Re: Which ABX is right?

[Guest guest]

--- Starkman <Namkrats3@...> wrote:

> From: Namkrats3@... ( Starkman)

>

> Hi All,

>

> First I

> would like to tell you all what a wonderful group

> this is. The

> information has been invaluable. After feeling lousy

> for 10 years (after

> many deer tick bites) and having negative ELISA

> tests, I almost gave up.

> After seeing that many people on this list also had

> the same symptoms,

> my husband and I pushed on, and after many tests and

> MDs, I am now going

> to be treated. (FINALLY!)

> My LLMD wants to start off conservatively with oral

> abx. The choice

> seems to be between doxy. and ceftin. Does anybody

> have an opinion on

> which one seems more helpful in late stage LD? I

> have neurological

> problems. Is one better than the other for neuro LD?

> Thanks, Joan

>

>

> Joan-

I have alot of the neurological symptoms as well as possible cardiac

involvment.(Will find out soon about the cardiac) My LLD put me on IV

Rocephin due to the fact that it penetrates the cell wall and will kill

off any sphiros that are inside the cell membrane. What does does he

want to put you on? That is very important because if the dose is too

low you are just wasting your time and money. You might want to ask

about the IV route. Its not as convienant as orals but the outcome will

probably be better.

Take care.

L(MI)

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_____________________________________________________________

[Guest guest]

In a message dated 5/16/99 12:41:41 PM Eastern Daylight Time,

ranlin@... writes:

>

> Joan,

> I had Lyme for almost 4 years before I finally got help. He started me

> out on Doxy, Ceftin, and Mephron because of a co-infection. Have you been

> checked for other tick diseases?

> After 6 months of oral, he switched me to I.V. I am going to try the

> hyperbaric chamber at the end of the month. I then am supposed to go back

> on I.V. I feel some better, but far from functioning like a normal human

> being. I have neurological lyme as well. I just recently started falling

> down a lot. So I have had to resort to a cane. I get my knees Xrayed next

> week to see what is going on. Balance is bad also.

> Well, I have not been much help, but there is a girl named Marta that

> might be able to answer more of you questions about tests. I am sure she

> will read this post and contact you if she can help....I have found her to

> be very helpful....Love to you

> P.S. You need to be tested through Igenex Lab.

Hi

When did you notice an improvement . Was it after the ceftin or after the IV

or both ?

thank you

lea

[Guest guest]

Joan,

I had Lyme for almost 4 years before I finally got help. He started me

out on Doxy, Ceftin, and Mephron because of a co-infection. Have you been

checked for other tick diseases?

After 6 months of oral, he switched me to I.V. I am going to try the

hyperbaric chamber at the end of the month. I then am supposed to go back

on I.V. I feel some better, but far from functioning like a normal human

being. I have neurological lyme as well. I just recently started falling

down a lot. So I have had to resort to a cane. I get my knees Xrayed next

week to see what is going on. Balance is bad also.

Well, I have not been much help, but there is a girl named Marta that

might be able to answer more of you questions about tests. I am sure she

will read this post and contact you if she can help....I have found her to

be very helpful....Love to you

P.S. You need to be tested through Igenex Lab.

[Lyme-aid] Which ABX is right?

From: Namkrats3@... ( Starkman)

Hi All,

First I

would like to tell you all what a wonderful group this is. The

information has been invaluable. After feeling lousy for 10 years (after

many deer tick bites) and having negative ELISA tests, I almost gave up.

After seeing that many people on this list also had the same symptoms,

my husband and I pushed on, and after many tests and MDs, I am now going

to be treated. (FINALLY!)

My LLMD wants to start off conservatively with oral abx. The choice

seems to be between doxy. and ceftin. Does anybody have an opinion on

which one seems more helpful in late stage LD? I have neurological

problems. Is one better than the other for neuro LD?

Thanks, Joan

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[Guest guest]

Hi Joan,

First off, glad you enjoy the list, and welcome. Doxycycline is the

drug of choice for early Lyme and also is useful if you happen to be

coinfected with either HME or HGE (Ehrlichiosis diseases). Ceftin is good

too, for early Lyme. Have you seen Dr Burrascano's protocol for Lyme

treatment. I am sending it to you separately, maybe you could print it out

and share with your doctor. Many of us with later stage Lyme and

neurological problems are on a combination of drugs, I am on 1500mg of

Ceftin and 250mg of Zithromax daily. It seems to be helping me somewhat, I

am a lot better than I was 6 months ago.

I am so happy you finally got your doctor to listen to you, hopefully you

can get him to read Dr B's recommendation of treatment and be on the road to

feeling better,.

