deneb@cox.net (susan

Hi all,
I appreciate all the possible answers and other responses I've received re: these pesky little things. Other than the one dark, round sore on the inner cheek that someone found, it doesn't sound like others have this problems per se. My skin, mouth, etc. is SO dry, I keep mentholatum on my lips all the time especially at night. So it's not splits at the corners. I've had those before and I know what you're talking about. They hurt. Also, all my body skin is so dry...and I attribute that both to CFS and hypothyroidism, although before CFS, I used a lot of lotion on my skin as I lived in S.Arizona, so I didn't notice especially dry skin. That's when I could stand the sun.

No, these are actual sores and spots (not all are sore or even most)...it's just that they occur with regularity, especially if I'm more run down than my normal run down"ness!! If that makes any sense.
I guess a lot of people don't necessarily look in their mouths, other than their teeth. But many of my reddish, pink, or whitish "open" sores occur where my inner lips touch my teeth and also on the upper and lower front gums. The cheek sores are sometimes like this, but are usually accompanied by one or more dark completely round spots of dark purple color. I'm pretty sure it's related to one of the Herpes virus family, but haven't even read about it in CFS literature. As I said before, it's not Herpes Simplex 1 or 2.

Ok, so enough about the spots and sores which aren't really that sore...just look like it. Many of us with CFS have so many similar things that shouldn't have a thing to do with CFIDS, like TMJ. I have that...and grinding my teeth may also cause the above problems...I doubt it as I've always had TMJ as an adult, but you never know.
And I've heard many a PWC say they also have TMJ. If you open your mouth, and there's a pop...or it can sort of lock up on you...you probably have TMJ.

I received a new e-mail about another CFS group list and wondered if others had too. I just want to know it's legitimate...that's all. Didn't have any particular sponsor...guess I'll see.

Another symptom is always having night vision my whole life, but now when the lights are off...I'm completely disoriented and can turn right into a wall in my well known layout of my house or bedroom.Ow!! Anyone lose any night vision or have disorientation in the dark?? I used to laugh as I turned out the lights as people stumbled to bed...I thought it was funny. NOT!! As I found out.I never realized that not everyone had some night vision. Heck, I used to go hiking in the mountains (even with rattlesnakes, my worst phobia) with a partial moon as I could see the path even if my friends couldn't. That's so weird.

I saw Martha Stewart showing another "good thing" as she is want to do....an "inverter that grabs your ankles but doesn't cut off your circulation. Martha was going up and down, talking with this woman about how good it feels, getting all your bones and muscles to reverse, along with the blood stream. Keeps you young and fit! I thought about all of us doing that and passing out on Martha's "it's a good thing" show!! LOL : )

I'll go now. Just blabbing as an outlet to no company except the dog and cats...they don't respond much. Suzq..(BTW, I started the 2000 mg. of Vit C at night...no real results yet...but I'll let you know)

robertke@comcast.net (robert

Hi Suzy & All

If you have CFS, the virus causing the disease, EBV or CMV can cause a
variety of symptons, depending where in the body the virus travels to. It
doesn't just affect the left ventricle.

Bob Kessler

deneb@cox.net (susan

Bob,
Oh, I've got CFS alright. Yep, and although I was borderline for CMV way
back when, I haven't had it tested for some time. Yes, EBV and HHV6 and 7
were all positive + John Martin's test for the stealth virus/spuma virus.So
I know that's where it comes from...I just hadn't heard of anyone else with
them. My doctors are seem stumped...there's a surprise!!Also, I did have Hep
B at one time, but it's cleared, or so says the lab. Didn't even know I had
it.
But I'm still on course to see Dr. Lerner after Jan 1 in his office. My
heart is what I'm most worried about. I also had a stroke that I managed to
stop before permanent damage when an irresponsible doctor took me off cold
turkey from Klonopin. That was pure he.... Thanks for your help though. I'll
let you know as my progress with Lerner develops. Thanks. Suzq
----- Original Message -----
From: "Robert Kessler" <robertke@comcast.net>
Newsgroups: alt.med.cfs
To: <CFS-L@MAELSTROM.STJOHNS.EDU>
Sent: Thursday, October 09, 2003 12:22 PM
Subject: Re: Inner mouth sores...and other stuff


sense.

ahaber5598@aol.com (a

Have you been tested for Sjogren's syndrome? I have it and when my mouth was
really bad I used interferon lozenges ( a prescription)--they worked like
magic and
I haven't gotten them back since. You need a sophisticated rheumatologist to
get this diagnosis and prescription, although the younger rheums are getting
better at this (they're learning about it in good residencies).Thalidomide is
used in
HIV and chemo patients for apthous ulcers--maybe what you have--but that's
difficult to get a scrip for--compassionate use only--and I think you have to
fail
the interferon lozenges.

