This newsletter will serve two purposes: To provide timely and accurate information regarding Lyme Disease and Lyme related issues, and to serve as a means by which members of the Lyme community can voice their opinions and concerns.
This is the monthly issue. You will receive weekly updates. If you choose not to receive them, there will be a link to unsubscribe on the first issue.
We welcome your comments and we'll do our best to accommodate any suggestions that you may have.
* A personal note of thanks to Carla (CCCooks) for coming up with the name for this newsletter, and to our subscribers for choosing it.
Some time in the 1980s in Alabama, I was bitten in the back of my head by a tick -- not a little deer tick but a large tick. A week later, I experienced the flu symptoms with the pounding headache so I went to the doctor. He put me on antibiotics for 10 days in case I had Rocky Mountain Spotted Fever.
In 1992, after having an infection of one kind or another each month for a year, I was in a doctor's office in New York and told him my symptoms. He said, "I think you have Lyme Disease" and gave me the name of a well-known Lyme Disease specialist. The first doctor ordered a Lyme test. I went to this specialist who only talked to me and said I didn't have Lyme Disease.
I tried to ask him questions about my symptoms and he repeated that I didn't have Lyme Disease. While still in NY State, I thank my lucky stars that I also went to a chiropractor who had Lyme Disease. I told him what had happened. He was pretty sure I had Lyme Disease and sent me to his doctor.
At this point, I believe I had two negative LD results. This doctor started treatment of two Zithromax and two Suprax a day based on my symptoms. He told me that if it was Lyme Disease, I would feel worse about two weeks into the treatment. Sure enough, I felt worse. Then I got better. I had to be completely symptom free for one month before I could go off the antibiotics. Well, I did all this.
In 6 to 9 months, my symptoms would come back. I would go back on the Zithromax and Suprax and repeat the cycle. This continued until 1995 when I was supposed to have 12 weeks of 1.2 million units of Penicillin shots each week. I got 5 weeks into the treatment and had a reaction so I finished the seven weeks with Zithromax and Suprax. I felt pretty good until 1997 when the symptoms slowly came back.
By the spring of 1998, I knew it was back full force. I started with an infection each month and was treated for the infection. My joints and muscles ached and the pain in my head on the left side was excruciating. My head hurt so bad that I couldn't think.
My local doctor sent me to an infectious disease doctor in September 1998. He tested me for Lyme Disease and it was negative. He told me he was sure I didn't have Babesiosis and didn't need to treat me for it. Then he dismissed me. I was very sick at this point and finally, my local doctor saw me and treated me for another infection.
In November 1998, I was back in NY and made an appointment with my Lyme Disease doctor. By this time, there were new tests and he ordered 5 tests to be sent to a California lab. Their results were that I have B. burgdorferi, Lepto-spiral spirochetes and Babesia. They put me on different antibiotics which caused a bad herxheimer. At this point, I had at least five negative Lyme tests.
Because I couldn't find a local doctor to work with the doctor in New York, I found a doctor who was 700 miles away who also has Lyme Disease.
I have seen him once a month for the last year. Yes, I have been on antibiotics for this past year and I can say I finally feel well. I don't know if it's even possible to be cured but I am so grateful for the help I have gotten. I have also seen a homeopathic doctor and have taken vitamin and mineral supplements this past year. Below were my symptoms. These came back each time I went off the antibiotics.
Dark circles under eyes
Lost use of right hand in 1992
Muscles and joints ache -- pain moves around body
Big toe hurt like gout
Pain in left side of head at a 90 degree angle from the top of my head
straight in from my ear
Warm areas that moved around my body
Memory loss (short term)
Lost my ability to spell
Unable to think or move
Pains on the skin that moved around
Different areas on my skin that hurt to be touched
Left eye feels like it is watering when it's not
Both hands turn inward involuntarily. When I realize they are turned, I straighten them out.
With antibiotic treatment, my Mitral Valve Prolapse, Dysautonomia and Hypoglycemia are better. All of these symptoms have gone away with antibiotic treatment.
Hello everyone! I hope that you are enjoying the warmer weather and looking forward to a beautiful spring.
This month we'll be discussing the different types of essential fatty acids (EFA's) which are needed by the body.
In addition, the Herb Corner will be covering the following herbs: chaparral, carrot, slippery elm bark and celery. As always, if you have any questions regarding any of the information contained within this column, please feel free to e-mail me.
