Lyme symptom index = 2
The day started out with a very frustrating statement "there is no Lyme in NC" but turned out very lucky. Who came up with the asinine statement that "there is no Lyme in NC". I may live in NC but I travel all over the US every year (like most Americans). Every time I have a meeting in New York I make special effort to stay over an extra day to do a one night hike and camp. Then I go back to NC. I've done this for 10 to 12 years. I've been bit by ticks I have seen the bulls eye rash. But I didn't seek treatment because I didn't know Lyme existed because medical professionals in NC weren't getting the word out about what to look for - because "there is no Lyme in NC". What a stupid statement.
But God is providing. I found out how to get a good Lyme test today from Clongen. Its gonna cost though $1032.00. Not only that today I found a Lyme Literate Doctor who will proscribe the treatment. I am not telling who. Last thing I need is my doc's license to practice medicine revoked in the middle of my treatment.
Thursday, April 30, 2009
Wednesday, April 29, 2009
Who came up with the 3 week treatment protocol for Lyme anyway? What a Goof.
Let me know if you see a difference in these treatment protocols? especially since Lyme is almost identical to Syphilis.
From the CDC website - Google CDC Lyme Testing:
These tests may be falsely negative in patients with early disease, but they are quite reliable for diagnosing later stages of disease...
and then treatment
Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics.
From the CDC website - Google CDC Syphilis Testing: testing for syphilis traditionally has consisted of initial screening with an inexpensive nontreponemal test, then retesting reactive specimens with a more specific, and more expensive, treponemal test. When both test results are reactive, they indicate present or past infection. However, for economic reasons, some high-volume clinical laboratories have begun using automated treponemal tests...If they have not been previously treated, patients with reactive results from treponemal tests and nonreactive results from nontreponemal tests should be treated for late latent syphilis.
and then treatment
No treatment for syphilis can be assumed to be effective 100 percent of the time. Assessing response to treatment may be difficult, and unequivocal criteria for cure have not been established. Patients should be reexamined both clinically and serologically 6 and 12 months after treatment.
A first-line treatment in adults: Penicillin G benzathine is the recommended treatment for primary, secondary, latent, and tertiary syphilis (with the exception of neurosyphilis and syphilitic eye disease).
Early syphilis - primary, secondary and early latent - 2 Year Duration
procaine penicillin 1gm I.M.I. for 10 days
benzathine penicillin 1.8gm I.M.I. stat dose
doxycycline 100mg orally t.d.s for 21 days
amoxycillin 3.0gm twice daily for 14 days (with 1gm probenocid orally daily)Latent syphilis (> 2 years duration)
procaine penicillin 1gm I.M.I. daily for 15 days
benzathine penicillin 1.8gm I.M.I. weekly for 3 injections. (If neurosyphilis excluded on CSF examination)
The TB skin test may be used to find out if you are infected with TB bacteria.
If you have recently been infected with TB bacteria, your TB skin test reaction may not be positive yet. You may need a second skin test 8 to 10 weeks
and then treatment:
The medicine usually taken for the treatment of latent TB infection is called isoniazid (INH). Taken for 6 to 9 months, INH kills the TB bacteria that are in the body.
NC Legal Action for Lyme
Let’s pass a law in NC that insurance companies may not take doctors before the Medical Board. Restrict it to individuals who have a grievance concerning treatment. Most of the good Lyme literate doctors in NC have been run out of town by insurance companies such as BCBS who take the doctors before the medical board of NC purely for financial reasons. Not one complaint by patients concerning Lyme treatment. Insurance companies don’t want to pay for the long term treatments for Chronic Lyme so they suspend the licenses of Lyme doctors in NC if they treat Lyme according to the ILAD guidelines for Lyme. The widely used IDSA guidelines are under serious examination by the CT attorney general as the IDSA panelist who wrote the guidelines where on the take from Glaxo and Big Insurance. But still ignorant NC doctors are using the IDSA guidelines and so is BCBS to deny patients good health care. Lets pass a law and get big insurance companies away for our Medical Board.
Tuesday, April 28, 2009
Brain Fog: strategies for dealing with memory loss and Lyme Disease
As it is with many chronic diseases - Chronic Lyme causes something called "brain fog". This is a polite way of saying loss of memory and recall. We call it 'brain fog' to keep our jobs and insurance providers call it that so that we don't qualify for disability. Everybody wins - sort of.
Like the early one set of Alzheimer's these periods of memory loss and recall difficulty come and go. One moment you are sharp as tack and by the end of the day you can't remember that your kids need a bath.
So here are the basics:
1. Live with some one who can look out for you. So that is an employed responsible adult, alcohol and drug free person who is not abusive. Dont turn your kids into your care taker. Don't get desperate just because your sick. Your better off alone than with some crack head who is really really sweet when they are not high.
2. Make a weekday schedule and keep it with you. Same for the weekends. Don't get frustrated because your weekend schedule is different from your week day schedule. Try to stay flexible.
3. Use a paper calendar that fits in your purse or back pack. Write in it. Sometimes a paper calendar is better than a blackberry. When brain fog sets in even something simple like telephone can be confounding.
4. Keep a small news reporters notebook with you. That way you can make notes about important conversations.
Like the early one set of Alzheimer's these periods of memory loss and recall difficulty come and go. One moment you are sharp as tack and by the end of the day you can't remember that your kids need a bath.
So here are the basics:
1. Live with some one who can look out for you. So that is an employed responsible adult, alcohol and drug free person who is not abusive. Dont turn your kids into your care taker. Don't get desperate just because your sick. Your better off alone than with some crack head who is really really sweet when they are not high.
2. Make a weekday schedule and keep it with you. Same for the weekends. Don't get frustrated because your weekend schedule is different from your week day schedule. Try to stay flexible.
3. Use a paper calendar that fits in your purse or back pack. Write in it. Sometimes a paper calendar is better than a blackberry. When brain fog sets in even something simple like telephone can be confounding.
4. Keep a small news reporters notebook with you. That way you can make notes about important conversations.
Mortality Rates for Lyme Disease
I asked the question: 'how many people die from Lyme?' I was told 'rarely if ever'. No - I asked 'how many' not 'how often'. The pathologist said - I don't know. So I will update this page as I discover more death certificates. Keep checking back.
Mortality Rates for Lyme Disease Topics Covered:
Adults
Children
Stillbirths
Miscarriages (Unknown)
Adults who died from Lyme Disease: 241 . I have only personally review 24 death certificates. Still working on the rest of the records. Once I have personally eye-balled the death certificates and I have reviewed the cause of death explanation. I will post the names here. As well as expanded data points such as age, year and location. Criteria is the cause of death must me Lyme Disease or Complications of Lyme Disease.
Children who died from Lyme Disease : 5 - All 5 have Lyme or Lyme complication as the cause of death.
Stillbirths from Lyme Disease : This number had to be deduce statistically cross referencing several sources.
Average 26,000 stillbirths each year. Using the UNC estimate that is 2600 still births due to any infection not just Lyme.
INFECTIOUS DISEASE CLINICS OF NORTH AMERICA
VOLUME 11 NUMBER 1 MARCH 1997
INFECTIONS IN OBSTETRICS:
LYME DISEASE DURING PREGNANCY
Helayne M. Silver, MD
The first case of perinatal transmission of presumed B. burgdorferi was
reported by Shirts et al in 1983.(8) The infant was born at 38 weeks to a
mother who had two episodes of high fever of unknown origin at 30 weeks and 32
weeks of gestation. The mother was treated initially with erythromycin and then
cefamandole. At delivery the neonate was pale, had hepatosplenomegaly,
petechiae, severe thrombocytopenia, and hyperbilirubinemia.
The first well-documented case of perinatal transmission of B. burgdorferi was
reported by Schlesinger et al in 1985. The infant was born at 35 weeks to a
mother with a clinical history consistent with erythema migrans in the first
trimester, which subsequently resolved without antibiotic therapy. The infant
had severe congenital cardiac defects resulting in neonatal death at 39 hours
of life. Postpartum, the mother developed arthritis, and serologic tests
revealed an IgG titer to B. burgdorferi of 1:128 by indirect
immunofluorescence.
Mortality Rates for Lyme Disease Topics Covered:
Adults
Children
Stillbirths
Miscarriages (Unknown)
Adults who died from Lyme Disease: 241 . I have only personally review 24 death certificates. Still working on the rest of the records. Once I have personally eye-balled the death certificates and I have reviewed the cause of death explanation. I will post the names here. As well as expanded data points such as age, year and location. Criteria is the cause of death must me Lyme Disease or Complications of Lyme Disease.
Children who died from Lyme Disease : 5 - All 5 have Lyme or Lyme complication as the cause of death.
Stillbirths from Lyme Disease : This number had to be deduce statistically cross referencing several sources.
Average 26,000 stillbirths each year. Using the UNC estimate that is 2600 still births due to any infection not just Lyme.
Department of Epidemiology, UNC Global School of Public Health, Chapel Hill, North Carolina, USA.
Infection may cause stillbirth by several mechanisms, including direct infection, placental damage, and severe maternal illness. Various organisms have been associated with stillbirth, including many bacteria, viruses, and protozoa. In developed countries, between 10% and 25% of stillbirths may be caused by an infection, whereas in developing countries, which have much higher stillbirth rates, the contribution of infection is much greater..
Actual neonatal and still birth deaths from Lyme:INFECTIOUS DISEASE CLINICS OF NORTH AMERICA
VOLUME 11 NUMBER 1 MARCH 1997
INFECTIONS IN OBSTETRICS:
LYME DISEASE DURING PREGNANCY
Helayne M. Silver, MD
The first case of perinatal transmission of presumed B. burgdorferi was
reported by Shirts et al in 1983.(8) The infant was born at 38 weeks to a
mother who had two episodes of high fever of unknown origin at 30 weeks and 32
weeks of gestation. The mother was treated initially with erythromycin and then
cefamandole. At delivery the neonate was pale, had hepatosplenomegaly,
petechiae, severe thrombocytopenia, and hyperbilirubinemia.
The first well-documented case of perinatal transmission of B. burgdorferi was
reported by Schlesinger et al in 1985. The infant was born at 35 weeks to a
mother with a clinical history consistent with erythema migrans in the first
trimester, which subsequently resolved without antibiotic therapy. The infant
had severe congenital cardiac defects resulting in neonatal death at 39 hours
of life. Postpartum, the mother developed arthritis, and serologic tests
revealed an IgG titer to B. burgdorferi of 1:128 by indirect
immunofluorescence.
The third reported case was from MacDonald et al of a full term stillbirth
delivered to a mother with a clinical history consistent with erythema migrans
in the first trimester that resolved without antibiotic therapy. (3) The infant
had a small ventricular septal defect (cardiac malformation) but no other
congenital anomalies. B. burgdorferi was found in the fetal liver, brain
In 1988, however, a disturbing case was reported by Weber et al of a poor
perinatal outcome in a woman diagnosed in the first trimester with erythema
migrans and treated with oral penicillin. (10) She delivered her infant by
vacuum extraction at term, following an uncomplicated pregnancy. The infant
developed respiratory distress at 23 hours of life and died within 30 minutes,
of respiratory failure. On autopsy there was cerebral edema and small
intracranial hemorrhages. Other than extreme congestion of the lungs, no other
abnormalities were seen. The diagnosis was respiratory failure secondary to
perinatal brain damage. Spirochetes were found in the brain and liver and were
confirmed by immunohistochemical techniques to be B. burgdorferi.
Other studies: Westchester County - New York
In 1995, a second report was published from the same authors comparing
serologic status of 2504 infants born to mothers in the Lyme endemic region
Lyme endemic region:
*Twenty-eight women in the endemic region reported a history of Lyme disease
*Six women in the endemic region reported Lyme disease during the index pregnancy, and all were treated with (some form of) antibiotic therapy. Among the six women who reported Lyme disease during pregnancy (treated women), one infant had hypospadias, and the rest had no
anomalies.
