Famous People

Rebecca Wells is the author of Divine Secrets of the Ya Ya Sisterhood. She has a secret though. Want to know what it is? She has Lyme Disease. She announced in 2005 that back when she was writing the novel that she was battling a variety of symptoms. She saw 12 different doctors before finding out what ailed her. She battled this illness for 5 to 6 years before getting her diagnosis in 2004.

Amy Tan is also an author. Her latest book that I know about is called Saving a Fish from Drowning. It was published in 2006. I have not read any of her bodies of works, but I do know something special about Amy Tan. Amy Tan has been battling Lyme Disease since 1999. I'm not sure about her health status now, but here is her website where she talks about Lyme Disease. Here she is reading some of her book.

Amy Tan also was in Under Our Skin and talked about Lyme Disease at the Tribecca Film Festival where Under Our Skin was first shown. They refer to her here as "former Lyme patient." So I am assuming she is doing well at this time. However like others who "do well" ... a relapse could always happen.

Daryl Hall and John Oates have been working together since the 70's. Their songs are some of the best ever recorded and one of my favorites is "Maneater." In 2005, Daryl Hall had to cancel some of his performances with John Oates after his diagnosis of Lyme Disease. In June of 05, he wasn't feeling well and had to cancel one show. Then shortly after he performed, but had to stop half way through the performance. Then had to cancel the show altogether. On his blog, he said he would be on antibiotics for a month and be CURED. That was before he had done his research.

Here is his interview with Inside Edition on Lyme Disease.

Here are some Youtube videos of my favorite Hall & Oates songs.

Maneater
Kiss on my List
Rich Girl
Out of Touch
You've Lost that Loving Feeling
(though it was originally done in 1965 by the Righteous Brothers)

Hopefully Daryl Hall is feeling much better now.

Plum Island

This came from my Living the Lyme Life Blog as well, September 2008. Edited to fit the Tick Lady Blog.

It was the fall of 2007 when I first heard about the Plum Island Conspiracy Theory. Plum Island has been historically used for the Military (from the late 1700's to the mid 1900's). In 1954, the Department of Agriculture took over the island from the Military and established the Plum Island Animal Disease Center. In 2003, US Department of Homeland Security took over the island and the facility. Plum Island is not open to the public and can only be accessed by people that work for the United States Department of Homeland Security. To learn more about Plum Island including it's historic lighthouse, click here.

Plum Island is only accessible by a ferry. There are two ferry docks for getting to Plum Island. One is near Long Island and the other is Old Saybrook Connecticut. The official government position is that no animal pathogens have escaped in 50 years on the island. Conspiracy theorists beg to differ.

Is it merely a coincidence that what we now call Lyme Disease first appeared in the 1970's a few miles from the dock at Old Saybrook (which is near Lyme CT)? Is it merely coincidental that West Nile Virus as appeared near the dock off of Long Island NY? There are also websites that suggest that the lab is a Level 3 lab even though they do work on Level 4 diseases. Those same websites suggest that they are even secretly labeled Level 5. However, level 5 labs are not allowed on the Continental US. I wonder since technically it's an island off the Continental US if that is how they got away with the secret Level 4 & 5 work. Of course this is just MY opinion and it may not be accurate, but I'm just merely reitterating what I've read on other websites. And in my opinion, it makes sense.

I did find this on Plum Island on the EPA website. However, it appears to be just be discussing power reduction on the island. My thoughts are Plum Island are more of a "hum wonder if it could be ..." I do find curiosity in that Lyme Disease is studied there. The first cases were close to the dock that only governmental employees were (and are) allowed to use. What if one person on the island was contaminated 30 years ago and brought it onto the mainland. There are several books on the subject. One is a "fictional" novel called Poison Plum. I've read it and wow it's impressive. The other is called Lab 257. I have not had the opportunity to read this one yet, but the author was about 20 feet from this island taking pictures of a facility/island that is under such supposed security and restrictions. Yet, no one told him to leave.

The reason I was so interested in Plum Island in 2008 was that they were looking at 6 cities for a new biolab to replace Plum Island. One of the new potential sites was in my home county. Back in 2008, I wrote:

If the government did somehow release (accidentally or on purpose) Lyme Disease (or West Nile Virus or heck let's go further and say Anthrax), why would any of us want this in our own back yard? Theoretically, yes they would study diseases on animals and possibly find cures that would help us. But, what are the chances that it would release these deadly diseases on unsuspecting citizens. I don't know about you, but I don't think I would want "Butner Disease."

