Re: RE:unsure of lyme diagnosis and my treatment

[Guest guest]

,

Even if it is not lyme. They are treating ms with tetracycline/minocin and

having good results. they say it is from mycoplasma infection do a web

search. I think the drs name is siriam or something like that at some army

hospital.

good luck

sharon

[ ] RE:unsure of lyme diagnosis and my treatment

>

> Hi everyone,

> I'm so confused and I was hoping you might have some advice. I'll be as

> brief as possible~

> I was diagnosed 12 years ago with MS, at the age of 25. Since that time,

> I've tried just about every known alternative treatment there is, with no

> success and continuing decline. I decided to get tested for Lyme a few

> years ago, even though I was born, raised and still live in Arizona. The

> test was a urine LUAT test that came back negative. I really didn't think

> I had it but thought it was worth a try. Anyway, the beginning of this

> year my doctor insisted that I be re tested. So, I had the test from

> Bowen which came back with a positive, very high titer. Well, I wasn't

> that surprised because it seemed everyone who tested with them, came back

> positive. So we decided to have me get the Western Blot test by Igenex.

> My results were: Positive IgG (by Igenex standards) with positive bands

> 31, 41, 45, 58 and equivocal bands 28, 39 and 66.

> Negative IgM showing equivocal on bands 18, 30,

> 39, 41, 45, 58, 66 and 93.

> Based on these results, my not so lyme literate doctor (but he tries),

> decided I definitely have Lyme and started me on ABX in July. I've tried

> courses of oral Doxy, Zithro, Biaxin, Tinidazol, and IM Bicillin. But,

> I've only gotten worse plus very sick to my stomach and I don't think it's

> Herx! At this point, I don't really know if I even have Lyme and I don't

> want to keep treating something I don't have, with drugs that are only

> making me worse! On the other hand, maybe I do have Lyme, but I just

> haven't found the right ABX and dosage?

> My doctor said that my options now are, get retested using PCR test by

> Igenex, trying IV ABX probably Rocephin and possibly IVIG. (I would have

> to go to the local hospital to get the IV's and there seems to be some

> confusion as to what dosage I should get)

> If anyone has any advice or even some encouragement, I sure could use it!

> I'm feeling awfully hopeless and depressed at this point!

> Thanks

>

>

>

[Guest guest]

, you have Lyme, probably have for awhile now. Antibiotics arent an

instant fix, they can take months of herxing to get any better, especially

if the diagnosis was long in coming. i went 17 years and it took nearly 4

years of antibiotics to start to feel better. The meds wouldnt be making you

worse if you didnt have something ( Lyme) to allow them to make you feel

crappy.

Usually people stay on one course of antibiotics for a few months, maybe

even 6, as each course kills off a certain type of Lyme bug ( they are in

different stages, different abx kills each stage. I did at least 6 months

of each med, starting with Doxy and Amox, then went to Zith and Ceftin, then

Flagyl and Doxy again.

Lyme isnt an easy cure and if you have gone 12 years with it , then its

going to be a few years yet. If you stop the meds the Lyme will get worse.

Oh, one of my many misdiagnosis was MS, have plaques and Oligliclonal (sp?)

bands and all, but it wasnt MS. Have you read the Bleiweiss report about

the , possible, connection between Lyme and MS?

[Guest guest]

Who is your Lyme doctor? I am trying to find one in the Phila area OR

a doctor that can refer me to one here.

Thanks!

In , " /Rodney " <rod@g...> wrote:

> , you have Lyme, probably have for awhile now. Antibiotics

arent an

> instant fix, they can take months of herxing to get any better,

especially

> if the diagnosis was long in coming. i went 17 years and it took

nearly 4

> years of antibiotics to start to feel better. The meds wouldnt be

making you

> worse if you didnt have something ( Lyme) to allow them to make you

feel

> crappy.

>

> Usually people stay on one course of antibiotics for a few

months, maybe

> even 6, as each course kills off a certain type of Lyme bug ( they

are in

> different stages, different abx kills each stage. I did at least

6 months

> of each med, starting with Doxy and Amox, then went to Zith and

Ceftin, then

> Flagyl and Doxy again.

>

> Lyme isnt an easy cure and if you have gone 12 years with it ,

then its

> going to be a few years yet. If you stop the meds the Lyme will get

worse.

> Oh, one of my many misdiagnosis was MS, have plaques and

Oligliclonal (sp?)

> bands and all, but it wasnt MS. Have you read the Bleiweiss

report about

> the , possible, connection between Lyme and MS?

[Guest guest]

I go to dr. gregory bach in colmar PA. He is very good and aggresive. He

told me what infections I had before my blood was returned. he was right. I

am in new york and it is a 4 hour drive for me. There are people there from

all over the united states. you have to wait in his office quite awhile so

you get to meet the other people and hear stories of incouragement.

[ ] Re: RE:unsure of lyme diagnosis and my treatment

>

>

>

> Who is your Lyme doctor? I am trying to find one in the Phila area OR

> a doctor that can refer me to one here.

>

> Thanks!