*Eight percent of infants from the endemic region had IgG positive cord blood
for B. burgdorferi versus. However, there was a significant
increase in cardiac malformations in infants from the endemic region
*malformations in infants 7.8%
Non Lyme endemic region:
*Compared to 2507 in Non Lyme endemic region
infants born to mothers living in a neighboring, nonendemic region. (11)
*One woman in the non endemic region reported a history of Lyme disease
*0.8% in infants from the nonendemic region had IgG positive cord blood
for B. burgdorferi None were IgM positive.
* malformations in infants from the nonendemic region, 8.9%
Among the twenty seropositive infants, one had cryptorchidism, but no other
anomolies were seen.
Other studies site (In 1986, a joint study from the Centers for Disease Control and Prevention and Yale University)
1 in 13 Lyme positive pregnancies resulted in death. 2 of the 13 result in sever abnormalities.
General Stats:
There are 560,000,00 women of childbearing age. In the US 6,240,000 pregnancies (1996 probably a little lower today). By statistical analysis not by death certificate confirmation there should be 13 infant deaths due to Lyme each year.
General StillBirths Stats: Average 26,000 stillbirths each year. Using the UNC estimate that is 2600 still births due to all infection not just Lyme.
Westchester County Demographics: (1998)
12827 births
Infant deaths 66 - 6.6 deaths due to infection less than .05% due to Lyme Disease
Chronic Lyme Disease Symptom Index = 4
Not a good day today. I sang "This is that day that the Lord has made" in the shower this morning it helped. It is not about if I only felt better then....Jesus is here now.
I was asked how I dealt with the pain of Lyme today. I deal with it through:
Tae Kwon Do and Pray- on good days
Tai Chi and Pray - on not so good days
Yogo and Pray - on bad days
Just listen- on terrible days
The doctor said this was not the best approach. That pain led to lack of rest that leads to more illness. I agree with him.
But there is something to be said for suffering. God promises that he will take our suffering and show the world Jesus. That sounds like a fair trade. I feel the 2006 IDSA Lyme Panel is being shown the corrective hand of God today and it took the suffering of alot of people to make that happen. I don't think God wants us to suffer unnecessarily though. God programmed suffering into our body. It is our que to us that something needs our attention. Not necessarily something to cover up or run from.
Not a good day today. I sang "This is that day that the Lord has made" in the shower this morning it helped. It is not about if I only felt better then....Jesus is here now.
I was asked how I dealt with the pain of Lyme today. I deal with it through:
Tae Kwon Do and Pray- on good days
Tai Chi and Pray - on not so good days
Yogo and Pray - on bad days
Just listen- on terrible days
The doctor said this was not the best approach. That pain led to lack of rest that leads to more illness. I agree with him.
But there is something to be said for suffering. God promises that he will take our suffering and show the world Jesus. That sounds like a fair trade. I feel the 2006 IDSA Lyme Panel is being shown the corrective hand of God today and it took the suffering of alot of people to make that happen. I don't think God wants us to suffer unnecessarily though. God programmed suffering into our body. It is our que to us that something needs our attention. Not necessarily something to cover up or run from.
Monday, April 27, 2009
So I got asked again at the Doctor if I remember the tick that bit me
So I got asked again at the doctor if I remember the tick that bit me. That is sort of like asking someone if they remember the person at the filling station getting gas next to them 4 weeks ago. Or saying do you remember a particularly itchy mosquito bite from 2 summers ago. Its a retarded question. But yes I understand it is one that must be asked.
Chronic Lyme or Post Lyme Syndrome
Lyme Symptom Index- End of Day = 4
So I got my MRI results and they look perfect. Not a hint of Parkinson's, MS or Alzheimer's. So I want a definitive Lyme Diagnosis. So my Neurologist is doing a spinal tap at the end of the month. I told him I want the spinal fluid not only tested for Lyme - I want it cultured for Lyme. Before I sign of for that crazy treatment that almost kills a person. I want to see some spirochete under a microscope. Period.
No Spirochete and that means the 21 day of Doxycicline worked! Then what that means is I have Post Lyme Syndrome. That is an autoimmune disorder where your body still thinks you have Lyme so it is still attacking your body trying to kill the Lyme that isnt there. Autoimmune disorders are not easy to treat but much easier to treat and far less expensive than Chronic Lyme Disease Treatment.
I will let you know how it goes. Wish me luck.
So I got my MRI results and they look perfect. Not a hint of Parkinson's, MS or Alzheimer's. So I want a definitive Lyme Diagnosis. So my Neurologist is doing a spinal tap at the end of the month. I told him I want the spinal fluid not only tested for Lyme - I want it cultured for Lyme. Before I sign of for that crazy treatment that almost kills a person. I want to see some spirochete under a microscope. Period.
No Spirochete and that means the 21 day of Doxycicline worked! Then what that means is I have Post Lyme Syndrome. That is an autoimmune disorder where your body still thinks you have Lyme so it is still attacking your body trying to kill the Lyme that isnt there. Autoimmune disorders are not easy to treat but much easier to treat and far less expensive than Chronic Lyme Disease Treatment.
I will let you know how it goes. Wish me luck.
Lyme disease and Pain Killers
I was speaking to Friend of mine who is a registered nurse who is getting out of nursing after 12 years. She spends 50% of her time at doctors offices and 50% of her time in the ER working. I asked her why is she leaving such a need profession? After all my mother in law just died and it was the nurses that eased her suffering a cared for her day in and day out. I feel so indebted to nurses.
She said, "everyday it is one drug addict after another working you for a prescription for pain killers - oxycodone or something like that".
Now that discussion with her dramatically changed the way I speak to my doctors about Lyme disease. I start off the conversations about pain with - I am in terrible pain but I don't want pain killers. I want the problem fixed. I control my pain through Tai Chi and Tae Kwon Do. I don't drink or do illegal drugs and don't plan to start with legal drugs. Are we clear?
I recommend the same to every one who has Lyme. Dont get into the pain killers - dont kill the pain kill the disease.
She said, "everyday it is one drug addict after another working you for a prescription for pain killers - oxycodone or something like that".
Now that discussion with her dramatically changed the way I speak to my doctors about Lyme disease. I start off the conversations about pain with - I am in terrible pain but I don't want pain killers. I want the problem fixed. I control my pain through Tai Chi and Tae Kwon Do. I don't drink or do illegal drugs and don't plan to start with legal drugs. Are we clear?
I recommend the same to every one who has Lyme. Dont get into the pain killers - dont kill the pain kill the disease.
ok that is enough of the IDSA scrutiny for one day
Todays Lyme Symptom Index = 2 to 3
I am moving on to other issues from now. So on at the top of each post I am going to provide a Lyme Pain Index that I have been working on.
Here is the scale
Lyme Symptom Index: 1= no fatigue, no pain, no stomach issues, no pulmonary issues, no neurological issues. Happy as a clam.
Lyme Symptom Index: 2= a little tired as if I stayed up too late, general aches and pains of life. Little acid reflux. Irregular heart beat that doesn't interfere with exercise and slightly off memory on little thing but normal cognitive function.
Lyme Symptom Index: 3= Very tired but functioning at work. Aches and pains like coming down with a cold. Diarrhea and general digestive issues. Irregular heart beat that interferes with activities like climbing the stairs. General malaise, small memory problems
Lyme Symptom Index: 4= Tired and having difficult keeping up at work. Joint pain that makes sitting a walking difficult. Trouble eating and retaining calories due to poor appetite and diarrhea. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Problems with recall and memory but able to cover it up.
Lyme Symptom Index: 5= Tired unable to make it to work on time. Going home at lunch to sleep. total exhaustion by the end of the day and unable to care for children or husband when I get home. Not able to work effectively. Constant discomfort and pain with occasional pain that causes all activities to stop. Trouble eating and retaining calories due to poor appetite and diarrhea. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Colleagues notice an inability to recall facts and figures related to work. Forgetting meetings and appointments.
Lyme Symptom Index: 6=Tired unable to make it to work on time. Going home at lunch to sleep. total exhaustion by the end of the day and unable to care for children or husband when I get home. Not able to work effectively. Frequent pain that causes all activities to stop. Limited eating and retaining calories due to poor appetite and diarrhea. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Headache and light sensitivity. Colleagues notice an inability to recall facts and figures related to work. Forgetting meetings and appointments. Forgetting important thing like meeting with my boss. Standing up giving a presentation and suddenly no being able to remember why I am there and not able to resume the meeting.
Lyme Symptom Index: 7=Tired unable to make it to work on time. Work half day. Unable to do much accept sit at my desk. Total exhaustion by the end of the day and unable to care for children or husband when I get home. Not able to perform duties at work and this is noticed by boss and colleagues. Intense Pain fro 50% of the day that forces me lay in bed. Unable to eat anything but liquids bowel irritation. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Headache and light sensitivity. Slurred speech. Colleagues notice an inability to recall anything in general. Cancel all meetings and appointments. Avoid my boss. Standing in the parking lot wonder what kind of car I drive.
Lyme Symptom Index: 8= Call into work. Unable to do anything but sit up. Total exhaustion by the end of the day and unable to care for children or husband when I get home. Intense Pain for 75% of the day that forces me lay in bed. Unable to eat anything but liquids bowel irritation. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Headache and light sensitivity. Slurred speech and tremors of the hands and feet. Unable to remember accept what is happening at the moment.
Lyme Symptom Index: 9= Call into work. Unable to sit up for long. Unable to care for myself. Intense Pain for 100% of the day that forces me lay in bed. Pain feels similar to early labor. Not enough to cry out but enough to take all of your strength and attention. Unable to eat anything but liquids bowel irritation. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Headache and light sensitivity. Slurred speech and tremors of the hands and feet. Fever and delirium. Memory and recall is only moment to moment.
Lyme Symptom Index: 10=Call into work. Unable to sit up . Unable to care for myself. Intense Pain for 100% of the day that forces me lay in bed. Pain feels similar to advanced labor. Enough to cry takes all of your strength and attention. Like being tortured. Unable to eat anything. Irregular heart beat with intense pulmonary pressure in my neck and head. Splitting Headache and light sensitivity. Slurred speech and tremors of the arms, hands and legs feet. Fever and delirium. Ability to communicate is limited. Suicidal.
I am moving on to other issues from now. So on at the top of each post I am going to provide a Lyme Pain Index that I have been working on.
Here is the scale
Lyme Symptom Index: 1= no fatigue, no pain, no stomach issues, no pulmonary issues, no neurological issues. Happy as a clam.
Lyme Symptom Index: 2= a little tired as if I stayed up too late, general aches and pains of life. Little acid reflux. Irregular heart beat that doesn't interfere with exercise and slightly off memory on little thing but normal cognitive function.
Lyme Symptom Index: 3= Very tired but functioning at work. Aches and pains like coming down with a cold. Diarrhea and general digestive issues. Irregular heart beat that interferes with activities like climbing the stairs. General malaise, small memory problems
Lyme Symptom Index: 4= Tired and having difficult keeping up at work. Joint pain that makes sitting a walking difficult. Trouble eating and retaining calories due to poor appetite and diarrhea. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Problems with recall and memory but able to cover it up.
Lyme Symptom Index: 5= Tired unable to make it to work on time. Going home at lunch to sleep. total exhaustion by the end of the day and unable to care for children or husband when I get home. Not able to work effectively. Constant discomfort and pain with occasional pain that causes all activities to stop. Trouble eating and retaining calories due to poor appetite and diarrhea. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Colleagues notice an inability to recall facts and figures related to work. Forgetting meetings and appointments.
Lyme Symptom Index: 6=Tired unable to make it to work on time. Going home at lunch to sleep. total exhaustion by the end of the day and unable to care for children or husband when I get home. Not able to work effectively. Frequent pain that causes all activities to stop. Limited eating and retaining calories due to poor appetite and diarrhea. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Headache and light sensitivity. Colleagues notice an inability to recall facts and figures related to work. Forgetting meetings and appointments. Forgetting important thing like meeting with my boss. Standing up giving a presentation and suddenly no being able to remember why I am there and not able to resume the meeting.
