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Medical Forum / Diseases and Disorders / Lupus / May 2005

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Another "Could it be lupus" question.

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William R. Thompson - 03 May 2005 09:19 GMT
Hello, everyone.

A lot of the problems I've had sound like lupus symptoms:
heavy fatigue, joint and muscle pain (lasts for days or weeks),
mouth sores (usually small and painless), rashes (not the malar
rash; usually it's skin flaking off my face and arms), and my
hands will go cold and numb.  In addition there are nose bleeds
and some creative bleeding (spots on my skin, one or two
millimeters across, will open up), plus stomach cramps and
diarrhea.  All of this happens after I've been in the sun,
spent too much time under flourescent lighting or in front of
a CRT, or had any alcohol.

I know all of this sounds like lupus, but one problem I have
that doesn't match the list of symptoms is this: my temperature
will drop one or more degrees (sometimes down to 95 F/35 C).
When I go to see the doctor this month should I ask him about
lupus, or should he look at something else?

I had an ANA test about ten years ago.  I don't know what the
numbers were; the doctor would only tell me "the numbers were
too low for lupus."  I went through a porphyria misdiagnosis
after that, and I've seen two therapists who both decided it
isn't psychosomatic.

Any advice or suggestions will be greatly appreciated.

--Bill Thompson
herbwormwood - 03 May 2005 11:09 GMT
> Hello, everyone.
>
[quoted text clipped - 24 lines]
>
> --Bill Thompson

You may want to look into Antiphospholipid Syndrome, there is a lot on the
net about it.
I am not sure whether it relates to sun sensitivity or not but the
circulatory issues could be related. How are you if you stay away from UV
light and abstain from alcohol?
There is a yahoo group for Antiphospholipid Syndrome which is very freindly
and lots of people in it do not have diagnoses.
I also often have a low temperature 35 to 36 but I do not monitor my
temperature often enough, I think 36 is  normal for me. Any chance your
temperature drop is related to your core temperature just falling naturally,
when you are inactive and in a cold place? I think that happens with me. My
extremiities go purple blue and white!
The extreme sun sensitivity looks like a good clue. Can you focus on that in
your quest?
Let us know what you learn!
William R. Thompson - 04 May 2005 09:27 GMT
(snip)

> You may want to look into Antiphospholipid Syndrome, there is a lot on the
> net about it.

Thanks; I've looked at some sites.  I'm not sure if it would apply
to me.  I've never had a stroke or other sign of thrombosis, as
far as I know.  I don't think I qualify for "sticky blood,"
either.  During a dental appointment a few months ago, the
dentist said "Are you on a blood-thinning agent?  You're
doing a lot of bleeding here."

> I am not sure whether it relates to sun sensitivity or not but the
> circulatory issues could be related. How are you if you stay away from UV
> light and abstain from alcohol?

I'm generally fine when I stay away from both.  I've never
been much for drinking, mainly because it always gave me cramps
and the runs a few hours later.  The dentist advised me to start
using mouthwash every time I brushed my teeth, because my gums keep
getting inflamed, but I had to give that up.  Listerine is about
54 proof, and after a few days of that I felt fairly run down.

I've had odd reactions to various over-the-counter medications,
but that happens to other people in my family.  

> I also often have a low temperature 35 to 36 but I do not monitor my
> temperature often enough, I think 36 is  normal for me. Any chance your
> temperature drop is related to your core temperature just falling naturally,
> when you are inactive and in a cold place?

That was one of the first things I thought of.  My temperature
normally runs 98.0 to 98.8 F (36.7 to 37.1 C).  When it drops
low enough I feel like someone has turned up the air conditioning
too high.

> The extreme sun sensitivity looks like a good clue. Can you focus on that in
> your quest?

I have.  The trail always comes back to lupus.

> Let us know what you learn!

I will, thanks!

--Bill Thompson
BJ - 04 May 2005 14:37 GMT
Hi Bill,
Have you ever had your platelet level checked? The bleeding you experience
with your gums suggests a possible problem there. Lupus affects my blood
mostly, and has caused my platelets to drop as low as 6. ( medical
emergency) Do you have a lot of bruising, by any chance? Also there are very
mild mouth washes you can get. Listerine is strong enough to take the skin
off a horse. I also wanted to mention body temperature. I am troubled with
low temps too. I was in Toronto during the SARS episode a couple of years
ago. I went to visit someone in a nursing home there. Nurses were taking the
temp of anyone coming into the home. Mine was 35C. The nurse questioned
whether or not the thermometre was working properly, and took my temp again.
I often have a drop in body temp, accompanied by chills, when I am getting
sick. That changes to fever later, but is an early sign.
BJ-Sk. Canada

> (snip)
>
[quoted text clipped - 42 lines]
>
> --Bill Thompson
William R. Thompson - 05 May 2005 09:01 GMT
> Hi Bill,
> Have you ever had your platelet level checked?

No, but I'll put that on my list of things to ask the doctor.

> Do you have a lot of bruising, by any chance?

No, but I don't do much to bruise myself, either.
When I get these bleeding spots they don't bleed
much, but some of them take a long time to heal.

> Also there are very mild mouth washes you can get.

Thanks!  I didn't know that; I thought they were all
ethanol-heavy.  I'll look for them.

> Listerine is strong enough to take the skin off a horse.

True.  At least the blue, Windex-flavored Listerine isn't
as distasteful as the original brown variety.

> I also wanted to mention body temperature. I am troubled with
> low temps too. I was in Toronto during the SARS episode a couple of years
[quoted text clipped - 3 lines]
> I often have a drop in body temp, accompanied by chills, when I am getting
> sick. That changes to fever later, but is an early sign.

I don't usually get fevers.  My temperature will start
to drop about six hours after I've had too much light.  
After a day or two it's back to normal, even when the
other things drag on.  I've tried various things to warm
up when it's down (hot showers, thermal underwear,
exercising) without any result.

--Bill Thompson
Beverley - 06 May 2005 13:45 GMT
There are several mouthwashes that contain NO alcohol. Ask if you don't see
it. How about a good sloshing with salty water?
Bev

> > Hi Bill,
> > Have you ever had your platelet level checked?
[quoted text clipped - 33 lines]
>
> --Bill Thompson
William R. Thompson - 07 May 2005 08:10 GMT

> There are several mouthwashes that contain NO alcohol. Ask if you don't see
> it. How about a good sloshing with salty water?

I'll try both of those, thanks.

--Bill Thompson
herbwormwood - 05 May 2005 10:35 GMT
Bill, you don't have to have had a stroke or other obvious sign of thrombosis
to have Antiphospholipid Syndrome. I have it fairly bad and I have neither
stroke or thrombosis..
It was what you described as "creative bleeding" and your hands going cold
and numb, which alerted me to the possibility. You say you have looked into
it but there are blood tests which can show up the chance that you have it,
so if I was you I would ask for them at your next review.
To be honest you say you are generally fine if you stay away from alcohol and
sun, so I would say it is probably something more specific to that rather
than lupus or  Antiphospholipid Syndrome.
You say you have been checked for porphyria, was the check conclusive?
How old are you? Have you always had this or has it just developed, and did
you do anything different before it developed (new medication, holiday in the
sun, for example?)

On Wed, 4 May 2005 09:27:49 +0100, William R. Thompson wrote
(in article <42788745.8BD80C08@ix.netcom.com>):

> (snip)
>
[quoted text clipped - 42 lines]
>
> --Bill Thompson
William R. Thompson - 05 May 2005 14:06 GMT

> Bill, you don't have to have had a stroke or other obvious sign of thrombosis
> to have Antiphospholipid Syndrome. I have it fairly bad and I have neither
> stroke or thrombosis..

Oh.  I guess I misunderstood what I was readsing
on the sites Google turned up.

>  It was what you described as "creative bleeding" and your hands going cold
> and numb, which alerted me to the possibility. You say you have looked into
> it but there are blood tests which can show up the chance that you have it,
> so if I was you I would ask for them at your next review.

> To be honest you say you are generally fine if you stay away from alcohol and
> sun, so I would say it is probably something more specific to that rather
> than lupus or  Antiphospholipid Syndrome.
> You say you have been checked for porphyria, was the check conclusive?

