Re: Visit with the neuro-opthamologist

[Guest guest]

a

It's time to see a psychiatrist..

tony-

-- In infections , " pjeanneus "

<pj7@...> wrote:

>

> I got home from visiting family in PA late Wednesday. During this

> visit I saw a neuro-opthamologist regarding my headache, veritigo

and

> vision problem. He has some experience treating Lyme patients with

> the headache symptoms I developed 14 months ago.

>

> He did rehash some of the same issues the other two neurologists I

> have seen brought up. Then he made some suggestions - no diagnosis

at

> this time.

>

> I need to get my first MRI compared to the second one which I took

to

> him. He wants to know if the bright spots have progressed. These

> bright spots can be Lyme, MS, lupus or clogged capillaries. He

> pointed to a black spot but said nothing. He also commented on

> possible chiari. As to the eye symptoms he suggested that one had

to

> determine if the right eye pupil was larger or the left eye

smaller.

> (I assured him it was the right eye that changed, as I had an eye

> exam twice in one month - in which the right eye changed.)

>

> He wants me to see an ENT AGAIN to see if the eustachian tube is

> blocked. He discussed bruxism (which I never had before and don't

> know if I have now) and pain management.

>

> I found it curious that he encouraged me to go to UCLA where they

> DON " T look for Lyme automatically because he felt they would more

> objectively look at the various possibilities. I don't know. It

seems

> to be that this might also mean they will overlook the obvious -

the

> Lyme elephant in my brain.

>

> I feel stymied. I am thinking at this point that I will pursue a

new

> test for babesia, and see if my local doctor might put me back on

> Zithromax and Mepron again.

>

> Meanwhile the chiropractor is the best pain management I have had

so

> far in 14 months.

>

> Any suggestions are welcome.

>

> a Carnes with a headache

>

[Guest guest]

I think he's right. You can go to lyme docs for lyme. You sould go to someone who will try to dx you objectively without any preconceived biases. What docs did he say to see? Did you get specific names, or just "UCLA"? pennypjeanneus <pj7@...> wrote: I got home from visiting family in PA late Wednesday. During this visit I saw a neuro-opthamologist regarding my headache, veritigo and vision problem. He has some experience treating Lyme patients

with the headache symptoms I developed 14 months ago.He did rehash some of the same issues the other two neurologists I have seen brought up. Then he made some suggestions - no diagnosis at this time.I need to get my first MRI compared to the second one which I took to him. He wants to know if the bright spots have progressed. These bright spots can be Lyme, MS, lupus or clogged capillaries. He pointed to a black spot but said nothing. He also commented on possible chiari. As to the eye symptoms he suggested that one had to determine if the right eye pupil was larger or the left eye smaller. (I assured him it was the right eye that changed, as I had an eye exam twice in one month - in which the right eye changed.) He wants me to see an ENT AGAIN to see if the eustachian tube is blocked. He discussed bruxism (which I never had before and don't know if I have now) and pain management.I found it

curious that he encouraged me to go to UCLA where they DON"T look for Lyme automatically because he felt they would more objectively look at the various possibilities. I don't know. It seems to be that this might also mean they will overlook the obvious - the Lyme elephant in my brain.I feel stymied. I am thinking at this point that I will pursue a new test for babesia, and see if my local doctor might put me back on Zithromax and Mepron again.Meanwhile the chiropractor is the best pain management I have had so far in 14 months.Any suggestions are welcome.a Carnes with a headache

[Guest guest]

He didn't bring up UCLA, my doctor here in Vegas suggested that. I

went to this specialist in PA instead. So now he encouraged me to get

to a tertiary care center etc. But first I will get the first MRI and

get the neuro here or the radiologist to compare the two. I don't

think it will reveal anything. I don't think I am going to get a

diagnosis from any of the neuros including the one I just saw. I'm

going to have to continue to do this on my own.

I will get a babesia test run at a new lab at my expense. Then I will

get my doc here to retreat the babesia IF it shows up.

Meanwhile I will cut the Diamox pills in half and take half a dose to

see if that relieves symptoms. Also, I will continue to work on

weight loss - assuming it is intracranial hypertension caused by Lyme

infection in the brain - weight loss should help relieve the pressure

no matter what is causing the poor spinal fluid flow.

I will continue to see the chiropractor. Whatever he is doing - it is

the only thing working. Can't knock what works.

a

>

> I think he's right. You can go to lyme docs for lyme. You sould go

to someone who will try to dx you objectively without any

preconceived biases.

>

> What docs did he say to see? Did you get specific names, or

just " UCLA " ?

>

> penny

[Guest guest]

I didn't particularly asume it was Lyme. The neuro-opthamologist in

PA said that the white specks were either MS, lupus, Lyme or

atherosclerosis. He also suggested I see an ENT to see if my

eustachaian tubes are blocked.

