononucleosis
- Interstitial Cystis
- Irritable Bowel Syndrome (IBS)
- Juvenile Arthritis
- Lou Gherig’s Disease (ALS)
- Lupus
- Multiple Sclerosis (MS)
- Parkinson’s Disease
- Systemic Lupus
(Not a complete list - also I was given diagnosis of Ankylosing Spondylitis)
This is not to say everyone who has these diagnoses has Lyme – these are real and critical and horrible sicknesses. These are chronic, debilitating conditions you do not want to have and you certainly don't want to be told you have when you have a tick-borne illness that could be found, cured and solved if it wasn't for ignorance and politics.
These are just the clinical (that means, “looks like you have it”) diagnosis that over 48% of people who have Lyme were told they have or are being treated for without hope of being rechecked.
Unfortunately, the medications and therapies for most of these sickness don’t work for a Lymie or someone with a tick-borne illness.
Tracking the CDC
The CDC has always claimed it is acting in the best interests of people. I believe it tries, as an entity. But, as with anything that is government and big - it will not return power and information and decisions to doctors and people.
One of the main concerns is taking antibiotics long-term
In 2014, the CDC reported:
Lyme disease is the most commonly reported vectorborne illness in the United States. In 2014, it was the fifth most common Nationally Notifiable disease. However this disease does not occur nationwide and is concentrated heavily in the northeast and upper Midwest.Due to outrage and awareness, a year after this statement was issued a 2015 report stated that the CDC had grossly under reported and recorded Lyme. Finally, logic! That whole 52% of cases that were being missed is an issue!
Per the article called Lyme Disease in U.S. Is Under-Reported, CDC Says things have been mentioned but not corrected. The article statesL
About 329,000 cases of Lyme disease occur every year, researchers from the U.S. Centers for Disease Control and Prevention found in their analysis of a nationwide health insurance claims database for 2005 through 2010.
That's much higher than the 30,000 confirmed and probable Lyme cases reported to the CDC in 2010.
But it tracks fairly well with a previous CDC estimate of about 300,000 Lyme disease cases annually, said lead author Dr. Christina Nelson, a medical epidemiologist with the CDC's division of vector-borne disease.Let's Chat Rash
More recently, I find people saying they have known someone with Lyme but that person just slept for a day and got better. Most of them had the bull's eye rash - which is pretty much the touch of God's hand of protection. . according to people like me who never had it.
Or people who couldn't prove they had it to a doctor. At one time, if you did not show a doctor the bull's eye rash, you did not have Lyme.
It's the age old myth of Lyme - you get a big rash right where you can see it and you know you have Lyme. Then you get 15-30 oral antibiotics and you feel like you got hit by a bus and then you are fine.
Estimates of patients who develop a Lyme rash vary widely, ranging from about 30%-80%. For example, a CDC report on Lyme carditis, which can be fatal, found that only 42% of cases had a rash.
Let's say 42% of people get a rash - that rash could be under your hair, in the crack of your butt, look like a spider bite or other type of bite or be so small you don't notice it. If you are romping around outside, you might not see it over a sunburn. There might be 80% of cases who have a rash, but it need to be noticed.
Thoughts
There are many dark and deep conversations and controversies around Lyme. The amount of money chronic Lyme and everything is. Really, all that cost could be removed if we just educated the public and doctors about Lyme and treated Lyme.
Tick-borne illnesses are a long while ago. I feel if we could just get Lymeis tagged as Lyme patients and gave them antibiotics and care, the amount of money spent later would be less. And people who have other chronic conditions would get better treatment because Lymies wouldn't be sucking up the treatments and resources for a condition they don't have.
Legislation
Here is an interview from WGBH news - some of the information about the 97% thing is, well, you just read everything up to here, so. . .you know what that means.
But, this will introduce you to chronic Lyme - and you will see a woman who looks fine (other than some slurred speech) tell you she has a condition. But she doesn't look sick.
I thought the fact that 8 senators who were are a conference to talk about a Lyme bill got Lyme. Because of who they were, they got treatment. We'll see if they become chronic.
Other Research
Lyme Research Alliance
Lyme Disease Org
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