Re: IV ABX Study for Psychosis

Bart you are in asterisks because I am composing in Word. It took me
until lunch to get here today...I actually had to work at work...go
figure.
**********All in all though, mixed motives or not, at least they're
acting
altruistically in part. Which is more than one can say about many
people*********
I have no problem helping others what so ever even when I don't get
something in return. However, if and when there is an added bonus, I
don't see anything wrong with that. There are very few true win-win
situations in life. I say, if one happens to be so lucky, go for it. I
don't think, however, that a study is always going to be one of those
situations. The problem with studies, IMHO, is that they are always up
for interpretation. And several versions of interpretations, in fact.
I wasn't on the lyme scene long when the last Fallon study was
published. The way I interpreted the results and my opinions vary
enormously from many of the folks over at LN USA.
***********BUT here's the downside: I pay through the nose for the
insurance,
like $800 a month. And don't get it through my employer (used to but
now am self employed but kept the same insurance).*******************
You know what? My insurance was better when I had to kick in towards
the higher premium. I didn't mind so much doing that because I had
great coverage. However, it became so expensive that my job went with
this plan because the paycheck deductions were going to be so high
people were looking for other employment. We are a small corporation,
less than 50 people.
***********I will say though I haven't used it like when I was sickest
(ran up
somewhere near $750 k in medicals*) my prescriptions are expensive
and
I know there will come a time that I will need it again big time
though maybe not from Lyme*****************
The problem is you never DO know. Its not easy. Also, whether you can
get charges lowered based on not having insurance or paying cash or
through 'programs' for the uninsured depends a lot on where you are
and who your doctor is.
*******And it is outrageous that the many things wrong with the health
care
and insurance fields are in no way addressed in any presidential
candidates pie in the sky health care plans. Yeah it is a problem
that
47 million are uninsured but hey if you fixed some of the problems
they could easily be paid for. Quality problems are in no way
addressed--so 47 million getting crappy health care isn't the answer.
There is basically no cost containment whatsoever or rationality in
health care spending. More money doesn't produce better health care
and that is why by almost every measure the US does NOT have the best
health care in the world, it is usually ranked 25-50. And insuring
the
uninsured isn't by any means the whole answer and doesn't address
some
of the actually relatively easily addressed problems--but don't get
me
started on this topic.***********
While this may be true, if the gov't gets involved too deeply, it can
get even worse. Look at Canada. Some people sing Canada's praises...but
people who have chronic diseases, Lyme, autoimmune diseases, even
hashimoto's thyroiditis, they have nothing but problems worse than
ours. With all of the places I have gone online before I got the Lyme
dx when I was in the dx of the month club thanks to local docs, I have
seen some awful things happen to the Canadians. I'm not about to jump
on the Mike Moore bandwagon yet...
********Oh sorry we're not supposed to discuss religion or politics at
the
bar?************
LOL...this isn't LN USA. Say whatever you want. You ever read the
Mexican thread? Hilarious. I'd vote republican and have in the past...
I've also voted democrat when called for...but I tend to vote for a
person not a party. I'm not a fan of anyone running either, but
definitely not a hillary fan.
********So science is very inexact when it comes to medicine or vice
versa but
one would hope they do their best (unfortunately not even close to
true too much of the time).*************
That's because of preconceived ideas going into a study...self-fulfilled
prophesies....along with multiple unscientific interpretations. I
remember when I first found out I had hypothyroidism and reading about
the company that created synthroid getting sued for interpreting the
thyroid replacement studies to make themselves look like they had a
superior replacement they could charge more for...
Its all about WHO is doing the study and WHY they are vested in it.
What do they get out of it. Likely its not altruistic there, either.
*********Misdiagnosi I like that!**********

