LymeNet Newsletter Volume 2 Issue 06

Volume: 2
Issue: 06
Date: 21-Apr-94

Table of Contents:

I. STAR TRIBUNE: U of MN Scientists Show Persistence with PCR II. ANN INTERN MED: The persistence of spirochetal nucleic acids in active Lyme arthritis III. Q&A: Exposure risks of Lyme disease (Q) IV. Q&A: Exposure risks of Lyme disease (A) V. Q&A: Lyme-Associated Gastric Reflux and Cardiac Arrhythmias (Q) VI. Q&A: Alternative Treatments? (A) VII. How to Subscribe, Contribute, and Get Back Issues

Newsletter:

*********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * ***********************************************************************

IDX# Volume 2 - Number 06 - 4/21/94 IDX# INDEX IDX# IDX# I. STAR TRIBUNE: U of MN Scientists Show Persistence with PCR IDX# II. ANN INTERN MED: The persistence of spirochetal nucleic IDX# acids in active Lyme arthritis IDX# III. Q&A: Exposure risks of Lyme disease (Q) IDX# IV. Q&A: Exposure risks of Lyme disease (A) IDX# V. Q&A: Lyme-Associated Gastric Reflux and Cardiac IDX# Arrhythmias (Q) IDX# VI. Q&A: Alternative Treatments? (A) IDX# VII. How to Subscribe, Contribute, and Get Back Issues IDX#

QUOTE OF THE WEEK:

"Any important scientific innovation rarely makes its way by gradually winning over and converting its opponents; it rarely happens that Saul becomes Paul. What does happen is that its opponents gradually die out and the growing generation is familiarized with the idea from the beginning."

-- Pioneering physicist Max Planck, 1936.

I. STAR TRIBUNE: U of MN Scientists Show Persistence with PCR ---------------------------------------------------------------- DATE: March 15, 1994 SECTION: News; Pg. 4B HEADLINE: 'U' uses DNA to find hidden Lyme disease; Technique expands ability to make correct diagnosis BYLINE: Gordon Slovut; Staff Writer

University of Minnesota scientists reported Monday that they have used a DNA expanding technique to diagnose Lyme disease in people who might otherwise be thought to be suffering from some other inflammatory disease or from a central nervous system disorder.

They also diagnosed it in patients who have gone through a three-month course of antibiotics that under most conditions would be considered sufficient to wipe out all traces of the tick-borne infection.

The test relies on extracting genetic material from the synovial or lubricating fluid inside a patient's knee with pliers-like DNA probes, then replicating the genetic material billions of times so that laboratory personnel can see if it is from Lyme bacteria.

Earlier this year, researchers from the Mayo Clinic in Rochester, Minn., and Tufts University in Boston reported that they had used the same test - polymerase chain reaction (PCR), developed by a California scientist - to sort out Lyme disease bacteria DNA from tissue that had been frozen and stored years ago.

Dr. Jesse Goodman, an infectious- disease specialist at the university who collaborated on the research with John Bradley and Russell C. Johnson, said the university's PCR study can help doctors better target treatment in some patients.

Unlike the Mayo-Tufts study, the test material all came directly from patients, he said. Material stored for years in research freezers is subject to possible contamination, he said.

The university study demonstrated conclusively that in some cases where bacterial culture tests are negative for Lyme bacteria, the germs may be still be present - as many as 10,000 organisms per teaspoonful of synovial fluid, he said.

He said that flare-ups of Lyme disease symptoms years later - such as a badly swollen, painful knee - often were thought to be an autoimmune reaction, the body attacking itself, when the cultures for the germ were negative.

He said the missed diagnoses do no immediate harm when the flare-ups are treated with aspirin or Motrin, which may actually ease the symptoms.

But in difficult-to-treat flare-ups, the prescription of powerful drugs such as prednisone to dampen the immune system could make matters worse, because the body might actually be trying to fight off an infection, he said. Bradley, a laboratory technician, examined synovial fluid from seven patients from Minnesota and Wisconsin with suspected Lyme arthritis. Results of the traditional culture tests for the bacteria - in which efforts are made to get the bacteria to grow in a laboratory dish - were negative.

However, with the PCR test, Bradley found evidence of the Lyme bacteria's DNA in six of the seven patients. He also examined synovial fluid from similar, healthy people with PCR. He found no traces of Lyme germs in the fluid from people without symptoms. Bradley did not know in advance whether the fluid came from people with suspected Lyme infections or people who had shown no symptoms.

