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Joined: Jan 24, 2012

Encephalitis of Unknown Origin - treatment resistant

Posted by @jemarsh, Jan 24, 2012

Hoping someone can share some experience, advice, and/or hope in figuring out what is happening with my husband.

My 33 year old husband presented abruptly with visual disturbances and delirium beginning on 1/3/12. The onset was rapid and dramatic, ocurrring in late afternoon. He had worked a normal day as a teacher, and picked up our 3 young kids after work. Symptoms struck on the ride home. I talked with those in contact with him throughout the day and they all reported he acted normally. Prior to these symptoms, he complained of difficulty sleeping and racing heart on 1/02/12; had strep throat dx 12/16/11; and had a root canal on 12/30/11. Beyond that, he has no remarkable med history and is otherwise healthy.

Since admission to the hospital he has become more and more delirious, but has short episodes of lucidity – especially following periods of rest. He has become profoundly sleep deprived, as he only gets about 2-4 hrs a sleep a night. Delirium has been accompanied by agitation and repetative limb movements, and he has complained that he can’t turn his mind off. He has become incontinent, and has difficulty eating and drinking while delirious. He has had three mild seizures, but has not experienced any more since beginning anticonvulsant medications.

Tests for bacterial and viral meningitis have been negative. He has also been tested for Wilson’s Disease, porphyria, heavy metal poisoning, HIV, and a host of other disorders. All have come back negative. EEG showed nothing remarkable, and CT and MRIs have been normal. The working diagnosis is “encephalitis of unknown origin.” The prevailing theory is that this is likely limbic encephalitis, but testing for protein markers and paraneoplastic markers in blood and CSF have not come back. He has a repeat lumbar puncture and MRI to check for changes (and I suspect to test for prion disease) tomorrow.

His current treatment regime includes anticonvulsants, sedatives, IVIG, and OTCs for fever, reflux, and constipation. He did not respond well to the use of antipsychotics to help manage the delirium. IVIG has not provided any significant improvement.

We are going on three weeks with little improvement in his condition, and while the doctors are working hard to determine the mechanisim of inflamation, they are beginning to grasp at straws. I am hoping that someone has had a similar experience and can offer some insight as to where to proceed next. I would like to keep him at his current location, but wonder if there are any other outlets I can suggest to the doctors.

Thank you for your feedback,
Jodi Marsh



Posts: 1
Joined: Feb 03, 2012
Posted by @netsites, Feb 3, 2012

My GUESS would be something to do with the strep throat and the root canal only a couple of weeks later. Our teeth are connected to different meridians in our body. Ex: People often have heart attacks after lower front teeth are worked on. That meridian is connected to the heart. Most never make the connection. When we find no answers medically, we use an EDS (electro dermal screen) The nerves in your fingers and toes tell what is going on in your body and what it takes to balance it back to normal. In fact, we use the EDS first, and always find answers. My friend was medically diagnosed with arthritis. The EDS machine told her she had Lyme’s Disease with the arthritis being a bi-product of that.You will need to do a search for an operator in your area. Prayers going your way!

Alex Simon

Posts: 179
Joined: Feb 08, 2011
Posted by @alexsimon, Feb 3, 2012

Hello – I am sorry to hear about your husbands condition. Unfortunately, Mayo Clinic cannot give out medical advice on this site. I understand that you would lke to stay at your current location – very understanable. However, if the time arises and you would like to seek treatment at Mayo Clinic in MN, FL, or AZ, please click on the “request an appointment” link on the upper right hand corner of your screen.


Posts: 2
Joined: Jan 24, 2012
Posted by @jemarsh, Feb 3, 2012

Thank you for your replies. I wasn’t necessarily looking for medical advice, but rather someone who had a similar experience and could suggest something that we had not already considered. Since my last post, Joe has begun to show signs of improvement. With the use of psychotrophic medications and high dose IV steroids. His agitation level has come down dramatically and he is at least partially lucid for longer periods during the day. His appetite is better and he is sleeping closer to 5 hours a night. The doctors seem more and more convinced tht this is likely a form of limbic encephalitis. We still don’t know if we are dealing with something post infective or paraneoplastic in nature. Repeat MRI and EEG showed no changes and normal responses, and the repeat LP showed some minor improvements in the number of white cells. We had a brain biospy this morning and will likely get results from that on Monday. We still have a LONG way to go, but we have begun to see some consistent progress in the last week. Thanks again for the feedback … I still welcome any suggestions anyone may have!

Liked by Monika J

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