AntIbiotics

[Guest guest]

Gail,

I have been hospitalized twice due to antibiotics related problems. And I

wasn't even on for so long. I know people to have had their gallbladder

removed, DEVELOP an allergy to the antibiotic (a problem if they get an

infection that needs that antibiotic), liver problems, parts of colon removed.

However, more often there's the candida problem. I have known quite a number of

people who were treated for many years who's problems were really no longer

Lyme, but rather candida. Few like to admit this. The antibiotics turned out

to be causing more harm than helping anything.

In general, I would be much more comfortable with prolonged bicillin use, which

has a lot of precedent, as opposed to long term IV with cephalosporin, which

seems to often be the culprit to the more serious complications.

;o)

Cheryl

http://www.aero-vision.com/~cheryl/lymes.html

Sites:

http://www.sky.net/~dporter/abxgall.htm

http://www.uhrad.com/ctarc/ct024.htm

http://www.healthsci.tufts.edu/apua/apua.html

http://er.jhsph.edu/ERwork/er-anti.htm

http://www.better-health.com/antibiot.html

[Guest guest]

HI JL,

I am currently on Cipro, because of another problem, but it seems to be

keeping my lyme in check. There are so many strains, you never know what

will work with what.

Hugs,

Connie, MI

[Guest guest]

i am on cipro now , but not because my doc thinks it will help the lyme,

rather I have developed a kidney infection and they put me on cipro for

that. I believe that when my cultures come back they may change my meds

based on what they find under the scope. My doc seems to think that the

doxycycline has 'cured' the lyme and that this 'piggyback infection' is a

fluke, a coincidence. I think that the spirochete got tired of attacking one

part of my body and opportunistically grabbed another organ to haunt, my

kidney. So I think it is the same fight, different battle. We shall

see..........

[Lyme-aid] Antibiotics

>From: ne Kieffer <theocean@...>

>

>Hello All,

>

>Just a quick question...I never hear Cipro being talked about as being

>helpful for Lyme Disease. Is this because it's not a strong enough

>antibiotic to kill off Lyme or because it is totally in the wrong class

>of antibiotic to be used?? Or are some people using it? Thank you, JL

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

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

[Guest guest]

Hi All,

I feel that until they come up with a cure, let us keep our abx until we

are symptom free they can go dance in the basement. I can't function wihout

my abx, I would be depending on society for everything. I would not have a

life, unable to have my grandchildren over for more than an hour and not die

as soon as they leave. I do not think we are hypchrondiacs for abx, but

again!!!!!!this morning on the sundayhealth show, she said again 58 million

prescriptions are written in this country for people who do not need them.

BS BS BS. I'll bet the people that said that take them when they want,

Sorry guys, didn't mean to get on my soap box tonit,

Hugs.,

Connie, MI

[Guest guest]

Hi Lea, I'm not a Dr. but I would guess just from experience that if you

took a strong dose of antibiotics like they give for other things the body

or mind would never be able to handle the herx. Yes group????????

SKippy

rheumatic Antibiotics

>From: Lea Tanner <cocka2@...>

>

>Hello Eveyone - The last time I saw my rheumy here in

>Denver (he's following me here because Dr. Franco put me on

>Mtx and I need blood work done every 2 weeks - he doesn't go

>along with the AP - but he's curious) we had a short

>discussion on AP. He asked me a question I was unable to

>answer. He said: " I don't understand why antibiotics would

>take so long to act. When a patient has a sore throat or

>other illness caused my mycoplasma we give a strong dose of

>antibiotics over a short period of time and it's gone. "

>

>Can anyone give me a good response or point me to the right

>chapter/page in The Road Back so that I can talk

>intelligently to him about this?

>

>Thanks!

