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.
Posted by TerryK (Member # 8552) on :
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
Posted by kidsgotlyme (Member # 23691) on :
R.I.P. John.
Posted by LSG Scott (Member # 21624) on :
Lou i thought you were doing better on the pulsing ?
Posted by Caniggia (Member # 30479) on :
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.
Posted by lou (Member # 81) on :
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.
Posted by canefan17 (Member # 22149) on :
What's the difference between Lyme & Lyme/ALS
Posted by Caniggia (Member # 30479) on :
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.
Posted by canefan17 (Member # 22149) on :
But isn't that still a direct cause of Lyme infection and not ALS (an idiopathic disease)
Posted by Shahbah (Member # 28735) on :
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...
Posted by lou (Member # 81) on :
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.
Posted by clueless (Member # 30019) on :
Godspeed to Jon and family! (that's just very sad!;-(
Lou- positive vibes your way! Sounds like you been at it for awhile- keep at it!
ALS is also something I need to look at, (also dealing with alleged MS dx)
back to Newby links I go, high ho high ho!
Peace People!
Clueless
Posted by Caniggia (Member # 30479) on :
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.
Posted by sutherngrl (Member # 16270) on :
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!
Posted by imagine2 (Member # 3136) on :
So sorry to hear this! Blessings to his loving family.
Posted by canefan17 (Member # 22149) on :
I've read ALS can be caused by viruses.
Posted by lyme in Putnam (Member # 11561) on :
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?
Posted by Rumigirl (Member # 15091) on :
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.
Posted by BoxerMom (Member # 25251) on :
Tragic.
Much love to this family.
And much, much love to our Lymenet group of Lyme/ALS fighters. Keep on keepin' on!
Posted by cleo (Member # 6646) on :
I have spoken with Jon several times. He was a fighter for sure. My thoughts and prayers are with his family.