LymeNet Newsletter Volume 3 Issue 12

Volume: 3
Issue: 12
Date: 07-Aug-95

Table of Contents:

I. AP: 2nd Tick-Carried Disease Identified II. NT TIMES: You Can Surely Die of Lyme Disease III. LYMENET: Antibiotic Resistance? IV. LYMENET: E-Mail Address Correction For Ira Maurer V. LYMENET: Alzheimer's / Lyme Connection? VI. LYMENET: What Does the Bull's Eye Really Mean? VII. About The LymeNet Newsletter

Newsletter:

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

IDX# Volume 3 - Number 12 - 8/07/95 IDX# INDEX IDX# IDX# I. AP: 2nd Tick-Carried Disease Identified IDX# II. You Can Surely Die of Lyme Disease IDX# III. LYMENET: Antibiotic Resistance? IDX# IV. LYMENET: E-Mail Address Correction For Ira Maurer IDX# V. LYMENET: Alzheimer's / Lyme Connection? IDX# VI. LYMENET: What Does the Bull's Eye Really Mean? IDX# VII. About The LymeNet Newsletter IDX#

QUOTE OF THE WEEK:

"While fatalities due to Lyme disease are not commonplace, it is disturbing that Federal official deny their existence."

-- LymeNet Newsletter Contributing Editor Carl Brenner in a Letter To The New York Times (See Section II).

I. AP: 2nd Tick-Carried Disease Identified ----------------------------------------------- Source: Associated Press and the New York Times Date: July 12, 1995

NEW YORK (AP) -- The tick that carries Lyme disease also carries a recently identified illness that has stricken at least 60 people and killed four nationwide, The New York Times reported today.

The bacterial illness is easily treatable, but responds to only one type of antibiotic while Lyme disease responds to several, the Times said, citing medical researchers.

Researchers described the disease -- human granulocytic ehrlichiosis, or HGE -- in an article in July 1994 in the Journal of the American Medical Association. They said it was spread by ticks and speculated that the deer tick, which carries Lyme disease, was the type of tick responsible.

HGE can produce more severe flu-like symptoms than Lyme disease and diagnosing it can be more difficult.

Lyme disease often is signaled by a telltale circular rash around the site of a tick bite. HGE usually hits unannounced, multiplying inside white blood cells and then typically causing a sudden fever, chills, headaches and muscle aches.

``With HGE, you can go from wellness to a really severe, debilitating disease within hours,'' said Dr. Johan Bakken, an infectious disease specialist at the Duluth Clinic in Duluth, Minn. ``You feel like someone worked you over with a bat.''

About 60 cases have been confirmed nationwide so far, but dozens of other cases of illness from tick bites fit the pattern, said Dr. J. Stephen Dumler, a pathologist at the University of Maryland School of Medicine who is analyzing the DNA of bacteria isolated from tick-bite patients.

Four people have been known to die from the new infection, the Times said. In contrast, federal health officials have yet to document a single death out of tens of thousands of cases of Lyme disease, according to the newspaper.

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II. You Can Surely Die of Lyme Disease ---------------------------------------- SOURCE: The New York Times DATE: July 19, 1995 Section: Letters To The Editor

To The Editor:

Your report on the outbreak of human granulocytic ehrlichiosis in the Northeast ("A New Lethal Illness Carried by Ticks is Identified" July 12) contains an astonishing assertion about Lyme disease by Federal Officials that they have been unable to "document a single death out of tens of thousands of cases of Lyme." They aren't looking very hard; fatalities to due Lyme disease appear in the peer-reviewed medical literature.

A 1988 paper in the Journal of the American Medical Association reported a case in which a previously healthy Pennsylvania woman died of adult respiratory distress syndrome secondary to Lyme disease only months after been infected with the Lyme spirochete. On autopsy, spirochetes were visualized in her lymphatic tissue. A the end of the report, the authors urged physicians "to consider the multisystemic features of Lyme disease and recognize its lethal potential."

A Lyme disease death due to heart failure was described in a 1985 case report published in the Annals of Internal Medicine. Spirochetes were present in the patient's myocardium on autopsy.

Last year, The Annals of Internal Medicine published an article on the long term clinical outcomes of Lyme disease in an endemic community in Massachusetts. One patient, who contracted the disease in 1982, developed a severe neurological syndrome and died several years later. On autopsy, the patient had spirochetes in her brain.

While fatalities due to Lyme disease are not commonplace, it is disturbing that Federal official deny their existence.

