posted
Hi, My main symptoms have been neurological... Probably a result from the encephalopothy from Lyme. I've looked a bit but can't tell for certain, so I'm asking:
Is Lyme encephalopthy reversible? Even with IV abx?
Thanks! -Hause
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
How do you know the encephalopothy was cured - you had a SPECT done?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
Once I started the pt and no longer had the stiff neck or headaches. I do daily E stimulation and PT 3 days a week. The neck work has made the biggest difference for me.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
My neck is no longer stiff but I still suffer from feeling very strange - almost drunk with no inhibition and innermonologue and other cognitive issues - which I hope will be dealt with by using Rocephin.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
let's hope so... good luck you will herx but not as bad as orals.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
I never really know if I'm herxing or not... Iots not that distinct for me.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
i have lyme encephalopathy but without lesions, treating since 2 years straight now. but in my opinion... encephalopathy is the same as brain fog.. and brain fog can be caused by bartonella etc. too, not only with lyme.
by the way: i was on rocephin 3 weeks and felt no positive effect on my brainfog.. many lymies are feeling better 1-2 weeks after starting rocephin, especially when we talk about brain stuff.. but everyone is different.
you can heal your encephalopathy with orals or with i.v. .. you just have to look if your abx passes the BBB and if it goes through the brain
Posts: 371 | From velocity of light | Registered: Sep 2009
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posted
Some of the orals I've been taking do pass the BBB but I don't feel like they're in sufficient "potency" to have any real effect, given how long I've had this disease and went undiagnosed.
I'm hoping to start IV Rocephin - something a little bit stronger - and see if I make any progress.
Thanks for sharing the # of weeks most people expect to notice a difference. This is the type of info I'm looking for.
If anyone else knows anything or can share, I'd appreciate your knowledge!
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Yes, doxycycline was the best brain drug for me.
It takes time. I've had several relapses before I was diagnosed with Lyme. My brain healed in about a year each time.
Posts: 1954 | From Illinois | Registered: Aug 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Swelling of the brain due to LD, according to a lyme expert, can last even after the lyme is gone. It can take a few years for the swelling to subside.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I've been on orals for 2 years... Still huge amounts of encephalopothy per my SPECT. The related symptoms have cost me career, relationships, money, and the tiome of the last 7 years.
Anyone else know how long till your enceph / cognitive stuff changed when starting Rocephin?
-hause
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
I've been on orals for 2 years... Still huge amounts of encephalopothy per my SPECT. The related symptoms have cost me career, relationships, money, and the time of the last 7 years.
Anyone else know how long till your enceph / cognitive stuff changed when starting Rocephin?
-hause
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Have you treated co-infections? Bothe Babesia and Bartonella can cause encephalopathy.
My LLNeuro says high doses of Doxy (400mg) can be as effective as rocephhin.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
I've tested negative for both, though who knows how accurate any test is.
I can't do doxy right now b/c of the light sensitivity and the fact I'll be in the sun. I'm on zithro and ceftpodoxime.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
Anyone else observed a reversal of encephalopothy? Would love to hear from some more people...
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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