*POLL* What antibiotics are people on?
spiro...@my-deja.com
taking, and what has worked. Please include, drug(s) name, the dose,
and for how long, IV or oral etc.
I am on Zithromax (IV) 500 mg and Mepron 2 teaspoons per day.
Thank You
Sent via Deja.com http://www.deja.com/
Before you buy.
Sarah
everything possible (IV/Oral/IM) under the sun something so basic as pen v k
is working better than anything else at the moment.. i even herxed!
<spiro...@my-deja.com> wrote in message
news:8nnpj0$ho8$1...@nnrp1.deja.com...
Kara Kyriaka Tyson
Flagyl 500 mg a day
* Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping. Smart is Beautiful
Frank de Groot
Half a year 1500 mg Flagyl, 1500 mg Probenecid, 6000 mg
Amoxicillin with roughly a 50% duty-cycle.
From almost dead I became almost cured.
Franciscus
<spiro...@my-deja.com> schreef in berichtnieuws
8nnpj0$ho8$1...@nnrp1.deja.com...
sarah...@my-deja.com
p.s. for people who are searching for a new med regime- one person in
our support group has gotten great gains from Bactrim, which is very,
very inexpensive.
brite...@hotmail.com
-from a walker to a quality of life I can accept!
Rubyantonia
days ago., So I've been on 200 mg. Doxy and 1,000mg Biaxin for about a
week. However, the Biaxin made whatever I ate taste like metal and I
couldn't swallow even water, so I'm off that for 3 days. Am also
taking vitamins and yogurt. I wishI could say I feel better, but for
some reason, I feel worse in most symptoms except the insomnia and
headaches. I'm quite worried as he said I'd have to stay on abx the
rest of my life, but at least he didn't want to " explore my psyche" as
the Stony Brook MD's did. Ruby
Sture
18 months later, 2grams rocephin for 14 days and then one
month of doxy 200mg twice a day. Better not well.
Now on day 17 of 90 totals on tinidazole.
Now feel like dancing and go fishing again! Hope it stays
this way. Read about the tinidazole on
http://mab.webprovider.com
Sture
Mariah's Mommie
oral abx, I'm on Biaxin 1000mg. a day for 3months at this time.
Empty~Nest~Cape~Cod
Helen~Jim~Mariah
A.J.
>I am gathering as much info as possible as to what people with Lyme are
>taking, and what has worked. Please include, drug(s) name, the dose,
>and for how long, IV or oral etc.
>I am on Zithromax (IV) 500 mg and Mepron 2 teaspoons per day.
>
>Thank You
I am on tinidazole, 500 mgs three times a day, for a little more than
three weeks now. I have not improved but for the first time I am
clearly having herxes. Regular antibiotics never did anything for me,
no herxes at all, so I am now hopeful about the usefulness of the
tini.
Amy in CT
Jet
4 month later 12 weeks of IV Doxycycline 200gr twice daily
6 months later Colloidal Silver
Now, 1 year after stopping the IV the folllowing is the plan:
2 weeks 500 mg flagyl and 1000 mg amoxiciline
followed by 2 weeks 1000mg flagyl and 1000 mg amoxiciline
followed by 3 months of 1500 mg flagyl and 1000 mg amoxicilin
supported by Colloidal silver and Chloroxid.
I am on Flagyl for a week now and feel already lots better . The fog has
lifted and I sleep better( I am not so tired when I wake up however I do
have nightmares). my back stays very painful. I am very hopefull.
Henriette
"A.J." <live...@snet.net> wrote in message
news:DTylOTzKJzg6Q+...@4ax.com...
> On Sun, 20 Aug 2000 05:16:26 GMT, spiro...@my-deja.com wrote:
>
> >I am gathering as much info as possible as to what people with Lyme are
> >taking, and what has worked. Please include, drug(s) name, the dose,
> >and for how long, IV or oral etc.
> >I am on Zithromax (IV) 500 mg and Mepron 2 teaspoons per day.
> >
> >Thank You
>
DAni K-C
"The greatest pleasure in life is doing what people say you cannot do."
