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» LymeNet Flash » Questions and Discussion » Medical Questions » Tincup's 9 FAQ, frequently asked questions May 2001.

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Author Topic: Tincup's 9 FAQ, frequently asked questions May 2001.
bettyg
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Recently I saw Tincup's post on here, but I've spent the last 1.5 hours looking for it thru "search" and hands-on screen by screen in medical & general with no luck.

Her FAQ spacing was all over the place when it ended up on here, so I edited for sentences going all across the page vs. here/there.

Nothing was changed except: where she showed the ticks can be killed on your clothing by the clothes dryer. Latest news was: ticks can NOT BE KILLED BY CLOTHES DRYER.

Great info that Tincup provided; enjoy; print her part off as a good refresher or for family/friends who don't understand about lyme!


TINCUP'S NINE FREQUENTLY ASKED QUESTIONS, FAQ
May 2001

I had sent in some of my "Lyme Projects" to the newspapers and they have been cut tremendously....But then I am a "TINY bit wordy" at times! HE HE!

Since they wanted an interview (question and answer form) on the topic...I complied. They sent the questions...I had to answer. Yes, I am happy that it is being printed.

The article below was written for a different paper (not yet submitted, but they have always been kind enough to print my stuff) and similar to the original one I submitted to the other paper...

MAY IS NATIONAL LYME DISEASE AWARENESS MONTH
by Lucy Barnes aka TINCUP
May 2001

Frequently asked questions:

1. What is Lyme disease and who is at risk for getting it?

Lyme Disease is caused by a spirochete (similar to the one that causes syphilis) and can be found in ticks, fleas, horse flies, mosquitoes, and numerous wild and domestic animals, from deer to birds.

Once transmitted to humans, the spirochete (over 300 strains identified to date) causes damage by spreading to various parts of the body.

It can infect any and all organs and tissues in the body. It can cause a multitude of symptoms that can make a person very ill, totally disabled, and/or it can be fatal. The Maryland Community and Public Health Administration reports that Lyme Disease is ``common in the suburbs''.

2. Can it be transmitted from person to person?

The spirochete that causes Lyme Disease has been found in:

semen, urine, blood, breast milk, the cervix, spinal fluid, muscle tissues, joint fluids, and other body fluids and tissues .

Those who have Lyme Disease are prohibited from donating blood or organs.

Lyme Disease has also been shown in many cases to be passed from mothers to their unborn children, and to young babies through breast milk. Anyone concerned should take appropriate precautions.

3. What are some of the signs and symptoms of the disease?
What are the effects of Lyme disease?

Unless a lay person or doctor is very experienced with Lyme Disease, they may not recognize it until it is too late, and often, not at all.

Lyme has been misdiagnosed as variety of 300 other conditions; such as:

Muscular Sclerosis, Chronic Fatigue, Alzheimers, Fibromyalgia, Parkinson''s, Lupus, Depression, Encephalitis, (Betty adding ALS, Lou Gehrig's and all mental illnesses) and various forms of arthritis.

The list of possible symptoms is overwhelming and there can be anything from hearing loss to panic attacks surfacing in otherwise healthy individuals as the first indication of Lyme.

Some patients do not recall a tick bite (thought to many never get the typical bulls eye rash or flu-like symptoms that are often associated with early stages of Lyme be the most common form of transmission).

Lyme can affect the eyes causing:

* sensitivity to light,
* floaters,
* blurry vision,
* conjunctivitis,
* and even blindness.

The brain and surrounding tissues can become infected and damage can range from mild to severe.

Often the digestive tract is compromised and people with Lyme can battle:

* acid reflux,
* gas/bloating,
* nausea,
* diarrhea,
* cramps,
* blockage,
* and pain.

The bladder and reproductive organs are not spared and hormonal and menstrual problems may surface in woman; while swollen testicles and pain may cause problems for men.

The heart and lung problems can range from palpitations and shortness of breath, to heart block and respiratory failure.

There is often brain ``fog'':

* memory problems,
* confusion,
* difficulty thinking,
* and speech difficulties.

* Depression, severe anxiety, insomnia, and mood swings are common.

* Extreme fatigue is usually a constant problem, along with muscle spasms and joint pain.

Even with what is considered appropriate treatment, Lyme Disease patients can have a reoccurrence of symptoms and/or new symptoms may develop.

The thyroid responses can be altered and require adjunct therapy.

Other infections are hard to fight off once the immune system is compromised by the spirochete, and in turn:

* severe yeast infections,
* sinus problems,
* asthma attacks,
* urinary tract infections,
* colds,
* kidney infections,
* and eye infections tend to become more severe and/or more frequent.

The blood sugar levels, blood pressure, pulse, and body temperatures tend to fluctuate, which can cause additional problems. As the spirochetes die off in the human body, toxins develop which can cause a multitude of chronic problems unless treated properly.

