posted
An acquaintance of mine died in December. She was first diagnosed with ALS, and later with lyme. She tested positive for Lyme, Babesiosis and Bartonella. She became so weak at the end she couldn't walk, and for the past three years she walked with crutches. Her family never fully embraced the Lyme diagnosis as the treatment never seemed to make a difference. She did see some of the best lyme docs on the east and west coasts, but nothing seemed to help. It could be that after two years of hardcore steriods (she took them as she was first diagnosed with ALS) they did too much damage.
I am very sad. I have another friend in a similar situation--he is becoming increasingly weak and thin, and after a seven-year diagnosis of ALS and MS, he tested positive for lyme. After 9 months on IV abx, nothing has helped him. I fear the worst.
I don't know if Becky's death is recorded as a lyme death or which organization is tracking deaths. If someone can recommend where this information should be sent, please let me know.
mg
Posts: 34 | From Colorado | Registered: May 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Sorry for your loss mg. We feel the pain of
misdiagnosis with this disease. The best we can do
is fight for those that come behind us. Many are
doing a wonderful job. Sadly it is too late for the
the many who have passed.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
and contact melanie reber on the "contact us" link.
This one of my favorite poems, and I hope it provides you with a little bit of beauty in your sorrow.
The Soul at Last
The Lord's terrifying kindness has come to me.
It was only a small silvery thing--say a piece of silver cloth, or a thousand spider webs woven together, or a small handful of aspen leaves with their silver backs shimmering. And it came leaping out of the closed coffin; it flew into the air, it danced snappingly around the church rafters, it vanished through the ceiling
I spoke there, briefly, of the loved one gone. I gazed at the people in the pews, some of them weeping. I knew I must, someday, write this down.
-Mary Oliver
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
sorry to hear of the loss. My condolences to you & her family.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
my condolences i was dxd with als in november, three days after my 30th b day i had the en rash around 1.5 years ago, and a host of non-als symptoms i finallt saw a llmd who says he sees it frequently and i will recover but im still scared i pray for all those suffering and for your friends
Posts: 61 | From limbo | Registered: Nov 2009
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
sorry to hear of your loss. thoughts and prayers going out to you and her family.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I am very sorry for your loss. Thank you for sharing Becky's story with us.
Posts: 2557 | From home | Registered: Aug 2006
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posted
So sorry to hear this. You must be devastated! Give my condolences to her family... and I give my condolences to you as well.
This really bothers me:
" It could be that after two years of hardcore steriods (she took them as she was first diagnosed with ALS) they did too much damage."
That was likely a very bad thing for her. So tragic that the drs continued it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Not another lyme death.
This insanity has to stop...
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Gosh, this is really sad. It sounds as if she worked right next door to me in La Jolla.
Posts: 2232 | From USA | Registered: Aug 2009
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Steroids kill you. Never ever take steroids. I was one week on steroids and never recovered.
I didn't even know what a steroid was and got it for a shoulder pain. Steroids stay in your body for one year and this is a long time for a lyme spirochet to thrive.
I am so sorry she lost her life - because of a tragic mistake.
Posts: 1834 | From US | Registered: Oct 2008
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
MG, Thank you for sharing about Becky.
I was so touched reading the obituary of this vibrant young woman whose life was cut short. What a wonderful wife, mother and friend. She was a woman of great courage and leaves a rich legacy of love.
How beautiful the way she served her family, community and church--may the Lord reward her accordingly.
The Lord says that He IS close to the broken hearted. May His grace be sufficient moment by moment.
When it is my turn to meet my Savior and Lord Jesus, face to face, I shall look forward to meeting Becky in heaven.
Praying, Rhonda
Posts: 2188 | From Oklahoma | Registered: May 2008
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posted
so sad, i hate hearing about death and bad things that going on in the world.
because of me being sick,my stomach cannot take these kind of news, my family does not tell me if any one that we know dies or is sick, they know i cannot handle bad news.
sometimes it slips out, but news like these disturbe be greatly
like when michael jackson died, i refused to look at anything pertaining to him, or even look at the news so my tv was on something that would keep me smiling, shows like the golden girls , martin, anything comedy is all i look at until my health get better.
this site has a bad effect on me also. the stories and the hurts and pains that is mention on this site, depresses me, i have scale back coming to the site.
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