Re: this sucks! attn Rich and all

[Guest guest]

, your title fits today's experience precisely. Actually your

article tends to fit my predicament for a year only I missed the

cruise. Here is a quote from the article that probably fits my

situation.

Dr. Gordon said. " There are many patients that have the same symptoms

following head trauma or a viral infection without previous exposure

to sailing. "

Rich, I would be happy to try the basic Yasko protocol, but my current

situation of one year duration doesn't seem to relate to cfs or Lyme.

So I don't know what to do. If I can get the emergency care I have

tried to get for a year I will certainly try the supplements. I just

don't think the supplements have anything to do with my head right now.

(My best guess is that I have several low grade reactivations of

infections, certainly EBV and probably MRSA and maybe babesia and

borrelia. This combo has caused swelling in my head and reduced spinal

fluid flow causing intracranial hypertension that cannot be measured

in a spinal tap as the flow gets closed off when they tap the spine.)

The neurologist today threw three words at me which might as well have

been in Chinese. So I asked him what they meant. One meant my pupil

was dilated in the right eye. The other meant the pupil in the left

eye might be constricted. I was so spaced out from the headache I

couldn't remember the word " vestibular " which is the nerve damage I

have had diagnosed a year ago. He decides that I don't even know if I

have vestibular nerve damage because I can only document loss of

balance. (He disrespects all other docs diagnoses.) Then when I tell

him I have documented nystagmus and my eyes also drift sideways he

gives me the big fancy name for eyes drifting sideways with a grin on

his face like aren't I smarter than you? Never mind how this symptom

might help explain what is going on.

I was so freaked that I didn't even connect that I can't possibly have

a constricted pupil in the left eye since vision in that eye is

normal. I must have a dilated pupil in the right eye because THE

VISION IN THAT EYE IS NOW DOUBLE. When I left I was told I must get

another audiology exam and that I didn't have intracranial

hypertension. Why? Because my MRI of which he doesn't have a copy is

NORMAL.

My next apointment was to be in four MONTHS. I am a nice, quiet,

polite person, so I almost started crying and said, " I am going blind

and he doesn't want me to come back for four months? "

" Oh, it will take that long to get the MRI results. "

" What are you talking about? You will have the MRI results the next

day? "

So now I have a " stroke " from freaking out.Hum, wonder if they would

take that seriously? One more tidbit, he can't see why my family

practice doc gave me Diamox since I don't have intracranial

hypertension based on the MRI he never saw.

I have had a relative and a dear friend die in Las Vegas because of

terrible medical care. I'm getting worried about myself. Hopefully I

can see the neuro-opthamologist in Reno asap.

a with a headache

>

> Make wonder on this rarity, o City of Men: a crux for the

> pathologists... stiff quiz for theodicians... a turn-on for the

> medico-sadist a-hole:

>

> http://www.nytimes.com/2007/06/12/health/12mal.html?

_r=1 & adxnnl=1 & oref=slogin & adxnnlx=1181677627-aJAOZgwspBYwnnpTPrAfcw

>

> When 71-year-old Marilyn Josselyn finished a weeklong cruise on the

> Volga River in Russia with her husband, , in 1998, she expected

> to feel like a bobbing buoy for a little while after returning to

> land. " I felt a rocking sensation, but I thought it was just the

usual

> kind of thing, " she said. But when the feeling persisted for weeks,

> then months, she began to realize something in her brain was truly

off

> kilter.

>

[Guest guest]

Hi, a.

I'm really sorry about what you're going through. I've never had

intracranial hypertension, but I've heard from two or three others

who have had it, and it sounds unrelenting. And this eye involvement

must be very worrying.

Have you actually had a spinal tap to measure the pressure of your

spinal fluid, or did they just tell you that they couldn't measure

intracranial pressure that way? My understanding is that it can be

measured that way.

Has an ophalmologist looked for bulging of the optic nerve at the

back of your eye? This is an indication of elevated pressure inside

the cranium.