Lyme Symptom Index: 7=Tired unable to make it to work on time. Work half day. Unable to do much accept sit at my desk. Total exhaustion by the end of the day and unable to care for children or husband when I get home. Not able to perform duties at work and this is noticed by boss and colleagues. Intense Pain fro 50% of the day that forces me lay in bed. Unable to eat anything but liquids bowel irritation. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Headache and light sensitivity. Slurred speech. Colleagues notice an inability to recall anything in general. Cancel all meetings and appointments. Avoid my boss. Standing in the parking lot wonder what kind of car I drive.
Lyme Symptom Index: 8= Call into work. Unable to do anything but sit up. Total exhaustion by the end of the day and unable to care for children or husband when I get home. Intense Pain for 75% of the day that forces me lay in bed. Unable to eat anything but liquids bowel irritation. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Headache and light sensitivity. Slurred speech and tremors of the hands and feet. Unable to remember accept what is happening at the moment.
Lyme Symptom Index: 9= Call into work. Unable to sit up for long. Unable to care for myself. Intense Pain for 100% of the day that forces me lay in bed. Pain feels similar to early labor. Not enough to cry out but enough to take all of your strength and attention. Unable to eat anything but liquids bowel irritation. Irregular heart beat with bout of intense pulmonary pressure in my neck and head. Headache and light sensitivity. Slurred speech and tremors of the hands and feet. Fever and delirium. Memory and recall is only moment to moment.
Lyme Symptom Index: 10=Call into work. Unable to sit up . Unable to care for myself. Intense Pain for 100% of the day that forces me lay in bed. Pain feels similar to advanced labor. Enough to cry takes all of your strength and attention. Like being tortured. Unable to eat anything. Irregular heart beat with intense pulmonary pressure in my neck and head. Splitting Headache and light sensitivity. Slurred speech and tremors of the arms, hands and legs feet. Fever and delirium. Ability to communicate is limited. Suicidal.
Carol Baker Lyme Disease Panel call for information
Anyone who can tie Carol Baker to Glaxo or BioChem - let me know. It appears she has a huge interest in vaccines particularly meningococcal vaccine and that is not bad. But lets make sure she is not in bed with Pharma like the last round of ISDA guideline goofs.
Note:
NIAID was not directly involved in the design and implementation of LymeRix (Glaxo Smiht Klein and Beecham) vaccine trials; however, patents for cloning the genes used for the expression of recombinant OspA, as well as knowledge of the role of antibodies against OspA in the development of protective immunity, were derived from basic research grants funded by NIAID.
Note: Carol J. Baker NIAID Investigator - Recommendations pending for meningococcal vaccine
Note: GlaxoSmithKline Files Meningococcal Conjugate Vaccine Apr 2007
Note: Carol J. Baker, MD, Moderator President, National Foundation for Infectious Diseases
Note: Under the direction of Carol J. Baker, M.D., an NIAID-funded investigator at Baylor College of Medicine in Houston, 100 women of child-bearing age received either the Group B streptococcus conjugate vaccine
Note: BioChem Pharma Inc., Laval, QC, is receiving up to $80 million from the federal government to help the company develop a new generation of vaccines. BioChem Pharma currently has meningococcal vaccine in the first phase of clinical trials. It has been created to protect against infection by Neisseria meingitidis, one of the three common causes of meningitis. Other targets for recombinant protein vaccines are Group B streptococcus and Streptococcus pneumonide.
BioChem Pharma is well-known for the anti-AIDS vaccine it invented, which is sold globally by Glaxo Wellcome creator of the LYMErix vaccine.
William A. Charini - NIAID funded
"We thank William A. Charini and Carol A. Lord for MHC class I typing of the monkeys used in this study, Lisa Franz for assistance in preparation of this manuscript, Casey Wingfield for SIV RNA analysis, and Gudrun Großschupff and Birgit Raschdorf for performing in situ hybridizations. Simian Immunodeficiency Virus (SIV)-Specific CTL Are Present in Large Numbers in Livers of SIV-Infected Rhesus Monkeys." Research used for AIDs vaccine. Can anyone tie his research to Glaxo or BioChem Pharma.
Gerald Medoff big on the efficacy of vaccines. I like this persons research. Its the vaccine thing that keeps popping up that is worrisome. Vaccine work is to be commended but why all the vaccine experts and Biochemistry people on this Lyme IDSA panel?
Note:
NIAID was not directly involved in the design and implementation of LymeRix (Glaxo Smiht Klein and Beecham) vaccine trials; however, patents for cloning the genes used for the expression of recombinant OspA, as well as knowledge of the role of antibodies against OspA in the development of protective immunity, were derived from basic research grants funded by NIAID.
Note: Carol J. Baker NIAID Investigator - Recommendations pending for meningococcal vaccine
Note: GlaxoSmithKline Files Meningococcal Conjugate Vaccine Apr 2007
Note: Carol J. Baker, MD, Moderator President, National Foundation for Infectious Diseases
Note: Under the direction of Carol J. Baker, M.D., an NIAID-funded investigator at Baylor College of Medicine in Houston, 100 women of child-bearing age received either the Group B streptococcus conjugate vaccine
Note: BioChem Pharma Inc., Laval, QC, is receiving up to $80 million from the federal government to help the company develop a new generation of vaccines. BioChem Pharma currently has meningococcal vaccine in the first phase of clinical trials. It has been created to protect against infection by Neisseria meingitidis, one of the three common causes of meningitis. Other targets for recombinant protein vaccines are Group B streptococcus and Streptococcus pneumonide.
BioChem Pharma is well-known for the anti-AIDS vaccine it invented, which is sold globally by Glaxo Wellcome creator of the LYMErix vaccine.
William A. Charini - NIAID funded
"We thank William A. Charini and Carol A. Lord for MHC class I typing of the monkeys used in this study, Lisa Franz for assistance in preparation of this manuscript, Casey Wingfield for SIV RNA analysis, and Gudrun Großschupff and Birgit Raschdorf for performing in situ hybridizations. Simian Immunodeficiency Virus (SIV)-Specific CTL Are Present in Large Numbers in Livers of SIV-Infected Rhesus Monkeys." Research used for AIDs vaccine. Can anyone tie his research to Glaxo or BioChem Pharma.
Gerald Medoff big on the efficacy of vaccines. I like this persons research. Its the vaccine thing that keeps popping up that is worrisome. Vaccine work is to be commended but why all the vaccine experts and Biochemistry people on this Lyme IDSA panel?
These are the 2006 IDSA Lyme Guideline Panelist who also worked on the LYMErix vaccine from Glaxo Smith Klein Beecham
These are the 2006 IDSA Lyme Guideline Panelist who also worked on the LYMErix vaccine from Glaxo Smith Klein Beecham. Note the LYMErix write up from the FDA below. It is titled the New Hope for Diminishing 'Great Masquerader' ability to hide and fool the . Because of Lymes ability to hide in the body and fool the immune system. They start out with anecdotal data which IDSA says in 2006 is inconsequential. They insist that a person must be vaccinated 3 time a year to combat Lymesimmune system. They also have no idea how long the vaccine is effective because of Lyme's ability to hide and fool the immune system. Wait I thought IDSA said you just needed 21 days of antibiotics because the bacteria that causes Lyme is so easy to kill. They even have a paragraph in here called "Telltale Rash Not the Whole Story". According to the IDSA it is the entire story. They sure changed their tune when Glaxo Smith Klein Beecham pulled the vaccine from the market.
Durland Fish IDSA 2006 Citation
Durland Fish 2006 Panelists ISDA
Durland Fish LYMErix
Robert B Nadelman IDSA 2006 Citation
Robert B Nadelman LYMErix
Allen C Steere 2006 Panelists ISDA
Allen C Steere IDSA 2006 Citation
Allen C Steere LYMErix
Sam R Telford IDSA 2006 Citation
Sam R Telford LYMErix
Gary P Wormser 2006 Panelists IDSA
Gary P Wormser IDSA 2006 Citation
Gary P Wormser LYMErix
Durland Fish IDSA 2006 Citation
Durland Fish 2006 Panelists ISDA
Durland Fish LYMErix
Robert B Nadelman IDSA 2006 Citation
Robert B Nadelman LYMErix
Allen C Steere 2006 Panelists ISDA
Allen C Steere IDSA 2006 Citation
Allen C Steere LYMErix
Sam R Telford IDSA 2006 Citation
Sam R Telford LYMErix
Gary P Wormser 2006 Panelists IDSA
Gary P Wormser IDSA 2006 Citation
Gary P Wormser LYMErix
| U.S. Food and Drug Administration | The manufacturer of the vaccine LYMErix discontinued distribution in the United States in 2001. This article is no longer being updated. For current information on Lyme disease and treatment, see the CDC's Lyme page or the other references in "For More Information" at the end of this article. |
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New Vaccine Targets Lyme Disease
New Hope for Diminishing 'Great Masquerader'
by Carol Lewis
Don C.'s hands hurt for months. He kept getting sore throats. When he turned his head to either side, it was painful to move it back. He suffered from a lack of concentration, memory loss, aching joints, and depression. Yet, the then-41-year-old New Jersey native just assumed it was all part of getting older.
As symptoms worsened, Don became concerned that he was suffering from far more than the effects of middle age. A diagnostic questionnaire and extensive testing eventually confirmed that he had Lyme disease.
In December 1998, the Food and Drug Administration licensed the first vaccine to help prevent Lyme disease, a bacterial infection transmitted by tick bites. LYMErix, distributed by SmithKline Beecham Pharmaceuticals, Philadelphia, is an unusual vaccine. Like most vaccines, it stimulates the human immune system to produce antibodies, in this case directed against Borrelia burgdorferi (B. burgdorferi), the bacterium that causes Lyme disease. But unlike typical antibodies that fight the bacteria in a person's body, animal experiments suggest that when a tick bites a vaccinated person, the vaccine-induced antibodies enter the tick and kill the bacteria there.
FDA emphasizes that the vaccine, however, is not 100 percent effective, and should not be considered a substitute for other standard preventive measures against infection, including wearing protective clothing, using tick repellent, and removing attached ticks (see accompanying articles).
"The vaccine's effectiveness depends on people receiving three doses over a one-year period," says Karen Elkins, Ph.D., an immunologist with FDA's Office of Vaccines, Research and Review. The initial dose is followed by a second dose one month later, and a third dose 12 months after the first.
The time of year the vaccination is given is important as well, Elkins stresses. Vaccine administration should be timed so that the second dose and the third dose are given several weeks before the beginning of the B. burgdorferi transmission season, usually April in the Northeastern United States.
FDA has approved the vaccine for people 15 to 70 years old who live or work in grassy or wooded areas, where infected ticks tend to thrive. But, although LYMErix may provide protection for most people, the vaccine does not prevent all cases of Lyme disease. It is also not known how long protection against Lyme disease lasts after vaccination.
The national Centers for Disease Control and Prevention says that people of all ages are susceptible to the infection, but that the highest reported rates of Lyme disease are in children 2 to 15 years old, and adults aged 30 to 55.
The Bite of a Tiny Tick
The most common carrier of Lyme disease in the United States is the deer tick (so named for its dependency on deer to reach the adult stage of its complex, two-year life cycle), or black-legged tick. The Western black-legged deer tick also transmits Lyme disease along the coasts of northern California, Oregon and Washington.
Ticks become infected with the Lyme disease bacteria when they feed on the blood of an infected animal--most notably, the white-footed mouse, white-tailed deer, other mammals, and birds--a method necessary for them to progress to each of three life-cycle stages.
According to CDC, ticks are usually in the nymph stage (between larva and adult) when they transmit Lyme disease to humans. Approximately the size of a poppy seed, the nymphs are most active between May and July. The spiral-shaped Lyme-causing bacterium, B. burgdorferi, enters the skin at the site of a bite and migrates until it penetrates the bloodstream. It usually takes at least 36 hours following a tick bite for the bacterium to be transmitted, so early removal of attached ticks is very important.
Although in theory Lyme disease could spread through blood transfusions or other contact with infected blood or urine, CDC says no such transmission has been documented. And there is no evidence that a person can get Lyme disease from the air, food or water, through sexual contact, or directly from wild or domestic animals.
