Struggle with lyme disease

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jul 24, 2006.

  1. tansy

    tansy New Member

    Terre Haute woman shares struggle with Lyme disease

    By Howard Greninger
    The Tribune-Star

    At first it was the fatigue, then came severe migraines, followed by body aches, swelling in her feet, ankles and hands. Eventually, depression and memory loss settled in.

    Melissa D. Mason struggled for three years to discover her affliction, often fainting for no apparent reason. She gained 90 pounds.

    “I went in and out of hospitals with tests and saw doctors. I even went to the Mayo Clinic [in Minnesota] for two weeks,” Mason said.

    Then, in February, Mason said local physician Dr. Charles French recognized similar symptoms in a case involving a nurse practitioner at his Brazil office. French suggested one last test for the 35-year-old Terre Haute woman. It proved positive — for Lyme disease.

    Spirochetal bacteria Borrelia burgdorferi cause Lyme disease. According to the Centers for Disease Control and Prevention, the bacterium is found in mice and deer and is transmitted to deer ticks, Western black-legged ticks or bear ticks, which then carry the disease.

    The skin is affected first, then joints, nervous system and, if untreated, other organs.

    Within three to 30 days of being infected, about three-quarters of Lyme disease cases start with the appearance of a round, red, “bull’s-eye” skin rash around the tick bite, then fever and headache, according to the CDC.

    In children, Lyme disease causes a lack of attention and loss of math and reading skills, Ryser said. Children also develop abdominal pains and changes in their personality and behavior.

    Lyme disease was discovered in 1975 after a mysterious outbreak of arthritis in children near Old Lyme, Conn. In 1982, the bacteria that causes the disease was isolated by Willy Burgdorfer, a tick-borne disease expert in Hamilton, Mont.

    A regimen of various antibiotics is the prescribed treatment.

    For Mason, the medicine must be administered intravenously. She began her treatment May 11.

    For more than two months, the daily routine has been the same: a three-hour I.V. drip, starting at 7 a.m., then a second two-hour intravenous treatment that begins at 4:30 p.m.

    “I get tired easily and sleep a lot more after some treatments,” she said.

    Mason must maintain the routine through August at the Health Center of America, a treatment clinic in Kansas City, Mo.

    She is under the care of Dr. Carol Ann Ryser, who specializes in the treatment of chronic illnesses such as diagnosing and treating Lyme disease, chronic fatigue, fibromyalgia and hypercoagulation defect, an inflammation due to Lyme disease.

    Each year the Kansas City center treats 500 to 700 patients for Lyme disease. The majority of people are prescribed oral antibiotics. Just 10 percent of the patients require intravenous treatments like Mason, Ryser said.

    Mason’s immune system had been severely weakened by Lyme disease bacteria, and because of that, she required the longer-term I.V. therapy, Ryser said. After August, Mason will begin taking oral antibiotics.

    Mason, who worked in a Terre Haute clinic drawing blood until she became too ill, said she had to have her thymus gland removed last year because it was enlarged three times its normal size and was putting pressure on blood vessels behind her heart and lung. The thymus aids the body’s immune system.

    In addition, Mason said, she suffered a mild heart attack in October from the effects of the Lyme disease.

    Mason does not recall seeing a bull’s-eye rash, yet Ryser found a bite with a bull’s-eye rash on her right cheek. That, Ryser said, allowed the bacterial infection to spread quickly. Ryser said a test at the University of Kansas confirmed that Mason suffered from a lack of oxygen to the brain, another result of Lyme disease.

    Mason already has taken two different types of intravenous antibiotics.

    “We rotate them based on the cycle of the Lyme, which changes forms and goes through different cycles,” Ryser said. “You have to outsmart it, rotate the antibiotics and antifungals to treat the spirochetes. When treated with antibiotics alone, it goes into a cell-wall-deficient organism, which is not recognized by the [body’s] immune system, and antibiotics cannot get in. So she [Mason] has been on [antibiotics] Premaxin and Clindamycin and she will be on Rocephin and antifungals,” Ryser said.

    The disease’s covert nature makes it especially hard to detect.

    “That is why this is such a difficult disease, both to find and to test for, because as much as 70 percent of the time the body can’t find it due to the cell deficient wall and the spirochete is in a plasmorphic form. It doesn’t have an antigen that the immune system can recognize,” Ryser said. “A lot of testing is related to an antibody, so it can be missed as much as 70 percent of the time.”

    More accurate are fluorescent antigen tests, Ryser said, plus polymerase chain reaction (PCR) used to detect Borrelia DNA in the blood.

    Lyme disease, like syphilis, passes through the blood and can be transmitted to a baby during pregnancy, Ryser said. There are eight strains of Lyme bacteria, Ryser said, and each responds to different treatments.

