Re: Lupus, polymyocitis newbie(LDN, Lupuzor)

[Guest guest]

Rick,

1)In addition to Minocin(which my wife takes), I would strongly suggest LDN (Low

Dose Naltrexone)-My wife has been taking LDN since FEB 2009, and she is now up

to 4 mg per night(working up to the standard dose of 4.5 mg per night). This

drug is definitely the new kid on the block, and has been wonderful for

Dermatomyositis, and I have heard of great success with Lupus too. (Dr.Burt

Berkson MD in New Mexico uses LDN for all his auto-immune patients,so check out

some of his videos on Youtube). LDN is probably even more effective when taken

with Alpha Lipoic Acid. For more info see www.ldn-help.com and

www.ldninfo.org. Best of all, it is a very safe ,inexpensive, and non toxic

drug, with immunomodulating properties

2)Lupuzor -the new drug for Lupus being developed in France (by Immupharma),and

should be available in about a year or so, and looks very promising at least at

this stage, as clinial trials are being carried out (may also help other auto

immune diseases, as they are developing 5 different serums).I believe it is also

a safe drug. We will watch this closely next year

Best of luck -Jim and kathryn

>

> 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

>

[Guest guest]

Thanks Jim and kathryn. As we are new to all this we are collecting all the info

we can to discuss with our doc ... which we hope to finally find a good one

soon.

Thanks,

Rick

> >

> > 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

> >

>