While at least one definitive case of Lyme disease acquired by either a deerfly or horsefly was documented in The New England Journal of Medicine in 1990, CDC says that no convincing evidence exists that the disease can be transmitted by insects such as mosquitoes, flies or fleas.
In rare cases, CDC also says, Lyme disease acquired during pregnancy may lead to infection of the fetus, but the effects of such transmission on the fetus remain unclear.
Telltale Rash Not the Whole Story
Early-stage Lyme disease is usually marked by a telltale skin rash called erythema migrans, which appears three days to one month after the tick bites. It starts as a small red spot at the site of the bite. As it enlarges, the center of the rash may clear, resulting in a bull's-eye appearance. Common sites for the rash are the thigh, groin, trunk, and armpits. CDC estimates that 85 percent of people with Lyme disease get the characteristic rash.
The rash is often accompanied by flu-like symptoms, including fever, fatigue and muscular pain. Other early signs can include secondary skin lesions and facial paralysis.
Although early Lyme disease almost always responds to appropriate antibiotic therapy, if untreated or inadequately treated, the condition can progress weeks, months or years after the tick bite to late Lyme disease, which is characterized by distinctive arthritic, neurologic and cardiac problems.
Although a tick bite is an important clue for diagnosis, many people cannot recall having been bitten because the tick is so tiny and its bite is relatively painless. (The picture at right shows a normal size thumb with a deer tick nymph on it.) Therefore, NIH advises physicians to base their diagnosis not only on the history of a tick bite, but also the patient's symptoms and a thorough ruling out of other diseases that may have triggered those symptoms.
The Importance of Proper Diagnosis
FDA's concern about the potential for misdiagnosing Lyme disease is based on results from commonly marketed blood tests used for detecting antibodies to the organism that causes infection. Antibodies in the patient's blood indicate that the body's immune system has detected invaders, but some tests cannot tell if those invaders are the Lyme disease bacteria. The test most often used to detect antibodies is called an enzyme-linked immunosorbent assay (ELISA) technique.
In addition, in February, FDA cleared a new blood test for Lyme disease that can be used in a doctor's office. PreVue B. burgdorferi Antibody Detection Assay, made by Chembio Diagnostic Systems, Medford, N.Y., is intended, like the ELISA test, to be used as the first step in testing people suspected of having Lyme disease. The PreVue test searches for antigens made by the B. burgdorferi bacterium that is responsible for the infection.
Unlike ELISA, which must be performed in a lab, PreVue provides results in one hour at the doctor's office. Understanding the limits of such testing, however, is important in diagnosing and treating the disease, says Sharon Hansen, Ph.D., a microbiologist with FDA's Center for Devices and Radiological Health. She advises that the tests be used only to support a clinical diagnosis of the disease, as in Don C's case, and not solely for making initial diagnostic or treatment decisions.
"In early diagnosis of Lyme disease these tests should not be used to rule in or rule out the infection," she advises, "especially in the absence of a rash." She explains that a positive test result does not conclusively indicate infection, and that people with active Lyme disease may get a negative result. She adds that when the ELISA test is positive, it must be followed and confirmed by a supplemental, second-step test known as the Western blot. The ability of Western blot to detect antibodies specific for B. burgdorferi, she concludes, reduces the number of false positives obtained with ELISA.
Like ELISA, positive results from PreVue also must be confirmed with a Western blot test done by a laboratory.
Treatment and Prevention
Most Lyme disease patients can be successfully treated with standard antibiotics. FDA approved Ceftin (cefuroxime axetil) Dec. 19, 1996, for the treatment of early Lyme disease. Recommended regimens of oral antibiotics can speed the healing of the rash, and can help prevent subsequent symptoms such as arthritis or neurological problems.
Hansen says that patients treated in the early stages with antibiotics usually recover rapidly and completely. Patients treated in later stages of the disease also may respond well to antibiotics, but in some cases, symptoms of persisting infection or inflammation may continue or recur, causing permanent damage.
"Lyme disease is a great masquerader," she says. "The bacteria may lay dormant and the symptoms disappear, but as the bacteria becomes active again, the symptoms will reappear." Hanson adds, "Even when the bacteria is eradicated from the body, the damage that has already been done may persist."
FDA, CDC, and the National Institutes of Health all agree that education is the most important part of Lyme disease prevention. Research has indicated that early removal of a tick can ward off much of the danger, but diagnosing the disease and treating infection remain difficult.
"I can't emphasize strongly enough the importance of finding a doctor who is experienced in recognizing this infection," adds Don C. "As in my case, where Lyme disease is concerned, time is of the essence."
Carol Lewis is a staff writer for FDA Consumer.
Lyme History 101
The National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, says a skin rash similar to that of Lyme disease was recognized in Europe and was described in medical literature dating back to the turn of the century. Researchers believe that the disease may have spread from Europe to the United States in the early 1900s. But it wasn't until the influx of suburban developments into rural areas where deer ticks are common, coupled with the exploding deer population, that the disease became prevalent, according to NIAID.
Lyme disease was first recognized in the United States in 1975 when a cluster of rheumatoid arthritis cases occurred in the town of Lyme, Conn. The victims were mostly children, and the outbreak began with rashes, headaches, and joint pains during the summer months--the height of tick season.
By 1994, 48 states and the District of Columbia had reported Lyme disease cases, although most were concentrated mainly in the coastal Northeast, the Mid-Atlantic states, Wisconsin and Minnesota, and northern California. Three years later, the national Centers for Disease Control and Prevention says, more cases of Lyme disease were reported than the combined total of cases reported for measles, mumps, rubella, whooping cough, cholera, tetanus, diphtheria, meningitis, and a host of other lesser known conditions.
But CDC also estimates that thousands of Lyme disease cases go undiagnosed, untreated and unreported, due in large part to the disease's uncanny ability to mimic other illnesses.
--C.L.
Preventing Infection
Most cases of Lyme disease occur in the spring and summer months when ticks in the nymph stage are feeding and people generally spend more time outdoors, often with more skin exposed. To minimize the risk of contracting Lyme disease, the national Centers for Disease Control and Prevention recommends the following precautions:
- Avoid areas where deer ticks live, such as wooded, brushy, and grassy places (including lawns and gardens), especially from May through August.
- Wear long pants and long-sleeved shirts when frequenting these areas to minimize skin exposure.
- Tuck pant legs into socks or boots to form a barrier to tick attachment.
- Tape the area where pants and socks meet so that ticks cannot crawl underneath.
- Wear light-colored clothing so that ticks can be spotted more easily.
- Spray insect repellent that contains DEET on exposed skin, other than the face, or treat clothing with permethrin, which kills ticks on contact. Use sparingly on children and avoid use on their faces and hands.
- Walk in the center of trails to avoid overhanging grass or brush.
- Shower after all outdoor activities. If a tick is still wandering, it may wash off.
- Check periodically for ticks if you've been in and around brushy areas or working in a garden, looking particularly for what may appear to be a speck of dirt.
If you do find a tick, be sure to remove it correctly and dispose of it properly.
--C.L.
Protecting Fido and Kitty
Household pets can get Lyme disease, too. Typical symptoms in animals include joint soreness and lameness, fever, and loss of appetite.
Currently three Lyme disease vaccines are available for dogs--LymeVax, Galaxy Lyme, and Canine Recombinant Lyme. Larry Elskin with the U.S. Department of Agriculture's Center for Biologics says that healthy dogs can be vaccinated when they are 9 weeks or older. (There is no vaccine available for cats.)
The American dog tick, which is more commonly found on pets, is much larger than the deer tick and, the national Centers for Disease Control and Prevention says, is not known to carry Lyme disease. Checking pets for all types of ticks before letting them enter the home reduces the risk of infection for both pet and owner.
--C.L.
For More Information
For more information on Lyme disease, contact any of the following organizations:
National Centers for Disease Control and Prevention
Division of Vector-Borne Infectious Diseases
Box 2087
Fort Collins, CO 80522
(970) 221-6400
www.cdc.gov/ncidod/dvbid/lyme/
National Institutes of Health
National Institute of Allergy and Infectious Diseases
31 Center Drive, MSC 2520
Room 7A-50
Bethesda, MD 20891
medlineplus.nlm.nih.gov/medlineplus/lymedisease.html
American Lyme Disease Foundation, Inc.
Mill Pond Offices
293 Route 100
Somers, NY 10589
(914) 277-6970
www.aldf.com
Questions concerning the editorial content of FDA Consumer should be directed to FDA's Office of Public Affairs.
Table of Contents | How to Subscribe | Back Issues | FDA Home Page
Just to give you an idea of how difficult it is to get good information from the IDSA
No there is no reason to get hysterical about Swine Flu. But following the information in the news today may help you understand how frustrated Lyme Disease survivors are with the under reporting of Infectious Disease. - you expect poor reporting on a sudden out break but you expect great report on the fastest growing infectious disease in the US - Yeah Lyme.
Examples of poor reporting Swine flu April 26 2009
Account 1: The WHO (World Health Organization)
Also as of 26 April - the Government of Mexico has reported 18 laboratory confirmed cases of swine influenza A/H1N1. Investigation is continuing to clarify the spread and severity of the disease in Mexico. Suspect clinical cases have been reported in 19 of the country's 32 states.
Account 2:
As of April 26, 2009 - Mexico Health Secretary Jose Angel Cordova said late Sunday that the number of suspected swine flu cases in Mexico had climbed to 1,614, including 103 deaths
See a discrepancy here?
Account 3: CDC - April 26 2009 - The US (Laboratory Confirmed Cases)
California - 7 cases
Kansas - 2 cases
New York City - 8 cases
Ohio - 1 case
Texas - 2 cases
TOTAL COUNT 20 cases
The IDSA defers to the CDC but says; In Mexico more than 800 cases of a respiratory illness in 3 clusters, including 61 deaths
Account 4: The Health Department of New YorkApril 26 2009 - The Health Department of New York is investigating a cluster of respiratory illness in a non-public school in New York City and has determined that at least 8 students have probable human swine influenza. More than 100 of the school’s students were absent several days this week due to fever, sore throats and other flu-like symptoms...http://www.nyc.gov/html/doh/html/pr2009/pr015-09.shtml
See a discrepancy here?
See you have to know to ask about 'laboratory confirmed cases' versus 'non-laboratory confirmed cases'.
Account 5: FDA - April 26, 2009 No information on Website: But the HHS says "Specifically, today’s Public Health Emergency declaration will enable the FDA to review and issue emergency use authorizations (EUAs) for the use of certain laboratory tests to help detect the newly discovered strain of influenza and for the emergency use of certain antivirals."
Account 6: April 26, 2009 HHS Health and Human Services
The Department of Health and Human Services today issued a nationwide public health emergency declaration in response to recent human infections with a newly discovered swine influenza A (swine flu) virus.
Account 7: April 26, 2009
National Institutes of Health
Department of Health and Human Services
nothing
Account 8:
NIAID - Nothing but a nifty article on how the virulent flue strains don't cause death but it is actually the body's over reaction to the flu virus. Interesting if you are interested in autoimmune disorder.
TipDCs—The Necessary Evil of Lethal Influenza Virus Infection.
Account 9: NIH - Still talking about Malaria Day. Probably a bigger issue anyway.
Examples of poor reporting Swine flu April 26 2009
Account 1: The WHO (World Health Organization)
Also as of 26 April - the Government of Mexico has reported 18 laboratory confirmed cases of swine influenza A/H1N1. Investigation is continuing to clarify the spread and severity of the disease in Mexico. Suspect clinical cases have been reported in 19 of the country's 32 states.
Account 2:
As of April 26, 2009 - Mexico Health Secretary Jose Angel Cordova said late Sunday that the number of suspected swine flu cases in Mexico had climbed to 1,614, including 103 deaths
See a discrepancy here?
