well the first two months were the roughest. I had all the lyme disease
symptoms that I had for over four long years hit me hard all at once.
the symptoms were physical and neurological. Then the symptoms left me
slowly - a little at a time. In the 3rd month I had the same symptoms
hit me but less in severity. Now it is like a cloud has been lifted. I
feel more like my former lyme diseased self than I have ever felt
through out this disease. I tried adding Biaxin to the Flagyl
(following the theory of the cyst and non-cyst form) but I could
not tolerate the combination so I am seeing my doc next week to see
what is next. I am back close to over 80% well - yeah.
I need to go the rest of the way. My worst symptom right now is
fatigue - that is amazing compared to the list I used to have.

I have also considered the side effects of flagyl - the drug itself
has. In the beginning I wondered when every symptom hit me I felt like
I was run over by a truck - but in my desperation I realized I was
familiar with these symptoms - they had been there in the past. It was
hard to take those pills and yes I missed a few days out of sheer
desperation but I had e-mail support from this group telling me that
 as bad as I felt now I would feel that mcuh better later. They had
wisdom from experience and they were right. THANK YOU!

So here I am still taking the flagyl - the horrible symptoms are in the
past leaving me to think I killed some serious spiro's. I feel
if the symptoms were the drug itself they would still be present.

So good luck to all and I wish them the same experience as myself.

Also I am interested in the combinations that have been made with
flagyl since I could not tolerate the biaxin combo. please e-mail me
with your sucess with combinations.

(also has anyone figured out how to kill that bad taste in your mouth?)

Thank you and wishing good health to all.

Lonnie in NJ (lyme/babesia sufferer)

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Craig

Mike

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Before you buy.

I'm wondering if it was maybe the Zith/Flagyl combo that isn't working
or maybe even the Zith is responsible for the high anxiety. I'm taking
meds for the anxiety but I'm kind of stumped about how to proceed from
here and nervous about going back on Flagyl and equally nervous about
quitting since it's helped so much.

Any input would be appreciated.

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Sorry this is pbly not helping much as I am finding it near impossible
to reach conclusions re abx

Nelly (still a Chronic Rickettsia dx as per my tests and a possible Lyme
dx, as per husband's tests, bitten by ticks same time same place)

Lonnie in NJ (lyme/babesia sufferer)

Sent via Deja.com http://www.deja.com/
Before you buy.

I'm wondering if it was maybe the Zith/Flagyl combo that isn't working
or maybe even the Zith is responsible for the high anxiety. I'm taking
meds for the anxiety but I'm kind of stumped about how to proceed from
here and nervous about going back on Flagyl and equally nervous about
quitting since it's helped so much
<<<<<<<

I was on Zith and Doxy for much of the year. I felt like I was getting
better, but then in June I had a bad flare. The main symptom was anxiety.
The flare lasted a week.  I thought perhaps I was not taking a high enough
dosage. The dosage was increased. I had a crazy summer. Then in September I
was hit with another bad flare. The main symptom was anxiety. So my doc
dropped the Doxy and put me on Flagyl. I took Flagyl and Zith for 2 weeks.
Then I quit the Zith. I think it was Martin Atkinson-Bar who suggested that
Flagyl can have a bacteriostatic effect and had been used to treat syphilis.
For 3 months I was on Flagyl alone. I got better. Then at the end of the 3
months I got hit with another bad flare. The main symptoms were coldness and
anxiety. I dropped the Flagyl and switched to Ceftin (500mg, twice a day,
1000mg total). The flare faded away.

Why do these flare ups happen? All we can do is conjecture. Art Doherty has
put forward the theory that bacteriostatic antibiotics such as Doxy perhaps
won't work for someone with late Lyme, if the person's immune system is
compromised. Such antibiotics merely paralyze bacteria, they don't kill
them. They rely on the immune system to remove them. And many people with
late Lyme show evidence of crippled immune response. But then the Zith
should work, yes? It is a bactericide. Why wouldn't it work? I don't know.
You are not supposed to take Amoxicillin when you take Doxy. Art's
interpretation of why is that the Amoxy kills bacteria when they reproduce
but the Doxy paralyzes them and keeps them from reproducing. Thus, if that
theory were accurate, you shouldn't combine a bacteriostatic antibiotic with
a bactericidal antibiotic. But if that theory is true its surprising more
doctors don't mention the fact. And it seems like the theory would apply to
many more antibiotics than just Amoxy and Doxy.