I like it MUCH more than misdiagnoses! How stupid THAT sounds!
***********I've often wondered if it is all in a name? What if lyme
patients
conceded the field to allen steere and those guys and let them have
"lyme disease" and this was just given another name?*************
Don't get ME started on THIS. Lol
The name gives people validation. Yes, the name should FEEL right and
not weird, and validating. Why do you think all the lymenuts are nuts?
Validation. Why do they run to Bad doctors and shysters or get muscle
testing done by herbalists willing to take their $$? Validation.
Someone told them they believe that they had something real, it had a
real name, not just 'hypochondria'. Validation.
Why do people run to support groups for *hugs* and 'OOOOH, I am SO
SORRY that happened to YOU!!! :)!!!'?? Validation.
I am all about compassion. I am all about being supportive and
understanding and putting myself in another person's shoes. I have run
the gambit of being told it was 'just stress' (OF COURSE I AM
STRESSED, DOC! YOU ARE STRESSING ME OUT!) or depression or anorexia (I
invited THAT doc to go to the Chinese Buffet with me). I have a
wonderful Chiropractor who isn't very alternative and helps me stay
flexible and who was very supportive when the doctors weren't. I went
through the times where I was hardly able to get out of bed, lost
almost everything I had, was sick and scared. But I will never
understand how getting validated by others is more important than
inner validation. I knew I was sick. And once a doctor looked at me
(he had sarcoidosis) and said, "There is something organic wrong here,
not sure what it is"...and had that repeated by a rhumetologist he sent
me to...that was enough for me from professionals that I wasn't just
losing my mind. And with the neuro implications of Lyme, I have to say
that if you don't question at some point if you are losing your mind,
chances are you have already lost it.
Problem is, it DOES cause psych disturbances. People don't necessary
like to fess up to that side of things because it means admitting to
being 'crazy'. They want validation that they aren't crazy. I really
don't mean to be a jerk about this stuff...but been there done that...
probably got a t-shirt and forgot where I put it. It's just I am so
over it by now that while I understand it, I don't have a lot of
patience for it. I TRY to. Pull yourself up by your bootstraps and do
what you have to do to get on with it. If you go into a doc's office
ranting and raving, they WILL think you are nuts and medicate
accordingly. Take a deep breath and speak clearly, decisively, kindly,
and stand up for yourself firmly but gently...especially as a woman who
is more likely to be deemed a hysteric than a man, sad but true, you
have to have a certain attitude with docs when you have chronic
problems or you will not get help.
************But I would suggest calling this something less sci fi
(you like sci
fi movies I remember) than Morgellons disease.
Godzilla meets the morgellons. I just can't help not taking
morgellons
seriously
(well in the case of morgellons I have to say it seems to me that
several fringe practitioners most of whom happen to be "llmds" and
the
same ones who jump on pretty much every bandwagon rolling through
town
without much scrutiny, are believers but it seems to be based on one
guy who looked at the fibers and unlike the other people said it
isn't
fabric. And they seize on that one person, credible or not, and
reject
the others who say yeah it is textile fibers. I don't know but the
delusional parasitosis diagnosis seems to be a good theory. Question
is then does lyme cause delusional parasitosis and I'd say why not it
sure can cause a lot of other psychiatric symptoms--take a look at
lymenut america for example, that whole board is herxing and pretty
much seems like an online insane asylum). .*************
I agree. Morgellons sounds like it is a sea monster.
Sjogren's...pronounced 'show-grins'...is another that makes me squirm.
But Morgellons was pulled from an old disease or parasitic syndrome or
something. I think these people have something...I guess Lyme could
cause a psychotic delusion of parasites. Someone on Lymenut had
floaters once and thought they were seeing bacteria in their eyes and
that they were bug infested. That is a possibility, that it is a
delusion. LE and I were discussing once that I think it is possibly
neurological. I itch. (ha ha ha-me itchy). I have neuropathy in my
right arm and it itches AWFULLY sometimes. And, unconsciously I will
scratch my arm even though the itch isn't real and so the scratching
does nothing. Other times I have numbness or stabbing. I know its not
'real'...just my nerves doing the hootchie-cootchie. I think what may
happen is that people get a neuro itch, scratch till they screw up the
skin really bad, at which time you could easily pull ingrown hairs or
fibers from clothing caught in the sores or even pieces of collagen,
which can be threadlike, from the skin. That's at least my theory on
this. However, I am not so stubborn that I'm not willing to be proven
wrong. Its just my personal experience with neuropathy and
accidentally messing up your skin scratching that brings me to that
conclusion. I do believe these folks itch and I did read the story
about the CSI team looking at the fibers...I'm reserving judgment
because I'm not a doctor and really do not know what it is. BUT
hopefully they will come up with a name that doesn't belong 20
thousand leagues under the sea.
***************Most people don't remember their tick bite, tick bites
are generaly
painless and the tick feeds and falls off. So many don't get or don't
notice the rash. Symptoms can be very vague in the beginning and
often
mistaken for so many other things. You could have gotten a tick
without camping or hiking or gardening just by walking out in your
own
backyard one day.
You got in this line without ever realizing it.*************
My first bite was itchy (there is a pattern here somewhere). Caught it
in a house...not even outdoors! I was just a little kid. I had a
painless one in the 80's. I think I may have had another of which I am
not aware...
I think I spent a lot of time in denial or something. My dog died of
lyme in the early 90's. Well, we had to have him put to sleep because
of the kidney and liver failure. I am pretty sure he also had babesia
even though he was never tested because he'd get better on doxy and
then relapse, poor thing. He ended up having seizures, going
hypothyroid, going blind which was reverse with doxy, he was a mess.
Because of where I grew up, I have known other people with Lyme, as
well. I guess I should have known. However, because I had many times
of pretty good health in between problems until about a decade ago, I
guess I never really thought it was possible to get it and be OK
sometimes. Now I have learned enough that I see it is possible.
However, there are no real studies on people who probably got this in
the 70's and, possibly infected more than once, are still dealing with
symptoms...or dealing with MORE symptoms. Problem is, Steere was right.
It IS, for all intents and purposes, self-limiting in the late, late
stages. However, it does come back eventually.
*************But look at the interesting people you
encounter.************
That's one way to put it! lol
**********Tough thing is that at the high dosages llmds prescribe it
can be even
tougher--dizzy nauseous etc.*************
Mino, because I have stopped and restarted at one point, only makes me
dizzy (more like lightheadedness) the first few days. Then I am OK.
*********Did they before lyme or whatever disease you have?**********