Good luck to you,

Marta

[Guest guest]

In a message dated 5/16/99 10:16:46 PM Eastern Daylight Time,

ranlin@... writes:

> Lea.

> I did dot notice much of an improvement until the I.V> I had it for 7

> months and the ins. cut me off. We are appealing it. Three days after the

> I.V. stopped I started feeling awful again. I can hardly walk and I hurt

> all over.....

Hi

Hope you feel better soon.

thank you for your response

take care

lea

[Guest guest]

Lea.

I did dot notice much of an improvement until the I.V> I had it for 7

months and the ins. cut me off. We are appealing it. Three days after the

I.V. stopped I started feeling awful again. I can hardly walk and I hurt

all over.....

Re: [Lyme-aid] Which ABX is right?

>From: Memyo@...

>

>In a message dated 5/16/99 12:41:41 PM Eastern Daylight Time,

>ranlin@... writes:

>

>>

>> Joan,

>> I had Lyme for almost 4 years before I finally got help. He started

me

>> out on Doxy, Ceftin, and Mephron because of a co-infection. Have you

been

>> checked for other tick diseases?

>> After 6 months of oral, he switched me to I.V. I am going to try

the

>> hyperbaric chamber at the end of the month. I then am supposed to go

back

>> on I.V. I feel some better, but far from functioning like a normal

human

>> being. I have neurological lyme as well. I just recently started

falling

>> down a lot. So I have had to resort to a cane. I get my knees Xrayed

next

>> week to see what is going on. Balance is bad also.

>> Well, I have not been much help, but there is a girl named Marta

that

>> might be able to answer more of you questions about tests. I am sure

she

>> will read this post and contact you if she can help....I have found her

to

>> be very helpful....Love to you

>> P.S. You need to be tested through Igenex Lab.

>Hi

>When did you notice an improvement . Was it after the ceftin or after the

IV

>or both ?

>thank you

>lea

>

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[Guest guest]

Joan,

I'm so glad you're finally going to be treated. For what it's worth, my

doctor (very Lyme-literate and well-known) told me doxy is NOT her first

choice for late-stage Lyme. She said it's great in early infections but it

doesn't do the job in late ones. For me, it cleared up a lot of symptoms,

but when I went off it for two days they all came roaring back (and I'd been

on 600 mg per day for over 3 mos at that point!) She told me it had just

been tamping down the infection, not actually wiping it out.

I am on Biaxin (500 mg 2 x day) and Ceftin (500 mg once per day) and it

seems to be working really well. I am having a major herx -- much bigger

than I ever had on doxy -- and a lot of chronic things seem to be clearing

up.

Jean

Starkman wrote:

> From: Namkrats3@... ( Starkman)

>

> Hi All,

> First I

> would like to tell you all what a wonderful group this is. The

> information has been invaluable. After feeling lousy for 10 years (after

> many deer tick bites) and having negative ELISA tests, I almost gave up.

> After seeing that many people on this list also had the same symptoms,

> my husband and I pushed on, and after many tests and MDs, I am now going

> to be treated. (FINALLY!)

> My LLMD wants to start off conservatively with oral abx. The choice

> seems to be between doxy. and ceftin. Does anybody have an opinion on

> which one seems more helpful in late stage LD? I have neurological

> problems. Is one better than the other for neuro LD?

> Thanks, Joan

>

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

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>

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

[Guest guest]

You know, , for what it's worth.... I read an article in the newspaper a

few years ago about something called " cerebral hypertension " . Basically it was

an overaccumulation of fluid in the brain. (The actual cerebro-spinal fluid,

not fluid in the membranes). It caused loss of balance, a kind of tippy-toe

walking, and some other things I forget. I recognized symptoms that my

grandmother was experiencing and passed it on to her doctor, but he said she

was just getting old. The fact that she was 92 and had been walking just fine

until then didn't seem to phase him.

I thought it might be an avenue to explore.

Girard wrote:

> From: " Girard " <ranlin@...>

>

> Joan,

> I had Lyme for almost 4 years before I finally got help. He started me

> out on Doxy, Ceftin, and Mephron because of a co-infection. Have you been

> checked for other tick diseases?

> After 6 months of oral, he switched me to I.V. I am going to try the

> hyperbaric chamber at the end of the month. I then am supposed to go back

> on I.V. I feel some better, but far from functioning like a normal human

> being. I have neurological lyme as well. I just recently started falling

> down a lot. So I have had to resort to a cane. I get my knees Xrayed next

> week to see what is going on. Balance is bad also.

