Re: Shoemaker Protocol experience

[Guest guest]

Hello, everyone. I'm the Patti Schmidt discussed below, who wrote a

two-part article in Healthwatch way back in late 2002, early 2003

when Ritchie Shoemaker first diagnosed and treated me for Lyme

Disease. At the end of the article, I was doing well; people were

wondering if I stayed well.

The short answer is no. But I sure had a great standard of life

there for almost a year on his protocol-I was almost completely

normal, I'd say I was at 90 percent. That was the only time in the

last 20 years that I got significant improvement from a treatment. I

was feeling so strong and healthy, I left a 20-year marriage and

moved into an apartment of my own. My ex and I remain business

partners and friends.

But after 9 months to a year of leading an almost-normal life on oral

Amoxicillin and CSM, the antibiotic stopped working, and over the

next few months, despite a change or two of antibiotics, I relapsed

completely. Sometime during that relapse, I went off the CSM, too,

due to nausea. During the worst of my relapse, I tried the staph

phage lysate vaccine, but it didn't do much good, and I don't think I

finished it..... probably by then I'd already begun IV treatment at

the Lyme Disease Treatment Center in Hammonton, NJ.

April 19-June 14, 2004, Dr. Leonetti put me on IV Rocephin

treatment and it helped a bit. Relapsed during the six weeks after I

went off it, though, so they changed me to Rocephin and Vancomycin

for the second 56-day trial, which I began August 2. (In retrospect,

I wish I hadn't waited so long to go back on something.)

But Rocephin/Vancomycin was too hard on my liver, so I went on

several drug holidays to allow my liver enzymes to go back to normal.

Got encephalitis Aug. 16, a bad rash Aug. 26, and they they switched

me to IV Doxycycline and milk thistle 2-3 times a day Sept. 9, and

that's where I am today. The milk thistle is allowing me to continue

the Doxy, as long as I take it 2-3 times a day; otherwise, my liver

enzymes go back up to dangerous levels. I have roughly 20 days left

to go in this trial, I think.

Right now, I can't say this IV treatment is making a huge difference,

although my friends, family and boyfriend have noticed a slight

improvement. Dr. Leonetti tells me people improve even months after

IV treatment, but if I relapse after this 56-day trial, I don't think

it's wise to wait longer than about 2 weeks to go back on something.

Not sure what I'll do. Perhaps get a second opinion from another

local LLMD? Leonetti doesn't believe in/treat for cyst form or use

pulse therapy.... says research isn't there yet. But I like the

sound of some of those protocols, and the research makes sense to me.

Is anybody getting better on any of these protocols? Or are we all

just taking different drugs willy-nilly and hoping?????

I haven't been on the Shoemaker protocol for awhile, but I've been

thinking about trying CSM again. (It's just so difficult to take it

-or anything-4 times a day, though.)

I've spent the last year editing Dr. Shoemaker's latest book, Mold

Warriors, and am excited to tell you that it will be available at his

website (http://www.chronicneurotoxins.com) any day now. Of course,

Ritch says my current health situation is probably partly due to the

CoAgNegStaph again, so I have to get a culture done soon, and then

I'll see what he recommends to get rid of it. They opened up the

hallway in my apartment building recently and found some mold, but

before I could get a sample to send off, the cleaning guys cleaned it

up and wouldn't give me a sample.

Shoemaker's medical thinking on me recently is:

" Lyme unveiled your susceptibility, lowered your MSH. Low MSH let the staph

colonize. That kept you ill, called Lyme by your LMD. Meanwhile, the mold

is slowly poisoning you. And the coag neg staph is likely to be resistant

to all the antibiotics you've taken. Yes, Lyme was the cause of your 20-

year illness, until it was treated. Then Lyme became the initiator of a

predictable series of events. Look again at all the stuff in Mold Warriors.

