Re: IV ABX Study for Psychosis

At one time I would have encouraged people to participate in studies.
Sounds like a great altruistic selfless thing to do.--that at the same
time might benefit others and personkind in general.

Well, I was kinda thinking...helping other people while possibly
getting free meds. lol

I have a $1200 in network and a $1500 Out of network deductible
yearly. My insurance will pick up 100% of generic drugs, but I pay
full price until I reach my deductible (meds count toward the in
network). I still pay 20% of labs after reaching deductible. My LLMD
is out of network. My GP is in network. You do the math of how much I
have to pay before I get covered.

It sucks but my job pays for it so....


However, given the "needs of science" study parameters and
requirements are very restrictive.

As it should be, in all fairness...however with a disease like this,
where we are all lab rats its hard to say what is fair and what's not.

Also there is typically a placebo control group--you might go without
necessary medication for the length of the study.

I am sure this happens. I do know, however, of a fellow in an RA study
who was allowed to continue to take his mexotrexate (sp?) during the
placebo part of the study. Which indicated to him he was on placebo.
Which seems pointless to me.


In essence Lyme patients are all in a study though it is uncontrolled.
The so called llmds really are shooting in the dark, trial and error
generally and specifically with every patient.

Agreed...see what I said above about being a lab rat.


With the discovery of new coinfections some of which might or might
not be clinically significant the trial and error nature of all of
this is even more true.

I have felt for a long time, even before I knew the final dx was Lyme,
that I have something that they don't know about yet. Thus, for years,
even with various autoimmune misdiagnosi, I called it "the whatever it
is".


So my advice for every penny you're paying for it is stick to the
experiment that you've joined involuntarily.

LOL...I don't remember getting on the lab rat line. Its like getting
on the line for "trains"....

Whatever is lost in the gi tract can often be made up for in terms of
higher dosage (athough more is not always better).

ARGH. I was on high dose tetracycline for a month and yacked my guts
up every morning and had to give up coffee in the interim. It did help
me, but at the time I was afraid it was doing more damage than
anything!

There are probably many drugs that you could try instead of or in
addition to mino or any of the cyclines. I wonder what coinfections
have been considered in your case and or treated for? If you're
treating with donta you're probably only gonna get mino but that sure
won';t cure babesia and if bartonella is an issue and burrascano is
right that it is not classic bartonella henselae then mino isn't gonna
do the trick either.

OK..Penns and cephlos give me a rash, as does zithromax. Biaxin and E-
Mycin give me some pseudo-'something or another' colitis. BAD
intestinal reaction. Levaquin gives me severe vertigo as a lovely
neuro side effect. LLMD wanted me to add avelox to the mino AND
plaquenil. I'm actually afraid to add the avelox with how badly I do
on levaquin. PLaquenil I will add in next week if I can get my
protonix up to a level where I can control the acid without stomach
cramps. I did plaq for about 5 months a few years ago when I had a
primary sjogren's syndrome dx. They give it for that and lupus a lot.
It didn't help me, so I went off, but I am willing to try again in
conjunction with an antibiotic.

Doxy made me too photo sensitive. I would get burnt up just taking the
dog out. I had to wear a hat and gloves and long sleeves all summer.
When I finally got off that, I did the tetracycline. Rough but I know
if had benefit. Mino I tollerate well.

LLMD seems to think babesia and bartonella are possibilities, but I
don't think I tested positive. Because I have old pulminary scarring,
that could have been babesia or mycoplasm. I did have "anemia of
chronic disease", not only was I anemic, but my FE and ferritin were
dangerously low a few years back. I corrected that with Niferex. I
have not been anemic since, but haven't had the FE and ferritin
checked in a while.

So far, as far as tollerating abx, mino has been the best I have done.
And NO, its not a herx when I am falling down and not sleeping on
levaquin...its adverse reaction...lol. I even fight my GP who wants to
give me levaquin for every sinus infection.

I'll make sure I watch the video when I get a chance. I'm not allowed
to stream video at work because it taxes our servers too much, and
have dial up at home...BUT I am sure I will get a chance to see it.

I think the cyclines are great for every lyme patient because they
will cover and ought to be enough for many tickborne diseases whether
diagnosed or not and that includes ehrlichia, rmsf, and a wide variety
of other things. But mino alone for Lyme that is chronic and
refractory to treatment? I don't know that is ever going to do the
trick.

Me neither. Maybe an allergist IS necessary. An allergist will not
have a lot in their arsenal for adverse events, tho, which, IMHO, are
worse than the allergy. However, with the allerigies to this stuff,
they are afraid that next time it could be worse and I could start to
swell...my LLMD is not quite sure what to do with me to be honest.
But, she is trying. She had Lyme which is why she treats, and she
isn't in her own practice, she's not making a ton if money off her
patients. That makes me feel better. Opiates would make me feel even
better BUT you cannot have everything I guess...lol.

And many many drugs other than rocephin are available iv or im or both
in addition to orally. IF you need iv that is and on that topic I am
far from convinced. Even if needed the question of duration is a real
one. Maybe iv is needed to start but to my observation the sooner
people get off iv and on to follow up orals the better they seem to
do. And I am not convinced that the success rate for iv long term is
any better than orals long term.

I'm not yet convinced of much of anything! To be honest, I don't know
that I would even want an IV. If I had one, I certainly couldn't have
one where I live right now...a bad event would kill me before rescue
even came. I live in the middle of nowhere.


Unfortunately many patients keep fighting this battle and it might be
one that isn't even necessary and too many doctors including the llmds
fight this battle too. To my observation the biggest issue is a
coinfection with babesia (and maybe IF burrascano is right the blos,
NOT just lyme--although lyme alone can be a real problem for sure).

Well, the LLMD keeps pushing this with me...I've been skeptical tho. I
could say, yeah, I have definate symptoms, but I haven't been nit in a
really really long time. I could believe BB lives this long in the
brain and tissue...but Babs? Any idea how long they can live before it
would kill you or burn out?

Crazy. Psychotic.   ;-)

He he he. I asked for that, I guess.


Just kidding (you SAID to call you that itchy--we did settle on itchy
right? I noticed that you've been calling me bart and I appreciate
that--cow just sounds so bovine).

Just don't call me late for dinner, Bart. You started a trend, even
Mini called me itchy on LNE.
Its catching on!

.

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