>Lea

>

>

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

[Guest guest]

Hi Lea,

The way I understand it, you have to use bacteriostatic antibiotics like

the tetracyclines (which work by hindering reproduction of the microbes),

rather than bacteriocidal antibiotics like the penicillins (which attack the

bacterial cell walls) because these microbes don't have proper cell walls,

being somewhere in between a bacteria and a virus in structure. It takes

longer this way as the antibiotics don't actually kill the microbes, just

help keep down their numbers so your immune system has a fighting chance to

eradicate them. Also, Dr. Brown characterized the rheumatic diseases as a

bacterial allergy, where the inflammation results from the body's reaction

to antigens put out by the microbes. The body sets up a barrier of

inflammation around the organisms in trying to isolate the offender, which

is hard to penetrate. That's why we are supposed to take some kind of

anti-inflammatory, to lessen this barrier so the antibiotics can get to the

microbes to block their reproduction. He found that low doses over a long

time worked better, as if too high a dose was given, the microbes put out a

lot of the antigen and created too much inflammation, both slowing down the

penetration of the antibiotics, and creating a lot of swelling and pain for

the patient.

This is just my interpretation of what I read in The Road Back, and in

other articles on Dr. Nicolson's site ( www.immed.org ). Hopefully, if I've

made any glaring errors, someone who knows better will come along and

correct me.

Long-term use of antibiotics is not unknown in other conditions outside

this treatment. Long-term use of tetracyclines is a common treatment for

acne, and long-term use of doxycycline is now being prescribed for

osteoarthritis as it has been found to inhibit cartilege destruction.

Another good reason to take it! Good luck convincing your rheumy!

Regards, Liz G

[Guest guest]

Hi I'm my husband is the one with PA, but I have RA and

have been on antibiotics for a year and they are working for me. Why

don't you try rheumaticonelist that's the antibiotic support group,

ask your question there. I know there are people with PA on

antibiotics, my husband is still working on a diagnoses, but I have him

on antibiotics.

Moderator's note: This message does not mean that sharing of medication is

taking place. Remember to talk with your doctor about any form of treatment you

persue.

[Guest guest]

Dear ,

I have been on MTx for about 6months as well and have had little results. I

can't report any side effects. The only relief I've had is that I can get

out of bed in the morning without praying to God I will be able to pick up my

daughter without cringing. Other than that I still have as much pain through

the day as ever. At this point I'm thinking of going off the med and trying

to get pregnant. I have much relief when I'm pregnant. Also since being on

MTx my period had been terrible and very painful so to be done with that for

9 months will be like heaven. Well have a great time in Disney and let us

know how it was wheeling around cause that will be me soon.

Take care and safe trip

Gioia

[Guest guest]

In a message dated 1/5/00 8:49:58 AM Eastern Standard Time,

kenchand@... writes:

<< Antibiotics that must be delivered IV tend to be those chemicals (or

chemicals with carrier agents) that cannot be delivered therapeudically any

other way. >>

sorry this statement really is not true....Penicillin can be

administered...intravenously...or intra-muscularly.....or orally....

often the condition of the patient has a hand in determining a method of

administration.....

the antibiotics ARE formulated differently specific to the route of

administration.....

for example...iv penicillin is a powder that is reconstituted with certain

allowed fluids....and given in an iv solution that will not counteract the

antibiotic....and the fluids are blanced to be isotonic...

some IV meds are only available IV, because they were designed for use in the

more seriously ill patient who cannot take oral meds......so they were

developed iv, and are not available orally...till there is a MARKET for the

drug.....

Zithromax is available orally...never caused me gastric distress..

..but intravenously it supposedly has a higher rate of blood-brain barrier

crossing.

....but it is very caustic to give iv...but to avoid it, it is given into

larger veins and more diluted than others iv meds...Bernadette

[Guest guest]

I've been saying the same thing ... that is, if we can get Willie to put his

name on some of these things, we may have credibility in the US. If he

colaborated with Brorson and Brorson (sp?), we would have a breakthrough in

recognizing the cyst form and long-term issues. Anyone know how to get in

touch??? Irene

[Guest guest]

Hi,

My name is Jules, I live north of Boston, grew up in Fairfield County, CT.