HOWEVER, if you put together the pieces, damaged vestibular

nerve,nystagmus, severe ongoing vertigo, dilated pupil in the last 2

months with decreased vision - I don't see this as TMJ or a blocked

eustatian tube. Especially I don't see this because I have NO

congestion, no signs of any sinus infection, no hearing loss, none.

Two doctors I saw here in Las Vegas are VERY concerned that something

is VERY wrong with me. They suggested UCLA where a team of doctors

would look at all aspects of my case. This is what the PA doctor

agrees I should do - not that anyone likes UCLA - just that no one

has a clue what is wrong with me, and they want me to go to a

tertiary care center.

So I am getting more and more angry - not my usual frame of mind. I

don't have tension headaches or TMJ. I don't have a blocked eustacian

tube. I don't know what the bright spots are in my brain or why I

have nerve damage and yet the backs of my eyes are completely normal

and healthy. MY HEAD HURTS 24/7. I can't think, and I am very

depressed from the constant pain and brain dysfunction.

I was feeling somewhat better the past month while I have been on

Valtrex. Today I took a half dose of Diamox and I feel like crap -

very bad again. This leads me to think it is Lyme - either borrelia

or babesia or ??? I don't have lupus or MS. Clogged arteries in the

brain don't cause nystagmus, vertigo and vision loss.

Meanwhile I plan to do everything the PA doctor suggested BEFORE I

travel off to UCLA or anywhere else. Hey, I might try hyperbaric

oxygen.

a Carnes

>

> Tony may be right. If you don't try to get an objective evaluation

without prejudicing the docs with your views, you might as well go to

the psych.

>

> Assuming all your problems are stemming from lyme is a very big

leap when there are all kinds of bacteria and other possible causes

for your symptoms. Personally, the guy who said you may have a

blocked passage or tube or something to that effect sounded like the

only guy with 1/2 a clue who's willing to look at a variety of

possibilities. Did he make any other suggestions besides comparing

the 2 MRIs? Or is that step #1?

>

> penny

>

> p.s. Why did you mention UCLA in your post again? I'm totally

confused on that point. Still, I'm interested (regardless of who

recommended them) if he named someone in particular or just " UCLA " ?

I'm always being told to go to " UCSD " which is considered a hotbed of

medical prowess...naturally it's a huge joke.

>

>

>

>

> pjeanneus <pj7@...> wrote:

> He didn't bring up UCLA, my doctor here in Vegas

suggested that. I

> went to this specialist in PA instead. So now he encouraged me to

get

> to a tertiary care center etc. But first I will get the first MRI

and

> get the neuro here or the radiologist to compare the two. I don't

> think it will reveal anything. I don't think I am going to get a

> diagnosis from any of the neuros including the one I just saw. I'm

> going to have to continue to do this on my own.

>

> I will get a babesia test run at a new lab at my expense. Then I

will

> get my doc here to retreat the babesia IF it shows up.

>

> Meanwhile I will cut the Diamox pills in half and take half a dose

to

> see if that relieves symptoms. Also, I will continue to work on

> weight loss - assuming it is intracranial hypertension caused by

Lyme

> infection in the brain - weight loss should help relieve the

pressure

> no matter what is causing the poor spinal fluid flow.

>

> I will continue to see the chiropractor. Whatever he is doing - it

is

> the only thing working. Can't knock what works.

>

> a

>

> >

> > I think he's right. You can go to lyme docs for lyme. You sould

go

> to someone who will try to dx you objectively without any

> preconceived biases.

> >

> > What docs did he say to see? Did you get specific names, or

> just " UCLA " ?

> >

> > penny

>

[Guest guest]

Thanks, Penny. The notes on my MRI - the second one - say that my

sinuses are normal. I did have a CT scan last summer, and supposedly

it was normal. That's 2 MRIs and one CT scan in one year.

Monday I will begin again to try and get help. I'll track down the

first MRI and have the two compared. Get an apt with the ENT. I have

several apointments coming up in the next week - one with my good GP

who is open to trying things. I THINK my HHV6 came back high, and I

THINK she is going to prescribe the Valcyte. I am already on Valtrex.

I know this is not going to cure, but it may allow my immune system

to function a bit better. At this point I don't have a lot of options.

a

>

> While most ENTS are pretty useless for dealing with chronic

infection, you should see one just to get your sinuses scanned. I

know I've told you a bunch of times but I'd only had 2 sinus

infections in 20 years, and yet my scans told a very different

story, ...fully diseased sinuses. Sinus symptoms aren't necessarily

what you think they are. I only started having sinus symptoms AFTER I

had the surgery last year, which just goes to show, your body can

wall them off so well that you'd never guess there are bugs in there

making you sick.

