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» LymeNet Flash » Questions and Discussion » Medical Questions » Florida and Maryland patients

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Author Topic: Florida and Maryland patients
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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I have written up two press releases.. one for each state of Florida and Maryland... that can be sent to your local papers, tv stations and/or radio stations for May is Lyme Disease Awareness Month.

They can also be used as an overview to send to your state or federal legislators.. especially if you are contacting them to ask them to sign onto bills.

I have shared them with one support group so far who will use them at their next meeting as a handout.

I will post one below.. and then the other one.

If you would like a nice looking copy as an attachment so it is easier to work with.. please contact me and I will gladly share one with you. It prints out to be 2 pages exactly.. or one page front and back.

Basically the "meat" is the same in both.. but the state information is adjusted for your area.

Let me know.

I wish I had time to send these to eveyone in the media and the legislators.. but I don't. So I am counting on you to grab the tick and run with it.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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I have spaced this out for easier reading but it doesn't look as pretty as it does on the document. Plus you would add YOUR contact information on the top of the press release or handout.

`````````````````````````````````````````````


May is Lyme Disease Awareness Month

Lyme disease is the most commonly reported vector borne disease in the United States; however, it remains largely underreported and undiagnosed throughout Maryland, as well as nationally. Maryland is among the top ten states for the highest Lyme disease rates in the country and boasts the highest rate of new Lyme disease cases nationwide for the first few months of 2007.

Over the past two years, the Maryland Department of Health and Mental Hygiene confirmed over 2,200 new cases of Lyme disease in the state. According to the Centers for Disease Control's 10-fold assessment, over 22,000 Maryland residents were infected in just the past two years.

Lyme disease is caused by a spirochetal organism (Borrelia burgdorferi) similar to the one that causes syphilis. Ticks are the most well-known transmitters of the disease, however, less than 50 percent of people with Lyme disease recall a tick bite. There are over 300 known strains of Borrelia and at least 3 different forms of the organism which are virtually undetectable in humans using current standard lab testing methods.

Tick borne diseases, viruses and infections such as babesiosis, ehrlichiosis, Rocky Mountain Spotted Fever, STARI, leptospirosis, parvo B-19, Epstein Barr, tularemia, salmonella, brucella, hepatitis, mycoplasma, trichinosis, and bartonella are also being reported in patients who have contracted Lyme disease.

Symptoms

Early symptoms of Lyme disease can be intermittent and changing if they appear at all. Neurological disorders, rheumatological syndromes, and cardiac problems can occur in varying combinations over months to years. The most obvious sign of early Lyme disease is the erythema migrans skin rash which occurs in less than 50% of adult patients and less than 10% of children. Early Lyme disease symptoms, if they occur at all, may include malaise, fatigue, fever, headache, stiff neck, myalgias, arthralgias and/or lymphadenopathy.

Lyme disease symptoms can fluctuate, remit or may become chronic and debilitating. Lyme disease in its varying presentations and stages can mimic or be indistinguishable from fibromyalgia, chronic fatigue syndrome, multiple sclerosis, Lupus, Alzheimer's, Parkinson's, Lou Gehrigs (ALS) disease, Attention Deficit Disorder (especially in children), Guillian-Barre syndrome, polymyositis, myelitis, hepatitis, cardiac disorders including heart block, ringworm, encephalitis, ADHD, meningitis, depression, OCD, panic disorders, cerebellar ataxia, motor or sensory radiculoneuritis, Bell's or facial palsy, candidiasis, mononucleosis, hypoglycemia, scleroderma, Epstein Barr, autoimmune diseases, Bannwarth's syndrome, cancers, kidney disease, Raynauds syndrome, chronic arthritis, stress-related illness, sleep disorders, thyroid abnormalities, vasculitis, TMJ, anorexia, agoraphobia, connective tissue diseases, hearing disorders, Crohn's disease, purpura, pseudotumor, Sjogrens syndrome, stroke, and respiratory insufficiency.

Co-infection with other tick borne pathogens can alter the clinical appearance of Lyme disease and should be considered when ordering diagnostic testing and reviewing treatment options.

Diagnostics

The diagnosis of Lyme disease is largely clinical and a doctor familiar with treating all phases of the disease should be consulted. Serologic tests are poorly standardized and if ordered must be interpreted with extreme caution as many false negatives occur. Due to poor test sensitivity, some chronic Lyme disease patients may remain seronegative.

If evidence of Lyme disease is not detected in the laboratory, it does not mean it is not present. Standard testing methods, which are costing Maryland residents over two million dollars a year, have been proven to miss up to 90% of those infected.

Treatment

The sooner treatment is started, the higher the success rate. Under treated infections will inevitably re-emerge and can cause chronic and disabling conditions which may never be properly diagnosed or treated. Treatment failures can occur with all antibiotic protocols, necessitating repeated treatment, extended treatment or ongoing treatment to prevent a decline in health, permanent damage or even death.

Treatment protocols should be developed to meet the needs of individual patients and length of treatment should be based upon patient symptomology, not an arbitrary cut-off point.

Prevention

There are a number of things you can do to protect yourself, your pets and your property:

* When outdoors, stay in open spaces or on well maintained trails.

* Wear light-colored clothing to help spot ticks more easily.

* Spray clothing and garments with repellents containing permethrin which provides protection for several days. Repellents containing DEET can be applied to the skin but last only a few hours before reapplication is necessary. When using insect repellent on your skin, be sure to use products containing less than 50 percent DEET for adults and less than 30 percent DEET for children. Follow all precautions on the label.

* Keep your property clean and your lawn mowed regularly. Leaf litter and brush should be removed as far away from the house as possible. Applications of Sevin (Carbaryl -1-napthyl N-methylcarbamate) in yards can help reduce tick populations. Be sure to use only as directed and follow all precautions on the label.

* Perform frequent tick checks and properly remove attached ticks with tweezers.

* Seek medical treatment when exposed to ticks to initiate antibiotic treatment.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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For Florida.. where the reported cases are so low it is shameful... I focused on other facts...

