11 months of orals have not brought me back to my rollerlades, just a rollerchair. Can barely get a walker 30ft to the bathroom, need fulltime care.
Gut is better, throat and some of my chest as well.
Good foot drop left leg, ankle rash 3 years ago.
Voice unusable 7mo now. Have all the rest of the claassic ALS SX and the Lyme ones too.
Been hoping a PICC line would appear in my arm, none yet.
Wife wanted support from MDA who sent me to a Neuroduck. "LYME cannot do this" he stammered.
Then what did ya goofball??
Posted by lou (Member # 81) on :
Better hotfot it to someone who will treat more aggressively. If not a PICC, then how about bicillin shots? Give your wife something to do to take her mind off duck visiting. She can stick needles in you, and might even enjoy it, who knows. Have you been an aggravating patient? Just kidding.
Untangling ALS/Lyme is not easy. I also now have symptoms that sometimes get called ALS, but the nerve testing showed peripheral neuropathy. Adding in other lyme symptoms, it should be treatable with abx.
Don't get down too far on this road. I have the feeling that even if it is lyme entirely, not motor neuron disease, there may be a point of no return. Getting nervous about that myself. Am taking it personally when vultures are circling anywhere nearby.
(I am editing this post to mention that there are also a few reports in the medical literature of lyme causing motor neuron disease.)
[ 17. October 2006, 12:37 PM: Message edited by: lou ]
Posted by polar blast (Member # 9142) on :
you should be on iv as that is the norm..my cousin has als and he is doing fine..it stopped after he took rochephin...orals are not strong enough.. eric
Posted by imanurse (Member # 7022) on :
Dr. M in Colorado was diagnosed with ALS when he actually had Lyme and he is now treating Lyme patients. Are you able to travel or maybe get a referral to another LLMD close to your area?
I have heard of LLMD's helping lyme patients in wheelchairs walk again, so do not give up hope!
I clearly hear and understand the fear in your voice. I will keep you in my prayers and hope that you will find an LLMD who will treat you aggressively.
Posted by micul (Member # 6314) on :
quaicheng
I sent you a PM earlier today, did you get it?
Posted by bettyg (Member # 6147) on :
quaicheng, I'm so sorry to read your current story. Sending my thoughts/prayers to you/wife! Hang in there and FIGHT!
They've been wrong before! Why should they be right this time? Bettyg Posted by Lymetoo (Member # 743) on :
I agree with the others. Find a dr who will treat the lyme aggressively.
Keep those buzzards at bay! We want to keep you around a while longer, OK??!
Posted by Michelle M (Member # 7200) on :
I love your posts, Quaicheng.
Please don't give up.
Not while there is so much untried still!
Please do whatever is necessary to get to the best LLMD and start the best and most rigorous treatment.
Ignore the neuroduck. He obviously can't read or he'd know what lyme CAN do.
Michelle
Posted by lymie tony z (Member # 5130) on :
AHH SO GRASSHOPPAH, It is often said that patient must become doctor as well as teacher where lyme disease is concerned.
I agree with above remarks...especially those concerning IV medication and length of time you have to act!
Do not hesitate in this regard.You must get CHI flowing in healing direction.
good luck......zman
Posted by quaicheng (Member # 8392) on :
Thanks all,
Lou, I am an aggravating patient, proud of it.
Thanking you all for prayers, support and collective wisdom. Will keep you posted.
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