Sudden onset of neuro problems, no answers - Please Help!

JohnDoe · medicine forum Guru Joined: 14 Jun 2005 Posts: 364

My fiancé got sick at the end of December. We thought she had the flu. After
six days she started feeling better, but her headache got worse. She
described it as feeling like cold water was running over her head as if she
was in the shower, except the cold water was 'rivulets' of pain'. The pain
went from her forehead, across her scalp down to the base of the back of her
neck. The pain is constant - everyday. Better in the morning and getting
worse by evening. Mid-January she got a stiff neck so bad I had to follow
her home from work to make sure she would be OK. The stiff neck went away,
but the headache grew even worse. A friend of hers at a clinic asked her to
follow her fingers with her eyes and she could not do it. She did not even
realize that she was not moving her eyes. By February it became so bad I
took her to the ER. They ran blood tests, MRI and LP. Everything was
'normal' and the doctor suggested a neurologist because he did the 'follow
my finger' thing and she told him she was even though it was clear to us
that she was not. So we found a neurologist and he looked at her MRI and
said there was nothing wrong with her and told her to come back in a month
if she still felt bad. He gave her Valium and sent her on her way. Valium
did not begin to help her headache, but she dealt with it the best she
could. On March 8 she lost her peripheral vision. On the 9th she started
having trouble swallowing, on the 10th she lost her facial muscles - she
could not smile, stick out her tongue or suck on a straw. I took her to the
ER again and she was having difficulty walking and her right eye was getting
droopy. They gave her Imatrex and she thought her head was going to
explode - it had the opposite effect on her. By the next day she threw up
for 8 hours, lost her ability to speak and had to write me notes to
communicate. After about two hours she could not open her eyes at all. She
was able to open her eyes and speak again about five hours later. She still
had her other symptoms that seemed to get worse as the day went on. She was
released from the hospital on the 15th with no diagnosis, even though they
ran every test they could think of. She suffered for two days at home and I
took her back to the hospital again on the 17th. They put her in ICU for
four days with more blood/urine tests, MRI, CAT, LP etc. They tested for
myasthenia gravis, multiple sclerosis, guillian-barre, lyme's, encephalitis
and a ton of other things I can't pronounce - all results were negative.
They released her on the 22nd because the insurance company said 'diagnose
her or let her go'. Before she left she still had many tests that were
pending. Her neurologist suggested she might be depressed. That really upset
her because she has other things to do than hang out in the hospital. Her
hospital doctor said the neurologist was just at a loss as to the cause so
he blamed it on her. A few days later the hospital doctor called and told
her she had Rickettsia. She took the lab results to her PCP and he told her
no test for Rickettsia was ever done. Her endocrinologist said everything
was normal and suggested yet another neurologist. We sent the MRI's to a
neurosurgeon and said he found nothing out of the ordinary. Now we don't
know who or what to believe. She can deal with any diagnosis, but not
knowing is almost as hard to live with as her headache. It is not a
migraine, tension, cluster etc. Her head gets so cold that she will wear a
cap on a warm day. She has trouble walking almost every other day. Her legs
just won't work and sometimes she can't even feel them. We're running out of
ideas about where to turn for answers - no one with a degree in medicine is
managing her case. I have done a billions searches for these symptoms and
even though she has a few, not one disease fits them all. If anyone knows
how I can solve this please help. Thank you.
If this is not the correct newsgroup to post this to please let me know.

lipanz · medicine forum addict Joined: 19 Jun 2005 Posts: 62

A few days later the hospital doctor called and told
her she had Rickettsia. She took the lab results to her PCP and he told
her
no test for Rickettsia was ever done.( THIS SOUNDS VERY FISHY) Her
endocrinologist said everything
was normal and suggested yet another

Something very fishy about hospital doctor called & told her she had
Rickettsia. He wouldn't have said that for nothing. She probably does.
Her PCP probably is covering up (you would be surprised how they lie
& cover up) because probably he is cost cutting with the ins. co. she
has etc. Go back to the hospital dr. & ask for a copy of the test that
showed Rickettsia. I don't know what environment she lives in etc.
outdoors, country or what. She could have both Rickettsia & borrelia
infection. The Lyme tests are BS. The politics are terrible & getting
worse every day.
Some people are told they have rheumatoid arthritis & then pumped full
of steriods which in time compresses their immune system which also is
dangerous. Strange how one can be diagnosed with rheumatoid arthritis &
not show a rheumatoid factor in blood test yet with Lyme TWO TIERED
TESTING YET.

People have died from improperly treated or misdiagnosed lyme. They
die from the secondary symptoms that the Lyme caused or sometimes the
infection can ravage their body years after if not treated or not
properly treated & then when treated late the toxins from the killed
bacteria can cause sepsis & kill them also. I know that for a fact.
It really is a shame what the medical profession in this country has
turned into - a real sham.
I don't know where she lives but maybe someone in this group could
recommend a lyme dr. in your area.
It is terribly hard in general now to find one. Good luck -

Frank de Groot · medicine forum Guru Joined: 29 Apr 2005 Posts: 778

I am not an MD.

If she can't get help, try gradually increasing doses of doxycycline.

Start with very, very low dosages and day by day work upwards.

If she har neuroborreliosis, she will experience severe exacerbation of
symptoms followed by gradual abating over the course of months to years,
depending on the treatment.

Nutcracker · medicine forum Guru Joined: 02 Mar 2006 Posts: 318

Frank de Groot wrote:

Frank de Groot · medicine forum Guru Joined: 29 Apr 2005 Posts: 778

"Nutcracker" <nutcracker.lyme@yahoo.com> wrote

JohnDoe · medicine forum Guru Joined: 14 Jun 2005 Posts: 364

She was on tetra and then doxy for about a week each. The doctor made her
stop because he said that would put her back in the hospital.
It did make her feel a little better though.
We live in Texas. She walks the dogs in the woods twice a day. We don't
recall a bite or a rash of any kind anywhere on her. She was also a vet tech
in Colorado for a few years.

"Frank de Groot" <franciad@online.no> wrote in message
news:iPednSvibuGblvnZ4p2dnA@telenor.com...

Google