>

[Guest guest]

as for an oral......i would choose ceftin however it can be hard on ur

stomach......my favorite oral is zithromax......however if u do not have a rx

plan it can be expensive...

Reid

[Guest guest]

I had an MRI done last fall. Would something llike that show up? I did

not start losing my balance until about a month or so ago. So who knows. My

Lyme doc says it is from the Lyme. I fell 3 times last week so I had to get

a cane. I hate it....I cried because I have to use it. It was bad enough

having to ride in a wheel chair at Disney. It is the only way I could enjoy

the trip....Love

Re: [Lyme-aid] Which ABX is right?

>From: Scully <jscully@...>

>

>You know, , for what it's worth.... I read an article in the newspaper

a

>few years ago about something called " cerebral hypertension " . Basically it

was

>an overaccumulation of fluid in the brain. (The actual cerebro-spinal

fluid,

>not fluid in the membranes). It caused loss of balance, a kind of tippy-toe

>walking, and some other things I forget. I recognized symptoms that my

>grandmother was experiencing and passed it on to her doctor, but he said

she

>was just getting old. The fact that she was 92 and had been walking just

fine

>until then didn't seem to phase him.

>I thought it might be an avenue to explore.

>

> Girard wrote:

>

>> From: " Girard " <ranlin@...>

>>

>> Joan,

>> I had Lyme for almost 4 years before I finally got help. He started

me

>> out on Doxy, Ceftin, and Mephron because of a co-infection. Have you

been

>> checked for other tick diseases?

>> After 6 months of oral, he switched me to I.V. I am going to try the

>> hyperbaric chamber at the end of the month. I then am supposed to go

back

>> on I.V. I feel some better, but far from functioning like a normal human

>> being. I have neurological lyme as well. I just recently started

falling

>> down a lot. So I have had to resort to a cane. I get my knees Xrayed

next

>> week to see what is going on. Balance is bad also.

>>

>

>

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[Guest guest]

from all i have read this is what is recommended as to actually WORK if you

have late stage LD. i am hoping my dr. will do combo abx for me and not

that (** & ( & ^ doxyc. stuff AGAIN! glad you are having SUCCESS!!!!

>From: Scully <jscully@...>

>

>Joan,

>I'm so glad you're finally going to be treated. For what it's worth, my

>doctor (very Lyme-literate and well-known) told me doxy is NOT her first

>choice for late-stage Lyme. She said it's great in early infections but it

>doesn't do the job in late ones. For me, it cleared up a lot of symptoms,

>but when I went off it for two days they all came roaring back (and I'd been

>on 600 mg per day for over 3 mos at that point!) She told me it had just

>been tamping down the infection, not actually wiping it out.

>

>I am on Biaxin (500 mg 2 x day) and Ceftin (500 mg once per day) and it

>seems to be working really well. I am having a major herx -- much bigger

>than I ever had on doxy -- and a lot of chronic things seem to be clearing

>up.

>

>Jean

>

>

> Starkman wrote:

>

>> From: Namkrats3@... ( Starkman)

>>

>> Hi All,

>> First I

>> would like to tell you all what a wonderful group this is. The

>> information has been invaluable. After feeling lousy for 10 years (after

>> many deer tick bites) and having negative ELISA tests, I almost gave up.

>> After seeing that many people on this list also had the same symptoms,

>> my husband and I pushed on, and after many tests and MDs, I am now going

>> to be treated. (FINALLY!)

>> My LLMD wants to start off conservatively with oral abx. The choice

>> seems to be between doxy. and ceftin. Does anybody have an opinion on

>> which one seems more helpful in late stage LD? I have neurological

>> problems. Is one better than the other for neuro LD?

>> Thanks, Joan

>>

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

>> Got an opinion?

>>

>> Make it count! Sign up for the ONElist Weekly Survey now.

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>> Please send privately messages unrelated to lyme.

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

>

>

>

>

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Pulaski, VA 24301

[Guest guest]

Hi

I'm so glad that you're getting some relief on the Biaxin and Ceftin. It

sounds like a good combination.

I agree that Doxy isn't a first choice in late Neuro Lyme. My

neurologist is the one who prescribed it-100mg 2x a day for 3 weeks. I

told him he had to be kidding (that's how it goes with negative to

borderline blood tests)! He is a nice man, but I'm unhappy with his

opinions on treatment. I have an app't w/ a highly regarded LLMD in 3

weeks. Since my symptoms are getting worse daily, I am going to start

the doxy and hope that it keeps me from getting worse until then.

Thanks for you reply!

