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December 2000 - Volume 1 Issue 8
Monthly Issue

Editors: PSpatches, Lymechat, Borrelia s
Graphics: Kneely813
Assistants: LutzDM,CCcooks,ROWDEEGPSY

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The doctor handed her overweight patient a bottle of pills.

"Don't take these pills," she said. "Spill them on the floor

three times a day and pick them up one by one.


Although he was a qualified meteorologist, Hopkins ran up a

terrible record of forecasting for the TV news program. He

became something of a local joke when a newspaper began

keeping a record of his predictions and showed that he'd been

wrong almost three hundred times in a single year. That kind

of notoriety was enough to get him fired.

    He moved to another part of the country and applied for

a similar job. One blank on the job application called for

the reason for leaving his previous position.

    Hopkins wrote, "The climate didn't agree with me."

Kara Kyriaka Tyson (

Huntsville, Alabama
Cost: $12,000+ Out Of Pocket
Number Of Lost Work: Ongoing
# Of Years: 18 months


My name is Kara Tyson. I am 32 years old. In April of 1999 I was hiking on Monte Sano Mountain (a state park in North AL). 3 days after the hike I developed a red "bull's eye" rash. By the 4th day I was limping and had shooting pains throughout my left leg.

I was treated with steroids for a possible spider bite and the rash went away.

Six weeks later I started losing bladder control. Tests for a bladder infection were negative.

I was sent to my OB/GYN since my symptoms were those of a prolapsed uterus. My doctor prescribed Codeine which I took 24 hours a day just to endure the pain. Every time I took Zithromax I regained bladder control and no longer needed the Codeine. But after the 5 day regime wore off I was back in pain and had again lost bladder control. After many tests (everything from PID to ectopic pregnancy) my doctor recommended that I see a urologist.

The urologist visit was of no use to me. The urologist said that what I was describing didn't make any sense. He agreed to do some tests but could not schedule me for another month.

I began to spiral downward with no bladder control, a constant fever, falling asleep at work. Pains in the right leg. Pains in my back. Pains in the neck. I could not sleep at night. I could not wake up during the day.

I sought medical attention (this time from a local clinic run by Huntsville Hospital) and I was told that I was "depressed." Not only that....I was in the "denial" that I was "depressed."

I am a former burn patient. I lost my children in a house fire in 1995. I spent nearly a month in the UAB Burn center being treated for burns over 60% of my body. I thought that the doctor would see that I was a very strong person not easily overcome by illness. Unfortunately, what was written in my file was that "Ms. Tyson is in need of physiological counseling. She has needed this for many years." Wow! That is an incredible diagnosis for someone who has known me for 10 minutes!! I objected, citing that I got better when I was taking antibiotics. I was told that that was just the "placebo effect."

I was now in pain and scared. My pain medication was running out. Since I was "depressed" who would give me antibiotics?? Getting antidepressants is easy in our society. Getting antibiotics is not. I was to the point that I would steal, beg or borrow what I needed.

I woke up every morning wishing that I was back in the UAB Burn Center because at least I would know that the pain would stop eventually. I asked God every night to let me die in my sleep I was in so much pain and could not get a physician to help me.

I did a search on the Internet of my symptoms. Two newsgroups came up. Prostrate & Lyme Disease. I knew the first was not my problem. The 2nd I almost dismissed.

Again I sought medical attention (from the same clinic) to be tested for Lyme Disease. I didn't know anything about the tests. Or what to ask for. I was given a simple ELISA. It came back negative. I was told by the receptionist that this was the only test for Lyme and that since it was negative I didn't have Lyme Disease. That their office had never had a positive Lyme Disease test.

I returned to the initial medical office where I was bitten by the "spider" to let them know that I thought I had Lyme. The nurse was very rude to me and rolled her eyes and said, "Did you see a tick?!!". I said no that I had not seen a tick or a spider. When the nurse left the room she shut the door with a smirk on her face. I could hear her through the door saying to the receptionist "She thinks she has Lyme Disease. Can you believe that one?"

