Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Dear Charlotte Observer,
I was so saddened by the poor quality and research done on the Charlotte Observer's stories about Dr. Jemsek.
By bringing charges against Dr. Jemsek it is obvious the N.C. Medical Board does not know how to treat Lyme disease (LD). Dr. Jemsek is one of the best doctors in the country in treating Lyme disease and people from all over the country and world travel to Charlotte to see him. Dr. Jemsek's website is considered to be one of the best websites online to educate the medical community and public about Lyme disease and co-infectors.
Accusing Dr. Jemsek of not following standard protocol for testing Lyme disease simply illustrates what a good doctor he is. The first test most doctors, ignorant of Lyme disease, give is the ELISE test--this test is a waste of time and money as the test only has a 50% accuracy rate.
Doctors who have been in the trenches treating people with Lyme disease know it is just one of many bacteria, parasites and reovirus that ticks can spread. Ticks spread:
* Bacterium including: Bartonella, Mycoplasma, Relapsing Fever and Tularemia,
* Parasites including: Babesiosis (a parasite kin to malaria--anyone suspected of having LD probably has this too), rickettsiae like Ehrlichiosis or Rocky Mountain spotted fever (which is a rickettsii parasite), and
* Reovirus including: Powassan encephalitis and Colorado Tick Fever.
The problem with testing for Lyme disease and co-infectors is the poor tests available. Lyme disease is more accurately called Borrelia burgdorferi (Bb). The test that look for this bacteria in the human body only look for antibodies of the body fighting the Bb--if the body is so overwhelmed by the bacteria it has stopped fighting the Bb even the best test (the Western blot) sent to the best laboratory (IGENEX or Bowen) will show no antibodies. The Center for Disease and Prevention (CDC) says that Lyme disease is a clinical diagnosis.
You might consider talking to area veterinarians as they are better educated in identify Lyme disease in N.C. The North Carolina Lyme Disease Foundation was started by two veterinarians.
Lyme disease is first cousin to syphilis and has been called the great imitator. Different people show different symptoms. Many with Lyme disease have been misdiagnosed with MS, Parkinson's disease or Alzheimer's disease among other misdiagnosis.
Less than half of the people who get Lyme disease remember a tick bite--fewer than that get the bulls-eye rash. Lyme literate doctors know that 14 to 28 days of antibiotics is not enough to kill the Bb bacteria. The Bb is very smart and lives in three different forms in the human body. The original bacteria state, the "L" form and the cyst form. After taking an antibiotic the bacteria will change into the cyst form within hours to protect itself. In the cyst form the bacteria reproduces and hides with a coating of the victims own cells, tricking the immune system into thinking it is part of the body. Then, when the person is under stress (physical or mental), the bacteria will come out--only now the Bb has multiplied many times over within the cyst. Not only must antibiotics be given--but also cyst stripping drugs so the antibiotics can get to the Bb in all its forms.
Southern Tick Associated Rash Illness (STARI) is more correctly called Master's disease after Dr. Ed Master's in M.O. who identified this disease in the early 1990's and reported it to the CDC.
Master's disease comes on slow, taking decades to cripple a person. Master's disease takes more time to eradicate and treat than Lyme disease. People with Master's disease have horrible fatigue and are often diagnosed with Chronic fatigue, chronic Ebstein-Barr (mono) or fibromilagia. People with Master's disease have mental fog, ADD, thyroid problems, migrating joint pain, mental problems and sleep issues which often results in being over weight.
If you are going to quote someone about STARI/Master's disease I suggest you speak with Dr. Master's as it is obvious to me that Dr. David Weber knows nothing about Master's disease other than a short paragraph he read in a medical book in the 1990s. New discoveries are being made daily about the huge spread of tick-vector illnesses in the United States, like half the people getting tick-vector diseases are children. That means children with Master's disease right now wont have unmanageable symptoms for several decades. Dr. Master's identified the disease and reported it to the CDC. People all over the South and other parts of the country travel to see Dr. Master's to treat their tick-related illnesses. I doubt Dr. Weber has treated anyone with Master's disease.
My husband, my children and I all have Lyme disease and Master's disease. I am shocked and appalled that a big-city newspaper like the Charlotte Observer would do such a poor job researching your stories. Your stories only touch the tip of the Lyme disease controversy.
There are people all over the Southeast with undiagnosed Lyme disease and co-infectors. You have the power and opportunity to help so many identify that they aren't "just getting old" as most doctors will tell them.