I'm new to this list, and this subject title seemed an appropriate place for

me to jump in. I was recently (finally!) diagnosed with Lyme by an

infectious disease specialist here in Boston (can we mention names here?). I

suspect I have had it for around 10 years, perhaps longer. I had been

conversing with Marta via e-mail, when she told me of this list.

I just started taking 500mg tetracycline (Sumycin) 3X a day for chronic Lyme.

I am interested in finding out what to expect from this treatment, as I've

not seen mention of it on the internet, the sci.med NG, nor the AOL Lyme

message board.

My doctor has written on this treatment (http://x-l.net/Lyme/donta97.htm),

but so far I have not seen any mention of Sumycin. Is it the same as

doxycycline and minocycline? Those are the only 2 drugs in the tetra family

I have read about in the treatment of Lyme. (yes, I did ask my doc about it,

but his e-mailed answer was kind of vague, he referred me to his paper on the

issue.)

I would really love to hear anyone else's experience on this treatment,

anecdotal or not, Good or bad. Preferably good- I'd like some hope!

(wouldn't we all...?) If anyone shares this doctor with me, I'd also like to

hear about how your treatments are going, whether you are using this

tetracycline method, or his other one. According to him, this will be a " 1-2

yr cycle of treatments, then we'll go from there. " You can e-mail me

privately if you think we have the same doctor.

Also, I have read about people " herxing. " Is it possible to have this

reaction less than 24 hours after beginning the antibiotics? After the 2nd

dose, I *thought* I was feeling worse, but decided it was probably my

imagination. But by 2 hours after the 3rd dose of the day, I couldn't get up

from the couch! My hands and fingers go numb, then tingle, then are fine-

then it starts all over again. I couldn't sleep last night because the pain

in my knees, back, neck and shoulders was excruciating.

This is really bad, as I have a 9-month-old baby (he will be getting

tested,too- as will my husband) & it's getting so hard to care for him. I

also work from home.

Last month, I put my hockey gear into storage. I have gone from being a

female captain of a men's hockey team, to a shut-in who prays every day that

her baby will begin walking- because she just can't carry him anymore. I

have spent years feeling like I was nuts, feeling like a hypochondriac,

because the pain I had one day was replaced by a different pain in a

different body part, the next.

I lost friends, my physical activity...I don't feel good about myself

anymore. I can't remember what it was like to feel healthy, attractive. I

can't remember what it is like to look forward to going out somewhere,

because for the longest time, I haven't.

My husband has been great all along. He knew I was in pain, he believed that

*something* was physically wrong with me- he never once accused me of making

it up. I love him for that, when I read about how so many people's lives and

relationships have been destroyed by this disease.

I am so sorry all of you are fighting this disease.

As I type this, I am doing a kind of " dance " with my legs, because it hurts

to keep my feet flat on the floor, hurts to cross my legs, hurts to prop my

feet against the side of the desk...

I'm looking forward to " meeting " all of you, and hearing your experiences &

sharing support.

-Jules

[Guest guest]

Most of the antibiotics that are administered IV have a chemical makeup that

requires that they be put directly into the bloodstream for them to be

effective and/or safe.

A similar thing can be said of oral antibiotics -- the chemicals must be

absorbed via the digestive tract for them to be effective and/or safe.

There are many chemicals that have antibiotic properties. Much of the

difficilty in designing antibiotic medication is finding a way to deliver a

therapeudic level of the chemical where it is needed without harming the

patient at the least possible cost. Oral is cheap, IV is expensive.

Antibiotics that must be delivered IV tend to be those chemicals (or

chemicals with carrier agents) that cannot be delivered therapeudically any

other way.

Snorting ground-up oral antibiotics most likely will not deliver a

therapeudic dose of the chemical and may be harmful. Since it is available

orally, a therapeudic dose of the antibiotic _can_ be delivered orally.

Even if you can get a therapeudic dose intra-nasally, you will not be

getting a dose of the specific chemical in the IV antibiotic that kills the

bug.