In August (4 months after the bite) the Lyme Disease newsgroup recommended a doctor 5 1/2 hours away. I went to him. I was positive on the Western Blot test for Lyme Disease. I am also positive on the LUAT test (Lyme Urine Antigen Test). I had had a false negative on the ELISA.

I thought treatment would be so easy. It isn't. I am getting better. But it has been over a year and I am still sick. I have spent thousands of dollars out of pocket with no end in sight. I spend 36% of my annual income on Lyme since as a former burn patient I am unable to get health insurance.

I have a will of iron, but this disease brought me to my knees.

My greatest fear is that my hematologist will retire and that I will not be able to get treatment. I know that I am in good hands, but Lyme is a long battle.


Jim will not have a column this month. He has been ill for the past 3 weeks with arrythmias. He needs a lot of rest. He is under his doctor's care and hopefully will be back with us soon. Please say a special prayer for a speedy recovery. He is not only my pal, but a help to many of you who have written to him. Jim would like to send his personal Holiday wishes to all.



Long-Term Outcomes in Treated Lyme Disease

There is little data regarding the long-term outcomes of patients treated for Lyme disease. Reports of persons carrying the diagnosis have included Lyme disease patients with:
1. Recurrent, nonspecific symptoms of fatigue
2. Arthralgia

Despite formal recommendations that prolonged or repeated parenteral courses of antimicrobial therapy are contraindicated in this setting, occasional patients continue to receive such therapy.

A community-based, longitudinal cohort study was conducted in conjunction with the Connecticut State Department of Public Health (Seltzer et al, 2000).

A random sample of patients reported as having Lyme disease over 7 years was selected (n = 1325). Each patient enrolled in the study was matched with a control individual matched by age and area of residence:
1. Patients with a single erythema chronicum migrans (ECM) lesion at least 5 cm in diameter were classified as having localized disease.
3. Patients with early neurologic disease (cranial neuropathy, aseptic meningitis)
4. Cardiac disease
5. Serologic evidence of infection was classified as having early-disseminated Lyme disease.

Patients with arthritis, encephalopathy, or polyneuropathy were classified as having late-stage Lyme disease. Serologic evidence of Lyme disease was required for inclusion.

Of the 678 enrolled patients with presumptive Lyme disease:
1. 71 percent believed they were cured,
2. 9 percent believed they were not cured,
3. 20 percent were uncertain.

The proportion of patients receiving antimicrobial treatment was similar among patient groups who did and did not believe they had been cured of Lyme disease.

There were 212 age-matched controls enrolled. The overall proportions of patients and controls who reported increased symptoms or increased difficulties with activities of daily living were similar in the patient and control groups, except for more individuals in the Lyme group who reported joint or muscle pain or difficulty ability formulating ideas.

There were no significant differences between cases and controls on the results of the SF-36 questionnaire.

The proportion of patients reporting an increase in symptoms, and difficulties with activities of daily living was tabulated over years.

Most patients attributed any increase in symptoms to aging or other illness. Twenty percent attributed increased symptoms to Lyme disease.

Patients who attributed symptoms to Lyme disease believed that they were not cured by treatment.

The highest proportion of patients reporting increased symptoms was the group that did not meet study surveillance criteria. These patients tended to believe that they were not cured of Lyme disease.

There is considerable controversy regarding the long-term consequences of Lyme disease. Most patients do not attribute chronic symptoms to persistent Lyme disease.

The overall frequency of those nonspecific complaints among patients was similar to controls matched by age and area of residence.

Scores on standardized tests of health-related quality of life were similar in patients and controls. Among patients reported to have had Lyme disease who did not meet surveillance case criteria, three-fourths had nonspecific symptoms only.

