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Medical Forum / Diseases and Disorders / Lupus / December 2003

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My doctor went to a convention

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Nicole H - 24 Dec 2003 07:26 GMT
or whatever.  Said something was mentioned about lupus actually being lyme
disease (I know this has been a theory out there for a while).  He said they
were saying that lupus is actually lyme disease in a very late stage.  The
recommendation was Samento extract.

BTW, this doctor is a family physician (I hate rheumies and the meds they
want me to take).  So far, I just take Plaquenil for the lupus itself... and
the occasional Depo Medrol dose pack.  I refuse long term steroids or the
use of mtx, etc (don't get me wrong, if my kidneys, heart, cns, etc was at
stake, I'd take 'em in a heart beat).  Hopefully, I have many yrs ahead of
me and feel the use of these meds outweigh the positive effects for me.
Anyways.....

Has anyone heard this?  He said he thought there were a couple of studies on
it but I haven't looked for them.

I've tried so many non traditional things... just hoping something would
help.
Thx
Nicole

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J - 24 Dec 2003 10:59 GMT
> or whatever.  Said something was mentioned about lupus actually being lyme
> disease (I know this has been a theory out there for a while).  He said they
[quoted text clipped - 11 lines]
> Has anyone heard this?  He said he thought there were a couple of studies on
> it but I haven't looked for them.

Hi Nicole,
Here's my non-expert understanding of Lyme.
Well the signs and symptoms might be similar (joint pain and rashes etc)
Shelagh's going to "kill me", but I think Lyme is in the "differentials"(ie "is
it something else?" or both) for Lupus.

My understanding of Lyme is one can get a round (bulls-eye) rash from the tick
bite (but sometimes not) and  thenslowly, over a period of years develop signs
and symptoms and not know why. There is no clear blood test, because if a person
has been bitten by a tick, whatever they look for could show in the bloodwork,
without actually being symptomatic..
Lyme's treated in the acute phase with antibiotics.
In the chronic phase, with longterm antibiotics. (my brother tried this and he
was getting worse). FWIW

Samento extract appears to be somehow connected to Cat's Claw? (you'd have to
ask an expert about that)..

If so http://www.aids.org/FactSheets/722-cats-claw.html
http://www.rxlist.com/cgi/alt/catsclaw_faq.htm
FWIW
J
Nicole H - 24 Dec 2003 15:13 GMT
I live in Central CA... no deer ticks here.  Nor do I ever remember being
bitten by a tick.  I have spent summers in OK and OR.

Yes Samento is a form of cat's claw but w/o some ingredient.
I really believe my dr is just grasping at straw's in an attemp to help.
This Samento stuff is supposed to stimulate the immune system which has me
leary of trying it.

Thx for your reply
Nicole
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>
> > or whatever.  Said something was mentioned about lupus actually being lyme
[quoted text clipped - 35 lines]
> FWIW
> J
kcat - 24 Dec 2003 18:47 GMT
Is there lyme disease in the near and middle east?  In Africa?  Where
I believe lupus is more prevalent (though not necessarily diagnosed as
such.)

Hard for me to believe that Lyme disease and lupus are one and the
same given the localized nature of the ticks that carry it.  I suppose
if it can be show that it can be transferred by a ubiquitous critter
than i'd be more open to it.  But I have never been in deer tick
territory.

no... sorry - I don't see this at all.

What I *can* see is that getting Lyme disease (as with any other
illness or injury) could *trigger" the onset of lupus.

none of this says that the treatment for Lyme disease might not be
helpful.  That's a totally different issue.  

my .02

>Has anyone heard this?  He said he thought there were a couple of studies on
>it but I haven't looked for them.
[quoted text clipped - 3 lines]
>Thx
>Nicole
J - 24 Dec 2003 19:35 GMT
>   But I have never been in deer tick territory.

