Re: - long remissions

[Guest guest]

DM

How long do you think you were sick with Bb before starting the

Abx? And do you have an idea of when you were inoculated and

how long after that it took for you to become sick?

You're saying that you didn't actually feel completely better until

after a year off the Abx? I've heard this sort of thing once before.

If that's the case, how does one decide when it's a good time to

stop the abx? Weren't you afraid that you still had a reasonable

reservoir of Bb left; one that would rebound in just a few months?

Thanks,

Matt

> ,

>

> just wanted to give you another data point... I'm currently

having a

> recurrence which started (in retrospect) in Jan '04. Prior to that,

> the last time I was on any antibiotics was about May '97. That

prior

> time, I had meningitis from Bb (yup, poz. CSF elisa & W/B) and

was

> totalled. The month before my latest recurrence I was rock

climbing

> weekly, so it was a real remission. Just starting Abx this week

so,

> had a good 6 years (not counting 1 year getting up to speed

after

> ending the IV abx in '97).

>

> ~DM

>

>

[Guest guest]

Dura:

I will be extremely happy if I manage to make 5 or 6 years

symptom free.

Did you test positive before this round of abx, or was Lyme

presumptive?

Barb

> > I agree with Tony - resolution/remissions/cures should always be

> > considered provisional.

> >

> > Report of a resolution (meaning drugs may be ongoing) of less

than a

> > years duration isnt worth anything to me.

> >

> > I dont do lymenet terribly much - meaning in the last 6 months

Ive

> > spent maybe 60h there, maybe less. After several hours you run

> across

> > people dropping in reporting multi-year full resolution. Not a

lot

> of

> > em, but neither is it a shock when I see one more... I have seen

> maybe

> > 8. And I know of a few others here and there.

[Guest guest]

Tested positive, IgM western blot, standard CDC criteria with

several additional bands, Feb'05 (serum). Was also tested for co-

infections for the first time ever, very low positive on

Babesiosis. B/c of drug allergies, will be treated with Malarone

AFTER a few months of effective Abx.

I'm not sure babesiosis dx is real (low positive on one test, neg on

two others), but am open to treating it on the off-chance it will

help extend the next remission.

Due to veinous access issues and insurance issues, they are trying

oral mino (200 mg/day) and zith (can't remember dosage, will start

in a few weeks) combo. In past, orals didn't do much as I couldn't

tolerate high enough doses (GI complaints) or many types (allergies

to penicillin and cephalosporins), but we're giving it a go. If it

works, great. If it doesn't, I'll probably go onto IV Primaxin

which worked back in '96-97.

Am currently completely annihilated, bedridden, etc (insert add'l

gory details here), but am not selling my rock climbing equipment.

It may be quite a while until I use them again between treatment and

subsequent recovery (confounded by aging), but for now, the

equipment will be yet another carrot on the end of a very long stick.

> > > I agree with Tony - resolution/remissions/cures should always

be

> > > considered provisional.

> > >

> > > Report of a resolution (meaning drugs may be ongoing) of less

> than a

> > > years duration isnt worth anything to me.

> > >

> > > I dont do lymenet terribly much - meaning in the last 6 months

> Ive

> > > spent maybe 60h there, maybe less. After several hours you run

> > across

> > > people dropping in reporting multi-year full resolution. Not a

> lot

> > of

> > > em, but neither is it a shock when I see one more... I have

seen

> > maybe

> > > 8. And I know of a few others here and there.

[Guest guest]

I'll try to answer your questions with a timeline, and yet keep it

reasonably brief. Feel free to ask for further clarification.

Aug '89 - EM rash noted (never heard of Lyme!)

Sept '89 - flu-like illness, 2 weeks

Oct '89 - odd fatigue noted

Nov '89 - flare of asthma, prednisone 1 month

Dec '89 - intractable vomiting, weakness, neuro sx, unable to work

Feb '90 - ER, admitted, meningitis diagnosed, CSF + (blood too) for

Lyme

Apr '90 - treated by Sigal (UMDNJ) for 2 weeks, IV Claforan

felt well after that. ***I was followed from Apr - Dec (9 months) as

part of Sigal's study he was doing at the time. ELISA's/W.B's

turned neg after a few months, both blood and CSF)

Dec '90 - recurrence of same meningitis symptoms

Feb '91 - (new doc! big surprise!) various IV abx, 2 months total

maybe? CSF tests positive again.