Account 3: CDC - April 26 2009 - The US (Laboratory Confirmed Cases)
California - 7 cases
Kansas - 2 cases
New York City - 8 cases
Ohio - 1 case
Texas - 2 cases
TOTAL COUNT 20 cases
The IDSA defers to the CDC but says; In Mexico more than 800 cases of a respiratory illness in 3 clusters, including 61 deaths
Account 4: The Health Department of New YorkApril 26 2009 - The Health Department of New York is investigating a cluster of respiratory illness in a non-public school in New York City and has determined that at least 8 students have probable human swine influenza. More than 100 of the school’s students were absent several days this week due to fever, sore throats and other flu-like symptoms...http://www.nyc.gov/html/doh/html/pr2009/pr015-09.shtml
See a discrepancy here?
See you have to know to ask about 'laboratory confirmed cases' versus 'non-laboratory confirmed cases'.
Account 5: FDA - April 26, 2009 No information on Website: But the HHS says "Specifically, today’s Public Health Emergency declaration will enable the FDA to review and issue emergency use authorizations (EUAs) for the use of certain laboratory tests to help detect the newly discovered strain of influenza and for the emergency use of certain antivirals."
Account 6: April 26, 2009 HHS Health and Human Services
The Department of Health and Human Services today issued a nationwide public health emergency declaration in response to recent human infections with a newly discovered swine influenza A (swine flu) virus.
Account 7: April 26, 2009
National Institutes of Health
Department of Health and Human Services
nothing
Account 8:
NIAID - Nothing but a nifty article on how the virulent flue strains don't cause death but it is actually the body's over reaction to the flu virus. Interesting if you are interested in autoimmune disorder.
TipDCs—The Necessary Evil of Lethal Influenza Virus Infection.
Account 9: NIH - Still talking about Malaria Day. Probably a bigger issue anyway.
What is a vector borne infectious disease
A vector is an organism, such as an insect, that transmits a pathogen, such as a bacterium.
Contrary to popular belief people are not considered an organism in this definition.
Contrary to popular belief people are not considered an organism in this definition.
Sunday, April 26, 2009
The ISDA 2006 Panelists On Lyme Disease, The New Panelists, ILAD and People to Keep and Eye On
Old Guidelines
http://www.aan.com/press/index.cfm?fuseaction=release.view&release=514
AAN Colusion http://www.aan.com/press/index.cfm?fuseaction=release.view&release=514
New Panelist http://www.idsociety.org/Content.aspx?id=13310
First Name … LastName …Group … Future Watch
Maria … Aguero … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Maja … Arnež … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
D … Arnold … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Paul G … Auwaerter… IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Gregory… Bach … The ILADS Working Group
Richard … Bachur … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Rendi M … Bacon … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Carol J … Baker … IDSA New Panelists
Johan S… Bakken… 2006 Panelists IDSA
Johan S… Bakken… IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Philip S … Barie … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Sabra … Bellovin… The ILADS Working Group
Andrea L… Bernardino … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Kenneth… Bock … The ILADS Working Group
Steven … Bock … The ILADS Working Group
Linda … Bockenstedt … 2006 Panelists IDSA
Linda K… Bockenstedt …IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
William … Bowie … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Robert … Bransfield… The ILADS Working Group
Dustin … Brisson … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Howard A… Brody … IDSA New Panelists ombudsman
Joseph … Burrascano … The ILADS Working Group
Steven … Buyske … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
C … Bvunker … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Daniel … Cameron … The ILADS Working Group
J … Cangelosi … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
S … Carlsson… IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
William A… Charini … IDSA New Panelists
Gilliam B… Conley … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Kristin M… Corapi … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
K… Cornell … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Nitin … Damle … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Raymond J… Dattwyler… 2006 Panelists IDSA
Raymond J… Dattwyler… IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Abhay … Dhand … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Constance … Dickey … The ILADS Working Group
Sam T … Donta … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
none … Donta … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Alan … Dumoff … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Paul H … Duray … IDSA New Panelists
E… Edmonds … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Monica E … Embers … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Javier I … Escobar… IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Durland … Fish… 2006 Panelists IDSA
Durland… Fish… IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Diana… Florescu… IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
N… Francis … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Andrea … Gaito … The ILADS Working Group
Michael … Gara … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Martin… Glatz … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Lisa J… Glickstein… IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Andrew… Glyptis … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
H… Granlund… IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Diane M… Guberno … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Samardeep… Gupta … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
N … GUTOWSKI … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Fadi A … Haddad … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
John J … Halperin … 2006 Panelists IDSA
John J … Halperin … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Klára … Hanincová … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Nick … Harris … The ILADS Working Group
Afton L… Hassett … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Jana … Hercogová … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
B … Herwaldt … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
H … Hiekkanen … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Leslie G… Holness … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Eric … Hoppa … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Richard… Horowitz … The ILADS Working Group
Harold W… Horowitz … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
D … Ho-Yen … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
A … Indrikovs … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Joseph … Jemsek … The ILADS Working Group
Lorraine… Johnson … The ILADS Working Group Watch
Barbara J… Johnson … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Lorraine… Johnson … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Priya … Kannian … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Deepak … Kaushal … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Jerome O… Klein … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Mark S … Klempner … 2006 Panelists IDSA
Mark S … Klempner … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Peter J … Krause … 2006 Panelists IDSA
Peter J … Krause … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
A … Krause … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Paul M … Lantos … IDSA New Panelists
A … Lauhio … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Karen C… Lee … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Judith … Leventhal … The ILADS Working Group
Andrew… Levin … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Matthew… Liang … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Dionysios… Liveris … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
J … LOVETT … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Charles T… Lucey … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Sara … Ludin … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
J … Martinez … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
S … Mavin … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Gail … McHugh … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Gerald … Medoff … IDSA New Panelists
Laurence… Meer-Scherrer … The ILADS Working Group
Manuel H… Moro … IDSA New Panelists
Robert R… Müllegger … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
David M… Mushatt … IDSA New Panelists
Robert B… Nadelman … 2006 Panelists IDSA
Robert B… Nadelman … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
J … Nikoskelainen … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
D … Nyman … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
EVANS, S… O'CONNELL … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
J … Oksi … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Jeffrey … Parsonnet … IDSA New Panelists
N … Parveen … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Eleni … Patrozou … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
M … Peltomaa … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Mario T… Philipp … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Steven … Phillips … The ILADS Working Group
Lisa … Phillips … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
A … Pitkäranta … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Alan A … Pollock … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Bruce … Polsky … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
S… Primus … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Diane C… Radvanski … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Bernard … Raxlen … The ILADS Working Group
Josiah D… Rich … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Gregory K… Robbins … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
W … Rösch … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Maria … Rosenfeld … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
John W… Sanders … IDSA New Panelists
J … Sarria … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
B … Sarvat … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Shantal V… Savage … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Ira … Schwartz … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
I … Seppälä … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Eugene D… Shapiro … 2006 Panelists IDSA
Eugene D… Shapiro … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Virginia … Sherr … The ILADS Working Group
Leonard H… Sigal … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Vijay K… Sikand … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Harold … Smith … The ILADS Working Group
Pat … Smith … The ILADS Working Group
Barbara… Smith … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Peter P … Sordillo … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Emilia … Sordillo … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Joshua … Spaete … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
D … "Spiro " … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Gerold … Stanek … 2006 Panelists IDSA
Gerold … Stanek … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Allen C… Steere … 2006 Panelists IDSA
Allen C… Steere … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
K … Stehr … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
A … Steiner … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
J … Stephen Dumler … 2006 Panelists IDSA
J … StephenDumler … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Daniela P… Stokes … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Vincent J… Stracuzzi … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Raphael… Stricker … The ILADS Working Group … Watch
Raphael B… Stricker … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Franc … Strle … 2006 Panelists IDSA
Franc … Strle … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Joseph D… Sweeney … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Jamie … Talan … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Sam R … Telford … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
V … Valtonen … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Danielaá… Vanousová … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
M … Viljanen … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
David J… Volkman … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Jatin M… Vyas … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Arthur … Weinstein … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Jim M … Wilson … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Robert P… Wise … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Gary P … Wormser … 2006 Panelists IDSA
Gary P … Wormser … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Elmela … Zlatanic … IDSA 2006 Citation for Lyme Disease Diagnosis and Treatment
Saturday, April 25, 2009
Connecticut Attorney General's Office Challenges the ISDA 's 2006 Lyme Disease Guidelines due to Conflict of Interest
A ray of justice and hope...
http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
Connecticut Attorney General's Office
Press Release
Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter
May 1, 2008
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.
Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.
"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.
"The IDSA's Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines -- in effect a comprehensive reassessment through a new panel. The new panel will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman -- expert in medical ethics and conflicts of interest, selected by both the IDSA and my office -- will assess the new panel for conflicts of interests and ensure its integrity."
Blumenthal's findings include the following:
The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;
The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus";
The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.
IDSA has reached an agreement with Blumenthal's office calling for creation of a review panel to thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary. The panel -- comprised of individuals without conflicts of interest -- will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence. It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating.
Blumenthal added, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion. In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.
"Our investigation was always about the IDSA's guidelines process -- not the science. IDSA should be recognized for its cooperation and agreement to address the serious concerns raised by my office. Our agreement with IDSA ensures that a new, conflicts-free panel will collect and review all pertinent information, reassess each recommendation and make necessary changes.
"This Action Plan -- incorporating a conflicts screen by an independent neutral expert and a public hearing to receive additional evidence -- can serve as a model for all medical organizations and societies that publish medical guidelines. This review should strengthen the public's confidence in such critical standards."
THE GUIDELINE REVIEW PROCESS
Under its agreement with the Attorney General's Office, the IDSA will create a review panel of eight to 12 members, none of whom served on the 2006 IDSA guideline panel. The IDSA must conduct an open application process and consider all applicants.
The agreement calls for the ombudsman selected by Blumenthal's office and the IDSA to ensure that the review panel and its chairperson are free of conflicts of interest.
Blumenthal and IDSA agreed to appoint Dr. Howard A. Brody as the ombudsman. Dr. Brody is a recognized expert and author on medical ethics and conflicts of interest and the director of the Institute for Medical Humanities at the University of Texas Medical Branch. Brody authored the book, "Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry."
To assure that the review panel obtains divergent information, the panel will conduct an open scientific hearing at which it will hear scientific and medical presentations from interested parties. The agreement requires the hearing to be broadcast live to the public on the Internet via the IDSA's website. The Attorney General's Office, Dr. Brody and the review panel will together finalize the list of presenters at the hearing.
Once it has collected information from its review and open hearing, the panel will assess the information and determine whether the data and evidence supports each of the recommendations in the 2006 Lyme disease guidelines.
The panel will then vote on each recommendation in the IDSA's 2006 Lyme disease guidelines on whether it is supported by the scientific evidence. At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.
Once the panel has acted on each recommendation, it will have three options: make no changes, modify the guidelines in part or replace them entirely.
The panel's final report will be published on the IDSA's website.
ADDITIONAL FINDINGS OF BLUMENTHAL'S INVESTIGATION
IDSA convened panels in 2000 and 2006 to research and publish guidelines for the diagnosis and treatment of Lyme disease. Blumenthal's office found that the IDSA disregarded a 2000 panel member who argued that chronic and persistent Lyme disease exists. The 2000 panel pressured the panelist to conform to the group consensus and removed him as an author when he refused.
IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings. In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time -- a violation of IDSA's conflicts of interest policy.
The resulting IDSA and AAN guidelines not only reached the same conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language. Both entities, for example, dubbed symptoms persisting after treatment "Post-Lyme Syndrome" and defined it the same way.
When IDSA learned of the improper links between its panel and the AAN's panel, instead of enforcing its conflict of interest policy, it aggressively sought the AAN's endorsement to "strengthen" its guidelines' impact. The AAN panel -- particularly members who also served on the IDSA panel -- worked equally hard to win AAN's backing of IDSA's conclusions.
The two entities sought to portray each other's guidelines as separate and independent when the facts call into question that contention.
The IDSA subsequently cited AAN's supposed independent corroboration of its findings as part of its attempts to defeat federal legislation to create a Lyme disease advisory committee and state legislation supporting antibiotic therapy for chronic Lyme disease.
