my lyme tests are basically negative (even igenex (technically speaking). MDL myco +
Sx like crazy, sick for months, can't function, 10 mo. old baby.
3 LLMDs said neurolyme. i am sicker than i ever thought possible and don't know which way to turn (dragging feet).
1st LLMD: rifampin/biaxin/IM bicillin (after 1 mo doxy 400 oral which did nothing). can start this week.
other LLMD says wait to see how biaxin alone works + neurontin, lyrica, cymbalta, plaquenil, tryptophan, add IV doxy mid Nov
other LLMD says ceftin, cipro then add IV doxy.
HELP??????? i am desperate and not sure what to do...
anyone think bicillin IM could work for someone SO sick - or do i wait for IV?
tx tons...
Posts: 32 | From east coaster | Registered: Aug 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
PM sent.
Best wishes to you. And remember, the beginning of treatment can be tough for some, due to fatigue especially; hope you can get some rest during this time!
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
1st LLMD: rifampin/biaxin/IM bicillin (after 1 mo doxy 400 oral which did nothing). can start this week.
best choice.
2nd llmd just treating symptoms, biaxin alone isnt going to do it.
3rd llmd good combo, id do that too. cipro for Cos, doxy for lyme.
1st one tho still, best choice.
add flagyl or tindi somewhere in that mix and you should be good after 6 months to a year. rotate the biaxin with roxy or ketek and sub the rifampin out for bactrim at some point. stay on 1.2 M bicillin 3x week the whole time.
good luck
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I have neuro Lyme and the Rocephin was great for me.
I had weeks at a time where I didn't feel any symptoms at all.
I would still be on it if not for gallbladder problems.
I hope to go back on it soon since the orals are not helping.
I was on Bicillin 3X weekly for almost four months and had no improvement.
Everyone reacts to different meds so I would be willing to try anything that might help.
Posts: 343 | From North Carolina | Registered: Oct 2008
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is anyone ever debilitated for 1 yr with neuro lyme and cured without IV???
just wondering...
tx...
Posts: 32 | From east coaster | Registered: Aug 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, I was disabled with neurolyme for more than one year, and am much better, without IV.
I have been on strong oral abx and almost a year of IM bicillin.
It takes a long time, for me, over 2 years, for the worst of the neurosymptoms to really go away. I am still not 100% but I am very optimistic and getting better -- still -- all the time!
I would have done IV, but for the great expense.
Posts: 2557 | From home | Registered: Aug 2006
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ByronSBell 2007
Unregistered
posted
If you have neurolyme, it is almost a "must" for IV's
One of my friends in treatment with me has bad neuro lyme and has been on IV's for 5 months now along with alot of orals, heparin, biofeedback, ect. He is much better but still has a ways to go.
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posted
Can i just say that you gusy, lymenet, is what keeps me going, keeps me hoping (which is hard to come by), even in my darkest hours?
thx thx thx... beyond words.
Posts: 32 | From east coaster | Registered: Aug 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hang in there bullrun! It really can take great faith to keep treating when it can take a long time to see progress, I know. And treatment isn't always easy in the beginning. But it does its work over time.
Regaining your health is really worth it, it is kind of like being reborn! I agree with Byron, IV is a good treatment for bad neurolyme. Sounds like your first llmd has a good protocol too.
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