Antibiotics

[Guest guest]

In a message dated 99-07-22 22:14:31 EDT, you write:

<< Remember people CAN have an allergic reaction to antibiotics and need to be

very careful. >>

Yep, my husband is very allergic to Penicillin...nearly died the first time

he took it...be careful.

Anjin

[Guest guest]

Well due to the fact that there's an over use of antibiotics, there are now

many antibiotic resistant strains of bacterias out there. This has been

seen time and time again when a child goes to the ped for an infection and

it just " doesn't work anymore! " When it comes to ear infections, we try

garlic oil IN the ear mixed with a little goldenseal, no milk or food

products that cause problems with mucous, and lots and lots of fluids to

help keep mucous thin. Always try a non allopathic method FIRST!

Remember people CAN have an allergic reaction to antibiotics and need to be

very careful.

Remember, when we take antibiotics, it kills the good germs and MAYBE the

bad germs. Perfect set up for a flamming yeast infection. Over use of

antibiotics also weakens the immune system to open it up for other

infections, i.e., secondary infections.

I've seen very, very good results with our clients and with my own family

Nutribiotic. It's an antimicrobal made from grapefruit seeds. It takes care

of those itchies from yeast and infections from colds to sore throats to

even ear infections. Now I'm NOT giving medical advise over the internet!

Just be very careful with antibiotics.

Stepping off soap box now

[Guest guest]

Hi Nelly,

With all of these abx what about problems with yeast infections and such?

Have you had problems with that? If I even look at antibiotics I have yeast

infections.

Judi

Re : exercise/cfs

>From: janel@... (JANEL)

>

>

> Beth wrote:

>>><< Has anyone ever used (or gotten a doctor to prescribe) very low dose

>>>steroids???

>

>then Christie wrote:

>> I have both CFIDS and lupus DX and have been on both meds. I only have

>> continued to get worse - very frustrating!

>

>

>Christie,

>Just a thought: Taking steroids (eventhough some seem to recommend them),

>might be quite detrimental to you in the hypothesis of an infection with

>intracellulars, with Lyme. I know you're in a terrible bind, on the one

hand

>trying to reduce the inflammation from Lupus, (which might be a by-product

>of an infection process anyway), and on the other hand trying to give your

>immune system the best conditions possible to fight hard to get rid of them

>bugs, and that's best done w/out the cortisone.

>Reducing inflammation by using steroids for eg, might make you feel a bit

>better, in the short run, but what if it's suppressing some useful immune

>response at the same time. Some researchers think, (and from what I am

>reading, more seem to go down that path) that some instances of these

>auto-immune diseases might be caused by infective agents (see the very

>interesting article you posted on bacteria and chronic inflammation).

>Having this GI bleeding and stomach intolerance of tetracyclines is a real

>pb. I just received C Jadin article from the Sydney 99 conf. She says if

one

>has pbs with stomach on tetracyclines to use a gastric pump inhibitor (I

>don't know what it is).

>I have just read through some of your posts and I do think your symptoms

>(including the cardio-vascular ones) fit in snugly with these nasty, nasty

>Rickettsiae, and with Lyme too, in fact they seem very close. They are

>supposed to infect the walls of blood vessels and therefore cause vaso

>constriction, which in turn, causes a myriad of symtoms in all parts of

your

>body and when in or near the heart, dreadful and very worrying symptoms

>(which I also have, but after 2 courses of abx they are already improving,

>bad extra-systoles not so frequent, and no more heart-stopping 10+ times a

>night). It also fits in nicely with the Hemex stuff, don't you think?

>Are you interested in reading Jadin's stuff, it's been scanned and faxed

so:

>quality? it's about 10 pages. But obviously her tx protocol (which involves

>7 day courses of various abx, unfortunately involving Doxy and minomycin)

is

>for Rickettsiae not necessarily adequate for Lyme.

>I seem to be almost envangelical re Rickettsia, in fact I've noticed that

>the ones of us who have improved on abx all seem to get this way, maybe bec

>it IS spectacular! (I'm just coming out of my third abx course and coming

>out of the most terrible Herxheimer reaction, though, so not feeling too

>crash hot, right now) Even if these intracellulars are not the WHOLE story,

>they're, AFIC, good candidates for taking at least part of the blame in my

>case.

>

>Hang in there

>

>Nelly

>

>

>---------------------------

[Guest guest]

I've heard that some are on three different

>ABX at once. Could those who are taking ABX please tell

>us what you are taking and how much?