Joan

[Guest guest]

Hi ,

It was nice hearing from you. Yes, I have been tested for Babesia and I

am waiting for the results from Igenex. Were you taking Doxy, Ceftin and

Mephron at the same time, or separately? Did they help at all?

My neurologst wants me to try Doxy for 3 weeks. I'm going to do that

because I have an app't with a LL Infectious disease specialist in 3

weeks, and since I feel SO LOUSY, I'm hoping it will tide me over. I'm

glad that you're getting some relief from the I.V.

Hang in there!

Joan

[Guest guest]

one uit worked well for me the only thing that worked better was bicillan

shots ......IV (12 Weeks ) did nothing for me......also it was tolerated well

by my stomach.....ceftin and biazin really tear me up.......

Reid

[Guest guest]

Hi Reid,

Thanks for the advice. What was it about Zithromax that made it your

favorite oral abx?

Joan

[Guest guest]

Starkman wrote:

> Hi

> I'm so glad that you're getting some relief on the Biaxin and Ceftin. It

> sounds like a good combination.

> I agree that Doxy isn't a first choice in late Neuro Lyme. My

> neurologist is the one who prescribed it-100mg 2x a day for 3 weeks. I

> told him he had to be kidding (that's how it goes with negative to

> borderline blood tests)! He is a nice man, but I'm unhappy with his

> opinions on treatment. I have an app't w/ a highly regarded LLMD in 3

> weeks. Since my symptoms are getting worse daily, I am going to start

> the doxy and hope that it keeps me from getting worse until then.

> Thanks for you reply!

> Joan

>

>

Hi Joan --My first (non-LL) doc also prescribed 200 mg of doxy for me. I called

him up and said I'd read the standard protocol and I'd been taking 300, and so I

needed a refill a little sooner than expected. Sometimes it's easier to

apologize than to ask permission. :-)

Just be sure you take them at equally spaced intervals (8 hrs apart for 3 x day,

12 hrs apart for 2 per day) and always eat first. Doxy really makes a lot of

people nauseated unless taken with food.

GOod luck! I'm glad you have a LLMD visit in your future.

Jean

[Guest guest]

Hi Marta,

Thanks for all the useful info. I'm glad that the Ceftin and Zithromax

is helping you. Were you ever on I.V.? If so, did it help? I'm sure I

must have read what treatments you have had, but I've forgotten-please

excuse my so-called " memory " ! My best to you, Joan

[Guest guest]

Hi Reid,

Thanks for the helpful info.

Joan

[Guest guest]

Hi ,

My neurologist wants to start w/Doxy. No use in talking to him about

I.V.-I had to take every test in the world before he would even

prescribe the Doxy. I will probably take it until I see my new LLMD in 3

weeks. I hope all goes well w/your cardiac tests. I have cardiac

" irregularities " , but was told they are not serious(?). Take care, Joan

[Guest guest]

--- Starkman <Namkrats3@...> wrote:

> From: Namkrats3@... ( Starkman)

>

> Hi ,

> My neurologist wants to start w/Doxy. No use in

> talking to him about

> I.V.-I had to take every test in the world before he

> would even

> prescribe the Doxy. I will probably take it until I

> see my new LLMD in 3

> weeks. I hope all goes well w/your cardiac tests. I

> have cardiac

> " irregularities " , but was told they are not

> serious(?). Take care, Joan

>

> Joan-

I know what you mean about taking the doxy until you see someone. I did

the same thing. My PCP put me on 300mg a day for a month until i saw

the Infectious Disease guy who said that it was adequate treatment and

that since my Western Blot was neg. (which it wasnt) i was fine. Now

that ive seen my LLD and found out that the Doxy could have actually

caused the IgG to be neg and that the dose was way to low to do any

good i am seeing the truth about the docs around here.

Thanks for the thoughts. I havnt heard from the docs office so may be

good news or may be he is having it evauluated by the cardiologist he

will send me to.

Will keep you posted. Good luck with your new LLD. Hope he/she is as

wonderful as my LLD.

Take care L (MI)

>

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_____________________________________________________________

[Guest guest]

Hi Joan,

Don't apologize for forgetting, we all repeat ourselves here and nobody

notices....part of the disease. I was on IV Rocephin for 4 weeks in Jan/Feb

98, followed by two weeks of IV Claforan. I felt awful until 2 weeks after

the infusions, and then I felt wonderful, back to my old self for two

glorious weeks. If I could do cartwheels, I would have been doing

them...LOL! Sadly, I relapsed, and have been on the Ceftin/Zith combo ever

since, my doc won't fight with the insurance company for more IV, even

though I had neuropsychiatric testing and MRI's that show brain lesions. I

would change doctors if I could find one locally who took my insurance plan.