    Mason is on a special low-carbohydrate diet that avoids transfat and white sugar but is rich in fruit and vegetables, Ryser said. The patient also takes anti-inflammatory nutritional supplements to help liver and gastrointestinal functions.

    The treatments are working, Mason said, but not without a price.

    She must rent an apartment near the center to live in between treatments at the clinic, and she is very limited in what she can do. Her family, Mason said, is keeping her going. Her parents, Paul and Connie Mason, and her grandmother, Billie Kirchner, each take turns spending weeks with her, providing food and company.

    When they aren’t with her, Mason gets daily calls from her mother and her father, who is a Vigo County commissioner, plus cards, letters and telephone calls from her brother, Travis Mason, and his family.

    “Being here is good and it’s making me feel better. I also have treatments twice a week to detoxify me in addition to antibiotics. I’ve lost 20 pounds and have no more swelling,” Mason said.

    “I appreciate things that I took for granted before, like daily time with my son. Even just to ride a bike, and I appreciate my [phlebotomist’s] job because it is very boring when you’re here because you can’t do anything.”

    Mason said she cannot lift more than 2 pounds with her right arm because of the device used for the intravenous treatments.

    The hardest part, though, has been the time away from her son, Mason said.

    She couldn’t attend 18-year-old Caleb Drake’s high school graduation in May. After graduation, her son entered the military and will graduate Friday from boot camp at Lackland Air Force Base in Texas.

    “It was terrible,” Mason said. “I missed the first three biggest things that have happened to him in his life right now. I’ve talked to him since he went to boot camp and he wants us to write letters. He wanted to make sure I was OK. He didn’t expect me to be there” as he completes boot camp.

    Mason said, “I look at the calendar every day and say, ‘Oh, is it that much further until August?’ When I get home, I’ll have to try to get back to everyday life where I cook my own breakfast and supper and do my own laundry. I know it will be hard for me to go outside and do anything. I will always be scared of being bitten by a tick. I will never overcome my fear of ticks.”

    Howard Greninger can be reached at (812) 231-4204

    Diagnosing, treating disease often very difficult

    Two Vigo County women know first hand the affliction that Lyme disease can cause if not immediately treated and how difficult the disease can be to diagnose.

    Before 1983, Vigo County resident Connie Lawrence, 63, did not know that ticks transmitted the disease. That changed after she was diagnosed and treated for Lyme disease in 1989.

    Tammy L. Mundy, 39, a nurse practitioner who works in Brazil, thinks a tick bit her at age 6, when she spent a week in a hospital.

    However, she did not have symptoms of Lyme disease until stress and surgery recently caused the disease to flare up. Mundy in April finished a three-month regimen of intravenous antibiotics.

    Mundy visited the same clinic as Melissa D. Mason, 35, a Terre Haute woman currently undergoing treatment at the Health Center of America in Kansas City, Mo.

    Lyme disease is found in mice and deer and is transmitted to deer ticks, Western black-legged ticks or bear ticks, which then carry the disease. The Centers for Disease Control and Prevention began monitoring Lyme disease in 1982.

    The incidence of Lyme disease rose 40 percent from 2001 to 2002, hitting an all-time high of 23,763 cases nationwide, according to the CDC. The disease started to be reported to the CDC by physicians nationwide in 1991. As of 2004, the latest data available from the CDC, there were 19,804 cases of Lyme disease.

    The largest reported numbers are in New York, Pennsylvania, New Jersey, Massachusetts and Connecticut. Indiana had 32 cases reported in 2004, up from 21 in 2002, according to the CDC. The disease has been reported in every U.S. state.

    Lawrence vividly remembers her tick bite.

    “I was in Connecticut in 1983 when I got bit on my chest. I did have the bull’s-eye rash, which comes with Lyme disease, but I thought it was a spider bite,” Lawrence said. “You know, a brown recluse, because the look of the bite was round. My husband had been bitten by one years ago, so I just ignored it.”

    “We came home and I soon started getting what I thought was the flu. Then I could hardly move. One day I could move, then the next day I couldn’t. That went away for a while and I just ignored it,” Lawrence said.

    She would later go to a doctor complaining of pain in her knees and aching joints.

    “I went on for six years like that until I was probably suicidal,” she said. “I had headaches, nausea, loss of vision and could hardly move. I was a little wacko, to tell you the truth.

    “It was the worst experience of my whole life. I think the worse part was not knowing what was wrong with me or thinking I was crazy, which actually you do go crazy because it can get into your brain,” Lawrence said. “It makes you nuttier than a fruitcake. A lot of times you don’t lose weight, but gain weight, so you don’t look sick.”

    Lawrence was tested for Lyme disease after a friend, the same person she visited in Connecticut, called to tell her of an epidemic of Lyme disease in that state. Lyme disease was discovered in 1975 after a mysterious outbreak of arthritis in children near Old Lyme, Conn.