Although patients with documented Lyme disease reported increased joint or muscle pain or difficulty formulating ideas with higher frequency, the relatively small difference between patients and controls disappeared if the p values were corrected for the number of statistical comparisons performed.

Possible limitations of this study:
(1) Serologic testing was not performed in controls (although seropositivity is low in the general population, and the significance of asymptomatic infection is unknown);
(2) Many patients could not be contacted due to insufficient contact information, but this was not likely to introduce a systematic bias into the study;
(3) Patient reports were used as follow-up rather than physical examinations; however, medical records were reviewed and outcome questionnaires completed to establish outcomes. The authors conclude that patients who have had Lyme disease exhibit generally excellent long-term functional outcomes.

John W. Engstrom, MD, Associate Professor of Clinical Neurology, University of California San Francisco, San Francisco; and Stephen L. Hauser, MD, Chairman and Betty Anker Fife Professor, Department of Neurology, University of California San Francisco, San Francisco

Seltzer EG et al: Long-Term Outcomes of Persons with Lyme Disease. JAMA, 283:609, 2000 [PMID 10665700]


This month's word Bull's Eye

Until it was outlawed in 1835, bull baiting was a major national sport
of England. Always, some put their money on the dogs, while others
preferred the bull. Just as present-day racing enthusiasts often put their
money on a horse's nose, British sports were prone to put a crown on the
bull's eye.
Since the coin equivalent to five shillings was roughly the size of an
eye on which it was wagered, it took the same name. Targets developed
for marksmen came to include a central black spot about the size of a
shilling. Using the sportsman's label to designate the coin-size spot, the
center of any target became it's bull's eye.

I guess that is why the Lyme rash is called the bull's eye,
shaped like a target.

By Borrelia
Stephen J. Nostrom R.N.,Founder/Director,Lyme Borrelia Out-Reach Foundation, circa 1987

Hello everyone, I'm back! A special "Thank you" to all who wrote during my illness. Your prayers, and words of encouragement were a great comfort to me. Being the object of illness is no fun! Having someone there with you during your illness can make a very positive difference. A BIG THANKS!!
I have always attempted to look at the bright side of every matter, no matter how terrible it may be, or seem to be. This can be difficult, especially when you are ill. One thing I reflected upon during my hospital stay and returning home was the following!

"Life Style Changes"

It has been said that "the road to hell is paved with good intentions." In my case, I was burning both ends of the candle and it finally caught up with me. That is, often, "we" tend to accomplish too much, spread ourselves too thin and as a result, hurt ourselves, physically, emotionally and mentally. We get ourselves "run-down"... and with a chronic illness, this is bad medicine.
We may need to "make changes" in order to be more productive presently and in future tense. The past eighteen months has landed me in the hospital on two occasions and to the doctors office no less than six times with "other" assorted illness.


In one word this means: Decay! It is an infection, contamination by an organism that enters the blood stream, and thus contaminates the entire body. The range of dysfunction that occurs with an infection is broad to say the least. The development of an infection depends upon exposure to that organism, and the degree of susceptibility, which is determined by the "effectiveness of the immune system." However, numerous factors influence the interaction between the microorganism (germ, agent) and the host and determine whether infection will occur.

Some of these factors involve the characteristics of the pathogen itself, whereas others involve the number of organisms (dose), the mechanisms of their entry and spread through the body, and the "resistance produced by the immune system." As I look back to the onset of my "sepsis" I learned some interesting things. I had had my teeth cleaned a few days earlier?

I was run-down. I had never had a problem after getting my teeth cleaned in the past. The "dose," there are many bacteria in the mouth, gums, oral cavity, and with a cleaning there are ruptured membranes that would allow possible infection to enter the blood stream. My immune system was also run down, the organism I contracted is often found in the mouth, the gut, and urinary tract amongst other places.

