Re: Lupus, polymyocitis newbie

September 10, 2009

Rick, I have not heard of Alinia, but my holistic doctors are doing a

similar thing with me with herbs and supplements and not the

prescription antibiotic. I have a parasite also and am taking an

antiparasite herb mixture. They also tested me for heavy metals and

many other things my body is supposed to be making. My lead was very

high, which they think could be part of the culprit and they want me

to start chelation. I'm taking many supplements (things I was

deficient in) and am on a carb-free (for candida), gluten-free, dairy-

free (based on food allergy tests), mostly organic diet temporarily to

'clean' my system. I am still on antibiotics and plaquenil

(recommended by my rheumatologist which I've taken for many years with

some positive results). I have to say, since I've been on the pills

and diet, I've felt amazing. I almost feel like my 'old' self. More

energy, brain power, happy; mostly no pain or stiffness, and

definitely no fevers!

On Sep 10, 2009, at 11:30 AM, EAN_29209 wrote:

> Hello. I am new to this forum. My wife is 54 and recently (June of

> this year) diagnosed with Lupus and polymyocitis. She has loist 80

> lbs in that time period and had the fever, malaise, weakness and

> pain that accompanies the disease. We have been through the

> beginning stages of Dr. Brown's " 5 year " cycle of seeing an initial

> Rheumatologist who in turn referred us to the, very well lauded,

> MUSC hospital Rheum. Department in ton, SC. This initial

> visit consisted of 20 minutes with a rookie doctor who spent the

> whole time taking " another " verbal history for the purpose of data

> entry. This, despite the fact that they had all of my wife's records

> (already sent to them by the referring rheumy, not to mention all

> the records we provided (and I have them all)). We were then

> privilaged with a 2-3 minute appearance of the " real " doctor (who

> apparently took time to come down off his cross) who wasted most of

> his time in a clinincal rounds session with the rookie. They did

> nothing, sent us home with no changes and orders for more labs. We

> were to return in 3 weeks.

>

> The second session was much better because we presented him (the

> rookie) a list of questions that we told him we wanted answered

> before we left. This time, he actually listened and answered all of

> our questions. It was decided that my wife () would remain on

> 40 mg Prednisone, drop the Plaquenil (jesus said taking it was like

> spitting in the wind) and started her on Immuran. Ordered more labs

> and another CT of her chest for next visit and we were off to come

> back again in four more weeks. By the time we got home we had

> already thought of a few items that were brought up during this

> session but never concluded as well as a few new questions. I faxed

> them down the next day (that was roughly three weeks ago and have

> yet to get a response. Even after four phone calls to confirm

> receipt (they said they never got the original) and a resend.

> Needless to say, we have already made an appointment with another

> University Rheumy dept here in Columbia but are having to wait for

> November as that is the earliest they could get us in. We made this

> one immediatly after the initial visit at MUSC.

>

> We had an initial visit with a Family Practice/Naturalist doctor

> yesterday regarding the setting up of on the AP. He was a

> very nice man but was not engaging and asked no questions and

> offered no comments or insight as to his experience with previous

> patients, the Protocol, etc. When asked, he did say that he had

> overseen a case before but it had been in awhile ago (?) and mumbled

> something about them never coming back. When asked how this

> experience went he did not readily respond. I told him up front that

> we were interested in Dr. Brown's protocol. I had already emailed

> him during my preliminary investigations and he had confirmed that

> he would be willing to administer and oversee the treatment. I

> reminded him of this and he said that he remembered. We provided him

> a copy of the FAQ info. He was very forthright with his agreement to

> take on with the protocol. He mentioned that he was

> currently recommending a new antibiotic (to us at least) called

> Alinia, instead of the minocycline. He told us that this drug took

> care of parasitic as well as bacterial infections ... including

> mycoplasma's. [i looked it up when I got home and it is a synthetic

> antiprotozoal agent used to address Giardia and Cryptosporidium

> infections.] As a holistic, family practice physician, he felt that

> a lot of people suffered from undetected, parasitic infections that

> needed to be addressed as well as any other issues. He left it up to

> us if we wanted to go that route or stick to the protocol and we, of

> course, went with the latter. So, the question now is have you heard

> of using this type agent and is it recommended?

