Re: Do I give up on antibiotics?

[Guest guest]

,

Don't get discouraged yet. My husband has had Lyme for at least 3

years. He has been in treatment for over a year. During that time,

he's been on at least 5 different antibiotic combinations. This last

combo that he is on seems to be helping, but he was on it for about 2

months before it started to kick in. He is no where near " better, " but

he is improving. Sometimes, it just takes the right medication to get

those little buggers.

Hopefully your new LLMD will be able to find the right combination for

you. Just remember, a lot of treatment is trial and error - what ABX

can you tolerate and which ones work for you in what combination. Not

every protocol works for every patient. You and your doctor need to

find the right one.

Good luck,

________________________________

From: [mailto: ] On

Behalf Of

Sent: Monday, March 14, 2011 11:24 AM

Subject: [ ] Do I give up on antibiotics?

I started antibiotics last october after quitting bioligicals and

methotrexate. The immunosuppressants made me worse.

First was doxy 100mg doxy 3x weekly, then increased after a while to

200mg twice daily. I had a few good days but seemed to get worse

overall.

In January I was on 250mg zithromax every day for 2 weeks. This seemed

to cause a herx immediately but I just continued to get worse, even

after quitting for a couple weeks.

In february we tried Levaquin 1/2 tab daily. Again I got another step

worse and stayed that way.

Currently I am starting Metronidazole alone and am getting worse again.

I've never tested positive for Lyme on a test except for 2 positive

bands and 4 indeterminate bands. My symptoms suggest lyme (wt loss,

fatigue, endocrine problems, severe joint pain).

My doctor is a very well respected LLMD and is discouraged- he's sending

me to another LLMD (a lateral move that I suggest is to get rid of me).

My bloodwork is improving: RF, Sed rate, CRP all have come down some

after quitting biologicals. I do not feel better and my joint damage is

progressing, however.

Isn't it reasonable to expect more than 4 months on abs before

improvement? Or is my disease just getting worse as we aren't treating

properly?

I've treated candida agressively with diet and medical and natural

supplements for 6 years. I still can't eat a bite of fruit. Is Candida

ever the first symptom for people with Lyme?

Thanks for any suggestions,

[Guest guest]

,

You have my sympathy -- your case sounds very difficult!

If you can possibly swing it, you might think of going to Columbia

University Medical School's Lyme Disease Center for their second opinion

service. I don't know if your insurance will cover it, but I've heard it is

$4,000 or so for two days of intensive testing and analysis.

Whether it is Columbia or not, it sounds like a second opinion and a fresh

set of eyes on your case can only be a good thing.

On Mon, Mar 14, 2011 at 11:23 AM, <scottinfowlerville@...>wrote:

>

>

> I started antibiotics last october after quitting bioligicals and

> methotrexate. The immunosuppressants made me worse.

>

> First was doxy 100mg doxy 3x weekly, then increased after a while to 200mg

> twice daily. I had a few good days but seemed to get worse overall.

>

> In January I was on 250mg zithromax every day for 2 weeks. This seemed to

> cause a herx immediately but I just continued to get worse, even after

> quitting for a couple weeks.

>

> In february we tried Levaquin 1/2 tab daily. Again I got another step worse

> and stayed that way.

>

> Currently I am starting Metronidazole alone and am getting worse again.

>

> I've never tested positive for Lyme on a test except for 2 positive bands

> and 4 indeterminate bands. My symptoms suggest lyme (wt loss, fatigue,

> endocrine problems, severe joint pain).

>

> My doctor is a very well respected LLMD and is discouraged- he's sending me

> to another LLMD (a lateral move that I suggest is to get rid of me).

>

> My bloodwork is improving: RF, Sed rate, CRP all have come down some after

> quitting biologicals. I do not feel better and my joint damage is

> progressing, however.

>

> Isn't it reasonable to expect more than 4 months on abs before improvement?

> Or is my disease just getting worse as we aren't treating properly?

>

> I've treated candida agressively with diet and medical and natural

> supplements for 6 years. I still can't eat a bite of fruit. Is Candida ever

> the first symptom for people with Lyme?

>

> Thanks for any suggestions,

>

>

>

>

[Guest guest]

You have to remember that every LLMD is risking his/her medical license to treat

Lyme sufferers (like my wife). If your current LLMD says to see a different

LLMD, he/she has a good reason.

I know you're not near this guy, but he manages to work with the insurance

companies. I've met him, and was extremely impressed (but we have little income

and no insurance on my wife). http://www.lyme-disease-testing.com/

[Guest guest]

Steve,

Thank you for posting this URL. This option is affordable and sounds good

enough for me to fly to Pennsylvania. I live in the SF Bay Area and there

are lots of good doctors here, but first visits are up to $600! We lost our

insurance when my husband's job ended (it was a contract job) and I can't

afford to see my LLMD.

