Re: Dr. Glueck, ICH/PTC & Clotting Disorders - ATTN: MATT

[Guest guest]

Let me know how it turns out. If I could find a doctor who cared

even a little bit about helping me out, then I'd order tests too. I

went to a neuroophthalmologist to be evaluated for papilledema a

couple of weeks ago, and it was the most pathetic shell game I've

been made to play yet. I don't know if I'm in the wrong state and

need to move, if I don't understand enough about how medicine is

practiced, if I need to clearly demand a diagnostic lumbar puncture

from several local doctors and leave a paper trail on my way to a

lawyer, if I need to find a sympathetic doctor out of state, or what.

>

>

> I'm seeing my doc tomorrow and I'm going to have him order the

battery of genetic tests suggested by Dr. Glueck through MDL labs.

All

the forms you need for your doc to help you ship your samples off to

the lab are on his website.

>

>

[Guest guest]

It's a serious problem. I sometimes think of moving away from here myself but then I think about trying to find a doc to prescribe the meds I need, etc. and give up the thought. I live in fear of the day my doctor retires and moves away. Matt, you can go to Cincinatti and Gleuck will do all the testing for you. It should be covered by your insurance (he doesn't ask payment up front like so many docs do). If you find you do have these coagulation issues, you may have a firmer foot to stand on when it comes to dealing with docs. Or perhaps he knows some docs in your area who would be willing to draw the blood for you. He's very well respected so someone who knows him might be willing to do it for you and perhaps that person would then be more cooperative in dxing and treating you? I'm sure if you called him he'd help you out any way he can. It's such a pathetic game we have to play, becoming undercover detectives to find docs

willing to really help. Good luck. I'll definitely let you know how it goes with my tests. I've been wanting to do this for ever, but only recently felt up to sorting out what exactly I need to do. And that's thanks to going back on Cipro. I've been warding off the migraines by taking decongestants and Benadryl almost constantly. But the sinus infection has just been getting worse and worse. The only things that helped were the betadine rinses and decongestants and Imitrex, done altogether, but there are all kinds of issues with doing that on a daily basis. About a week ago, I got desperate and decided to take some Cipro, which gave me so much relief back when I first realized that chronic infection was causing my illness. I haven't taken it in a long while for fear of tendon issues, not to mention my organisms seemed to become resistant to it back then. Well, I can't even tell you what a

turn around I've had. The sinuses are almost normalized and my energy level is way up and the headaches are gone. In just a couple of days it became night and day. Unfortunately, it probably won't last, and I'm still afraid of the cipro/tendon issue based on past experience, but I'm willing to forgo some tendons if it erases the headaches and fatigue that come with the neverending sinus infection/headache I've had (ever since my sinus surgery). Dr. Glueck does so many studies. I hope he does one on Migraines and ICH & clotting disorders. People who have migraines are at a much greater risk for stroke. It's a natural fit for him. I really hope you try to follow up with him, get the testing done. I think it could open doors for you. You might be a candidate for blood thinners. I know a number of people who've found tremendous relief from those alone. penny phagelod <mpalmer@...> wrote: Let me know how it turns out. If I could find a doctor who cared even a little bit about helping me out, then I'd order tests too. I went to a neuroophthalmologist to be evaluated for papilledema a couple of weeks ago, and it was the most pathetic shell game I've been made to play yet. I don't know if I'm in the wrong state and need to move, if I don't understand enough about how medicine is

practiced, if I need to clearly demand a diagnostic lumbar puncture from several local doctors and leave a paper trail on my way to a lawyer, if I need to find a sympathetic doctor out of state, or what.>> > I'm seeing my doc tomorrow and I'm going to have him order the battery of genetic tests suggested by Dr. Glueck through MDL labs. All the forms you need for your doc to help you ship your samples off to the lab are on his website.> >

[Guest guest]

Matt,

I went to the neuro-opthamalogist in PA. He also treats Lyme. I've seen two neurologists and my opthamologist here in Las Vegas. Bottom line is that they say lumbar puncture pressure can vary and doesn't mean a lot unless it is very high. Mine was only 210. All the tests run for infections came back negative. My nerves in the back of my eyes look healthy and do not indicate that borrelia has affected them. (My vocal cords don't work right but they look normal also.)