Sept '91-start grad school (was tested in '91, '92, neg)

Apr '93 - severe cardiac sx, local hosp workup, no other tests than

Bb elisa & wb (IgM) are positive again (blood)

Apr '93 - IV vano, primaxin (sequentially) few months total

(required low doses of ADT prednisone to tolerate)

Sept '93 - resume grad school

Sept '95 - start faculty position

Nov '96 - on leave, meningitis symptoms, blood IgM W/B positive,

also SUNY-SB study (interesting study by Croyle et al looking at

people with immune sys compromises between infection and treatment

(my prednisone, organ transplant patients, and HIV+ folks), immune

complexes also positive, treated with IV Primaxin for a few months

(interrupted with car accident and necessary surgery). maybe 3

months total? ended May '97

tested in 2001 (maybe another time too, can't recall) - neg.

Jan '04 - illness, cardiac primarily, neuro kicks in 9 mos. later

Feb '05 - + W/B IgM (blood)

So, as you can perhaps discern, I had a few breaks from uber-bad

health that lasted longer than 1 year, but not as long as the one

in '97. We did try a few oral meds here and there, but my gut &

asthma just don't tolerate them very well.

When on these IV abx, I just seem to get worse and worse (which

given how ill I am when I start is astounding to everyone). We stop

the Abx after 2-3 months when I just can't take it any more. Then,

it takes from a few months (when I was younger!) to the '97 time

when it took a bit more than a year for me to recover some body

strength and stamina, and from any effects of the meningitis (both

times I had to relearn to walk and the first time I had to relearn

to read - that stuff takes a bit of time!).

Sometimes, I also wonder if our definitions of " well " are a factor.

As long as I can walk, think (at the PhD level!), and fend for

myself in ADLs, even if I am not working full time, that's well in

my book. Of course, the rock climbing I was doing in 2003 is

no " loose " definition of well. I've seen posters on various fora

refer to themselves as very ill in the same paragraph that they

desribe doing a 5 mile charity walk-a-thon! I'm not here to judge,

just to note that what one considers " well " may also be a factor...

> > ,

> >

> > just wanted to give you another data point... I'm currently

> having a

> > recurrence which started (in retrospect) in Jan '04. Prior to

that,

> > the last time I was on any antibiotics was about May '97. That

> prior

> > time, I had meningitis from Bb (yup, poz. CSF elisa & W/B) and

> was

> > totalled. The month before my latest recurrence I was rock

> climbing

> > weekly, so it was a real remission. Just starting Abx this week

> so,

> > had a good 6 years (not counting 1 year getting up to speed

> after

> > ending the IV abx in '97).

> >

> > ~DM

> >

> >

[Guest guest]

Don't sell the equipment.

I've had 3 (lyme flare- or replase- or whatever you want to call it)

over a 27 year period prior to getting the proper treatment where I

was totally disabled (couldn't walk without help during one).. and I

just put my horses on vactation... didn't sell anything.

Is your Doc familiar with using HCQ (Hydroxychloroquine) to alkalize

the cell compartment (not sure if you were on the board when we

discussed this). I have a few good recent papers on it if you're

interested.

What's your DOc say about your case being a documented case of

chronic Lyme...???

Or does he think you were re-infected?

What state or country are you in, if you don't mind me asking.

Thanks,

Barb

> > > > I agree with Tony - resolution/remissions/cures should always

> be

> > > > considered provisional.

> > > >

> > > > Report of a resolution (meaning drugs may be ongoing) of less

> > than a

> > > > years duration isnt worth anything to me.