" Take VCS online. Get a proper culture for the staph. Measure the

hyperacute changers of BP-VEGF, MMP9, C3a. Start CSM, with the rifampin

protocol to follow. Probably you'll end up on epo if the VEGF is low. "

So that's where I am. I'll get the tests Shoemaker recommends done,

see what they turn up. I think I'll also see another local LLMD who

treats the cyst form and at least see what he recommends

treatment-wise, then make a choice.

Any suggestions?

Thanks,

~~ Patti ~~

Patti Schmidt

> 1. Re: Anyone with experience of Shoemaker Protocol?

> From: jseaton357@...

> 2. Re: Anyone with experience of Shoemaker Protocol?

> From: " erik_johnson_96140 " <erikj6@...>

>

>

>Message: 1

> Date: Wed, 3 Nov 2004 08:52:34 EST

> From: jseaton357@...

>Subject: Re: Anyone with experience of Shoemaker Protocol?

>

>

>Shoemaker's an interesting cat. Very brilliant. Talk is a little bigger

>than his results though. If one asks me should they see him, I

>suggest if they

>have good insurance and don't mind flying in or travelling to see him, then

>sure. But don't expect miracles. I liked getting different perspective from

>him and seeing test results that other docs don't give, like VEGF and MSH,

>both of which were low in me. He will give you his VCS test which you will

>most likely fail and then prescribe cholestyramine (CSM) to get rid of them,

>and it may do a decent job of making you feel a little better after using it

>many weeks first though, and then you have to decide if you like

>using CSM the

>rest of your life. I found I did just as well doing heavy sauna rather than

>CSM. If you have staph infection in nose, Shoe will try to find this too and

>treat it, although now he can't use his staphage lysate any more, so that is

>one less reason I'd have to go to him if I could do it over again. He did

>not find the toxic forming coag neg staph in my nose for instance, which

>surprised him. He's a good guy and we could all use more docs like him.

>Definitely not greedy like too many other big name CFS guru and so

>for that he has my

>respect.

>

>I am not sure about the Patti who wrote that article on Shoe. I know I

>spoke to one who saw him and did better at first as he treated her for

>misdiagnosed lyme, but then needed more aggressive lyme treatment

>and this seems to be

>all too common stories from those who have seen him is he is in denial about

>prevalence of lyme and in fact ignored my IGeneX IgM which was pos, and made

>no comments on it which I think was him trying to blame my illness on mold

>only.

>

>

>In a message dated 11/3/2004 3:42:21 AM Eastern Standard Time,

> writes:

>

>I've read the files on Dr Shoemaker, and I was wondering if anyone

>had any experience good/bad of his protocol. If there has been a

>previous discussion on this can someone point me in the right

>direction of where the messages are, please. Also I read Patti

>Schmidt's story of seeing Dr Shoemaker on the immunesupport site,

>what was the outcome of the story? Did she stay well?

>

>

>

>Message: 2

> Date: Wed, 03 Nov 2004 17:01:24 -0000

> From: " erik_johnson_96140 " <erikj6@...>

>Subject: Re: Anyone with experience of Shoemaker Protocol?

>

>

>--

>> I am not sure about the Patti who wrote that article on Shoe. I

>>know I spoke to one who saw him and did better at first as he

>>treated her for misdiagnosed lyme, but then needed more aggressive

>>lyme treatment and this seems to be all too common stories from

>>those who have seen him is he is in denial about prevalence of lyme

>>and in fact ignored my IGeneX IgM which was pos, and made

>> no comments on it which I think was him trying to blame my illness

>> on mold only.

>>

>

>I don't get the impression that he is in denial about Lyme.

>Just that mold is a bigger mediator of peoples illnesses than they

>think.

>I'm not a patient and I'm not doing Dr Shoemakers protocols but he's

>the only doctor and one of the very few people that understands what

>I'm talking about when I say " mycotoxin avoidance " .

>-

[Guest guest]

Patti

I remember reading your story and this is sad and discouraging to

hear you relapsed. I just have a couple of comments:

Based on my experience and what I read from others, I think abx like

amoxicillin and rocephin work for about 3-6 months and then the lyme

mutates to CWD forms and becomes resistant. I relapsed from

rocephin. It is probably good that you are on Doxy now instead.

