He lasted longer than was predicted. And at the time I commented on his article (at the link) I had not yet developed ALS/Lyme. Had lyme since 96, but the "ALS" part came later. Wondering how long I will last.
Maybe someone should put this in the obituary thread.
Posts: 8430 | From Not available | Registered: Oct 2000
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Condolences to Jon's family and friends. I hope they feel comfort and peace soon.
Lou, my prayers are with you. I've read your posts over the years and always felt you were strong and wise. If anyone can beat this, you can.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
R.I.P. John.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
So sad. Lou, you are not alone. I too have Lyme/ALS and I didn't even know ticks could give you a disease. Went without any treatment for seven years.
-------------------- My blog about my condition - http://borreliawenttofar.wordpress.com - Diagnosed with cellular activity for Borrelia, Ehrlichia, Chlamydia Pneu. Also have the herpes simplex virus. Posts: 52 | From Sweden | Registered: Feb 2011
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posted
Scott - I am treading water with the pulsing. Not getting better, not getting worse. And it depends on keeping a line, since this is IV, and not sustainable longterm.
There seems to be a number of people that develop an ALS presentation from lyme disease, early or late. And what I don't understand is why it happens to some of us and not others.
Posts: 8430 | From Not available | Registered: Oct 2000
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canefan17
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posted
What's the difference between Lyme & Lyme/ALS
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
Lyme/ALS is when it is causing atrophy of for example your lip. When it starts taking things like your real muscles. This is a debated subject of course but I believe we need a treatment for both Lyme induced ALS.
-------------------- My blog about my condition - http://borreliawenttofar.wordpress.com - Diagnosed with cellular activity for Borrelia, Ehrlichia, Chlamydia Pneu. Also have the herpes simplex virus. Posts: 52 | From Sweden | Registered: Feb 2011
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canefan17
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posted
But isn't that still a direct cause of Lyme infection and not ALS (an idiopathic disease)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
well, i would say that ALS patients probably all test positive for lyme even though they have real ALS and not lyme Als... it could be why the abx and lyme treatment did not work...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
Sorry, I do not agree, Shabbah. I had lyme symptoms, documented bite, documented coinfections, so there is really no question it is lyme. And lyme is a neurological disease, so neuron death is part of the package for some of us. Neuron death can come inflammation that results from a chronic infection.
ALS, as was pointed out, is not a cause but a result. And lyme is one of the causes, probably not the only one.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I think the culprit as in many other neurodiseases is the chlamydia pneumonie. In my case it is present and has probably been since I was small. It is also the cause to why I never thought this was lyme. Ehrlichia is normally an easy infection to handle for the immunesystem, but when it has such a good friend in there in the name of Chlamydia, then it has something to hang on to.
-------------------- My blog about my condition - http://borreliawenttofar.wordpress.com - Diagnosed with cellular activity for Borrelia, Ehrlichia, Chlamydia Pneu. Also have the herpes simplex virus. Posts: 52 | From Sweden | Registered: Feb 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Sad about John. Prayers for his family.
Lou, my doctor says that if you improve OR "stay the same", then you are on the right track.
Staying the same, means you are not getting worse and that is a positive sign. Hang in there!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
So sorry to hear this! Blessings to his loving family.
Posts: 677 | From Virginia | Registered: Sep 2002
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canefan17
Frequent Contributor (5K+ posts)
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posted
I've read ALS can be caused by viruses.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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lyme in Putnam
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Member # 11561
posted
So sorry. When will anyone take notice? It's insane living in a controversial disease. One doc says lesions are a glitch in the machine, another says Lyme. When will this end?
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
ALS is a more advanced stage of of neurological Lyme. ANd with most people who are really sick with Lyme, Mycoplasma is also part of the picture. Have you treated that, Lou? Mycoplasma takes a very long time to get rid of, often years. (Where have we heard that before?!).
I'm sure that the Chlamydia Pneumonia is part of it, too. It's such a soup of infections, each one knocking the immune system further.
Yes, agreed. The fact that you are holding steady, Lou, is a good sign. Not easily come by.
If you ask me, we are all saints of a sort. The degree of strength, persistence and faith that it takes to just keep going is enormous. Even though we may often feel like giving up altogether.
Posts: 3771 | From around | Registered: Mar 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Tragic.
Much love to this family.
And much, much love to our Lymenet group of Lyme/ALS fighters. Keep on keepin' on!
posted
I have spoken with Jon several times. He was a fighter for sure. My thoughts and prayers are with his family.
Posts: 433 | From new york | Registered: Dec 2004
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