And furthermore, this article posted in the New York Times mentioned that a laptop disappeared from a biocontainment area of one of the labs in 2003. And to quote Mr. Glennon, "'If a laptop can walk out of a biocontainment area, how about a vial of pathogens?''

Here are some websites I used to gather what information I posted above
Plum Island Patricia Doyle
Plum Island Animal Disease Center Website
Animal Parasitic Diseases
Biolob 3 or 4 or 5?
Document on Plum Island
No Biolab
Poison Plum
Lab 257
Tikiwiki
CNN article
And go to this VERY INTERESTING ARTICLE

Kansas won the bid for the new biolab. Pray for the people in Kansas.

Videos

I posted these videos on my Living the Lyme Life blog in 2008. While searching for Lyme Disease, I found a few videos on You Tube. This particular set of videos are from a radio station in Washington DC on KJFK with Andy Abrahams Wilson from June 17, 2008. For those of you that do not know, Andy is the director of a documentary about Lyme Disease called Under Our Skin. I found these to be very interesting and hope they shed some light on Lyme Disease and the documentary.

There are three parts to the video and combined they last 27 to 30 minutes. They discuss symptoms, testing issues and other answers by Andy.


Part 1 lasts about 9 to 10 minutes (What are the Symptoms plus other answers by Andy)


Part 2 lasts about 9 to 10 minutes (What are the testing Issues and other answers by Andy)


Part 3 lasts about 9 minutes (Questions from Callers and answers by Andy)

The 3 stages of Lyme

There are three stages of Lyme Disease.

The first stage of Lyme Disease is called the early localized infection. This stages happens immediately and can last up to about the 4th week after the tick bite. Some people infected get what's called a bulls eye rash. The technical term is called Erythema Migrans. A lot of Lyme patients call it the EM rash. It is very important to point out that not all that are infected with Lyme get this rash. It's also important to recognize that the EM rash could be hidden in the scalp area underneath hair. When you are bitten by a tick, it's important to do daily checks with a mirror to check all hidden areas for unusual rashes. If possible, have someone check your scalp too.

In the first stage of Lyme, it is possible to get several symptoms. Some get flu-like symptoms with or without the rash. The lack of energy seems to be the most common symptom and a lot of people ignore this extremely important symptom by thinking the lack of energy is caused by something else (working too hard, playing too hard, staying up too late, not getting enough sleep and the list goes on). Some other symptoms that may appear in the early localized stage are headaches, stiff neck, fever, chills, muscle and/or joint pain, and swollen lymph nodes. In some occasions, people may not even notice a single symptom during the early localized infection stage.

When Lyme Disease is not detected or treated right away when early symptoms arise, the infection may (and often does) spread to multiple systems in your body in the early disseminated infection stage. This can happen almost immediately around week 4, depending on your immune system, to the 4th month. The infection could cause problems with the skin, joints, nervous system and heart within weeks to months of the initial infection. Symptoms that may appear during the early disseminated stage are rashes, tiredness, pain, weakness, numbness, paralysis in the face, recurring headaches, fainting, inability to concentrate, memory loss and rapid heart beats.

If the Disease isn't treated properly and swiftly, Lyme turns into a Chronic Infection called Late Persistant Infection. Damage can be done to the brain, nerves and joints months to years after the initial infection. You may have swelling and pain in the joints, numbness, tingling, severe fatigue, neurological changes, sleep disturbances, problems speaking, chronic arthritis, problems of the heart and difficulties with your nervous system.

WebMd

It is important to get treated right away because as you can see within months of a tick bite things can get really serious really quickly. If you aren't aware of your tick bite, physicians look at all the problems seperately and often patients are sent on a wild goose chase.

Tick Borne Illnesses

Ticks can carry things other than Lyme Disease. Website Information: Click on each name of Tick Borne Illness and you will find a website about each illness.

Babesiosis: This is an infection that comes from the Western Black-legged tick and the black-legged tick and possibly mosquito. There are arguments between physicians about whether other ticks can carry this illness as well. The symptoms of Babesia may include: fever, chills, fatigue, headache, muscle pain, jaundice and anemia. This disease can be fatal for the elderly and those without spleens.

How does the tick transmit Babesia? Well, the tick gives cells to it's host. Once that cell enters the red blood cell of the rodent. It then begins producing a new type of cell and the tick takes back those bad cells. Those are fertilized in the gut of the tick and develop into the tick's salivary glands. It's introduced into the human upon inoculation at the bite of an infected tick. The same kind of phase happens again only into the humans.