For me now: Bicillin IM once a week and

Flagyl 250mg 2x day for 7days and then 500mg

2xdaily for 4 months

Also taking nystatin mouth swish and diflucan 1x day.

Since starting above IBS is totally gone! I can eat, go out with scouting

around for restrooms - miracle! Need to add acidophillis and digestive

enzymes.

But I am taking a host of other meds too.

I feel very confused about what to try first, and what

>therapies might conflict with each other. Any thoughts?

Yes, find doc who believes in complementary medicine as they are more open

minded. I would also suggest a lyme literate doc who could evaluate you to

at least rule out tick, etc. and if negative, he should be able to refer

you to an open minded doc. Docs who treat lyme have to be careful as they

are sometimes harrassed, but this makes them more empathetic. If you need

a referral for your state, please e-mail me privately.

Christie

>Patti

>--

[Guest guest]

Somish,

I couldn't agree more, I would not have stuck with antibiotics through the

side effects and horrible herxheimer reactions if I hadn't read that the

herxheimer effects are a GOOD sign. Hanging on to that got me through many

rough days.

Barb

<< without reading posts by others ,would not have endured the

horrible herxing . Had to know a possiblity but not gurantee of benefit.

just a thought. somish

>>

[Guest guest]

I found two pieces of information (after a lot of web researching) about the

specific antibiotic (doxycycline) which caused me to relaxed...

- it is prescribed for acne (and thus often is taken for 1+ year...)

- the only side effect listed was after TEN YEARS and the side-effect

was a blackening of the lower lip - which disappeared when it was stopped...

Add in that it is one of the 20 most prescribed drugs in North America ....

and you end up with something that is about as safe as anything that a MD

can prescribed...

Ken

[Guest guest]

Just as a point of interest kutapressin was also developed some 50 years ago as

an acne medication. The observation that a high liver diet mitigated acne lead

to it's development.

LOL

Steve

Lassesen wrote:

> From: " Lassesen " <KenL@...>

>

> I found two pieces of information (after a lot of web researching) about the

> specific antibiotic (doxycycline) which caused me to relaxed...

> - it is prescribed for acne (and thus often is taken for 1+ year...)

> - the only side effect listed was after TEN YEARS and the side-effect

> was a blackening of the lower lip - which disappeared when it was stopped...

>

> Add in that it is one of the 20 most prescribed drugs in North America ....

> and you end up with something that is about as safe as anything that a MD

> can prescribed...

> Ken

>

> > This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

>>> From: " Lassesen " <KenL@...>

>>

>> I found two pieces of information (after a lot of web researching) about

the

>> specific antibiotic (doxycycline) which caused me to relaxed...

>> - it is prescribed for acne (and thus often is taken for 1+ year...)

>> - the only side effect listed was after TEN YEARS and the side-effect

>> was a blackening of the lower lip - which disappeared when it was

stopped...

Hi,

I must be the exception because this drug causes extreme - totally

disabling IBS on top of IBS I already have! And I was given tetracycline

drugs for acne, but had to change. Also, the amount of aspirin you take

can cause bleeding ulcers in some people - as it did me! As much as we

don't always want to (and many times for good reasons), we do need to

consult our medical practicioners about possible side effects of drugs!

take care,

Christie

>>

>> Add in that it is one of the 20 most prescribed drugs in North America ....

>> and you end up with something that is about as safe as anything that a MD

>> can prescribed...

>> Ken

>>

>> > This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

>

>>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

Definitely! This is ALWAYS an assumption with whatever I say (and everyone

on this list)...

----- Original Message -----

From: C.Tab. <tab@...>

we do need to

> consult our medical practicioners about possible side effects of drugs!

[Guest guest]

Hi all,

One thing I've noticed over time is that a million people on this list are

taking antibiotics, but I haven't heard much about the actual benefits. What

degree of improvement do you all feel you've had, and after how much time?

Peggy

[Guest guest]

Well... immediate evidence that is a topic of our house:

Laurie was on antibiotics(2 weeks) for a stomach ulcer in mid-December,

her control pause increased to over 20 seconds. The greatest show of

improvement happened after she stopped them (and the herxing) for several

days. She has been off them for 10 days now (hoping to get on doxycyline

soon) and we have seen her control pause drop to 10 seconds. She is a

'lapsed' 3rd generation Christian Scientist with a heavy anti-medicine bias.

The MD has been using the doxycycline as a 'carrot' to get Laurie to do the

standard preventative tests (mammogram etc) for her age.

