Re: another MD, another antibitoic

[Guest guest]

Lyra,

Each doctor treats differently. Personally, I prefer Zithromax (that's

probably what you're talking about) over doxy.

What you need to do is decide on a doctor to trust. And then trust that

doctor's protocol. Finding a doctor can be difficult, especially when there

are so few LLMDs available. But you need to find someone who you feel you

can talk with. You need to find someone who you can develop a relationship

with. Someone you feel comfortable with. Someone who will listen to you

and answer any questions you might have. You need to also pay attention to

the office staff. Do they make you feel comfortable? Can you call and talk

to them in an emergency and will they get your messages to the doctor? All

these types of questions and issues need to be raised.

Then when you find a doctor that you can talk with, trust them and their

protocol.

This is not an easy disease to deal with. You have a very long road ahead

of you. It may take years before you start to feel better again. In that

time, the most important thing is going to be your relationship with your

doctor.

I understand your frustration. You may need to take some time and not work

so hard on getting treatment. You may need to just let this information

sink in. You may need to do your own research and then make a treatment

guideline that you prefer. You may need to find a Lymie mentor and not

listen to all the different opinions on for a while.

Everyone deals with this disease differently. I don't know what is best for

you, in support or in medical care. It will be up to you and the doctor you

choose to make these decisions.

In the meantime, take a deep breath, maybe a nap and let today's information

sink in a little. Then tackle it one step at a time.

Sincerely,

Robynn

PS Did you have your doctor look and feel the lump on the side of your

neck?

[ ] another MD, another antibitoic

>

> OK, I just saw another LLMD who said I should not be taking wither

> doxy or ceftin but put me on something that starts with a Z. I can't

> take this anymore because I have NO idea who to trust or what to do.

> I think there is a lump on the side of my neck and I don't know if it

> is a swollen gland or not.

>

> Lyra

>

[Guest guest]

I don't want to complicate things - but have you been tested for

bartonella? It is transmitted by ticks and CAN cause a lump. The

swelling can be in a gland or just a pocket of fluid (as my daughters

was). They can drain the fluid and test it. My daughter also had a

lump on her neck when she had bartonella (cat scratch disease). It

responds to only very specific antibiotics (bactrim as I remember).

It's just something to consider - especially if the lump doesn't go

away.

>

> OK, I just saw another LLMD who said I should not be taking wither

> doxy or ceftin but put me on something that starts with a Z. I

can't

> take this anymore because I have NO idea who to trust or what to

do.

> I think there is a lump on the side of my neck and I don't know if

it

> is a swollen gland or not.

>

> Lyra

[Guest guest]

Sounds like Zithromax.........I was on that too......hey, I really think,

that being on different types of abx, is not a bad thing.........I feel

there are so many different strains of the bacteria........different abx

work for different strains.........I also (my own opinion here)......think

that different strains produce different symptoms.........as each strain

gets killed off........you lose the symptoms to that strain.......I think

one of the reasons I am in remission is because of the switching of

abx..........so relax, stay on the Zithromax...........and KILL OFF THOSE

BUGS, if you don't lose some symptoms...........then its time to move on to

a new abx..........(at least six weeks of that particular abx)

But relax, get plenty of rest Lyra........don't stress yourself

out............trust your Dr. and go with it.......keep track of your

symptoms..........Don't quote me on any of this...........this is just my

personal thoughts on the subject............

Hang in there Lyra..........

Connie nwnj

Leave no stone unturned.......

[Guest guest]

Lyra,

Probably Zithromax. I was on it for a long time myself. It is a good

drug for LD, I think it stays in your system longer, I really can't recall

why it is good, maybe someone else can answer that. The lump on your neck

is a swollen lymph node, I had one on the back of my neck that stayed for

over a year and it would ache and grow bigger when I herxed. It means your

immune system is working hard due to infection.

I really have to wonder why you are putting yourself through all this

agony of doctor shopping. You are bound to get different opinions, all the

drugs you were put on so far are acceptable for LD treatment, some doctors

prefer one over the other. You really should pick one doctor and stick with

him/her, do your own Lyme research on the internet, ask questions here and

work on trying to feel better, and less anxious.

Hang in there,

Marta

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

From: <lms@...>

>

> OK, I just saw another LLMD who said I should not be taking wither

> doxy or ceftin but put me on something that starts with a Z. I can't

> take this anymore because I have NO idea who to trust or what to do.

> I think there is a lump on the side of my neck and I don't know if it

> is a swollen gland or not.

>

> Lyra

[Guest guest]

Great...(I aprreciate the information). My husband and my father

seem to think it is a swollen lymph node. Does anyone get these

while they are on antibitoics? The lymph system cleans the blood of

contaminates and they believe it is filled with dead bacteria. Don't

know if this is what is going on or not. I am seeing one of my 5

doctors on Mondy to see what is going on.

Lyra

> >

> > OK, I just saw another LLMD who said I should not be taking

wither

> > doxy or ceftin but put me on something that starts with a Z. I

> can't

> > take this anymore because I have NO idea who to trust or what to

> do.

> > I think there is a lump on the side of my neck and I don't know

if

> it

> > is a swollen gland or not.