``````````````````````````````````````````````

May is Lyme Disease Awareness Month

Lyme disease is the most commonly reported vector borne disease in the United States; however, it remains largely underreported and undiagnosed throughout Florida, as well as nationally.

Florida has few reported cases of Lyme due to the fact that Lyme is still considered to be a disease ``only found in the NE''. Unfortunately, most Florida patients with Lyme disease must travel or move out of state to be treated due to lack of awareness by the health care professionals.

Lyme disease is responsible over 2 billion dollars a year in medical costs, however for every one person diagnosed, the CDC reports at least 10 more are missed.

Since 1962, 29 new species of exotic ticks have been documented as coming in the port of Miami and have spread as far as Texas and Georgia. The infectious diseases they carry or transmit to animals or humans have not fully been identified nor are they being researched to any extent.

Lyme disease is caused by a spirochetal organism (Borrelia burgdorferi) similar to the one that causes syphilis. Ticks are the most well-known transmitters of the disease, however, less than 50 percent of people with Lyme disease recall a tick bite.

There are over 300 known strains of Borrelia and at least 3 different forms of the organism which are virtually undetectable in humans using current standard lab testing methods. There is no treatment known to cure all patients.

Tick borne diseases, viruses and infections such as babesiosis, ehrlichiosis, Rocky Mountain Spotted Fever, STARI, leptospirosis, parvo B-19, Epstein Barr, tularemia, salmonella, brucella, hepatitis, mycoplasma, trichinosis, and bartonella are also being reported in patients who have contracted Lyme disease.

Symptoms

Early symptoms of Lyme disease can be intermittent and changing if they appear at all. Neurological disorders, rheumatological syndromes, and cardiac problems can occur in varying combinations over months to years.

The most obvious sign of early Lyme disease is the erythema migrans skin rash which occurs in less than 50% of adult patients and less than 10% of children. Early Lyme disease symptoms, if they occur at all, may include malaise, fatigue, fever, headache, stiff neck, myalgias, arthralgias and/or lymphadenopathy.

Lyme disease symptoms can fluctuate, remit or may become chronic and debilitating. Lyme disease in its varying presentations and stages can mimic or be indistinguishable from fibromyalgia, chronic fatigue syndrome, multiple sclerosis, Lupus, Alzheimer's, Parkinson's, Lou Gehrigs (ALS) disease, Attention Deficit Disorder (especially in children), Guillian-Barre syndrome, polymyositis, myelitis, hepatitis, cardiac disorders including heart block, ringworm, encephalitis, ADHD, meningitis, depression, OCD, panic disorders, cerebellar ataxia, motor or sensory radiculoneuritis, Bell's or facial palsy, candidiasis, mononucleosis, hypoglycemia, scleroderma, Epstein Barr, autoimmune diseases, Bannwarth's syndrome, cancers, kidney disease, Raynauds syndrome, chronic arthritis, stress-related illness, sleep disorders, thyroid abnormalities, vasculitis, TMJ, anorexia, agoraphobia, connective tissue diseases, hearing disorders, Crohn's disease, purpura, pseudotumor, Sjogrens syndrome, stroke, and respiratory insufficiency.

Co-infection with other tick borne pathogens can alter the clinical appearance of Lyme disease and should be considered when ordering diagnostic testing and reviewing treatment options.

Diagnostics

The diagnosis of Lyme disease is largely clinical and a doctor familiar with treating all phases of the disease should be consulted. Serologic tests are poorly standardized and if ordered must be interpreted with extreme caution as many false negatives occur. Due to poor test sensitivity, some chronic Lyme disease patients may remain seronegative. If evidence of Lyme disease is not detected in the laboratory, it does not mean it is not present.

Standard testing methods, which cost some states over two million dollars a year in lab fees, have been proven to miss up to 90% of those infected.

Treatment

The sooner treatment is started, the higher the success rate. Under treated infections will inevitably re-emerge and can cause chronic and disabling conditions which may never be properly diagnosed or treated.

Treatment failures can occur with all antibiotic protocols, necessitating repeated treatment, extended treatment or ongoing treatment to prevent a decline in health, permanent damage or even death.

