SPECT scans

[Guest guest]

There are at least five tests that are cheaper (see

http://www.folkarts.com/idef/diagnosis.htm ) - two of which results in a

specific treatment protocol if positive. The CFSUM1 urine marker is used in

Australia as an indicator....

Ken

[Guest guest]

Joan,

I'm sorry about your Spect Scan report, but that may be good in a way. It

means the antibiotics may be able to get into your brain. I don't understand

why they can't figure out a way to get medicine into the brain. If the

bacteria can get in, why can't they just inject medicine into our brains,

Ouch, I know it will hurt, but there has to be a way to eradicate this or

any bacteria in the brain.Amazing to me that we have to get so sick to get

any help at all. Hang in there, I know its scary. I haven't had a scan yet,

because my doctor doesn't have the resources. But as soon as my insurance is

changed (Jan) I plan to go to a good neurologist. Good luck to you. Hang in

there, we are starting to make some noise and I truly believe there are

people in the back ground still working on this. Just imagine, if we find

all this fascinating (although wish we didn't have it), some bacteriologist

must also find it fascinating, and maybe they are quietly working on a cure

so they will win a Nobel prize. I don't care if they are only in it for the

fame and fortune, as long as they come up with a cure.

Sorry - I ramble so much when I don't know what to say completely. Just hope

you are feeling better and not worrying too much. Vicki, Md

>I just read my Spect Scan report...very disturbing... " Moderate to severe

>hypoperfusion with heterogeneity and white matter disease consistent

>with vasculitis, encephalitis. or Lyme disease " ...oh well.

>Take care,

>Joan LI NY

>

[Guest guest]

In a message dated 99-12-07 15:08:37 EST, you write:

<< Hi Vicki,

Concerning Spect Scans, you mentioned that you haven't had one yet

because your doc doesn't have the resources...what about a hospital?

Thanks for all of your support!

Joan LI NY

>>

Dear Joan & Vicki,

My daughter had one (normal - thank God), but have heard that there is a

tremendous amount of deviation in spect scan equipment - you'll want to

ensure you are being scanned by state-of-the art machine, otherwise,

specialists won't be able to help much (if you take to specialist for

interpretation).

Hope this helps!

[Guest guest]

My understanding of SPECT scans is that it has to be done by a 3 headed

machine and read by a lyme literate radiologist. Boston University Medical

Center apparently can do this. Most scanners have 2 heads.

Happy

[Guest guest]

Hi Vicki,

Concerning Spect Scans, you mentioned that you haven't had one yet

because your doc doesn't have the resources...what about a hospital?

Thanks for all of your support!

Joan LI NY

[Guest guest]

In a message dated 12/4/99 5:29:56 PM EDT, ferraroa@... writes:

<< I just read my Spect Scan report...very disturbing... " Moderate to severe

>hypoperfusion with heterogeneity and white matter disease consistent

>with vasculitis, encephalitis. or Lyme disease " ...oh well.

>Take care,

>Joan LI NY >>

WOW JOAN,

My Spect says the EXACT same thing !!! I can't believe it !!

[Guest guest]

Joan and Diane.. so sorry to hear about your test results.. had my blood

results back today.. neg.. as I expected.. so now doc saying no Lyme.

Do u have heart burn.. I have been having terrible heartburn lately.. never

had heart burn before.. also have leaky valve.. (aorta valve) along with

lots of other symptoms.

Good luck to u both and God bless

Bridie.. Ma

[Guest guest]

In a message dated 12/8/99 11:44:59 PM EDT, Mama101@... writes:

<< Do u have heart burn.. I have been having terrible heartburn lately >>

Hi Bridie,

Thank you ...

Yes I do get horrible heartburn, but then I have a terrible G.I. Tract.

esophaghitis,gerd,peptic ulcer.. works. I take prevacid, librax and levsin

and that keeps it under control. Sometimes the chest pain feels like I'm

having a heart attack. Its bad ! Sorry you have to be going throught that

too. Try the prevacid. Its great stuff.

