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Should I bother doing anything now?
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kathleen
medicine forum Guru


Joined: 24 Mar 2005
Posts: 2619

PostPosted: Sat Jul 15, 2006 10:02 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Number One: You're one of hundreds of thousands in the same boat,
so try not to feel so isolated.
Number Two: Get off and stay off the psych meds- they make it worse,
Number Three: Stay away from psychiatrists, since they are themselves
parasites, feeding off of your hardships.
Number Four: Get some validation of what you are going through;
study my website.
Number Five: Eat plenty of fish and greens
Number Six: Adopt the "I'm kicking ass and taking names" attitude
and join the fight.
Kathleen
http://www.actionlyme.org/
Bob wrote:
Quote:
Hi All,

I was diagnosed with Chronic Lyme Infection in 1997. I was likely infected
at age 10 (in 1971). I had all the classic symptoms: one month of flu-like
symptoms, followed by Bell's Palsy (the left side of my face became
paralyzed), then encephalitis (for which I was hospitalized for about 10
days), and finally, about a year or more after infection, I suffered from
Juvenille Rheumatoid Arthritis, which lasted for 3 years, and then cleared
up. The latter two "ailments," were likely Lyme Encephalitis and Lyme
Arthritis (misdiagnosed as more common ailments).

In 1997, I found a farily good "Lyme doc" in Northern California. He ran a
Western Blot, and I was positive for Lyme. He prescribed oral antibiotics,
Biaxin 2 grams daily, and after a year, he put me on IV Permapen (I believe
1200 iu's 2x weekly). During this time, I experienced what could be called a
Herxheimer reaction. I was litteraly bed-ridden during the first year of
treatment. Because of my inactivity, I gained about 100 lbs! Later, I found
out that the toxins caused by the Lyme bacterium accumulate in fat cells. So
now I was worse off than ever, and I soon discontinued treatment.

Of course, it's now the year 2006 (about 35 years since initial infection).
I'm being treated for depression (but it's treatment resistant). I'm still
overweight, and don't know what to do now. It seems "mainstream medicine"
does not acknowledge chronic Lyme Infection. I predict I'll be living in a
rest home by the age of 50 (I'm currently 44 years old). I can barely take
care of myself now, yet I have two kids to care for on the weekends (we
don't get much "quality time" unfortunately). I'm miserable, and I think
about suicide about 3x per week. But I've been worse. I actually resorted to
ECT (electroconvulsive therapy) to treat my depression about 1-1/2 years
ago. It worked temporarily, but as soon as I regained most of my memories,
the depression returned.

I'm wondering now, what Lyme might play in the part of my TRD (treatment
resistant depression) and if there's any point to pursuing Lyme treatment
again? Sorry for the long post! Any comments or advice would be greatly
appreciated.

Sincerely, Bob
Back to top
derdrittemann2003@yahoo.c
medicine forum Guru


Joined: 11 Sep 2005
Posts: 1799

PostPosted: Sat Jul 15, 2006 10:21 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Bob wrote:

Quote:
I'm wondering now, what Lyme might play in the part of my TRD (treatment
resistant depression) and if there's any point to pursuing Lyme treatment
again? Sorry for the long post! Any comments or advice would be greatly
appreciated.

Sincerely, Bob

Do you know about Dr. Fallon in NY? Could you travel to see him?

(I have no idea if he is accepting patients individually, currently).

Are you feeling any continued improvement from antibiotics?

My advice...consult a competent psychiatrist. Do NOT take advice from
someone like Kathleen over the internet.

