This is topic almost time for a wheel chair? in forum Medical Questions at LymeNet Flash.

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Posted by lyme-o (Member # 35115) on :
Hubbys been fighting lyme and babs for approx 14 mos. Foot drop started first. Then muscle weakness, hands and finger weakness. Air hunger, shortness of breath. Hoarseness, neck pain. Now his sense of balance is completely gone. Had a cane, now Uses a walker. When do the meds work? Hes had trouble with every IV med they have put him on. Another issue yesterday. Now off all meds until phone visit on thursday. What works? Is there anything out there that truly works? This is just absolutely bogus. I have to wonder if some of this stuff is made up.
Posted by Lymetoo (Member # 743) on :
Definite diagnosis??

Why not put your money on a trip to Germany to see Dr W?
Posted by Pony (Member # 32559) on :
Originally posted by Lymetoo:
Definite diagnosis??

I agree. It sounds like there is more going on than meets the eye...

Have you explored other causes/theories?
Posted by TF (Member # 14183) on :
Her husband has the ALS presentation. A top lyme doc has diagnosed him with lyme and babesiosis.

14 months of treatment has not shown much improvement. Last 6 months have been with a top lyme doc, aggressive treatment.

So, that is the background.

To lyme-o: So sorry to read this. Nobody can tell you when the meds will work or which meds will work. This disease is so individual.

Because if that, the docs try various meds until they hit upon one that works. So, none of it is bogus. It just might not work in your case.

I reiterate my suggestion to you to go to a doc who specializes in the ALS presentation of lyme disease. That is what I would do.
Posted by lyme-o (Member # 35115) on :
Definitely positive for Lyme. Babs clinical dx. I dont' know about Dr. W in Germany. and I don't know if theres enough money left for that. We see a top LLMD in the country. I had hoped that would be enough. Will research Dr. W Thanks
Posted by Lymetoo (Member # 743) on :
I didn't turn the corner until about year two. Slight improvement at 18 months.

and NO, it's not bogus!

[group hug]
Posted by surprise (Member # 34987) on :
I know 14 months feels like a lifetime. I know, because I'm at 14 months,

Just re-did my CD57, and it is the same since the beginning.

I'm many years left untreated/ unknown.

Keep hanging on--- keep going.
Posted by lyme-o (Member # 35115) on :
I hear ya TF. But between finances and other things, just not sure. Plus appt with "him" at end of November. I'd really like to try that one more time
Posted by Rumigirl (Member # 15091) on :
What TF said is right: you need an LLMD that deals specifically with ALS presentation of Lyme. I know of 2 that do. (I don't know who you are seeing now). PM me, if you want that info.

Unfortunately, with ALS/Lyme, it doesn't always work at all. And ALS/Lyme needs to be treated differently than Lyme without that presentation. Specifically, it needs aggressive treatment, which I

gather he has had, BUT you can't do full doses of rocephin or whatever, because the die-off can harm ALS patients.

I am so sorry to hear this. It's a very, very cruel disease, particularly with ALS.

And, no, it's not bogus. It's just that the doctors can only do so much when it has already reached a certain point. But don't give up!
Posted by dmc (Member # 5102) on :
I had/have the MS presentation of Lyme. 4 months of Tigcyl was the ticket for me. After 6 years of various oral combos with little improvements at each new protocal.

The Tigecyl, was the "over the hump" protocal for me. Rocephen did nothing for me.

Hoping & praying you & your husband finds solutions.

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