Chaparral contains a substance known as nordihydroguaiaretic acid (NDGA), a powerful antioxidant, which is useful in preventing the formation of free radicals. Hence, there is some evidence that this herb may be helpful in slowing the aging process, and in preventing the growth of certain types of malignant tumors.
Chaparral is also useful in fighting parasitic infections, and is quite effective in treating urinary tract infections. It is an excellent antiinflammatory, which when used externally, helps to relieve the pain associated with illnesses such as rheumatism and arthritis.
Chaparral also functions as a natural diuretic, to rid the body of excess water. It can be used in either capsule or extract forms. Capsule: Use 1 capsule daily; Extract: Mix from 5 to 20 drops in water, up to 3 times a day.
*Caution -- Chaparral should not be taken internally for extended periods of time, as it may cause damage to the liver.
Carrots are one of the most abundant sources of carotene available. Carotene is a botanical (plant) form of vitamin A, which has numerous health benefits, including helping to lower one's risk for certain types of cancers.
Studies have also found that it may help to lower the high blood cholesterol levels associated with coronary artery disease. Carotene is useful in relieving heartburn and in aiding digestion. It can also be used to relieve diarrhea. It has always been associated with good eye health, because it permits the formation of a substance known as visual purple, which helps to not only strengthen the eyes, but also, allows for better night vision, by reducing night blindness.
Consuming carrot juice is an excellent way of obtaining your optimum daily allowance of carotene. There are a number of commercial preparations available, or if you have a juicer at home, you can simply make your own. Carrot soup can be made by boiling one pound of grated carrots in one cup of water, and then pouring it into a strainer. Of course, the simplest way of obtaining carotene is to munch on a carrot stick.
Please remember that carrots begin to lose their potency as soon as they are picked, so it is important to buy them as fresh as possible.
*Caution -- While there are no warnings regarding this herb, people using it should be aware that they may have, or may develop an allergy to carrot. Should you develop a rash or experience any other odd symptoms while using this herb, discontinue use of it immediately.
Slippery Elm Bark
Also known as red elm or moose elm, slippery elm bark is most helpful in relieving inflammation of the stomach, urinary tract, and bowels. Consequently, it can be useful in easing the pain associated with gastric ulcers.
This herb is also beneficial in treating flu and colds as well as the diarrhea which can accompany them. Because it contains tannins, it also helps aid the body's digestive process. Slippery elm bark lozenge preparations are available commercially. For relief, take from 1 to 3 lozenges daily.
*Caution -- While there are no warnings regarding this herb, people using it should be aware that they may have, or may develop an allergy to slippery elm bark. Should you develop a rash or experience any other odd symptoms while using this herb, discontinue use of it immediately.
This herb contains the vitamins A, C and B - complex, in addtion to the mineral iron. Celery seed extract and celery juice are wonderful natural diuretics which help to not only lower blood pressure, but also promote the flow of urine through the kidneys. This herb also functions as an antispasmodic, which helps to relax the body.
Moreover, it helps to expel gas and thus aids the body's digestive process, in addition to stimulating the appetite. Studies have shown that this herb may also be useful in relieving the joint pain associated with illnesses such as rheumatism.
Take 1 tablespoon of celery juice up to three times daily. Extract: Five to ten drops of celery oil can be mixed in an 8 ounce glass of water and taken twice a day.
*Caution -- Both celery oil and juice can be used to induce menstruation, so women should not use either of them during pregnancy.
***Caution should be taken when using herbal supplements. Many of these while harmless at their recommended dosages, can become dangerous when taken in larger amounts. In addition, some people may have or may develop allergies to an herb that has had no prior reputation for causing allergic reactions. If you feel that you need to increase your daily intake of a particular supplement, please speak with either your physician or someone who is knowledgeable with regard to pharmacognosy (the study of drugs derived from plants).
Until next month!
Jim : )
Please send me your Question
"The Neuropsychiatric Aspects Of Lyme Borreliosis"
*** "Part one of two parts" ***
The following is based upon thirteen years working with patients with Lyme Borreliosis. At times I will share "my own personal" experiences as a patient. I will also share what other patients have shared with me, those whom I have interviewed, and worked with as a registered nurse, together with "personal notes" I kept on self in a large journal, and input from my wife of thirty years, also a Lyme patient and a "psychiatric nurse" who cared for me in this "Unfolding Drama" called Lyme Disease.
Any and all names used are made up! Please also keep in mind that it is impossible to cover all the bases in a short news letter, however, I can be reached via e-mail with any questions as with any issue I write about, and will assist as best as I am able to.