> > > >

> > > > I dont do lymenet terribly much - meaning in the last 6

months

> > Ive

> > > > spent maybe 60h there, maybe less. After several hours you

run

> > > across

> > > > people dropping in reporting multi-year full resolution. Not

a

> > lot

> > > of

> > > > em, but neither is it a shock when I see one more... I have

> seen

> > > maybe

> > > > 8. And I know of a few others here and there.

[Guest guest]

I was infected when I lived in NJ ('89, see response to another

curious poster), am currently in MA.

Am being treated by my PCP who is working with Dr. Liegner in NY.

Liegner was my doc from '90 until I moved here in '95 although he

also was a bit of a cheerleader for my PCP during the '96-97 'bout

and did the testing for me then.

Way back when, Liegner & I discussed plaquenil (=HCQ, no?), and for

whatever reason (I don't recall) we didn't pursue it (may have been

some eye stuff I was having at the time, retinal specialist & tests

showed optic neuropathy and evidence of vasculitis). I suspect if I

spoke to Liegner now & maybe my PCP as well, they MIGHT be open to

it, but I suspect they want to see how I do just getting onto the

mino and the zith first. If I manage to do both, that will be THE

FIRST time EVER I've ever tolerated a combo.

So, being I'm only up to mino 75 mg/day (started this last thursday)

and need to get to 200 and then add the zith, i'm not inclined (for

tolerence and allergy reasons) to add a third variable to the

experiment yet. However, I am open to it as a suggestion and would

welcome references particularly (if avail) how HCQ relates to mino

and zith.

As for being a documented recurrent Lyme case, because of my history

of steroids between infection (EM rash seen by local doc in box) and

treatment of known meningitis (CSF/blood tested by one of the most

conservative docs out there, Sigal) even some of the most

conservative types are open to this being a " chronic " case. Coyle

at SUNY-SB had me out there in '96 as part of a pilot study in which

they were looking at cases of " chronic " lyme to see if there were

commonalities relative to folks who recovered quickly and/or didn't

have much in the way of symptoms (at that point, to date the

commonalities were delayed treatment combined with steroids, organ

transplant recipient, or HIV+ status all in the absence of

treatment). I have a copy of her letter to Liegner from that visit

which states that my situation seemed to set up an el primo bed for

recurring problems: delayed treatment, steroids prior to treatment,

and subsequent florid meningitis. Does this info answer your query?

> > > > > I agree with Tony - resolution/remissions/cures should

always

> > be

> > > > > considered provisional.

> > > > >

> > > > > Report of a resolution (meaning drugs may be ongoing) of

less

> > > than a

> > > > > years duration isnt worth anything to me.

> > > > >

> > > > > I dont do lymenet terribly much - meaning in the last 6

> months

> > > Ive

> > > > > spent maybe 60h there, maybe less. After several hours you

> run

> > > > across

> > > > > people dropping in reporting multi-year full resolution.

Not

> a

> > > lot

> > > > of

> > > > > em, but neither is it a shock when I see one more... I

have

> > seen

> > > > maybe

> > > > > 8. And I know of a few others here and there.

[Guest guest]

Yes thanks.

Your early story mirrors a Lyme friend of mine (lives only 40 minutes

from me).

She was infected either on Long Island, or the Cape in the late 80's

bulls eye rash and positive Lyme tests at Stony Brook. Under-treated

at that time, and subsequently had numerous (health) problems over

the next 10 years, but didn't put it together as possible Lyme till

2001. Tested + in 2002 and agressive abx pushed her into seizures

which set her back a year.. Unable to work, depression, seizure Meds,

Dartmouth Hitchcock and Mt Siani Neuro's arguing over her ever

changing MRIs (chronic Lyme, another Lyme infection or rare MS).

She lost part of her visual field,(brain related) and it hasn't all

come back.

She and I started therapy at the same time- with identical

symptoms, especially the eye problems and neuro pain - I was

reluctant to start abx agressively, because I thought I might have a

stroke if I had too big a die-off in my head. (I had constant head

aches when I started abx- of at least 6 year duration and anterior

and posterior uveitis of 12 yr duration, with partial visual field

loss in one eye (too many immune cells in the vitreous) and that

corrected itself over time.