I've seen the deterioration in her after the antibiotics stopped

(despite vitamins, whey etc) - and I was not expecting it to happen so

soon..

For myself... I view it as the same as B12 -- I see no apparent effect

AFTER being on it for a while -- although when a stress induced flare

occurred, I did up the dosage of antibiotics for two days and the flare

subsided...

Ken

----- Original Message -----

From: <Peggomatic@...>

> One thing I've noticed over time is that a million people on this list are

> taking antibiotics, but I haven't heard much about the actual benefits.

What

> degree of improvement do you all feel you've had, and after how much time?

>

> Peggy

>

[Guest guest]

Hi,

So far, flagyl has completely eliminated IBS, so to speak....:-)

Long term I have herx's which is expected in lyme, and LLMD told me

strainght out that this was long term therapy - 1 to 2 years with possible

relapses even after that. This seems to be normal in late stage lyme.

Hope this helps!

CHristie

>

>One thing I've noticed over time is that a million people on this list are

>taking antibiotics, but I haven't heard much about the actual benefits. What

>degree of improvement do you all feel you've had, and after how much time?

>

>Peggy

>

>>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

Try asking on CFS_Mycoplasmaegroups

Ken Lassesen

2 @ 2 ft PWC, 2 @ 4ft PWC

2 ft PWC: http://www.folkarts.com/idef/

4 ft PWC: http://corgi.folkarts.com/

Fax: (520) 832-6836 ICQ #: 2122097 (Netmeeting too)

antibiotics

has anyone gottem major improvement (atleast 60%) from antibiotics; and then

sustained this improvement long after STOPPING the abx?

I asked this question a week ago and no one said " yes " ; just want to ask one

more time. thanks~~

[Guest guest]

In a message dated 04/08/2000 1:15:50 PM Central Daylight Time,

2276@... writes:

<< has anyone gottem major improvement (atleast 60%) from antibiotics; and

then

sustained this improvement long after STOPPING the abx?

I asked this question a week ago and no one said " yes " ; just want to ask one

more time. thanks~~

>>

I thought I answered you , but maybe I dreamed it in the fog.

Anyway I was in DR Hyman's study for GWS and was on 2 grams of Doxy IV for 3

weeks and then 4 months of oral doxy at 1.5 grams a day. This was all taken

in one dosage of 10 150 mg caps in the evening. I had marked improvement for

a lil over a year. I recently request study records and told him I was once

again down and he has agreed to treat me again, this time under my private

insurance instead of Gov funded study. I t will be the same protocol as

before. I forgot to mention during the second week of IV therapy he

piggybacked vancomycin for 3 days with the doxy.

Lydia

lilbits65@...

[Guest guest]

I can't answer this question because I haven't even started to take

antibiotics yet. But I do have an optimistic and hopeful guess as to why you

might not have received any answers yet.

As much as I would like to think that I would stick around on this list if I

had recovered from CFS to help along the next generation, I suspect that

after the year or so on antibiotics, then the time waiting to see if I have

to take them again, possibly another course, etc, etc. I would be so sick of

the whole subject and so happy to have a life to get on with that posting to

this list regularly would fall much lower on my list of priorities.

I envision myself working at a job or volunteering somewhere, roller-blading

in a park, bicycling, hiking, anything but sitting at home in front of my

computer after so much time unable to do much else! I expect my conscience

won't allow me to spend ALL of my time roller-blading though, and I'm sure

if I find something that really helps me I will want to stick around and

share it with others for a while. But if that's the case eventually there

will be more people after me, and they can take over...

I've noticed that there are people on this list who are feeling better and

are very generously hanging out with us, answering our questions, helping

along the newbies. I appreciate them very much. I like to think that for

each one of them there are others who have just moved on to other activities

now that they have the energy to pursue them. Also I expect that many people

will find that there is a lot of life-rebuilding to be done once they've

recovered which would understandably keep a person very busy.

Maybe I can ask your question another way, do any of you " old-timers " on

this list know of people that fit 's description, but either aren't

subscribing to this list any longer or never were on it, and so have not

replied? And if you do could you ask them to post us a motivational message

once in a while?

Abra

>From: 2276@...

>Reply-egroups

>onelist

>Subject: antibiotics

>Date: Sat, 8 Apr 2000 14:15:13 EDT

>

>has anyone gottem major improvement (atleast 60%) from antibiotics; and

>then

>sustained this improvement long after STOPPING the abx?

>I asked this question a week ago and no one said " yes " ; just want to ask

>one

>more time. thanks~~

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hello Kids........

