Re: IV ABX Study for Psychosis

On Feb 18, 2:17�pm, itsybitsy...@xxxxxxxxx wrote:
Bart said.............The study design seems too similar to the first
fallon study, almost
designed to fail. I don't blame fallon except that he ought to know
that this is unlikely to work and the results will be interpreted to
mean that iv rocephin isn't the answer. If his first study looked
first at this sort of treatment and then longer treatment durations
it
would have been one thing. Instead treating people inadequately is
simply interpreted as treatment failure. Also the first study which
had reports of enough adverse events is simply being interpreted to
mean that (in llmd terms SHORT) courses of iv rocephin not only don't
cure but are more dangerous than beneficial...........

I would like to know...

What about those of us who are allergic to penn. and cephlosporins?

I'd love to take place in a study...while I don't fit the psychotic
profile so this one's not for me (I've never been on anti-psychotics
and hold a real full time job)...I'd love to be in a study (unless I
had to take some weird experimental stuff).

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.

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

Most often people are required to forego other medications while in a
study.

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

Not only that but many studies are for drug companies and are designed
to gild the lilly in terms of hiding known problems and advancing the
approval of what often turn out to be bad drugs and at that point
drugs without known side effects.

I no longer recommend participating in studies.

Most of the people who participated in the NIH chronic lyme studies
regret it now. Probably those who participated in the first fallon
study regret it. And most of the people rooked into participating in
various studies by our friends from yale, stoneybrook, ny medical
college and many other prestigious institutions regret it too. All
probably had an interest in getting better and helping others. Most
would never do it again.

This study which is an NIH sponsored study is not for a drug company.
It is what is more or less pure research (although note that many such
studies that discover patentable things such as a gene or something do
end up benefitting private institutions and ultimately big pharma--I'm
not a communist and have no problem with the idea of people making
money especially doing a good thing but I can't say that I believe
that any longer about private institutions or individuals involved
much less big pharma).

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.

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.

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

Lots of people are allergic to these meds. I'm sure I'm not the only
one with late term buggers on the brain who has not been offered IV
abx because of allergies.

For one thing there are iv drugs that are NOT penicillins. For another
if necessary it is possible to treat people with allergies in
conjunction with an allergist. This involves desensitizing people to a
drug and careful monitoring and management. It has been done.

However that doesn't mean it needs to be done and that should only be
tried in cases where it is necessary. It is far from obvious that
every Lyme patient NEEDS iv abx. The qualities of drugs available now
in terms of crossing the blood brain barrier and achieving sufficient
cns penetration make IV questionable in many cases. In many ways in my
opinion this is an old issue that lyme patients and some so called
llmds remain inappropriately obsessed about and it causes insurance
coverage problems and makes the llmds targets when they don't need to
be.

There has to be a strong rationale for iv vs oral or im since the drug
is the drug, iv vs oral vs im is about delivery systems and iv is
fraught with risks. If needed, fine, but it is probably not needed in
many cases now that we have abx that do cross the bbb and achieve
sufficient cns penetration and have adequate half lives delivered
orally.

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

I just sit here taking my minocycline day after day...for WHAT?

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.

Have you seen the burrascano video? Worth watching:

The video is on the LDA site along with a few others from a recent
conference.

Lyme Disease Association

http://www.lymediseaseassociation.org/VideoView.html

You must download Real Player. This is a Dr Burrascano lecture about
"bartonella like organisms"

This is interesting. He is certainly out there on this one, but then
again he was out there and mostly right about Lyme:

rtsp://ldarm.webcastcenter.com/lda/lda_burrascano2005.rm


Just
to keep the worst of the symptoms back in check? I'm better (mostly)
than I was last year...and way better than I was a few years ago
before I knew this was what I had...and I know I will never be 100%
and I am OK with that...but just to not relapse and get worse is all I
really want.

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.

And definitely not if you have babesia (at last check donta didn't
think it was a big issue, pretty much everyone else does and that
includes the more conservative non "llmds") and IF burrascano is right
then not bartonella like organisms (BLOs--I don't know why these
things have to sound like an alien abduction and whoever named
morgellons if it is anything other than delusional parasitosis well it
sounds like something from a horror movie and the name itself makes it
hard to take seriously).

Even if you are allergic to penicillin that does NOT mean you are
allergic to various cephalosporins or macrolides and other available
drugs. Don't assume that if you have a penicillin allergy that you are
allergic to all penicillin family drugs. You should see an allergist
and consult with them about what drugs you can take and what you can't
and if something else is needed about possible management through
allergies.

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.

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).

AND...I think you are right about the interpretation. I think...call
me crazy (or psychotic)...he will find people improve while on the IV
and relapse 6 months later. Sounds awfully familiar....

Crazy. Psychotic. ;-)

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).

Yes I am concerned that the results of the study are predictable.

Sharing a few thoughts, consult with a doctor.
.

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