Treatment protocols should be developed to meet the needs of individual patients and length of treatment should be based upon patient symptomology, not an arbitrary cut-off point.

Prevention

There are a number of things you can do to protect yourself, your pets and your property:

* When outdoors, stay in open spaces or on well maintained trails.

* Wear light-colored clothing to help spot ticks more easily.

* Spray clothing and garments with repellents containing permethrin which provides protection for several days. Repellents containing DEET can be applied to the skin but last only a few hours before reapplication is necessary. When using insect repellent on your skin, be sure to use products containing less than 50 percent DEET for adults and less than 30 percent DEET for children. Follow all precautions on the label.

* Keep your property clean and your lawn mowed regularly. Leaf litter and brush should be removed as far away from the house as possible. Applications of Sevin (Carbaryl -1-napthyl N-methylcarbamate) in yards can help reduce tick populations. Be sure to use only as directed and follow all precautions on the label.

* Perform frequent tick checks and properly remove attached ticks with tweezers.

* Seek medical treatment when exposed to ticks to initiate antibiotic treatment.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Head's up Maryland..

Just got this info from a Maryland resident... thought you'd like to know. I think this would be WJZ-TV?

I would also like any comments about it if possible as I am still down south and won't be able to see it.

If it is good.. I would encourage responding to station.. and if bad.. I would REALLY suggest responding (but nicely).

I have been trying for YEARS to get them to do something and they have refused.

[bonk]


I saw on channel 13 news this morning, they will do a "special report" on Lyme disease tonight (5/3) at 11:00 PM.


[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Duh me...

To contact me for a copy of the press release..

[email protected]

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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proud pup
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About the report on the news tonight, I believe it is about the death of a womans husband due to Lyme.
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Lymeindunkirk
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Member # 7118

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Well written. Thank you.
Posts: 547 | From Maryland | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
trueblue
Frequent Contributor (1K+ posts)
Member # 7348

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Thanks TC! Well done!

--------------------
more light, more love
more truth and more innovation

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trueblue
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Oh, yeah, I should ask the obvious question. Um, what do I do with it? [Roll Eyes]

Make a list of local media thingies. Who do I send it to the attention of? I haven't a clue how this is done.

Sorry so dumb. [Frown]

--------------------
more light, more love
more truth and more innovation

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SandiB
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Tincup,

You may want to add on to the Florida letter the following:
A recent private survey done by LIFELYME, a Lyme Support Group in Tallahassee reported over 2,000 cases diagnosed within the last three years by Florida physicians.

SandiB

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Lymeblue
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Member # 6897

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BUMP!
Posts: 983 | From The sky | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
Patrick
LymeNet Contributor
Member # 8108

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SandiB,

Thank you for adding that info about the cases being found in Florida over the past three years; I am one of them. Since being diagnosed in 2004 I know of five others who were able to find out what was wrong with them after either talking with me or someone who knows what I've been through (and still am going through). My own GP has diagnosed three other cases of Lyme in patients she hadn't been able to figure out prior to me. There is more Lyme here in Florida than I think anyone realises.

Thank you Tincup for posting the press releases I will be contacting you for a copy.

Patrick

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Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Thanks ya'll.

Quick note..

SandiB....

I would like to add that on. BUT.. I need to see the documentation for it before I can. Do you have a copy of the report or know how to get one?

THANKS!!!

Oh.. Trueblue.. I'll respond later... tied up in knots right now... ok?

And Patrick... will send ASAP... and if we get the documentation for the other figures... can you add it in?

OR... take off the title and name on it.. and add YOUR name.. then add what you would like.

No problem with copy right if used as is for educational purposes.. and it is not sold. BUT... if you change anything... you need to claim it as your own. OK?

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Patrick
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Thank you Tincup I understand
Posts: 142 | From Florida | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
tammy120771
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I have recently moved from MD (Baltimore area) & seen the wjz story you were talking about online.

I was diagnosed there about 1 year ago. Now living in South Florida and would love to find a place to put your article.

I went to the local doctor here the other day because my symptoms are back and terrible and he basically laughed at me at first. Said that once you take the 28 course of antibiotics you are cured. What a crock!!

I told him I did not know what he found to be funny and asked how many people has he even treated for it. Needless to say, he changed his tone and put me back on meds.

If it wasn't for the internet & sites like this I may have ended up thinking it was something else. He even told me that he never heard of co-infections just lyme.

I would love to get word out about it. It has caused me a lot of problems in my life & now I just pray some of them are not permanent.

Has anyone heard that taking doxy. with dairy products makes it now absorb? He informed me of this and I love milk and was never told. I had also took the last 28 day course ( 6 months ago) with food all the time and he claims that was a no-no.

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klutzo
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Tammy,
Members of the tetracycline family should never be taken with dairy, and that includes Doxy. It does indeed prevent absorption.

Thanks, Tin Cup for an excellent article. Wish I was not in bed right now recovering from surery, so I could do more. God Bless you for all your hard work,

Klutzo

Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004  |  IP: Logged | Report this post to a Moderator
   

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