[Guest guest]

In a message dated 99-12-08 22:44:59 EST, you write:

<< had my blood

results back today.. neg.. as I expected.. so now doc saying no Lyme. >>

Did doc order whole, live blood test & culture? What about LUAT? Here's a

site on culture tests:

<A HREF= " http://members.tripod.com/torski/Lyme/Lyme-Culture.html " >Lyme

Culture Medium</A>

[Guest guest]

Thanks for info.. am gonna ask doc for Prevacid..I to have Gastroparesis.. so

I`m sure that don`t help.. and the chest pain is alful.

Thanks

Bridie

[Guest guest]

Thanks for info.. not sure what type of blood tests he has done.. but going

to nuero tomorrow as the left side of my face and lips are going numb.. never

had this before.. so it`s very scary to me.

Thanks for info and will ask nuero tomorrow.

Bridie

[Guest guest]

Marta.. thank u... thats exactly how it feels... it`s not as bad today.. but

still there... am gonna see my nuero today... hopefully he will do something

What is Herxing?

Thanks again.. and also am very proud of all you that went to the protest..

job well done.

God bless.. and may the new yr bring good health to all of us.

Bridie

[Guest guest]

Bridie,

Just one to let you know that most of us have had that one sided

numbness, mine was left side too. It feels like Novocain wearing off....I

hope the neuro understands it as most of the jerks I saw told me it was in

my head. It has something to do with cranial nerves, not sure exactly how

it works, the good news is it goes away, but may recur when herxing.

Hugs,

Marta NJ

>From: Mama101@...

>

>Thanks for info.. not sure what type of blood tests he has done.. but going

>to nuero tomorrow as the left side of my face and lips are going numb..

never

>had this before.. so it`s very scary to me.

>Thanks for info and will ask nuero tomorrow.

>Bridie

>

[Guest guest]

Thanks Joan,

LYME BRAIN - I keep forgetting to ask about that. I think I'll print this

and take it to my next appointment and see what he says. Thanks Vicki, Md

-

>From: DobeLovr1@...

>

>In a message dated 99-12-07 15:08:37 EST, you write:

>

><< Hi Vicki,

> Concerning Spect Scans, you mentioned that you haven't had one yet

> because your doc doesn't have the resources...what about a hospital?

> Thanks for all of your support!

> Joan LI NY

[Guest guest]

Hi, Everyone,

I'm to have a brain SPECT scan later in January. For those who have had

one, what is it like?

Thanks - Marie

[Guest guest]

Hi Marie,

I just had a Brain Spect last week. They inject a die into your arm. You

wait about an hour or so and then they scan you. You lay on a table and the

machine goes around your head and scans. It really wasn't that bad at all.

Good luck with everything. And if you need anything- I am here.

[Guest guest]

Hi Vicki,

I am pretty certain the injection for the Spect is in your arm, I didn't

have one, but I did have the PET scan which I think is similar. Yes, you

must go to Columbia to have that Spect done, otherwise you wasted time and

money I have heard. Thanks for yours and everyone's kind words about my

Dad, he was sitting up in a chair yesterday, little pain. I will go visit

him today. Good luck with the MRI....I always keep my eyes closed the

entire time and it really works to rid you of the panic feelings.

Hugs,

Marta

-----Original Message-----

From: Vicki Ferraro <ferraroa@...>

>especially with Lymies. I go for my MRI tomorrow, and as per Dr. Orens &

Dr.

>B's recommendations, I'm going to ask for a referral to Dr. Fallon for a

>SPECT. Dr. Orens was so sweet, told me " My dear, only get your SPECT at

>Columbia in N.Y. from Dr. Fallon " . From what I understand the MRI shows

>structure of the brain and can detect injuries, and the SPECT show function

>of the brain, and detects blood flow, etc. So both doctors recommended

both,

>but said if I had to choose, get the SPECT. Was that injection of whatever

>they inject before the SPECT painful? Was it through IV, or what. I'm just

>so scared they're going to inject it directly into my brain via my skull,

>ouch!!!!!!! Glad your dad did well. Hope you are getting some rest, doesn't

>look like it though. Hugs, Vicki , MD

[Guest guest]

Marta,

Thanks for the advice on the MRI. I have slight claustrophobia, so closing

my eyes is a good idea. Thanks. And so happy your father is doing so well.