I would not recommend it.

Ken

[Lyme-aid] Antibiotics

I'm sure everyone is angry that doctors refuse to prescribe long term IV

antibiotics. It is also infuriating that the insurance companies will not

pay for the treatment. Well, this may sound obscure, but why don't lyme

patients crush the pills up and snort them? The point of taking the

antibiotics through IV would be to get the medicine directly to the brain,

so

what better way to get it into the brain than to snort it!

LInda

[Guest guest]

To All

I believe our biggest hope for the IV's

returning is to get someone other than

Dr. who is in the same camp to

get the study Dr. was involved

in and wrote about, reproduced asap.

It is the only way that we can help get

the doctor's licenses back who have already

lost same, and most probably others who will

be sought out and have the same happen to

them. This is all about money.

The folks who make big bucks treating other

illnesses instead of Lyme, the insurance

companies, and the self insured employer

companies who are also getting rich off of

high premiums and letting their plan

administrator deny treatments. It's a mess

of who all is making money off of keeping

us sick. The govt. does not necessarily want

all the people with Lyme to know they have

Lyme, if so, too many new claims for SSA

disability would cause plans for the " extra "

SSA money being used elsewhere to have to be

used for it's intended purpose.

It's a nest of vipers to be sure, but the only

way to fix it is to get that test reproduced

but not by Dr. , as the naysayers

would just deny the test if he were the one

to reproduce it anyway. Someone else with

name and impeccable reputation needs to do

the test or head up the group that reproduces

the study. Would Willy Burgdefor be someone

who could do this if he had the money?

Why not go to Roche and other pharmaceutical

companies and ask them to underwrite the study?

The companies that make the abx that works with

Lyme Disease. It's in their best interests to

fund the replication of the original study due

to the abx we use, but also, it would open the

doors to seek other better abx or a cure.

Am I crazy, or is this a doable plan?

Wishing us all health and freedom from pain,

both physical and emotional -

Ken Chandler wrote:

>

> Most of the antibiotics that are administered IV have a chemical makeup that

> requires that they be put directly into the bloodstream for them to be

> effective and/or safe.

>

>

[Guest guest]

Jules.....my heart breaks for you! (I wonder how much more my heart can

break!) I have been to see Dr. Donta for a second opinion. My LLMD follows

Dr. Burrascano's protocol, but Dr. Donta agreed that it is still a guessing

game at this point in the treatment of lyme and did not disagree with my Dr.

I have 2 lyme friends who have recently started on Dr. D's protocol but I

think they both are on Biaxin and Plaquenil. My LLMD has the highest regard

for Dr. Donta.....and says he was not always an advocate of lyme pts. and

says he has come around for some reason. I don't think you are going to find

much better at this point and are lucky to have him.

My best to you

Happy

[Guest guest]

In a message dated 01/05/2000 7:35:54 PM Eastern Standard Time,

HapsQuilt@... writes:

<< My LLMD follows

Dr. Burrascano's protocol, but Dr. Donta agreed that it is still a guessing

game at this point in the treatment of lyme and did not disagree with my Dr.

>>

You know- that is one of the reasons I really like Dr. D.- He doesn't state

that " this is the way things are- this is what happens.. " He is quick to

admit that there is so much we don't know! I think that says a lot for him

as a medical professional, to be able to tell a patient " I don't know. "

<< I have 2 lyme friends who have recently started on Dr. D's protocol but I

think they both are on Biaxin and Plaquenil. >>

Yes, that was the other option he offered me for medication. But he listed

the tetracycline first, and said " this is very effective, but a bit rough; it

also tends to make people gain weight " and went on to say that the Biaxin &

Plaquenil was a bit easier " to start with. " Being the way I am, I just

said, " Give me the 'rough' one- I'm jumping in feet first, I don't expect it

to be easy. " And now I suppose it's better that I only have to buy 1

prescription, instead of 2<G>

<<My LLMD has the highest regard

for Dr. Donta.....and says he was not always an advocate of lyme pts. and

says he has come around for some reason. I don't think you are going to find

much better at this point and are lucky to have him. >>

That's interesting! Any idea what his stance was to begin with?