Many people in North Carolinia have a disease that can be cured. You can make that happen by educating the public and the medical community, please do.
Sincerely, Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
| IP: Logged |
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
| IP: Logged |
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
vitch,
I will include your link--did everythig else look o.k?
Did I miss spell or miss quote or come off sounding like a nut?
Just let me know...
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
| IP: Logged |
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
| IP: Logged |
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
I can find it--I was waiting to send--but maybe if you post it some other folks will write!
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
| IP: Logged |
I was so saddened by the poor quality and research done on the Charlotte Observer's stories about Dr. Jemsek.
By bringing charges against Dr. Jemsek it is obvious the N.C. Medical Board does not know anything about treating Lyme disease (LD). Dr. Jemsek is one of the best doctors in the country in treating Lyme disease and people from all over the country and world travel to Charlotte to see him. Dr. Jemsek's website is considered to be one of the best websites online to educate the medical community and public about Lyme disease and co-infectors.
Accusing Dr. Jemsek of not following standard protocol for testing Lyme disease simply illustrates what a good doctor he is. The first test most doctors, ignorant of Lyme disease, give is the ELISA test--this test is a waste of time and money as the test only has a 50% accuracy rate.
Doctors who have been in the trenches treating people with Lyme disease know it is just one of many bacteria, parasites and reovirus that ticks can spread. Ticks spread:
* Bacterium including: Bartonella, Mycoplasma, Relapsing Fever and Tularemia,
* Parasites including: Babesiosis (a parasite kin to malaria--anyone suspected of having LD probably has this too), rickettsiae like Ehrlichiosis or Rocky Mountain spotted fever (which is a rickettsii parasite), and
* Reovirus including: Powassan encephalitis and Colorado Tick Fever.
The problem with testing for Lyme disease and co-infectors is the poor tests available. Lyme disease is more accurately called Borrelia burgdorferi (Bb). The tests that look for this bacteria in the human body only look for antibodies of the immune system fighting the Bb--if the immune system is so overwhelmed by the bacteria it has stopped fighting the Bb, even the best test (the Western Blot) sent to the best laboratory (IGENEX or Bowen) will show no antibodies. The Center for Disease and Prevention (CDC) says that Lyme disease is a clinical diagnosis.
You might consider talking to area veterinarians as they are better educated in identifying Lyme disease in N.C. The North Carolina Lyme Disease Foundation was started by two veterinarians. They are well aware of the prevalence of this disease in North Carolina.
Lyme disease is first cousin to syphilis and has been called the Great Imitator. Different people show different symptoms. Many with Lyme disease have been misdiagnosed with MS, Parkinson's disease or Alzheimer's disease among other misdiagnoses.
Fewer than half of the people who get Lyme disease remember a tick bite--fewer than that get the bulls-eye rash. Lyme literate doctors know that 14 to 28 days of antibiotics is not enough to kill the Bb bacteria. The Bb is very smart and lives in three different forms in the human body. The original bacteria state, the "L" form and the cyst form. After taking an antibiotic the bacteria will change into the cyst form within hours to protect itself. In the cyst form the bacteria reproduces and hides with a coating of the victim's own cells; tricking the immune system into thinking it is part of the body. Then, when the person is under stress (physical or mental), the bacteria will come out--only now the Bb has multiplied many times over within the cyst. Not only must antibiotics be given--but also cyst stripping drugs so the antibiotics can get to the Bb in all its forms.
Southern Tick Associated Rash Illness (STARI) is more correctly called Master's disease after Dr. Ed Master's in M.O. who identified this disease in the early 1990's and reported it to the CDC.
Master's disease comes on slow, taking decades to cripple a person. Master's disease takes more time to eradicate and treat than Lyme disease. People with Master's disease have horrible fatigue and are often diagnosed with Chronic fatigue, chronic Ebstein-Barr (mono) or fibromyalgia. People with Master's disease have mental fog, ADD, thyroid problems, migrating joint pain, mental problems and sleep issues. which often results in being over weight. ***I would leave this out or revise your statement***
If you are going to quote someone about STARI/Master's disease, I suggest you speak with Dr. Masters, as it is obvious to me that Dr. David Weber knows nothing about Master's disease other than a short paragraph he read in a medical book in the 1990s. New discoveries are being made daily about the huge spread of tick-vector illnesses in the United States. For example, half the people getting tick-vector diseases are children. That means children with Master's disease right now won't have unmanageable symptoms for several decades. Dr. Master's identified the disease and reported it to the CDC. People all over the South and other parts of the country travel to see Dr. Masters to treat their tick-related illnesses. I doubt Dr. Weber has treated anyone with Master's disease.