Where's deer tick territory?
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=2
758820&dopt=Abstract
>

National surveillance of Lyme disease, 1987-1988.
Regionally, incidence rates were highest in Northeastern and Mid-Atlantic states,
intermediate in North Central and Pacific states, lower in the Southeast, and
lowest in the Great Plains and Mountains states. The seven remaining states in
which Lyme disease has not been transmitted all lie west of the 100th meridian.[]

but deer and ticks move around...unless they're shot on sight on TX.
I know OK had ticks, don't know if they had deer (or not). Z lived Southern OK.
(and people travel, over their lifetime).

The way I see it if a person is on longterm antibiotic and doesn't start to feel
some symptom relief (or gets worse), then it's not Lyme, but I'm not an expert.

Merry Christmas KC !
J
Andy - 29 Dec 2003 20:09 GMT
In article <3FE9EA77.5E5DC059@execulink.com>, J <BackHowe1@inv.invalid>
wrote
[
>but deer and ticks move around...unless they're shot on sight on TX.

It's the customary greeting to strangers in these parts..
Signature

Andy [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Nicole H - 25 Dec 2003 09:25 GMT
I'm in CA.
I developed SLE when I was pregnant for the first time.  After giving birth,
I went on the Depo Provera shot.
I'm wondering how all those hormones factor in.

I flare according to my cycle.  I'm going to request to skip my monthly
cycle (going to use Nuva Ring) and see if that helps.  It's very low in
hormones and my dr things it's not a problem.  It has less hormones than the
pill and much easier to maintain.

I guess I have nothing to lose by trying the Samento.  BTW, I don't ever
remember being bitten by a tick.  We don't have lyme disease ticks here...
but I have spent time in Oregon, Oklahoma and I think Missouri.

Thx
Nicole

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> Is there lyme disease in the near and middle east?  In Africa?  Where
> I believe lupus is more prevalent (though not necessarily diagnosed as
[quoted text clipped - 23 lines]
> >Thx
> >Nicole
J - 25 Dec 2003 10:12 GMT
> I'm in CA.
> I developed SLE when I was pregnant for the first time.  After giving birth,
[quoted text clipped - 3 lines]
> I flare according to my cycle.  I'm going to request to skip my monthly
> cycle (going to use Nuva Ring) and see if that helps.

I do believe there's a connection. I think the "lupus in men" mentions it, so
why not for women too.
In fact, I think KC mentioned noticing something similar.

I've also heard non-SLE women post-menopause mentioning worsening of symptoms
according to cycles..
Something to keep in mind, but how would they know..unless they keep a record
and watch for monthly patterns.

Let us know how it goes, might be important for others here.
Hugs
J
kcat - 25 Dec 2003 16:05 GMT
>> I flare according to my cycle.  I'm going to request to skip my monthly
>> cycle (going to use Nuva Ring) and see if that helps.
>
>I do believe there's a connection. I think the "lupus in men" mentions it, so
>why not for women too.
>In fact, I think KC mentioned noticing something similar.

Indeed - every 28 days begins a "mini flare" that lasts 4-6 days.
Starting the evening after the first "non-hormone" dose or the next
day.  Starts with a migraine and joint pain that my regular meds can't
touch.

>Something to keep in mind, but how would they know..unless they keep a record
>and watch for monthly patterns.

it could be done - my gp and I have talked about setting me up with an
endocrinologist to try to figure out my pattern though of course that
would only be one data point.  but it's known.  I just wish my rheumy
and my ob would get together and discuss this.  I know that it's worth
*trying* the three-month pill (I don't know aobut the Nuva Ring and
it's ilk). I'd rather try and fail than not try at all and potentially
miss an opportunity to feel better a higher percentage of the time.