I believe so. I was probably only maybe 3 when they found I was
allergic. From that point on, if I needed an antibiotic I got 10 days
of e-mycin. That was maybe a few times growing up. When I was in my
mid-20's (post lyme, definitely) I got e-mycin for a sinus infection
for the first time in years and that was my first experience with the
GI colitis from abx. I will never be sure which bite caused the Lyme.
The one in 74-75, I had a rash and a welt and it was a deer tick. The
one in the early 80's was a dog tick...big sucker, no rash after that I
know of. There may have been others that I don't know about. There is
some controversy about whether it can be passed via transfusion...I got
blood in 79 following an accident. There is also controversy as to
whether or not it can be passed with fleas...have been bit by them
plenty of times...October at the jersey shore is a flea-for-all. I know
in the late 80's I had an awful flu-like illness that TKO'ed me and
made me miss final exams in school. They never figured out what I had
but it lasted weeks.

I know I test CDC positive...or did a year ago. For what it is worth,
anyway. I agree that if it is something else and the abx will kill it,
no harm no foul. I'd been tested for a whole lot of other infectious
diseases when they found the pulmonary scars. Nothing popped up...still
they didn't test for lyme for several more years.

**********pseudomembranous colitis aka antibiotic associated colitis.
Not good.
(yes a side effect NOT a herx).**********
Yeah. Its nasty. Painful. Long-lasting. Lol. I avoid THAT.
***********Other quinolones too? Remember there are many drugs in most
of these
classes, a bad reaction to one doesn't automatically mean a bad
reaction to all. It certainly means the chances are greater you have
a
bad reaction to others but not always. And like with the
cephalosporins there are multi generations of the quinolones and each
drug is chemically a little different.***************

Well, she wants me to try avelox. I may...but you know, even a 5 day
burst of L-pak gives me vertigo that lasts for like 8 weeks. She
called it a herx...lmao. Its so bad that if I roll over in bed it will
wake me with the spins being so bad!! It makes being 22 and drunken
bedspins after closing the bar look like a cakewalk.

*******Plaquenil might be good it is both antimicrobial AND
antiiflamatory
without doing what most steroids do which is suppress the immune
system.
Have you ever done mepron or malarone?**********
Not yet. We talked about it. She didn't offer it yet. She told me to
start to take some herbal that starts with an A...I have seen Sarah
mention it...artermesian? I'm all about taking one's vitamins and I have
been known to take some minerals and aminos...herbs I don't know. I have
looked into it on and off for years. I have taken things like ginseng
in the past. BUT I know that herbs CAN REALLY have some effect..some
really are medicinal...and I think that's what worries me. They aren't
regulated at all. I have issues with that. I think some are bunk. I
think others are harmless. I think some actually do interact with meds
you might be on...could be dangerous...
I want to make it through this guinea pig crap without killing myself
or making myself worse than I am. Sometimes I'm not sure how to
accomplish that.
LLMD seems to think babesia and bartonella are possibilities, but I
don't think I tested positive. Because I have old pulminary scarring,
**********Old pulmonary scarring from what?
Pleurisy?*************
There is more than one theory. When I had adult chickenpox I didn't
have a chest x-ray done, but I did have some breathing problems. So,
there is a possibility that it is scarring from chickenpox in my
lungs. It appears to look like sarcoidosis. Google images of that. It
looks like little speckles all over the lungs, very diffuse. Either
way, it stopped by the time they found it, nothing actively scarring
me in there right now. Nothing has changed since its discovery.
**********Mild pattern of anemia that would perhaps be called anemia
of chronic
disease is pretty consistent with babesia.***********