My point here: It may not be a bad idea to confer with ones MD and Dentist prior to any dental work, especially when dealing with a chronic illness such as Lyme Borreliosis! I also was on a medication that caused G.I. upset for high cholesterol. This irritated my stomach and bowel, thus another possible entry for infection, sepsis?

Infection refers to those diseases that produce dysfunction because of the presence of a living organism in or on the human body. The various microorganisms that cause infectious disease generally fall into seven categories. Within each group of organisms are those that always produce disease, those that live in the body for mutual benefit, and those that would cause disease if they were not controlled by the immune system.

Bacteria are unicellular organisms with a double cell membrane that protects them against many of the bodies defense mechanisms. Although they do not have a nucleus as human cells do, bacteria contain all the mechanisms required for maintaining life and for rapidly replicating themselves. They are called aerobic if they require oxygen and anaerobic if they survive only in an oxygen free environment.

Bacteria damage tissue by directly interfering with essential cell function or by the release of toxins that cause cell damage. In order for people to develop infection, they must come in contact with an infecting pathogen. Some pathogens are endogenous, that is, part of the patients normal flora. Now....when these normally harmless organisms escape the immune systems control or are transferred to another site because of lets say, surgery or other invasive procedures, they are capable of producing infection.

Those with PICCS, hep-locks, mid lines, central lines and even ports need to use aseptic technique "ALWAYS"! When showering or bathing, keep that dressing dry and if it gets wet, have it changed immediately!

Escherichia coli bacteria, are a major source of infection elsewhere in the body. Hand washing prior to infusions, dressing changes, flushes are imperative. While on the subject of washing, its a good idea to wash thoroughly, any and all fruit, vegetables, etc., from the market place prior to eating them, think about it!

Exogenous organisms are those that come from the environment, contaminated food, water, soil, air and animals. Hand washing is important! Gastroenteritis (AKA travelers diarrhea) are examples of infections obtained from contaminated food or water.

Dose! The number of organisms required to produce a disease varies widely. The larger the dose, the greater the risk of infection. Simply touching the end of a flush syringe and then flushing a line can introduce millions of bacteria directly into the blood stream resulting in serious infection. If in doubt, throw it out and use a new one.

For an invading pathogen to produce an infectious disease within the body, it must be able to overcome or bypass the general protective mechanisms that are part of the immune system. A peripheral and or central line provides a convenient entry site. Once inside the body, the organisms begin to produce rapidly. Because of the varying pathophysiologic processes of each pathogen and the fluctuating strength of peoples immunologic defense mechanisms, an infectious disease may take a variety of courses.


Once the organism has entered the body (incubation stage) symptoms usually appear. It can be a matter of minutes, to hours, to days, to weeks etc. Fever! head ache, muscle aches, chills, loss of appetite, and general loss of energy. These symptoms are clinical manifestations of the immune system's battle to control the organism. For ex. The fever is the result of interleukin-1 release by what are called macrophages, which changes the temperature , "set point" in the hypothalamus gland.

For the patient with a decreased appetite and decreased activity tolerance, small, frequent feedings may be better tolerated. Sleep and rest are mandatory! Hydration: The body needs fluid. Stay away from fluids containing caffeine as this is a diuretic and will cause the loss of fluid necessary to keep the body balanced.

Alcohol, will decrease the immune systems ability to fight disease, it will also act as a diuretic, and the loss of necessary fluids and may indeed nullify, certain antibiotic therapies, and may also interfere with other prescribed medications. In a nut shell, alcohol is your enemy! Always check with your Physician, Pharmacist about drug interactions, side affects, and O.T.C. drugs, that is Over The Counter medications.

Burning the candle at both ends will in the end catch up with you! As a result, you are setting yourself up for possible "serious" consequences! In closing, I wish all of you better health. Communicate with your Pharmacist/Physician and if there is a topic you would like to see addressed, please contact me directly @

My best to all of you...Stephen


Will Never End!