>

> He gave us a script for 1.) Minocycline hcl, 100 mg tabs. To be

> taken as 1/2 pill M,W,F for the first week and then a full pill

> thereafter, and 2.) Zithromax, 250 mg, one on T and Th. We are to

> await the results of all the labs prior to starting. 5 refills on

> everything.

>

> Labs: Lyme IgM & IgG, CMV IgM & IgG, Chlamydia IgM & IgG, Mycoplasma

> IgM & IgG, EBV IgM & IgG, EBV nuclear antigen. I am faxing him a

> request for Anti-DNAse B for strep, Streptozyme test, and test for

> Celiac Disease and also his consideration for Metal toxicity, leaky

> gut test. I am afraid that he had us in and out so quickly that we

> forgot to ask about these.

>

> He did not require a follow-up appointment opting to just wait for

> the labs to come back and go from there.

>

> 's PCP is considering taking her on for this treatment but

> was going to call us after reading the FAQ information. We saw him

> about a week prior to seeing this doc for a routine followup to

> bring him up to speed as to what had been going on since his last

> visit. He told us that he had never heard of the protocol or Dr.

> Brown and was honest about being hesitant to get involved. However,

> he has been a true professional (Internal Medicine) and we both like

> him. He said that he would call us back after a week to ten days. As

> he did not seem too interested, we went with the new doc's visit in

> order to get started asap. We ... I am very anxious to not let this

> condition go on any longer untreated. So I guess we'll have to make

> the best of the current situation of a not-to-enthusiastic physician

> who is willing to prescribe and oversee the protocol (although

> distant, 130 miles from home) over a physician that probably won't

> ok it but has a much better demeanor and is right her in town.

>

> We are in the process of finding from where we want to obtain our

> " naturals " and will be getting those asap, prior to starting the

> protocol.

>

> Have any of you heard of Alinia? I had emailed this all to Ethel

> earlier and she said it was not appropriate but I just wanted to put

> this out there for everyone to be aware of and to see if anyone else

> had been offered it. Also, I am very eager to hear feedback from any

> and all of you on what light your personal experiences can shed on

> our situation. I realize that we have just started on down this road

> but I would like to know about and avoid as many pitfalls as possible.

>

> Thanks,

> Rick

>

September 10, 2009

Well rick, Your story is all too familiar. I don't know about how the rest of

the group was treated but I, pretty much, had similar responses. I also was

offered a bunch of toxic meds and prednisone was the primary one. Prednisone is

an immune suppressant. Prednisone shuts down the bodies response to invading

microorganisms. Whether they be bacterial, viral, or fungal. Why on God's good

earth would a person want to shut down the system that is there to protect us is

beyond me? This is the only treatment that the Rheumatology school can come up

with. They are still treating with 1930's protocols and have not advanced one

iota. If you strongly believe that the disease is of infectious origin, then

why don't you seek out an infectious disease doctor. He/she knows about GERMS.

I never heard of the antibiotic the naturalist prescribed. Minocin (be sure you

get the doctor to write " Brand Only " ---no generics. They may contain

fillers you don't need! Remember, do not ask for minocycline, ask for

Minocin. IMO, I would stay with your PCP and take the antibiotic (Minocin).

Taking zithromycin twice a week is good also. I take zith every 10th day

according to Marshall Protocol. The main think is to get those antibiotics in as

soon as possible. My first cousin was filled with steroids and it killed him.

This was back in the 1940's and they have not progressed. if you can't find an

AP doc, go to the one that will give you the antibiotics. We are all pretty

much on our own. You will have to become your own physician and learn

everything. Keep writing to this site. The people here are very knowledgeable

and will not steer you in the wrong direction. Welcome to the craziness we all

have gone and are still going through trying to make these docs understand that

we are in a fight for our lives. Don't give up! Fight harder! I love your

spirit. Hope

others have some solid leads for you. Good luck, Dolores & Mike

From: EAN_29209 <enavarro1@...>

Subject: rheumatic Lupus, polymyocitis newbie

rheumatic

Date: Thursday, September 10, 2009, 11:30 AM

Hello. I am new to this forum. My wife is 54 and recently (June of this year)

