Re: Today's Visit to a New Neurologist

[Guest guest]

fantastic. you might have found a real healer for once.

>

> I went today to see a new neurologist, Dr. C. It was an edifying

> visit, and I hope the beginning of a new chapter in my search for

> medical answers.

>

> Dr. C radiates intelligence, has the most alert, perceptive gaze I

> have ever seen in a clinician. She told me more about my illness

> from simple observation than many doctors have from an arsenal of

> tests.

>

> Dr. C is well versed in neurological, late-stage Lyme disease, MS

> and Alzheimers. Listening to her think out loud about the diagnostic

> issues in my illness was fascinating.

>

> Dr. C says that yes, untreated, symptomatic Lyme disease can cause

> substantial brain volume loss. She acknowledged that it is not

> common, but pointed out that the whole presentation of my illness is

> unusually severe and typical of someone who's gone untreated with

> symptomatic Lyme for a long period. Dr. C suggested in my case that

> period probably extends back farther than 1998, when I first sought

> medical hellp for memory and concentration problems, misdiagnosed at

> the time as adult ADD.

>

> At the same time, she felt it was irresponsible not to actively

> consider both MS and Early Onset Alzheimer's, and to keep testing

> until we have a better basis for ruling those out.

>

> She performed a neurological exam and during the " follow the finger "

> test detected that my eyes weren't focusing properly, asked if I was

> seeing double. I was very impressed, because I was just opening my

> mouth to mention it when she asked. She proceeded to carefully map

> out which areas of field of vision had the worst doubling.

>

> She asked me to walk, and observed " big, visible spasms here and

> here " (pointing to my cervical and lumbar spine). She also commented

> on my gait, saying it showed extensive guarding and an ecccentric

> distribution of weight common to people who have suffered long term

> from pain along the spine.

>

> Dr. C was enthusiastic about IVIG, saying it can help with Lyme, MS

> and AD all three. She mentioned that it could be a difficult

> treatment, talked about spreading it out over more days, to give my

> body more time to adjust. We'll revisit it at my next appointment

> with her 5 weeks from now.

>

> UCSF had provided Dr. C with some notes on their findings but not

> the MRI film and neuropsych report we specifically asked for.

> Typical. We'll try to have those, as well as my other MRIs, for the

> next visit. The notes and my description of the radiology report

> seemed to give Dr. C a pretty clear sense of what we're looking at,

> though.

>

> In terms of treatment priorities, Dr. C was adamant that we must see

> me complete a good course of IV Rocephin, soon, because until that's

> been done no test can tell us much about the degree to which my

> symptoms are due to active Lyme infection in the brain. Even

> antibody levels in CSF are unreliable because they depend on the

> immune response.

>

> On Monday I have my first appointment with a pain specialist, where

> the stakes are more immediate and at this point about as urgent as

> they could possibly be. It will be a huge deal for me if that goes

> well.

>

>

>

>

>

>

>

>

[Guest guest]

That's great news ...

It shounds like it lifted your spirits considerable...

As it would anyone (to be taken seriously, and to seriously want to

help).

Barb

> fantastic. you might have found a real healer for once.

>

>

>

> >

> > I went today to see a new neurologist, Dr. C. It was an edifying

> > visit, and I hope the beginning of a new chapter in my search for

> > medical answers.

> >

> > Dr. C radiates intelligence, has the most alert, perceptive gaze

I

> > have ever seen in a clinician. She told me more about my illness

> > from simple observation than many doctors have from an arsenal of

> > tests.

> >

> > Dr. C is well versed in neurological, late-stage Lyme disease, MS

> > and Alzheimers. Listening to her think out loud about the

diagnostic

> > issues in my illness was fascinating.

> >

> > Dr. C says that yes, untreated, symptomatic Lyme disease can

cause

> > substantial brain volume loss. She acknowledged that it is not

> > common, but pointed out that the whole presentation of my

illness is

> > unusually severe and typical of someone who's gone untreated with

> > symptomatic Lyme for a long period. Dr. C suggested in my case

that

> > period probably extends back farther than 1998, when I first

sought

> > medical hellp for memory and concentration problems,

misdiagnosed at

> > the time as adult ADD.

> >

> > At the same time, she felt it was irresponsible not to actively

> > consider both MS and Early Onset Alzheimer's, and to keep testing

> > until we have a better basis for ruling those out.

> >

> > She performed a neurological exam and during the " follow the

finger "

> > test detected that my eyes weren't focusing properly, asked if I

was

> > seeing double. I was very impressed, because I was just opening

my

> > mouth to mention it when she asked. She proceeded to carefully

map

> > out which areas of field of vision had the worst doubling.

> >

> > She asked me to walk, and observed " big, visible spasms here and

> > here " (pointing to my cervical and lumbar spine). She also

commented

> > on my gait, saying it showed extensive guarding and an ecccentric

> > distribution of weight common to people who have suffered long

term

> > from pain along the spine.

> >

> > Dr. C was enthusiastic about IVIG, saying it can help with Lyme,

MS

> > and AD all three. She mentioned that it could be a difficult

> > treatment, talked about spreading it out over more days, to give

my

> > body more time to adjust. We'll revisit it at my next appointment

> > with her 5 weeks from now.

> >

> > UCSF had provided Dr. C with some notes on their findings but not

> > the MRI film and neuropsych report we specifically asked for.

> > Typical. We'll try to have those, as well as my other MRIs, for

the

> > next visit. The notes and my description of the radiology report

> > seemed to give Dr. C a pretty clear sense of what we're looking

at,

> > though.