Yes.  I had tests by two doctors, and both times the
results came back negative.  (The first doctor told me
that "negative results don't prove anything."  Considering
how fast she was to tell me I had one of the porphyrias,
I have to wonder if she was eager to find a case.)

> How old are you?

I turned fifty in March.

> Have you always had this or has it just developed, and did
> you do anything different before it developed (new medication, holiday in the
> sun, for example?)

I'm not sure how long this has been going on.  Thirty
years ago the fatigue, pains and digestive problems were
just annoying, and didn't last more than a day or so.  
It built up slowly.  I'd always been underweight (six
feet/182 cm. and about 135 lbs./61 kg), but I'd thought
that was normal, even when my weight started swinging
(between 140 and 125 pounds).

In 1996 I was diagnosed with skin cancer.  It was easily
fixed, but the way the doctor said "Stay out of the sun"
made that sound like a very good idea (I have fair skin,
the basic Irish blue, aside from some florid mottling on
my face and neck).  

After a month out of the sun I started to feel a lot
better--no fatigue, no skin flaking, the digestive problems
eased off, my hay fever vanished after twenty-five years
and my weight went up to 160 pounds and stayed there (I
know, everyone is supposed to complain about putting on
weight, but it was nice to not see my ribs any more).  
Another two months and I realized I only had problems after
I went out in the sun.  I mentioned this to the
dermatologist; he suggested lupus, ran an ANA test, and
told me the results were negative.

No one in my family has ever had lupus.  One of my brothers
has had juvenile diabetes (type 1) since he was ten.  One
grandfather developed rheumatoid arthritis in his early
fifties.  One of my cousins was also pale and skinny, and
plagued with digestive problems like mine, but Sherry never
had a proper diagnosis before she died of cancer in her
late thirties.

--Bill Thompson
J - 27 May 2005 12:24 GMT
> No one in my family has ever had lupus.  One of my brothers
> has had juvenile diabetes (type 1) since he was ten.  One
[quoted text clipped - 3 lines]
> had a proper diagnosis before she died of cancer in her
> late thirties.

Bill, can you find out what exactly she died of?
Might be helpful.
I'm concerned about you.
J
William R. Thompson - 28 May 2005 07:44 GMT


> > No one in my family has ever had lupus.  One of my brothers
> > has had juvenile diabetes (type 1) since he was ten.  One
[quoted text clipped - 3 lines]
> > had a proper diagnosis before she died of cancer in her
> > late thirties.

> Bill, can you find out what exactly she died of?
> Might be helpful.

Sherry died of breast cancer about fifteen years ago.
When she was a baby the family physician diagnosed her
with celiac disease.  There weren't any lab tests for it
at the time.  This diagnosis was based on the doctor's
experience (he had seen it while working in the tropics
during WW II) and Sherry's symptomology (failure to gain
weight, and a foul, loose, pale, explosive diarrhea).
She did better when she was put on a gluten-free diet,
although I know she didn't stick to it when she was older.
(I don't think anyone knows all the details of her
health problems.  Sherry hated to dump her problems on anyone.)

Her brother Gary has had thyroid problems all his life,
and a few years ago he developed adult-onset diabetes.
Her sister Linda died from leukemia about ten years ago.
Cousin Ernie has always been in good health, as far as I know.
This is all on my dad's side of the family.  On mom's
side, one of my cousins developed Hashimoto's disease
about ten years ago, but everyone else is healthy.

> I'm concerned about you.

Thank you.

--Bill Thompson
KCat - 05 May 2005 19:54 GMT
> far as I know.  I don't think I qualify for "sticky blood,"
> either.  During a dental appointment a few months ago, the
> dentist said "Are you on a blood-thinning agent?  You're
> doing a lot of bleeding here."

just want to clarify here - APS does not mean you will clot easily.  In
fact, one of the seemingly contradictory symptoms is bleeding readily and
bruising easily.  This is in part due to the fact that platelet counts are
often low with APS and also because the clotting mechanism itself is fouled
up by the autoimmune condition.  The "sticky" part refers to the blood cells
sticking to each other and to vessel walls vs. circulating properly in the
blood stream.  this is different from the clotting response which is beyond
the scope of this post.
herbwormwood - 06 May 2005 13:19 GMT
>> far as I know.  I don't think I qualify for "sticky blood,"
>> either.  During a dental appointment a few months ago, the
[quoted text clipped - 9 lines]
> blood stream.  this is different from the clotting response which is beyond
> the scope of this post.

APS =Antiphospholipid Syndrome.
William R. Thompson - 07 May 2005 08:13 GMT


> > far as I know.  I don't think I qualify for "sticky blood,"
> > either.  During a dental appointment a few months ago, the
> > dentist said "Are you on a blood-thinning agent?  You're
> > doing a lot of bleeding here."

> just want to clarify here - APS does not mean you will clot easily.  In
> fact, one of the seemingly contradictory symptoms is bleeding readily and
[quoted text clipped - 4 lines]
> blood stream.  this is different from the clotting response which is beyond
> the scope of this post.

Thanks for the info.  I've looked at more antiphospholipid
sites; there's enough to make me think I should ask the
doctor about that possibility.

--Bill Thompson
BJ - 03 May 2005 14:52 GMT
Hi Bill,
I doubt a negative ANA test that is ten years old is enough to rule out
lupus. I think you need to have a full blood workup. There may be other
abnornalities that would lead to a diagnosis. Try to get copies of the
results, so you can review them yourself. You can post them here, if you
wish. Someone might be able to decipher them for you. I have found that a
lot of doctors don't take the time to put the clues together. It is wise to
monitor things yourself.
BJ-Sk. Canada
> Hello, everyone.
>
[quoted text clipped - 24 lines]
>
> --Bill Thompson
Andy - 03 May 2005 16:53 GMT
In article <117f0m67jiuon3d@corp.supernews.com>, BJ <Babs@sk.nojunk.ca>
wrote
>Hi Bill,
>I doubt a negative ANA test that is ten years old is enough to rule out
>lupus.

I've just half-recalled something - isn't it true that having had Lupus
for some years (or was it having had treatment for some years???) can
make your ANA test give a negative result?
Signature

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

William R. Thompson - 05 May 2005 09:06 GMT


> >Hi Bill,
> >I doubt a negative ANA test that is ten years old is enough to rule
> >out lupus.

> I've just half-recalled something - isn't it true that having had
> Lupus for some years (or was it having had treatment for some
> years???) can make your ANA test give a negative result?

There's something I forgot to ask--what other test(s) should
I ask for, after a negative ANA test?  If this isn't lupus,
I'd like to definitely rule it out.

I've never been treated for lupus, but when I had the test,
the problem had already been going on for at least ten years.

--Bill Thompson
J - 06 May 2005 19:31 GMT
> > >Hi Bill,
> > >I doubt a negative ANA test that is ten years old is enough to rule
[quoted text clipped - 10 lines]
> I've never been treated for lupus, but when I had the test,
> the problem had already been going on for at least ten years.

Hi Bill, the other tests are here, under "Diagnosis"
http://www.ghg.net/schwerpt/ASLFAQ/index.htm

If there's a rash, take a photo of it. If you can get to a dermatologist
(before it disappears), perhaps they can biopsy it.

Are you on any medications? If so, what?
And what reactions have you had to over the counters?

Any sign of Raynaud's (or something circulatory) usually shows in hands or
feet
Some older adults with rheumatic, nervous or circulatory conditions, such
as arthritis or hardening of the arteries, suffer from Raynaud's
Phenomenon. Smoking and some medications used to treat heart conditions or
migraines can also cause this condition, which is unrelated to
hypothermia.

When exposed to cold, small blood vessels in the hands and feet contract,
blocking blood flow. The skin turns white, then blue, then red as
circulation returns. The area feels numb or prickly. Doctors recommend
that people with Raynaud's stay warm indoors and out, with socks, multiple
layers of gloves and mittens, and scarves. Wear mittens when taking food
from the refrigerator. Sufferers also must protect against injury to the
skin and stop smoking.<>

I'm having an awful time with temperature drops (always have) and have to
keep core warm. I do have Raynaud's/circulatory problems.

I think that bleeding stuff is called petechaie (sp?). I'm "allergic" to
aspirin containing medications.
There's a list of some causes here
http://www.nlm.nih.gov/medlineplus/ency/article/003235.htm
If most of those have been ruled out, click on autoimmune, another list
shows  up.
Addison's seems to list BP pressure problems, I didn't check everyone to
see which fit.