In a step that the British Medical Journal deemed "unusual," the IDSA included in its Lyme guidelines a statement calling them "voluntary" with "the ultimate determination of their application to be made by the physician in light of each patient's individual circumstances." In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment.
Blumenthal thanked members his office who worked on the investigation -- Assistant Attorney General Thomas Ryan, former Assistant Attorney General Steven Rutstein and Paralegal Lorraine Measer under the direction of Assistant Attorney General Michael Cole, Chief of the Attorney General's Antitrust Department.
View the entire IDSA agreement - (PDF-2,532KB)
http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
Connecticut Attorney General's Office
Press Release
Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter
May 1, 2008
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.
Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.
"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.
"The IDSA's Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines -- in effect a comprehensive reassessment through a new panel. The new panel will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman -- expert in medical ethics and conflicts of interest, selected by both the IDSA and my office -- will assess the new panel for conflicts of interests and ensure its integrity."
Blumenthal's findings include the following:
The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;
The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus";
The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
The IDSA portrayed another medical association's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.
IDSA has reached an agreement with Blumenthal's office calling for creation of a review panel to thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary. The panel -- comprised of individuals without conflicts of interest -- will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence. It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating.
Blumenthal added, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion. In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.
"Our investigation was always about the IDSA's guidelines process -- not the science. IDSA should be recognized for its cooperation and agreement to address the serious concerns raised by my office. Our agreement with IDSA ensures that a new, conflicts-free panel will collect and review all pertinent information, reassess each recommendation and make necessary changes.
"This Action Plan -- incorporating a conflicts screen by an independent neutral expert and a public hearing to receive additional evidence -- can serve as a model for all medical organizations and societies that publish medical guidelines. This review should strengthen the public's confidence in such critical standards."
THE GUIDELINE REVIEW PROCESS
Under its agreement with the Attorney General's Office, the IDSA will create a review panel of eight to 12 members, none of whom served on the 2006 IDSA guideline panel. The IDSA must conduct an open application process and consider all applicants.
The agreement calls for the ombudsman selected by Blumenthal's office and the IDSA to ensure that the review panel and its chairperson are free of conflicts of interest.
Blumenthal and IDSA agreed to appoint Dr. Howard A. Brody as the ombudsman. Dr. Brody is a recognized expert and author on medical ethics and conflicts of interest and the director of the Institute for Medical Humanities at the University of Texas Medical Branch. Brody authored the book, "Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry."
To assure that the review panel obtains divergent information, the panel will conduct an open scientific hearing at which it will hear scientific and medical presentations from interested parties. The agreement requires the hearing to be broadcast live to the public on the Internet via the IDSA's website. The Attorney General's Office, Dr. Brody and the review panel will together finalize the list of presenters at the hearing.
Once it has collected information from its review and open hearing, the panel will assess the information and determine whether the data and evidence supports each of the recommendations in the 2006 Lyme disease guidelines.
The panel will then vote on each recommendation in the IDSA's 2006 Lyme disease guidelines on whether it is supported by the scientific evidence. At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.
Once the panel has acted on each recommendation, it will have three options: make no changes, modify the guidelines in part or replace them entirely.
The panel's final report will be published on the IDSA's website.
ADDITIONAL FINDINGS OF BLUMENTHAL'S INVESTIGATION
IDSA convened panels in 2000 and 2006 to research and publish guidelines for the diagnosis and treatment of Lyme disease. Blumenthal's office found that the IDSA disregarded a 2000 panel member who argued that chronic and persistent Lyme disease exists. The 2000 panel pressured the panelist to conform to the group consensus and removed him as an author when he refused.
IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings. In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time -- a violation of IDSA's conflicts of interest policy.
The resulting IDSA and AAN guidelines not only reached the same conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language. Both entities, for example, dubbed symptoms persisting after treatment "Post-Lyme Syndrome" and defined it the same way.
When IDSA learned of the improper links between its panel and the AAN's panel, instead of enforcing its conflict of interest policy, it aggressively sought the AAN's endorsement to "strengthen" its guidelines' impact. The AAN panel -- particularly members who also served on the IDSA panel -- worked equally hard to win AAN's backing of IDSA's conclusions.
The two entities sought to portray each other's guidelines as separate and independent when the facts call into question that contention.
The IDSA subsequently cited AAN's supposed independent corroboration of its findings as part of its attempts to defeat federal legislation to create a Lyme disease advisory committee and state legislation supporting antibiotic therapy for chronic Lyme disease.
In a step that the British Medical Journal deemed "unusual," the IDSA included in its Lyme guidelines a statement calling them "voluntary" with "the ultimate determination of their application to be made by the physician in light of each patient's individual circumstances." In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment.
Blumenthal thanked members his office who worked on the investigation -- Assistant Attorney General Thomas Ryan, former Assistant Attorney General Steven Rutstein and Paralegal Lorraine Measer under the direction of Assistant Attorney General Michael Cole, Chief of the Attorney General's Antitrust Department.
View the entire IDSA agreement - (PDF-2,532KB)
Who is fighting it out over Lyme -Go ILADS instead
Who is fighting who over Lyme Disease? In a Nutshell: It is the ISDA (a private organization) and Infectious Disease against the CDC. IDSA and Infectious Disease say Lyme is over diagnosed and over treated and there is no such thing as chronic Lyme. The CDC says Lyme and Chronic Lyme is the fastest growing infectious disease in the US. That Lyme is so under reported that the actual number of Lyme cases report should be multiplied by 10 to get an accurate number to estimate the spread of Lyme. That number is higher than the spread of HIV by the way.
The ISDA is the one who published the guidelines for the treatment of Lyme that basically sets you up to get no treatment or inadequate treatment. But there is another treatment protocol. The ILADS Guidelines. ILADS is a 200 member peer reviewed group of multidisciplinary medical doctors who are dedicated to the study of Lyme and Chronic Lyme. Use the ILADS Guidelines when speaking to your physician. See the Guidlines here...
http://www.ilads.org/files/ILADS_Guidelines.pdf
in html
http://74.125.47.132/search?q=cache:lvoskN52J58J:www.ilads.org/files/ILADS_Guidelines.pdf+http://www.ilads.org/files/ILADS_Guidelines.pdf&cd=1&hl=en&ct=clnk&gl=us
The ISDA is the one who published the guidelines for the treatment of Lyme that basically sets you up to get no treatment or inadequate treatment. But there is another treatment protocol. The ILADS Guidelines. ILADS is a 200 member peer reviewed group of multidisciplinary medical doctors who are dedicated to the study of Lyme and Chronic Lyme. Use the ILADS Guidelines when speaking to your physician. See the Guidlines here...
http://www.ilads.org/files/ILADS_Guidelines.pdf
in html
http://74.125.47.132/search?q=cache:lvoskN52J58J:www.ilads.org/files/ILADS_Guidelines.pdf+http://www.ilads.org/files/ILADS_Guidelines.pdf&cd=1&hl=en&ct=clnk&gl=us
Under Our Skin - The Lyme Movie
So as the daughter of an agricultural geneticist I am familiar with scientific study on plants, the animals that eat the plants and the microbes that live on both. I worked most of my young adult life for my father doing scientific studies and double blinds and what not. I know scientific bullsh*t when I see it. There are somethings about the Lyme Disease Movie Under Our Skin that I do get and others I don't buy into.
To start out with. I do believe all the stories of the Lyme patients that where interviewed for the movie. I find their stories and symptom to be consistant with other Lyme survivors.
Personally my Chronic Stage 3 Lyme has gotten worse in the last year so I am a sucker for anything that looks like a cure. But not that big of a sucker. In fact my Lyme is much worse and it presents more like the onset of early stage Parkinson's Disease. (By the way I get my MRI result on Monday at 4:00. I will keep you posted.)
So I don't think there is a conspiracy to cover up Lyme in the medical community. I think doctors take their Hippocratic Oath seriously. My GP had no reservations about suggesting my symptoms may be Lyme or testing me for it. But he stuck to the standard protocol with treatment. I think he felt he was doing the correct and recommended treatment.
I saw in the Lyme Disease Movie Under Our Skin that the recommended treatment of the Lyme literate doctors was indeed curing their patients but was also nearly killing them in the process. This is worrisome.
The statement that Lyme testing has not been improved upon since it conception is false. Glaxo Welcome "improved" upon the Western Blot test when they produced their LymeRix Vaccine.
The notes below summarize the "improvement" use your own judgement.
Noted "Five months later, in October, the same two-step serological standard was adopted for surveillance and research purposes in Dearborn, Michigan, at the Second National Conference on Lyme Disease Testing, sponsored by the Association of State and Territorial Public Health Laboratory Directors and the CDC. The most divisive part of the two-step diagnostic standard - now called the Dearborn criteria - was elimination from the Western blot of two Bb proteins, outer surface protein A (OspA), from which LYMErix was made, and outer surface protein B (OspB), the intended component of next-generation vaccines. For the vaccine trials, this made sense. In a universe of the vaccinated, testing for OspA antibodies would only serve to blur the line between inoculation and disease. But removal of OspA and OspB for other purposes was viewed with alarm by many practitioners, who knew these proteins were specific to Lyme disease and sometimes the only markers present in those with late-stage disease."
The test had some of the Osp A and Osp B added back in. But no one is sure what is really covers anymore.
Now I do buy into the fact that the ISDA (a private organization) has made a flawed recommendations for the treatment and identification of Lyme. The members of the panel who wrote the recommendations only used their own research to create the protocol and that is unprofessional and arrogant but not criminal. Is it political or Financial - Humm I don't know? Some doctors say "first do no harm" others say "first do no harm to my wallet". Which one of these groups did the panelist fall into - I don't know that I would go that far. Well the FDA just got a slap on the hand for doing political medicine concerning stem cell research possibly a similar slap is to follow the ISDA for Lyme.
Did Infectious Disease swallow the gravy of ISDA hook line and sinker with out doing any real questioning? You bet but that just makes them big bureaucratic and stupid not evil.
Is it a conspiracy on the part of the insurance companies? I wouldn't doubt that a bit. Tobacco companies are more honest then they are. I worked in bio statistics for an insurance company just out of college and they where the most rotten thieving lying people I ever met. It was like working for Satan.
I took away one very important item from the Lyme Movie Under Our Skin. That in our state of NC we need to pass a law that insurance companies may not recommend that a doctors license to practice medicine be removed, revoked or suspended. The fact that they can do this is a confllict of interest. If an actual patient was harmed then that needs to be a complaint logde by the patient or family of the patient. Not by an insurance company.
A few other things I think are important are to get more information on the BIO-film finds of Dr. McDonalds.
There was an odd statemnnt made by one of the Lyme doctors too. "Every patient we have seen who has been diagnosised with Parkinson, Alzhiemers or MS all tested postive for Lyme - 100% All of them". As a researcher of all types of data - I have never in my life had a scientific test be 100%. Infact a 100% score would cause me to question my research. So if this statement is infact true it causes me to seriously question what the Lyme test is measuring.
It also prays upon the hopes of the seriously ill people with Parkinson, Alzhiemers or MS.
To start out with. I do believe all the stories of the Lyme patients that where interviewed for the movie. I find their stories and symptom to be consistant with other Lyme survivors.
Personally my Chronic Stage 3 Lyme has gotten worse in the last year so I am a sucker for anything that looks like a cure. But not that big of a sucker. In fact my Lyme is much worse and it presents more like the onset of early stage Parkinson's Disease. (By the way I get my MRI result on Monday at 4:00. I will keep you posted.)
So I don't think there is a conspiracy to cover up Lyme in the medical community. I think doctors take their Hippocratic Oath seriously. My GP had no reservations about suggesting my symptoms may be Lyme or testing me for it. But he stuck to the standard protocol with treatment. I think he felt he was doing the correct and recommended treatment.
I saw in the Lyme Disease Movie Under Our Skin that the recommended treatment of the Lyme literate doctors was indeed curing their patients but was also nearly killing them in the process. This is worrisome.
The statement that Lyme testing has not been improved upon since it conception is false. Glaxo Welcome "improved" upon the Western Blot test when they produced their LymeRix Vaccine.