If you cannot travel to see Fallon, perhaps a local psychiatrist who is
willing to consult on the intricacies of Lyme involvement?
Back to top
Bob
medicine forum beginner


Joined: 05 Mar 2006
Posts: 27

PostPosted: Sat Jul 15, 2006 10:23 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Thanks Kathleen! I didn't expect such a quick response! (I didn't know how
active this newsgroup was <g>). Unfortunately, I'm addicted to two
psychiatriac meds: Klonopin, and Geodon. It will take me some time (maybe a
year or longer) to wean myself off the meds. There was a period of time when
I was off ALL psychiatriac meds (in 1994 and 1995) and I actually felt
better! So I'll take your advice, and "catch up" on whatever is new about
Lyme. Thanks for the link to your website!

Sincerely, Bob


"Kathleen" <kathleen.dickson@snet.net> wrote in message
news:1153000942.903685.183950@m79g2000cwm.googlegroups.com...
Quote:
Number One: You're one of hundreds of thousands in the same boat,
so try not to feel so isolated.
Number Two: Get off and stay off the psych meds- they make it worse,
Number Three: Stay away from psychiatrists, since they are themselves
parasites, feeding off of your hardships.
Number Four: Get some validation of what you are going through;
study my website.
Number Five: Eat plenty of fish and greens
Number Six: Adopt the "I'm kicking ass and taking names" attitude
and join the fight.
Kathleen
http://www.actionlyme.org/
Bob wrote:
Hi All,

I was diagnosed with Chronic Lyme Infection in 1997. I was likely
infected
at age 10 (in 1971). I had all the classic symptoms: one month of
flu-like
symptoms, followed by Bell's Palsy (the left side of my face became
paralyzed), then encephalitis (for which I was hospitalized for about 10
days), and finally, about a year or more after infection, I suffered from
Juvenille Rheumatoid Arthritis, which lasted for 3 years, and then
cleared
up. The latter two "ailments," were likely Lyme Encephalitis and Lyme
Arthritis (misdiagnosed as more common ailments).

In 1997, I found a farily good "Lyme doc" in Northern California. He ran
a
Western Blot, and I was positive for Lyme. He prescribed oral
antibiotics,
Biaxin 2 grams daily, and after a year, he put me on IV Permapen (I
believe
1200 iu's 2x weekly). During this time, I experienced what could be
called a
Herxheimer reaction. I was litteraly bed-ridden during the first year of
treatment. Because of my inactivity, I gained about 100 lbs! Later, I
found
out that the toxins caused by the Lyme bacterium accumulate in fat cells.
So
now I was worse off than ever, and I soon discontinued treatment.

Of course, it's now the year 2006 (about 35 years since initial
infection).
I'm being treated for depression (but it's treatment resistant). I'm
still
overweight, and don't know what to do now. It seems "mainstream medicine"
does not acknowledge chronic Lyme Infection. I predict I'll be living in
a
rest home by the age of 50 (I'm currently 44 years old). I can barely
take
care of myself now, yet I have two kids to care for on the weekends (we
don't get much "quality time" unfortunately). I'm miserable, and I think
about suicide about 3x per week. But I've been worse. I actually resorted
to
ECT (electroconvulsive therapy) to treat my depression about 1-1/2 years
ago. It worked temporarily, but as soon as I regained most of my
memories,
the depression returned.

I'm wondering now, what Lyme might play in the part of my TRD (treatment
resistant depression) and if there's any point to pursuing Lyme treatment
again? Sorry for the long post! Any comments or advice would be greatly
appreciated.

Sincerely, Bob
Back to top
Bob
medicine forum beginner


Joined: 05 Mar 2006
Posts: 27

PostPosted: Sat Jul 15, 2006 10:32 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Hi 3rd Man,

I live in Northern California. So travelling to NY would be impossible. My
current psychiatrist doesn't even consider Lyme Disease a factor in my
psychological ailment(s). I'll have to do some research regarding a
psychiatrist familiar with the intracacies of Lyme involvement.

I haven't been on antibiotics since around 1998.

On another note, seems nothing has changed in the past 10 years. There are
still people (so called experts) butting heads with one another. I HATE the
politics involved with the treatment of this disease. Who are you suppose to
believe???