What is your age? My uncle was diagnosed in his 60's after my brother
recognized the signs and symptoms and told him to get to a doctor fast.

Anything else you may have learned to live with, that might help us figure
it out.

J-looking for more clues
William R. Thompson - 07 May 2005 08:57 GMT
> Hi Bill, the other tests are here, under "Diagnosis"
> http://www.ghg.net/schwerpt/ASLFAQ/index.htm

Thanks!  I'll look.

> Are you on any medications?

No.

> And what reactions have you had to over the counters?

Usually it's cramps and diarrhea.  That includes most pain killers
(aspirin, acetaminophen, ibuprofen), large doses of vitamins (niacin
gave me a seizure in addition to the digestive upset) and No-Doz.
Ginko bilboa gave me the worst headache I've ever had.  I tried
Alka-Seltzer PM once, when a bad cold kept me from getting to sleep;
something in it made me hallucinate. Most decongestants make me sleepy.

Some of my relatives have trouble with medications as well, which
complicates the picture.  My father, both of my brothers and I all
throw up when we take Immodium A-D.

> Any sign of Raynaud's (or something circulatory) usually shows in hands or
> feet
[quoted text clipped - 11 lines]
> from the refrigerator. Sufferers also must protect against injury to the
> skin and stop smoking.<>

Usually when I have to take something cold from the freezer I do
a little finger-dancing, shifting it between fingertips before I
put it down.  I don't smoke, so I'm finally doing something right!
I've learned not to grab anything ice-cold with my bare hands
or in thin gloves.

My hands usually go numb when the fatigue gets heavy enough to
make me pass out; I usually wake up when that happens.  The trouble
is that when I lie down I turn off the lights and take off my
glasses, so when I wake up I can't check for any color changes.
A few times I've seen my hands turn a dark, dull red when they're
going numb.  My feet will get cold, but they seldom go numb.

> I think that bleeding stuff is called petechaie (sp?). I'm "allergic" to
> aspirin containing medications.

Lately I've had trouble after using sunblock with octisalate
and homosalate in them, as well as liniments with aspirin in
them.

> There's a list of some causes here
> http://www.nlm.nih.gov/medlineplus/ency/article/003235.htm
> If most of those have been ruled out, click on autoimmune, another list
> shows up.

Thanks again.

> Addison's seems to list BP pressure problems, I didn't check everyone to
> see which fit.

My blood pressure has always been normal or a bit below normal
when it's tested.  My pulse is normal as well.

> What is your age?

Fifty.

> Anything else you may have learned to live with, that might help us figure
> it out.

Well, there are a couple of weird things.  When I started avoiding
the sun, I stopped chewing my fingernails, a habit I'd never managed
to break.  Plus, the smell of cooking beef always made me feel
like I was being gassed; now that only happens after I've had some
light.  (These were things like pot roasts and stews; I don't know
why steaks or hamburger didn't have the same effect.  I very definitely
do not miss that smell!)

> J-looking for more clues

Same here, and thanks for the clues you've given me!

--Bill Thompson
J - 08 May 2005 17:41 GMT
> > Any sign of Raynaud's (or something circulatory) usually shows in hands or
> > feet
[quoted text clipped - 24 lines]
> > I think that bleeding stuff is called petechaie (sp?). I'm "allergic" to
> > aspirin containing medications.

Sounds to me that you do have Raynaud's

> [..]
> [forget Addison's - my mistake - confused low BP with low temperature]
[quoted text clipped - 8 lines]
> why steaks or hamburger didn't have the same effect.  I very definitely
> do not miss that smell!)

Hi Bill, I'd like to focus on this last paragraph, minus the fingernails.
First I've heard of that. But we'll consider that minor for now.

On this face of it, it seems that things happen after you've been exposed to
light and that may well be or it can be coincidental.

Just for safety's sake, I'm thinking of low-level and sometimes intermittent,
carbon monoxide poisoning.
Has this feeling of being gassed occurred in numerous places or just one place?
Are there gas-powered appliances? stove; water heater; furnace; fireplace;
drier; (etc)?
J
William R. Thompson - 09 May 2005 04:52 GMT


> > Well, there are a couple of weird things.  When I started avoiding
> > the sun, I stopped chewing my fingernails, a habit I'd never managed
[quoted text clipped - 3 lines]
> > why steaks or hamburger didn't have the same effect.  I very definitely
> > do not miss that smell!)

> Hi Bill, I'd like to focus on this last paragraph, minus the fingernails.
> First I've heard of that. But we'll consider that minor for now.

> On this face of it, it seems that things happen after you've been exposed to
> light and that may well be or it can be coincidental.

> Just for safety's sake, I'm thinking of low-level and sometimes intermittent,
> carbon monoxide poisoning.
> Has this feeling of being gassed occurred in numerous places or just one place?
> Are there gas-powered appliances? stove; water heater; furnace; fireplace;
> drier; (etc)?
> J

This smell has only happened when someone's cooking beef.  It's
happened with electric ovens and stoves.  The smell is really
obnoxious, and it doesn't seem to have anything to do with spices,
sauces or gravies cooked with the meat.  It always ends after the
heat is off and the meat has cooled.  No one else has noticed
the smell.  The only time I ever mentioned it everyone else said,
basically, "It smells great!"  I always have to get some fresh air
when it happens.  It doesn't give me a headache or anything,
but it's such an intensely bad stench that it makes me want to
hold my breath.

I've never smelled anything like it when I'm around a gas-powered
appliance, and I've been careful about CO.

--Bill Thompson
J - 09 May 2005 22:15 GMT
> This smell has only happened when someone's cooking beef.  It's
> happened with electric ovens and stoves.  The smell is really
[quoted text clipped - 9 lines]
> I've never smelled anything like it when I'm around a gas-powered
> appliance, and I've been careful about CO.

Hello Bill, I'm glad you're careful about CO.

There's more than a few here who have problems with scents or odd odours.
So do I and others who don't have Lupus.
Where in the heck are you?  He's in British Columbia (western Province of Canada).
The reason I'm asking is a year ago, my brother decided to stop eating meat; he
thought it was worsening his skin condition. He's the one who'se ANA has been in the
"something's up range' for oh, I'd say now 12-15 years and he can't get a referral to
a rheumey. He's on some hairy'fairy wait list.  Afraid to pressure his doctor for
fear of losing him; afraid that if he gets there, it won't be Lupus (much ado about
nothing).

Anyway, I'd swear you were my brother. <g> He's since restarted meat since I think he
said he was feeling weak without it. He's also always had to sleep with the window
open (in the coldest of weather even) and he's had problems with gassy scents.  He
had to quit a job that required frequent gas-ups for that and other reasons.

I guess this falls under similarities..altho I suppose if you're having seizures, odd
odours can be troublesome.
I saw that on TV once.
J
William R. Thompson - 10 May 2005 06:50 GMT
> There's more than a few here who have problems with scents or odd odours.
> So do I and others who don't have Lupus.
> Where in the heck are you?  

Ogden, Utah, which is about 40 miles/60 km. north of
Salt Lake City.

> He's in British Columbia (western Province of Canada).
> The reason I'm asking is a year ago, my brother decided to stop eating meat; he
[quoted text clipped - 3 lines]
> fear of losing him; afraid that if he gets there, it won't be Lupus (much ado about
> nothing).

I know the feeling.  I did get to see a local rheumatologist
in '97, but I was in good shape at the time and I got the
impression he thought I was wasting his time.  I tried to make
an appointment with him again this year, but it's been so
long since that last appointment that I have to see a regular
MD to get a referral.

(This rheumatologist isn't the one who administered my ANA
test.  That was done by the dermatologist who took care of
my skin cancer.)

> Anyway, I'd swear you were my brother. <g> He's since restarted meat since I think he
> said he was feeling weak without it. He's also always had to sleep with the window
> open (in the coldest of weather even) and he's had problems with gassy scents.  He
> had to quit a job that required frequent gas-ups for that and other reasons.

I've had some other odors that bothered me pretty badly, but
they never seemed too odd.  For a while one magazine used an
ink that stank and made my eyes water, but other people
reported the same problem (someone said that it helped if you
wrapped it in Saran wrap and put it in the freezer for a day
or two.  Happily the publisher stopped using that ink.)