> >

> > In terms of treatment priorities, Dr. C was adamant that we must

see

> > me complete a good course of IV Rocephin, soon, because until

that's

> > been done no test can tell us much about the degree to which my

> > symptoms are due to active Lyme infection in the brain. Even

> > antibody levels in CSF are unreliable because they depend on the

> > immune response.

> >

> > On Monday I have my first appointment with a pain specialist,

where

> > the stakes are more immediate and at this point about as urgent

as

> > they could possibly be. It will be a huge deal for me if that

goes

> > well.

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I continue to hear good things about intensive IVIG treatments as

well.

One of our list members hasn't reported for a while, but I hear from

a friend who recently saw her that she's doing better than she has

ever done. That she looks and acts completely different. Has tons of

energy, etc. She's treating lyme, chronic osteomyelitis and chronic

pain with the IVIG.

I think the tricky part is getting the dx so that insurance will pay

for it but I would really like to try it.

I looked at my IgG and IgA levels from a couple of years ago. The

IgG was borderline low and the IgA was way high. Apparently high IgA

can be implicated in anything from infection to diabetes. Of course,

the doc who ordered the tests saw nothing to be concerned about. :-(

That was the famous, exorbitantly expensive Rheumatologist from

Riverside who x-rayed me from head to toe, then prescribed a bunch

of expensive fibromyalgia supplements and concluded that all I need

is more sleep. :-(

I also reviewed one of my blood test panels from late last year, and

suddenly notice that both my RBCs and my hemoglobin are both out of

range - low.

I'd love to give my body a fighting chance with the IVIG.

penny

>

> Dr. C was enthusiastic about IVIG, saying it can help with Lyme,

MS

> and AD all three.

[Guest guest]

Hi S

Wow, how often do we come across neurologists like this, they seem to

be a rare breed.

At long last you have found someone who not only understands what is

going on but who is going to this as thoroughly as it should be; it

looks at though you are in safe hands at last. Good luck with your

pain specialist appt too, I hope that goes as well.

My Dr, who is also carrying out important research, has spoken about

the incidence of ADD prior to borreliosis being Dx.

Cheers, Tansy

>

> I went today to see a new neurologist, Dr. C. It was an edifying

> visit, and I hope the beginning of a new chapter in my search for

> medical answers.

>

> Dr. C radiates intelligence, has the most alert, perceptive gaze I

> have ever seen in a clinician. She told me more about my illness

> from simple observation than many doctors have from an arsenal of

> tests.

>

> Dr. C is well versed in neurological, late-stage Lyme disease, MS

> and Alzheimers. Listening to her think out loud about the

diagnostic

> issues in my illness was fascinating.

>

> Dr. C says that yes, untreated, symptomatic Lyme disease can cause

> substantial brain volume loss. She acknowledged that it is not

> common, but pointed out that the whole presentation of my illness

is

> unusually severe and typical of someone who's gone untreated with

> symptomatic Lyme for a long period. Dr. C suggested in my case that

> period probably extends back farther than 1998, when I first sought

> medical hellp for memory and concentration problems, misdiagnosed

at

> the time as adult ADD.

>

> At the same time, she felt it was irresponsible not to actively

> consider both MS and Early Onset Alzheimer's, and to keep testing

> until we have a better basis for ruling those out.

>

> She performed a neurological exam and during the " follow the

finger "

> test detected that my eyes weren't focusing properly, asked if I

was

> seeing double. I was very impressed, because I was just opening my

> mouth to mention it when she asked. She proceeded to carefully map

> out which areas of field of vision had the worst doubling.

>

> She asked me to walk, and observed " big, visible spasms here and

> here " (pointing to my cervical and lumbar spine). She also

commented

> on my gait, saying it showed extensive guarding and an ecccentric

> distribution of weight common to people who have suffered long term

> from pain along the spine.

>

> Dr. C was enthusiastic about IVIG, saying it can help with Lyme, MS

> and AD all three. She mentioned that it could be a difficult

> treatment, talked about spreading it out over more days, to give my

> body more time to adjust. We'll revisit it at my next appointment

> with her 5 weeks from now.

>

> UCSF had provided Dr. C with some notes on their findings but not

> the MRI film and neuropsych report we specifically asked for.

> Typical. We'll try to have those, as well as my other MRIs, for the

> next visit. The notes and my description of the radiology report

> seemed to give Dr. C a pretty clear sense of what we're looking at,

> though.

>

> In terms of treatment priorities, Dr. C was adamant that we must

see

> me complete a good course of IV Rocephin, soon, because until

that's

> been done no test can tell us much about the degree to which my

> symptoms are due to active Lyme infection in the brain. Even

> antibody levels in CSF are unreliable because they depend on the

> immune response.

>

> On Monday I have my first appointment with a pain specialist, where

> the stakes are more immediate and at this point about as urgent as

> they could possibly be. It will be a huge deal for me if that goes

> well.

>

>

[Guest guest]

Hi ,

> ...1998, when I first sought medical hellp for memory and concentration

> problems, misdiagnosed at the time as adult ADD.

I wish you had been on the now-defunct sassafras list at that time. There

was a psychiatrist on the list who said she was practicing on Cape Cod when

she suddenly had a ton of referrals for adult ADD. She did careful workups,

sent them to Boston for MRIs, concluded they had Lyme, and sent them to Lyme

specialists.

She is also the first person I ever knew who insisted that CFS and Lyme

Disease were clinically identical, and she was a tremendous help to us in

finding a good doctor.

It sounds as though you are on your way now, and I'm so relieved that you

are getting help.

Meanwhile, I've decided to nominate you for the (unpaid) post of Writer in

Residence at I & I University.

Sue ,

Upstate New York