Sounds like you come from very strong stock! have a good day. Vicki, Md

>Hi Vicki,

> I am pretty certain the injection for the Spect is in your arm, I didn't

>have one, but I did have the PET scan which I think is similar. Yes, you

>must go to Columbia to have that Spect done, otherwise you wasted time and

>money I have heard. Thanks for yours and everyone's kind words about my

>Dad, he was sitting up in a chair yesterday, little pain. I will go visit

>him today. Good luck with the MRI....I always keep my eyes closed the

>entire time and it really works to rid you of the panic feelings.

>Hugs,

>Marta

[Guest guest]

Yes, I had a SPECT scan. From Columbia Presbyterian in NYC.

I learned I had bilateral hypoperfusion in the brain indicative of Lyme

disease, encephalitis or vasculitis.

I had already been diagnosed from clinical symptoms and a positive PCR, but

the SPECT scan did get my insurance company to spring for IV antibiotics

(for the need to cross the blood-brain barrier. They cut me off a four

weeks, but at least they did something (I've been continuing on my own with

the IV).

It explains a lot about my depression, ADD, CFS, memory loss, spatial

disorientation and loss of vocabulary.

Ken

[ ] SPECT scans

> Hi all,

>

> Has anyone on this list had a SPECT scan? If so, did you learn anything

> important from it? Did it help your doctor diagnose your disease--either

to

> confirm Lyme or to say that you didn't have it? Where did you have it

done?

>

> I corresponded with a Cape Cod man a year or so ago whose blood tests kept

> coming back negative, so his doctor started sending him for SPECT scans. I

> got the impression that they were instrumental in making his diagnosis.

>

> Incidentally, he was doing quite well at the time we corresponded. He'd

> been diagnosed with Attention Deficit Disorder, and had a smart Cape Cod

> psychiatrist who noticed that suddenly a LOT of her patients were being

> diagnosed ADH. This psychiatrist insisted that he be tested repeatedly for

> Lyme.

>

> Best,

> Sue B.

> upstate New York

>

>

>

>

> Many thanks to our founder and friend, Marta McCoy, for making

the support group it is today.

>

>

> Easy Reference:

> Send a blank email message to:

>

> -Subscribeegroups - Subscribe to the list through email

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> Please send messages not related to Lyme disease to

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>

> Archives can be accessed at lyme-aid

>

> Please visit the sister site at

> http://clubs./clubs/lymeaid

> This is the primary chat site for .

>

>

>

[Guest guest]

hi....i got SPECT scans(3) in oct '98 at MUSC (med univestiy s.carolina..was

getting brain magnetic treatement for depresion .it sohowed on the scans.

There are some radiologist who know about lyme and the brain and use that

information to read the

SPECT films....it's not adhd..alone...lyme causes adhd.

The brain MRI and the SPECT showed i was a reaponder to rTMS treatment.

it increased the BBB..

cherlyme (i need more BBB)

In a message dated 10/21/00 9:14:56 AM, rhbailey@... writes:

<<Hi all,

Has anyone on this list had a SPECT scan? If so, did you learn anything

important from it? Did it help your doctor diagnose your disease--either to

confirm Lyme or to say that you didn't have it? Where did you have it done?

I corresponded with a Cape Cod man a year or so ago whose blood tests kept

coming back negative, so his doctor started sending him for SPECT scans. I

got the impression that they were instrumental in making his diagnosis.

Incidentally, he was doing quite well at the time we corresponded. He'd

been diagnosed with Attention Deficit Disorder, and had a smart Cape Cod

psychiatrist who noticed that suddenly a LOT of her patients were being

diagnosed ADH. This psychiatrist insisted that he be tested repeatedly for

Lyme.

Best,

Sue B.

upstate New York

Many thanks to our founder and friend, Marta McCoy, for making the

support group it is today.

Easy Reference:

Send a blank email message to:

-Subscribeegroups - Subscribe to the list through email

-Unsubscribeegroups - Unsubscribe from the list

-Digestegroups - Switch your subscription to a digest format

-Normalegroups - Switch your subscription to normal

Please send messages not related to Lyme disease to

-Offtopicegroups

Archives can be accessed at lyme-aid

Please visit the sister site at

http://clubs./clubs/lymeaid

This is the primary chat site for .

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Subject: [ ] SPECT scans

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>>

[Guest guest]

Sue,

Only the luckiest Lyme patients get positives on their Lyme tests. The

tests are semiworthless.