Thanks for your response, Happy!

-Jules

[Guest guest]

For Jules,

You are not alone... we are all with you and have experienced similar

situations. I was diagnosed in June, probably had it for 8-10 years. My

husband and son (11 yrs) was also diagnosed in July. My first doxy pill went

in and I vomited (projectile) within 1 hr. Thank goodness I had a wonderful

doctor who warned me that I would get worse for 3-4 weeks before I would get

better. Just bear with it, don't give up. It also seems to get worse at

different times in your menstrual cycle. Tracking your symptoms and feelings

sometimes helps. I have a chart that I've just started to use.

Hang in there, you will come out of the worst of it. I keep trying to talk

to people who have gotten better, it gives me hope. Irene

[Guest guest]

jules,.....while i can not comment on ur abx treatment ...i want u to know u

have found the right place ....to me the ONLY PLACE ON THE INTERNET FOR

PEOPLE WITH LYME.......i to was an active, atractive( still am right

girls...lol) person who at the age of 38 found myself on total

disability....losing my carreer and a business that i owned.....plus the

stress of waiting with no money for 2 years while ss did their thing....al

this with a wife and 2 kids.....fun huh.....all we can do is tuff it out make

the best of each day......i have found that i can no longer mourn what i have

lost( i did for a long time and still find myself doing it on occasion) but

to take this as a new begininneing.....the only real activities i get

involved with are lyme related......i live and breath lyme i have to.....as i

suffer each and every day from it somedays severely others not so bad......(

severs right now due to weather changes...arghhhhhh)

however lyme aid has been my savoir.......just when u feel u cant go one

maybe its in ur head.......someone relates a story here that brings u back to

earth.....we truly support each other......THIS IS MY FAMILY HERE GUESS

WHAT SOME OF THEM I HAVE MET ONCE ( AT THE NYC RALLY...WHICH WAS NEAT) AND

SOME I HAVE NEVER MET.....BUT I LOVE THEM ALL....THEY HAVE TRULY SAVED MY

LIFE AND I HAVE LEARNED FROM THEM ....please become an active part of our

group.....ur experiance has much to offer us.....as ours does u....

lastly.....not all cases of lyme get a severe as others.....we are all

differant .....when u do feel normal ....savor it.....as some times it is

fleeting and other times it is not....

do u have a relative or friend who could help u with ur baby?.....use

them!!!!

stress only makes worse.......welcome again

Reid

[Guest guest]

In a message dated 01/06/2000 4:36:48 PM Eastern Standard Time,

RenieR1@... writes:

<< Tracking your symptoms and feelings

sometimes helps. I have a chart that I've just started to use. >>

That's a great idea, I'll start one.

<<Hang in there, you will come out of the worst of it. I keep trying to talk

to people who have gotten better, it gives me hope. Irene >>

The only people I know of who have gotten better are people my mom knows &

told me about. One of them has been symptom-free for a couple years. That

gives me hope. Has anyone on this list regained the majority of their health

yet?

-Jules

[Guest guest]

In a message dated 01/06/2000 6:27:55 PM Eastern Standard Time,

RMcmur3194@... writes:

<< please become an active part of our

group.....ur experiance has much to offer us.....as ours does u....

lastly.... >>

Reading your experience (and others) makes me so sad. Are you having

treatments currently?

I am very glad I found this group- referred to me by Marta. The closest IRL

support group is about a 2-hour drive in MA, and I thought about starting my

own up here North of Boston... but would that make sense? I myself rarely go

out, but I just need- something- you know? Perhaps this list is exactly what

I was looking for. Hopefully, Boston will have it's own rally & can attend.