Since Lyme disease is a multisystemic illness that can affect the central nervous system (CNS), in many patients, a variety of neurological and psychiatric symptoms may be experienced by the patient.
This can and does often become frightening not only to the patient, but also to the extended family, spouse, etc. Why? Because,"changes" in the patients "Affect," translated: A person's emotional response, may indeed "change" from the norm. The patient may all of a sudden begin to cry or laugh for no apparent reason, or begin swearing and in some cases become violent or vulgar, when this was not the case prior to the onset of the disease.
1. Anger is a condition in which the tongue works faster than the mind.
2. You can't change the past, but you can ruin the present by worrying over the future.
3. Love ......and you shall be loved.
4. God always gives His best to those who leave the choice with Him.
5. All people smile in the same language.
6. A hug is a great gift..one size fits all. It can be given for any occasion and it's easy to exchange.
7. Everyone needs to be loved...especially when they do not deserve it.
8. The real measure of a person's wealth is what she (or he) has invested in eternity.
9. Laughter is God's sunshine.
10. Everything has beauty but not everyone sees it.
11. It's important for parents to live the same things they teach.
12. If you fill your heart with regrets of yesterday and the worries of tomorrow, you have no today to be thankful for.
14. Happy memories never wear out....relive them as often as you want.
15. Home is the place where we grumble the most, but are often treated the best.
16. People look at outward appearance, but God looks within.
17. The choice you make today will usually affect tomorrow.
18. Take time to laugh for it is the music of the soul.
19. If anyone speaks badly of you, live so none will believe it.
20. Patience is the ability to idle your motor when you feel like stripping your gears.
21. Love is strengthened by working through conflicts together.
22. The best thing parents can do for their children is to love each other.
23. Harsh words break no bones but they do break hearts.
24. To get out of a difficulty, one usually must go through it.
25. We take for granted the things that we should be giving thanks for.
26. Love is the only thing that can be divided without being diminished.
27. Happiness is enhanced by others but does not depend upon others.
28. You are richer today if you have laughed, given or forgiven.
29. For every minute you are angry with someone, you lose 60 seconds of happiness that you can never get back.
30. Do what you can, for who you can, with what you have, and where you are.
31. The best gifts to give:
To your friend - loyalty; To your enemy - forgiveness; To your boss - service; To a child - a good example; To your parents - gratitude and devotion; To your mate - love and faithfulness; To all men and women - charity.
WASHINGTON, April 11 /PRNewswire/ -- Sometimes a fly swatter isn't enough. Creeping, crawling, stinging, buzzing, biting and growing their way into public awareness, pests are causing more health and safety problems than ever. Pesticides offer help for the problem with pests.
"Just as antibiotics protect humans from undesirable bacteria and germs, pesticides keep dangerous and damaging pests in check," says Allen James, executive director of RISE (Responsible Industry for a Sound Environment)(R).
RISE is an association of companies that produce and supply pesticides for general consumer use and professional application.
"We advocate the safe and responsible use of pesticide products," James adds.
Pests have recently received a lot of press. Last year mosquitoes caused major health problems in New York City and surrounding suburbs. In September, officials traced an encephalitis outbreak to a mosquito-borne virus never before seen in the Western Hemisphere. Seven people died and 52 others fell ill. Mosquitoes were also the culprits for malaria that struck two boy scouts at a camp on Long Island.
Other pests pose risks to humans as well. A record 18,000 cases of tick-borne Lyme disease were reported in 1998. Fire ants, which can be fatal, sting 60,000 Americans annually. Rats bite more than 45,000 people each year and spread diseases such as Hantavirus, typhus and food poisoning. Cockroach droppings are responsible for asthma, dysentery and digestive track disorders. Children are often the prime victims of pests due to kids' curious nature, smaller size, and still-developing immune systems.
"Pesticides are extremely important in protecting public health. Without pesticides, we would be in a difficult position," said Jerome Goddard, Ph.D., a medical entomologist with the Mississippi Department of Health and professor at The University of Mississippi Medical School.
With the proper use of pesticides, the public is well protected.
"Pesticide products that rid homes, schools, parks and workplaces of unwanted insects, plant diseases and weeds, are extensively tested for health, safety and consumer benefits as are antibiotics and other pharmaceuticals," said James.