I haven't gotten 60% improvement on doxy, I have gotten slow

improvemnet and seems each down is shorter and ups are longer.....

First year on doxy, I had tea with milk and maybe vits too close to taking

abx's.

This is why I have learned to wonder on the Vets on doxy ,abx's studies.

Now with whey I did it again, took them too close, some say no problem but

will space them apart 2 to 3 hrs.

Also some vits have magnes. sp? something in them, be careful of the

additives also.

Keep the Faith

[Guest guest]

PS: I still crash if I am off doxy too long, I like my 2 to 3 week vacations

but eviventually feel the old sysmtoms with being off too long.

[Guest guest]

I think you are asking a good question. So far we have just heard from &

Lydia(I think I might be spelling this name wrong) Lydia went through IV abx and

suffered from infections that

produce obvious symptoms (green you know what -- how is your breakfast). The

real interesting answers to this response will come when we get more folks here

that did not have a clear infection and

were more the hypothetical mycoplasma types. Ken & others will be able to tell

us in a year or so. Maybe other know folks who have had good luck with this

approach. If so it would be nice to get

them to tell us about it. Could we get some recovered types to participate in a

town meeting. Some one earlier wrote (I think is was Abra) that folks who have

recovered would most likely not be

participating on a board like this because it is so time consuming and life get

busy when you are healthy (I would be out on a 50 mile bike ride right now if I

was healthy). Let's get some

recovered types to come and talk to us. It would be nice to see a light at the

end of this tunnel.

Steve

Lassesen wrote:

> Try asking on CFS_Mycoplasmaegroups

>

> Ken Lassesen

> 2 @ 2 ft PWC, 2 @ 4ft PWC

> 2 ft PWC: http://www.folkarts.com/idef/

> 4 ft PWC: http://corgi.folkarts.com/

> Fax: (520) 832-6836 ICQ #: 2122097 (Netmeeting too)

> antibiotics

>

> has anyone gottem major improvement (atleast 60%) from antibiotics; and then

> sustained this improvement long after STOPPING the abx?

> I asked this question a week ago and no one said " yes " ; just want to ask one

> more time. thanks~~

>

> ------------------------------------------------------------------------

> LOW RATE, NO WAIT!

> Get a NextCard Visa, in 30 seconds! Get rates

> as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> 1/2122/2/_/531724/_/955281337/

> ------------------------------------------------------------------------

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

I'm posting because I know there are other people out there who have been

taking antibiotics for a long time. I'm wondering how folks are doing with

the abx? Any increase in infections? Have side effects bothered any of you

enough to make you take a break?

I had been taking antibiotics for about a year. I took doxycycline for about

six months, zithromycin for six weeks along with the doxy, cipro for about a

month and took a month off because my liver ached so bad it felt like it was

going to fall out on the floor. I had been taking Amoxicillin for the past

three months. I stopped taking it due to kidney pain, and within a week had

pneumonia confirmed by xray. My local internist read me the riot act saying

that " playing this game with antibiotics could be very hazardous to your

health. " He said that I was lucky that zithromycin worked to knock out the

pneumonia and that it wasn't resistant. I'm back to baseline CFS now, mostly

housebound, some days pretty much bedbound, though I still have some

coughing. My son also had pneumonia and my daughter has bronchitis. None of

us have ever had pneumonia or bronchitis, just run of the mill sinus

infections. I guess a bad bug got loose in the house. I would finger the

glue used and plastic dust in our kitchen remodel, but my husband and

brother-in-law tented the area with plastic drop sheeting and neither of them

got sick though they didn't wear masks.

Overall the main benefit of taking long term antibiotics has been greatly

reduced pain level. My neuro pain (scalded skin sensation, burning in hands

and feet, sometimes feeling like my muscles are being flailed by a twisting

fork), also my FM type aches, have gone from a 6-8 with ultram, aspirin on a

regular schedule, also Neurontin 3200mg/day, to no pain medication and pain

level 1-3, on a bad day it goes up to a 4. With pneumonia it was about a 6,

and I had the worst non migraine headache of my life. I took Neurontin 400mg

every six hours for three days until the headache subsided, mercifully I

didn't go through a withdrawal period from the Neurontin after the three

days. It took me about three months to taper off Neurontin 3200mg/day. I

attribute the reduction in pain directly to taking antibiotics. I can't

overstate what a difference this has made in my quality of life. Now fatigue

and NMH are my worst problems.

My internist had me go for a revisit the other day and asked me what my plans

were relative to going back on Amoxicillin. I don't know what I'm going to

do. Right now take it day by day and hope that my pain doesn't come back.