Carl Brenner Hawley, PA, July 13, 1995 The writer is a contributing editor of the LymeNet Electronic Newsletter

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III. LYMENET: Antibiotic Resistance? ---------------------------------------------------- Sender: James W. Weinberger <[email protected]> My wife has had a problem with the LD spirochete developing antibiotic resistance after 5-6 weeks on an antibiotic, with resulting relapse while still on the IV antibiotic. This has happened with IV claforan, IV Rocephin, and intramuscular injections of Bicillin with oral Biaxin. Each time a new antibiotic is started, there is a dramatic improvement in symptoms, but at 5-6 weeks, the symptoms begin to worsen again, and by 7-8 weeks, they are even more severe than they were to begin with. The situation is especially serious since the symptoms are potentially life-threatening as they affect the cardiac and respiratory functioning. Has anyone dealt with this kind of antibiotic resistance?

Also, I would like to hear from anyone who has respiratory symptoms similar to my wife's. These consist of episodes of apnea (cessation of breathing) at night, and feelings during the day of not getting enough air or having to work to get enough air.

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IV. LYMENET: E-Mail Address Correction For Ira Maurer ------------------------------------------------------- Sender: Ira Maurer <[email protected]>

I inadvertently published the wrong address (in issue #10). My correct e-mail address is: [email protected]

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V. LYMENET: Alzheimer's / Lyme Connection? --------------------------------------------- Sender: [email protected] (phone #: 817/240-3003)

While reading the Alzheimer's message board online, I stumbled upon a message about a 36 year old man who has been diagnosed as having ALZHEIMER'S. I found it interesting that this young man has the same type of brain damage (MRI confirmed) that I do - of course on a much grander scale than mine. I am a clinically and laboratory confirmed case (bad case) of Lyme Disease in Texas. This family is in Houston, Texas area.

He has been hospitalized for about two months and now the hospital is telling his wife that they can no longer keep him there and to put him into an institution. He is suffering from "dementia", has short- term memory problems and some days does NOT even recognize his family.

One cold, heartless social worker told his wife that the best thing to do is to divorce him so he will be considered "indigent" so he can be institutionalized and receive "care" from the State of Texas.

In my opinion, he needs a physician who will do a little detective work and find out what the real problem may be. He needs MEDICAL ASSISTANCE, not a divorce and NOT to be placed in an institution to die untreated - if he, indeed, is treatable.

This family is in a very bad way and they need help. The wife has been a homemaker all her married life and they have two young children. Brian has not been able to work since August 94.

I sent her some articles I found pertaining to the Alzheimer's/ Lyme connection but I think the family's problem will be finding a physician to listen to them to at least explore this possibility. I say that due to my past experience while trying to get help with Lyme Disease. It took a very special physician who would LISTEN to me and I think that kind of physician is what this family needs to find. They are running out of time.

Does anyone know of a Lyme-knowledgeable physician in the Houston area who would be willing to explore all avenues for this young man and his family? and one who is aware of the AD / LD connection research is pointing to?

Something tells me that the AD diagnosis for this young man stinks - just a gut feeling I have - and I am turning to LymeNet to hopefully find some assistance for them. There HAS to be a physician in the Houston area who has a heart and who will be willing to explore other reasons for his problems.

Please put on your thinking caps to help find a physician for Brian. I will promptly forward all helpful mail to their friend on AOL who is also frantically looking for help.

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VI. LYMENET: What Does the Bull's Eye Really Mean? ---------------------------------------------------- Sender: Bruce Fowler <[email protected]>

My 6 year old son was bitten by a tick (never verified by sight) and developed the red bulls eye target. Three doctors have said this bulls eye ring is "diagnostic" of Lyme disease, but our pediatric contagious disease specialist says the bullseye only indicates our son was bitten by a tick. Could you help clarify what this bulls eye rash means please.

My son was given 5 days of penicillin V and 10 days of erythromycin (changed because the two doctors could not agree on the "best drug"). Could you please comment on the effectiveness of these 2 drugs in treating Lyme disease, and also on the duration of treatment. The drugs were started about 5 days after the bite when the rash first was noticed. No other symptoms have been noticed other than the bulls eye (which disappeared about the end of the 15 days of drug treatment) and my son appears to be fine 6 weeks after the tick bite.

My last question is what type of medical follow-up should I be ensuring my son gets?

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VII. ABOUT THE LYMENET NEWSLETTER ---------------------------------- For the most current information on LymeNet subscriptions, contributions, and other sources of information on Lyme disease, please request the LymeNet Resource Guide. To obtain the Guide, send a blank message to: [email protected] ----------------------------------------------------------------------- The LymeNet Resource Guide is in Revision: 1.10 ----------------------------------------------------------------------- LymeNet - The Internet Lyme Disease Information Source ----------------------------------------------------------------------- Editor-in-Chief: Marc C. Gabriel <[email protected]> FAX: 908-789-0028 Contributing Editors: Carl Brenner <[email protected]> John Setel O'Donnell <[email protected]> Frank Demarest <[email protected]> Advisors: Carol-Jane Stolow, Director <[email protected]> William S. Stolow, President <[email protected]>
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