Frustrated Bob



"the 3rd Man" <derdrittemann2003@yahoo.com> wrote in message
news:1153002095.604418.207600@m73g2000cwd.googlegroups.com...
Quote:

Bob wrote:

I'm wondering now, what Lyme might play in the part of my TRD (treatment
resistant depression) and if there's any point to pursuing Lyme treatment
again? Sorry for the long post! Any comments or advice would be greatly
appreciated.

Sincerely, Bob

Do you know about Dr. Fallon in NY? Could you travel to see him?

(I have no idea if he is accepting patients individually, currently).

Are you feeling any continued improvement from antibiotics?

My advice...consult a competent psychiatrist. Do NOT take advice from
someone like Kathleen over the internet.

If you cannot travel to see Fallon, perhaps a local psychiatrist who is
willing to consult on the intricacies of Lyme involvement?
Back to top
derdrittemann2003@yahoo.c
medicine forum Guru


Joined: 11 Sep 2005
Posts: 1799

PostPosted: Sat Jul 15, 2006 10:37 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Kathleen wrote:


Quote:
Number Six: Adopt the "I'm kicking ass and taking names" attitude
and join the fight.

LMAO.

Excellent advice...except you left out the part where you go
nuts...threaten and harrass innocent people...get charged with criminal
conduct...flee to Canada.

Then enter a GUILTY plea...get tossed into jail and a psychiatric
ward...

....and THEN blame everyone else...Lyme disease...psychiatrists... and
claim the charges that you plead GUILTY to...were "bogus" and
"fraudulent".

Yes, you're really quite the role model and a wonderful person to give
advice.

Lost your job, your husband and your kids, too...and everyday...your
response is to post angry, vengeful attacks on everyone...including the
Bush administration...

....instead of getting your life back on track.

Yeah...you just keep dishing out the advice...

....and the rest of us will have to try to make sure no one listens.
Back to top
kathleen
medicine forum Guru


Joined: 24 Mar 2005
Posts: 2619

PostPosted: Sat Jul 15, 2006 10:37 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Bob wrote:
Quote:
Hi 3rd Man,

I live in Northern California. So travelling to NY would be impossible. My
current psychiatrist doesn't even consider Lyme Disease a factor in my
psychological ailment(s). I'll have to do some research regarding a
psychiatrist familiar with the intracacies of Lyme involvement.

I haven't been on antibiotics since around 1998.

On another note, seems nothing has changed in the past 10 years. There are
still people (so called experts) butting heads with one another. I HATE the
politics involved with the treatment of this disease. Who are you suppose to
believe???

Dont believe Joel, here.
He is not a scientist and has no website and no nuts.

If you are being abused by a psychiatrist, get the
hell away. How can that be helpful?

Kathleen


Quote:
Frustrated Bob



"the 3rd Man" <derdrittemann2003@yahoo.com> wrote in message
news:1153002095.604418.207600@m73g2000cwd.googlegroups.com...

Bob wrote:

I'm wondering now, what Lyme might play in the part of my TRD (treatment
resistant depression) and if there's any point to pursuing Lyme treatment
again? Sorry for the long post! Any comments or advice would be greatly
appreciated.

Sincerely, Bob

Do you know about Dr. Fallon in NY? Could you travel to see him?

(I have no idea if he is accepting patients individually, currently).

Are you feeling any continued improvement from antibiotics?

My advice...consult a competent psychiatrist. Do NOT take advice from
someone like Kathleen over the internet.

If you cannot travel to see Fallon, perhaps a local psychiatrist who is
willing to consult on the intricacies of Lyme involvement?
Back to top
derdrittemann2003@yahoo.c
medicine forum Guru


Joined: 11 Sep 2005
Posts: 1799

PostPosted: Sat Jul 15, 2006 10:48 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Bob wrote:
Quote:
Hi 3rd Man,

I live in Northern California. So travelling to NY would be impossible. My
current psychiatrist doesn't even consider Lyme Disease a factor in my
psychological ailment(s). I'll have to do some research regarding a
psychiatrist familiar with the intracacies of Lyme involvement.