diagnosed with Lupus and polymyocitis. She has loist 80 lbs in that time period

and had the fever, malaise, weakness and pain that accompanies the disease. We

have been through the beginning stages of Dr. Brown's " 5 year " cycle of seeing

an initial Rheumatologist who in turn referred us to the, very well lauded, MUSC

hospital Rheum. Department in ton, SC. This initial visit consisted of 20

minutes with a rookie doctor who spent the whole time taking " another " verbal

history for the purpose of data entry. This, despite the fact that they had all

of my wife's records (already sent to them by the referring rheumy, not to

mention all the records we provided (and I have them all)). We were then

privilaged with a 2-3 minute appearance of the " real " doctor (who apparently

took time to come down off his cross) who wasted most of his time in a clinincal

rounds session with the

rookie. They did nothing, sent us home with no changes and orders for more

labs. We were to return in 3 weeks.

The second session was much better because we presented him (the rookie) a list

of questions that we told him we wanted answered before we left. This time, he

actually listened and answered all of our questions. It was decided that my wife

() would remain on 40 mg Prednisone, drop the Plaquenil (jesus said

taking it was like spitting in the wind) and started her on Immuran. Ordered

more labs and another CT of her chest for next visit and we were off to come

back again in four more weeks. By the time we got home we had already thought of

a few items that were brought up during this session but never concluded as well

as a few new questions. I faxed them down the next day (that was roughly three

weeks ago and have yet to get a response. Even after four phone calls to confirm

receipt (they said they never got the original) and a resend. Needless to say,

we have already made an appointment with another University Rheumy dept here in

Columbia but are

having to wait for November as that is the earliest they could get us in. We

made this one immediatly after the initial visit at MUSC.

We had an initial visit with a Family Practice/Naturalist doctor yesterday

regarding the setting up of on the AP. He was a very nice man but was

not engaging and asked no questions and offered no comments or insight as to his

experience with previous patients, the Protocol, etc. When asked, he did say

that he had overseen a case before but it had been in awhile ago (?) and mumbled

something about them never coming back. When asked how this experience went he

did not readily respond. I told him up front that we were interested in Dr.

Brown's protocol. I had already emailed him during my preliminary investigations

and he had confirmed that he would be willing to administer and oversee the

treatment. I reminded him of this and he said that he remembered. We provided

him a copy of the FAQ info. He was very forthright with his agreement to take

on with the protocol. He mentioned that he was currently recommending a

new antibiotic (to us at

least) called Alinia, instead of the minocycline. He told us that this drug

took care of parasitic as well as bacterial infections ... including

mycoplasma's. [i looked it up when I got home and it is a synthetic

antiprotozoal agent used to address Giardia and Cryptosporidium infections.] As

a holistic, family practice physician, he felt that a lot of people suffered

from undetected, parasitic infections that needed to be addressed as well as any

other issues. He left it up to us if we wanted to go that route or stick to the

protocol and we, of course, went with the latter. So, the question now is have

you heard of using this type agent and is it recommended?

He gave us a script for 1.) Minocycline hcl, 100 mg tabs. To be taken as 1/2

pill M,W,F for the first week and then a full pill thereafter, and 2.)

Zithromax, 250 mg, one on T and Th. We are to await the results of all the labs

prior to starting. 5 refills on everything.

Labs: Lyme IgM & IgG, CMV IgM & IgG, Chlamydia IgM & IgG, Mycoplasma IgM & IgG,

EBV IgM & IgG, EBV nuclear antigen. I am faxing him a request for Anti-DNAse B

for strep, Streptozyme test, and test for Celiac Disease and also his

consideration for Metal toxicity, leaky gut test. I am afraid that he had us in

and out so quickly that we forgot to ask about these.

He did not require a follow-up appointment opting to just wait for the labs to

come back and go from there.

's PCP is considering taking her on for this treatment but was going to

call us after reading the FAQ information. We saw him about a week prior to

seeing this doc for a routine followup to bring him up to speed as to what had

been going on since his last visit. He told us that he had never heard of the

protocol or Dr. Brown and was honest about being hesitant to get involved.