>

>

> In , " /Rodney " <rod@g...> wrote:

>> , you have Lyme, probably have for awhile now. Antibiotics

> arent an

>> instant fix, they can take months of herxing to get any better,

> especially

>> if the diagnosis was long in coming. i went 17 years and it took

> nearly 4

>> years of antibiotics to start to feel better. The meds wouldnt be

> making you

>> worse if you didnt have something ( Lyme) to allow them to make you

> feel

>> crappy.

>>

>> Usually people stay on one course of antibiotics for a few

> months, maybe

>> even 6, as each course kills off a certain type of Lyme bug ( they

> are in

>> different stages, different abx kills each stage. I did at least

> 6 months

>> of each med, starting with Doxy and Amox, then went to Zith and

> Ceftin, then

>> Flagyl and Doxy again.

>>

>> Lyme isnt an easy cure and if you have gone 12 years with it ,

> then its

>> going to be a few years yet. If you stop the meds the Lyme will get

> worse.

>> Oh, one of my many misdiagnosis was MS, have plaques and

> Oligliclonal (sp?)

>> bands and all, but it wasnt MS. Have you read the Bleiweiss

> report about

>> the , possible, connection between Lyme and MS?

>

>

>

>

>

>

>

>

>

> Questions and/or comments can be directed to the list owner at

> -Owner

>

>

[Guest guest]

Wow! He is 15 minutes away from me, one town over. Not sure about him

for myself. I can't wait anymore in doctor's offices, lol. I had neck

surgery and had to wait for the pain doc for 3 hrs every month. It

hit a nerve big time with me. Once I went back to work, I told the

office that they had to take me within 20 minutes of my appt. time or

I would leave the office to go back to work. Now, we are on the same

page. Her scheduling problems are not my problems, so to speak and I

ethically do not think it is right to have a patient sit for hours

consistently at every appt. I am back at work and they let me go to

appts, but my time is as valuable as the doctors and I am not waiting

for hours after the appt time that they scheduled and the time that I

reserved out of my schedule.

If you want to e-mail me, I will tell you my story offline.

In , " S Scholz " <sscholz@t...> wrote:

> I go to dr. gregory bach in colmar PA. He is very good and

aggresive. He

> told me what infections I had before my blood was returned. he was

right. I

> am in new york and it is a 4 hour drive for me. There are people

there from

> all over the united states. you have to wait in his office quite

awhile so

> you get to meet the other people and hear stories of incouragement.

> [ ] Re: RE:unsure of lyme diagnosis and my treatment

>

>

> >

> >

> >

> > Who is your Lyme doctor? I am trying to find one in the Phila

area OR

> > a doctor that can refer me to one here.

> >

> > Thanks!

> >

> >

> > In , " /Rodney " <rod@g...> wrote:

> >> , you have Lyme, probably have for awhile now. Antibiotics

> > arent an

> >> instant fix, they can take months of herxing to get any better,

> > especially

> >> if the diagnosis was long in coming. i went 17 years and it took

> > nearly 4

> >> years of antibiotics to start to feel better. The meds wouldnt be

> > making you

> >> worse if you didnt have something ( Lyme) to allow them to make

you

> > feel

> >> crappy.

> >>

> >> Usually people stay on one course of antibiotics for a few

> > months, maybe

> >> even 6, as each course kills off a certain type of Lyme bug (

they

> > are in

> >> different stages, different abx kills each stage. I did at

least

> > 6 months

> >> of each med, starting with Doxy and Amox, then went to Zith and

> > Ceftin, then

> >> Flagyl and Doxy again.

> >>

> >> Lyme isnt an easy cure and if you have gone 12 years with

it ,

> > then its

> >> going to be a few years yet. If you stop the meds the Lyme will

get

> > worse.

> >> Oh, one of my many misdiagnosis was MS, have plaques and

> > Oligliclonal (sp?)

> >> bands and all, but it wasnt MS. Have you read the Bleiweiss

> > report about

> >> the , possible, connection between Lyme and MS?

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Questions and/or comments can be directed to the list owner at

> > -Owner@Y...

> >

> >

[Guest guest]

he is one of the best and to get well I will wait. He really knows his stuff

that is why I drive 4 hours.He has evening appts.His office does not open

until 11 and is usually there until 2 am. my first appt I did not get out of

there until 10 if that helps you.

[ ] Re: RE:unsure of lyme diagnosis and my treatment

>>

>>

>> >

>> >

>> >

>> > Who is your Lyme doctor? I am trying to find one in the Phila

> area OR

>> > a doctor that can refer me to one here.

>> >

>> > Thanks!

>> >

>> >

>> > In , " /Rodney " <rod@g...> wrote:

>> >> , you have Lyme, probably have for awhile now. Antibiotics

>> > arent an

>> >> instant fix, they can take months of herxing to get any better,

>> > especially

>> >> if the diagnosis was long in coming. i went 17 years and it took

>> > nearly 4

>> >> years of antibiotics to start to feel better. The meds wouldnt be

>> > making you

>> >> worse if you didnt have something ( Lyme) to allow them to make

> you

>> > feel

>> >> crappy.