There are articles available on the internet concerning the
neuro/psychiatric manifestations of the disease. Brian Fallon,
Columbia...New York...is the guru of this stuff...the neuropsychiatric
manifestations.

I have never had contact with Fallon myself...but what I am wondering
is if you could find a psychiatrist who might consult with him or
someone similar...or if an LLMD could help facilitate that...a consult.

Sometimes that is the only option for some of us...was with me in the
beginning. Couldn't travel at all...so I worked really hard at setting
up a consult with a well-known Lyme doctor.

I wonder if your psychiatrist is not considering the possibility
because he/she thinks you must be now 'cured'? You know, the
conventional wisdom?
Quote:

I haven't been on antibiotics since around 1998.

Why did you stop, may I ask? Symptoms subside...or...just cut-off?
Quote:

On another note, seems nothing has changed in the past 10 years. There are
still people (so called experts) butting heads with one another. I HATE the
politics involved with the treatment of this disease. Who are you suppose to
believe???

Frustrated Bob

Sorry, Bob...but actually I do sense some progress...maybe too late to
help some of us...but there is a growing awareness. Someday this thing
will hit 'critical mass'...it will get just to big to sweep under the
rug any longer.
Back to top
derdrittemann2003@yahoo.c
medicine forum Guru


Joined: 11 Sep 2005
Posts: 1799

PostPosted: Sat Jul 15, 2006 10:50 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Kathleen wrote:
Quote:

Dont believe Joel, here.
He is not a scientist and has no website and no nuts.

I'm NOT "Joel"...you idiot.

Go fax some crap to the Chinese and Russian embassies.

I'm sure they are wondering if you are allright.
Back to top
derdrittemann2003@yahoo.c
medicine forum Guru


Joined: 11 Sep 2005
Posts: 1799

PostPosted: Sat Jul 15, 2006 10:52 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Bob wrote:
Quote:
Hi 3rd Man,

I live in Northern California. So travelling to NY would be impossible. My
current psychiatrist doesn't even consider Lyme Disease a factor in my
psychological ailment(s). I'll have to do some research regarding a
psychiatrist familiar with the intracacies of Lyme involvement.

Bob...here...have a look:

http://www.columbia-lyme.org/flatp/staff.html
>
Back to top
Bob
medicine forum beginner


Joined: 05 Mar 2006
Posts: 27

PostPosted: Sat Jul 15, 2006 10:59 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Hi 3rd Man,

Yes, I've read articles published by Brian Fallon (I think I have a copy of
his article, "Neuropsychiatric Manifestations of Lyme Disease," in my
archives). I'll print a copy and take it to my psychiatrist, and see what
happens.

I stopped the antibiotics because they seemed to be doing more harm than
good. Ironically, emotionally I improved (while on antibiotics) but
physically, I went WAY down-hill. I had bouts of yeast infections, etc. too.
What I wanted most was an abx capable of entering the central nervous
system; like a cephalosporin (i.e.: Rocephin). But my "Lyme doc" was afraid
to use it on me, because I had an allergic reaction to I.V. Keflin, during
an appendectomy (done when I was around 14 years old--after being infected
by Lyme). Keflin, apparently, is a close relative to Rocephin. Anyway, I
just broke out in hives, during the operation. (Could that have been a
herxheimer reaction, rather than an allergic response?)

I'm glad to hear you sense some progress with regard to the politics
surrounding Lyme Disease, and it's treatment. That gives me some hope!

Sincerely, Bob

"the 3rd Man" <derdrittemann2003@yahoo.com> wrote in message
news:1153003708.707512.85750@p79g2000cwp.googlegroups.com...
Quote:

Bob wrote:
Hi 3rd Man,

I live in Northern California. So travelling to NY would be impossible.
My
current psychiatrist doesn't even consider Lyme Disease a factor in my
psychological ailment(s). I'll have to do some research regarding a
psychiatrist familiar with the intracacies of Lyme involvement.