~Eleanor Roosevelt
"And if this should be my final night, let the stars shine brightest upon that
which I have loved most..."
Ellen Lubarsky
I don't know if it is a good idea to be posting our treatments so openly
in an atmosphere where medical boards are going after docs for
overtreating us.
Copeland Cole
little considering I weigh 225 pounds and have had this for 6-7 years.
Copeland Cole
brite...@hotmail.com
since we've not only give the medication but the dose itself. But I'll
also have to admit that I was glad it was an easy question .... can
only answer a few that I see.
Let me be perfectly clear. I receive all of my lyme treatments and
antibiotics from the alien mother ship that beams me up on a regular
basis. If I don't go willingly, they zap me with their radar zap
gun. -Referrals available upon request.
Ruth
> Let me be perfectly clear. I receive all of my lyme treatments and
> antibiotics from the alien mother ship that beams me up on a regular
> basis. If I don't go willingly, they zap me with their radar zap
> gun. -Referrals available upon request.
Can I come with you next time they float by?
Sarah
Than and only then would it be a bad thing. (in my opinion)
~Sarah
http://come.to/sayra
Ellen Lubarsky <ell...@webtv.net> wrote in message
news:6877-39A...@storefull-154.iap.bryant.webtv.net...
brite...@hotmail.com
>
> Can I come with you next time they float by?
Sure thing Ruth... just make sure to bring your dark sunglasses for
that bright light and... um.. don't wear any green. It's really tacky
when it doesn't match up well. ô¿ô
Mariah's Mommie
:(**O**(**O*:(*::O::(:)::(:*O*(*O**)*O**)*O**)**O
*)*O**)*0* ) It means " MOTHER OF THE
HELEN "BRIDE
Empty~Nest~Cape~Cod
Helen~Jim~Mariah
brite...@hotmail.com
HPM...@webtv.net (Mariah's Mommie) wrote:
> I too wish to go. Just call me--------!!!!!!!!!!!!!!!!!!
> :(**O**(**O*:(*::O::(:)::(:*O*(*O**)*O**)*O**)**O
> *)*O**)*0* ) It means " MOTHER OF THE
> HELEN "BRIDE
... I guess that means you would get to ride on the MOTHER SHIP
right????
I think we are on to something here. We've already been diagnosed in
the crazy category so we might as well enjoy our true selves!
fayew...@my-deja.com
8 months of homemade colloidal silver
1 & 1/2 months of Transfer Factor 560
I, too, agree that if we don't mention who our doctors are, how can it
hurt? Or is there a way they can figure it out? I don't know, I'm
computr illerate. On the other hand, I think we have a responsibility
to other Lyme sufferers to share anything that has helped us. I would
never say, "Do what I do", but I figure each of us has the right to the
information and then the right to decide what we do or do not want to do
on our own behalf.
I have had Lyme for 20 yrs and am finally pain free in muscles, joints,
bones,etc. However I still have bad headaches nearly daily. The
minocycline helped a lot with inflamation which my blood work proved.
But I've felt lousy for years. In Dec. 99 I began making my own CS (I
know how some feel about cs,but it has helped me tremendously). It was
the last week of Dec. I got worse before I began getting better, which
I expected. By the end of March 2000 I began to feel a little better,
and I continued improving painwise until in June I became totally pain
free (not counting the headaches of course).
In July I started on the TF560. Studies have shown that it takes around
6 mos to see a BIG difference, but I'm already beginning to feel a
little more energy. Some people have even gotten rid of the awful
headaches. I hope and pray that I'll be one of them.
I think we're close to a cure for this hateful disease.
Be well,
Faye
In article <IwHp5.1076$V67....@newshog.newsread.com>,
A.J.
>Agree w/Ellen.
>
>This thread is fodder for our newsgroup trolls from NIAID/FDA? or CDC who
>monitor and harass this group, with their many axes to grind about antibiotic
>overuse, antibiotic resistance, etc., in relation to their concept of
>Nonexistent Chronic Lyme Disease, Post-Lyme Syndrome, etc.
>
>Why give them any medical information at all?
