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Writing an article on Lyme disease is a controversial endeavor. You probably didn't know that when you wrote your article--I certainly didn't know that fact until I was diagnosed with Lyme disease over a year ago.

I'm not sure where to start so I am going to break my comments up into two separate parts--factual and personal.

If you got your facts from the Center for Disease Control (CDC) then the facts are misleading

While the CDC refers to how many people have Lyme disease (LD) that is misleading in itself. When most people use the term Lyme disease they are not just referring to one type of bacteria--Borrelia burgdorferi--but also LD co-infectors. The CDC states that, ``several tick-borne diseases have been recognized in the United States, including babesiosis, Lyme disease, and ehrlichiosis (CDC--http://www.cdc.gov/ncidod/dvrd/ehrlichia/Index.htm).''

As the CDC says on its own web site, ``A skin rash resembling erythema migrans has been associated with bites by Amblyomma americanum, the Lone-Star tick, but apparently, the rash is not the result of infection with B. burgdorferi (44,45). Patients with such erythematous rashes might be mistakenly reported as having Lyme disease (46). A. americanum ticks are primarily found in the south-central and southeastern United States and are not a competent vector of B. burgdorferi (47,48).''

This does not mean people bitten by the lonestar tick are not going to get sick with a bacterial infection--it just means it is a different bacteria infection than LD. The CDC is calling this vector bacteria transmitted by the lonestar tick the Southern Tick Associated Rash Illness or STARI. Interesting enough less than one third of the people that get any kind of LD remember a rash. They also refer to STARI as Master's disease after the doctor that isolated its source several years ago.

I don't know why the CDC doesn't educate the public about tick-vector disease. In 2001 , Public Law 107-116 asked the CDC to fix the misuse of its surveillance criteria for diagnosis, which, as the bill said, is causing massive suffering. The CDC has never done more than the smallest amount to meet this requirement. There are many ideas and conspiracy theories as to why the CDC does not do more for people suffering from Lyme disease--to explain the actions and motives of the CDC is not my goal in writing to you.

Many insurance companies insist that Lyme disease should be treated with 30 days of an appropriate antibiotic and then the patient is cured. However, doctors in the field working with patients with LD know this will not cure many people. Also people who appear cured will have reoccurrence of symptoms associated with LD when they are under mental or physical stress. Often times insurance companies will remove a doctor from their provider list or pursue having the doctor lose his medical license for treating people for more than one month with antibiotics for LD.

The following URL (http://www.cdc.gov/ncidod/dvbid/lyme/Lyme_map_2000.htm) illustrates where LD is found in the U.S. Notice the increase of people diagnosed in the Charlotte area of South Carolina? That is because the Jemesik clinic in Charlotte takes insurance and treats LD. The reason, in my opinion, the difference of diagnosis is not a lack of LD victims--but a lack of knowledge on the part of the medical community to recognize the symptoms of LD. Doctors here in the southeast don't know about LD and aren't interested in learning--they are so confident that we don't get LD here. Yet we have fragmented forest, deer, and mice--the environmental factors needed to produce LD.

LD is a disease that is a first cousin to syphilis. Like syphilis it can not be eradicated with a months worth of antibiotics. LD is a sprocket shaped bacteria that passes the blood brain barrier (BBB). That means people with LD are going to have a change in mental function as well as physical ailments. This symptom can be as innocuous as brain fog but can also include hallucinations and unexplained rages. LD cause great fatigue. It causes the body to attack itself trying to kill the Lyme bacteria. Often the body will attack itself in the from of thyroid disease or other autoimmune diseases. People with chronic fatigue, Lou Gehrig's, Parkinson's, MS, fibromalga, arthritis, mono (Active Epstein-Barr) -- the list goes on and on -- may be misdiagnosed when they actually have LD. One reason is because the bodies immune system becomes so broken that victim's bodies can not fight off other diseases. Also alzheimers and Lou Gehrig;s Disease and others may just be late stage LD.

Most with LD also have one of the LD co-infectors I talked about previously. Many victims have an array of mental illness from ADD, depression, Lyme rages to hallucinations -- did you see Parade Magazine reporting on Amy Tam and her struggle with LD? Author Rebecca Wells, who wrote the ``Divine Secrets of the Ya-Ya Sisterhood'' also has LD.

