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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme Encephalopothy is Reversible???

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Author Topic: Lyme Encephalopothy is Reversible???
thehause
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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

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prconn
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It has for me. Neck PT helped a lot for the headaches. still have brain lesions and the fatigue is slowly getting better.

Just be determined and patient. I have been treated now for 5 years.

Take care

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thehause
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How do you know the encephalopothy was cured - you had a SPECT done?
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prconn
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Yes after finishing rocephin
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thehause
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How long were you on Rocephin
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prconn
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orals 2.5 and iv 6 months
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thehause
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When did u notice the cognitive issues go away?
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thehause
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Thanks for answering my questions, btw.
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prconn
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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.
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thehause
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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.
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prconn
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let's hope so... good luck you will herx but not as bad as orals.
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thehause
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I never really know if I'm herxing or not... Iots not that distinct for me.
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thehause
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Anyone else have any input on encephalopothy?
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daniel
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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

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thehause
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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!

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CherylSue
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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.

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sutherngrl
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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.
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thehause
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I don't know... I feel like something should have been modified by now. I'm supplement heavy and otherwise "ok". Did you do Rocephin?

Can anyone else tell me when you felt better after trying IV abx?

I appreciate ur reply...

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bcb1200
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I had two small lesions which are now gonenafter 11 months of oral abx

--------------------
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 80% +/- most days.

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thehause
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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

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thehause
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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
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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 80% +/- most days.

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thehause
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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.

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thehause
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Anyone else observed a reversal of encephalopothy? Would love to hear from some more people...
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