your opinion on CEFUROXIME, on my Dr, other Dr

September 3, 2009

Quick review of my case: I have Lyme now for the fourth time. Each time,

my main symptom is stiff/sore knees, and each time except this last time,

the symptoms and the disease went away after using Doxyclyclene. This

time, because the Doxy didn't help, I was sent to a specialist.

Up to date: After waiting weeks to see the specialist, during which

time my knee swelled worse and was more painful, but then finally started to

get better, although not perfect, I went to one. He did not take the time

to ask my history, but only read what my last doctor wrote - and that

doctor apparently did not even write that I had had Lyme and seen other doctors

before. I had to kind of force most of my history on him and hope he was

listening. When I told him my main symptom was my knee, he wiggled it

around and then announced that it was not due to Lyme: it was either gout,

pseudo-gout, or crystal induced arthropathy. He said he could not test for

one of them (the last?) because he would have needed to withdraw fluid from

my swollen knee, which was now not swollen enough! (Too bad he couldn't have

seen me a week or two earlier!) He said it was most likely pseudo-gout,

and prescribed a medication called Colchicine, which gave me the worst case

of diarrhea you could imagine - much more incapacitating than having a bad

knee. I read the booklet on it and it said it was for the treatment of

gout, which the doctor had said was quite different and would respond to

different treatment than pseudo-gout. Oh, and when I said to him (before

trying

the medication), " If the knee pain is not connected to Lyme, then why is

it that the other three times I've had Lyme and I've had medication for

Lyme, the knee pain and swelling have gone away? " he said it was coincidence.

I asked if what was wrong with my knee might not be from current Lyme but

could be a temporary or permanent effect of having Lyme affect it so much in

the past. (I've been to the point when I couldn't walk.) He said no,

that it was a hereditary condition. He did write out a form to test my blood

for all sorts of things, including Lyme.

Now, a week later, I find that the Lyme test was positive. (Nothing

else was positive, although as I mentioned he couldn't test for everything.)

I ask the nurse to ask the doctor if he now thinks my knee pain could be

because of the Lyme. She says it could be. She says the doctor wants to

prescribe Cefuroxime Axetil to treat the Lyme. I asked her to ask him what

makes this drug different from Doxycyclene - why this one might work while

that one didn't. She says " It's just another one to try. "

You can see why I don't have much confidence in this doctor. Or IS

treating advanced Lyme just a case of trial and error? I asked my husband

whether I should trust this doctor and begin treatment right away, or wait

six weeks (while my life is semi- on hold because of my knee) to see another

specialist. He pointed out that it couldn't hurt to try this medication,

and it might work. I agreed, and just came home with the prescription.

Meanwhile, it would be very helpful to me to hear about your

experiences with ANY drug after Doxycyclene - especially SUCCESS stories with

any

drug, and especially ANY stories about Cefuroxime. I also VERY much would

like to hear about your experiences with (or word of mouth tales about)

infectious disease specialists who have been very successful with advanced

cases

of Lyme. I am very willing to travel, but will give my location as a base

point: I am in Albany county, New York. Other counties nearby include

Greene, Dutchess, Columbia, Schoharie, Montgomery, Schenectady, Rensselaer,

Otsego, and Saratoga. If there are any very good doctors in any of these

counties, I'll start there. Otherwise, I'll go farther.

Please - I would appreciate any advice regarding staying with this

doctor, taking this medication, and finding a second doctor.

Thank you SO much!

September 3, 2009

You need a Lyme-literate doctor. In fact, you needed one years ago.

How quickly did you catch those earlier cases of Lyme? Doxy only works

if you get started within a few weeks of the bite. The spirochete can

disperse into the tissues in just a few weeks, to a point where it's

well beyond the reach of the doxy. The symptoms may recede; but you've

still got Lyme, and it will return over time.

I'm on Ceftin (cefuroxime) right now. It is indeed a better

alternative than doxy -- a second-generation cephalosporin that's

very effective against the Lyme spirochete. However, if you've had

Lyme for a while, odds are good that you've got all three forms of the

disease: spirochete, cell-wall-deficient (CWD or L-form) and the cyst.

Each form responds to different antibiotics; and effective treatment

requires that you take a cluster of antibiotics that will hit all

three at once, so there's nowhere for them to hide. Thus: I'm

currently taking Ceftin with Zithromax for the L-forms and Flagyl for

the cysts, plus assorted anti-fungals to keep the antibiotics

themselves from screwing up the rest of my system.