The problem is that this newsgroup exists in part to share medical
information. I know I would probably not be on the treatment that I am
now, the one that is giving me some actual hope, if I hadn't read
about it here. I fully support the no-doctors-name rules but I don't
think the risks of sharing treatment strategies outweigh the possible
benefits. We are all nervous about this situation but I don't think we
can afford to allow ourselves to be totally governed by fear.
Information is power, not only for the bad guys but for us as well.
Amy in CT
Lee
6 months 300mg doxycycline......minimal response, lots of herxing
Biaxin combo....kidney pain....slight improvement...lots of herxing
4.5 Gm Amoxicillin 3 months.....more herxes...moderate improvement...more
herxing
Flagyl + zith... 1 week.....nose, face and upper spinal column felt like they
were
exploding, tongue became coated, smell like burning plastic in my nose=FEAR and
made me turn to alternatives.
Home made Colloidal silver 3 months.....slight herxing....marked improvement
Amoxicillin 4.5/day plus 4 days of flagyl 1000mg/day each month.....working
again and close to 95% functional, but minor flares of activity/herx? about
once/month still. Occasional breaks from abx with use of Olive Leaf Extract.
Tincture of time along with vigorous antibiotics seems to do the trick for
many. I believe that Improvement is possible for all. Cure seems more
difficult. If more doctors knew enough to diagnose clinically and be brave
enough to treat aggressively right at the outset, maybe this newsgroup would not
exist. And I think that it is good for us to post on what we are doing from
time to time, particularly for those who think short term treatment is the
answer for all. It isn't. Too many have been helped by long term aggressive
antibiotics for it to be a fluke. If we never herxed it might be more difficult
to tell if infection persisted, but heck, a good herx is gold standard as far as
I'm concerned.
Lee in CA
ttewor
tetracyclin 4 weeks no help doxie 4 weeks no help long term bioxin 8
months some help swithched over to amoxicilan and probencid 4 months no
help suprax 6 months not bad but again one step farward two back back
to bioxin for another few months still no improvment or little then to
zithromax 500 mills 3 months dr gets mad at this point stating to get
heat to end this case from the state or someone brings me up to 600
mills zithroand 15 mills flagly and keflex to get into the sinusitis at
the same time whoa what a herx could drive a man mad easy but after
the herx ended and was taken off the keflex i started to show cognitive
improvment but still not a cure i,m now on rocephen 2 grams 6 days on
one off long term i have 4 months worth of rocephen and it has helped
with alot of the cronic sever pains but i still need pain meds to get
through the day but its the best treatment i have found one draw back
is i was off it for two weeks and reverted quickly back on now so we
well see i do find that the suplaments beta glucans help and also
colloidal mineral suplaments to and as they say take lots of zanex to
get through the hard days to
Kidsmom
and 750mg time release Flagyl for eight months.It is working
really well.
Added Mepron/Zith. for Babesia four months ago. My son is
now walking most of the time and ready to start school. He
has been in a wheel chair and out of school for TWO years!
Frank de Groot
convulsions, a full body rash, extreme tachycardia, a numb left
cheek, kidney- & heart pain etc, I remained relatively calm. I
told them I had a history of a tickbite, that it was Lyme, that I
needed antibiotics, preferably i.v.
As soon as I told them that, they disconnected me from the ECG
apparatus, put me in a dark room and kept me there until the
morning. The next morning I was more dead than alive. I had
fought against dying that night, all night. Some student of
psychiatry politely kicked me out of the hospital,. I begged him
to reconsider his judgement of 'panic disorder/manic obsessive
hypochindiac delusions', but to no avail. My disease was allowed
to progress without any treatment for another 3 weeks, with me in
the emergency room, at night, many times over and over again.
When Lyme is diagnosed & treated earlier, surely those awful
things like severe brain damage, paralysis etc. will not occur.
It is very sad to read that people's IQ drops by 80 points
because of Lyme, people get destroyed, not only by the disease,
but mainly because of the lack of will to treat.
Franciscus
Lee <le...@earthlink.net> schreef in berichtnieuws
39A848CE...@earthlink.net...
