posted
Hello All, I'm in Ohio...think I have Lyme...covered in what I believe is the erythema migran rash. Doctors keep telling me that "something is biting you...wash your linens...move...get your house exterminated." I can feel myself slipping into some strange realm...fighting for my joy...don't want to lose my joy but this situation is troubling to my soul. I just wanted to introduce myself. I thank God for the internet because although I heard of Lyme Disease I had absolutely NO idea of the Lyme Disease controversy...had NO idea of the suffering without help for so many people...but I guess you "don't get it until you get it"...I saw that on the mayday video. It's true. Could somebody get me up to speed on the political aspects of this whole thing...why the secrecy when asking for LLMD?...why is there no help available? 'preciate it. Good to meet you all, praying for your healing and you'll be hearing from me on these boards...that is of course, God willin' and the creek don't rise...Peace~
Posts: 33 | From ohio | Registered: May 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
-------------------- 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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Welcome preferlemons! Love your creative user name. I prefer lemons, too! lol! Just love it!
I also love how you say you do not "want to lose your joy." I told my son the other night (rough night) that Lyme was taking my heart, my soul, and my personality. But then I get up and it is a new day, and I keep fighting back. However, I truly feel like that some days, but I will not let "it" gain control! Your joy will always be with you, and allow NOTHING to rob you of your "joy."
I will share that the two greatest helps for me in gaining a nice, comprehensive and basic overview of the politics and seriousness of Lyme were a movie and a book. Really laid the foundatin for me from which sprang a TON of other research. There is no end to it, as you have probably discovered.
Under Our Skin is free to stream on Netflix now. I encourage you to watch if you can. You can google the movie name, go to there website and view excerpts, too, plus on YouTube. You can google the movie name plus Blog and you can read about it and updates, too. That movie, which was recommended to me by my middle son, even before we all knew I had Lyme, helped me to set a good foundation for further research.
A deeper look into the controversy can be gained by reading Pamela Weintraub's book, "Cure Unknown." I could not put the book down. Pamela is a science writer whose entire family ended up with Lyme Disease. Unique persepctive and very informative.
Do you remember Randy Schilt's (sp? too lazy to look it up, sorry) about the entire HIV/AIDS history and fiasco? "And the Band Played On" was a masterpiece. Weintraub's book is to Lyme what Schilt's book was to HIV/AIDS, in my and others opinions.
Finally, look at the ILADS website, which is the site my doctor wrote down for me when I was first diagnosed:
Oops! Lyme brain in action, lol. I do have one more favorite that I cannot think of right now. I will come back and post it when I think of it.
Well, forcing myself up off this couch to go walk my precious 11-year old dachshund. He is one of MY "joys," and I owe him his favorite moment of the day, so no matter how much pain and fatigue I am experiencing, I make sure he gets his walks. I owe him at least that much, because he has brought this family such joy, plain and simple.
Nice to "meet" you, and I look forward to more of your posts.
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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Ohhhh...awwwww...THANK YOU for the welcomes, information and encouragement! At this point...I am really really really trying to hold on to my joy. I'm a joyful, hopeful and happy person but this has knocked me for a loop. If I could just get some help. I have posted on the "seeking" thread (Did I? I think I did...my mind is so fuzzy lately...wow) I did get the name of a doctor though and am trying now to make some moves cuz the doc is kind of far from me...I'm on a free month of netflix and the movie is not available to me at this time. I requested to join the facebook page though. You like my name Hopesalive?? **giggle** I thought that said it well. I really do prefer lemons...limes are ok...lyme is wack and whoever brung it can take it back! hey that rhymed! Hmmm...I think my joy will be safe right here in my sense of humor! Thanks again folks...talk to you soon!
Posts: 33 | From ohio | Registered: May 2011
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posted
I have always loved anything lemon. So, yes, it caught my eye, and now I truly prefer lemons!
Shouldn't the Netflix UOS be free to stream? I know they do not have it to rent yet, but it is on the "Instant" list right now. Can't you get that on the free membership?
Someone who is not me, nor related to me, downloaded a copy for me, lol. I watched it so many times, and again with each of my three sons, separately. My boys are so understanding and they "got it" right away.
I am a very positive person, too, but I have seen how the last year has really worn me down. However, I will keep that fighting spirit. A sense of humor is GREAT! That keeps the stress level down (SO important) and anything that can keep us laughing truly can be the best medicine.
Sometimes, I will think of a situation or go through one and wonder if I should laugh or cry, but I always try to choose the former, whenever possible.
I will hope that you do get the help you are seeking, and please do keep us posted, okay?
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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posted
oh my goodness...I just checked again and the "not available" msg I read was for "under THE skin" - which was right below "under OUR skin"...different movie...LOL. IT IS AVAILABLE! thanks! Just goes to show that we must always KEEP HOPE ALIVE...**wink**...LOL. goint to watch...~peace~
Posts: 33 | From ohio | Registered: May 2011
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posted
I also love that screen name! Welcome.. I hope you are able to find the help you need!
Best of luck!
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ok, all you smarty pants people. I just thought that this person had a really weird name, but I'd try to help them anyhow.
Of course, I saw the name pronounced as pre-ferl-emons and figured it was some combo of other words.
NOW that I feel rather dorky because everyone else got it and I didn't ...
A big hey there to Lemon Lover!
Lemon Lover,
Looks like they've got great answers and lots for you to do to help educate ... so I'll just add a Welcome to LymeNet and head back to the drawing board!
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
WE welcome you to the site. It was just one year ago that I came here seeking answers: and found them. You've come to the right place.
Don't give up in your quest to find the answers. Be prepared to be shocked when you learn the hushed truth about Lyme disease.
You have an outstanding support group here. Stay tuned.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Welcome Prefer Lemons!
If you don't know this already - drinking lots of lemon water will help you detox throughout your treatment! So you should be in heaven by drinking lots of lemon..
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
LOL! Ohhhh Emmmmm Geeeeee!!!...that is funnyyyyy. maybe I should've done a capital P and L...PreferLemons...lol
Thanks for the welcome! Yes, I did get some really good info here that is getting me up to speed REAL quick!
I just watched "Under Our Skin" and I am speechless, mortified, shocked, amazed and very well enlightened. The movie is EXCELLENT! The part that just ripped my heart out was the doctor that got dementia and forgot his research!!!!!
wth?
Thanks all...
Posts: 33 | From ohio | Registered: May 2011
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Now, thanks for the laugh. And, I am laughing WITH you, because that sounds like something I would do, lol! Now, I can feel oh, so smart, because for once I "got it" right away....well, this time, anyway. haha!
Glad you were able to watch the movie, PL!
It does take time to sink in. If you google the movie title plus Blog you can read more in depth information and updates.
Alan MacDonald's story is heartbreaking.
So is Leslie Wermers, who, along with her sister, Tracy, are from my home state of Minnesota.
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So, yes, it caught my eye, and now I truly prefer lemons! ![[group hug]](graemlins/grouphug.gif)
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