For now, I'm going to try to avoid bacteriostatic antibiotics. I want to see
if I improve more without them. But, in theory, I need to take Flagyl to
treat the cyst form of Lyme. I am not sure what I am going to do about that.
Perhaps I can take it in pulses, and still get some benefit from it. I don't
know. No one knows. I think we are all feeling our way on this.

By the way, the latest flare that hit me faded away even though all I was
taking was Ceftin, and some people would say I am not taking a high enough
dose. Right now I feel pretty good. I've reached a point with this illness
where I feel pretty good except during the flares. The flares are still
savage enough that when they hit I think I am going to go to the Emergency
Room. Why Ceftin would help the flare go away I do not know. I think the
flares are auto-immune in nature, and to the extent that Ceftin comes in and
begins a Herx reaction, it gives the immune system something other else to
do besides attack me. But this is conjecture. I've noticed that nearly any
change in my antibiotic regime seems to help out during the flares. But that
could be interpreted a number of different ways.

Also, for many Lyme patients, {*filter*}antibiotics fail.  Not so much
because the spirochete has built up an immunity but because the orals
have penetrated all the infected areas as deeply as they are able.
What's left and unreachable continues to fester.  When this happens,
switching to the same antibiotic in IV form usually causes improvement
again.  

Unfortunately, there are so many variables to this disease and not just
from person to person but in a single individual! Patterns can be hard
to distinguish espcially when flares can occur regardless of whether you
are on meds or not.  It's complicated, but sooner or later, most chronic
lymies have to resort to IV.  It tends to be what works the best.

Debi

I've often wondered about that. The idea behind IV is to get the highest
possible {*filter*} concentration, yes? But can't you get that by simply taking a
much higher dosage of the orals? What is the limiting factor on the orals?
Why can't one take sufficient quantities that way? If absorption with orals
is only 25% then can't you take 4 times the normal IV dose and thus get 100%
of what's required? I've always wondered why that wasn't possible. I'm
trying to figure out if IVs are as effective as people say or if they've
acquired a mystique that is to some extent undeserved. I've read of people
taking orals and then later still getting sick, but I've also read of people
taking IVs and then later still getting sick. So I'm curious.

Martin Atkins-B has made it clear that IV is never needed with Flagyl. The
absorption rate for {*filter*}Flagyl is, apparently, very high, and so, in his
opinion, IV for Flagyl is pointless. But I suppose for other antibiotics the
absorption rate is so low that IV is necessary. Perhaps there is a falling
off, a diminishing returns? I still can't figure it.

Debi

 Your GI tract
processes things in its own way.  IV of course bypasses all that and a
greater concentration of meds gets into your system... IV's definitely work
better for alot of folk, especially the
neuro-lyme afflicted.
<<<<<<

Yes, that is what people say. I was asking why that is. If absorption is the
issue why can't one compensate for lower absorption of orals by taking a
higher dose? What exactly gets in the way? What is the limiting factor?

Here's a question for people. My doc wants me to take Ceftin and Flagyl. She
wants me to take 1000mg of Ceftin a day, plus 750mg of Flagyl. I can't take
1500mg of Flagyl. It was giving me elevated liver enzymes. Has anyone out
there tried 750mg of Flagyl (a day) for any length of time? It seems to me
like a very low dose. Is there any chance I'll see any benefit from such a
low dose?

A lot of professions practice more is better methodology. Got a
problem...spend more money. Ditto with many MDs.....oh yeah we are
using the latest and most expensive medication.....probably the last
one they heard of from the drug rep.

Knowing the mechanisms involved (of the pathogen and the AB) leads to
better outcomes.

..and then there is the black and white assumptions made with
science. We know everything right now. What about all the things they
forgot. That "Ideas" article certainly bears that out.

As for {*filter*} that are available in {*filter*}and IV such as Doxy or Zith, the
dosages tend to be equivalent.  Again, a drug design thing.......So,
while it is a question of absorption delineating how much antibiotic you
can take for LD it is not necessarily about getting too little to treat
the Lyme but sometimes a question of too much strain on the liver.  Both
aspects need to be taken into consideration.

This goes a long way in explaining why IV's work better than orals.
Higher doses of antibiotics can be used, which is usually necessary for
neuro-lymies.  Penetration is therefore better (more drug to go around)
and its a little easier on the digestive tract!  This isn't to say that
IV's don't affect the liver.....they do!  Just a bit more gradually!  

Hope this info helps.

Debi