Frank de Groot
That's what the Steerian insurance co's want! That Lyme is hushed
up, that the general public will not have the possibility to find
out the truth, that nobody can tell their doctor: 'Look, this is
a good treatment, I want that as well!' They want us to shudder
fearfully in a corner, they don't want opposition. We need to
reverse the situation. We need that those killer-quacks have to
watch every step. We need to utilize Internet mass-media to
expose them. We need to take advantage of this new era with cheap
electronic communication. It is very easy to mass-email people.
It is very easy to start a website. It is very easy to get the
truth out to almost anybody now, almost for free. Without a
fight, without even casualties on our side, we'll never win the
war.
Franciscus
A.J. <live...@snet.net> schreef in berichtnieuws
NieoOfQQZrJnut...@4ax.com...
Sarah*)
http://www.angelfire.com/punk/lymedisease/Mmemorial.html
Kathleen
>
> >Agree w/Ellen.
> >
> >This thread is fodder for our newsgroup trolls from NIAID/FDA? or CDC who
> >monitor and harass this group, with their many axes to grind about antibiotic
> >overuse, antibiotic resistance, etc., in relation to their concept of
> >Nonexistent Chronic Lyme Disease, Post-Lyme Syndrome, etc.
> >
> >Why give them any medical information at all?
>
> The problem is that this newsgroup exists in part to share medical
> information. I know I would probably not be on the treatment that I am
> now, the one that is giving me some actual hope, if I hadn't read
> about it here. I fully support the no-doctors-name rules but I don't
> think the risks of sharing treatment strategies outweigh the possible
> benefits. We are all nervous about this situation but I don't think we
> can afford to allow ourselves to be totally governed by fear.
> Information is power, not only for the bad guys but for us as well.
>
> Amy in CT
Here's fodder for the NIH/CDC Trolls:
After 5 years of being undiagnosed
(being female does not help):
3.5 years of orals did nothing.
5 months of IV got me 100% better
I had auto-pilot, 100% of former
mental faculties and more energy than
I knew what to do with. Everything
got done without my even having to
give any of it any conscious thought.
I was flying around here, like I used to.
Relapsed.
Return of the Wicked Partial
Brain stuff, continuously deteriorating
neuro stuff. Arms and legs + by EMG for
neuropathy without nerve root impingement
by MRI of lumbar and cervical region
(means Lyme Neuropathy and not mechanical
nerve root impingement).
Numb spots all over. My eyes go in
two different directions and I keep
having to increase the prisms.
Got rid of the Chronic Fatigue At Rest, for good.
Tired, Yeah, Sleepy-tired, Yeah. Sleep problems
and personality changes, Yeah. Fatigue upon
exertion, Yeah.
But not that GodAwful Chronic Fatigue
that you feel in your muscles at rest
that feels like the flu and
makes you want to kill yourself
to escape the misery of it.
Hear THAT Ed?
5 mnonths of IV got rid of THAT KIND
OF CHRONIC FATIGUE.
It is a Human Rights Abuse to deny treatment
that alleviates symptoms.
So kiss my ass, Ed.
You're wrong and I'm right.
And your people (I shouldn't flatter
you with that term) keep proving I
am right:
TITLE: Localization of Borrelia burgdorferi in the nervous
system and other organs in a
nonhuman primate model of lyme disease.
Cadavid D; O'Neill T; Schaefer H; Pachner AR
Department of Neuroscience, University of Medicine and
Dentistry of New
Jersey-New Jersey Medical School, Newark 07103, USA.
ab Invest 2000 Jul;80(7):1043-54
Lyme borreliosis is caused by infection with the
spirochete Borrelia burgdorferi. Nonhuman primates
inoculated with the N40 strain of B. burgdorferi develop
infection of multiple tissues, including the central
(CNS) and peripheral nervous system. In immunocompetent
nonhuman primates, spirochetes are present in low
numbers in tissues. For this reason, it has been
difficult to study their localization
and changes in expression of surface proteins.
To further investigate this, we inoculated four
immunosuppressed adult Macaca mulatta with 1 million
spirochetes of the N40 strain of B. burgdorferi,
and compared them with three infected
immunocompetent animals and two uninfected controls.