There are articles available on the internet concerning the
neuro/psychiatric manifestations of the disease. Brian Fallon,
Columbia...New York...is the guru of this stuff...the neuropsychiatric
manifestations.

I have never had contact with Fallon myself...but what I am wondering
is if you could find a psychiatrist who might consult with him or
someone similar...or if an LLMD could help facilitate that...a consult.

Sometimes that is the only option for some of us...was with me in the
beginning. Couldn't travel at all...so I worked really hard at setting
up a consult with a well-known Lyme doctor.

I wonder if your psychiatrist is not considering the possibility
because he/she thinks you must be now 'cured'? You know, the
conventional wisdom?

I haven't been on antibiotics since around 1998.

Why did you stop, may I ask? Symptoms subside...or...just cut-off?

On another note, seems nothing has changed in the past 10 years. There
are
still people (so called experts) butting heads with one another. I HATE
the
politics involved with the treatment of this disease. Who are you suppose
to
believe???

Frustrated Bob

Sorry, Bob...but actually I do sense some progress...maybe too late to
help some of us...but there is a growing awareness. Someday this thing
will hit 'critical mass'...it will get just to big to sweep under the
rug any longer.
Back to top
derdrittemann2003@yahoo.c
medicine forum Guru


Joined: 11 Sep 2005
Posts: 1799

PostPosted: Sat Jul 15, 2006 11:18 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Bob wrote:
Quote:

I stopped the antibiotics because they seemed to be doing more harm than
good.

I was on orals for several years.

Yeah, at some point, you sense they really aren't acomplishing
anything. I quit taking them as soon as I realized they were having no
effect.

But I do also have lingering symptoms...so that leaves us both with the
classic question...what is the cause? Damage? Autoimmune? Hyper-immune?

Dunno. No one does.

Ironically, emotionally I improved (while on antibiotics) but
Quote:
physically, I went WAY down-hill. I had bouts of yeast infections, etc. too.

Yeah. Just the lack of physical activity can really have neagtive
consequences.


Quote:
What I wanted most was an abx capable of entering the central nervous
system; like a cephalosporin (i.e.: Rocephin).

There are some orals out now...cephalosporins...Vantin, I think? My
biggest improvement came on Flagyl/Zithro.


But my "Lyme doc" was afraid
Quote:
to use it on me, because I had an allergic reaction to I.V. Keflin, during
an appendectomy (done when I was around 14 years old--after being infected
by Lyme). Keflin, apparently, is a close relative to Rocephin. Anyway, I
just broke out in hives, during the operation. (Could that have been a
herxheimer reaction, rather than an allergic response?)

I'm glad to hear you sense some progress with regard to the politics
surrounding Lyme Disease, and it's treatment. That gives me some hope!

Well, reason I am suggesting the possibility of a consult is sounds
like you have a complicated history and symptoms.

Me, I want to confer with experienced professionals...so that you can
come up with some sort of plan.

I have admittedly had very little experience with psychiatrists...so I
know there are some strong feelings with some concerning this.

Wish I knew better...I do not...but if it was me...I would try to work
with medical and psychiatric pros to get some review of your case
going...with an eye towards coming up with a plan.

Problem with internet medical advice is it's just as good as what you
paid for it...and maybe not even that.


Quote:

Sincerely, Bob

"the 3rd Man" <derdrittemann2003@yahoo.com> wrote in message
news:1153003708.707512.85750@p79g2000cwp.googlegroups.com...

Bob wrote:
Hi 3rd Man,

I live in Northern California. So travelling to NY would be impossible.
My
current psychiatrist doesn't even consider Lyme Disease a factor in my
psychological ailment(s). I'll have to do some research regarding a
psychiatrist familiar with the intracacies of Lyme involvement.