Bottom line is that the doctor you saw may be avoiding lumbar puncture for a very good reason - it is probably a total waste of time. But then, you might be the one who feels better after the lumbar puncture and can use that to gauge the pressure around your brain.

I tried Diamox, still had the headache and the side effects were hellish.

Now the neuro gave me Lyrica or pregabalin. It is a newer version of neurontin. It works for me. I started with 25 mg 3x a day and now take 75 mg every 12 hours. I can tell when it has been about 10 hrs as the head pressure, vertigo, brain fog gradually return. I sleep like a baby, and don't feel too foggy during the day.

I HATE THAT THE ONLY THING I CAN DO IS A BANDAID. Obviously Lyrica is fixing nothing except maybe the better sleep will help. I think that my symptoms are simply a return of the borrelia and other unknown infections. My son had the exact same symptoms when his Lyme disease flared up at age 30. They think he has had Lyme since before birth and then infected more times growing up as we all had many tick bites.

So I plan to beg the doctor to give me a couple of months of Cefdinir which is what worked for him. I don't know what else to do at this point.

a Carnes

[Guest guest]

>

> Matt,

>

> I went to the neuro-opthamalogist in PA. He also treats Lyme. I've

seen two

> neurologists and my opthamologist here in Las Vegas. Bottom line

is that

> they say lumbar puncture pressure can vary and doesn't mean a lot

unless it

> is very high.

You place great stock in the verbal statements made to you by

authority figures. " They say " is not compelling evidence to me. I

know that some of the statements made to me by my own doctors are

false. Why would I have confidence in the statements of doctors

given second hand? You say that pressure varies, as if I don't know

this. I've made this point several times before. I use the peer-

reviewed literature to scrutinize the statements of doctors. And

what did these four doctors of yours mean when they collectively

stated that LP pressure readings are nearly meaningless unless they

are " very high " . What reading did they tell you is " very high " ?

>Mine was only 210.

You left out the part about how the initial reading was 210 and then

the pressure went so low that they couldn't get enough CSF to do all

the tests they wanted to. That's unusual. By your own words (in

previous posts), this suggested a blockage between the needle in the

lower part of your spine and the cranium (whose pressure was to be

inferred from the pressure measured at the spine).

>

> Bottom line is that the doctor you saw may be avoiding lumbar

puncture for a

> very good reason - it is probably a total waste of time.

My neuroophthalmologist gave a completely different reason. His

actual statements do not support the assertion you want them to. In

the presence of papilledema, neuroophthalmologists believe that an

LP is time well spent. This statement of yours is grossly and

transparently at odds with the standard of care provided by

neuroophthalmologists and neurologists when papilledema is found.

And insofar as ICH can occur in the absence of papilledema, the

value of an investigative LP should be judged by an individual PWC

based on the various options available. There aren't many options,

so I don't think an LP is a " total waste of time " when suspicion is

high.

But then, you might

> be the one who feels better after the lumbar puncture and can use

that to

> gauge the pressure around your brain.

" The one " ? Lots of ICH patients report the LP relief I'm interested

in experiencing. But you've confused the logic. The pressure is

objectively measured. And the relief is often not experienced

unless CSF is deliberately drained. My goal in experiencing the

effects of CSF removal is not to gauge the pressure (again, the

pressure is objectively measured by the doctor) but to gauge whether

or not the pressure is a primary problem, or if it is secondary to

something else (say, Lyme or thrombophilia). Specifically, such an

experience would tell me if reduction of CSF pressure should be a

primary goal, or if some other instigating factor should be the

focus.