> >

> > Lyra

[Guest guest]

Marta,

The first doc put me on 6 weeks of doxy 100mg (2x a day)...which is

standard protocal I guess. I went to get a second opinion and he

sayd that doxy is variable in concentration and he put me on 6 weeks

of ceftin (500mg/2x a day). I then went to an infectious disease

doctor to see if he agressed woth the whole doxy/ceftin issue and he

told me that both are the same really but he siad he usually used

antibitoics longer than that so he gave men another week of Ceftin

for now. OK, now I am feeling better that these are working but I

went to see a doctor that is a great Lyme doctor just to confer that

I am getting better ( I was bitten about 2 months ago so I don't

want to be on the wrong medication and let the disease get worse).

This doc told me that niether doxy or ceftin at the dosages I was

taking were helping at all. Well this made me very concerned because

I was hoping that I had caught the disease very early after going on

antibitoics a 3 weeks after the rash. So now I have not caught the

disease as early as I thought because I wasn't killing any

spirochetes on the meds I was on. He put me on Zithromax and said

that now we can kill the spirochetes. Do I through away the Ceftin

and start the Zithromax or do I finish the Ceftin and than start

Zithromax? I am very confused and want to know that I am killing

something. I have been getting worse and don't know if it is Herx or

just the full manifestation of the disease. I did not have any aches

or pains before I went on antibiotics and now they are getting worse.

I am glad to head that the lump is a good thing. My husband and my

father seem to think it means that it is filled with dead bacteria!

Lyra

Sorry for spelling mistakes...my hand isn't feeling that well.

> Lyra,

> Probably Zithromax. I was on it for a long time myself. It is

a good

> drug for LD, I think it stays in your system longer, I really can't

recall

> why it is good, maybe someone else can answer that. The lump on

your neck

> is a swollen lymph node, I had one on the back of my neck that

stayed for

> over a year and it would ache and grow bigger when I herxed. It

means your

> immune system is working hard due to infection.

> I really have to wonder why you are putting yourself through

all this

> agony of doctor shopping. You are bound to get different opinions,

all the

> drugs you were put on so far are acceptable for LD treatment, some

doctors

> prefer one over the other. You really should pick one doctor and

stick with

> him/her, do your own Lyme research on the internet, ask questions

here and

> work on trying to feel better, and less anxious.

> Hang in there,

> Marta

> ----- Original Message -----

> From: <lms@v...>

[Guest guest]

Hi Connie,

OK, I am not sure how to gage that I am getting better because the

only symptom I had when I went on the antibitoics was Bell's Palsy.

That is almost completely gone now (this may not have to do with the

bacteria getting killed it has to do with reduction of inflammation

of the cranial nerve). But after I went on antibiotics I started

getting the cahes and pains and painful joints. I am not sure that

this is a herx because it has been getting worse for the past 4 weeks

I have been on antibitoucs, I am thinking that maybe the

antiobitoics are not working and I am getting the full maifestation

of the disease. Is there any way to tell if I am getting worse or if

this is hering? Does herxing get progressively worse over the course

of 4 weeks and does it cause progressively worse aches and pains?

I am onto on tyhe Zithromax yet and I was wondering if I should saty

on another 3 weeks of Ceftin or just switch to zithromax right now.

The dco who prescribed it said the ceftin is probably not working so

I should start the Zithromax right away before I get any more

symptoms of the disease.

Lyra

sorry about spelling mistakes.

> Sounds like Zithromax.........I was on that too......hey, I really

think,

> that being on different types of abx, is not a bad thing.........I

feel

> there are so many different strains of the

bacteria........different abx

> work for different strains.........I also (my own opinion

here)......think

> that different strains produce different symptoms.........as each

strain

> gets killed off........you lose the symptoms to that strain.......I

think

> one of the reasons I am in remission is because of the switching of

> abx..........so relax, stay on the Zithromax...........and KILL OFF

THOSE

> BUGS, if you don't lose some symptoms...........then its time to

move on to

> a new abx..........(at least six weeks of that particular abx)

> But relax, get plenty of rest Lyra........don't stress yourself

> out............trust your Dr. and go with it.......keep track of

your

> symptoms..........Don't quote me on any of this...........this is

just my

> personal thoughts on the subject............

> Hang in there Lyra..........

> Connie nwnj

> Leave no stone unturned.......

[Guest guest]

Connie,

Hummmm....you can see why people get upset at my posts? I don't know

why people are upset at my posts. Are you saying it is because I

don't slow down? I am sorry I don't understand this.

Also the reason I was writing was because my doc said my current

treatment is not working. There is a time imperative here because if

indeed my current meds are not working I should get one ones that are

*right away* not after I slow down and let the disease wreck more

havoc on my body. Also I have trusted my gut in the past and it has

always turned out for the worse...common sense is not my strength.

Please tell me why people are upset at my posts.

Lyra

> Hi Lyra,

> You need to SLOW down............I can see why people get upset

with your

> postings........SLOW down......... absorb the

information.....People give

> you a few suggestions, and you take it all in as " THE WORD FOR ALL

CASES OF

> LYME " ....Many of the posts are based on personal

experiences..........I can

> see why you are confused and your head is spinning.........at some

point,

> you are going to have to pull together all of the notes you are

gathering

> from posts and your DR. and your own personal gut!!!!! Then along

with

> your Dr.......plan your treatment.........and don't monitor it day

by

> day.....monitor it more by the week.................

> Slow down, take a few deep breaths........take notes about yourself

and from

> your research, and then look at those notes with your Dr........on

each

> visit..................

> Good luck Lyra........

> Connie nwnj

>

>

> Unfortunately, we are all different in the treatment for this

> disease.....you need to give things time..........