... And now 3 years later (and leaving out alot of details) of almost

solid treatment, my friend is finally driving again, and working

part time.. and is weaning off orals (she had a PICC for a long time)

and getting her life back.

I have yet another Lyme friend (a Vet- not ) also pushed into

seizures with agressive abx therapy. After 4 years of therapy for

the seizures and Lyme, she also is working again, and is off abx.

You may be making the correct decision to ramp up abx if you think

you have colonies in the menenges...

Good luck and keep us posted.

Barb

> > > > > > I agree with Tony - resolution/remissions/cures should

> always

> > > be

> > > > > > considered provisional.

> > > > > >

> > > > > > Report of a resolution (meaning drugs may be ongoing) of

> less

> > > > than a

> > > > > > years duration isnt worth anything to me.

> > > > > >

> > > > > > I dont do lymenet terribly much - meaning in the last 6

> > months

> > > > Ive

> > > > > > spent maybe 60h there, maybe less. After several hours

you

> > run

> > > > > across

> > > > > > people dropping in reporting multi-year full resolution.

> Not

> > a

> > > > lot

> > > > > of

> > > > > > em, but neither is it a shock when I see one more... I

> have

> > > seen

> > > > > maybe

> > > > > > 8. And I know of a few others here and there.

[Guest guest]

Barb

where these people on erythromycin or tetracycline therapy? I think

those 2 groups of drugs really mess with the nervous system part of

this infection.

tony-

-- In infections , " Barb Peck "

<egroups1bp@y...> wrote:

> Yes thanks.

> Your early story mirrors a Lyme friend of mine (lives only 40

minutes

> from me).

>

> She was infected either on Long Island, or the Cape in the late

80's

> bulls eye rash and positive Lyme tests at Stony Brook. Under-

treated

> at that time, and subsequently had numerous (health) problems over

> the next 10 years, but didn't put it together as possible Lyme

till

> 2001. Tested + in 2002 and agressive abx pushed her into seizures

> which set her back a year.. Unable to work, depression, seizure

Meds,

> Dartmouth Hitchcock and Mt Siani Neuro's arguing over her ever

> changing MRIs (chronic Lyme, another Lyme infection or rare MS).

> She lost part of her visual field,(brain related) and it hasn't

all

> come back.

> She and I started therapy at the same time- with identical

> symptoms, especially the eye problems and neuro pain - I was

> reluctant to start abx agressively, because I thought I might have

a

> stroke if I had too big a die-off in my head. (I had constant head

> aches when I started abx- of at least 6 year duration and anterior

> and posterior uveitis of 12 yr duration, with partial visual field

> loss in one eye (too many immune cells in the vitreous) and that

> corrected itself over time.

>

> .. And now 3 years later (and leaving out alot of details) of

almost

> solid treatment, my friend is finally driving again, and working

> part time.. and is weaning off orals (she had a PICC for a long

time)

> and getting her life back.

>

> I have yet another Lyme friend (a Vet- not ) also pushed into

> seizures with agressive abx therapy. After 4 years of therapy for

> the seizures and Lyme, she also is working again, and is off abx.

>

> You may be making the correct decision to ramp up abx if you think

> you have colonies in the menenges...

>

> Good luck and keep us posted.

> Barb

>

>

>

> > > > > > > I agree with Tony - resolution/remissions/cures should

> > always

> > > > be

> > > > > > > considered provisional.

> > > > > > >

> > > > > > > Report of a resolution (meaning drugs may be ongoing)

of

> > less

> > > > > than a

> > > > > > > years duration isnt worth anything to me.

> > > > > > >

> > > > > > > I dont do lymenet terribly much - meaning in the last

6

> > > months

> > > > > Ive

> > > > > > > spent maybe 60h there, maybe less. After several hours

> you

> > > run

> > > > > > across

> > > > > > > people dropping in reporting multi-year full

resolution.

> > Not

> > > a

> > > > > lot

> > > > > > of

> > > > > > > em, but neither is it a shock when I see one more... I

> > have

> > > > seen

> > > > > > maybe

> > > > > > > 8. And I know of a few others here and there.