Yes, I did read that, and I have had that problem since I was about
12, on and off. The anemia was found the first time at 11 or 12 years
old, I was put on iron. Right around the time I started having
problems with my wrist. It still amazes me to this day that no one
thought it was weird that a 12 year old had arthritis.

**********Dial up? You can't get on the information superhighway in a
horse and
buggy. Come on now these days with the packages cable or dsl or fios
is probaby just as economical.
This is the year 2008. I didn't even think they offered dial up
anymore.
Got to get the husband or bf or whoever to spring for a modern way to
telecommunicate and get online.**************
LOL...single at the moment. Divorced some 8-9 years now. Guys don't much
dig sick chics. Even though I am better than I was, I'm not one of
those people where they say "You don't look sick". I looked very sick
for a while, and while, again, I am much better than I used to be, it
took its toll and aged me.
Where I live, there is no information superhighway. I drive an hour on
back roads to work. I am a NJ girl in the mountains of Amish SW
Pennsylvania. There are hitching posts at the grocery store. We don't
have DSL or cable where I live. We could get satellite if it didn't
cost so much!

*********Well they are doctors and have crash carts and usually have
offices at
or near the hospital. **********

Thanks for the visual...lol
*************Other side effects like the pseudomembranous colitis did
you take your
acidopholous?***********
Yes, I take probiotics when I remember to take them! I keep the
acidopholous at home and the lacto b ones here at work, so I
alternate.
*********For one thing you should have an epipen handy and dye free
benadryl.
You do sound like a tough case though.**********
And possibly my own worst enemy. I HATE medication, and so many of
them make me sick that it is frustrating. I always seem to have to
take something to counteract the bad reactions from something else. It
gets old. I am very interested in actually having something that I
have the ability to get better from (with autoimmune disease you never
get better, so its kind of a relief to me that it could be that I
don't need to get worse if nothing else!). I'm not a good sick person.
I'm not like the gals on lymenut who can rife and sauna and coffee
enema themselves in the course of the day and 'do anything' to get
better. I forget to take pills. I have a job to focus on, I am a
parent. I'm lucky I remember my name. I have to set up a whole routine
in order to make sure I take my meds. Any change messes me up. I am
distracted by bright, shiny objects. The other thing is that I am
'itsy bitsy'. I am rather, er..., petite. I was 98 lbs this morning on
the scale. Lets face it, I'm short. K? Now, being the size of your
average 12 year old, it's a crapshoot when it comes to my dosing. I'm
easily overdosed, which is part of the problem. While that means I am
am absolutely adorable, Docs forget, because I am 37 years old, that
they cannot dose me like they would a 200lb man.
*******Why not opiates? lol ************

Heck, its one of the few things I respond REAL WELL to. Alas, GP
throws me only about 20 fioreset every 2-3 months for migraines. I've
done the gabapentin and the lyrica and elavil and other low does
antidepressants...all the crap they try to manage chronic pain with.
First, a good old fashioned asprin works better than that stuff.
Second, antidepressants really have an opposite effect on me and make
me miserable and crappy. When I'm not really very depressed to begin
with! Possibly, again, due to my weight.

***********LOL well if I really meant it I would let you know.
Remember I'm
forgiving. All in all you seem pretty balanced to me. Reserving final
judgment though. ;-) *****************

I'm alright, all things considered...lol. Actually, in RL, I have people
who like me and consider me to be a good person, believe it or not. Ha
ha ha. I have my quirks for sure. And I appreciate that you are
forgiving. Its good practice to ALWAYS reserve final judgment...no
matter what.


**********Okay but I think you said last time you'd go with itchy?
Trying to
return the favor for you calling me bart instead of cow.***********

Itchy is fine.
.

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