There are articles available on the internet concerning the
neuro/psychiatric manifestations of the disease. Brian Fallon,
Columbia...New York...is the guru of this stuff...the neuropsychiatric
manifestations.

I have never had contact with Fallon myself...but what I am wondering
is if you could find a psychiatrist who might consult with him or
someone similar...or if an LLMD could help facilitate that...a consult.

Sometimes that is the only option for some of us...was with me in the
beginning. Couldn't travel at all...so I worked really hard at setting
up a consult with a well-known Lyme doctor.

I wonder if your psychiatrist is not considering the possibility
because he/she thinks you must be now 'cured'? You know, the
conventional wisdom?

I haven't been on antibiotics since around 1998.

Why did you stop, may I ask? Symptoms subside...or...just cut-off?

On another note, seems nothing has changed in the past 10 years. There
are
still people (so called experts) butting heads with one another. I HATE
the
politics involved with the treatment of this disease. Who are you suppose
to
believe???

Frustrated Bob

Sorry, Bob...but actually I do sense some progress...maybe too late to
help some of us...but there is a growing awareness. Someday this thing
will hit 'critical mass'...it will get just to big to sweep under the
rug any longer.
Back to top
Bob
medicine forum beginner


Joined: 05 Mar 2006
Posts: 27

PostPosted: Sat Jul 15, 2006 11:27 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Good points 3rd Man!

I found the article on the "Neuropsychiatric Manefestations of Lyme
Disease," by Brian Fallon. I'm printing a copy of it now, and I'll take it
to my psychiatrist Monday. We'll see what happens from there. Based upon
what I've read over the years, I don't believe Lyme is curable after it has
"established" itself in the CNS and everyplace else in the human body. But I
keep hoping...

Sincerely, Bob
Back to top
derdrittemann2003@yahoo.c
medicine forum Guru


Joined: 11 Sep 2005
Posts: 1799

PostPosted: Sat Jul 15, 2006 11:35 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Bob wrote:
Quote:
Good points 3rd Man!

I found the article on the "Neuropsychiatric Manefestations of Lyme
Disease," by Brian Fallon. I'm printing a copy of it now, and I'll take it
to my psychiatrist Monday. We'll see what happens from there. Based upon
what I've read over the years, I don't believe Lyme is curable after it has
"established" itself in the CNS and everyplace else in the human body. But I
keep hoping...

Sincerely, Bob

Very best of luck to you, too, Bob...and you might want to try your
questions at Lymenet.org, if you haven't already...

....this place is more than a little crazy lately...
Back to top
Bob
medicine forum beginner


Joined: 05 Mar 2006
Posts: 27

PostPosted: Sat Jul 15, 2006 11:54 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Thanks 3rd Man,

I haven't visited Lymenet.org in years... I'll have to take a look.

Sincerely, Bob


"the 3rd Man" <derdrittemann2003@yahoo.com> wrote in message
news:1153006517.211456.231950@m73g2000cwd.googlegroups.com...
Quote:

Bob wrote:
Good points 3rd Man!

I found the article on the "Neuropsychiatric Manefestations of Lyme
Disease," by Brian Fallon. I'm printing a copy of it now, and I'll take
it
to my psychiatrist Monday. We'll see what happens from there. Based upon
what I've read over the years, I don't believe Lyme is curable after it
has
"established" itself in the CNS and everyplace else in the human body.
But I
keep hoping...

Sincerely, Bob

Very best of luck to you, too, Bob...and you might want to try your
questions at Lymenet.org, if you haven't already...

...this place is more than a little crazy lately...
Back to top
Kara
medicine forum beginner


Joined: 15 May 2005
Posts: 36

PostPosted: Sun Jul 16, 2006 1:34 pm    Post subject: Re: Should I bother doing anything now? Reply with quote

Where in NCalifornia, Bob? My brother is in Aptos.
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