The notes below summarize the "improvement" use your own judgement.
Noted "Five months later, in October, the same two-step serological standard was adopted for surveillance and research purposes in Dearborn, Michigan, at the Second National Conference on Lyme Disease Testing, sponsored by the Association of State and Territorial Public Health Laboratory Directors and the CDC. The most divisive part of the two-step diagnostic standard - now called the Dearborn criteria - was elimination from the Western blot of two Bb proteins, outer surface protein A (OspA), from which LYMErix was made, and outer surface protein B (OspB), the intended component of next-generation vaccines. For the vaccine trials, this made sense. In a universe of the vaccinated, testing for OspA antibodies would only serve to blur the line between inoculation and disease. But removal of OspA and OspB for other purposes was viewed with alarm by many practitioners, who knew these proteins were specific to Lyme disease and sometimes the only markers present in those with late-stage disease."
The test had some of the Osp A and Osp B added back in. But no one is sure what is really covers anymore.
Now I do buy into the fact that the ISDA (a private organization) has made a flawed recommendations for the treatment and identification of Lyme. The members of the panel who wrote the recommendations only used their own research to create the protocol and that is unprofessional and arrogant but not criminal. Is it political or Financial - Humm I don't know? Some doctors say "first do no harm" others say "first do no harm to my wallet". Which one of these groups did the panelist fall into - I don't know that I would go that far. Well the FDA just got a slap on the hand for doing political medicine concerning stem cell research possibly a similar slap is to follow the ISDA for Lyme.
Did Infectious Disease swallow the gravy of ISDA hook line and sinker with out doing any real questioning? You bet but that just makes them big bureaucratic and stupid not evil.
Is it a conspiracy on the part of the insurance companies? I wouldn't doubt that a bit. Tobacco companies are more honest then they are. I worked in bio statistics for an insurance company just out of college and they where the most rotten thieving lying people I ever met. It was like working for Satan.
I took away one very important item from the Lyme Movie Under Our Skin. That in our state of NC we need to pass a law that insurance companies may not recommend that a doctors license to practice medicine be removed, revoked or suspended. The fact that they can do this is a confllict of interest. If an actual patient was harmed then that needs to be a complaint logde by the patient or family of the patient. Not by an insurance company.
A few other things I think are important are to get more information on the BIO-film finds of Dr. McDonalds.
There was an odd statemnnt made by one of the Lyme doctors too. "Every patient we have seen who has been diagnosised with Parkinson, Alzhiemers or MS all tested postive for Lyme - 100% All of them". As a researcher of all types of data - I have never in my life had a scientific test be 100%. Infact a 100% score would cause me to question my research. So if this statement is infact true it causes me to seriously question what the Lyme test is measuring.
It also prays upon the hopes of the seriously ill people with Parkinson, Alzhiemers or MS.
Monday, April 20, 2009
Chronic Lyme - Memory Loss
This is to encourage you to seek help from an auto-immune disease professional not just a Lyme doctor. Memory and recall is huge problem for people with Chronic Lyme.
Arch Neurol. 2009 Mar;66(3):312.
Young-onset dementia: demographic and etiologic characteristics of 235 patients.
Kelley BJ, Boeve BF, Josephs KA.
Department of Neurology, Mayo Clinic, Rochester, MN 55905, USA.
BACKGROUND: Onset of dementia before age 45 years presents a difficult clinical circumstance, having a broad differential diagnosis and numerous psychosocial implications for the patient and their family. Few data exist regarding the demographics characterizing this population or the etiologic diagnoses among those affected. OBJECTIVES: To characterize the demographic characteristics and the etiologic causes of dementia with age at onset younger than 45 years. DESIGN: Observational, retrospective, single-cohort study. SETTING: Multispecialty group academic medical center. PATIENTS: We searched the Mayo Clinic Rochester electronic Medical Record Linkage System to identify individuals who were seen for evaluation of progressive cognitive decline between the ages of 17 and 45 years from January 1996 through December 2006. This search identified 235 individuals who met the established inclusion and exclusion criteria. MAIN OUTCOME MEASURES: All available clinical, laboratory, magnetic resonance imaging, and pathological data were reviewed. RESULTS: Causes varied, with neurodegenerative etiologies accounting for 31.1% of the cohort; Alzheimer disease was uncommon. Autoimmune or inflammatory causes accounted for 21.3%. At last follow-up, 44 patients (18.7%) had an unknown etiology, despite exhaustive evaluation. Cause varied with age, with inborn errors of metabolism being more common before age 30 years and with neurodegenerative etiologies being more common after age 35 years. CONCLUSIONS: Young-onset dementia (age at onset, <45 years) includes a broad variety of etiologies, with few patients having a potentially treatable disorder. The etiologic spectrum and the relative percentages of patients within etiologic groups differed in important ways from existing reports of early-onset dementia (ie, age at onset, <65 years).
PMID: 19001170 [PubMed - indexed for MEDLINE
Arch Neurol. 2009 Mar;66(3):312.
Young-onset dementia: demographic and etiologic characteristics of 235 patients.
Kelley BJ, Boeve BF, Josephs KA.
Department of Neurology, Mayo Clinic, Rochester, MN 55905, USA.
BACKGROUND: Onset of dementia before age 45 years presents a difficult clinical circumstance, having a broad differential diagnosis and numerous psychosocial implications for the patient and their family. Few data exist regarding the demographics characterizing this population or the etiologic diagnoses among those affected. OBJECTIVES: To characterize the demographic characteristics and the etiologic causes of dementia with age at onset younger than 45 years. DESIGN: Observational, retrospective, single-cohort study. SETTING: Multispecialty group academic medical center. PATIENTS: We searched the Mayo Clinic Rochester electronic Medical Record Linkage System to identify individuals who were seen for evaluation of progressive cognitive decline between the ages of 17 and 45 years from January 1996 through December 2006. This search identified 235 individuals who met the established inclusion and exclusion criteria. MAIN OUTCOME MEASURES: All available clinical, laboratory, magnetic resonance imaging, and pathological data were reviewed. RESULTS: Causes varied, with neurodegenerative etiologies accounting for 31.1% of the cohort; Alzheimer disease was uncommon. Autoimmune or inflammatory causes accounted for 21.3%. At last follow-up, 44 patients (18.7%) had an unknown etiology, despite exhaustive evaluation. Cause varied with age, with inborn errors of metabolism being more common before age 30 years and with neurodegenerative etiologies being more common after age 35 years. CONCLUSIONS: Young-onset dementia (age at onset, <45 years) includes a broad variety of etiologies, with few patients having a potentially treatable disorder. The etiologic spectrum and the relative percentages of patients within etiologic groups differed in important ways from existing reports of early-onset dementia (ie, age at onset, <65 years).
PMID: 19001170 [PubMed - indexed for MEDLINE
Lyme, Antibiotics and Lyme Doctors in NC - Chronic and Stage 3 Treatments
Lyme likes to coexists with a number of other bacteria and some viruses. Such as mono. I will dig up the autopsy studies for this. No pun intended. It is important to kill these bacteria with antibiotics and wage war on the viruses with steroids but once they are dead they are dead. Period. You don't have Lyme anymore unless you continue to test higher than .91 on a Western Blot Igm that specifically measures the Lyme Protein and Antibodies. If you get a negative result make sure to get a detail of the results. Certain parts of the Lyme test matter more than others. More on this from the test manufacturer and the CDC. If you have Chronic stage 3 Lyme like me you have probably taken the required 21 days of antibiotics and your Western Blot Igm is negative. You probably still feel like crap. What we have is now is the damage left over from Lyme. It is an autoimmune disorder now. There is not need to see a Lyme specialist. You just need to see an auto immune disorder specialist. But find one that acknowledges your Lyme and understands the value of the ELISA or IFA test versus the Western blot test "IgM" and "IgG." One that understands the debilitating left overs of Lyme.
I have met some real wack a do doctors who don't even acknowledge the existence of Lyme. If you end up in their doctors office. Don't get angry. Just find another doctor. I was diagnosed with Autism at 14. My whole life I have heard that Autism is really something else. Something standard and simple that a psychiatric professionals are more comfortable with. Because 24 years ago when Autism was new and misunderstood no one understood how to treat it - so they invalidated it. Now it is standard fare. So hang in there the medical community will catch up.
Also beware of the statistical report siteing doctor. Read the reports that he spouts off about. I have the luxury of having a brother who is one of the top bio statisticians in the country. So he actually understands the studies, metrics and testing standards. He is appalled at the misinformation I get from doctors who have read a study and just flat out misinterpret the study. But he says this is not uncommon in general with doctors because they are not trained statisticians. Do your own homework.
Here is an example: Just recently at infectious disease a doctor insisted to me that NCSU did tick gathering studies and crushed up the ticks and tested them for Lyme and could find not traces of Lyme in NC. I didn't bother arguing with him. My husband works for DNR and is part of the group that does the tick gathering and tick testing for the presence of Lyme. NCSU published the summary of their paper online. The paper itself clearly states that deer ticks that carry Lyme are not near the local population. Local populations are unlikely to get Lyme in NC. But the deer ticks found in the western part of the state in wild areas certainly do test positive for Lyme. In statistically significant numbers per the square meters of their habitat. If you are a wild life enthusiast in NC or deer hunter you may actually be exposed to Lyme.
While it should be the doctors responsibility to know his or her stuff. You may have to do your own research. If you feel like you know more about Lyme than your doctor. Get a new one.
Lastly watch out for the other side of the Medical Community. Alternative medicine works and it is anecdotal document for its value. Beware of the the Lyme doctor who prescribes strange herbal therapies that have few anecdotal studies to back them up or prescribes long term use of antibiotics and steroids. The therapies should fall with in the standard range for autoimmune disorder treatments. If you have neurological effects that seem like the early stages of Alzheimer's or Parkinson's get help from a Neurologist who is familiar with Lyme and prescribe treatments that are in line with early onset Alzheimer's or Parkinson's. Make sure they address serotonin and dopamine production. You will need and MRI at the very least.
I have met some real wack a do doctors who don't even acknowledge the existence of Lyme. If you end up in their doctors office. Don't get angry. Just find another doctor. I was diagnosed with Autism at 14. My whole life I have heard that Autism is really something else. Something standard and simple that a psychiatric professionals are more comfortable with. Because 24 years ago when Autism was new and misunderstood no one understood how to treat it - so they invalidated it. Now it is standard fare. So hang in there the medical community will catch up.
Also beware of the statistical report siteing doctor. Read the reports that he spouts off about. I have the luxury of having a brother who is one of the top bio statisticians in the country. So he actually understands the studies, metrics and testing standards. He is appalled at the misinformation I get from doctors who have read a study and just flat out misinterpret the study. But he says this is not uncommon in general with doctors because they are not trained statisticians. Do your own homework.
Here is an example: Just recently at infectious disease a doctor insisted to me that NCSU did tick gathering studies and crushed up the ticks and tested them for Lyme and could find not traces of Lyme in NC. I didn't bother arguing with him. My husband works for DNR and is part of the group that does the tick gathering and tick testing for the presence of Lyme. NCSU published the summary of their paper online. The paper itself clearly states that deer ticks that carry Lyme are not near the local population. Local populations are unlikely to get Lyme in NC. But the deer ticks found in the western part of the state in wild areas certainly do test positive for Lyme. In statistically significant numbers per the square meters of their habitat. If you are a wild life enthusiast in NC or deer hunter you may actually be exposed to Lyme.
While it should be the doctors responsibility to know his or her stuff. You may have to do your own research. If you feel like you know more about Lyme than your doctor. Get a new one.
Lastly watch out for the other side of the Medical Community. Alternative medicine works and it is anecdotal document for its value. Beware of the the Lyme doctor who prescribes strange herbal therapies that have few anecdotal studies to back them up or prescribes long term use of antibiotics and steroids. The therapies should fall with in the standard range for autoimmune disorder treatments. If you have neurological effects that seem like the early stages of Alzheimer's or Parkinson's get help from a Neurologist who is familiar with Lyme and prescribe treatments that are in line with early onset Alzheimer's or Parkinson's. Make sure they address serotonin and dopamine production. You will need and MRI at the very least.