There are promising new treatments available to help control or eliminate the toxins. Those being treated for Lyme should be aware of the possibility of a Herxheimer reaction. The ``herx'', as it is better known, is an increase in
the severity of symptoms and often follows the initiation of antibiotic therapy.

The reaction can be mild or very severe and may be confused with an allergic reaction to medication.

4. What should I know about Lyme Disease and tick bites?

There is a great deal of outdated information still floating around that indicates a tick
must be attached for at least 24-48 hours to be able to infect a person.

Unfortunately, this is not the case and many have found out the hard way and are still suffering the consequences. The only way to prevent Lyme is to not come in contact with the spirochete. However, once in contact with an infected source, the earlier the treatment the better.

Early treatment will not guarantee a cure, but it hopefully will increase the chances of recovery.

Unfortunately, the standard Lyme Disease blood tests (ELISA) that are often used to detect antibodies have a very poor record of detecting the disease and are thought to miss approximately half of the actual cases of Lyme Disease.

They are less expensive than many of the more accurate tests and are commonly used as a screening test by insurance companies over the more specific tests performed at specialty labs.

In addition, the standard 2-3 weeks of antibiotic treatment that was once thought
to be adequate to cure Lyme Disease has been shown to NOT be effective in many patients.

There are no documented long term studies that indicate a short course of antibiotic treatment is able to cure Lyme Disease, and those treated with a short course of antibiotics have been found to relapse, often repeatedly.

If you contract Lyme Disease, not only is immediate treatment appropriate, but enough treatment MUST be provided by a knowledgeable health care provider.

5. What type of treatment is available?

Treatment protocols vary depending on the amount of time between the infection and when treatment begins. It is also very possible to be co-infected with other tick born illnesses:

* (Babesiosis,
* Rocky Mountain Spotted Fever,
* and Ehrlichiosis, all of which can be fatal,
* and are found in Maryland) at the same time as contracting Lyme Disease, and this must be considered.

To determine the proper treatment for Lyme Disease, the spirochete load, the persons age, prior health, allergies, length of time between bite and treatment, etc.; all must be considered.

According to current guidelines used by doctors familiar with the disease, the early cases should be treated with antibiotics for a minimum of 4-6 weeks, and late stages usually require a minimum of 4-6 months of treatment, either IV or oral medications, or both.

If treatments are discontinued before all symptoms of Lyme disease have ended, a person can remain ill and relapse. Patients who have been ill for years may require open ended treatment and/or ongoing maintenance therapy to prevent the worsening of symptoms.

There is no current test available to determine if a patient has been cured, so it is extremely important that a doctor very familiar with treating the disease be consulted.
6. What are the long term effects of Lyme Disease?

Patients can relapse with any and all of the original symptoms:

* can develop new symptoms, and can progressively deteriorate as time goes by.

* Many will become unable to exercise, or even to barely walk.

* Speech, writing skills, and communication problems may get worse and many may become bedridden or house bound.

* The brain can be damaged, eyesight and hearing can worsen, severe headaches and neck pain can continue, and muscles and joints can become wasted.

* The heart and lungs can be seriously compromised and the bladder and digestive tract symptoms can worsen.

* Severe depression, anxiety, and panic attacks can continue unchecked.

* Violent rages are noted in some individuals, and overall mental abilities may show a decline.

* The financial burden of Lyme can be devastating with hundreds of thousands of dollars being spent in the pursuit of a diagnosis, the costs of treatment, and follow-up therapy.

* Families have lost their homes, their jobs, and their sanity while trying to deal with all of the effects of the disease.

* Children have been removed from school for years at a time, marriages have broken up, and Lyme patients have committed suicide.

* To add to the problems, many insurance companies continue to deny access to proper testing procedures and treatment which further stresses individuals and can worsen their overall health.

7. Has Lyme disease been on the increase locally?

The Center for Disease Control, CDC, requires cases of Lyme disease to be reported; however, they exclude cases that are not serologically confirmed and many seronegative cases are not reported, even though Lyme Disease has always been a ``clinical diagnosis''.

It is estimated that there are at least ten times the number of cases actually occurring than what are reported each year, and that is a very conservative figure.

To add to the problem, an infected female tick can produce 2 to 5 thousand babies and can be carried into new areas by birds, pets, wildlife, and people, increasing the chance for exposure.

8. What is the best way to prevent Lyme Disease?

Many suggest anyone at risk for exposure should wear:

* long pants,
* long sleeve shirts,
* shoes and socks,
* and a hat outdoors.

* In 80 to 90 degree weather that is almost impossible and may cause heat related illnesses, especially in those working outdoors.

* I recommend wearing light colored clothing and doing regular tick checks while outdoor and once returning home.

* Clothing can be put into the dryer and heated for twenty minutes to kill ticks. Insect repellent applied to the skin may help to deter some ticks, but it is not a fool proof method.