Colorado Tick Fever: This is a viral disease transmitted by the Rocky Mountain wood tick and the Pacific Coast tick. The symptoms may include: high fever, chills, severe headache, muscle aches and sometimes a faint rash that lasts a week or less. Complications of this infection include encephalitis, heart problems and severe bleeding. First signs of symptoms can occur about 3–6 days after the initial tick bite, although it can have incubation periods of up to 20 days. Patients usually experience a two-staged fever and illness which can continue for three days, diminish, and then return for another episode of 1–3 days. The virus has the ability to live in the blood stream for up to 120 days; therefore coming in contact without proper precautions and the donation of blood are prohibited.

Ehrlichia: This is a bacterial infection that is transmitted by the American dog, brown dog, lone star, black-legged and Western black-legged tick. The symptoms may include: fever, malaise, headache, chills, severe muscle aches or pain, vomiting, anemia, lung infection, decrease in white blood cells, elevated liver enzymes and neurological symptoms include seizures, meningitis, confusion, ataxia, cranial nerve palsy, and decline in mental status. This can be fatal if treatment is delayed.

Relapsing Fever: This is a multi-system disease transmitted by soft tick. Symptoms include: bouts of fever and chills, headache, muscle and joint pain that alternates with the fever. The infection can be detected during the fever stage. It one species of Borrelia. There are 36 species of Borrelia. 12 can cause Lyme ... this particular Borrelia (Borrelia Recurrentis) causes Relapsing Fever.

Rocky Mountain Spotted Fever: This is most prevalent in the eastern U.S., but has also been reported all across the nation. The Rocky Mountain wood, Brown Dog Tick, American dog and Pacific Coast ticks transmit the disease. Rickettsia is a similar disease with similar symptoms. Symptoms include: Flu-like aches, headache, chills, confusion, light sensitivity, high fever, a reddish-black measles-like rash that may spread over the entire body. This is fatal if proper treatment is delayed.

Tick Paralysis:It is the only tick illness NOT caused by an infection, but caused by a toxin in the saliva of a female tick and is potentially fatal. Rocky Mountain wood, American dog and lone star ticks can transmit this disease. Symptoms include: headache, vomiting, general malaise, loss of motor function and reflexes, paralysis in the lower body that spreads to the rest of the body. Respiratory failure and death can occur and young children can die in one or two days after being infected.

Tularemia: This bacterial infection is transmitted by the American dog, lone star, Rocky Mountain wood, Pacific Coast tick as well as deer flies and contact with infected animals or contaminated water. Symptoms include: repeated bouts of severe fever, swollen lymph nodes that can develop into skin ulcers, conjunctivitis and pneumonia.

More information:

All of the above infections can be transmitted by ticks in the nymph stage. In the nymph stage, ticks are very tiny, which means that it is possible that no tick will be seen. If the individual has been in areas where wildlife frequents, ticks in all stages of development are present. If the individual has dogs, the possibility of infection from incorrectly removing a dog tick exists.

Fleas from small mammals like mice, squirrels, chipmunks can also transmit tick borne diseases. Blood transfusions are also possible sources of transmission. So someone who has no history of outdoor activities can have one of the above infections.

Lyme Testing

This is very difficult to understand. I apologize for that. I still don't understand it all. Try to get through it and read down to the bottom of the post. This is very important and sort of explains the complexities of Lyme Tests. Testing for Lyme Disease is very controversial because of the inaccuracies of the test results.

First, the most common testing that Primary Care Physicians order to test for Lyme Disease is called the ELISA which stands for Enzyme-Linked Immunosorbant Serum Assay. The office will draw a blood sample. Then the blood is tested for antibodies that our bodies produce in response to being introduced to the Borrelia burgdorferi (Bb) (aka the Lyme Bacteria). In one study that I found, they tested 516 labs. In those 516 labs, 55 percent of the results were inaccurate. How would you feel if pregnancy tests were only 45 percent accurate? Those aren't exactly a reliable results.

How do they run the ELISA test? Well, they take different parts of the Lyme bacteria and break it down into segments and then add the patient's blood. Any antibodies that are in the blood will bind to the different segments of the Lyme bacteria. The segments will change color and it will be diluted until there is no color. At this point, they will give a dilution ratio. One Part Serum to how many parts of water they had to use to make it have no color. 1:256 (would be 1 part serum to 256 parts water). When you receive your results, it will give one of three options. Your results will be either positive, negative or indeterminate. Indeterminate means that your blood hadto be diluted too much to be called a negative, but not enough to be called a positive.