I'm glad to hear your brother is doing better with the meat.

--Bill Thompson
J - 10 May 2005 09:51 GMT
> I know the feeling.  I did get to see a local rheumatologist
> in '97, but I was in good shape at the time and I got the
[quoted text clipped - 6 lines]
> test.  That was done by the dermatologist who took care of
> my skin cancer.)

Hold that for the moment.
Utah's in (what I call) the sunbelt.
J
William R. Thompson - 11 May 2005 10:37 GMT


> Utah's in (what I call) the sunbelt.

Plus, I grew up in southern California, not far from
the beaches.  This was in the late Fifties/Sixties,
when everyone was supposed to tan no matter how
incompetent we were about it.  My brothers and I
would burn every summer, then peel one another's
backs.  We must have looked like blond monkeys
searching one another for lice.

My brother Mark always burned worse than Matt or I
did; he wound up with some large blisters one time.

--Bill Thompson
J - 13 May 2005 11:02 GMT
> Plus, I grew up in southern California, not far from
> the beaches.  This was in the late Fifties/Sixties,
[quoted text clipped - 3 lines]
> backs.  We must have looked like blond monkeys
> searching one another for lice.

Heehee.. I'm picturing that.
I used to get a burn on purpose to get a tan.
Now we know different, don't we?

> My brother Mark always burned worse than Matt or I
> did; he wound up with some large blisters one time.

So did I, under ultraviolet light.
That stuff is nasty. Only 5-10 minutes. Mom was mad as hoppers at me.
J
William R. Thompson - 14 May 2005 07:47 GMT


> > Plus, I grew up in southern California, not far from
> > the beaches.  This was in the late Fifties/Sixties,
[quoted text clipped - 3 lines]
> > backs.  We must have looked like blond monkeys
> > searching one another for lice.

> Heehee.. I'm picturing that.
> I used to get a burn on purpose to get a tan.
> Now we know different, don't we?

I hope so!  I remember being told that a sunburn was
good for you.  That first burn of the summer was said
to build a good base for a nice, healthy tan.  So did
all the ensuing burns that summer (my best tan was
usually easy to distinguish from a sheet of typing
paper.  Usually).

> > My brother Mark always burned worse than Matt or I
> > did; he wound up with some large blisters one time.

> So did I, under ultraviolet light.
> That stuff is nasty. Only 5-10 minutes. Mom was mad as hoppers at me.

Insane as it sounds, we had one of those UV bulbs in
the early Sixties.  Someone must have decided that
we didn't get enough sun in those southern California
winters.  We didn't use it much, though, and it went
in the trash when there was talk about how overexposure
to those sun lamps could cause nerve damage.

--Bill Thompson
J - 16 May 2005 08:00 GMT
> > I used to get a burn on purpose to get a tan.
> > Now we know different, don't we?
[quoted text clipped - 5 lines]
> usually easy to distinguish from a sheet of typing
> paper.  Usually).

Ours just happened usually. We were usually outdoors from sunup till
sundown.
Except for meals and using the washroom.

> > > My brother Mark always burned worse than Matt or I
> > > did; he wound up with some large blisters one time.
[quoted text clipped - 4 lines]
> Insane as it sounds, we had one of those UV bulbs in
> the early Sixties.

Same time frame. Dad rigged it up to help with his shoulder pain.
But I decided to lie down and use it on the abdomen and legs.
Gad, was that painful trying to get into tight jeans with the blisters and
everything.
I fell asleep with it on me.
And I made the same mistake the next year.
We lived near a river - the bestest burns/tans on the river (swimming,
canoeing, chasing pollywogs etc)

>  Someone must have decided that
> we didn't get enough sun in those southern California
> winters.  We didn't use it much, though, and it went
> in the trash when there was talk about how overexposure
> to those sun lamps could cause nerve damage.

Never heard that one. In what way?  Numbness?
J
William R. Thompson - 16 May 2005 11:59 GMT


> > Insane as it sounds, we had one of those UV bulbs in
> > the early Sixties.

> >  Someone must have decided that
> > we didn't get enough sun in those southern California
> > winters.  We didn't use it much, though, and it went
> > in the trash when there was talk about how overexposure
> > to those sun lamps could cause nerve damage.

> Never heard that one. In what way?  Numbness?

I don't know; the problem was described only as "nerve
damage."   I was seven or eight at the time, and if there
were any details I didn't pay attention.

--Bill Thompson
Andy - 10 May 2005 14:27 GMT
In article <427FD309.8A4187C7@execulink.com>, J <seth@anon.ianon> wrote
[]
>Hello Bill, I'm glad you're careful about CO.
>
>There's more than a few here who have problems with scents or odd odours.
>So do I and others who don't have Lupus.

For those who don't know: CO (carbon monoxide) is a gas that can be
produced by combustion with insufficient air. A common cause of this is
inadequate or blocked air vents, chimneys or flues. CO is colorless and
has no smell. When breathed, it displaces the oxygen from the blood,
forming carboxyhaemoglobin which is bluish. One symptom of mild CO
poisoning is a headache; severe CO poisoning rapidly leads to loss of
consciousness and death.

[J: I realise you were referring to a different problem, ie intolerance
of scents. Even I have that!]
Signature

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

J - 10 May 2005 20:24 GMT
> In article <427FD309.8A4187C7@execulink.com>, J <seth@anon.ianon> wrote
> []
[quoted text clipped - 13 lines]
> [J: I realise you were referring to a different problem, ie intolerance
> of scents. Even I have that!]

Hi Andy, I meant not confusing one for the other.
http://groups-beta.google.com/group/alt.support.mcs/msg/915f5493bf937ab9

Similar happened to me in 1999. His was a few years earlier.

These types of things can play havoc with symptoms (and health) and doctors
don't even think of suggesting checking for it.
J
William R. Thompson - 04 May 2005 09:34 GMT

> Hi Bill,
> I doubt a negative ANA test that is ten years old is enough to rule out
[quoted text clipped - 4 lines]
> lot of doctors don't take the time to put the clues together. It is wise to
> monitor things yourself.

Thanks.  After the ANA test I did have a few other blood tests
run by another doctor, but none of them were lupus-specific
and the doctor said everything looked normal.  I had been
taking good care of myself and was in fine shape when I saw
him; maybe I should have partied and worked on my tan beforehand.

He did tell me to come back the next time I got sick.  That
happened the next day, which was a Saturday.

--Bill Thompson
Styner - 04 May 2005 05:08 GMT
I have SLE and have had many flare ups that began with low temps - as low
as 95.6 for me.  Doctors never really paid that much attention to it...but
I always knew that it had to be one more item on the list of signs that my
body was screaming for some kind of attention.  Prednisone will lower
temps, but it never really got them up any of the times mine was low.  It
shouldn't last, though.  Not more that a couple of months, if I remember
correctly.
William R. Thompson - 04 May 2005 09:43 GMT

> I have SLE and have had many flare ups that began with low temps - as low
> as 95.6 for me.  Doctors never really paid that much attention to it...but
[quoted text clipped - 3 lines]
> shouldn't last, though.  Not more that a couple of months, if I remember
> correctly.

Thanks!  I've felt like the only person in the world who's
had his temperature drop.  I think mine went below
95.0 F/35.0 C once, but at the time I wasn't in any shape
to pay close attention.  Whenever I mentioned it to doctors,
it got shrugged off.

One doctor had me on prednisone for a few weeks, and it
helped somewhat.  Unfortunately the doctor didn't see a reason
to pursue that (he was a combination of MD and psychiatrist,
and I was seeing him as a therapist).

--Bill Thompson
J - 06 May 2005 21:58 GMT
> A lot of the problems I've had sound like lupus symptoms:
> heavy fatigue, joint and muscle pain (lasts for days or weeks),
> mouth sores (usually small and painless), rashes (not the malar
> rash; usually it's skin flaking off my face and arms), and my
> hands will go cold and numb.  In addition there are nose bleeds
> and some creative bleeding (spots on my skin, one or two

http://www.niddk.nih.gov/health/hematol/pubs/itp/itp.htm Purpura
Saw nosebleeds mentioned elsewhere for purpura.
A hemotologist could check that, I think.
Having said that, John, who we haven't heard from for ages, has Lupus, and
was having nosebleeds.
I can't remember if it was the Lupus or treatment related.  They would
come on suddenly.

