Encephalitis, Lyme's, Mycoplasma??

[Colleen Johnson]

Our 24 year daughter left end of June 99 for Canada to attend a French college. Towards the end of July she started to have headaches. After returning to Kansas Aug 20, her headaches did not improve, she was very tired and her speech seemed difficult. After seeing student health doctors 4 times in 12 days we brought her home.  Her symptoms were numb mouth and tongue, headaches, dizzy whether laying down or being up, weight lose about 15lbs,short term memory, blurry vision, her fever never got above 99.3 and no energy. Sept 17 she had an MRI and was diagnosed with Acute Disseminated Encephalomyelitis, she was in the hospital for 5 days on steriods 1000ml for 5 days. She since has had two lyms's tests done, one was positive and one was negative so she is on IV rocephine for 21 days. Also her IGG showed positive for Saint Loius Encephalitis. And another Infectous Disease doctor is testing her immune system for mycoplasma.
Her symtoms were better after the steriods, but we are starting to see a decline in her condition. She is still numb around her mouth, her tongue feels to big, she is very off balance, needs assistance to walk, has no endurance, short term memory comes and goes, her fever still gets to 99.8, small headaches, labored speech and double vision.
Any suggestions would be greatly appreciated. We are still seeing doctors here, but we are not sure they have delt with conditions such as hers much or if ever.

[needhelplyme]

A related discussion, Lymes Disease Encphilitas was started.

[CCF Neuro[P] MD, RPS]

thanks for your comments.

CCF Neuro MD

[Spyro]

I have posted here before in reference to my own illness.  I am a 23 year old male and I got gradually very sick sometime in mid May and much of my illness is reminiscent of what you describe with your daughter. Awful headaches and body aches, fatigue, dry numb tongue, dizziness and nausea to the point where I couldn't understand a simple conversation.  Be reminded I reached this state so gradually that it could have been sometime in the winter when I really began to get sick.  I feel I'm on the road to recovery and although I am being treated as if I have Lyme disease, I think my recovery is attributable only to time.  Because I have up weeks and down weeks but I have finally gotten to the point where I can exercise again, go to work etc.  I would say I am functioning at 75%.  But there are still days when I feel just as I did back at the worst times.  I would advise to keep a daily log of her symptoms and overall how she feels because  improvement can be imperceptible at first.  I know how horribly frustrating and hopeless this can seem most of the time.

The best thing you can do for her right now is be supportive as my family has been for me.


Best of luck to you and your daughter.

[CCF Neuro[P] MD, RPS]

Dear Ms. Johnson:

I am sorry that your daughter is having more problems.  I think I mentioned that there will be times of worsening and times of getting better.  This entity takes awhile to recover from, some many months.  Any major medical center should have neurologist and/or pediatric neurologist that have managed encephilitis in the past.  The only recommendation concerning rehab centers is that they be well versed in neuro rehab.  This is a different type of rehab and requires experts.  I would seek the advise of neurologists in your area to find the best neuro rehab center in your area.

Sincerely,

CCF Neuro MD

[Colleen Johnson]

My daughter has had a 2nd SLE test come back positive,  so they are still quite certain it is ADEM. After the gamma globulin for 5 days her condition leveled out. Over the last week we have noticed more numbness in her lower lip, no sense of balance, dizzy again, double vision more often, and now numbness in her fingers on the left hand.
Were can we go to see a doctor who has actually treated someone that has had ADEM. We need a manual on what to look for, how to help her recover, when is it getting worse, what to expect!?!
A large part of her damage is in her cerebellum and brain stem. The 2nd MRI showed a lesion on the front of her brain that was not on the first. A 2nd spinal tap was done 10-14-99 and showed no cells or signs of inflamation.
We are checking into a rehab hospital for evaluation on Monday for a few days. What do you suggest we do or where to go?
Thank you so much in advance for any help you can give.
CMJ

[CCF Neuro[P] MD, RPS]

Dear Ms. Johnson:

Sounds like things are being managed properly.  One would not expect to see vast improvements in the brain on MRI as the lesions take time to heal.  Early on they can actually look worse.  The healing process takes time and as previously stated depends on where in the brain the lesions are located.  I do hope your daughter experiences a full and timely recovery.

CCF Neuro MD

[Colleen Johnson]

We saw the neurologist 10-6-99, since her condition was worse and not better, they repeated the MRI and most of her brain is the same, some worse. Her balance, speech, eye movement is worse.
They say it is St. Louis Encephalitis and since she has already had treatment with steriods, they are starting gamma globulin tonight for 5 days. Is there nothing else we can do for her besides supportive care?
They have discontinued the rocephin IV treatment for Lyme's Disease. We are also waiting for confirmation from the CDC on the encephalitis.

[CCF Neuro[P] MD, RPS]

Dear Ms. Johnson:

Sorry to hear about your daughter.  Acute disseminated encephalomyelitis seems to occur every year and we see approximately 5 children/adults per year.  Most of the time we do not know the etiology of the insult.  It can be all that you have suggested and then other organisms can also induce ADEM.  The recovery is usually very good after a bout with this entity.  But it varies between individuals and can take several months before complete recovery occurs (almost 90% in most series).  There will be ups and downs with the course getting better overall.  Some of our patients get better within a couple of weeks and other have taken many months to recover.  Some of it depends on the amount of insult to the brain and where it occured in the brain.  If the infection was St. Louis encephalitis there should be a high titer in the blood.  But again, when I was at the Mayo Clinic as a medical student, we would see 10-15 children on any given month during a outbreak and would just admit them for several days to make sure things were getting better and then send them home.  They all tended to get better.

I hope this helps.  Remember, there will be ups and downs but things overall will get better.

Sincerely,

CCF Neuro MD