>> >>

>> >> Usually people stay on one course of antibiotics for a few

>> > months, maybe

>> >> even 6, as each course kills off a certain type of Lyme bug (

> they

>> > are in

>> >> different stages, different abx kills each stage. I did at

> least

>> > 6 months

>> >> of each med, starting with Doxy and Amox, then went to Zith and

>> > Ceftin, then

>> >> Flagyl and Doxy again.

>> >>

>> >> Lyme isnt an easy cure and if you have gone 12 years with

> it ,

>> > then its

>> >> going to be a few years yet. If you stop the meds the Lyme will

> get

>> > worse.

>> >> Oh, one of my many misdiagnosis was MS, have plaques and

>> > Oligliclonal (sp?)

>> >> bands and all, but it wasnt MS. Have you read the Bleiweiss

>> > report about

>> >> the , possible, connection between Lyme and MS?

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> > Questions and/or comments can be directed to the list owner at

>> > -Owner@Y...

>> >

>> >

[Guest guest]

Thanks so much. I will look into him. My foot dr. suggested him. The

Lyme Foundation did not recommend him if you catch my drift.

In , " S Scholz " <sscholz@t...> wrote:

> he is one of the best and to get well I will wait. He really knows

his stuff

> that is why I drive 4 hours.He has evening appts.His office does

not open

> until 11 and is usually there until 2 am. my first appt I did not

get out of

> there until 10 if that helps you.

> [ ] Re: RE:unsure of lyme diagnosis and my

treatment

> >>

> >>

> >> >

> >> >

> >> >

> >> > Who is your Lyme doctor? I am trying to find one in the Phila

> > area OR

> >> > a doctor that can refer me to one here.

> >> >

> >> > Thanks!

> >> >

> >> >

> >> > In , " /Rodney " <rod@g...> wrote:

> >> >> , you have Lyme, probably have for awhile now.

Antibiotics

> >> > arent an

> >> >> instant fix, they can take months of herxing to get any

better,

> >> > especially

> >> >> if the diagnosis was long in coming. i went 17 years and it

took

> >> > nearly 4

> >> >> years of antibiotics to start to feel better. The meds

wouldnt be

> >> > making you

> >> >> worse if you didnt have something ( Lyme) to allow them to

make

> > you

> >> > feel

> >> >> crappy.

> >> >>

> >> >> Usually people stay on one course of antibiotics for a few

> >> > months, maybe

> >> >> even 6, as each course kills off a certain type of Lyme bug (

> > they

> >> > are in

> >> >> different stages, different abx kills each stage. I did at

> > least

> >> > 6 months

> >> >> of each med, starting with Doxy and Amox, then went to Zith

and

> >> > Ceftin, then

> >> >> Flagyl and Doxy again.

> >> >>

> >> >> Lyme isnt an easy cure and if you have gone 12 years with

> > it ,

> >> > then its

> >> >> going to be a few years yet. If you stop the meds the Lyme

will

> > get

> >> > worse.

> >> >> Oh, one of my many misdiagnosis was MS, have plaques and

> >> > Oligliclonal (sp?)

> >> >> bands and all, but it wasnt MS. Have you read the Bleiweiss

> >> > report about

> >> >> the , possible, connection between Lyme and MS?

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> > Questions and/or comments can be directed to the list owner at

> >> > -Owner@Y...

> >> >

> >> >

[Guest guest]

<< Her scheduling problems are not my problems, so to speak and I

ethically do not think it is right to have a patient sit for hours

consistently at every appt.>>

You are absolutely correct. There are several good lyme Drs. in NJ. There is

one that I know of that consistently overbooks patients, and you wait for hours.

That just isn't right......The longest I have ever sat for my LLMD was 30minutes

and I am usually the last appt of the day.

Connieknwnj

[Guest guest]

<<<My doctor said that my options now are, get retested using PCR test by

Igenex, trying IV ABX probably Rocephin and possibly IVIG. (I would have to go

to the local hospital to get the IV's and there seems to be some confusion as to

what dosage I should get)

If anyone has any advice or even some encouragement, I sure could use it! I'm

feeling awfully hopeless and depressed at this point!>>>

It took me a couple of Drs. before I found one that knew what they were talking

about when it comes to Lyme Disease.

I would look for another Dr. while you continue treatment. I was on all the

orals and injections for years before turning to IV. I did 8 months of IV,

before my symptoms left my body........It took another 6 months after stopping

IV, to start feeling myself again........abx are really tough on your system.

It throws everything out of whack.

Go with your gut feelings on this.

Connieknwnj

[Guest guest]

<<<Usually people stay on one course of antibiotics for a few months, maybe

even 6, as each course kills off a certain type of Lyme bug ( they are in

different stages, different abx kills each stage. I did at least 6 months

of each med, starting with Doxy and Amox, then went to Zith and Ceftin, then

Flagyl and Doxy again.>>>

I would think 6 months is too long, unless you are seeing a loss of some of your

symptoms. If after three months there is absolutely no improvement what so

ever, you should consider new treatment options.

Connieknwnj