No one really knows, but I don't think being off abx for several

weeks is a big deal. In fact, your body may need it. Lyme

replicates pretty slowly.

With this said, I have battled lyme/cfs for over 2.5 years with ups

and mostly downs, so I have no answers. I've tried almost every abx,

different pulse regimes, rife machines etc but can't ever get much

traction.

Shoemaker may well be right that the lyme triggered other things that

are causing problems and it is good that he is exploring that, but if

he is saying that lyme is gone just by throwing abx at it, then I

think he is very wrong (maybe he isn't saying that?).

Kell

> Hello, everyone. I'm the Patti Schmidt discussed below, who wrote

a

> two-part article in Healthwatch way back in late 2002, early 2003

> when Ritchie Shoemaker first diagnosed and treated me for Lyme

> Disease. At the end of the article, I was doing well; people were

> wondering if I stayed well.

>

> The short answer is no. But I sure had a great standard of life

> there for almost a year on his protocol-I was almost completely

> normal, I'd say I was at 90 percent. That was the only time in the

> last 20 years that I got significant improvement from a treatment.

I

> was feeling so strong and healthy, I left a 20-year marriage and

> moved into an apartment of my own. My ex and I remain business

> partners and friends.

>

> But after 9 months to a year of leading an almost-normal life on

oral

> Amoxicillin and CSM, the antibiotic stopped working, and over the

> next few months, despite a change or two of antibiotics, I relapsed

> completely. Sometime during that relapse, I went off the CSM, too,

> due to nausea. During the worst of my relapse, I tried the staph

> phage lysate vaccine, but it didn't do much good, and I don't think

I

> finished it..... probably by then I'd already begun IV treatment at

> the Lyme Disease Treatment Center in Hammonton, NJ.

>

> April 19-June 14, 2004, Dr. Leonetti put me on IV Rocephin

> treatment and it helped a bit. Relapsed during the six weeks after

I

> went off it, though, so they changed me to Rocephin and Vancomycin

> for the second 56-day trial, which I began August 2. (In

retrospect,

> I wish I hadn't waited so long to go back on something.)

>

> But Rocephin/Vancomycin was too hard on my liver, so I went on

> several drug holidays to allow my liver enzymes to go back to

normal.

> Got encephalitis Aug. 16, a bad rash Aug. 26, and they they

switched

> me to IV Doxycycline and milk thistle 2-3 times a day Sept. 9, and

> that's where I am today. The milk thistle is allowing me to

continue

> the Doxy, as long as I take it 2-3 times a day; otherwise, my liver

> enzymes go back up to dangerous levels. I have roughly 20 days

left

> to go in this trial, I think.

>

> Right now, I can't say this IV treatment is making a huge

difference,

> although my friends, family and boyfriend have noticed a slight

> improvement. Dr. Leonetti tells me people improve even months

after

> IV treatment, but if I relapse after this 56-day trial, I don't

think

> it's wise to wait longer than about 2 weeks to go back on

something.

> Not sure what I'll do. Perhaps get a second opinion from another

> local LLMD? Leonetti doesn't believe in/treat for cyst form or use

> pulse therapy.... says research isn't there yet. But I like the

> sound of some of those protocols, and the research makes sense to

me.

>

> Is anybody getting better on any of these protocols? Or are we all

> just taking different drugs willy-nilly and hoping?????

>

> I haven't been on the Shoemaker protocol for awhile, but I've been

> thinking about trying CSM again. (It's just so difficult to take it

> -or anything-4 times a day, though.)

>

> I've spent the last year editing Dr. Shoemaker's latest book, Mold

> Warriors, and am excited to tell you that it will be available at

his

> website (http://www.chronicneurotoxins.com) any day now. Of

course,

> Ritch says my current health situation is probably partly due to

the

> CoAgNegStaph again, so I have to get a culture done soon, and then

> I'll see what he recommends to get rid of it. They opened up the

> hallway in my apartment building recently and found some mold, but

> before I could get a sample to send off, the cleaning guys cleaned

it

> up and wouldn't give me a sample.