For what it's worth, I don't believe that you can detect intracranial

pressure with an MRI. You could see a tumor or a hematoma which can

cause intracranial hypertension, but if it is being caused by

swelling of the brain due to an infection that the immune system is

fighting, I don't think that will show up on an MRI.

Is there any chance you could see Dan in Incline Village,

NV? He has treated quite a few viral encephalitides in CFS patients,

so he should have a lot of experience with the type of situation you

are in.

I'm not going to give you a big sales job on the methylation cycle

block treatment at this point, because I think you will have to do

something like antiviral treatment, if it is a viral infection, or

something to go after the Borrelia if it is Lyme. I do think you

could benefit from the methylation cycle block treatment, because it

would get your immune system functioning better, but I'm not sure

that even an excellent immune system can deal with an encephalitis

that has gotten going this far. Maybe it can, but I don't have

experience that says it can, so I would suggest identifying the

pathogen and trying to go after it directly, in addition to doing the

methylation cycle block treatment at some point.

A spinal tap in which they analyze a sample of the spinal fluid using

PCR will detect infections in the brain. I think Dr. is up

to speed on doing that.

I will pray for you.

Rich

>

> , your title fits today's experience precisely. Actually your

> article tends to fit my predicament for a year only I missed the

> cruise. Here is a quote from the article that probably fits my

> situation.

>

> Dr. Gordon said. " There are many patients that have the same

symptoms

> following head trauma or a viral infection without previous

exposure

> to sailing. "

>

> Rich, I would be happy to try the basic Yasko protocol, but my

current

> situation of one year duration doesn't seem to relate to cfs or

Lyme.

> So I don't know what to do. If I can get the emergency care I have

> tried to get for a year I will certainly try the supplements. I

just

> don't think the supplements have anything to do with my head right

now.

> (My best guess is that I have several low grade reactivations of

> infections, certainly EBV and probably MRSA and maybe babesia and

> borrelia. This combo has caused swelling in my head and reduced

spinal

> fluid flow causing intracranial hypertension that cannot be

measured

> in a spinal tap as the flow gets closed off when they tap the

spine.)

>

> The neurologist today threw three words at me which might as well

have

> been in Chinese. So I asked him what they meant. One meant my pupil

> was dilated in the right eye. The other meant the pupil in the left

> eye might be constricted. I was so spaced out from the headache I

> couldn't remember the word " vestibular " which is the nerve damage I

> have had diagnosed a year ago. He decides that I don't even know if

I

> have vestibular nerve damage because I can only document loss of

> balance. (He disrespects all other docs diagnoses.) Then when I

tell

> him I have documented nystagmus and my eyes also drift sideways he

> gives me the big fancy name for eyes drifting sideways with a grin

on

> his face like aren't I smarter than you? Never mind how this

symptom

> might help explain what is going on.

>

> I was so freaked that I didn't even connect that I can't possibly

have

> a constricted pupil in the left eye since vision in that eye is

> normal. I must have a dilated pupil in the right eye because THE

> VISION IN THAT EYE IS NOW DOUBLE. When I left I was told I must get

> another audiology exam and that I didn't have intracranial

> hypertension. Why? Because my MRI of which he doesn't have a copy

is

> NORMAL.

>

> My next apointment was to be in four MONTHS. I am a nice, quiet,

> polite person, so I almost started crying and said, " I am going

blind

> and he doesn't want me to come back for four months? "

>

> " Oh, it will take that long to get the MRI results. "

>

> " What are you talking about? You will have the MRI results the next

> day? "

>

> So now I have a " stroke " from freaking out.Hum, wonder if they

would

> take that seriously? One more tidbit, he can't see why my family

> practice doc gave me Diamox since I don't have intracranial

> hypertension based on the MRI he never saw.

>

> I have had a relative and a dear friend die in Las Vegas because of

> terrible medical care. I'm getting worried about myself. Hopefully

I

> can see the neuro-opthamologist in Reno asap.

>

> a with a headache

>

>

> >

> > Make wonder on this rarity, o City of Men: a crux for the

> > pathologists... stiff quiz for theodicians... a turn-on for the

> > medico-sadist a-hole:

> >

> > http://www.nytimes.com/2007/06/12/health/12mal.html?