Among the patients was a 20-year-old man who had developed facial palsy, fatigue, knee pain and swelling. He had received antibiotic therapy for three months, only to turn up positive for the bacteria in the PCR test. Another was a 28-year-old man who for a year had been suffering from worsening episodes of arthritis of the knee.

[...]

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II. ANN INTERN MED: The persistence of spirochetal nucleic acids in active Lyme arthritis --------------------------------------------------------------------- AUTHORS: Bradley JF, Johnson RC, Goodman JL REFERENCE: Ann Intern Med 1994 Mar 15;120(6):487-9 ORGANIZATION: Section of Infectious Diseases, University of Minnesota School of Medicine, Minneapolis 55455. ABSTRACT:

Six of seven patients with Lyme arthritis were positive by PCR. In contrast, all 18 synovial fluid samples from patients with other disorders, including rheumatoid arthritis, spondyloarthropathy, gout, pseudogout, hemarthrosis, degenerative joint disease, lupus, papillary synovitis, and trauma, were negative by PCR (P < 0.001, Lyme arthritis compared with controls, Fisher exact test). All 38 laboratory controls were negative by PCR. The assay reproducibly detected 20 or fewer B. burgdorferi cells directly or when added to extracted synovial fluid that was previously negative by PCR. Polymerase chain reaction was done four times with identical results, including analyses with both outer surface protein A primer sets.

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III. Q&A: Exposure risks of Lyme disease (Q) --------------------------------------------- Sender: Howard Moss <[email protected]>

The letter from Steve Tobin [vol#2 #05] really touched a nerve for me. Living in Northern California is exposing my family and I to Lyme disease or at least, that's what I've heard. I don't see people performing "tick inspections" or exercising true caution (staying away from all tall grassy areas, etc), so I'm not sure if I'm feeling paranoid or properly cautious. Even if I were to institute inspections, what am I looking for? My impression has been that the deer tick is VERY small and almost invisible to the naked eye. Besides waiting anxiously for the answers to Steve's questions, I'd like to know what would constitute and effective inspection for deer ticks. I, too, feel like "staying home" and I think that I need to clear this up now. Thanks for being here as a resource.

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IV. Q&A: Exposure risks of Lyme disease (A) --------------------------------------------- Sender: Carol Stolow, Director, The Lyme Disease Network of New Jersey [In response to Steve Tobin's question, vol#2 #05]

Lyme Disease is one of the greatest health threats to the American public according to the CDC. Presently, it has been known to cause debilitating, chronic problems in many of those afflicted with the disease. However, it is still not clear whether the problem is the result of a persistent, resistant bacteria, improper or delayed treatment or a combination of both. Until there are better tools to measure success of treatment, such as an accurate test, this question can not be properly addressed.

In the meantime, those of us at the Network do not encourage people to hide out in their homes waiting for the crisis to pass. We urge everyone to use common sense. Life is short. If you love hiking and camping then it is foolish to deny yourself the pleasure of these activities. Here are some hints for making these activities a safer experience:

1. Spray all clothing to be worn during trip with Premethryn products (Permanone and Duranon). These are the only known tick killers. Consumer Reports (July, 1993) demonstrated DEET is ineffective in protecting individuals from ticks. Premethryn will remain on clothing until agitated in a washing machine. Clothes are safe once they are dry. This product should not be put on skin. It will break down within 20 minutes proving useless. Since ticks are antigravitational, it is safe to assume it will pass some clothing even if shorts are worn on its way to the top of an individuals head unless it gets interrupted.

2. If a tick gets interrupted on its journey upward, it will stop and feed at that point. That is why a thorough tick check is very important. The frequency of the check should reflect the area. The least amount of ticks will be found on a well manicured lawn. The most likely place is the woods. A tick check should be done in pairs when possible as follows: (Bear in mind, the nymph is quite small and may not be easily visible)

* All bending parts (behind knee, groin area, under arms) * Under points of pressure (waistbands on underwear and clothing, bra straps) * Gentle sweep of all skin areas using eyes then fingertips (an embedded tick feels like a tiny scab) * Gentle sweep of hair, neck, in and behind ears, and bellybutton.

3. Shower as soon as possible after exposure to a high risk area. Any wandering tick should wash off during a vigorous shower.

4. If a tick is found, remove carefully with fine tweezers grabbing as close to the skin as possible. The recommendation from several studies and Lyme specialists is that prophylactic treatment should be given for 4-6 weeks to ensure that Lyme does not become a problem.