>

> Shoemaker's medical thinking on me recently is:

>

> " Lyme unveiled your susceptibility, lowered your MSH. Low MSH let

the staph

> colonize. That kept you ill, called Lyme by your LMD. Meanwhile,

the mold

> is slowly poisoning you. And the coag neg staph is likely to be

resistant

> to all the antibiotics you've taken. Yes, Lyme was the cause of

your 20-

> year illness, until it was treated. Then Lyme became the initiator

of a

> predictable series of events. Look again at all the stuff in Mold

Warriors.

>

> " Take VCS online. Get a proper culture for the staph. Measure the

> hyperacute changers of BP-VEGF, MMP9, C3a. Start CSM, with the

rifampin

> protocol to follow. Probably you'll end up on epo if the VEGF is

low. "

>

> So that's where I am. I'll get the tests Shoemaker recommends

done,

> see what they turn up. I think I'll also see another local LLMD who

> treats the cyst form and at least see what he recommends

> treatment-wise, then make a choice.

>

> Any suggestions?

>

> Thanks,

>

> ~~ Patti ~~

>

> Patti Schmidt

>

>

>

>

> > 1. Re: Anyone with experience of Shoemaker Protocol?

> > From: jseaton357@a...

> > 2. Re: Anyone with experience of Shoemaker Protocol?

> > From: " erik_johnson_96140 " <erikj6@e...>

> >

> >

> >Message: 1

> > Date: Wed, 3 Nov 2004 08:52:34 EST

> > From: jseaton357@a...

> >Subject: Re: Anyone with experience of Shoemaker Protocol?

> >

> >

> >Shoemaker's an interesting cat. Very brilliant. Talk is a

little bigger

> >than his results though. If one asks me should they see him, I

> >suggest if they

> >have good insurance and don't mind flying in or travelling to see

him, then

> >sure. But don't expect miracles. I liked getting different

perspective from

> >him and seeing test results that other docs don't give, like VEGF

and MSH,

> >both of which were low in me. He will give you his VCS test

which you will

> >most likely fail and then prescribe cholestyramine (CSM) to get

rid of them,

> >and it may do a decent job of making you feel a little better

after using it

> >many weeks first though, and then you have to decide if you like

> >using CSM the

> >rest of your life. I found I did just as well doing heavy sauna

rather than

> >CSM. If you have staph infection in nose, Shoe will try to find

this too and

> >treat it, although now he can't use his staphage lysate any more,

so that is

> >one less reason I'd have to go to him if I could do it over

again. He did

> >not find the toxic forming coag neg staph in my nose for

instance, which

> >surprised him. He's a good guy and we could all use more docs

like him.

> >Definitely not greedy like too many other big name CFS guru and

so

> >for that he has my

> >respect.

> >

> >I am not sure about the Patti who wrote that article on Shoe. I

know I

> >spoke to one who saw him and did better at first as he treated her

for

> >misdiagnosed lyme, but then needed more aggressive lyme treatment

> >and this seems to be

> >all too common stories from those who have seen him is he is in

denial about

> >prevalence of lyme and in fact ignored my IGeneX IgM which was

pos, and made

> >no comments on it which I think was him trying to blame my illness

on mold

> >only.

> >

> >

> >In a message dated 11/3/2004 3:42:21 AM Eastern Standard Time,

> > writes:

> >

> >I've read the files on Dr Shoemaker, and I was wondering if anyone

> >had any experience good/bad of his protocol. If there has been a

> >previous discussion on this can someone point me in the right

> >direction of where the messages are, please. Also I read Patti

> >Schmidt's story of seeing Dr Shoemaker on the immunesupport site,

> >what was the outcome of the story? Did she stay well?