> _r=1 & adxnnl=1 & oref=slogin & adxnnlx=1181677627-aJAOZgwspBYwnnpTPrAfcw

> >

> > When 71-year-old Marilyn Josselyn finished a weeklong cruise on

the

> > Volga River in Russia with her husband, , in 1998, she

expected

> > to feel like a bobbing buoy for a little while after returning to

> > land. " I felt a rocking sensation, but I thought it was just the

> usual

> > kind of thing, " she said. But when the feeling persisted for

weeks,

> > then months, she began to realize something in her brain was

truly

> off

> > kilter.

> >

>

[Guest guest]

Thanks, Rich. You are a good friend. I especially appreciate your

prayers. I think I have a lead on the best doctor around, and he is

in Reno. He's a neuro-opthamologist. My GP here has to send my

records before I can get an apt., and she hasn't done that yet.

I had a lumbar puncture with a starting pressure of 210 which is

high, but they don't start taking things seriously until it gets to

220. Then the flow slowed down so much they couldn't even get enough

fluid to run all the tests. I didn't even get the test for MS. I was

negative for everything they test for, but I have an elevated CRP and

elevated EBV titre. I'm getting HHV6 run asap.

My eye doctor did not see any papillary edema, but he sure freaked

out when he saw that my pupil was dilated and had double vision just

one month after an eye exam showed everything was fine. Obviously

things are not fine.

I get the impression that the two neuros I have seen think I am

exagerating because this has been going on for a year. What they

overlook is that I have been to quick care, the hospital and five

doctors with no diagnosis. I finally did get my GP to prescribe

Diamox, and it seems to help, but is not a cure. She also has me on 2

grams of Valtrex a day, but I probably need to add Valcyte and she is

a bit nervous about that at least until we see what the HHV6 looks

like.

The worst thing is trying to think - I get so confused and forget

words. The few hours and occasional day when I am headache free I

feel quite good and normal with no brain disfunction. This is

somewhat like cfs but yet again not like my past experience.

I will be away two days. I don't care how bad I feel I have a writing

critique up at Reno, and I intend to be there. I am working on a

novel, and I want to hear what they say about it. (Now you see why

they think I am not so sick. I am just too stubborn to give up and

surrender my life.)

Back Friday.

a

>

> Hi, a.

>

> I'm really sorry about what you're going through. I've never had

> intracranial hypertension, but I've heard from two or three others

> who have had it, and it sounds unrelenting. And this eye

involvement

> must be very worrying.

>

> Have you actually had a spinal tap to measure the pressure of your

> spinal fluid, or did they just tell you that they couldn't measure

> intracranial pressure that way? My understanding is that it can be

> measured that way.

>

> Has an ophalmologist looked for bulging of the optic nerve at the

> back of your eye? This is an indication of elevated pressure

inside

> the cranium.

>

> For what it's worth, I don't believe that you can detect

intracranial

> pressure with an MRI. You could see a tumor or a hematoma which

can

> cause intracranial hypertension, but if it is being caused by

> swelling of the brain due to an infection that the immune system is

> fighting, I don't think that will show up on an MRI.

>

> Is there any chance you could see Dan in Incline Village,

> NV? He has treated quite a few viral encephalitides in CFS

patients,

> so he should have a lot of experience with the type of situation

you

> are in.

>

> I'm not going to give you a big sales job on the methylation cycle

> block treatment at this point, because I think you will have to do

> something like antiviral treatment, if it is a viral infection, or

> something to go after the Borrelia if it is Lyme. I do think you

> could benefit from the methylation cycle block treatment, because

it

> would get your immune system functioning better, but I'm not sure

> that even an excellent immune system can deal with an encephalitis

> that has gotten going this far. Maybe it can, but I don't have

> experience that says it can, so I would suggest identifying the

> pathogen and trying to go after it directly, in addition to doing

the

> methylation cycle block treatment at some point.

>

> A spinal tap in which they analyze a sample of the spinal fluid

using

> PCR will detect infections in the brain. I think Dr. is

up

> to speed on doing that.