* I recommend a treatment, such as, Repel Permanone, be applied to outdoor clothing and equipment (not for use on skin).

* This product actually kills ticks as they crawl across treated surfaces, instead of trying to deter them or chase them away. It is unscented which makes it acceptable to hunters and fishermen.

* I also suggest using a yard treatment called Sevin Dust (or liquid) in infested areas with high tick populations. It can be used where pets run, on the lawn, in the garden, on bushes, and wood piles, as directed by the manufacturers. It won't kill all of the ticks but it will reduce the numbers to a more manageable level.

9. Should our family get the new LymeRix vaccine?

I personally do not recommend the current Lyme Rix vaccine be given to anyone.

Its uses are limited in the fight against Lyme Disease and the manufacturers admit it is not effective in preventing all cases of Lyme Disease.

Its long term effects have not been thoroughly studied, and it is not known if it will work effectively in preventing all of the various strains of Lyme Disease, or if and when a person will require booster shots.

It is not effective against the other tick born diseases and may give a false sense of security to those who might otherwise be more alert to ticks. It has been reported, by a number of people who were given the vaccine, to cause a severe form of arthritis for which there is no cure.

There is a lawsuit pending against the manufacturers by those who have developed severe Lyme-like symptoms and there are approximately 1,000 documented reports which have been filed concerning various problems associated with the vaccine.

For more information:

Lots of Links on Lyme Disease- Art Doherty

http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html

LymeNet http://flash.lymenet.org/scripts/Ultimate.cgi

edited by Betty Gordon, 3-26-06

[ 28. March 2006, 01:30 AM: Message edited by: bettyg ]

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AZURE WISH
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Thank you for bringing this back up and editing it....

it was interesting to read. some things I had forgotten about.

Thank You [Smile]

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

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robi
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Info below is outdated. I don't think that is from March 2006....... if I am mistaken, please let me know. Did Tincup revise these? Didn't think she was around right now?

robi

9. Should our family get the new LymeRix vaccine?

I personally do not recommend the current Lyme Rix vaccine be given to anyone.

Its uses are limited in the fight against Lyme Disease and the manufacturers admit it is not effective in preventing all cases of Lyme Disease.

Its long term effects have not been thoroughly studied, and it is not known if it will work effectively in preventing all of the various strains of Lyme Disease, or if and when a person will require booster shots.

It is not effective against the other tick born diseases and may give a false sense of security to those who might otherwise be more alert to ticks. It has been reported, by a number of people who were given the vaccine, to cause a severe form of arthritis for which there is no cure.

There is a lawsuit pending against the manufacturers by those who have developed severe Lyme-like symptoms and there are approximately 1,000 documented reports which have been filed concerning various problems associated with the vaccine.


--------------------
Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy'

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bettyg
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Robi, yes, Tincup was back just to post this in the last 2-4 weeks. Again, the dates are from HER original post that I copied/pasted into my wordperfect software.

Robi, I have no knowledge of no. 9 if it is accurate or not. May I suggest you email Tincup? Her email was on 90% of her posts . So just find one of her posts probably from TREEPATROL'S NEWBIE LINKS, and email her for clarification since you are questioning it.

[QUOTE]Originally posted by robi:

Info below is outdated. I don't think that is from March 2006....... if I am mistaken, please let me know. Did Tincup revise these? Didn't think she was around right now? robi

fyi, Robi, copied/pasted no. 9 question/answer below word for word so I have just deleted it since it appears in Robi's post to me. Betty

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robi
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Thanks, I am in touch with her and will ask next tme.

Thnaks for posting this this.

robi

--------------------
Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy'

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Melanie Reber
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Actually, this is an older post of hers from May, 2001.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=002237

I brought it up last week to remind everyone that May is approaching, and we should begin thinking of what we can do to promote Lyme Awareness.

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bettyg
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Melanie, thanks for solving this mystery why I couldn't find the post; it was in YOUR post!

Robi, I stand corrected; Tincup wasn't here as I thought she was; my apology.

Melanie, feel free to copy to your post where you showed TC's 9 FAQ and also to comment somewhere that I have edited it so it's better formatting for printing a hard copy of. Thanks Melanie.

I thought I was losing my mind for awhile; yeh, I know... I'll just leave it at that ok! [Big Grin]
Bettyg

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Melanie Reber
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I'm not exactly sure what you are asking me to do Betty...

If you will click on the link I provided above, you will see that this was Tincup's post, from May of 2001.

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bettyg
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Melanie, disregard my comments please; another neuro lyme brain episode!

I just checked; I did copy it to Tincup's actual post when I originally got it done; I just could NOT remember having done so! [Embarrassed]

So sorry for my confusion Melanie! [Smile]
Bettyg

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Melanie Reber
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It is OK my dear, just making sure that we understand each other [Smile]

M

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