The brain, spinal cord, peripheral nerves, skeletal
muscle, heart, and bladder were obtained at necropsy 4
months later. The spirochetal tissue load was first
studied by polymerase chain reaction (PCR)-ELISA
of the outer surface protein A (ospA) gene.
Immunohistochemistry was used to study the localization
and numbers of spirochetes in tissues and the expression
of spirochetal proteins and to characterize the
inflammatory response. Hematoxylin and eosin and
trichrome stains were used to study inflammation and
tissue injury. The results showed that the number of
spirochetes was significantly higher in immunosuppressed
animals. B. burgdorferi in the CNS localized to the
leptomeninges, nerve roots, and dorsal root ganglia, but
not to the parenchyma. Outside of the CNS, B. burgdorferi
localized to endoneurium and to connective tissues of
peripheral nerves, skeletal muscle, heart,
aorta, and bladder. Although ospA, ospB, ospC, and
flagellin were present at the time of inoculation,
only flagellin was expressed by spirochetes in tissues 4 months
later. Significant inflammation occurred only in the
heart, and only immunosuppressed animals had cardiac
fiber degeneration and necrosis. Plasma cells were
abundant in inflammatory foci of steroid-treated animals.
****We concluded that B. burgdorferi has a tropism for
the meninges in the CNS and for connective
tissues elsewhere in the body.******
TITLE: In vivo activities of ceftriaxone and vancomycin
against Borrelia spp. in the mouse brain and other sites.
AUTHORS: Kazragis RJ; Dever LL; Jorgensen JH; ***Barbour AG***
Department of Medicine (Infectious Diseases), University of
Texas Health Science Center at San Antonio 78284, USA.
Antimicrob Agents Chemother 1996 Nov;40(11):2632-6
"The failure of vancomycin
in eradicating established infections in immunodeficient
mice was associated with the persistence of viable
spirochetes in the brain during antibiotic treatment."
Meanwhile, since no one believed me
that I was sick, I assumed I had CF/IDS
but had no real diagnosis. Called
the CF/IDS people and asked if it was
okay if I had kids and they said the
anecdotal evidence was that it was okay.
Consequently, I have at least two kids
with congenital Lyme. The third, maybe.
He is the least symptomatic, but has some
serological evidence that he, too, is infected.
So I say to the Lyme people:
Hang in there for a cure,
Take care of your vascular
health because you want to maintain a clear
MRI of the brain for as long as you can.
**YOU CAN get rid of the Chronic Fatigue At Rest
even after many years, with long term IV treatment.**
It's a Human Rights Abuse to deny you this.
Kathleen
Ryan
functional on that dose. I have weaned myself from it several times, but
cannot go more than six months without relapse. If I begin taking it as soon
as I begin to feel poorly, I can usually maintain, but if I wait until I get
sicker, (trying to not get back on it) it takes some time to return to
health. I also had a course of biaxin and plaquenil, which boiled the
bejeesus out of me, but did give me my first return to mental clarity since
the disease disabled me.
<spiro...@my-deja.com> wrote in message
news:8nnpj0$ho8$1...@nnrp1.deja.com...
> I am gathering as much info as possible as to what people with Lyme are
> taking, and what has worked. Please include, drug(s) name, the dose,
> and for how long, IV or oral etc.
> I am on Zithromax (IV) 500 mg and Mepron 2 teaspoons per day.
>
> Thank You
>
>
Mariah's Mommie
line and have for quite some time, and I know this was discussed before,
but I regretfully lost
the info----what do you use to keep your line dry when you shower???
Sorry for the run on sentence. I know I do it---but it is a bad habit of
mine.
~ ~ Helen ~ ~
Empty~Nest~Cape~Cod
Helen~Jim~Mariah
brite...@hotmail.com
>what do you use to keep your line dry when you shower???
(lyme language is the only one I can read Helen!)
I used to use Reynolds plastic wrap colors (color helped me see if I
missed any places)... several pieces wrapped snuggly and then a hair
dryer applied would turn it to shrink wrap (no rubber bands, plastic
bags or tape needed). It was a colorful experience!