Lyme Doctors in this area
Joe Jemsek 803-396-5885 (SC)
www.jemsekspecialty.com just south of Charlotte
www.jemsekspecialty.com just south of Charlotte
Lyme Exposure
Lyme Exposure:
I get bit by at least 100 ticks every year. I crawl on my belly through with weeds for hours to get the perfect shot. That’s usually with a camera – not a gun. However I do some limited deer and duck hunting to supplement my diet. I have dogs and I am around farm animals.
Do I remember any rashes or bites around tick areas? Yes lots of them – every year. Along with nasty spider bites, leech attachments and hundred of mosquito bites. I don’t about insect bites because they go away in a week or so. I was unaware of Lyme disease.
Where I’ve been in the last 5 years:
Black Rock Maryland to Mount Holly PA
Ahnapee State Trail Sturgeon Bay WI
Hot Springs NC to Black Mountain GA
Topsail Island NC – Sound Side Kayaking
Joyce Kilmer Memorial Forest, Nantahala National Forest, NC
Key West Florida – Kayaking
Carlsbad Cavern NM
Grand Canyon Rim to Rim
Half Dome Yosemite CA
Prairie Restoration Project Yosemite CA
I get bit by at least 100 ticks every year. I crawl on my belly through with weeds for hours to get the perfect shot. That’s usually with a camera – not a gun. However I do some limited deer and duck hunting to supplement my diet. I have dogs and I am around farm animals.
Do I remember any rashes or bites around tick areas? Yes lots of them – every year. Along with nasty spider bites, leech attachments and hundred of mosquito bites. I don’t about insect bites because they go away in a week or so. I was unaware of Lyme disease.
Where I’ve been in the last 5 years:
Black Rock Maryland to Mount Holly PA
Ahnapee State Trail Sturgeon Bay WI
Hot Springs NC to Black Mountain GA
Topsail Island NC – Sound Side Kayaking
Joyce Kilmer Memorial Forest, Nantahala National Forest, NC
Key West Florida – Kayaking
Carlsbad Cavern NM
Grand Canyon Rim to Rim
Half Dome Yosemite CA
Prairie Restoration Project Yosemite CA
Wednesday, April 15, 2009
No More Lyme Disease?
So this should give you an idea of how frustrating it is to get treated for Lyme.
Here is the CDC http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm
"2) The second step uses a Western blot test. Used appropriately, this test is designed to be "specific," meaning that it will usually be positive only if a person has been truly infected..." CDC website
The scoring range:
Negative<0.91
Equivocal 0.91 - 1.09
Positive >1.09
My Score 1.55
Positive right? Not according to Infectious Disease in Raleigh NC. According to them Lyme is rare and only infects people in the Northeast. Well I am sure it is rare if you are unwilling to believe the test results. They say test results are inconclusive and it is doubtful I ever had Lyme. I hike and camp all over the United States including the Northeast. I get infested with ticks when I am on a photo trip. Ddt doesnt help. Crawling through the grass and leaves for hours to get a good shot. I seem like a likely candidate for Lyme. Right?
"Well what other thing could be causing these Lyme like symptoms," I asked. Infectious Disease says - the flu. The flu??? My white cell count 5.5 and red blod cell count 4.22. I dont see flu. Plus my nasal flu test was negative.
Right...
Whats up with the reluctance to trust the Western Blot? Works great for so many other diseases. Why is Infectious Disease reluctant to validate Lyme.
According to the CDC North Carolina is 15th on the list of 52 states that report Lyme.But not that makes up 1/2% of all the reported Lyme cases. However in all state the reporting of Lyme is trending up and is according to the CDC the fastest growing infectious disease in the US. http://www.cdc.gov/ncidod/dvbid/Lyme/ld_statistics.htm
Hawaii
Colorado
Montana
South Dakota
New Mexico
Have one off reports of Lyme. Sorry if you have Lyme in these states you probably need to move to get help.
Some one else who feels like I do
CNN 10-year battle with pain highlights Lyme disease debate
Here is the CDC http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm
"2) The second step uses a Western blot test. Used appropriately, this test is designed to be "specific," meaning that it will usually be positive only if a person has been truly infected..." CDC website
The scoring range:
Negative<0.91
Equivocal 0.91 - 1.09
Positive >1.09
My Score 1.55
Positive right? Not according to Infectious Disease in Raleigh NC. According to them Lyme is rare and only infects people in the Northeast. Well I am sure it is rare if you are unwilling to believe the test results. They say test results are inconclusive and it is doubtful I ever had Lyme. I hike and camp all over the United States including the Northeast. I get infested with ticks when I am on a photo trip. Ddt doesnt help. Crawling through the grass and leaves for hours to get a good shot. I seem like a likely candidate for Lyme. Right?
"Well what other thing could be causing these Lyme like symptoms," I asked. Infectious Disease says - the flu. The flu??? My white cell count 5.5 and red blod cell count 4.22. I dont see flu. Plus my nasal flu test was negative.
Right...
Whats up with the reluctance to trust the Western Blot? Works great for so many other diseases. Why is Infectious Disease reluctant to validate Lyme.
According to the CDC North Carolina is 15th on the list of 52 states that report Lyme.But not that makes up 1/2% of all the reported Lyme cases. However in all state the reporting of Lyme is trending up and is according to the CDC the fastest growing infectious disease in the US. http://www.cdc.gov/ncidod/dvbid/Lyme/ld_statistics.htm
Hawaii
Colorado
Montana
South Dakota
New Mexico
Have one off reports of Lyme. Sorry if you have Lyme in these states you probably need to move to get help.
Some one else who feels like I do
CNN 10-year battle with pain highlights Lyme disease debate
Tuesday, April 14, 2009
Lyme Disease Day 21 of doxycycline - Ist treatment - Infectious Disease Appointment Raleigh NC
Ok - so I am on Day 21 of doxycycline. I am done with my drugs. This is my first and hopefully last antibiotic treatment for Lyme. Here is how it is supposed to work. You take doxycycline for 21 days in very high doses. You kill the Lyme bacteria and you are cured. However the negative rheumatological, brain, immune and nervous system problems you currently have may improve only slightly if at all. In short the damage is done and there is no going back. I am not sure I buy that. But it is not supposed to ever get worse. I like the sound of that.
What to do when taking doxycycline:
1. Don't lay down for an hour after you take it or you will get stomach upset.
2. Take your antacid 3 hours after your dose. If you take it right after you take your dose your antibiotics are not effective. That's bad because Lyme is bad.
3. Buy enemas because you are going to be amazed at how constipated you will get.
4. Fatigue sets in quickly but expect extreme lethargy by the last 7 days of your treatment.
Stick to it an you get well. That's the promise. Just hold on to that for now.
Tomorrow is my first appointment with Infectious Disease in Raleigh NC. I am hoping they will be a wealth of knowledge and resources. I probably shouldn't get my hopes up like that. So far no one has anything to say accept that they are sorry. But tomorrow I promise to dig deep for answers and come back with some hopeful news.
Most disturbing is my memory loss right now. So on a scale of Great, Good, Fair, Poor. Nothing about my memory is Great. My long term is Good. My short term is Fair and my Recall is Poor.
I am constantly missing meetings and it is really effecting my work. I have become a master of lying to cover my tracks. I am one of those people who rarely ever lied until the last year or so. So this really disturbs me. Far more than the tremors. How do you say to some one. "I skipped our meeting because I couldn't remember what it was about or your name. Yes I know I have worked with you for 2 years on this project but today I can't remember your name or what project we are working."
OR
I just forget I have a meeting. Then I say, "Oh yeah sorry about that I got called into a meeting to provide some statistics for the VP. Shouldn't happen again. Can we reschedule?"
I am an engineer and it won't be long before some body see the emperor has no clothes. I am loosing it.
Another thing I am loosing is my ability to spell and type. Sorry - hang in there with me.
What to do when taking doxycycline:
1. Don't lay down for an hour after you take it or you will get stomach upset.
2. Take your antacid 3 hours after your dose. If you take it right after you take your dose your antibiotics are not effective. That's bad because Lyme is bad.
3. Buy enemas because you are going to be amazed at how constipated you will get.
4. Fatigue sets in quickly but expect extreme lethargy by the last 7 days of your treatment.
Stick to it an you get well. That's the promise. Just hold on to that for now.
Tomorrow is my first appointment with Infectious Disease in Raleigh NC. I am hoping they will be a wealth of knowledge and resources. I probably shouldn't get my hopes up like that. So far no one has anything to say accept that they are sorry. But tomorrow I promise to dig deep for answers and come back with some hopeful news.
Most disturbing is my memory loss right now. So on a scale of Great, Good, Fair, Poor. Nothing about my memory is Great. My long term is Good. My short term is Fair and my Recall is Poor.
I am constantly missing meetings and it is really effecting my work. I have become a master of lying to cover my tracks. I am one of those people who rarely ever lied until the last year or so. So this really disturbs me. Far more than the tremors. How do you say to some one. "I skipped our meeting because I couldn't remember what it was about or your name. Yes I know I have worked with you for 2 years on this project but today I can't remember your name or what project we are working."
OR
I just forget I have a meeting. Then I say, "Oh yeah sorry about that I got called into a meeting to provide some statistics for the VP. Shouldn't happen again. Can we reschedule?"
I am an engineer and it won't be long before some body see the emperor has no clothes. I am loosing it.
Another thing I am loosing is my ability to spell and type. Sorry - hang in there with me.
Monday, April 13, 2009
Wednesday, April 1, 2009
Lyme disease treatment - Day 7
Lyme Disease: The antibiotics are going ok. I had to double up last night because I missed my morning dose. I was able to take the two nightly doses about 3 hours apart. My stomach did not bother me because I stayed up and watched the Mentalist. Everybody was commiting crimes because they had been hypnotized. Maybe thats my problem too. I heard a nice quote from Micheal J Fox on Oprah yesterday.
"somebody said to me one time that happiness grows in direct proportion to your acceptance and in inverse proportion to your expectations," he says. "So if you can just kind of say: 'Well, this is what I have today. Now, I didn't have a choice about this, but I have a million other choices I can make today. I can choose where I go. I can choose how I feel about where I go.' … If I make those choices well, I'm going to be a happy person."
I am embrassing this with a twist. I thinkGod drives true joy. I mean real joy not just happiness. Also I think God gives our suffering purpose and meaning. So my quote would go something like this...
"God tells us that real joy grows in direct proportion to your acceptance of his will and in inverse proportion to your own personal expectations". "So I tell myself "I have today. Now, I didn't have a choice about Lyme, but I have a million other choices I can make today with Gods help they will be Godly ones. It is my prayer that he will show me where I need to go. And that he will teach me about how I feel about where I go.' … If I make these choices with Gods help I'm going to be a joyful person, even in face of suffering."
Today is not a day of suffering - today seems to be a day of reasonably good health. This is a reason to celebrate. I think I will buy a cup cake for lunch.
"somebody said to me one time that happiness grows in direct proportion to your acceptance and in inverse proportion to your expectations," he says. "So if you can just kind of say: 'Well, this is what I have today. Now, I didn't have a choice about this, but I have a million other choices I can make today. I can choose where I go. I can choose how I feel about where I go.' … If I make those choices well, I'm going to be a happy person."
I am embrassing this with a twist. I thinkGod drives true joy. I mean real joy not just happiness. Also I think God gives our suffering purpose and meaning. So my quote would go something like this...
"God tells us that real joy grows in direct proportion to your acceptance of his will and in inverse proportion to your own personal expectations". "So I tell myself "I have today. Now, I didn't have a choice about Lyme, but I have a million other choices I can make today with Gods help they will be Godly ones. It is my prayer that he will show me where I need to go. And that he will teach me about how I feel about where I go.' … If I make these choices with Gods help I'm going to be a joyful person, even in face of suffering."
Today is not a day of suffering - today seems to be a day of reasonably good health. This is a reason to celebrate. I think I will buy a cup cake for lunch.
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