> millimeters across, will open up), plus stomach cramps and
> diarrhea.  All of this happens after I've been in the sun,
> spent too much time under flourescent lighting or in front of
> a CRT, or had any alcohol.

When these events occur has your previous meal been like a person with
prophyria - eat regular with carbs ? (or not)
http://www.cpf-inc.ca/dietandcarbs.htm
Were you tested during a period of worse attacks?

> I know all of this sounds like lupus, but one problem I have
> that doesn't match the list of symptoms is this: my temperature
> will drop one or more degrees (sometimes down to 95 F/35 C).
> When I go to see the doctor this month should I ask him about
> lupus, or should he look at something else?

Seems to that any circulatory problem could cause that.
I have to eat higher carb to keep my temperature up.
Temperature is controlled in the brain also.  Has your brain been checked?

Which type of skin cancer did you have?  Some can recur elsewhere.
And how was it treated?

> I had an ANA test about ten years ago.  I don't know what the
> numbers were; the doctor would only tell me "the numbers were
> too low for lupus."

Way too low isn't specific enough. We need numbers (then and now).
Can you not get copies of your lab tests? Highly recommended.

>  I went through a porphyria misdiagnosis
> after that, and I've seen two therapists who both decided it
> isn't psychosomatic.

I was tested for porphria. (urine coollection and bloodwork) I'm not
toally convinced that I don't have it.
If I follow the porphyria eating guidelines, I don't have gastro attacks.
Sounds to me that you might have lupus, with other side syndromes.
J - not a doctor
William R. Thompson - 07 May 2005 09:18 GMT
> http://www.niddk.nih.gov/health/hematol/pubs/itp/itp.htm Purpura
> Saw nosebleeds mentioned elsewhere for purpura.
[quoted text clipped - 3 lines]
> I can't remember if it was the Lupus or treatment related.  They would
> come on suddenly.

I've never been treated for lupus, and these nosebleeds were going on
long before I suspected that.

> When these events occur has your previous meal been like a person with
> prophyria - eat regular with carbs ? (or not)
> http://www.cpf-inc.ca/dietandcarbs.htm
> Were you tested during a period of worse attacks?

I had a set of tests for various porphyrias during one attack.  I'd
gone in the sun for a few minutes to make sure there was something
for the tests to see.

> Seems to that any circulatory problem could cause that.
> I have to eat higher carb to keep my temperature up.
> Temperature is controlled in the brain also.  Has your brain been checked?

No.  It works moderately well most of the time.  Well, I think it
does.  I've never found a link between my diet and my temperature,
or any of this.  I had several years where I thought the problem was
food allergies, but eliminating various things from my diet didn't help.

> Which type of skin cancer did you have?  Some can recur elsewhere.
> And how was it treated?

It was a benign, basal cell cancer.  It was removed surgically.  I've
had about twenty precancerous lesions removed with a liquid nitrogen
spray.

> > I had an ANA test about ten years ago.  I don't know what the
> > numbers were; the doctor would only tell me "the numbers were
> > too low for lupus."

> Way too low isn't specific enough. We need numbers (then and now).
> Can you not get copies of your lab tests? Highly recommended.

I'll see if I can, but the test was in 1996.  I don't know if
the doctor keeps his records that long.

> I was tested for porphyria. (urine collection and bloodwork) I'm not
> totally convinced that I don't have it.

I got a look at the test results from the second set of tests I
had.  The lab included the range of figures that are typically
diagnostic of porphyria, and my numbers were all well below that
range; in the range people normally have.  I was tested for all
three photosensitive types of porphyria (variegate P., acute
intermittent P. and congenital erythepoeic P. (sp?).  Plus I
didn't have the right symptoms--no huge blisters, no red-brown
tooth discoloration, no consistently dark urine that turns purple
under UV light.

Sometimes I wish the doctor who suggested porphyria had been
right.  It would have been bad, but at least I'd have
known what was going on.

> If I follow the porphyria eating guidelines, I don't have gastro attacks.
> Sounds to me that you might have lupus, with other side syndromes.
> J - not a doctor

I'm no doctor, either.  Thanks for your time--I appreciate it.

--Bill Thompson
J - 08 May 2005 17:27 GMT
> > http://www.niddk.nih.gov/health/hematol/pubs/itp/itp.htm Purpura
> > Saw nosebleeds mentioned elsewhere for purpura.
[quoted text clipped - 24 lines]
> had about twenty precancerous lesions removed with a liquid nitrogen
> spray.

Hello Bill,
What I meant about the brain is (getting scans to make sure) that there's
nothing going wrong in the brain like :
bleeding,  aneurysms, tumors (apparently basal cell : Rarely, however, tumors
develop on non-exposed areas.), that might be affecting your temperature control
area, of the brain. Did you see a neurologist for the seizures? Have you had
recent scans?

I'm trying to rule some things out: hope you understand.
J

Note: I snipped but read the rest
It might be helpful to a rheumy, if you can dig up those old records.  I would
think, if you're in the US, due to litigation issues, they might keep them even
longer than here (Canada).  I think here it's 7 years, but I could be wrong. On
the other hand, they charge for the digging and photocopying.  If they were all
done at the same lab and ordered by the same doctor, I wonder if that's
accessible to you (through asking the lab)?
The reason I ask, is I had one doctor tell me (about my brother) that "shrug,
ANA 1:1280 is nothing compared to patients in the tens of thousands range"
whereas  1:1280 usually means "something's up, but what..."
And he's right in one way, it's non-specific.
William R. Thompson - 09 May 2005 05:06 GMT
> Hello Bill,
> What I meant about the brain is (getting scans to make sure) that there's
[quoted text clipped - 3 lines]
> area, of the brain. Did you see a neurologist for the seizures? Have you had
> recent scans?

> I'm trying to rule some things out: hope you understand.

I understand, thanks.  I haven't had any brain scans or X-rays.
None of the doctors who looked at me suggested anything like that.

I only had the one seizure, and it happened after I took niacin.
A doctor had suggested it to lower my cholesterol.  He said that
niacin caused problems for some people, although he wasn't specific.
(Now that I think of it, my cholesterol has been lower since I
started avoiding the sun.)

I'll have to see if my old ANA test results are still available.

--Bill Thompson
BJ - 09 May 2005 20:42 GMT
Hi Bill,
The only negative effect I have ever heard about niacin is sudden flushig of
the skin.
BJ-Sk. Canada

> > Hello Bill,
> > What I meant about the brain is (getting scans to make sure) that there's
[quoted text clipped - 18 lines]
>
> --Bill Thompson
BJ - 09 May 2005 23:42 GMT
Just read something else here Bill. This is in addition to the things J
added, although I may have missed this in her post. It does say that niacin
can cause hypotension. With that in mind, you could pass out if your blood
pressure got too low. That could be confused with a seizure perhaps.
> Hi Bill,
> The only negative effect I have ever heard about niacin is sudden flushig of
[quoted text clipped - 27 lines]
> >
> > --Bill Thompson
J - 09 May 2005 22:37 GMT
> > Hello Bill,
> > What I meant about the brain is (getting scans to make sure) that there's
[quoted text clipped - 10 lines]
>
> I only had the one seizure,

How do you know you had a seizure? vs some other type of event?
like a mild stroke or stress or fell asleep or symptoms of low blood sugar or some
type of event from too much carbon dioxide (I forget what's called) ?  Did you cough?
Hold your breath?  Subconsciously stop breathing?
What were the manifestations?

> and it happened after I took niacin.
> A doctor had suggested it to lower my cholesterol.  He said that
> niacin caused problems for some people, although he wasn't specific.
> (Now that I think of it, my cholesterol has been lower since I
> started avoiding the sun.)

Geez that's weird or it could be coincidental or see below..
Here's what I've gathered about niacin

http://www.nlm.nih.gov/medlineplus/ency/article/002409.htm
Niacin (also known as vitamin B-3) is found in dairy products, poultry, fish, lean
meats, nuts, and eggs. Legumes and enriched breads and cereals also supply some
niacin.
A deficiency of niacin causes pellagra. The symptoms include inflamed skin, digestive
problems, and mental impairment.