>

> I have constant headaches now too, and the frequency of my

migraines has increased tremendously. The headaches are definitely

connected to and triggered by my sinuses, but you would never suspect

I have sinus issues by looking at me. I don't sound congested or

nasal, I don't have runny nose or eyes. No doc ever guessed I had

sinus issues. Only by chance and having a jaw CT scan did the oral

surgeon see the infection in my sinuses.

>

> You need to check them out. A CT scan is an easy thing to do. If

you don't, you could waste a lot of time and effort needlessly, if it

turns out your sinuses are causing your problems.

>

> penny

>

>

>

> pjeanneus <pj7@...> wrote:

> I didn't particularly asume it was Lyme. The neuro-

opthamologist in

> PA said that the white specks were either MS, lupus, Lyme or

> atherosclerosis. He also suggested I see an ENT to see if my

> eustachaian tubes are blocked.

>

> HOWEVER, if you put together the pieces, damaged vestibular

> nerve,nystagmus, severe ongoing vertigo, dilated pupil in the last

2

> months with decreased vision - I don't see this as TMJ or a blocked

> eustatian tube. Especially I don't see this because I have NO

> congestion, no signs of any sinus infection, no hearing loss, none.

>

> Two doctors I saw here in Las Vegas are VERY concerned that

something

> is VERY wrong with me. They suggested UCLA where a team of doctors

> would look at all aspects of my case. This is what the PA doctor

> agrees I should do - not that anyone likes UCLA - just that no one

> has a clue what is wrong with me, and they want me to go to a

> tertiary care center.

>

> So I am getting more and more angry - not my usual frame of mind. I

> don't have tension headaches or TMJ. I don't have a blocked

eustacian

> tube. I don't know what the bright spots are in my brain or why I

> have nerve damage and yet the backs of my eyes are completely

normal

> and healthy. MY HEAD HURTS 24/7. I can't think, and I am very

> depressed from the constant pain and brain dysfunction.

>

> I was feeling somewhat better the past month while I have been on

> Valtrex. Today I took a half dose of Diamox and I feel like crap -

> very bad again. This leads me to think it is Lyme - either borrelia

> or babesia or ??? I don't have lupus or MS. Clogged arteries in the

> brain don't cause nystagmus, vertigo and vision loss.

>

> Meanwhile I plan to do everything the PA doctor suggested BEFORE I

> travel off to UCLA or anywhere else. Hey, I might try hyperbaric

> oxygen.

>

> a Carnes

>

> >

> > Tony may be right. If you don't try to get an objective

evaluation

> without prejudicing the docs with your views, you might as well go

to

> the psych.

> >

> > Assuming all your problems are stemming from lyme is a very big

> leap when there are all kinds of bacteria and other possible causes

> for your symptoms. Personally, the guy who said you may have a

> blocked passage or tube or something to that effect sounded like

the

> only guy with 1/2 a clue who's willing to look at a variety of

> possibilities. Did he make any other suggestions besides comparing

> the 2 MRIs? Or is that step #1?

> >

> > penny

> >

> > p.s. Why did you mention UCLA in your post again? I'm totally

> confused on that point. Still, I'm interested (regardless of who

> recommended them) if he named someone in particular or just " UCLA " ?

> I'm always being told to go to " UCSD " which is considered a hotbed

of

> medical prowess...naturally it's a huge joke.

> >

> >

> >

> >

> > pjeanneus <pj7@> wrote:

> > He didn't bring up UCLA, my doctor here in Vegas

> suggested that. I

> > went to this specialist in PA instead. So now he encouraged me to

> get

> > to a tertiary care center etc. But first I will get the first MRI

> and

> > get the neuro here or the radiologist to compare the two. I don't

> > think it will reveal anything. I don't think I am going to get a

> > diagnosis from any of the neuros including the one I just saw.

I'm

> > going to have to continue to do this on my own.

> >

> > I will get a babesia test run at a new lab at my expense. Then I

> will

> > get my doc here to retreat the babesia IF it shows up.

> >

> > Meanwhile I will cut the Diamox pills in half and take half a

dose

> to

> > see if that relieves symptoms. Also, I will continue to work on

> > weight loss - assuming it is intracranial hypertension caused by

> Lyme

> > infection in the brain - weight loss should help relieve the

> pressure

> > no matter what is causing the poor spinal fluid flow.

> >

> > I will continue to see the chiropractor. Whatever he is doing -

it

> is

> > the only thing working. Can't knock what works.

> >

> > a

> >

> > >

> > > I think he's right. You can go to lyme docs for lyme. You sould

> go

> > to someone who will try to dx you objectively without any

> > preconceived biases.

> > >

> > > What docs did he say to see? Did you get specific names, or

> > just " UCLA " ?

> > >

> > > penny

> >

>