Janet

[Guest guest]

, after being sick for 24.5 years, my LLMD started me very slowly. I

did gradually increasing oral abx for six months. Levaquin made a huge

difference but Doryx did not. I had some better days but overall, nothing

to write home about. Then I went on IV Rocephin last May and my whole world

improved. My first 2 - 3 months were up and down rough but I got better and

better. Now, I've added IV Zithro. I'm having many, many days when I feel,

if I can remember correctly, nearly normal. I am tired of the IV but

terrified to go off it, too. While my regimen is very personalized to me,

has your LLMD considered IV?

What biologicals were you on?

Val

Posted by: " "

<mailto:scottinfowlerville@...?Subject=%20Re%3A%20Do%20I%20give%20up%2

0on%20antibiotics%3F> scottinfowlerville@...

<scottinfowlerville> scottinfowlerville

Mon Mar 14, 2011 9:34 am (PDT)

I started antibiotics last october after quitting bioligicals and

methotrexate. The immunosuppressants made me worse.

First was doxy 100mg doxy 3x weekly, then increased after a while to 200mg

twice daily. I had a few good days but seemed to get worse overall.

In January I was on 250mg zithromax every day for 2 weeks. This seemed to

cause a herx immediately but I just continued to get worse, even after

quitting for a couple weeks.

In february we tried Levaquin 1/2 tab daily. Again I got another step worse

and stayed that way.

Currently I am starting Metronidazole alone and am getting worse again.

I've never tested positive for Lyme on a test except for 2 positive bands

and 4 indeterminate bands. My symptoms suggest lyme (wt loss, fatigue,

endocrine problems, severe joint pain).

My doctor is a very well respected LLMD and is discouraged- he's sending me

to another LLMD (a lateral move that I suggest is to get rid of me).

My bloodwork is improving: RF, Sed rate, CRP all have come down some after

quitting biologicals. I do not feel better and my joint damage is

progressing, however.

Isn't it reasonable to expect more than 4 months on abs before improvement?

Or is my disease just getting worse as we aren't treating properly?

I've treated candida agressively with diet and medical and natural

supplements for 6 years. I still can't eat a bite of fruit. Is Candida ever

the first symptom for people with Lyme?

Thanks for any suggestions,

[Guest guest]

Thanks Val,

My current doc seems to be afraid of IVs for some reason, maybe because

everything makes me worse. I don't have any room to get worse after losing 57

lbs that I didn't have to lose.

I was on Humira, then Enbrel.

Is is normal to have 4 months of getting worse before even seeing better days?

>

> , after being sick for 24.5 years, my LLMD started me very slowly. I

> did gradually increasing oral abx for six months. Levaquin made a huge

> difference but Doryx did not. I had some better days but overall, nothing

> to write home about. Then I went on IV Rocephin last May and my whole world

> improved. My first 2 - 3 months were up and down rough but I got better and

> better. Now, I've added IV Zithro. I'm having many, many days when I feel,

> if I can remember correctly, nearly normal. I am tired of the IV but

> terrified to go off it, too. While my regimen is very personalized to me,

> has your LLMD considered IV?

>

> What biologicals were you on?

>

> Val

>

> Posted by: " "

> <mailto:scottinfowlerville@...?Subject=%20Re%3A%20Do%20I%20give%20up%2

> 0on%20antibiotics%3F> scottinfowlerville@...

> <scottinfowlerville> scottinfowlerville

>

>

> Mon Mar 14, 2011 9:34 am (PDT)

>

>

> I started antibiotics last october after quitting bioligicals and

> methotrexate. The immunosuppressants made me worse.

> First was doxy 100mg doxy 3x weekly, then increased after a while to 200mg

> twice daily. I had a few good days but seemed to get worse overall.

> In January I was on 250mg zithromax every day for 2 weeks. This seemed to

> cause a herx immediately but I just continued to get worse, even after

> quitting for a couple weeks.

> In february we tried Levaquin 1/2 tab daily. Again I got another step worse

> and stayed that way.

> Currently I am starting Metronidazole alone and am getting worse again.

> I've never tested positive for Lyme on a test except for 2 positive bands

> and 4 indeterminate bands. My symptoms suggest lyme (wt loss, fatigue,

> endocrine problems, severe joint pain).

> My doctor is a very well respected LLMD and is discouraged- he's sending me

> to another LLMD (a lateral move that I suggest is to get rid of me).

> My bloodwork is improving: RF, Sed rate, CRP all have come down some after

> quitting biologicals. I do not feel better and my joint damage is

> progressing, however.

> Isn't it reasonable to expect more than 4 months on abs before improvement?

> Or is my disease just getting worse as we aren't treating properly?

> I've treated candida agressively with diet and medical and natural

> supplements for 6 years. I still can't eat a bite of fruit. Is Candida ever

> the first symptom for people with Lyme?

>

> Thanks for any suggestions,

>

>

>

>

>