My brain SPECT showed " moderately severe global hypofusion " and the dx by a

nonLLMD was " depression or early dementia " . My LLMD wants me to go back and

have another SPECT and have it read by a LLMD.

Rita B in CT

[Guest guest]

> My brain SPECT showed " moderately severe global hypofusion " and the dx by a

> nonLLMD was " depression or early dementia " . My LLMD wants me to go back and

> have another SPECT and have it read by a LLMD.

>

> Rita B in CT

Dear Rita: I also had the same showing on my SPECT scan. LOL - I LOVE

the EARLY DEMENTIA!!! It's what I've been hoping for all along. As

long as it's a happy, totally out of it, interplanetary dementia in my

lyme leper colony on Molokai, I'm all for it!

Love,

Lovette

[Guest guest]

The big surprise was evidence of brain injury

from trauma, and evidence of toxic exposure (I am guessing nutrasweet &

mercury), in addition to a lack of blood flow to the brain. That

explains why Piracetam, a smart drug that increases oxy in the brain,

helps me so much..... do a round of EDTA to increase blood flow to the brain,

Could you say more about Piracetam and EDTA, please? Are these prescribed drugs?

Thanks

Lucy UK

[Guest guest]

Ped. Dr. Goldberg (autism & etc.) doctor in s. CA uses these tests in

his tx. There is info and discussion re them at his site

www.neuroimmunedr.com and/or the site that's linked from that site.

There's a NIDs list, i bet a lot of folks on that have had spect scans

(or their kids.)

FYI,

Kathy IN

SPECT Scans

> Hello,

>

> Have any of the parents on this list (or adults w/ autism/ADD/etc) ever

> had a SPECT scan, as described in " Change your brain, change your life "

> by Dr. Amen? The test measures metabolic activity, not phyisical

> structure or EEG. The test is very definitive. It costs $1200 for each

> test in Silicon Valley.

>

> I just had two of them, one resting, one while concentrating, to confirm

> ADD or Aspergers. I haven't seen the pictures but I read the analysis

> of them. In short, I was " an interesting referral. " Anyone who knows

> medicine knows that isn't good!

>

> They identified 8 distinct problems in my brain, including

> attention-related stuff. The big surprise was evidence of brain injury

> from trauma, and evidence of toxic exposure (I am guessing nutrasweet &

> mercury), in addition to a lack of blood flow to the brain. That

> explains why Piracetam, a smart drug that increases oxy in the brain,

> helps me so much.

>

> Rather than go on the way too strong stuff they are recommending, I am

> going to finish chelation w/ DMSA, do a round of EDTA to increase blood

> flow to the brain, and do more EEG biofeedback and see what it does.

>

> I would highly encourage those who can do this test to get it done. It

> provides a very visual, understandable picture and diagnosis to show to

> doubting teachers, authorities, etc. It shows there is a problem in the

> wiring, and that it is not just insecurity or stress, it is a physical

> thing.

>

> Very interested in hearing from anyone, on or offlist, who has done this

> test.

>

> Thanks,

> Dave

>

> Dave Asprey

> dave@...

> www.asprey.net

>

>

>

>

>

[Guest guest]

Hi Lucy,

Piracetam is a very well known " smart drug " that has been shown in

double blind studies to increase IQ. It increases communication across

the corpus collosum and raises oxygen levels in the brain. It is

neuroprotective; it protects brain cells from death when they are

deprived of oxygen for relatively long periods of time (like up to 45

mins). Almost no reactions with other drugs, very low toxicity. People

use it when they climb Everest for its oxygenating effect. Also some

places in Europe use it before surgery incase of problems w/ anesthesia.

See www.antiaging-systems.com for a great description and a source (they

are a UK company but only ship offshore).

EDTA is an IV chelator, primarily used for lead poisoning in children,

and in adults who have calcium plaque (hard arteries), as an alternative

to having their rib cage ripped open and a bypass surgery performed

(which hurts a lot and does not help you live longer). EDTA is actively

being repressed by the FDA in the US, as it is much cheaper than bypass,

but there is little doubt it works. I may have a problem with calcium

levels in my circulation system, which is why we are going to give it a

try.

Thanks,

Dave

Dave Asprey

dave@...

www.asprey.net

>>Could you say more about Piracetam and EDTA, please? Are these

prescribed drugs?

Thanks

Lucy UK