>

> a Carnes

>

[Guest guest]

Matt

If you are succesfull in getting a lumbar puncture, 'make sure' that

you request that every organism grown is reported and not assumed a

contaminant...I'm comfortable that many have csf leaks in the sinus's

and the organisms can possably be found in the csf.Unfortunately this

isn't a focus in LP's, basically because like many times we don't

show an immune response to many organisms in the csf, which is often

what they want to observe..I think there looking for clouding- that

can possably, more than likely, come with that immune response...

> >

> > Matt,

> >

> > I went to the neuro-opthamalogist in PA. He also treats Lyme.

I've

> seen two

> > neurologists and my opthamologist here in Las Vegas. Bottom line

> is that

> > they say lumbar puncture pressure can vary and doesn't mean a lot

> unless it

> > is very high.

>

>

> You place great stock in the verbal statements made to you by

> authority figures. " They say " is not compelling evidence to me. I

> know that some of the statements made to me by my own doctors are

> false. Why would I have confidence in the statements of doctors

> given second hand? You say that pressure varies, as if I don't

know

> this. I've made this point several times before. I use the peer-

> reviewed literature to scrutinize the statements of doctors. And

> what did these four doctors of yours mean when they collectively

> stated that LP pressure readings are nearly meaningless unless they

> are " very high " . What reading did they tell you is " very high " ?

>

>

> >Mine was only 210.

>

> You left out the part about how the initial reading was 210 and

then

> the pressure went so low that they couldn't get enough CSF to do

all

> the tests they wanted to. That's unusual. By your own words (in

> previous posts), this suggested a blockage between the needle in

the

> lower part of your spine and the cranium (whose pressure was to be

> inferred from the pressure measured at the spine).

>

>

> >

> > Bottom line is that the doctor you saw may be avoiding lumbar

> puncture for a

> > very good reason - it is probably a total waste of time.

>

>

> My neuroophthalmologist gave a completely different reason. His

> actual statements do not support the assertion you want them to.

In

> the presence of papilledema, neuroophthalmologists believe that an

> LP is time well spent. This statement of yours is grossly and

> transparently at odds with the standard of care provided by

> neuroophthalmologists and neurologists when papilledema is found.

> And insofar as ICH can occur in the absence of papilledema, the

> value of an investigative LP should be judged by an individual PWC

> based on the various options available. There aren't many options,

> so I don't think an LP is a " total waste of time " when suspicion is

> high.

>

>

> But then, you might

> > be the one who feels better after the lumbar puncture and can use

> that to

> > gauge the pressure around your brain.

>

>

> " The one " ? Lots of ICH patients report the LP relief I'm

interested

> in experiencing. But you've confused the logic. The pressure is

> objectively measured. And the relief is often not experienced

> unless CSF is deliberately drained. My goal in experiencing the

> effects of CSF removal is not to gauge the pressure (again, the

> pressure is objectively measured by the doctor) but to gauge

whether

> or not the pressure is a primary problem, or if it is secondary to

> something else (say, Lyme or thrombophilia). Specifically, such an

> experience would tell me if reduction of CSF pressure should be a

> primary goal, or if some other instigating factor should be the

> focus.

>

>

>

>

> >

> > a Carnes

> >

>

[Guest guest]

Matt,

Look for stars for my replies:

My neuroophthalmologist gave a completely different reason. His actual statements do not support the assertion you want them to. In the presence of papilledema, neuroophthalmologists believe that an LP is time well spent. This statement of yours is grossly and transparently at odds with the standard of care provided by neuroophthalmologists and neurologists when papilledema is found.

**********I don't have papilledema.

You place great stock in the verbal statements made to you by authority figures. "They say" is not compelling evidence to me. I know that some of the statements made to me by my own doctors are false. Why would I have confidence in the statements of doctors given second hand?

*********I don't place much stock at all in anyone including you. Well, I would make two exceptions - God and my husband.

a Carnes