> >

> >

> >

> >Message: 2

> > Date: Wed, 03 Nov 2004 17:01:24 -0000

> > From: " erik_johnson_96140 " <erikj6@e...>

> >Subject: Re: Anyone with experience of Shoemaker Protocol?

> >

> >

> >--

> >> I am not sure about the Patti who wrote that article on Shoe. I

> >>know I spoke to one who saw him and did better at first as he

> >>treated her for misdiagnosed lyme, but then needed more aggressive

> >>lyme treatment and this seems to be all too common stories from

> >>those who have seen him is he is in denial about prevalence of

lyme

> >>and in fact ignored my IGeneX IgM which was pos, and made

> >> no comments on it which I think was him trying to blame my

illness

> >> on mold only.

> >>

> >

> >I don't get the impression that he is in denial about Lyme.

> >Just that mold is a bigger mediator of peoples illnesses than they

> >think.

> >I'm not a patient and I'm not doing Dr Shoemakers protocols but

he's

> >the only doctor and one of the very few people that understands

what

> >I'm talking about when I say " mycotoxin avoidance " .

> >-

[Guest guest]

> Hello, everyone. > Is anybody getting better on any of these

protocols? >

> Any suggestions?

>

> Thanks,

>

> ~~ Patti ~~

Hi Patti,

I suggest trying the Marshall Protocol " MP " before trying Shomaker's

protocol again, that way you can compare the reults you get between

them. I am on the MP and like the results so far.

Details at: www.marshallprotocol.com

Al

[Guest guest]

I think I'll get that book. Desperation Medicine was a decent read but not

one I put on a high priority list for anyone here as it basicly praises CSM

and explains significance of neurotoxins but that's about it.

I was wondering why they opened up the hallway in the first place--did the

reason have to do with trying to find mold? For every story like yours where

they happened to actually get in there and found mold, imagine all the hidden

stories of people on this list that have tons of mold all around them and

have no idea b/c these areas are never opened. Scary. Living in a tent ain't

such a bad idea.

Patti, I think your IV treatment went exactly as I predicted if you recall

and that is why I never recommend anyone go to a LLMD and get a port put in

them. I also do recommend cyst busting drugs as possibly very important, both

Flagyl and tinidazole, and think treating assumed babesia may be a good idea

too (what I'm doing right now for 45 days, and yes I feel a little better

half way through here). BW.

In a message dated 11/5/2004 1:44:46 AM Eastern Standard Time,

writes:

I've spent the last year editing Dr. Shoemaker's latest book, Mold

Warriors, and am excited to tell you that it will be available at his

website (http://www.chronicneurotoxins.com) any day now. Of course,

Ritch says my current health situation is probably partly due to the

CoAgNegStaph again, so I have to get a culture done soon, and then

I'll see what he recommends to get rid of it. They opened up the

hallway in my apartment building recently and found some mold, but

before I could get a sample to send off, the cleaning guys cleaned it

up and wouldn't give me a sample.

[Guest guest]

Kell, how long were you on it for it to raise your liver enzymes? I don't

think it is a drug you want to use for much more than a week. I always did

Flagyl myself for up to 8 days b/c I just could not tollerate it any more after

7 days. But even if I could tollerate it I personally would never do more

than say 10 days at a time. Long term use can cause neuroopathy too, so signs

for that should be noticed. Taking another abx like minocycline or rifing

along with this pulsing period may be very important, but being that amoebae

itself could be inhabiting us and making us feel worse, it may be a good drug

for many with CFS as it might be doing more than opening up cyst forms of

bacteria.

In a message dated 11/5/2004 9:41:06 AM Eastern Standard Time,

writes:

I just had to say the following: I don't disagree about trying cyst

busters, but if you have liver problems with doxy (I think you

mentioned this) then you will potentially have really big problems

with flagyl. It is the one drug that would send my liver enzymes

soaring and is known for high toxicity.

Pulsing is probably a good idea, and if you can afford it, Tinidazole

might be a better choice (I've never tried it but it seems many

prefer it).

