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» LymeNet Flash » Questions and Discussion » Medical Questions » Encephalopathy anyone?

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Author Topic: Encephalopathy anyone?
guiney
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My llmd says my brain SPECT showed abnormalcies in the temporal lobes: underlying encephalopathy?

only on the left side...can it spread to the other side? Hey, I have no idea about this.

I know it's an infection from my blood!?! (I think )Some help here would be nice.

I'm waiting for my llmd to call me back so I can ask her.anyway, thanx,Jamie

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lymie tony z
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I have never had the pleasure of a pet or spect scan and my MRI's have always been normal(except for some minute white dots that one llmd saw on my last mri.
I can tell you that I have suffered encephalitic or menangeal like symptoms( pain, stiffnes down right side of head into neck) and hat size changes(brain swelling and receding).
So is that evidence or neuroboreliosis infection...for my money yesiree bob.
the zman

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Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
lla2
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encephalopathy is different than encephalitis....encephalitis is an inflammation of the brain..hence the 'itis' on the end ...

encephalopathy is basically 'a problem with '..and usually means that it can cause cognitive problems...problems with memory, word recognition, etc...brain fog! My daughter had encephalopathy when she first started with dr.Jones..it caused her to have trouble studying...couldn't remember anyting, trouble finding correct words, would confuse her words, she suddenly became dyslexic and switched her letters all around adn had trouble reading ...etc...

however after abx, about a year I think, this did clear up and is now totally gone. she has finished up her senior year in high school with honors and is going on to college next year....

and you can't really ask which abx worked for her, as every person is different based on what type of infection you have, what coinfection, how much viral load you have, how strong your immune system is etc..she was always an athlete..still is , now baack playing varsity lacrosse and doing great.

I do remember the greatest improvement on ceftin (cell wall ) plaquneil and minocycline which really gets into the brain.

But it can be reversed..so it may not necessarily go to the other side....adn it's not the 'itis' which includes brain swellling in any way...OK?

hope this helps,

Lisa


Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
guiney
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Thank you for the replys. I do have brain swelling. I got confused at the end there Lisa.

Is the 'itis' mean swelling of the brain? Does that mean I have both? or do I just have that part wrong?

Thank you so much for the hope. I'm so happy for your daughter. As messed up as my brain is right now, her story gives me light at the end of the tunnel

I am very much confused, "foggy" headaches...VERY bad ones! Is this a part of it?

I put another call in to my llmd this mornig. I went to the er last night due to a stubborn migrain, and was up ALL night!!

It's 11:30am now andf I am still awake!!! I don't know if this is from the meds. they gave me or manis stuff...

I've been there too before on my last treatmenyt, haven't figured out yet.

I guess the meds. from last night have worn of so why am I still awake? I'm rambling omn...

Anyway tahnk you two for the replies, Jamie

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MarieElaine
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My 13 year old daughter has all the cognitive symptoms you described....as well as the swelling on the left side of the brain.

It all fits.

She's currently on minocyline and zithromax after all sort of antibiotics for over a year as well as a stint of IV rocephin.

Thanks for sharing the success story...I need to hear about them in order to keep from falling into despair.

Thank you!!

It seems that it may be Bartonella causing all of this...??? Did you test positive for Bartonella?

Marie


Posts: 143 | From Putnam Valley, NY. USA | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
guiney
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Hi, Marie. I was tested pos. for Mycoplasma but not Bart.(which both my llmd amd mysejf were shocked)

She said that even though it came up neg. in the one test it could very well be pos. later.

I do know this to be positive....my life is not the same nor do I beleive it will ever be the same again. I do however beleive I will improve in time and consistancy with treatment.

I feel for your daughter, but you both are in the right place here...somehow knowing your NOT alone does help.

This is a very scary disease. So much more research to be done and not enuf beleivers out there that this disease is serious and legite.

Jamie


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lla2
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PLEASE don't rely on the blood test for acurate results...PLEASE! both my kids and I tested negative Most times for bart, babs and lyme..and ended up with trreatment for all three, until we got better...

itis means inflammation, or infection of l...like appendic"itis", or cyst'Itis" (bladder infection or inflammation)....

opathy usually means there's a problem with the area, like neuropathy, (problem with nerve endings etc...not necessarily an inflammation.

doesnt mean you dont have inflammation too though. but your headaches could be caused by bartonella most defniely. i had bart adn my headaches were very severe for almost two years...do a search under my name on here adn you will see. They didn't go away until I treated them for bartonella...but again, NO POSITIVE TEST!!!

a llmd should be treating clinically based on symtoms....not by testing..too unreliable...I"m sure your llmd will treat you if youask..most do now...

Lisa


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guiney
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HO--Raskilnokov,Slow down there. You lost me back at the beginning Jamie
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