5. Parents of your scouts should be made aware of the situation. Alternative or rotating of activities should be considered for those who do not feel comfortable with the risks. Parents should be made aware of the symptoms and should be encouraged to act quickly should they appear. Early Lyme may or may not have a rash. There are many different rashes associated with Lyme so any skin eruption should become suspect until proven otherwise. Other symptoms that may appear initially are general malaise, muscle and joint pain and low grade fever. Unfortunately, symptoms vary with each person. Many improve for a while and then become ill again months or years later. The sooner Lyme is treated (for a minimum of 4-6 weeks) the less likely the patient is to have further problems. The longer the delay in receiving treatment the greater the risk of a more difficult infection.

6. Until Lyme is fully understood and brought under control, awareness is your best defense.

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V. Q&A: Lyme-Associated Gastric Reflux and Cardiac Arrhythmias (Q) --------------------------------------------------------------------- Sender: Phyllis Tyzenhouse <[email protected]>

Can anyone provide information on the prevalence, pathophysiology, duration, and treatment for Lyme-associated gastric reflux? This has persisted for over 1-1/2 years. Onset was about five days after the tick bite and beginning of erythema migrans, accompanied by cardiac arrhythmias.

Can the gastritis produce cardiac arrhythmia?

I have been unable to find a discussion of this in the literature and a Medline search was unfruitful. Any and all help will be appreciated.

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VI. Q&A: Alternative Treatments? (A) -------------------------------------- Sender: Rolf K. Taylor <[email protected]> [In response to Carol Gardner's question vol#2 #04]

[Editor's Note: Patients should consult with their physician before beginning any regimen of dietary supplements.]

First of all, you don't mention if you were taking any "ProBiotics" or "good bacteria" supplements. While there are very published studies, some MDs and many alternative practitioners highly recommend these supplements to keep up your levels of friendly bacteria and leave you less vulnerable to infections by nasty bacteria and yeasts. See the Feb 1994 Lyme Disease Update for a fairly thorough article about this. Two of the Dr's I have seen have recommended them for me.

My advice is that you find and Lactobacillus "Acidophilus" supplement of at least 1 billion organisms per dose and take 2 in the AM and one at noon time and one at bed. Preferably take them after any antibiotics, but if that is difficult take them with the antibiotics. I have seen suggested that they be taken with milk, if possible. I have seen reports which suggest taking one strain at a time (they'll be listed on the label) but I personally feel a combination is best since it increases the chance of having one ideally suited to your intestinal conditions. For this reason I buy them from a variety of different sources. Be sure to check potency.

Regarding more traditional supplements:

Dr. Burrascano recommends the following (from an article by him in issue #10 of the Lyme Times (Spring 1993).

* Essential Fatty acids. Use at least 2 sources. Fish Body Oils (1 to 4 capsules per day). One or more of the following sources; Evening Primrose oil, Black current seed oil, borage oil, and fungal oils. I take 3 fish oil, 2 black current and 1 primrose per day.

* Co Enzyme Q10. 200-300 mg. day in 2 or three doses. This stuff is expensive. You want to find the pure stuff which is a yellow powder. Look for 30 mg capsules or greater for the best value. My current Dr. recommends taking them on an empty stomach and I am currently taking 60 mg each AM.

* Vitamin C. Needed for proper functioning of the Co Q10. He recommends 500 mg with each dose of Co Q10. My Dr. recommends up to 10,000 mg per day (work up to this slowly or diarrhea may be a problem) spaced out over 3 does a day.

* Iron - Timed release. 50 mg with each dose of Co Q10. Iron is also needed for the Co Q10 to be used.

* Vitamin B Complex-One balanced 50 mg B complex per day.

My Dr. also recommends the following supplements:

* Vitamin E (Natural) 400 International Units 2 times per day

* Selenium 50 mg per day.

* Beta Carotene (natural) 15 mg 2 times per day.

Note that the E, C, Carotene are all anti oxidants and are believed by many to reduce your risk of cancer as well as bolster your immune system.

I can't say that these supplements have done much for me. I definitely believe that the Acidophilus and probiotics make VERY good sense as a preventative measure to prevent what has happened to you. I'd warn you that IN MY HUMBLE OPINION you cannot rely on these to "cure" you of Lyme Disease. Of course Lyme is sometimes cured / put into remission without any treatment at all, but I'd be very wary. I would strongly urge you to continue (intermittent if necessary) antibiotic treatment until BOTH you and your Dr. are quite convinced that you've licked the Lyme. IMHO the risk of eventual sequelae is greatly underestimated in LD

By the way, eating yogurt, cheese, and other cultured products has been recommend to me by a chiropractor friend. Avoid the blue cheeses though. Good Luck.

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