So my friend works for a paper called the Long Island Press. She is a journalist there, and she is just starting out. Recently they gave her an article in the <i>"Our Children's Health Section"</i> of the paper and she wanted to write a story about my experiences with Lyme Disease and the controversies surrounding it. You can read the article online at this link:
She interviewed me, talked with IgeneX and also talked with my old LLMD on Long Island (who is good with mild cases) and with a clinical Lyme Psychologist on Long Island as well. I wanted her to interview some of you guys, but the paper is strictly for "Long Island Only."
She did a fantastic job for someone who knew nothing about Lyme when she first met me 3 months ago. She missed out on a few points here and there but overall I think the article came out great. So much more could have been said -- but this is definitly one of the most controversial articles the paper has ever written.
I am happy I could be a part of this and I hope you all enjoy seeing the true word get spoken -- even to such a small audience!
Thanks for reading!
(no snark or hard critiques please -- she did the best she could given the circumstances and the editors of the paper)
posted
Good job. I had posted this article in general support earlier for you. Don't worry, this is one of the best I have seen.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
amanda,
yes, i saw lou's post early am, and replied with the below.
OUTSTANDING JOB your friend did by the way, and i love how the TESTNG was highlited entirely and your OUT OF POCKET expenses!! really stood out.
Stefanie,
Thank you so much for the wonderful article on Amanda, who has chronic lyme disease!
When it started out, I had NO idea it was about Lyme disease until way into it.
I've had chronic lyme disease for 39.5 yrs; 34.5 years MISDIAGNOSED by 40-50 drs! UNACCEPTABLE.
Thanks for educating the public about lyme and what we go thru especially the OUT OF POCKET EXPENSES for our lyme appts., labs, meds, and all other related expenses including going out of state to find LLMDS, lyme literate mds.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Great, thorough article Amanda!!!
Stefanie did a fantastic job!!!
Congratulations on this article that I'm sure will educate others who know nothing about lyme!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
in support, someone posted another article on a 16 and 20 yr. olds w/lyme. LONGEST, most informative i've read in all the articles i've read. i was really impressed with it.
for you who NEVER go to support, please look for it and send a feedback to author too; thanks all.
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posted
I'm sending this and under our skin link to my aunt's husand and daugther to show her. She has chronic pain/fatigue and other issues. The trouble swallowing is something she also has. She lives off of blended food because she can't swallow and has been doing this for years. The rest of my family seems to think she is a bit crazy, but I think she is just sick with Lyme and/or co-infections like the rest of us.
Posts: 526 | From NJ | Registered: May 2007
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bettyg
Unregistered
posted
amanda,
your newspaper editor contacted me today for my permission to publish my above letter in your paper!
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Great story, Amanda, thank you for your efforts to educate the public - I know it must have been energy-sapping, but it came out very well. Kudos to your friend; perhaps she may want to go into science writing someday?
By the way, I checked out your website link at the end of the article, and I love your work. Your jewelry is lovely, but I also enjoyed your thesis work ("The history of the security camera and its relation to perceptions of privacy: Behaviors on the web"), and your overall design sense.
I wish you good luck. When my husband finds employment again, I will hopefully be able to purchase some of your jewelry.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
By the way, difficulty swallowing can also be from Lyme affecting one (or more) of the cranial nerves. I forget which one in particular, but I would be happy to look that up again for you if you need.
It is a very common symptom. The same cranial nerve can affect speech as well.
quote:Originally posted by nenet: By the way, difficulty swallowing can also be from Lyme affecting one (or more) of the cranial nerves. I forget which one in particular, but I would be happy to look that up again for you if you need.
It is a very common symptom. The same cranial nerve can affect speech as well.
Thanks so much for the compliments on my work. It is much appreciated!
As for the cranial nerves, I think it is 7 or 8. It is the Glossal Pharyngeal Nerve. Hopefully it improves over time!
posted
Aunt's daugther seems interested now, she wants to schedule an appointment for her mother with my LLMD so I gave her the info. Asked if she saw UOS too she was trying to go with me, but we couldn't go on the same day, unsure if she went or was just influenced by this Amanda's article. Either way glad to get through to someone!
Posts: 526 | From NJ | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Three thumbs up to you for your hard work and grand efforts!
This will reach many more folks than you can imagine.
THANK YOU!!!
Keep up the good work! We need more like you out there educating the masses.
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