Large doses of niacin can cause liver damage, peptic ulcers, and skin rashes. Even
normal doses can be associated with skin flushing. It can be prescribed as a treatment
for elevated total cholesterol and other types of lipid disorders, but it should only
be used with medical supervision due to its potential for severe side effects.

I checked my porphyria book and there's nothing mentioned there for niacin nor
nicotinic acid

I don't know who this person is and if she knows what she's talking about.
http://www.findarticles.com/p/articles/mi_m0ISW/is_2003_June/ai_102372167
The correct balance and availability of adrenal hormones and also of eicosanoids
control the flow of nutrients (including oxygen) into the cells. (3) Perhaps even more
important, heme is needed for the production of red blood cells. (2) The consequent
increase in the oxygen, and nutrient-carrying capacity of the blood, as well as the
cell's renewed ability to receive the required nutrients, along with niacin's effect
on the central nervous system and the parietal cells, fully restored the production of
stomach acid in the 39 year-old patient.

Very high doses of niacin (3,000 mg or more daily) can cause liver damage, diabetes,
an inflamed stomach, eye damage and elevated levels of uric acid which can cause gout.
The inositol hexaniacinate form of niacin is not known to cause any side effects, but
nutritionally knowledgeable doctors advise that neither form of niacin be taken in
large amounts without a nutritionally-oriented doctor's counsel. (4)

In addition, high doses of niacin can cause an acute attack in someone with porphyria,
simply because niacin stimulates the production of heme. (5) The latter is produced by
the pophyrin enzymes. Mutations or defects in the eight precursors of porphyrin
enzymes cause the various inherited or acquired errors of metabolism in porphyria
patients. Because heme can be produced in every cell, anything that triggers the
production of heme to a larger extent can initiate a highly damaging, and often
extremely painful, free-radical chain reaction that affects many organs and systems
throughout the porphyria patient's body. (2) Not only the patient, but also all of his
or her physicians need to know what to avoid, it is sometimes difficult and it can be
impossible to avoid a porphyria attack, but every effort must be made; an acute
hepatic porphyria attack may cause paralysis or can even kill the patient. (6,7)

The body responds differently to the various mutations. Different porphyrias (or
mutations that lead to the tendency for porphyrins to accumulate throughout the body)
need different treatments. It is essential that patients who may have porphyria
receive the proper testing and interpretation of the tests, as well as the correct
treatment, in as timely a manner as possible. (7) For more information please contact
the American Porphyria Foundation, P.O. Box 22712, Houston, Texas 77227 USA. Their
website is www.enterprise.net/apf. The website password <HOUSTON> ensures ready access
for physicians.

More food for thought (I can't copy it all here)- maybe print it up and discuss with
your doctor?
http://www.merck.com/mrkshared/mmanual/section2/chapter15/15c.jsp
SECONDARY ELEVATIONS OF LDL

In North America and Europe, dietary cholesterol and saturated fats are the most
common causes of mild to moderate elevations of LDL.

Hypercholesterolemia is common in biliary cirrhosis, as is a marked increase in the
serum phospholipids and an elevated free cholesterol/cholesterol ester ratio (> 0.2).
The plasma is not lactescent because the overabundant lipoproteins (lipoprotein X) are
small and do not scatter light. Planar xanthomas (see Plate 15-2) and xanthelasma (see
Plate 15-3) are common with prolonged and severe lipemia.

Hypercholesterolemia due to increased LDL levels may be associated with
endocrinopathies (hypothyroidism, hypopituitarism, diabetes mellitus) and is usually
reversed by hormone therapy. Hypoproteinemias as in the nephrotic syndrome, metabolic
aberrations such as acute porphyria, or dietary excesses with cholesterol-rich foods
may also produce elevated LDL levels. LDL levels rise at menopause and fall in
response to estrogen replacement therapy. TC levels may be elevated secondary to
increased HDL levels in postmenopausal women or in younger women taking oral
contraceptives or hormone replacement therapy, which contains primarily estrogen.

Treatment of Elevated LDL

The major reason for therapy is to prevent premature development of atherosclerosis
and to lessen the likelihood of CAD and MI. In addition, with lowered cholesterol,
unsightly xanthomas will cease growing and regress or disappear.

In general, for mild or moderate elevations of LDL cholesterol, an altered diet is
usually sufficient and is the initial step in treatment. Dietary changes usually
should be tried for at least 6 mo before determining that a drug is also needed. For
severe hypercholesterolemia (LDL > 220 mg/dL [> 5.70 mmol/L] or clinical evidence of
CAD, peripheral vascular disease, or cerebrovascular disease), a drug should be added
sooner. For familial hypercholesterolemia, drug therapy is almost always indicated,
often in childhood. Depending on the lipoprotein excess present, familial combined
hyperlipidemia responds well to weight reduction and restriction of saturated fat and
cholesterol, followed when necessary by niacin 3 g/day, a statin (see below), or a
combination of cholestyramine with niacin or gemfibrozil. Some patients with polygenic
hypercholesterolemia are sensitive to dietary restriction of saturated fat and
cholesterol. When this fails, therapy with a 3-hydroxy-3-methylglutaryl coenzyme A
(HMG-CoA) reductase inhibitor (a statin), cholestyramine, or niacin will usually lower
the elevated LDL to normal levels.

Niacin (nicotinic acid) may be useful for elevated LDL levels, but the high dosage
required (2 to 9 g/day po in divided doses with meals) coupled with its side effects
(eg, gastric irritability, hyperuricemia, hyperglycemia, flushing, and pruritus) often
restricts its use. Niacin is most effective when combined with cholestyramine in the
severe heterozygote with familial hypercholesterolemia.

Thyroid analogs like D-thyroxine effectively lower LDL levels but are contraindicated
in patients with suspected or proven heart disease.[]

So it seems to be saying that it's only effective in high doses and both Medline and
Merck say that high doses can cause problems.  Not sure where I'm going with this, but
since the above mentions hormones, you might want to look at Lupus in men (I'll see if
I can find and post it - it might be in the FAQ or Andy might have it handy).. I
beleive it also mentions hormones; many of the women here also relate problems with
hormone fluctuations.
J
William R. Thompson - 10 May 2005 07:19 GMT


> > I only had the one seizure,

> How do you know you had a seizure? vs some other type of event?
> like a mild stroke or stress or fell asleep or symptoms of low blood sugar or some
> type of event from too much carbon dioxide (I forget what's called) ?  Did you cough?
> Hold your breath?  Subconsciously stop breathing?
> What were the manifestations?

About a half-hour after I took the niacin I started having
cramps and diarrhea.  I resigned myself to having three days
of this, er, usual experience.  Then I started to feel shaky,
which was new, so I lay down.  I started shaking harder and
harder, along with this intense waves-of-heat sensation.  I
couldn't control any of my muscles, including bladder and
bowels (well, it was time to do the laundry anyway, and thanks
to the recent trip to the bathroom the mess wasn't that bad).  
This went on for maybe fifteen minutes before it eased off.  
I don't think I had any trouble breathing.  Maybe it wasn't
a seizure by medical standards, but it was close enough for me.

The doctor had warned me that some people had trouble with
niacin, so I assumed that this was one of the things he
had in mind.  He didn't act like it was a big deal when I
mentioned it at the next visit.

(more snippage)

> Here's what I've gathered about niacin

> Large doses of niacin can cause liver damage, peptic ulcers, and skin rashes. Even
> normal doses can be associated with skin flushing. It can be prescribed as a treatment
> for elevated total cholesterol and other types of lipid disorders, but it should only
> be used with medical supervision due to its potential for severe side effects.
Thanks for the impressive amount of research you did.
The doctor who ruled out porphyria in my case was a
specialist in the condition, so it's unlikely that I'm
dealing with that.  But the mention of niacin and lipid
disorders makes me wonder what niacin would do to
antiphospholipid syndrome.

--Bill Thompson
J - 10 May 2005 12:19 GMT
> > What were the manifestations?
>
[quoted text clipped - 10 lines]
> a seizure by medical standards, but it was close enough for me.
> more snippage)

Well, it looks to me that you had an unusual and prolonged reaction to niacin.
Perhaps it's because of the known side effects/higer dose? combined with your "condition".
(which may or may not be Lupus)
Symptoms and signs of niacin deficiency, pellagra
http://www.medterms.com/script/main/art.asp?articlekey=4821
   * Diarrhea;
   * Dermatitis: A scaly rash on skin exposed to light or trauma;
   * Dementia: Mental disorientation, delusions and depression; and
   * Death.

