Re: Re: Brain Research Updates/Sorry, website changed

[Guest guest]

I am writing again for several requests: I've been reading some of the emails

that come in and the topics yet no one has had the courtesy to answer my

questions, even if it's a " I don't know " .

First time I wrote I wanted to know if anyone knew of any good documentation on

the use of the SPEC Scan and the BEAM both of which were done in CA-the SPEC

being done by Dr. Mena and the BEAM done at Cedar Sinai hospital in Los Ang.

All of the neurologists of the State that I live in say, according to the

" Journal of neurology " (something like that) that these tests are not valid and

are a hoax. Well, mine came out very abnormal and I would like something to

prove their validity.

The other request I had written about was concerning the EBV tests. Is there a

new way of showing the results other than the ratio (1:####) form? mine came out

with just result showing in a regular number format; ###H, of which I've never

seen before and once again, of the many Drs I've asked in my area, NONE know

what the results mean.

Thank you for any help-

N.

Re: Brain Research Updates/Sorry, website changed

That was weird. Between the time I found this link and forwarded it, the page

changed!

It was full of great new brain research. A google search will find others tho.

Katrina

> From Katrina

>

>

> ----------

>

>

http://www.hdlighthouse.org/_scripts/PHP/menuarc.php<http://www.hdlighthouse.org\

/_scripts/PHP/menuarc.php>

>

>

>

[Guest guest]

Hi Natasha,

You may find the Internet groups are very quiet at

this time of the year and it can take days, a week or

more for replies to come through.

I dont know about the SPECT scans done in the USA but

there is information on them and CFS in the UK. See

this link.

http://www.cfids-cab.org/cfs-inform/Brainscans/richardson.costa98.txt

We have a similar problem in the UK as some doctors

refuse to recognise that these scans have any

significance or value at all.

Hope that this is useful to you.

With warmest regards,

Annette

(in London)

___________________________________________________________

ALL-NEW Messenger - all new features - even more fun!

http://uk.messenger.

[Guest guest]

Hi Annette:

Bless you Bless you; Thank you first for replying and also for the website; I'm

going to print it out for ALL of the drs (???) here.

I really do understand that it can take time for CFIDS patients to answer

emails-believe me I've had this thing since the early 80's. I had thought I was

doing better but have hit a major relapse ( I keep forgetting about these

relapses-after all these years) and because of my 'marital' status now I've lost

all of my flying privalages and the good insurance. Yes, I'm grateful for the

home that I do have and the med coverage I have-besides I'm happier now. I,

unfortunately, am not able to travel any distance to see Dr. Cheney, Dr. Lapp,

nor any other good Dr.

Happy Holidays,

Natasha

Re: Re: Brain Research Updates/Sorry, website

changed

Hi Natasha,

You may find the Internet groups are very quiet at

this time of the year and it can take days, a week or

more for replies to come through.

I dont know about the SPECT scans done in the USA but

there is information on them and CFS in the UK. See

this link.

http://www.cfids-cab.org/cfs-inform/Brainscans/richardson.costa98.txt<http://www\

..cfids-cab.org/cfs-inform/Brainscans/richardson.costa98.txt>

We have a similar problem in the UK as some doctors

refuse to recognise that these scans have any

significance or value at all.

Hope that this is useful to you.

With warmest regards,

Annette

(in London)

___________________________________________________________

ALL-NEW Messenger - all new features - even more fun!

http://uk.messenger.<http://uk.messenger./>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Hi Rich:

I'm thanking all of you that have responded with some really good info.

The Drs here don't even acknowledge my MRI's of which I've had several of which

a couple were done in different States and in different hospitals-ALL came out

abnormal BUT the 'brilliant' physicians here don't even recognize them.

There is no way that my test results could have even been diluted because the

results came out like 97, 521, etc. is this bizarre or what?

thanks for everything,

Natasha

Re: Brain Research Updates/Sorry, website changed

Hi, Natasha.

I think that the reason you have not gotten much response is that

you have asked some tough questions!

Dr. Mena was the first to report on use of SPECT scanning in CFS.

Since his report, there have been a few other reports on this

topic. They have not all shown the same results. At this point, I

don't think there is a good understanding of how to interpret the

results of SPECT scans in CFS. Various researchers have reported

finding abnormalities, but they are not the same abnormalities.

Recently Dr. Byron Hyde gave a talk that included his findings using

SPECT scanning. I reviewed his talk, and you can read the review at

http://phoenix-cfs.org/ConferenceReports.htm<http://phoenix-cfs.org/ConferenceRe\

ports.htm>

It's the next-to-last review listed on the page.

You might find his comments interesting.

If I'm not mistaken, the BEAM test is an electroencephalogram with

more electrodes than a conventional EEG. I think it's essentially

the same as quantitative EEG or qEEG. I think that one of the

earliest people in this field studying CFS was Myra Preston. Her

website is at

http://www.siberimaging.com<http://www.siberimaging.com/>

You might find some information about it there. I think that Myra's

results have been used quite a bit in disability hearings, and have

been viewed as objective evidence of brain dysfunction.

If you want to dig deeper, you can use Google to get to PubMed, and

then type in keywords such as

chronic fatigue syndrome AND SPECT

or

chronic fatigue syndrome AND BEAM

or

chronic fatigue syndrome AND qEEG

In this way, you will find abstracts of the published studies in

these areas, and you will be able to compare them. If you have

access to a medical library, you can read the complete papers.

Concerning the results of your Epstein--Barr virus testing, what was

the number? If it was something like 80 or 160 or 320 or 640, it

may be that they have just expressed the dilution titer without the

usual ratio of one to the larger number.

Rich

> I am writing again for several requests: I've been reading some of

the emails that come in and the topics yet no one has had the

courtesy to answer my questions, even if it's a " I don't know " .

> First time I wrote I wanted to know if anyone knew of any good

documentation on the use of the SPEC Scan and the BEAM both of which

were done in CA-the SPEC being done by Dr. Mena and the BEAM done at

Cedar Sinai hospital in Los Ang.

> All of the neurologists of the State that I live in say, according

to the " Journal of neurology " (something like that) that these tests

are not valid and are a hoax. Well, mine came out very abnormal and

I would like something to prove their validity.

>

> The other request I had written about was concerning the EBV

tests. Is there a new way of showing the results other than the

ratio (1:####) form? mine came out with just result showing in a

regular number format; ###H, of which I've never seen before and

once again, of the many Drs I've asked in my area, NONE know what

the results mean.

>

> Thank you for any help-

> N.

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.