However, he has been a true professional (Internal Medicine) and we both like

him. He said that he would call us back after a week to ten days. As he did not

seem too interested, we went with the new doc's visit in order to get started

asap. We ... I am very anxious to not let this condition go on any longer

untreated. So I guess we'll have to make the best of the current situation of a

not-to-enthusiastic physician who is willing to prescribe and oversee the

protocol (although distant, 130 miles from home) over a physician that probably

won't ok it but has a much better

demeanor and is right her in town.

We are in the process of finding from where we want to obtain our " naturals " and

will be getting those asap, prior to starting the protocol.

Have any of you heard of Alinia? I had emailed this all to Ethel earlier and she

said it was not appropriate but I just wanted to put this out there for everyone

to be aware of and to see if anyone else had been offered it. Also, I am very

eager to hear feedback from any and all of you on what light your personal

experiences can shed on our situation. I realize that we have just started on

down this road but I would like to know about and avoid as many pitfalls as

possible.

Thanks,

Rick

September 10, 2009

I meant to say that I also have Lupus and Sjogren's Syndrome.

On Sep 10, 2009, at 12:06 PM, Brady wrote:

> Rick, I have not heard of Alinia, but my holistic doctors are doing a

> similar thing with me with herbs and supplements and not the

> prescription antibiotic. I have a parasite also and am taking an

> antiparasite herb mixture. They also tested me for heavy metals and

> many other things my body is supposed to be making. My lead was very

> high, which they think could be part of the culprit and they want me

> to start chelation. I'm taking many supplements (things I was

> deficient in) and am on a carb-free (for candida), gluten-free, dairy-

> free (based on food allergy tests), mostly organic diet temporarily to

> 'clean' my system. I am still on antibiotics and plaquenil

> (recommended by my rheumatologist which I've taken for many years with

> some positive results). I have to say, since I've been on the pills

> and diet, I've felt amazing. I almost feel like my 'old' self. More

> energy, brain power, happy; mostly no pain or stiffness, and

> definitely no fevers!

>

> On Sep 10, 2009, at 11:30 AM, EAN_29209 wrote:

>

> > Hello. I am new to this forum. My wife is 54 and recently (June of

> > this year) diagnosed with Lupus and polymyocitis. She has loist 80

> > lbs in that time period and had the fever, malaise, weakness and

> > pain that accompanies the disease. We have been through the

> > beginning stages of Dr. Brown's " 5 year " cycle of seeing an initial

> > Rheumatologist who in turn referred us to the, very well lauded,

> > MUSC hospital Rheum. Department in ton, SC. This initial

> > visit consisted of 20 minutes with a rookie doctor who spent the

> > whole time taking " another " verbal history for the purpose of data

> > entry. This, despite the fact that they had all of my wife's records

> > (already sent to them by the referring rheumy, not to mention all

> > the records we provided (and I have them all)). We were then

> > privilaged with a 2-3 minute appearance of the " real " doctor (who

> > apparently took time to come down off his cross) who wasted most of

> > his time in a clinincal rounds session with the rookie. They did

> > nothing, sent us home with no changes and orders for more labs. We

> > were to return in 3 weeks.

> >

> > The second session was much better because we presented him (the

> > rookie) a list of questions that we told him we wanted answered

> > before we left. This time, he actually listened and answered all of

> > our questions. It was decided that my wife () would remain on

> > 40 mg Prednisone, drop the Plaquenil (jesus said taking it was like

> > spitting in the wind) and started her on Immuran. Ordered more labs

> > and another CT of her chest for next visit and we were off to come

> > back again in four more weeks. By the time we got home we had

> > already thought of a few items that were brought up during this

> > session but never concluded as well as a few new questions. I faxed

> > them down the next day (that was roughly three weeks ago and have

> > yet to get a response. Even after four phone calls to confirm

> > receipt (they said they never got the original) and a resend.

> > Needless to say, we have already made an appointment with another

> > University Rheumy dept here in Columbia but are having to wait for

> > November as that is the earliest they could get us in. We made this

> > one immediatly after the initial visit at MUSC.