<<.not all cases of lyme get a severe as others.....we are all

differant .....when u do feel normal ....savor it.....as some times it is

fleeting and other times it is not....>>

Before I got pregnant, I did have " normal " days. And on the worst day, the

pain wasn't nearly as bad as it is now, every single day. I hope I'll soon

have some " normal " days again, i've really hit about as low as i think I

could bear.

<<do u have a relative or friend who could help u with ur baby?.....use

them!!!! stress only makes worse.......welcome again>>

Unfortunately, no. My mom comes up once in a while from CT to visit & help

me out for a few days. My in-laws live about 45 min away, but my MIL watches

her other grandchild all day while my SIL works. I wish we could afford to

have someone come in a few days a week to help us out. My husband has been a

dear- he does nearly all the cleaning, laundry, cooking, etc... (and he's

good at it!) But I think it's unfair, and that just makes me feel worse

You're so right about the stress factor, I try to remember that all the

time<G>

-Jules

[Guest guest]

In a message dated 01/06/2000 8:12:04 PM Eastern Standard Time,

elsbeth@... writes:

<< Do you have any pain meds to get you through the herx's? >>

No. Should I just take Aleve or something? That has helped me in the past.

To tell the truth, this is probably only the 2nd or 3rd time in my life that

I have needed medication for anything, and I'm not really interested in

taking so many things. I guess I'd better get used to it, eh?

-Jules

[Guest guest]

Reid-

Your letter to Jules brought me to tears. I too feel the same way. While I

am new to this list, I cherish it and the people here so much. When I need

support, I find it here, advice....here. This is a great and wonderful group

of people. In the last year, my husband has left me (not before stealing

everything in the house and emptying the bank accounts), and I am struggling

to keep the business I have worked 18 hours a day- 7 days a week for 4 years

to build. It was my dream- and I am afraid things have gotten so bad both

financially and physically that I will soon lose it. Although now my dream

is not the business- it's to survive and be healthy. To get medical care and

treatment. To be treated fairly by my insurance company, to find friends and

support in my life. It's so sad how having a disease like this changes every

relationship I had in my life. Friends and family I thought would be my

strongest support weren't- and people I barely know are my biggest support.

I have said it so many times before. But, again, thank you all.

[Guest guest]

Jules,

Welcome to our family. I can't imagine what it's like to deal with LD and a

9 month old, but it is good to know that one more person out there has

finally been diagnosed after suffering for so many years and is being

treated appropriately.

I can't comment on your doctor or your treatment, except to say as others

have, that he seems to be a good doctor and your treatment is certainly one

of many that seem to have some positive effect.

I have a 12 y.o. son and I believe I was infected 15 years ago. My doctor

suggested that I test him for Lyme since I was probably infected when I got

pregnant. I decided not to test only because he has always been very healthy

and what would I do if he came out positive? We're just keeping on eye out

for anything suspicious. I pray your baby is LD-free (and precocious, at

least in the walking dept.)

I'm curious if your pregnancy and deliver triggered an increase in symptoms.

Hormones seems to relate to the increase and decrease of symptoms and I've

read that several women became more ill after preganancy.

As for herxing, it seems like many of us have very quick responses to the

abx's (antibiotics). I herxed within 12 hours on a low dose of doxycycline

and had the same reaction on Flagyl.

I was diagnosed about 6 months ago and I'm making great progress

particularly since I started on Flagyl. I had a month of feeling better than

I've felt in 15 years. The last few weeks have still been good but peppered

with days of pain. I don't know whether I'm herxing or it's the Flagyl or

the holidays or what. The blinding fatigue and brain fog are 90% gone. I

tell you this not to sell you one my treatment but just to give you some

hope - some of us do get better.

FYI, some of us incude a " signature " at the end of our emails to help new

people and lyme-brainers to keep track of who's who and who's taken what.

It's not mandatory but just thought I'd explain it to you.