Now, I have one of the "mid arm protectors" made from Brown Medical.
http://www.brownmed.com or 1-800-843-4395 . They are available for $
15.00 plus $ 4.95 and if you order before 10 am you receive it the next
day express shipping.
You can swim with it according to their printed information. It's blue
and like a soft plastic but I can't tell you what it's made out of. It
has a hole at each end. One large for the size of the upper arm and a
smaller one for the wrist or mid arm area. You pull it on, squeeze out
the air and go. When finished it comes off as easy. No leaks, no
hassle, no nothing.
Recently I was stupidly trying to dry mine a bit thinking maybe I
could "shrink" the lower slit a bit to make it tighter.. well the hair
dryer cooked it and it tore. I called them, they not only sent me
another one right away but they took an extra day and cut a special one
that was tighter around my wrist area. Now that's SERVICE!
I miss all my "colorful showers" but it's nice to have life simpler!
Jonathan R. Strong
> hurt? Or is there a way they can figure it out? I don't know, I'm
> computr illerate. On the other hand, I think we have a responsibility
> to other Lyme sufferers to share anything that has helped us. I would
> never say, "Do what I do", but I figure each of us has the right to the
> information and then the right to decide what we do or do not want to do
> on our own behalf.
Sharing information can certainly help, and it's a pity that we have to
even wonder if somebody is peering over our shoulders.
But the people who would stop our doctors and deny us treatment have
some incredibly strong incentives to do what they do. There are
hundreds of millions of dollars at stake for the insurance companies, a
huge amount of money to be made from patent royalties on proteins used
in test kits and vaccines, and careers and personal reputations that might
be destroyed if the past few years of publications and court testimony
against Lyme disease doctors and patients were proven to be
disingenuous - not to mention the enormous and financially crippling
lawsuits that would follow.
The incentives for the "bad guys" in this are huge - far bigger, in fact,
than the incentives that have motivated countless cases of theft, swindling,
corruption, conspiracy and murder.
The point here is *not* that you should be paranoid, and *not* that
your freedom of speech should be curtailed...
But it would be incredibly naive of us to assume, for instance, that an
insurance company wouldn't find it worthwhile to attempt to discredit
doctors who promote the perspective that chronic Lyme disease exists
and might require $100,000 to $200,000 in treatment. Consider that
the CDC acknowledges their own surveillance figures to be extremely
narrowly defined for Lyme disease, and that they still reported something
like 17,000 cases last year that *did* fit their model. I believe that many
sources suggest that the real number is at least 10 times greater than that.
If the real number was 170,000 in just one year, then in just seven years
there will be more than 1 million Lyme disease victims to deal with. If
it were to become acknowledged that they require $100,000 to
$200,000 of treatment, the cost to the insurance industry would be
phenomenal - between $100 billion and $200 billion. On top of that,
there would be countless lawsuits reminiscent of the tobacco lawsuits
that are going on right now.
Recent exposes have shown that insurance companies have sometimes
done whatever is necessary to protect their profits, including fraud at
the expense of patients' health and well-being. With the kind of stakes
we're looking at here, we'd be foolish indeed to think that it couldn't
happen again.
In the light of this, the cost of monitoring a newsgroup like this and
drawing meaningful data from it about doctors' diagnostic and
treatment protocols is absolutely trivial. In a simple scenario, imagine:
-- at one time, people are encouraged to share the way they were
diagnosed by their LLMD's.
-- at another time, people are encouraged to share their treatment
experiences.
-- at yet another time, people may solicit advice about which
doctors to see - either on the newsgroup or via private email.
One or two moderately bright software developers could easily
pull all of the relevant newsgroup posts into a database and
cross-correlate diagnoses, treatment and doctors' name, creating
both a "hit list" and even some basic "evidence" that could be
used by a governing body like the NY OPMC with which to
start an investigation of an LLMD and possibly a punitive action.
I have no evidence of this, but I can see why insurance companies
might have sufficient motivation to do something like this in order
to protect hundreds of billions of dollars.
I don't want to encourage paranoia, and I do hope that people
will continue to benefit from information shared on this newsgroup.
But being blissfully naive about the possible uses of personal
information posted here potentially leaves us all at risk.
- Jon