> >

> > We had an initial visit with a Family Practice/Naturalist doctor

> > yesterday regarding the setting up of on the AP. He was a

> > very nice man but was not engaging and asked no questions and

> > offered no comments or insight as to his experience with previous

> > patients, the Protocol, etc. When asked, he did say that he had

> > overseen a case before but it had been in awhile ago (?) and mumbled

> > something about them never coming back. When asked how this

> > experience went he did not readily respond. I told him up front that

> > we were interested in Dr. Brown's protocol. I had already emailed

> > him during my preliminary investigations and he had confirmed that

> > he would be willing to administer and oversee the treatment. I

> > reminded him of this and he said that he remembered. We provided him

> > a copy of the FAQ info. He was very forthright with his agreement to

> > take on with the protocol. He mentioned that he was

> > currently recommending a new antibiotic (to us at least) called

> > Alinia, instead of the minocycline. He told us that this drug took

> > care of parasitic as well as bacterial infections ... including

> > mycoplasma's. [i looked it up when I got home and it is a synthetic

> > antiprotozoal agent used to address Giardia and Cryptosporidium

> > infections.] As a holistic, family practice physician, he felt that

> > a lot of people suffered from undetected, parasitic infections that

> > needed to be addressed as well as any other issues. He left it up to

> > us if we wanted to go that route or stick to the protocol and we, of

> > course, went with the latter. So, the question now is have you heard

> > of using this type agent and is it recommended?

> >

> > He gave us a script for 1.) Minocycline hcl, 100 mg tabs. To be

> > taken as 1/2 pill M,W,F for the first week and then a full pill

> > thereafter, and 2.) Zithromax, 250 mg, one on T and Th. We are to

> > await the results of all the labs prior to starting. 5 refills on

> > everything.

> >

> > Labs: Lyme IgM & IgG, CMV IgM & IgG, Chlamydia IgM & IgG, Mycoplasma

> > IgM & IgG, EBV IgM & IgG, EBV nuclear antigen. I am faxing him a

> > request for Anti-DNAse B for strep, Streptozyme test, and test for

> > Celiac Disease and also his consideration for Metal toxicity, leaky

> > gut test. I am afraid that he had us in and out so quickly that we

> > forgot to ask about these.

> >

> > He did not require a follow-up appointment opting to just wait for

> > the labs to come back and go from there.

> >

> > 's PCP is considering taking her on for this treatment but

> > was going to call us after reading the FAQ information. We saw him

> > about a week prior to seeing this doc for a routine followup to

> > bring him up to speed as to what had been going on since his last

> > visit. He told us that he had never heard of the protocol or Dr.

> > Brown and was honest about being hesitant to get involved. However,

> > he has been a true professional (Internal Medicine) and we both like

> > him. He said that he would call us back after a week to ten days. As

> > he did not seem too interested, we went with the new doc's visit in

> > order to get started asap. We ... I am very anxious to not let this

> > condition go on any longer untreated. So I guess we'll have to make

> > the best of the current situation of a not-to-enthusiastic physician

> > who is willing to prescribe and oversee the protocol (although

> > distant, 130 miles from home) over a physician that probably won't

> > ok it but has a much better demeanor and is right her in town.

> >

> > We are in the process of finding from where we want to obtain our

> > " naturals " and will be getting those asap, prior to starting the

> > protocol.

> >

> > Have any of you heard of Alinia? I had emailed this all to Ethel

> > earlier and she said it was not appropriate but I just wanted to put

> > this out there for everyone to be aware of and to see if anyone else

> > had been offered it. Also, I am very eager to hear feedback from any

> > and all of you on what light your personal experiences can shed on

> > our situation. I realize that we have just started on down this road

> > but I would like to know about and avoid as many pitfalls as

> possible.

> >

> > Thanks,

> > Rick

> >

>

September 10, 2009

Rick,

I don't know anything about Alinia, so I have no advice regarding that

drug. The concept of eliminating parasites makes sense though. I would not

start more than I antibiotic at a time. If she has a reaction, how would

you know which drug she is reacting to? It makes sense to start out with a

low dose of Minocin and work up to more, if needed. Some people do well on

a low dose, other's need more. Once you see how she is doing with the

Minocin, then would be the time to introduce Zithromax.

Take care,

Ute

September 10, 2009

Thank you for your helpful response. You have mentioned some things that

we have not thought of or known about. Ever more investigation, right?

RIck