Best to you,

Marta

Hi Marta,

Thanks for all the useful info. I'm glad that the Ceftin and Zithromax

is helping you. Were you ever on I.V.? If so, did it help? I'm sure I

must have read what treatments you have had, but I've forgotten-please

excuse my so-called " memory " ! My best to you, Joan

[Guest guest]

Hi ,

Yes, I do get the crawling sensations in patches over most of my body. I

have read that it is due to nerve inflammation. I haven't noticed the

goose bumps, but who knows-that could be next. I was wondering who your

LLMD is since I live in N.Y., too. If you want to you can E-mail me

privately. My best to

you, Joan

[Guest guest]

Hi ,

I have not had a rash that occurs every day, but I sure can identify

with the itchy patches, the feeling that something was crawling in my scalp,

too. I used to get them bad, wonder how they finally went away? Maybe the

Ceftin? It could be as I am pretty sure I had them until I started that

med.

Sorry your insurance company has cut you off of IV treatment, with this

recurring symptom that is controlled by the IV meds, you should consider

appealing....would your doctor help you appeal?

Best to you,

Marta

-

>From: " Girard " <ranlin@...>

>

>Joan,

> Yes, I was taking all three together. He has tried several

>combinations and nothing seemed to help until I went on I.V. You should

>have seen the rash I would get all over my body. When I first got up in

the

>morning. I have pictures. My doc. said it wa caused from chronic Bab. It

>was going away on the I.V. Now my Ins. Co. won't let me have anymore.

>Three days after it was stopped, the rash began to re-appear. It scares

me

>to death. I also get crawling sensations in patches all over my body. They

>raise up like little goose bumps only in seperate patches. Drives me

>insane. Have you heard anyone complain of this symptom?......Hugs

[Guest guest]

Joan,

Yes, I was taking all three together. He has tried several

combinations and nothing seemed to help until I went on I.V. You should

have seen the rash I would get all over my body. When I first got up in the

morning. I have pictures. My doc. said it wa caused from chronic Bab. It

was going away on the I.V. Now my Ins. Co. won't let me have anymore.

Three days after it was stopped, the rash began to re-appear. It scares me

to death. I also get crawling sensations in patches all over my body. They

raise up like little goose bumps only in seperate patches. Drives me

insane. Have you heard anyone complain of this symptom?......Hugs

Re: [Lyme-aid] Which ABX is right?

Hi ,

It was nice hearing from you. Yes, I have been tested for Babesia and I

am waiting for the results from Igenex. Were you taking Doxy, Ceftin and

Mephron at the same time, or separately? Did they help at all?

My neurologst wants me to try Doxy for 3 weeks. I'm going to do that

because I have an app't with a LL Infectious disease specialist in 3

weeks, and since I feel SO LOUSY, I'm hoping it will tide me over. I'm

glad that you're getting some relief from the I.V.

Hang in there!

Joan

[Guest guest]

Marta,

We have already started the appeal. Doctors are all in agreement. Plus

my husbband's sister worked for blue cross at one time. She knows all of

the in and out. So, she is helping us to get all the necessary forms and

letters together. She seems to think that there is no way they will deny.

Time will tell. Please pray for me.....Love

Re: [Lyme-aid] Which ABX is right?

>From: " J & M McCoy " <mlmccoy@...>

>

>Hi ,

> I have not had a rash that occurs every day, but I sure can identify

>with the itchy patches, the feeling that something was crawling in my

scalp,

>too. I used to get them bad, wonder how they finally went away? Maybe the

>Ceftin? It could be as I am pretty sure I had them until I started that

>med.

> Sorry your insurance company has cut you off of IV treatment, with this

>recurring symptom that is controlled by the IV meds, you should consider

>appealing....would your doctor help you appeal?

>Best to you,

>Marta

>-

>

>>From: " Girard " <ranlin@...>

>>

>>Joan,

>> Yes, I was taking all three together. He has tried several

>>combinations and nothing seemed to help until I went on I.V. You should

>>have seen the rash I would get all over my body. When I first got up in

>the

>>morning. I have pictures. My doc. said it wa caused from chronic Bab. It

>>was going away on the I.V. Now my Ins. Co. won't let me have anymore.

>>Three days after it was stopped, the rash began to re-appear. It scares

>me

>>to death. I also get crawling sensations in patches all over my body.

They

>>raise up like little goose bumps only in seperate patches. Drives me

>>insane. Have you heard anyone complain of this symptom?......Hugs

>

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