ahaber5598@aol.com (a

You can try lysine--till you can find someone who prescribes the heavier duty
stuff.
Any good health food store--some drugstores. I'm never without it if my mouth
gets
dry.

deneb@cox.net (susan

Thanks. I'll look into that, as I've heard of Sjogren's syndrome and CFS in
the same articles. Is one a misdiagnosis of the other? I wonder. Thanks
again. Suzq
----- Original Message -----
From: "A Haber" <AHaber5598@aol.com>
Newsgroups: alt.med.cfs
To: <CFS-L@MAELSTROM.STJOHNS.EDU>
Sent: Monday, October 13, 2003 7:50 PM
Subject: Re: Inner mouth sores...and other stuff

duty


mouth

deneb@cox.net (susan

Hi, Just a question. I looked at the tests to determine Sjogren's
Syndrome...and it is quite similar to some of the tests I have had done but
some time ago. Do you have CFS also? Just wondering. I thought the dry mouth
and swallowing was a characteristic of all CFS patients also?? Hmm...now you
have me thinking. I think I had my RF checked and it was OK. I have
osteo-arthritis I've been told by a rheumatologist at UCLA. She didn't test
me for Sjogren's or much else, other than to tell me I had osteo symptoms
and signs. I figured my meds also were the ones making my mouth so dry. I
haven't been to the dentist for ages as the last few visits were
horrifying....I had to have root c****s and crowns pulled as they wouldn't
heal. Does that sound familiar?
----- Original Message -----
From: "A Haber" <AHaber5598@aol.com>
Newsgroups: alt.med.cfs
To: <CFS-L@MAELSTROM.STJOHNS.EDU>
Sent: Monday, October 13, 2003 7:50 PM
Subject: Re: Inner mouth sores...and other stuff

duty


mouth

cheryl4329@aol.com (cheryl

In a message dated 10/13/2003 10:51:31 PM Eastern Standard Time,
AHaber5598@aol.com writes:


I constantly have dry mouth from medicines. I wonder if
it helps with that?

Cheryl

cathyb0junk

Hi,

I was going through some old posts and saw this post and wanted to ask
about it. F****ve me for bringing up old stuff. When I first joined
this list I couldn't keep up with the posts but couldn't bring myself to
delete them unread. My illness originally started from an infected
tooth that turned into a chronic sinus infection that turned into
chronic meningitis that turned into CFS. That tooth has a root c****
and doesn't bother me now. However, in the tooth next to it, I have a
root c**** from about 6 years ago and the tooth still hurts somewhat.
Recently it has been hurting more than usual and the gum is slightly
sore. Since I am having chronic sinus infections I am wondering if that
tooth could be spreading infection. Could you tell me more about your
problems with root c****s?

deneb

Cathy,
Yes, root c****s are mentioned in some articles about not healing right and
it seems a large number of us got CFS about the time we were having work
done that's very invasive like that. Also, with ****s that get CFIDS/ME, I
often thought about their wisdom teeth being removed. I've thought that I
might have gotten my CFIDS from someone else (in the outbreak area I was
in.....small town with loads of PWC's)via the dental office. But then again,
others in that same dental office didn't get CFIDS. I don't know.. Although
we know it's viral, perhaps that was something that set off viruses that
would have stayed dormant. I don't know. It's something to consider. Also,
all of my root c****s were done on teeth that had pretty massive amalgam
fillings...mercury and whatever the other ingredient is I can't think of.
Jeesh, and here I was mixing this stuff and cleaning it up with my hands
when I was young and a dental asst. Shows what our memory is like. But I've
been tested for mercury and other metals in my system, and it doesn't show
up (at least on prelim lab tests) as over the limit in my system. But lab
tests that are preliminary are not necessarily good tests for stuff that may
show up. Just a thought. Being a dental asst, surgery asst...etc., I know
how invasive root c****s and impacted wisdom teeth are when we're digging in
that lower jaw bone. Ok,. everyone is going "ewwwww!", but it's true. I
don't know the answer, just thinking of possibilities. Suzq (I don't have
one root c**** that hasn't had to be pulled even a few years after a crown
was put on..they all end up getting an abscess even though there's not
supposed to be blood flow or organic growth after a root c****. ?????)
----- Original Message -----
From: "Cathy" <cathyb0junk@netscape.net>
Newsgroups: alt.med.cfs
To: <CFS-L@MAELSTROM.STJOHNS.EDU>
Sent: Monday, November 24, 2003 1:30 AM
Subject: Root c****s