My heart is silver, Your heart is gold
Both equally valuable, I'm told

Together we make a wonderful pair
Always happy, never in despair

Friends are lovely to have always
Sharing and seeing wonderful days

Chatting and sometimes silly at best
One never thinks of the other as less

So if you are lucky and have found, such a friend
Keep them close and the friendship will never end

© Joynheart

Poetry by Joynheart


Chocolate Fudge
This is really special fudge it makes a great gift in small tins,
or wrapped in foil with a nice bow.
I make this only once a year it is so wonderful, everyone will go crazy for it. A true chocolate lovers dream and it always come out perfect. Don't bother with any other fudge recipe. This really is the BEST. Made with Hershey Milk Chocolate bars.
I know some of us watch our sugar intake ... but as I said it makes a great gift. I usually make biscotti the same day. I dip an end of them in a last of the fudge in the pan. :):) You could do it with any cookie as a real special treat.
1 cup of butter
4 1/2 cups sugar
7oz marshmallow creme (sm. jar)
1 can evaporated milk (12oz)
Add all ingredients in good size sauce pan,
over med. heat stirring until sugar dissolves. Bring to boil
Boil 7 minutes:
Time it! Seven minutes. :)stirring constantly
( great exercise and it smells good too)
remove from heat add:
1 Tbls. vanilla
In advance unwrap Hershey bars and break up put into a bowl with the chips so they are all set when you are ready to add them. Add chocolate and nuts to hot mixture keep stirring until blended it is thick.( more exercise)
8 1/2oz milk chocolate Hershey bars
12 oz semi sweet chips
2 cups nuts (optional)
I always lightly toast any nut before I use them brings out all the flavor.
Pour into buttered 9"x13" pan or (2) 9" square pans.
Here is an extra holiday special dessert for an on hand quick treat for any occasion.
Pear halves
topped with Andes after dinner mints, use 1 1/2 mints,
heat in the microwave ...a couple of minutes
til chocolate melts,
Top with vanilla ice cream or whip cream
this is so easy to make and it tastes divine. Great for unexpected company. You can use canned pears or fresh poached if you like.
Ho! Ho! Ho!
Sending good cheer!
Yours truly, Carla
CCCooks Ciao! Happy New Year! :):):) Peace & Joy 2 ALL!

If anyone wants to share a recipe to put in the column please do!
Click here.

Chat for Kids with Lyme
(All welcome)
Carla, LadyLymeChatter, is hosting a chat for kids
of all ages and parents too.
The chats are held on Monday evenings at 6:30 PM Eastern.
The chats are well supervised and are held in a private room.
Private Room Lyme Disease
Or Keyword: aol://2719:2-2-Lyme%20Disease
To join Carla's email reminder list, click below.

Kids' Lyme Chat

Lyme Chatters Reminder
The Daytime Chat is scheduled for
Wednesday, December 20th
Join us!
3:00 PM Est.
2:00 PM Central
12:00 PM Pacific
Click here to enter the room >> Private Room Lyme Disease

Hope to Ö¿Ö you!

Birthday Club!

If you'd like your upcoming birthday announced, let us know.
You don't have to tell us your age! LOL
My Birthday is

Dec. 19th.....Chete1.....Sandra
Dec. 22nd.....Seacastle2.....John
Dec. 24th.....JKE1548618.....Jackie
Dec. 31st.....NETKINGKOL.....Bonnie

Happy Birthday from the staff of Lyme Matters!

"Happy Birthday" chorus << Click here instant greeting

Happy Holidays!

We wish you health and happiness for the coming
New Year.

The staff of Lyme Matters


LymeNet - Advanced Topics in Lyme Disease (2000 Burrascano Treatment Gui

Dr. Burrascano Rally 2000


Holiday Links

Mom's Way

Christmas Trivia Quiz

Candy Cane

Letter from Mom

The Christmas Poem

A Christmas Wish for You

Ways to aggravate Santa

Santa Praying


Dips and Spreads

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