I'm looking for feedback re what are people thinking about antibiotics these

days.

Barb

[Guest guest]

I took neurontin for about two years. Prior to starting Neurontin I was

mostly bedbound for two years. After two days on Neurontin I had more energy

and less pain, got out of bed. I was mostly housebound for the two years on

Neurontin, that was an improvement. My energy level hasn't gotten worse

since tapering off Neurontin, still mostly housebound, some days spend most

of the day in bed.

Barb

<< So the ABX did not help with fatigue -- what about neurontin did it help

with fatigue.

Steve

>>

[Guest guest]

So the ABX did not help with fatigue -- what about neurontin did it help with

fatigue.

Steve

[Guest guest]

>>>I'm looking for feedback re what are people thinking about antibiotics

these

days.

>Barb

I've been asking like crazy on other lists about opinions and experiences

with antibiotics. (there's quite a few FMS/CFS lists out there); additionally

reading more books. This seems to be the only list where where some members

see long term abx as a reasonable appraoch for treating CFS/FMS. On every

other list everyone said " it was a wreckless approach " ; " your gambling with

your health " , etc. Again I read stories of temporary improvement; and again

I read stories of horrific long term health consequences. To me it seems the

risks associated with this protocol are severe. Did you all read 's

experience with abx?? They had a terrible impact on her health. My FMS

started when I was 14; and I took excessive abx for ingrown tonails when I

was 13; coincidence??? Maybe I worry too much; maybe I'm just wierd; but

with the risks involved I don't see how anyone with an I.Q greater than a

monkey's could take this treatment route. --

[Guest guest]

Well, I'm doing antibiotics - I have a Masters of Science, worked at Microsoft

for ~ 10 years (with constant very good reviews), scored in the top 50 in

national physics contests, top 10 in national mathematics contests.... your

typical low IQer...

Thus I vote for you being weird ;-|, and a second vote for not learning YET the

openness to ALL IDEAS and approaches that this list encourages and prospers

from...

>> Maybe I worry too much; maybe I'm just wierd;  but

>> with the risks involved I don't see how anyone with an I.Q greater than a

>> monkey's could take this treatment route.  --<BR>

[Guest guest]

to those who responded to my previous question: i'm not taking penicillin.

i'm still curious as to whether or not those taking long-term abx still feel

them to be useful, if anyone has gone OFF of the abx and either relapsed or

sustained improvement, and how long herximer reactions usually last and what

they involve. anyone?

[Guest guest]

Pegomatic,

In answer to your questions: I took doxy for six months, zithromycin for six

weeks while taking doxy. Then I took six weeks off, then took cipro for

about a month, then switched to amoxycillin for about three and a half

months. Stopped amoxycillin and within a week developed pneumonia. Back on

zithromycin for five days. Off everything now for two weeks.

I had excruciating pain for about three years and was on an elaborate

combination and schedule of pain controlling medications. After the

doxy/zithromycin combo I noticed that my pain was much, much improved. I

have not had a pain free day or even part of a day, but have been able to go

off all pain medications. I can't overstate how important this is to me.

While on the doxy/zithro combo I felt very toxic and couldn't decide if it

was a herx reaction or toxicity. I felt like I was being scrubbed from the

inside in all my tissues, it was a unique burning pain, similar sensation to

what you might feel if a stiff hair brush is brushed hard across your skin.

This was all the time all over, on the inside of my whole body. It got to be

intolerable, so I dropped the zithromycin. My pain level has stayed low. On

doxy, zithro and cipro I had a serious pain in my liver that took months to

clear up, and I also took supplements that helped. On amoxycillin my kidneys

ached a whole lot, two days after stopping it my ache stopped but I do have

some tenderness around my kidneys now. I still have a crappy energy level,

mostly housebound. When I had pneumonia a few weeks ago I had FM type muscle

aches and I was worried that my pain was going to come back and stay, but the

five days of zithromycin seemed to turn the tide. One final comment for now,

I was taking large doses of all of the above antibiotics, so that is what I

attribute the liver and kidney pains to. I also had liver pain on and off

before I ever took any medications and supplements, liver tests and scan were

all normal.

Barb

<< to those who responded to my previous question: i'm not taking

penicillin.

i'm still curious as to whether or not those taking long-term abx still feel

them to be useful, if anyone has gone OFF of the abx and either relapsed or

sustained improvement, and how long herximer reactions usually last and what

they involve. anyone?

>>