"We're not open to writing an article on that subject". Yep. In their words.
I also sent in an editorial. It says when submitting an editorial that it must be 500 words or less or they'd edit it down for you. It was 478 words. They contacted me, saying I had to edit it down to under 400 words. WTF?!
Posted by Kara Tyson (Member # 939) on :
NO disease is allowed to compete for money or attention...except for HIV.
Since the 1990's the society has forgotten that there are other diseases out there. If you wanted to write about how HIV patients suffer they would probably give you a whole page!!
Posted by robi (Member # 5547) on :
HIV is a huge problem ..... as is Lyme ........
Posted by Carol in PA (Member # 5338) on :
Regarding the editorial changing from 500 words to 400 words. Ask them if they've changed their policy, and would they be sure to update in the instructions that they print.
Carol
Posted by Lymetoo (Member # 743) on :
Sheesh.
Posted by ponytail (Member # 36) on :
Well - here's what I might respond:
Dear Sir,
I appreciate your response to my request for an educational article on the diagnosis and treatment of lyme disease.
While I respect your position, "we're not open to writing an article on that subject", I would like to offer the following.
I was "not open" to being ill with Lyme Disease. I had never really heard of Lyme Disease other than it was "something North Eastern folks get from ticks"; however, if you or anyone else for that matter had bothered to assist w/ educating the public and medical community of the widespread presence of Lyme Disease and related Co-infections in our society, I might have been diagnosed in less than 20 years.
I might not have lost most of my adult life or passed this unknowingly to my child. I might have had a chance to recover.
Contrary to popular belief, Lyme Disease and it's related co-infections exist world wide. People living in a certain geographic areas aren't "targeted" and/or "affected" and it isn't only spread by ticks. You don't "just" experience arthritic pain and you aren't "cured" by taking a few days of Doxycycline.
Perhaps, when you or someone you know or love succomb to the affects of this disease, you will find yourself "open" to writing such an article.
Until then, I and countless others will remain sick and desperately hoping for adequate diagnosis and treatment of this illness.
Posted by livinlyme (Member # 3773) on :
I wrote to my local paper on in 2003 and they posted my story: Press Enterprise: Bloomsburg PA:
Lyme Disease is Insidious-Thursday July 17,2003
My husband died in April at age 42 after fighting his entire life.Upon having an autopsy preformed for the sake of science, the one test I specifically requested them to perform was a test for Lyme disease.
The results found him to have the highest concentration of Borrelia Borgdorfi bacteria. I had the autopsy done in order to identify why my children have been chronically ill since an early age. I wanted to know and if there was something that may have been predisposed to them from birth. His DNA showed to be normal. Their illnesses included first degree heart block, bi-polar, ADHD, anxiety/depression, among other medical concerns for which there is no explanation.
Since I was found to have Lyme disease from a test in May of 2002, my health declined rapidly over the past several years. This discovery caused me to question the health of every member of my family. There have been suggestions from my parents to get tested for Multiple Sclerosis, since both my sister and I tend to have symptoms that parallel my father's. I decided to rule out whether or not my family members have Lyme Disease. Why not? It is a simple test, and having an answer is better than not having one.
One by one, I found that out of members of my family, five have a positive test. We are presently awaiting the results of the other two members. I am certain for health reasons this will most likely explain their health issues also.
Did you Know: Lyme disease can mimic , show similar symptoms to, or be confused with..Chronic fatigue syndrome, Multiple Sclerosis, Alzheimer's Parkinson's Disease , Lupus.
Symptoms of Lyme Disease can range from chronic fatigue, flu-like symptoms, headaches, joint pains, bowel disorders, to medical problems relating to the heart.
Ticks may not be seen, but they are there.
The American Dog Tick, the Lonestar Tick and the Deer tick are just a few of at least nine different species of ticks that carry the Lyme disease spirochete. Ticks and other insects can transmit more than one disease at a time(up to 20 different diseases have been noted in scientific literature.)
To remove a tick from your body, DO NOT use gasoline, Vaseline, or try warming his butt with a match. When you upset the ticks he will spit fluid into your system. To remove the little critter, grab him gently with tweezers as close to the skin as possible, and pull him out the same way he entered. Clean the site with rubbing alcohol to help prevent secondary infections.
It is NOT true that a tick must be attached for a long length of time before someone can be infected. Infection can occur within a few hours. Proper removal is essential.
To dispose of a tick . DO NOT Burn him and allow his body fluids to become air borne. DO NOT flush the tick down the toilet. The tick can live under water for a long time, and may crawl back out of the septic system into the grass . Pour the critter in a half-full bottle of rubbing alcohol with a tight lid. Be sure to mark the bottle clearly with a magic marker stating there are ticks inside, and keep it out of the reach of children.
Use insect repellants on your skin isn't always enough. For those who need regular protection, the use of the clothing treatment Permanone is very effective. A special note to hunters,,, Check your selves your clothing and your dogs before going home.
If a medical professional tells you that one two or even three weeks of antibiotics are all that are needed to cure the later stages of Lyme disease . Get another opinion from a specialist.
Relying ONLY on the blood or urine tests for Lyme disease is NOT recommended. The current test have been found to be inaccurate as a sure indicator that Lyme disease is present. False negatives are common and the standard ELISA tests that are normally preformed miss MANY cases of Lyme disease.
The department of health in Central Pennsylvania report indicates this is an endemic are for Lyme Disease.
If you would like further information concerning this disease contact any resource listed below: Head of local support group, Luke Glick, 570-374-2028 Lyme disease Association. 1888-366-6611 Linda DAgosta 570-389-0395
Linda DAgosta Bloomsburg
I was shocked after 3 months of contacting the editor he finally said he would run it!
[ 09. October 2005, 05:34 PM: Message edited by: livinlyme ]
Posted by psano (Member # 7785) on :
Good job, Linda!
Question: have you always lived in Florida, or do you think the LD was picked up somewhere else originally?
Posted by livinlyme (Member # 3773) on :
I was living in PA when I wrote that article... I just relocated to Florida this summer for reasons surrounding my health but not so much with the idea that I might run into treatment problems due to the way this state is set up medically.
I know I have had this disease since I was a very young child.... not sure if I have had it longer than that, although all members of the family are positive for it.. mom, dad (may he rest in peace), sister, sons.... grandmother, aunt...husband (may he rest in peace)