The diet to prevent it is
http://www.medicinenet.com/niacin/article.htm
Niacin is available in slow-release forms (Niaspan, Slo-Niacin). Natural sources of niacin
include meat, poultry, liver, fish, nuts, green vegetables, whole grain and potatoes."

Think carefully about this one, Bill.  Do you follow that type of diet, on a regular basis?
I pretty well do, but don't eat fish and nuts. But I hope that the whole grains make up for
that.
I don't eat roast, but do eat red meat 2-3 times a week.
The whole grain that I eat, is called 7-grain bread and better quality cereals. Some breads
have nothing much of use in them. Ditto for cereals, even (some) bran cereals has too much
sugar in it.

> > Here's what I've gathered about niacin
>
[quoted text clipped - 7 lines]
> specialist in the condition, so it's unlikely that I'm
> dealing with that.

Mine wasn't but he was a hematologist who claimed to know about it.
So we've ruled out porphyria for you.

> But the mention of niacin and lipid
> disorders makes me wonder what niacin would do to
> antiphospholipid syndrome.

We have not ruled out APS (above) - Hughes' syndrome
We have not ruled out Lupus (for now, based on similarities to John and several posters
here, I'm ruling you in)
We have not ruled out Raynaud's
We have not ruled out B12 and Schilling's
We have not ruled out diet.
Once you consider what I've said above about diet, do you feel you have been (over the
years) and are now getting an adequate and balanced diet?
If yes, let's look at malabsorption syndromes and B12.
http://www.postgradmed.com/issues/2001/07_01/dharmarajan.htm
http://www.nlm.nih.gov/medlineplus/ency/article/000574.htm

PS If I were you, I'd toss out all those other links (that I provided previously) except for
the diagnosis part of the Lupus FAQ

Check for APS
Check for B12 and schilling

Ask your doctor to have a look at this and see what's been ruled out for conditions or
deficiencies
http://www.healthatoz.com/healthatoz/Atoz/ency/malabsorption_syndrome.jsp

I've ruled out for you:
Intestinal surgery
Use of certain drugs, such as mineral oil or other laxatives
Excess alcohol consumption.
Intestinal surgery

I haven't ruled out others there
Travel /parasites/infection
Whipple's disease
Family history of cystic fibrosis
How's you drinking water there?  Have you had it checked? I have a report that water from
northern US is full of raw sewage and Utah's on the list. I'll have to post separately.

Some of the dietary deficiencies say "may" be low.  Which in my view, indicates might show
up in a low range, but not definition.
Also note that it says that cholesterol may be low.
So in theory, if you have a malabsorption problem combined with high cholesterol, your
cholesterol levels might actually be higher than they currently show up on tests.
Speaking of cholesterol, there's 2 types: one is familial and the other is diet related.
If you've been following the FDA food pyramid which includes the above diet, then you may
have the familial type of high cholesterol, which requires medication. (or that's my
understanding from my friend - she did not respond to dietary changes, her husband did).
It's also on the internet, but I don't have the link at the moment.

I would feel better if you had most of the diagnostic tests there (perhaps not MRI). I've
had most of them over the past 6 years, including the 72-hour fecal fat abosption. If I
recall correctly, something pancreatic enzymes were checked for me, but I'm not sure.
Another is diabetes..I was told no some years ago and now they're saying "yes".

Finally, I want to discuss the temperature drops:Seems to me that it would be expected that
if you're exposed to heat/sun, that coming in from that environment (like Utah) could result
in your body's temperature mechanism trying to make a sudden adjustment; so I wouldn't worry
too much about listing that ; except to confirm in your mind, that someone else here with
Lupus experiences same.  Same for your nose bleeds.

I just want to make sure nothing gastro related is happening..and it has also happened to
other posters here.
For instance, Grace has something cystic-fibrosis like happening to her (lungs).
Wes, pancreatitis - had to have numerous tests and still does not have a Lupus diagnosis.

So it seems to me, if we clear all those above, we're left with Lupus, Raynaud's,
B12/Schilling's and APS and high cholesterol.  Which is right back where we started. <g>
Get tested for B12 /schilling's as BJ suggested, APS and after that if treatment is
required, we'll talk. Injections for B12. No idea about APS because you already have
bleeding problems. I"ve never done the schillings that those 3 tests should be simple enough
to do but the test seems to look for similar as the malabsorption one does, so skip the
bloodwork for malabsorption and go with Schilling's ..but do have some gastro tests and
scans, just to make sure nothing more serious isn't happening there.

At that point, (no B12 deficiency or deficiency and properly treated), nothing on gastro
tests, then off you go to a rheumy, IMO
Stay out of the sun in the meantime.
J
J - 10 May 2005 12:22 GMT
> Ask your doctor to have a look at this and see what's been ruled out for conditions or
> deficiencies
[quoted text clipped - 12 lines]
> How's you drinking water there?  Have you had it checked? I have a report that water from
> northern US is full of raw sewage and Utah's on the list. I'll have to post separately.

http://groups-beta.google.com/group/soc.retirement/msg/4fd25398aacf4e6c
The full article and worst locations are mentioned here.
J
J - 10 May 2005 12:42 GMT
> > Ask your doctor to have a look at this and see what's been ruled out for conditions or
> > deficiencies
[quoted text clipped - 16 lines]
> The full article and worst locations are mentioned here.
> J

I think ignore this - I think it's saying that Utah's water is good.
J
William R. Thompson - 11 May 2005 10:31 GMT
(lot of snipping, but nothing ignored--thanks again
for your time and effort)

> Well, it looks to me that you had an unusual and prolonged reaction to niacin.
> Perhaps it's because of the known side effects/higher dose? combined with your "condition".

Possibly.  The dose I took wasn't all that high--125 mg.,
about five times the recommended daily requirement.  I've
had trouble with other vitamins when I've taken more
than the daily requirement, but normally it's just an
upset stomach.  I do take vitamins, and I'm careful now
not to OD on them.

> Once you consider what I've said above about diet, do you feel you have been (over the
> years) and are now getting an adequate and balanced diet?

My diet is fine, I think.  There's always good stuff
from the four known food groups, and I don't do much
in the way of junk food.

I spent several years thinking the problem was food
allergies.  That included a set of allergy scratch tests,
which came back negative except for some mild grass
allergies.  I persuaded one doctor to test for celiac
disease (the symptoms were similar, and a cousin had
been diagnosed with it [misdiagnosed, it turns out],
and that test came back negative.  The doctor checked
a few other things at the time, for parasites and
infections, and found nothing.

I tried eliminating various items from my diet (dairy,
corn, egg--name it) with no good results.  The long and
the short of it is, alcohol aside, I couldn't connect
my diet to the problem.

> I haven't ruled out others there
> Travel /parasites/infection
> Whipple's disease
> Family history of cystic fibrosis
> How's you drinking water there?  Have you had it checked?

The local water supply was checked a few years ago,
when there were concerns about waste leakage from the
two local military bases.  The water supply is okay.

> Another is diabetes..I was told no some years ago and now they're saying "yes".

One of my brothers developed juvenile diabetes when
he was ten, so I keep an eye out for that problem.
I've been fine so far.

> Finally, I want to discuss the temperature drops:Seems to me that it would be expected that
> if you're exposed to heat/sun, that coming in from that environment (like Utah) could result
> in your body's temperature mechanism trying to make a sudden adjustment; so I wouldn't worry
> too much about listing that; except to confirm in your mind, that someone else here with
> Lupus experiences same.  Same for your nose bleeds.

I've had the temperature drops after spending too
much time on-line, as well as after having had a drink
or using something with aspirin in it.  Fluorescent
lights, including street lamps, will do it to me as well.
I've been out on both very hot and very cold nights,
and not had any trouble with my body temperature
afterward.

> So it seems to me, if we clear all those above, we're left with Lupus, Raynaud's,
> B12/Schilling's and APS and high cholesterol.  Which is right back where we started. <g>

Running laps never did me any harm.

> At that point, (no B12 deficiency or deficiency and properly treated), nothing on gastro
> tests, then off you go to a rheumy, IMO
> Stay out of the sun in the meantime.

I will; thanks again.

