posted
Is IV the only way to treat neurological Lyme disease? I have facial nerve palsy, radicular (sciatica-like nerve) pain, weakness and numbness, buzzing and tingling, memory loss, and problems thinking and reasoning.
Can oral antibiotics treat this?
Posts: 311 | From CA | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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[edited to add: You asked: "Can oral antibiotics treat this?" ]
Yes, with the right combination orals can adequately address neurological lyme.
It is good to also ask about IV options if your LLMD has experience and thinks that you might be strong enough - but many have gotten better with a combination and rotation of orals.
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[ 03-11-2009, 02:06 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Janice,
I don't know if you've had a chance to read from these sources, but they are great reference tools. Many LLMDs incorporate support measures from each of the books listed below.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
keebler...when i went back to read it i saw there were 3 questions...i only thought there was one...i WISH i could fall asleep!!!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
It CAN work though it takes longer than IV or IV followed by oral (recommended). And a HECK of a lot cheaper!
I made a good recovery on just orals, though it was close call as I didn't react well to 2 families of drug known to be good in fighting Lyme infection "causing primarily neurological symptoms". (I was ++ on 18 & 93)
The abx list is short, but enough to put together 3 or 4 protocols for most people.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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lpkayak,
Hope you sleep soon. It's 3 hours earlier where I am and I'm waiting for Ellen deGeneres to be interviewed on the Tonight Show.
are you better? how long were you sick? can you remember things, find things, think again?
What was your protocol. I see you have been here as long as I have. I am just a bit improved after 6 months and struggling to find the right combo.
Did you have co-infectios. I have been clincally diagnoesed with bart.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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posted
Yes...its possible to recover from neuro lyme only on oral abx. Im living proof of that.
I was originally diagnosed with viral meningitis with encephalitis, but it turned out to be lyme encephalitis and meningitis. Ive had all sorts of neuro issues from lyme. I have done only oral abx (1 yr as of May 2009).
I started with doxy for two months, then went to the triple therapy of heavy abx for a couple months, then down to just one abx for a few months, and now I only take 1/2 of one abx a day. Im weening down to, hopefully, stopping all abx as of Aprils LLMD apptmt.
It can happen, but it doesnt mean it can work for everyone. Everyone has different levels of Bb in their body, everyone has different immune systems, everyone reacts different to abx.
Is it possible to recover from neuro lyme with orals, yes. But it doesnt mean everyone will. As with most medical treatments programs, while is wise to gain knowledge for how everyone else recovers, its important to focus on yourself and compare yourself to nobody else but you.
Good luck!!
Posts: 514 | From . | Registered: Apr 2008
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When you say neurolyme do you mean you recovered from confusion, memory problems, disorientation, cognitive things?
I know everyone is different. We are all grasping for bits of hope here.
I have pretty much only cognitive, sleep, and agitation, and derealzation. No pain, etc.
I have been in treatment on orals for six months with very little change.
I need stories like yours to give me hope.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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feelfit
Frequent Contributor (1K+ posts)
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posted
kathy,
have you treated BARTONELLA? sounds like it may be your key.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Yes, my daughter has only done orals. She has improved quite a bit in cognitive function.
Minocycline was a big help.
Posts: 2903 | From AZ | Registered: Feb 2006
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
venus- I found out about Lymenet After I made a significant recovery- in the late spring/summer of 2006. I was last (worst) infected by 2 f%#*ing adult male deer ticks stuck on my lower belly the 1st week of June 2005. TOOO long to tell the whole story here but I came down w/ bad symptoms in early Oct & diagnosed late Lyme by my PCP about a month after 1st coming to him w/symptoms.
All thanx to his persistance to get to the bottom of the issues AND my body's virulent reaction to the critters'/ pieces by the time he drew blood for the West.blots Oct 31st (!)
My Quest Diagnostics IgG was lit up like a pinball machine.( lpkayak saw it- she said 'Yikes!') On 5 different abx protocols over 1.3 years. Seeing LLMD, LLND & PCP. It was Hell.
I did have a relapse the Fall of '06 but not bad. I'm religious w/ certain herbs/supps, exercise & need Synthroid ea day now, but I'm holding my own. Not symptom-free, but 90-98% better depending on day.
Again, I could go on for pages, but suffice to say I now realize I'm 1 of the 'lucky ones'. Feel free to P.M. me.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Venus (Kathy)... When you say neurolyme do you mean you recovered from confusion, memory problems, disorientation, cognitive things?
Yes.
Obviously like all people, I have good days, and bad days, but even the bad days are way better then when this all first started.
At this point of my treatment, Im on the downside of using abx, and I believe the residual lingering symptoms are more related to the meningitis/encephalitis vs the lyme. And even those have gotten better.
Remember that everyone is different so there is no cure all answer for lyme. It really is a case of abx, supplements, rest, exercise, diet, and countering any symptoms with trx that work for you.
By 5/09 it will have been 1 full yr of abx trx, and by 11/09 it will have been 3 yrs since this all started.
I just pray that it keeps getting better and that any relapses are few and far between...!
Posts: 514 | From . | Registered: Apr 2008
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lymeparfait
Unregistered
posted
Try working on heavy metals along with the neuro lyme. I found that many of my neuro symptoms have been metals instead or a combo of both!
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yes-getting rid of metals helped me sleep and a close friend get way better cognitively-also with coordination and balance etc
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I've heard a lot about 'metal removal'. I know I have elevated levels of both mercury & lead. Both not serious, according to my ND, but still needing addressing.
I believe I will start w/ the lead & do some "chelating" this Spring, w/ the assistance of my ND.
The thing I'm very curious about is how Much my olde silver amalgums have/are contributing to this measured mercury level.
If you have a gold cap (crown), wouldn't that "seal up the metal" so it wouldn't need 2 B removed?
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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