My husband, my children and I all have Lyme disease and Master's disease. I am shocked and appalled that a big-city newspaper like the Charlotte Observer would do such a poor job researching their stories. The stories only touch the tip of the Lyme disease controversy.
There are people all over the Southeast with undiagnosed Lyme disease and co-infectors. You have the power and opportunity to help so many identify that they aren't "just getting old" as most doctors will tell them.
Many people in North Carolinia have a disease that can be cured. You can help them obtain a proper diagnosis by educating the public and the medical community. **** note change here***
Sincerely, Linda
Don't hit me!! {Hope I'm not too late.}
If I am, don't worry....the errors I corrected are not that vital.
PS.. are you sure about "reovirus"? I've heard of a retrovirus, but not a reovirus.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
The test that look for this bacteria in the human body only look for antibodies of the body fighting the Bb--if the body is so overwhelmed by the bacteria it has stopped fighting the Bb even the best test (the Western blot) sent to the best laboratory (IGENEX or Bowen) will show no antibodies.
To me, this whole section (can't figure out how to bold it all) is cumbersome. I'd probably just put a period after Bb then start a new sentence.
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
You all are GREAT!!!!!
Thank you so much for taking the time to edit this--I'm gonna put my name on it so i don't want to look like a FOOL as well as a paranoid hypercondriat!
THANK YOU!!!!
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
| IP: Logged |
posted
Linda, Writing the Charlotte Observer is a great idea!! It's obvious you've put a lot of time & thought into writing your letter. I'm so glad you're giving them reliable info about Lyme & other Tick-Borne Diseases.
I'll make a couple suggestions on minor points, but how it's written is definitely what you prefer.
Instead of co-infector, I think it would be a little more accurate to say "co-infections". That's what Dr B uses in his "Diag Hints & Treatment Guidelines..." www.ilads.org/basic.html
When referring to the best labs- IGeneX (Calif) & Medical Diagnostic Lab (NJ) test for antibodies. Bowen Lab (FL) has developed a new test that looks for the pathogens for Lyme, Babesiosis & Ehrlichiosis, but not antibodies.
People who have studied Lyme understand the details & complexities of Lyme, but when someone is just learning, too many details can be overwhelming.
Generally speaking, the people at the newspaper prefer info to be short & concise. If it's not too long, they may print it. Put a few really good websites at the end for those who want more info.
You may want to omit some of the info about how Bb evades the immune system. Then you could add to the list of "misdiagnoses". EX: ADD, ADHD, Fibromyalgia, Chronic Fatigue Syndrome, ALS, Psychiatric problems. This may do more to catch their attention.
Same with STARI. Info about STARI is so important in the Southeast, but too many details may be confusing for whoever is reading your letter.
Important points to include would be: STARI is a Lyme-like disease, Same symptoms as Lyme, Strain of bacteria is different, so Lab tests for Lyme are negative, STARI is transmitted by the Lone Star Tick.
I hope your letter gets the attention it deserves!! Maybe they will feature a Lyme disease article to help educate the public.
You have set an example that more of us need to follow - Get accurate, reliable info into the hands of the media.
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
posted
I think this is an excellent idea. A couple of folks have written some very good things I've seen in the last 2 days alone.
What do you think about putting together something like a "master" that we could all send to our respective newspapers.
Some of us don't have enough of a lyme brain to put these together. But, if we all lended a hand to the extent we can, perhaps we could create such a thing.
Most of us would at least be able to send it to our newspapers.
What do you think?
quote:Originally posted by cbb: You have set an example that more of us need to follow - Get accurate, reliable info into the hands of the media.
posted
I think it's Epstein-Barr (not Ebstein). I'm not so sure about Master's Disease coming on so slow. I thought Master's Disease and Lyme symptoms were similar the difference being the type of tick.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
| IP: Logged |
posted
cbb had some EXCELLENT points. Since I did not read the original letter you are responding to, I wasn't sure what you should or should not say.
I think your letter was somewhat more technical than most people care to read.
pab....Master's has the same symptoms, but it is supposed to be as Linda said, slower in progression and harder to get rid of. The Lone Star tick is usually the tick of choice. I most likely have Master's.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
thank you all for writing - i can't write anymore, but maybe, someday!!
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Roll Eyes]](rolleyes.gif)
Printer-friendly view of this topic