BTB - my sister went into a horrible flare when she tried the depo
shots.  They triggered extremely dangerous asthma attacks, migraines,
etc.  YMMV of course but for me, that doesn't sound like the right
approach.  
Nicole H - 26 Dec 2003 06:22 GMT
I'm going to try the Nuva ring since it has fewer hormones than the pill.
The pill has to go thru first pass and the Nuva ring doesn't.
So you flare around your cycle too?  I always have.  My rheumy was the only
one who didn't believe me.  My other drs (family physicians) accept that and
believe it.  It's nice to be believed.  LOL
Depo Provera was just horrible!!!  I share my horror story w/everyone that
mentions it.

I am concerned about totally skipping my period that it will affect the
calcium absorption.  I do take daily calcium, drink milk, fortified oj, etc
But I have read that skipping your cycle is bad.  I'll talk to my ob/gyn
about it more.

Thx
Nicole
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>
> >> I flare according to my cycle.  I'm going to request to skip my monthly
[quoted text clipped - 24 lines]
> etc.  YMMV of course but for me, that doesn't sound like the right
> approach.
kcat - 26 Dec 2003 20:15 GMT
>Depo Provera was just horrible!!!  I share my horror story w/everyone that
>mentions it.
[quoted text clipped - 3 lines]
>But I have read that skipping your cycle is bad.  I'll talk to my ob/gyn
>about it more.

however - doctors have been using a "3 month" cycle for many years
with no indications that it truly is unsafe in anyway.  Of course,
since such use is not considered a "correct" use of the drugs, there
isn't much in the way of data.  US docs wouldn't report their findings
on this because they aren't supposed to do it.  But they do -
prescribing the pill such that the patient misses two out of three
cycles.  In some contries, the 3-month pill has been approved for
several years.  data may be easier to come by in European medical
journals.

There are some women who naturally have very erratic and loong cycles
(two months or more.)

IMO - it's a matter of priorities - I would rather risk long-term
*potential* problems (but of course do other things to try to prevent
them such as supplemental calcium or whatever) than put up with the
horrific pain that often accompanies my cycle along with the
near-suicidal emotional turmoil that goes with it.  Basically it's a
quality of life issue for me.  

As hubby would say - would you rather have a horrible ending or
horrors without end.  I vote the former.

kcat
Nicole H - 26 Dec 2003 23:05 GMT
That's what I have a hard time with.... quality versus quantity of life.
I'm 28, dx'd 8 yrs ago.  So I would prefer not to cause problems now that
will have horrible effects later.
I'm going to make an appt w/my ob/gyn and get his opinion.  The every third
month thing could work.
The week before my cycle starts, I sleep all the time, horrible joint pain
(even w/pain meds) etc.  This could really help me a lot!  I hope it does.
The nuva ring looks like a no brainer so that's even better.

Thx for your input
Nicole

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>
> >Depo Provera was just horrible!!!  I share my horror story w/everyone that
[quoted text clipped - 29 lines]
>
> kcat
Cindy - 27 Dec 2003 00:03 GMT
And we do have lots of ticks in Oklahoma. But like J said, I think that a
blood test would show positively that you have lyme.
Cindy
> I'm in CA.
> I developed SLE when I was pregnant for the first time.  After giving birth,
[quoted text clipped - 41 lines]
> > >Thx
> > >Nicole
Nicole H - 27 Dec 2003 03:51 GMT
My doctor was saying that the blood test isn't very reliable for Lyme
Disease.  Said just because your IGG isn't elevated, doesn't mean you don't
have Lyme.
I just don't know
Nicole
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Someone you know has lupus.  Help find the cure.  www.lupus.org

> And we do have lots of ticks in Oklahoma. But like J said, I think that a
> blood test would show positively that you have lyme.
[quoted text clipped - 48 lines]
> > > >Thx
> > > >Nicole
J - 27 Dec 2003 07:15 GMT
> My doctor was saying that the blood test isn't very reliable for Lyme
> Disease.

Yes, that's basically what I said (with maybe some exceptions, but I'm too lazy
to look it up)

> Said just because your IGG isn't elevated, doesn't mean you don't
> have Lyme.

I'll take your (doctor's) word on that..
J - with lookitupitis
 
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