For more information on the ELISA test and other tests:

Lyme Literate Medical Doctors (LLMD) generally order a second kind of Lyme test called the Western Blot. There are several labs that can run the Western Blot, but a true LLMD typically uses IgeneX from California. The controversy in this is that IgeneX test uses more "bands" than a regular lab would use. When you receive your test results from IgeneX, you will receive two kinds of results. One is called the IgG and the other is called IgM.

You will note a bunch of different "numbers" with kDa next to it. Some of the numbers will even show a double star (**) next to it and kDa stands for Kilo Daltons.

When the labs are determining your test results, they see something like that this:
Photo Courtesy of IgeneX



As you can see, some areas (called bands) are dark and some are very light and others aren't there. Some of the bands are Lyme specific and others aren't. Out of a possible 25 bands, only 10 are reportable. So 15 bands are automatically thrown out. Out of the 10 bands that are reportable, 5 must be positive on the IgG to be considered positive in the CDC (Centers for Disease Control).

For the IgM to be considered positive, 2 out of 3 specific bands must be positive. It wouldn't matter if 8 of the 10 bands were positive, if two of those bands weren't specifically 23, 39, 41 then the CDC would say you had a negative Western Blot test. 23, 39, 41. Obviously, this is highly controversial in the medical community.

For the IgeneX IgM results, you would have to have 2 of the double star numbers with a plus in order to be positive. For the CDC results to be positive, you'd have to have 2 of the BOLDED NUMBERS to be positive. Your actual results would be not bolded, I'm just bolding them here for you to see.

The test results you see from IgeneX may look like this:

IGENEX IGM RESULT: POSITIVE
CDC/NYS RESULT: POSITIVE

18kDa: ++
22kDa: -
**23-25 kDa: +
28kDa: -
30 kDa: +
** 31kDa: -
** 34kDa:-
** 39 kDa: IND
** 41 kDa: +
45kDa:-
58kDa:-
66kDa:-
73kDa:-
** 83-93 kDa: IND


When looking at the IgG results, it's even more controversial. For the Igenex test results to be positive, two or more ** (there are six of them) numbers have to be positive. For the CDC test results to be positive, FIVE of the bolded numbers (there are ten of them) have to be positive.
In the following sample, if one of the IND had been + instead, the results would have been IgeneX IgG Positive and CDC IgG negative.

IGENEX IGG RESULTS: NEGATIVE
CDC/NYS RESULTS: NEGATIVE


18kDa: -
22kDa: -
**23-25 kDa: -
28kDa: -
30 kDa: -
** 31kDa: IND
** 34kDa:-
** 39 kDa: IND
** 41 kDa: ++
45kDa:-
58kDa:-
66kDa:-
73kDa:-
** 83-93 kDa: -

I hope this helps clear up questions regarding Western Blots & ELISA's.

Tick Removal

It is important to take the necessary precautions to help prevent any tick borne illnesses by using small pointy tweezers and grasping the tick as close to the head as possible and pulling straight out without yanking. It is always a good idea to keep handy a tick kit including small pointy tweezers preferably with attached magnifier, non-latex gloves, small pencil, alcohol prep pads, zip lock bags, tick identification and removal information card.

1. It is important not to touch the tick when removing it so avoid handling ticks with uncovered fingers. Use tweezers designed for removal. If you absolutely must use your hands, protect your fingers with non-latex gloves, plastic or even a paper towel.

2. Take the tweezers and place them around the area where the mouth of the tick enter the skin.

3. Using a slow steady motion, pull the tick away from the skin. Be careful not to jerk, crush, squeeze or puncture the tick.

4. After you remove the tick, place it directly into a Ziploc bag or other sealable container. Wash the area around the site of the bite with soap and water. Use an alcohol pad to disinfect it even further.

5. If possible, keep the tick alive for a month in case symptoms of a tick borne illness develop. Place the tick in a labeled, sealed bag with a lightly moistened paper towel. Label the bag with the date of the bite and the patient. For your own protection, tape around the Ziploc part of the bag to prevent the tick from exiting the bag.

Photo courtesy of "Georgia Faces" (The University of Georgia College of Agriculture and Environmental Sciences)

Jennifer ~

The Tick Lady

P.S

It is important not to twist or unscrew the tick out because you could wind up leaving the head inside your skin. Also it might irritate the tick and cause the the tick to regurgitate it's stomach contents into you (which is also why we place the tweezers as close to the entry as possible in order to avoid the abdomen of the tick)