[Guest guest]

Patti

I just had to say the following: I don't disagree about trying cyst

busters, but if you have liver problems with doxy (I think you

mentioned this) then you will potentially have really big problems

with flagyl. It is the one drug that would send my liver enzymes

soaring and is known for high toxicity.

Pulsing is probably a good idea, and if you can afford it, Tinidazole

might be a better choice (I've never tried it but it seems many

prefer it).

Kell

>

> I think I'll get that book. Desperation Medicine was a decent

read but not

> one I put on a high priority list for anyone here as it basicly

praises CSM

> and explains significance of neurotoxins but that's about it.

>

> I was wondering why they opened up the hallway in the first place--

did the

> reason have to do with trying to find mold? For every story like

yours where

> they happened to actually get in there and found mold, imagine all

the hidden

> stories of people on this list that have tons of mold all around

them and

> have no idea b/c these areas are never opened. Scary. Living in

a tent ain't

> such a bad idea.

>

> Patti, I think your IV treatment went exactly as I predicted if you

recall

> and that is why I never recommend anyone go to a LLMD and get a

port put in

> them. I also do recommend cyst busting drugs as possibly very

important, both

> Flagyl and tinidazole, and think treating assumed babesia may be a

good idea

> too (what I'm doing right now for 45 days, and yes I feel a little

better

> half way through here). BW.

>

>

> In a message dated 11/5/2004 1:44:46 AM Eastern Standard Time,

> writes:

>

> I've spent the last year editing Dr. Shoemaker's latest book, Mold

> Warriors, and am excited to tell you that it will be available at

his

> website (http://www.chronicneurotoxins.com) any day now. Of

course,

> Ritch says my current health situation is probably partly due to

the

> CoAgNegStaph again, so I have to get a culture done soon, and then

> I'll see what he recommends to get rid of it. They opened up the

> hallway in my apartment building recently and found some mold, but

> before I could get a sample to send off, the cleaning guys cleaned

it

> up and wouldn't give me a sample.

>

>

>

>

>

>

>

[Guest guest]

Back when I was too naive and brain dead to understand about abx, I

took flagyl 5 days a week for about 5 weeks (along with some other

abx). I hope no one does this because my story is lots worse than

just high liver enzymes (too painful to recall here). The LLMD that

Rx this for me changed his protocol (5 days in a month instead of a

week) AFTER my experience.

I'm still pretty brain dead but not enough that I'll take flagyl

again, because I can't tolerate it. I may try tinidazole like I try

everything else (out of desperation). If I do, I'll start with

fractions of a pill and work my way up, but I don't take any abx more

than 3 days in a row anymore (or 3 days in a week for that matter).

I hate all these nasty drugs but I get even worse without them.

Kell

>

> Kell, how long were you on it for it to raise your liver enzymes?

I don't

> think it is a drug you want to use for much more than a week. I

always did

> Flagyl myself for up to 8 days b/c I just could not tollerate it

any more after

> 7 days. But even if I could tollerate it I personally would never

do more

> than say 10 days at a time. Long term use can cause neuroopathy

too, so signs

> for that should be noticed. Taking another abx like minocycline

or rifing

> along with this pulsing period may be very important, but being

that amoebae

> itself could be inhabiting us and making us feel worse, it may be

a good drug

> for many with CFS as it might be doing more than opening up cyst

forms of

> bacteria.

>

>

> In a message dated 11/5/2004 9:41:06 AM Eastern Standard Time,

> writes:

>

> I just had to say the following: I don't disagree about trying

cyst

> busters, but if you have liver problems with doxy (I think you

> mentioned this) then you will potentially have really big problems

> with flagyl. It is the one drug that would send my liver enzymes

> soaring and is known for high toxicity.

>

> Pulsing is probably a good idea, and if you can afford it,

Tinidazole

> might be a better choice (I've never tried it but it seems many

> prefer it).

>

>

>

>

>

>

>