LD clusters in families. Once one member is diagnosed others are soon to follow. Many people believe that LD can be transmitted sexually and through mother's milk and the placenta. Many times people with LD are fat--I have heard several exclamations: thyroid dysfunction, the LD keeps the body from processing sugar correctly by the body and that the body is trying to protect the major organs from being effected.

Concerning diagnosis people who believe they have LD should begin with the western blot test. Other test like the ELISE are just as effective as flipping a coin--and the coin is cheaper. Even the CDC says there is no test to diagnose LD--LD is a clinical diagnosis. The biggest indicator is if you take an antibiotic and then feel like you have hit a brick wall a week later. That is the bodies reaction to the antibiotic killing the bacteria ketes. When killed the bacteria releases toxins and histamines causing extreme fatigue and pain creating the Jacob Herximer reaction in the body. After several months of treatment the bacteria will go into hiding in the body inside cysts. This may also happen when someone has a strong immune system, but when the victims immune system weakens the spiro ketes will come out of the cysts having multiplied and stronger. The ketes are now coated in the cells of the victims own body so the haggard immune system can not recognize the bacteria to kill it. Often times the body will then attack itself at this point creating an auto-immune disease.

I am sorry I am not backing all my facts up with specific origins--but I haven't written a term paper in many years! Much of this information is the result of four months of research. You see I didn't really care that my husband and I had LD--we were being treated and life would move on. It wasn't until my children were diagnosed that I have learned all I could about this hidden epidemic.

On a more personal level--I was raised on the Tennessee River--around a mile from BLANK. I like to think of myself as a blue-blooded hillbilly--I am the first generation out of the mountains. However, I am the third generation to go to college--we are not ignorant people. Like many people with an Appalachian heritage I was raised to work hard, never be sick, and not to ask anyone for help.

All of these things have been taken from me and my family as my husband, then me, and now both my children have been diagnosed with LD.

We don't want to be sick. I honestly was really raised to ignore all illness until it went away. It wasn't until I became pregnant with my first child that my health began to falter. I believe I have had LD since I was a little girl--but the stress to my body with my first child set my body in a domino effect to fall. By the time I had my second child my immune system was in failure. First, I was diagnosed with thyroid disease, then Active Ebstein-Barr, and finally LD.

My husband is from Chattanooga, went to BLANK and was a collegiate swimmer and active outdoors man as a young man. But he seemed to be old before his time. I had been searching for years for a doctor to diagnose my husband--I knew he was sick--constantly tired, over-weight with arthritic pain, and depression--but doctors only wanted to give him an anti-depressant and send him home. My husband thinks he was infected as a Boyscout (Eagle Scout) while camping and canoeing in the great lakes area as a teenager.

Both my children were sick as small children with multiple bacterial infections and thriving issues.

We are proud people but this disease and the CDC's stance on LD has brought my family to our knees. We didn't know when we were diagnosed with LD that it was a controversial disease at all. Since we look O.K. no one helps us with errands or meals. Friends, family, and neighbors can't see pain and fatigue. They think we are malingers. Now, we have been told by friends and family members that "people in the southeast don't get LD." My brother sent me to Quackbuster.com--where the website listed people with LD as being antibiotic seekers who pretend that they are "herxing" when suffering from the Jacob Herximer reaction. I promise, my four-year-old neither knows or cares about the controversies surrounding his ailment--but he does "herx." My brother has even refused to look at my families Western Blot tests--he is so sure we don't have LD that he refuses to see any of our proof. Because of the CDC my pediatrician refuses to even look at my children's Western blot test because of this opinion. My pediatrician even refused to treat or test my nephew with antibiotics when my sister took him in with a tick bite and bullseye red rash--and she had the tick! People and doctors in the southeast are just ignorant of LD and the horrible effect it has on people. Not only does the public need to be informed--but so much of our medical community needs to be educated--and the CDC is asleep at the wheel.