My prayers are with you and your family,

beth

infected w/ Bb in 1984 in California

Undiagnosed bullseye rash

Low grade symptoms through 98

Late neuro symptoms 1/99

Diagnosed 8/99

No ELISA, Western Blot equivocal w/ 4 out of 5 Bb specific bands positive

or equivocal indicative of OLD infection

Abx's: 6 wks oral doxy, 13 wks IV Rocephin, Rocephin w/ Flagyl 1500 mg.

Currently 1000 Flagyl w/ 500 Zithromax

Live in San Francisco

Re: [Lyme-aid] Antibiotics

> Hi,

> My name is Jules, I live north of Boston, grew up in Fairfield County, CT.

> I'm new to this list, and this subject title seemed an appropriate place

for

> me to jump in. I was recently (finally!) diagnosed with Lyme by an

> infectious disease specialist here in Boston (can we mention names here?).

I

> suspect I have had it for around 10 years, perhaps longer. I had been

> conversing with Marta via e-mail, when she told me of this list.

>

> I just started taking 500mg tetracycline (Sumycin) 3X a day for chronic

Lyme.

> I am interested in finding out what to expect from this treatment, as

I've

> not seen mention of it on the internet, the sci.med NG, nor the AOL Lyme

> message board.

>

> My doctor has written on this treatment (http://x-l.net/Lyme/donta97.htm),

> but so far I have not seen any mention of Sumycin. Is it the same as

> doxycycline and minocycline? Those are the only 2 drugs in the tetra

family

> I have read about in the treatment of Lyme. (yes, I did ask my doc about

it,

> but his e-mailed answer was kind of vague, he referred me to his paper on

the

> issue.)

>

> I would really love to hear anyone else's experience on this treatment,

> anecdotal or not, Good or bad. Preferably good- I'd like some hope!

> (wouldn't we all...?) If anyone shares this doctor with me, I'd also like

to

> hear about how your treatments are going, whether you are using this

> tetracycline method, or his other one. According to him, this will be a

" 1-2

> yr cycle of treatments, then we'll go from there. " You can e-mail me

> privately if you think we have the same doctor.

>

> Also, I have read about people " herxing. " Is it possible to have this

> reaction less than 24 hours after beginning the antibiotics? After the

2nd

> dose, I *thought* I was feeling worse, but decided it was probably my

> imagination. But by 2 hours after the 3rd dose of the day, I couldn't get

up

> from the couch! My hands and fingers go numb, then tingle, then are fine-

> then it starts all over again. I couldn't sleep last night because the

pain

> in my knees, back, neck and shoulders was excruciating.

>

> This is really bad, as I have a 9-month-old baby (he will be getting

> tested,too- as will my husband) & it's getting so hard to care for him. I

> also work from home.

>

> Last month, I put my hockey gear into storage. I have gone from being a

> female captain of a men's hockey team, to a shut-in who prays every day

that

> her baby will begin walking- because she just can't carry him anymore. I

> have spent years feeling like I was nuts, feeling like a hypochondriac,

> because the pain I had one day was replaced by a different pain in a

> different body part, the next.

>

> I lost friends, my physical activity...I don't feel good about myself

> anymore. I can't remember what it was like to feel healthy, attractive.

I

> can't remember what it is like to look forward to going out somewhere,

> because for the longest time, I haven't.

>

> My husband has been great all along. He knew I was in pain, he believed

that

> *something* was physically wrong with me- he never once accused me of

making

> it up. I love him for that, when I read about how so many people's lives

and

> relationships have been destroyed by this disease.

>

> I am so sorry all of you are fighting this disease.

>

> As I type this, I am doing a kind of " dance " with my legs, because it

hurts

> to keep my feet flat on the floor, hurts to cross my legs, hurts to prop

my

> feet against the side of the desk...

>

> I'm looking forward to " meeting " all of you, and hearing your experiences

&

> sharing support.

>

> -Jules

>

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

[Guest guest]

Jules,

Do you have any pain meds to get you through the herx's?

beth

Re: [Lyme-aid] Antibiotics

> Hi,

> My name is Jules, I live north of Boston, grew up in Fairfield County, CT.