    Former Vigo County health officer Dr. Wayne Crockett finally had Lawrence tested, discovering Lyme disease. She was given antibiotics intravenously for six weeks, then 10 months of oral antibiotics.

    “I want people to know they can get better, especially if it is found in a few weeks. Not everyone gets the rash, like I did. Some will say we don’t have those Lyme ticks in Indiana, but wherever there are ticks, there is Lyme disease,” Lawrence said.

    Mundy began intravenous antibiotics in mid-January, finishing her treatment in April. She still takes oral antibiotics. She now is working as much as six hours a day, resuming her role as a nurse practitioner at a Brazil clinic.

    She started back to work slowly, working just four hours a week, and now hopes to be back on her job full-time by the end of this summer. “I have the good and bad days, but I still have a lot of fatigue,” Mundy said.

    Prior to her treatment, Mundy had severe headaches for the past five years that would leave her weak and numb on the left side of her body.

    “Also, the left side of my face would pull to one side like a Bell’s Palsy-type thing. That is a classic sign of Lyme disease, which I did not know before I was treated,” Mundy said.

    “I also had chest pain and would have episodes where I would almost pass out and my body would be paralyzed for about 15 minutes,” she said. Also, her legs and feet were going numb, changing color.

    Mundy’s sister, Kathy, previously had been treated for Lyme disease and had been treated with oral antibiotics. Because of that, Mundy said she decided to be tested for the disease.

    Mundy said her husband, Chris, and her 11-year-old daughter and 13-year-old son also recently have tested for Lyme and are taking oral antibiotics.

    “My goal is to definitely bring awareness to this area and make physicians more aware of this in Indiana. I think people do not know enough about this disease,” Mundy said.

    Howard Greninger can be treated at (812) 231-4204 or

    How Lyme disease is transmitted

    n From ticks: The Lyme disease bacterium, Borrelia burgdorferi, normally lives in mice, squirrels and other small animals. It is transmitted among these animals – and to humans – through the bites of certain species of ticks.

    In the northeastern and north-central United States, the blacklegged tick (or deer tick, Ixodes scapularis) transmits Lyme disease. In the Pacific coastal United States, the disease is spread by the western blacklegged tick (Ixodes pacificus). Other tick species found in the United States have not been shown to transmit Borrelia burgdorferi.

    Other Modes of Transmission

    --Person-to-person: There is no evidence that Lyme disease is transmitted from person-to-person. For example, a person cannot get infected from touching, kissing or having sex with a person who has Lyme disease.

    --During pregnancy & while breastfeeding: Lyme disease acquired during pregnancy may lead to infection of the placenta and possible stillbirth, however, no negative effects on the fetus have been found when the mother receives appropriate antibiotic treatment. There are no reports of Lyme disease transmission from breast milk.

    --From blood: Although no cases of Lyme disease have been linked to blood transfusion, scientists have found that the Lyme disease bacteria can live in blood that is stored for donation. As a precaution, the American Red Cross and the U.S. Food and Drug Administration ask that persons with chronic illness due to Lyme disease do not donate blood.

    --From pets: Although dogs and cats can get Lyme disease, there is no evidence that they spread the disease directly to their owners. However, pets can bring infected ticks into your home or yard.

    --Other transmission: You will not get Lyme disease from eating venison or squirrel meat, but in keeping with general food safety principles, meat should always be cooked thoroughly. Note that hunting and dressing deer or squirrels may bring you into close contact with infected ticks.


    Tips for preventing tick bites

    --Ticks prefer wooded and bushy areas with high grass and a lot of leaf litter. These are areas to avoid.

    --Take extra precautions in May, June and July. This is when ticks that transmit Lyme disease are most active.

    --If you do enter a tick area, walk in the center of the trail to avoid contact with overgrown grass, brush and leaf litter.

    --Ask your local health department and park or extension service about tick infested areas to avoid.

    --Remove ticks from your clothes before going indoors. To kill ticks that you may have missed, wash your clothes with hot water and dry them using high heat for at least one hour.

    --Perform daily tick checks after being outdoors, even in your own yard. Inspect all parts of your body carefully, including your armpits, scalp and groin. Remove ticks immediately using fine-tipped tweezers.

    --If a tick is attached to your skin for less than 24 hours, your chance of getting Lyme disease is extremely small. But just to be safe, monitor your health closely after a tick bite and be alert for any signs and symptoms of tick-borne illness.

    [This Message was Edited on 07/24/2006]
  2. kellyann

    kellyann New Member

    That is a great deal of useful information! I have lyme disease and it is a horrid, horrid disease! Thank you for trying to help keep people up to date on some of the current issues on treating lyme disease.

    Well done Miss Tansy!

  3. jarjar

    jarjar New Member

    Thanks Tansy this needs to be bumped as so many on this board were like me and hundreds of others thinking they had FM or CFS for years only to find out they are dealing with lyme.