My husband and I are making about half the amount we were making two years ago before starting treatment. I lost my high paying job as a BLANK for a government facility (I just thought I couldn't keep up the pace) and now I work in a BLANK. Some days it is all I can do to do a good job here. Unlike many disease, with LD the treatment is often worse than the disease.

If you learn about LD you soon find out that it clusters in families. I believe with all my heart that I gave my children LD either through the placenta or breast milk. Scientist have found LD in breast milk, the placenta, and sperm--but the CDC ignores all this information. My oldest child was born with a "droopy lip." I asked my pediatrician at my babies six-week well-baby exam why his lip drooped. My doctor said he was sorry that my child wasn't symmetrical enough for me. Now I know my baby was suffering with Bells Palsy--a common first symptom of stage two LD. Perhaps the reason that LD is spreading is also due to sexual contact. My doctor asked me if I would have married my husband if I knew he had LD. But I remember having titinitius as a small child and other LD symptoms. I believe we both had LD when we meet.

I didn't believe I had LD until I took a sleep test. It was found that I was waking up 233 times a night. Half the time from pain and the other half from sinus problems created when the bacteris was killed. It turns out I am such a touch woman I was mentally ignoring the pain from the LD during the day--but I didn't have that capacity when I was asleep! I was getting little or no REM sleep. I now have a CPAP machine and getting that device was when I turned the corner health wise. Now with a load of anti-histamines and pain medication I get some REM sleep.

My doctor treats my family with the pulse method of attacking LD. I take an antibiotic once ever 28 days--the estimated time of the reproduction of the bacteria. This way my husband and I can continue to work and we stay under the radar of our insurance companies. My doctor, like many doctors--has never reported my families LD to the health department or the CDC. Doctors live in fear of loosing their license if they treat people for LD.

I love this region with all my heart. This is where my people are from and where my children will be raised. I feel an incredible connection to the land and the people. I know by writing this letter I am exposing myself to ridicule. But if even one person gets tested for LD then it is all worth while. So many people need your help--would you write a story about the plight of people with LD? Your story could be the first brick to fall from the wall of silence and disbelief that surrounds this silent epidemic.

God bless you,
Linda

All help is welcome!

Just email me.

You're a brave person to take on the CDC

I didn't know that many LD patients are fat-I never had weight problem but have gone from 130 to 150 lbs (height 5'5") since Lyme got really bad.

I wrote a much shorter article-see topic Pick your Brain- tried to cover my butt and catch attention

Editing wise, just take a look at your SLEEP section where I think you meant to say "tough" woman (not touch). Also, where you have malinger, it is correctly spelled malingerer. Medically and grammatically I think you have done a great job.

Content-wise, you have written a very thought provoking piece that would make a great article, in my opinion. You state the facts without making them seem overstated and describe the reality of Lyme in a very down to earth, reasonable way, without sounding too much like a crusader...just a person who needs this to be understood and heard, because so far so few have listened. Have you thought about submitting it to a magazine or newspaper in addition to addressing the CDC?

Just for your own knowledge...all that you state about the South not being well informed of Lyme is just as true here in the North, even though this is supposedly Lyme Country. Here we have the problem of doctors saying "just because you live in New England doesn't mean you have Lyme disease", as if we are all using it as an excuse for our symptoms!

Guess no matter where you are from, until doctors look more closely at the facts and pay more attention to their patients, we will continue to have problems everywhere.

My personal story is somewhat pathetic, since I live in New Hampshire (a common state to contract the disease), had a bullseye rash that my doctor saw (but he did not know what it was at the time), finally had a Lyme titer at the advice of another doctor which came back POSITIVE, he did not believe the test could really be positive so he retested me and got a SECOND positive, then.....told me it was too late to treat Lyme disease if it was not treated within two weeks of the bite, so he didn't. He told me that it had done whatever damage it was going to do and I would have to live with it.

It was not until 16 years later that a LLMD (who happened to be seeing me for something else entirely!) caught on to the huge error in judgement of my original physician, retested me and got my THIRD positive, finally starting me on treatment.

This is in New England. Home of Lyme Disease. How on earth could this happen? "People in New England are all looking to blame Lyme for everything". How will you all in the South or West ever be treated correctly when your doctors are even less informed?