Pesticide testing and development takes eight to 10 years per product at a manufacturer's cost of $35 million to $50 million or more. Only one in 20,000 products makes it to the marketplace. Prospective pesticides are tested for harmful effects to adults, children, the unborn, and the environment.
"Consumers do not need to fear being around pesticides when products are being used according to the label," said Goddard.
The only ones that need to worry are the pests.
Dr. Henry Feder Jr., the University of Connecticut Health Center in Farmington wrote an article for the April 4th issue of Pediatrics outlining two different opinions on how to treat Lyme disease.
He describes a public hearing held in Connecticut in February 1999 concerning a bill the state legislature was considering. The bill would require Connecticut health insurance companies to pay for at least 30 days of IV therapy for children and adults with presumed Lyme disease.
Dr. Feder reported one side of the debate involved community based doctors who believe Lyme disease can be diagnosed without objective findings and without positive serology. Two adult patients with chronic Lyme disease also spoke.
The other side included Dr. Feder and other academic based doctors who feel that most Lyme disease symptoms resolve after initial treatment. He went on to say that until results of an ongoing study are known, IV therapy for patients with chronic disease cannot be recommended. Dr. Feder did acknowledge that traditional medicine has failed chronic Lyme disease patients. He felt the patients who spoke were sincere in their testimony and their belief that their symptoms improved with IV antibiotic therapy. However, he added that until prospective, blinded, controlled studies are completed, prolonged IV antibiotic therapy should not be used.
Nevertheless, the bill mandating insurance coverage of long-term IV antibiotic therapy passed the Connecticut legislature in June 1999. The bill states that objective findings and/or positive Borrelia burgdorferi serology are not required.
WESTPORT, Apr 20 (Reuters Health) - Although experimentally infected dogs showed no viable Borrelia burgdorferi spirochetes more than 360 days after antibiotic treatment, analysis by polymerase chain reaction (PCR) revealed evidence of the organism in single tissue samples, according to findings published in the March issue of the Journal of Infectious Diseases.
Dr. Reinhard K. Straubinger, of Cornell University, Ithaca, New York, and colleagues infected 16 pathogen-free beagles with B. burgdorferi. Starting 120 days after tick exposure, three groups of four dogs were treated with azithromycin, ceftriaxone or doxycycline. The fourth group of four dogs received no treatment and acted as controls.
All dogs became infected and 11 developed acute arthritis 50 to 120 days after exposure. These episodes lasted 3 to 6 days and resolved without treatment. After day 120, one of the treated dogs showed brief episodes of lameness, as did two of the controls.
At 420 days after exposure, two dogs from each group were given oral prednisone for 14 days to determine whether clinical disease could be reactivated even after antibiotic therapy. All treated dogs remained free of clinical disease, while both dogs from the control group developed pain and joint swelling.
Both animals recovered without medical treatment within 7 days. They had high titers of B. burgdorferi–specific antibodies that did not change in response to corticosteroid administration.
At necropsy, single tissues from the antibiotic-treated dogs and multiple tissues from all control animals were positive for B. burgdorferi by PCR.
The researchers, who note that viable spirochetes were not recovered from antibiotic-treated animals, call for further research to determine whether the PCR findings "indicate an ongoing persistent infection in these animals or only the presence of DNA remnants of dead Borrelia."
J Infect Dis 2000;181:1069-1081.
When a vaccine became available that would eradicate polio, a panicked government rushed it to the public. But did it act too quickly? Early batches of the vaccine were contaminated with a monkey virus that now may be linked to cancer. And New York is one of the areas most at risk.
There is a (quite long) article available if you are interested
in getting an emailed copy email PSpatches@aol.com
or click here
Review of the Book by Marta
I just wanted to let all know, I ordered this book priority mail and received it in two days. It was wonderful and I highly recommend it to everyone who has LD. You will identify strongly with the problems Jenny and her Mom had in finding good doctors, and the horrible experiences she had with some.
One doctor slapped her across the face telling her to grow up. One heartless OR doctor responded to a nurse who asked "Why are you getting this portacath surgery?" by saying "Don't you know, she has Lyme disease, that's fatal....HA HA HA!" Yes, in Jenny's case, Lyme disease was fatal, but she faced each obstacle with faith in God and always tried to live with her disease, just wanting to be a normal teenager.
Jenny's Mom, Sue is an inspiration, she fought for her daughter at every turn and if awards are ever given out for caregivers, she should win top prize. I cannot find the words to express how touched I was by this book. Please buy it and judge for yourself.