--Bill Thompson
J - 13 May 2005 12:05 GMT
> (lot of snipping)
> > So it seems to me, if we clear all those above, we're left with Lupus, Raynaud's,
[quoted text clipped - 7 lines]
>
> I will; thanks again.

Hi Bill,
You even covered (ruled out)  things that I forgot - celiac.
Welcome to alt.support.lupus

Hope to hear from you often.
We care.
J
William R. Thompson - 14 May 2005 08:07 GMT
> Hi Bill,
> You even covered (ruled out)  things that I forgot - celiac.
> Welcome to alt.support.lupus

> Hope to hear from you often.
> We care.

Thank you!

--Bill Thompson
William R. Thompson - 14 May 2005 10:40 GMT
> Here's what I've gathered about niacin

> http://www.nlm.nih.gov/medlineplus/ency/article/002409.htm
> Niacin (also known as vitamin B-3) is found in dairy products, poultry, fish, lean
> meats, nuts, and eggs. Legumes and enriched breads and cereals also supply some
> niacin.
> A deficiency of niacin causes pellagra. The symptoms include inflamed skin, digestive
> problems, and mental impairment.

I did some more checking on pellagra, including some
historical websites and a few old books on my shelves.
(My hunch is that the modern texts are written by
people who've never seen a case of it.)

The dermatitis in pellagra can be mild, but in severe
cases it can be gross enough to be mistaken for leprosy.
The mouth sores usually include the tongue; there's
redness and swelling of the tongue, plus sore areas.
One interesting point from an old Merck Manual is
that "sunlight can cause butterfly-shaped lesions
on the face" (although the term "malar rash" isn't
used here, or in the section on lupus).

If you don't have Schillings' syndrome, you have to
go out of your way to develop pellagra.  A century
ago it was common in the American South.  A public
health official from Washington, Dr. Joseph
Goldberger, was sent from Washington to investigate
the problem in 1915.  He found the connection with
the diet (poor Southern farmers seemed to live
exclusively on corn, sorghum and pork fat).  After
that it only took twenty-odd years to convince the
medical community that pellagra was caused by diet
and not by infection.  A fascinating story.

Apparently it takes five or six months of niacin
deprivation to develop pellagra.

-------------------

From the 1950 Merck Manual (8th edition):  "The complete
syndrome of advanced niacinamide deficiency (pellagra),
with scarlet stomatitis and glossitis, diarrhea,
dermatitis and mental aberrations, is well known [!].
The several symptoms of deficiency may, however,
appear alone or in various combinations.

"There are four general types of cutaneous lesions:

"1: The first and most acute consists of erythema
followed by vesiculation, bullae, crusting and
desquamation.  Secondary infection is common and
usually results from exposure to sunlight (actinic
trauma).  

"2:  The second type, also acute, is intertrigo,
characterized by redness, maceration, abrasion and
secondary infection in the characteristic
intertriginous areas.

"3: The third is chronic hypertrophy: the skin becomes
thickened, inelastic, fissured, and deeply pigmented
over pressure points.  There is often secondary
infection.  When healing starts the lesions often
shows a sharply defined perly border of regenerating
epithelium.

"4: The fourth type consists of chroinic ichthyotic
lesions, with dry, scaly, atrophic, inelastic skin,
too large for the part it covers.  This usually is
seen only in older pellagrins.  Distribution of the
lesions is more characteristic than their form.  They
occur at trauma points; sunlight causes butterfly-
shaped lesions on the face and affects other exposed
parts.  The cutaneous lesions are most frequently
symmetrical but unilateral lesions are sometimes seen.

"Changes in the mucous mebranes involve chiefly the
mouth--sometimes also the vagina, urethra and conjunctiva.
Scarlet glossitis and stomata are characteristic of
acute niacinamide deficiency.  The tip and lateral
margins of the tongue and the buccal nucosa around
Stenson's ducts are first affected.  As the lesion
progresses, the entire tongue and oral mucous membranes
become a bright scarlet color.  Soreness of the mouth,
increased salivation, and edema of the tongue are
present.  Ulcerations may appear anywhere, but are
especially common on the undersurface of the tongue,
the mucosa of the lower lip, and opposite the molar
teeth.  They often are covered by a grayish slough
containing Vincent's organisms.

"Gastrointestinal symptoms are indeterminate in early
cases: there may be burning of the mouth, pharynx and
esophagus, and abdominal discomfort and distension; later,
nausea, vomiting and diarrhea.  Diarrhea is the
classic gastrointestinal symptom and is of serious
import.  It often is bloody because of the
gastrointestinal hyperemia and ulceration.

"Three types of CNS involvement are observed.  

"1: The first and most frequent is a neurasthenic
syndrome indistinguishable from that of thiamine
deficiency.

"2: The second is organic psychosis, usually
characterized by memory impairment, disorientation,
confusion, and confabulation.  In some patients,
excitement, depression, mania, and delirium predominate;
in others the reaction is paranoid.

"3: The third type is the "encephalopathic syndrome."
The clinical picture of encephalopathy due to niacinamide
deficiency is fairly well defined and is characterized
by clouding of consciousness, cogwheel rigidities of
the extremities, and uncontrollable sucking and
grasping reflexes.  This syndrome is most common after
a period of delirium or high fever, or postoperative
following a series of dextrose infusions without
preventive vitamin therapy.  The peripheral neuropathy
and signs of spinal tract involvement noted probably
result from a simultaneous thiamine deficiency.
There is no characteristic or diagnostic laboratory
finding [in 1950]."

From the 1963 Encyclopedia Britannica: "If dermatitis
is present it begins as an erythema resembling sunburn
that becomes reddish-brown, rough and scaly.  Lesions
may appear on any portion of the body, but the commonest
sites are the hands, wrists, elbows, under the breasts,
knees, feet and perineal regions.  A sharp line of
demarcation separates the lesion from the healthy skin.
Glossitis and stomatitis are present.  The tongue
becomes red and thickened and the mucuous membrane
becomes reddened.  Severe watery diarrhea often is
present in the acute stages.  Nervousness, insomnia,
headache and dizziness may be present, and pellagrins
are subject to periods of depression and apprehension.
Unless early and adequate treatment is administered,
confusion, hallucinations and complete disorientation
as to time, place and person develop."

--Bill Thompson
J - 16 May 2005 07:45 GMT
> > Here's what I've gathered about niacin
>
[quoted text clipped - 33 lines]
> Apparently it takes five or six months of niacin
> deprivation to develop pellagra.

[...]
Thanks Bill,
In Canada, we have food and pharmaceutical labelling laws.
I just checked the bread I eat and 30% of its nutritive value is Niacin.
So unless a person is eating "garbage" type bread, it's probably in your breads also.
So yes, unless a person has a malabsorption problem, I expect we all get enough.
J
J - 27 May 2005 12:14 GMT
> Hello, everyone.
>
[quoted text clipped - 8 lines]
> spent too much time under flourescent lighting or in front of
> a CRT, or had any alcohol.

Hi Bill, I was relooking at your first post.
I think the spots on your skin are called petechiae
Some differentials are here
http://www.nlm.nih.gov/medlineplus/ency/article/003235.htm

I have to ask you (perhaps again, I forget).

Have you seen a gastroenterologist for a colonoscopy?
The worry would be cancer.

Another cancer worry with the petechiae, would be some form of leukemia.
(see above Medline list)

or was this one discussed with the rheumy?
http://www.nlm.nih.gov/medlineplus/ency/article/000425.htm
Does it seem to fit?
J
William R. Thompson - 28 May 2005 07:48 GMT
> Hi Bill, I was relooking at your first post.
> I think the spots on your skin are called petechiae
> Some differentials are here
> http://www.nlm.nih.gov/medlineplus/ency/article/003235.htm

> I have to ask you (perhaps again, I forget).

> Have you seen a gastroenterologist for a colonoscopy?
> The worry would be cancer.

That's one of the things the doctor checked for at the visit.
So far I seem to be cancer-free, knock wood (he says as
he raps the side of his head with his knuckles).

> Another cancer worry with the petechiae, would be some form of leukemia.
> (see above Medline list)

> or was this one discussed with the rheumy?
> http://www.nlm.nih.gov/medlineplus/ency/article/000425.htm
> Does it seem to fit?

That one doesn't seem to fit; I don't get those huge spots,
or some of the other symptoms.

--Bill Thompson
 
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