> I'm new to this list, and this subject title seemed an appropriate place

for

> me to jump in. I was recently (finally!) diagnosed with Lyme by an

> infectious disease specialist here in Boston (can we mention names here?).

I

> suspect I have had it for around 10 years, perhaps longer. I had been

> conversing with Marta via e-mail, when she told me of this list.

>

> I just started taking 500mg tetracycline (Sumycin) 3X a day for chronic

Lyme.

> I am interested in finding out what to expect from this treatment, as

I've

> not seen mention of it on the internet, the sci.med NG, nor the AOL Lyme

> message board.

>

> My doctor has written on this treatment (http://x-l.net/Lyme/donta97.htm),

> but so far I have not seen any mention of Sumycin. Is it the same as

> doxycycline and minocycline? Those are the only 2 drugs in the tetra

family

> I have read about in the treatment of Lyme. (yes, I did ask my doc about

it,

> but his e-mailed answer was kind of vague, he referred me to his paper on

the

> issue.)

>

> I would really love to hear anyone else's experience on this treatment,

> anecdotal or not, Good or bad. Preferably good- I'd like some hope!

> (wouldn't we all...?) If anyone shares this doctor with me, I'd also like

to

> hear about how your treatments are going, whether you are using this

> tetracycline method, or his other one. According to him, this will be a

" 1-2

> yr cycle of treatments, then we'll go from there. " You can e-mail me

> privately if you think we have the same doctor.

>

> Also, I have read about people " herxing. " Is it possible to have this

> reaction less than 24 hours after beginning the antibiotics? After the

2nd

> dose, I *thought* I was feeling worse, but decided it was probably my

> imagination. But by 2 hours after the 3rd dose of the day, I couldn't get

up

> from the couch! My hands and fingers go numb, then tingle, then are fine-

> then it starts all over again. I couldn't sleep last night because the

pain

> in my knees, back, neck and shoulders was excruciating.

>

> This is really bad, as I have a 9-month-old baby (he will be getting

> tested,too- as will my husband) & it's getting so hard to care for him. I

> also work from home.

>

> Last month, I put my hockey gear into storage. I have gone from being a

> female captain of a men's hockey team, to a shut-in who prays every day

that

> her baby will begin walking- because she just can't carry him anymore. I

> have spent years feeling like I was nuts, feeling like a hypochondriac,

> because the pain I had one day was replaced by a different pain in a

> different body part, the next.

>

> I lost friends, my physical activity...I don't feel good about myself

> anymore. I can't remember what it was like to feel healthy, attractive.

I

> can't remember what it is like to look forward to going out somewhere,

> because for the longest time, I haven't.

>

> My husband has been great all along. He knew I was in pain, he believed

that

> *something* was physically wrong with me- he never once accused me of

making

> it up. I love him for that, when I read about how so many people's lives

and

> relationships have been destroyed by this disease.

>

> I am so sorry all of you are fighting this disease.

>

> As I type this, I am doing a kind of " dance " with my legs, because it

hurts

> to keep my feet flat on the floor, hurts to cross my legs, hurts to prop

my

> feet against the side of the desk...

>

> I'm looking forward to " meeting " all of you, and hearing your experiences

&

> sharing support.

>

> -Jules

>

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

[Guest guest]

hi ya'll thought I would pass this on to you, but you might already know

this. I herxed real bad tues and weds, LLMD took me off RX (of course!) and

told me to take 1/4 teaspoon sodium Bicarb to help relieve herx. Now this

herx made me want to die it was absolutely horrible in 16 hours I went from

fine to praying I would Die! after taking Sod-bi within 2 hours fever went

from 102.5 to 100 and I felt alot better, still hurt but at least

tollerable. hope this helps someone! Pepi

[Guest guest]

Unfortunately, not all snorted drugs go from the lungs, past the Blood Brain

Barrier, to the brain.

Rita B