>

> I will pray for you.

>

> Rich

>

>

> >

> > , your title fits today's experience precisely. Actually your

> > article tends to fit my predicament for a year only I missed the

> > cruise. Here is a quote from the article that probably fits my

> > situation.

> >

> > Dr. Gordon said. " There are many patients that have the same

> symptoms

> > following head trauma or a viral infection without previous

> exposure

> > to sailing. "

> >

> > Rich, I would be happy to try the basic Yasko protocol, but my

> current

> > situation of one year duration doesn't seem to relate to cfs or

> Lyme.

> > So I don't know what to do. If I can get the emergency care I

have

> > tried to get for a year I will certainly try the supplements. I

> just

> > don't think the supplements have anything to do with my head

right

> now.

> > (My best guess is that I have several low grade reactivations of

> > infections, certainly EBV and probably MRSA and maybe babesia and

> > borrelia. This combo has caused swelling in my head and reduced

> spinal

> > fluid flow causing intracranial hypertension that cannot be

> measured

> > in a spinal tap as the flow gets closed off when they tap the

> spine.)

> >

> > The neurologist today threw three words at me which might as well

> have

> > been in Chinese. So I asked him what they meant. One meant my

pupil

> > was dilated in the right eye. The other meant the pupil in the

left

> > eye might be constricted. I was so spaced out from the headache I

> > couldn't remember the word " vestibular " which is the nerve damage

I

> > have had diagnosed a year ago. He decides that I don't even know

if

> I

> > have vestibular nerve damage because I can only document loss of

> > balance. (He disrespects all other docs diagnoses.) Then when I

> tell

> > him I have documented nystagmus and my eyes also drift sideways

he

> > gives me the big fancy name for eyes drifting sideways with a

grin

> on

> > his face like aren't I smarter than you? Never mind how this

> symptom

> > might help explain what is going on.

> >

> > I was so freaked that I didn't even connect that I can't possibly

> have

> > a constricted pupil in the left eye since vision in that eye is

> > normal. I must have a dilated pupil in the right eye because THE

> > VISION IN THAT EYE IS NOW DOUBLE. When I left I was told I must

get

> > another audiology exam and that I didn't have intracranial

> > hypertension. Why? Because my MRI of which he doesn't have a copy

> is

> > NORMAL.

> >

> > My next apointment was to be in four MONTHS. I am a nice, quiet,

> > polite person, so I almost started crying and said, " I am going

> blind

> > and he doesn't want me to come back for four months? "

> >

> > " Oh, it will take that long to get the MRI results. "

> >

> > " What are you talking about? You will have the MRI results the

next

> > day? "

> >

> > So now I have a " stroke " from freaking out.Hum, wonder if they

> would

> > take that seriously? One more tidbit, he can't see why my family

> > practice doc gave me Diamox since I don't have intracranial

> > hypertension based on the MRI he never saw.

> >

> > I have had a relative and a dear friend die in Las Vegas because

of

> > terrible medical care. I'm getting worried about myself.

Hopefully

> I

> > can see the neuro-opthamologist in Reno asap.

> >

> > a with a headache

> >

> >

> > >

> > > Make wonder on this rarity, o City of Men: a crux for the

> > > pathologists... stiff quiz for theodicians... a turn-on for the

> > > medico-sadist a-hole:

> > >

> > > http://www.nytimes.com/2007/06/12/health/12mal.html?

> > _r=1 & adxnnl=1 & oref=slogin & adxnnlx=1181677627-

aJAOZgwspBYwnnpTPrAfcw

> > >

> > > When 71-year-old Marilyn Josselyn finished a weeklong cruise on

> the

> > > Volga River in Russia with her husband, , in 1998, she

> expected

> > > to feel like a bobbing buoy for a little while after returning

to

> > > land. " I felt a rocking sensation, but I thought it was just

the

> > usual

> > > kind of thing, " she said. But when the feeling persisted for

> weeks,

> > > then months, she began to realize something in her brain was

> truly

> > off

> > > kilter.

> > >

> >

>