You will also need to be on antibiotics for months -- maybe years. A

few weeks doesn't cut it.

Your doctor's behaving pretty normally for a doctor who doesn't know

much more than the basics about Lyme. But he is not going to cure you,

not after four exposures.

Let us know what city you're in, and someone here can contact you off-

list with a suggestion for a better doc.

Sara

On Sep 3, 2009, at 5:07 PM, smilindove@... wrote:

> Quick review of my case: I have Lyme now for the fourth time.

> Each time,

> my main symptom is stiff/sore knees, and each time except this last

> time,

> the symptoms and the disease went away after using Doxyclyclene.

> This

> time, because the Doxy didn't help, I was sent to a specialist.

> Up to date: After waiting weeks to see the specialist, during

> which

> time my knee swelled worse and was more painful, but then finally

> started to

> get better, although not perfect, I went to one. He did not take

> the time

> to ask my history, but only read what my last doctor wrote - and that

> doctor apparently did not even write that I had had Lyme and seen

> other doctors

> before. I had to kind of force most of my history on him and hope

> he was

> listening. When I told him my main symptom was my knee, he wiggled

> it

> around and then announced that it was not due to Lyme: it was

> either gout,

> pseudo-gout, or crystal induced arthropathy. He said he could not

> test for

> one of them (the last?) because he would have needed to withdraw

> fluid from

> my swollen knee, which was now not swollen enough! (Too bad he

> couldn't have

> seen me a week or two earlier!) He said it was most likely pseudo-

> gout,

> and prescribed a medication called Colchicine, which gave me the

> worst case

> of diarrhea you could imagine - much more incapacitating than

> having a bad

> knee. I read the booklet on it and it said it was for the

> treatment of

> gout, which the doctor had said was quite different and would

> respond to

> different treatment than pseudo-gout. Oh, and when I said to him

> (before trying

> the medication), " If the knee pain is not connected to Lyme, then

> why is

> it that the other three times I've had Lyme and I've had medication

> for

> Lyme, the knee pain and swelling have gone away? " he said it was

> coincidence.

> I asked if what was wrong with my knee might not be from current

> Lyme but

> could be a temporary or permanent effect of having Lyme affect it

> so much in

> the past. (I've been to the point when I couldn't walk.) He said

> no,

> that it was a hereditary condition. He did write out a form to

> test my blood

> for all sorts of things, including Lyme.

> Now, a week later, I find that the Lyme test was positive.

> (Nothing

> else was positive, although as I mentioned he couldn't test for

> everything.)

> I ask the nurse to ask the doctor if he now thinks my knee pain

> could be

> because of the Lyme. She says it could be. She says the doctor

> wants to

> prescribe Cefuroxime Axetil to treat the Lyme. I asked her to ask

> him what

> makes this drug different from Doxycyclene - why this one might

> work while

> that one didn't. She says " It's just another one to try. "

> You can see why I don't have much confidence in this doctor. Or

> IS

> treating advanced Lyme just a case of trial and error? I asked my

> husband

> whether I should trust this doctor and begin treatment right away,

> or wait

> six weeks (while my life is semi- on hold because of my knee) to

> see another

> specialist. He pointed out that it couldn't hurt to try this

> medication,

> and it might work. I agreed, and just came home with the

> prescription.

> Meanwhile, it would be very helpful to me to hear about your

> experiences with ANY drug after Doxycyclene - especially SUCCESS

> stories with any

> drug, and especially ANY stories about Cefuroxime. I also VERY

> much would

> like to hear about your experiences with (or word of mouth tales

> about)

> infectious disease specialists who have been very successful with

> advanced cases

> of Lyme. I am very willing to travel, but will give my location as

> a base

> point: I am in Albany county, New York. Other counties nearby

> include

> Greene, Dutchess, Columbia, Schoharie, Montgomery, Schenectady,

> Rensselaer,

> Otsego, and Saratoga. If there are any very good doctors in any of

> these

> counties, I'll start there. Otherwise, I'll go farther.

> Please - I would appreciate any advice regarding staying with this

> doctor, taking this medication, and finding a second doctor.

> Thank you SO much!

>

September 4, 2009

In a message dated 9/3/2009 11:45:19 P.M. Eastern Daylight Time,

srobinson@... writes: