Re: Response from an Infectious Diesease physician.

[Guest guest]

Well said Eva!

Judy

[Guest guest]

Fairly typical response. I have been yelled at by various Drs and dismissed

routinely...par for the course. I was on the Antibiotic Protocol for over 2

yrs...All of my SD symptoms disappeared....I did quite well until I had an

unfortunate allergic, " hypersensitive reaction " to the minocin...I developed a

lung condition called OB, Obliterative Bronchiolitis....BOOP or OB...or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR...the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the minocin for Acne....when they developed the

OB...they were immediately taken off the minocin and the resulting lung

condition dissipated...So....did I get OB from the minocin or from RA or SD??

Don't know but my very learned and well respected rheumy, DR. Hendriks Whitman

took me off the minocin immediately....and I have not been allowed to go back on

it...just more information for you, hope this helps. I felt better on the

minocin therapy than I had in years...most, if not all of my symptoms

disappeared until the lung condition surfaced...Still, while Dr. Whitman will

not allow me to try the minocin again...because of the cases in the literature

where minocin caused OB (particularly in the acne patients) I felt that the

antibiotic therapy did help me.

Good luck to you....keep searching for good Drs...they are out there...I found

DR. Whitman on this BB....he came highly recommended....and to this day, we

drive from Ohio to NJ to see him once a year.

Debbie, Loveland, Ohio

rheumatic Response from an Infectious Diesease physician.

Some of you may remember my wife's name, , from a few weeks ago. She

was recently diagnosed with Lupus and Polymyocitis in April of this year. We are

new to all this and are actively looking for a physician that will oversee her

AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

I thought I would share a letter from an Infectious Diesease physician that I

recently (9/25) presented her records to in order to request his assistance. The

following is his response I just received in email form today:

Dear Mr. _____,

while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

Your wife needs significant immunosuppresive therapy guided by an experienced

rheumatologist and not antibiotics. I can assure you that the protocol suggested

is not benign and can have significant and potentially fatal side effects, with,

in my view, no reasonable chance of improvement. Please remain vigilant.

With regards and best wishes for the health of your wife

_______________________, MD

Division Chief

Division of Infectious Diseases

I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

Rick

BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

[Guest guest]

Rick,

I don't know what this doctor was talking about when he said expensive. AP is a

lot less expensive than the stuff the rheumatologists offer. I have been there

and done that. My monthly bill from the insurance was every month 4000 dollars,

and my health went down the tube. I spend about 100 dollars now a month for all

the meds and supplements I take and doing well. I have gone from severe pain to

only uncomfortable when getting up in the morning and feeling fine during the

day. From almost exhaustion to be able to do things again around the house.

I take Minoxin 200 mg MWF, Biaxin 1000 mg TuThSa, Thyroid Armour 90 mg daily,

LDN 4.5mg nightly plus my supplements.

I think the doctor has been brainwashed by a rheumy.

Eva

From: EAN_29209 <enavarro1@...>

Subject: rheumatic Response from an Infectious Diesease physician.

rheumatic

Date: Friday, September 25, 2009, 4:00 PM

 

Some of you may remember my wife's name, , from a few weeks ago. She was

recently diagnosed with Lupus and Polymyocitis in April of this year. We are new

to all this and are actively looking for a physician that will oversee her AP.

If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

I thought I would share a letter from an Infectious Diesease physician that I

recently (9/25) presented her records to in order to request his assistance. The

following is his response I just received in email form today:

Dear Mr. _____,

while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

Your wife needs significant immunosuppresive therapy guided by an experienced

rheumatologist and not antibiotics. I can assure you that the protocol suggested

is not benign and can have significant and potentially fatal side effects, with,

in my view, no reasonable chance of improvement. Please remain vigilant.

With regards and best wishes for the health of your wife

____________ _________ __, MD

Division Chief

Division of Infectious Diseases

I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

Rick

BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

[Guest guest]

Well, good riddance to the ignorant doctor.  We are hundreds, maybe thousands

who can tell you that in order to find the infectious agent, one needs to do

blood work.  What kind of infectious disease doctor doesn't start with the blood

work to see what kind of infection you have?  He is a jerk!  Also he is mistaken

when he calls these diseases " automimmune diseases.. "  These are infectious

diseases that enter the immune cells and kills the DNA, then proceed to enter

because they have no cell walls.  They feed off of our protein and multiply.

These micoplasmas are called cell wall deficient.  They are capable of entering

and damaging the immune system because they can morph into an L-shape and slide

right into the white immune cells.  The healthy cells recognize that these are

infected cells and that is when we get sick.  The battle starts. The bacteria is

killed by the immune system, not by the antibiotic.  The antibiotic only weakens

the

infected cells.    These are not autoimmune diseases, they are diseases that

attack the immune system.  Turning off the immune system renders your entire

system non functioning.  Any infection can then kill you.  One needs an immune

system intact in order for the healthy immune cells to fight back.  Anyone on

Minocin for a few years can tell you that they are alive today because of A/P. 

They don't teach this in medical school because they are afraid that taking an

inexpensive antibiotic will rob them of the money they get from keeping you sick

with steroids.  I call these doctors thieves, crooks and murderers.  What would

it have cost him to do the blood work and find the bacteria.  You are better off

without the idiot..  Take the antibiotics whereever and whenever you can get

them and keep searching for a doctor who is open minded and not clouded by

greed.  Now you are beginning to see what we all have been through.  What part

of the

country do you live in?  Find an A/P doc who will do the blood work and follow

you for at least two years, then go teach the doctors who told you it wouldn't

work.  Some of my past doctors can't believe my progress.  Rheumatologists make

money from all the patients they hook up to immune suppressants weekly.  And big

pharm makes a bundle on the oral immune suppressants, while the patient dies

slowly from the toxic effect or quickly from an infection.  Either way, you

cannot survive without your immune system.  Do not let anyone take it away from

you.  The best to you.  Continue your search and stay with the A/P.  Next time

you see a doc, tell him you want to be test for mycoplasmas and other L shaped

microganisms.  There are other, but I can't recall the names right now.  Others

will tell you about the ones that cause Lupus and Lyme disease.  Get checked

often for the first several years.  Wishing you good luck and staying power. 

You are

on thr right track!  Dolores & Mike

From: DEBBIE GIBSON <Debbullwinkle@...>

Subject: Re: rheumatic Response from an Infectious Diesease physician.

rheumatic

Date: Friday, September 25, 2009, 5:16 PM

 

Fairly typical response. I have been yelled at by various Drs and dismissed

routinely... par for the course. I was on the Antibiotic Protocol for over 2

yrs...All of my SD symptoms disappeared. ...I did quite well until I had an

unfortunate allergic, " hypersensitive reaction " to the minocin...I developed a

lung condition called OB, Obliterative Bronchiolitis. ...BOOP or OB....or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR. ..the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB.....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the

minocin for Acne....when they developed the OB...they were immediately taken

off the minocin and the resulting lung condition dissipated.. .So....did I get

OB from the minocin or from RA or SD?? Don't know but my very learned and well

respected rheumy, DR. Hendriks Whitman took me off the minocin immediately.

....and I have not been allowed to go back on it...just more information for you,

hope this helps. I felt better on the minocin therapy than I had in

years...most, if not all of my symptoms disappeared until the lung condition

surfaced...Still, while Dr. Whitman will not allow me to try the minocin

again...because of the cases in the literature where minocin caused OB

(particularly in the acne patients) I felt that the antibiotic therapy did help

me.

Good luck to you....keep searching for good Drs...they are out there...I found

DR. Whitman on this BB....he came highly recommended. ...and to this day, we

drive from Ohio to NJ to see him once a year.

Debbie, Loveland, Ohio

rheumatic Response from an Infectious Diesease physician.

Some of you may remember my wife's name, , from a few weeks ago. She was

recently diagnosed with Lupus and Polymyocitis in April of this year. We are new

to all this and are actively looking for a physician that will oversee her AP.

If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

I thought I would share a letter from an Infectious Diesease physician that I

recently (9/25) presented her records to in order to request his assistance. The

following is his response I just received in email form today:

Dear Mr. _____,

while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

Your wife needs significant immunosuppresive therapy guided by an experienced

rheumatologist and not antibiotics. I can assure you that the protocol suggested

is not benign and can have significant and potentially fatal side effects, with,

in my view, no reasonable chance of improvement. Please remain vigilant.

With regards and best wishes for the health of your wife

____________ _________ __, MD

Division Chief

Division of Infectious Diseases

I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

Rick

BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

[Guest guest]

Hi Dolores and Mike,

Just wanted to say that what you emailed should be " handed " to that doc who

has it all wrong. There's nothing I could add to all of that and it's

difficult not to get frustrated and really angry when a response such as his is

expelled from a so-called medical physician.

Happily, though, we are ALL smarter than he is!

Judy

[Guest guest]

Thank you Eva. This guy is just not a believer and (like most people) has never

had the need for hope. Regarding your Minoxin 200 mg and Biaxin 1000 mg, did you

start on this dose or weaned up to it? As I stated, we have just started on

minocycline and azythromiacin. I have been told by others (here on the forum)

that should really be on Minocin and by others that it does not matter.

I have also read (on the roadback.org site) that minocycline " might " not be the

best for Lupus patients. I don't really know what to believe. Also, I am

concerned that my wife might need to start on the IV therapy but have no way of

knowing. I want to find " someone " who knows this protocol so that I know that we

are doing the right thing. Right now we are just winging it but 's health

and future lay in the balance her. I have looked at the list of doctors referred

by these websites but are not sure about there credibility thus don't know which

way to go. I need help. I/we truly believe in this treatment and are not

dissuaded or discouraged by letters such as the one I posted here. But time is

of the essence and I need answers now. Thanks all.

Rick

>

>

> From: EAN_29209 <enavarro1@...>

> Subject: rheumatic Response from an Infectious Diesease physician.

> rheumatic

> Date: Friday, September 25, 2009, 4:00 PM

>

>

>  

>

>

>

> Some of you may remember my wife's name, , from a few weeks ago. She

was recently diagnosed with Lupus and Polymyocitis in April of this year. We are

new to all this and are actively looking for a physician that will oversee her

AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

>

> I thought I would share a letter from an Infectious Diesease physician that I

recently (9/25) presented her records to in order to request his assistance. The

following is his response I just received in email form today:

>

> Dear Mr. _____,

>

> while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

>

> While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

>

> Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

>

> Your wife needs significant immunosuppresive therapy guided by an experienced

rheumatologist and not antibiotics. I can assure you that the protocol suggested

is not benign and can have significant and potentially fatal side effects, with,

in my view, no reasonable chance of improvement. Please remain vigilant.

>

> With regards and best wishes for the health of your wife

>

> ____________ _________ __, MD

>

> Division Chief

> Division of Infectious Diseases

>

> I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

>

> Rick

>

> BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thank Debbie. A doctor such as you describe is what I am looking for. Someone

who not only understands but is motivated to learn. I hope we find one.

Rick

>

> Fairly typical response. I have been yelled at by various Drs and dismissed

routinely...par for the course. I was on the Antibiotic Protocol for over 2

yrs...All of my SD symptoms disappeared....I did quite well until I had an

unfortunate allergic, " hypersensitive reaction " to the minocin...I developed a

lung condition called OB, Obliterative Bronchiolitis....BOOP or OB...or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR...the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the minocin for Acne....when they developed the

OB...they were immediately taken off the minocin and the resulting lung

condition dissipated...So....did I get OB from the minocin or from RA or SD??

Don't know but my very learned and well respected rheumy, DR. Hendriks Whitman

took me off the minocin immediately....and I have not been allowed to go back on

it...just more information for you, hope this helps. I felt better on the

minocin therapy than I had in years...most, if not all of my symptoms

disappeared until the lung condition surfaced...Still, while Dr. Whitman will

not allow me to try the minocin again...because of the cases in the literature

where minocin caused OB (particularly in the acne patients) I felt that the

antibiotic therapy did help me.

> Good luck to you....keep searching for good Drs...they are out there...I found

DR. Whitman on this BB....he came highly recommended....and to this day, we

drive from Ohio to NJ to see him once a year.

> Debbie, Loveland, Ohio

> rheumatic Response from an Infectious Diesease physician.

>

>

> Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

>

> I thought I would share a letter from an Infectious Diesease physician that

I recently (9/25) presented her records to in order to request his assistance.

The following is his response I just received in email form today:

>

> Dear Mr. _____,

>

> while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

>

> While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

>

> Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

>

> Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

>

> With regards and best wishes for the health of your wife

>

> _______________________, MD

>

> Division Chief

> Division of Infectious Diseases

>

> I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

>

> Rick

>

> BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

>

>

>

>

>

>

[Guest guest]

Mike, you could have written the book. Of course you are preaching to the choir

but your response was direct, factually correct and stated with conviction. THAT

is the kind of doctor I am looking for. And don't worry, ... I will not be

deterred by these types of responses as I know what I believe. Thanks for being

here. Now, if we can just find a doc.

Rick

>

>

> From: DEBBIE GIBSON <Debbullwinkle@...>

> Subject: Re: rheumatic Response from an Infectious Diesease physician.

> rheumatic

> Date: Friday, September 25, 2009, 5:16 PM

>

>

>  

>

>

>

> Fairly typical response. I have been yelled at by various Drs and dismissed

routinely... par for the course. I was on the Antibiotic Protocol for over 2

yrs...All of my SD symptoms disappeared. ...I did quite well until I had an

unfortunate allergic, " hypersensitive reaction " to the minocin...I developed a

lung condition called OB, Obliterative Bronchiolitis. ...BOOP or OB....or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR. ..the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB.....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the

> minocin for Acne....when they developed the OB...they were immediately taken

off the minocin and the resulting lung condition dissipated.. .So....did I get

OB from the minocin or from RA or SD?? Don't know but my very learned and well

respected rheumy, DR. Hendriks Whitman took me off the minocin immediately.

....and I have not been allowed to go back on it...just more information for you,

hope this helps. I felt better on the minocin therapy than I had in

years...most, if not all of my symptoms disappeared until the lung condition

surfaced...Still, while Dr. Whitman will not allow me to try the minocin

again...because of the cases in the literature where minocin caused OB

(particularly in the acne patients) I felt that the antibiotic therapy did help

me.

> Good luck to you....keep searching for good Drs...they are out there...I found

DR. Whitman on this BB....he came highly recommended. ...and to this day, we

drive from Ohio to NJ to see him once a year.

> Debbie, Loveland, Ohio

> rheumatic Response from an Infectious Diesease physician.

>

> Some of you may remember my wife's name, , from a few weeks ago. She

was recently diagnosed with Lupus and Polymyocitis in April of this year. We are

new to all this and are actively looking for a physician that will oversee her

AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

>

> I thought I would share a letter from an Infectious Diesease physician that I

recently (9/25) presented her records to in order to request his assistance. The

following is his response I just received in email form today:

>

> Dear Mr. _____,

>

> while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

>

> While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

>

> Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

>

> Your wife needs significant immunosuppresive therapy guided by an experienced

rheumatologist and not antibiotics. I can assure you that the protocol suggested

is not benign and can have significant and potentially fatal side effects, with,

in my view, no reasonable chance of improvement. Please remain vigilant.

>

> With regards and best wishes for the health of your wife

>

> ____________ _________ __, MD

>

> Division Chief

> Division of Infectious Diseases

>

> I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

>

> Rick

>

> BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

>

>

[Guest guest]

Rick,

my pulmonary doctor started me on Biaxin 500 mg twice a day because the meds I

have had caused severe infections and he decided Biaxin was the best. I had to

wean of Prednison, Enbrel and Cellcept. In the meantime I found a doctor about

two hours away from Houston that does AP. Her mom had RA and she helped her mom

to go into remission. If you go to the Road Back Foundation. org  there is a lot

of info there and you can join that group. I learned a lot from them. Dr. K

didn't put me on Minocin until six months later. I am doing so much better, I

still have muscle weakness in my back but hopefully with LDN it will get better.

I am also doing exercise three times a week. Last year I could hardly lift my

leg, now I can walk around a football field once.

Another thing is on the Road back Foundation when you join there are volunteers

that can give you more doctor addresses. What State do you live in? Not nosey

but trying to see if I could get some help with more doctor addresses.

Regards,

Eva

From: EAN_29209 <enavarro1@...>

Subject: rheumatic Re: Response from an Infectious Diesease physician.

rheumatic

Date: Saturday, September 26, 2009, 3:51 PM

 

Thank you Eva. This guy is just not a believer and (like most people) has never

had the need for hope. Regarding your Minoxin 200 mg and Biaxin 1000 mg, did you

start on this dose or weaned up to it? As I stated, we have just started on

minocycline and azythromiacin. I have been told by others (here on the forum)

that should really be on Minocin and by others that it does not matter.

I have also read (on the roadback.org site) that minocycline " might " not be the

best for Lupus patients. I don't really know what to believe. Also, I am

concerned that my wife might need to start on the IV therapy but have no way of

knowing. I want to find " someone " who knows this protocol so that I know that we

are doing the right thing. Right now we are just winging it but 's health

and future lay in the balance her. I have looked at the list of doctors referred

by these websites but are not sure about there credibility thus don't know which

way to go. I

need help. I/we truly believe in this treatment and are not dissuaded or

discouraged by letters such as the one I posted here. But time is of the essence

and I need answers now. Thanks all.

Rick

>

>

> From: EAN_29209 <enavarro1@. ..>

> Subject: rheumatic Response from an Infectious Diesease physician.

> rheumatic@grou ps.com

> Date: Friday, September 25, 2009, 4:00 PM

>

>

>  

>

>

>

> Some of you may remember my wife's name, , from a few weeks ago. She

was recently diagnosed with Lupus and Polymyocitis in April of this year. We are

new to all this and are actively looking for a physician that will oversee her

AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

>

> I thought I would share a letter from an Infectious Diesease physician that I

recently (9/25) presented her records to in order to request his assistance. The

following is his response I just received in email form today:

>

> Dear Mr. _____,

>

> while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

>

> While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

>

> Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

>

> Your wife needs significant immunosuppresive therapy guided by an experienced

rheumatologist and not antibiotics. I can assure you that the protocol suggested

is not benign and can have significant and potentially fatal side effects, with,

in my view, no reasonable chance of improvement. Please remain vigilant.

>

> With regards and best wishes for the health of your wife

>

> ____________ _________ __, MD

>

> Division Chief

> Division of Infectious Diseases

>

> I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

>

> Rick

>

> BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Rick, I would highly recommend Dr. Hendriks Whitman, in Summit, NJ if you can

make that drive...I don't recall where you and your wife live...I have seen DR.

Whitman, Dr. Trentham in Boston and Dr. Franco in CA...I liked them all...but I

stayed with DR. Whitman....Many physicians will prescibe the AP but have no clue

what to do or what to watch out for, etc...

Good luck,

Debbie in Cincinnati

rheumatic Response from an Infectious Diesease physician.

>

>

> Some of you may remember my wife's name, , from a few weeks ago. She

was recently diagnosed with Lupus and Polymyocitis in April of this year. We are

new to all this and are actively looking for a physician that will oversee her

AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

>

> I thought I would share a letter from an Infectious Diesease physician that

I recently (9/25) presented her records to in order to request his assistance.

The following is his response I just received in email form today:

>

> Dear Mr. _____,

>

> while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

>

> While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

>

> Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

>

> Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

>

> With regards and best wishes for the health of your wife

>

> _______________________, MD

>

> Division Chief

> Division of Infectious Diseases

>

> I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

>

> Rick

>

> BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

>

>

>

>

>

>

[Guest guest]

Hi Rick, It is me, Dolores who does the writing in our house.  I am the one with

scleroderma, R/A & MCTD who is now in remission since April when my blood work

turned negative after 4 years of being positive with the micoplasma pneumonae. 

Mike is my husband and my greatest supporter.  He has flown with me everywghere

in search of knowledgable doctors.   I've had a myriad of them.  The first

A/P doc that was worth his salt was Dr. Trentham in Boston.  I stayed with him

for two years.  Prior to that I went from Doctor to doctor and all they could

offer were toxic meds and mental health clinics. I could not have lived with

very long on that combo.  I stayed with Dr. Trentham for two years.  Now, when I

move to a new location, I interview the doc and tell them that I am on an

antibiotic protocol that is working and that I will not settle for any other

protocol.  If they can't or won't treat me the way I want to be treated, they

can take a

hike.  After all, I am the one paying them.  They work for me, not the other

way round.  I usually bring some of my records showing my progress.  They cannot

argue with the notes of other docs.  I have become forward and brazen in my

doctor search.  I wasn't always like that, but found out that when it comes to

your health, one needs to fight tooth and nail.  S'funny you mention writing a

book.  I am writing one re; Coping mechanisms used by people who have diseases

that attack the immune system.  Notice, I refuse to call them " Autoimmune

diseases. "   I hope to get it published within the next year. I am already

publish in poetry.  So, this is a big step for me.  I want everyone to know

about A/P one of these days.  I know you won't give up.  yes, there have been

cases where Minocin is not recommended for Lupus patients.  She may have to go

on doxycycline instead.  I tke several kinds of antibiotics and keep switching

them.  I 'll do 6

months on one and then 6 months on another, always adding and subtracting

different antibiotics.  Since there are various kinds of bacteria/viruses that

attack the immune systme, it is important to know what the offending organism

is.  RBFis the place to get that info.  Check them out and also get a copy of

the Faq sheet on A/P most frequently asked questions.  Print it and keep it

handy. Also, read the books.  Good luck , and if you can, join a support group. 

Best to both of you, Dolores & Mike    P.S.  I have no doubt you will find the

right doc or become the right doc yourself!--Or teach the right doc. 

From: EAN_29209 <enavarro1@...>

Subject: rheumatic Re: Response from an Infectious Diesease physician.

rheumatic

Date: Saturday, September 26, 2009, 5:28 PM

 

Mike, you could have written the book. Of course you are preaching to the choir

but your response was direct, factually correct and stated with conviction. THAT

is the kind of doctor I am looking for. And don't worry, ... I will not be

deterred by these types of responses as I know what I believe. Thanks for being

here. Now, if we can just find a doc.

Rick

>

>

> From: DEBBIE GIBSON <Debbullwinkle@ ...>

> Subject: Re: rheumatic Response from an Infectious Diesease physician.

> rheumatic@grou ps.com

> Date: Friday, September 25, 2009, 5:16 PM

>

>

>  

>

>

>

> Fairly typical response. I have been yelled at by various Drs and dismissed

routinely... par for the course. I was on the Antibiotic Protocol for over 2

yrs...All of my SD symptoms disappeared. ...I did quite well until I had an

unfortunate allergic, " hypersensitive reaction " to the minocin...I developed a

lung condition called OB, Obliterative Bronchiolitis. ...BOOP or OB....or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR. ..the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB.....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the

> minocin for Acne....when they developed the OB...they were immediately taken

off the minocin and the resulting lung condition dissipated.. .So....did I get

OB from the minocin or from RA or SD?? Don't know but my very learned and well

respected rheumy, DR. Hendriks Whitman took me off the minocin immediately.

....and I have not been allowed to go back on it...just more information for you,

hope this helps. I felt better on the minocin therapy than I had in

years...most, if not all of my symptoms disappeared until the lung condition

surfaced...Still, while Dr. Whitman will not allow me to try the minocin

again...because of the cases in the literature where minocin caused OB

(particularly in the acne patients) I felt that the antibiotic therapy did help

me.

> Good luck to you....keep searching for good Drs...they are out there...I found

DR. Whitman on this BB....he came highly recommended. ...and to this day, we

drive from Ohio to NJ to see him once a year.

> Debbie, Loveland, Ohio

> rheumatic Response from an Infectious Diesease physician.

>

> Some of you may remember my wife's name, , from a few weeks ago. She

was recently diagnosed with Lupus and Polymyocitis in April of this year. We are

new to all this and are actively looking for a physician that will oversee her

AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

>

> I thought I would share a letter from an Infectious Diesease physician that I

recently (9/25) presented her records to in order to request his assistance. The

following is his response I just received in email form today:

>

> Dear Mr. _____,

>

> while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

>

> While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

>

> Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

>

> Your wife needs significant immunosuppresive therapy guided by an experienced

rheumatologist and not antibiotics. I can assure you that the protocol suggested

is not benign and can have significant and potentially fatal side effects, with,

in my view, no reasonable chance of improvement. Please remain vigilant.

>

> With regards and best wishes for the health of your wife

>

> ____________ _________ __, MD

>

> Division Chief

> Division of Infectious Diseases

>

> I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

>

> Rick

>

> BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

>

>

[Guest guest]

Hi Judy, Right on girl.  This is what happens when one has been raked through

the coals.  I started out scared and naive doing what was told and came close to

dying,  and then I found you guys.  And you all got me thru the worst of it. 

Now I am bold, and strong and stand up to the best of them because I know that I

live because of my supporters who told me about A/P.  I love you all.  And I

want to live!  I wonder if a survey of just how many A/P'ers there are.  I said

hundreds, maybe thousands!  Who knows!  We may be millions strong.  Now that is

something to look into.  Take care, The best to you, Dolores & Mike

From: Judkeels@... <Judkeels@...>

Subject: Re: rheumatic Response from an Infectious Diesease physician.

rheumatic

Date: Saturday, September 26, 2009, 6:48 AM

 

Hi Dolores and Mike,

Just wanted to say that what you emailed should be " handed " to that doc who

has it all wrong. There's nothing I could add to all of that and it's

difficult not to get frustrated and really angry when a response such as his is

expelled from a so-called medical physician.

Happily, though, we are ALL smarter than he is!

Judy

[Guest guest]

Eva, I've already joined and gotten some names from the Road back Foundation. I

will be looking into them. I live in SC. To your knowledge, are all the doc on

the lists the same insofar as knowledge of Dr. Brown's AP? Should I send them my

wife's history before making an appointment with one? These are the kinds of

questions I have. Maybe you can answer them.

Thanks,

Rick

> >

> >

> > From: EAN_29209 <enavarro1@ ..>

> > Subject: rheumatic Response from an Infectious Diesease physician.

> > rheumatic@grou ps.com

> > Date: Friday, September 25, 2009, 4:00 PM

> >

> >

> >  

> >

> >

> >

> > Some of you may remember my wife's name, , from a few weeks ago. She

was recently diagnosed with Lupus and Polymyocitis in April of this year. We are

new to all this and are actively looking for a physician that will oversee her

AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> >

> > I thought I would share a letter from an Infectious Diesease physician that

I recently (9/25) presented her records to in order to request his assistance.

The following is his response I just received in email form today:

> >

> > Dear Mr. _____,

> >

> > while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

> >

> > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> >

> > Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

> >

> > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> >

> > With regards and best wishes for the health of your wife

> >

> > ____________ _________ __, MD

> >

> > Division Chief

> > Division of Infectious Diseases

> >

> > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> >

> > Rick

> >

> > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Debbie, we live in SC so NJ is a " fer piece " off. How exactly would an

appointment be set up? Would we have to travel there often? How did your initial

visits unfold? Would we have to send him a medical history first or would that

be helpful?

Thanks,

Rick

> >

> > Fairly typical response. I have been yelled at by various Drs and

dismissed routinely...par for the course. I was on the Antibiotic Protocol for

over 2 yrs...All of my SD symptoms disappeared....I did quite well until I had

an unfortunate allergic, " hypersensitive reaction " to the minocin...I developed

a lung condition called OB, Obliterative Bronchiolitis....BOOP or OB...or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR...the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the minocin for Acne....when they developed the

OB...they were immediately taken off the minocin and the resulting lung

condition dissipated...So....did I get OB from the minocin or from RA or SD??

Don't know but my very learned and well respected rheumy, DR. Hendriks Whitman

took me off the minocin immediately....and I have not been allowed to go back on

it...just more information for you, hope this helps. I felt better on the

minocin therapy than I had in years...most, if not all of my symptoms

disappeared until the lung condition surfaced...Still, while Dr. Whitman will

not allow me to try the minocin again...because of the cases in the literature

where minocin caused OB (particularly in the acne patients) I felt that the

antibiotic therapy did help me.

> > Good luck to you....keep searching for good Drs...they are out there...I

found DR. Whitman on this BB....he came highly recommended....and to this day,

we drive from Ohio to NJ to see him once a year.

> > Debbie, Loveland, Ohio

> > rheumatic Response from an Infectious Diesease physician.

> >

> >

> > Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> >

> > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> >

> > Dear Mr. _____,

> >

> > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> >

> > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> >

> > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> >

> > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> >

> > With regards and best wishes for the health of your wife

> >

> > _______________________, MD

> >

> > Division Chief

> > Division of Infectious Diseases

> >

> > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> >

> > Rick

> >

> > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> >

> >

> >

> >

> >

> >

[Guest guest]

Would that be Hendricks H. Whitman, III, MD, FACP, FACR with the Summit Medical

Group, located at Berkeley Heights Campus, Bensley Pavilion, 1 Diamond Hill

Road, Berkeley Heights, NJ? Should I just call and make an appointment and is he

taking new patients?

Rick

> >

> > Fairly typical response. I have been yelled at by various Drs and

dismissed routinely...par for the course. I was on the Antibiotic Protocol for

over 2 yrs...All of my SD symptoms disappeared....I did quite well until I had

an unfortunate allergic, " hypersensitive reaction " to the minocin...I developed

a lung condition called OB, Obliterative Bronchiolitis....BOOP or OB...or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR...the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the minocin for Acne....when they developed the

OB...they were immediately taken off the minocin and the resulting lung

condition dissipated...So....did I get OB from the minocin or from RA or SD??

Don't know but my very learned and well respected rheumy, DR. Hendriks Whitman

took me off the minocin immediately....and I have not been allowed to go back on

it...just more information for you, hope this helps. I felt better on the

minocin therapy than I had in years...most, if not all of my symptoms

disappeared until the lung condition surfaced...Still, while Dr. Whitman will

not allow me to try the minocin again...because of the cases in the literature

where minocin caused OB (particularly in the acne patients) I felt that the

antibiotic therapy did help me.

> > Good luck to you....keep searching for good Drs...they are out there...I

found DR. Whitman on this BB....he came highly recommended....and to this day,

we drive from Ohio to NJ to see him once a year.

> > Debbie, Loveland, Ohio

> > rheumatic Response from an Infectious Diesease physician.

> >

> >

> > Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> >

> > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> >

> > Dear Mr. _____,

> >

> > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> >

> > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> >

> > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> >

> > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> >

> > With regards and best wishes for the health of your wife

> >

> > _______________________, MD

> >

> > Division Chief

> > Division of Infectious Diseases

> >

> > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> >

> > Rick

> >

> > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> >

> >

> >

> >

> >

> >

[Guest guest]

Yes, that is him!!!!! :>)) he came highly recommended by other patients on this

BB and I first saw him when first dx approx 10 yrs ago....DR W has saved my

life, literally, several times...and he has helped educate my insurance company

as to what treatments I need and what should be paid for and helped me fight for

them...He is very experienced with the antibiotic protocol and I believe he

trained with DR. Brown...He is well worth the drive....I have no idea where you

live, he is a good 12 hr drive for us, but well worth it....if you go, plan on

bringing copies of all labs, tests, etc...anything your wife has had done...come

prepared...come with a list of meds your wife is on...I type up these as well as

symptoms....the better to maximize the first hour long appt...I adore

him...absolutely adore him!!

Debbie

rheumatic Response from an Infectious Diesease physician.

> >

> >

> > Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> >

> > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> >

> > Dear Mr. _____,

> >

> > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> >

> > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> >

> > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> >

> > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> >

> > With regards and best wishes for the health of your wife

> >

> > _______________________, MD

> >

> > Division Chief

> > Division of Infectious Diseases

> >

> > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> >

> > Rick

> >

> > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> >

> >

> >

> >

> >

> >

[Guest guest]

How many hours for you? I would call his office asap and speak with Ellen, his

long time nurse...she is great...they will tell you what to bring...as for me,

as I indicated in my earlier email, I came prepared...he is thorough and I like

to maximize the time with him...He is not a touchy feely, huggy DR...but he is

practical, down to earth, and absolutely brilliant!!! Any time you see a new

Dr, bring all records, copies of labs...I carry a notebook divided into

sections, labs, tests, physician letters, etc...with the current on top of the

page in each section...always request copies...saves time...and even tho,

supposedly the Drs will forward info...I have found many times, they do not...

I have been told by local DRs here in town, " Why are you fighting this so hard,

you are doing to die " ,,,fired that Internist...one lung DR insisted I go to his

wife, an oncologist and receive cytoxin chemo there...when I asked for the

studies to back up the use of that particular chemo for my resulting lung

disease from the SD and RA...he could show me nothing...AND DR Whitman was

against it...he said ONLY if it was last ditch..he preferred I go with an

established tx that he knew would work for my lung disease...Insurance

refused...He and my Dr at Yale...DR. Girardi wrote letters and spoke via

telephone at my insurance hearing...Dr Whitman referred me to the Yale DR, DR.

Mike Girardi for my lung disease.....The cytoxin the DR here in town was

insisting on...courtesy of his wife...that has been known to cause lymphoma and

bladder and liver cancer down the road...DR. Whitman felt I should try something

else first....After a long battle with insurance company and the help from my

good DRs...I received this treatment...and my lungs are stable!! :>)))

Hope this helps....Keep your chin up...and become educated....that is what

helped me....I don't take no for an answer and I don't accept the prognosis....

Please write if I can help in any way...Debbie

rheumatic Response from an Infectious Diesease physician.

> >

> >

> > Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> >

> > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> >

> > Dear Mr. _____,

> >

> > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> >

> > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> >

> > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> >

> > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> >

> > With regards and best wishes for the health of your wife

> >

> > _______________________, MD

> >

> > Division Chief

> > Division of Infectious Diseases

> >

> > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> >

> > Rick

> >

> > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> >

> >

> >

> >

> >

> >

[Guest guest]

We just started seeing him last month, so yes he is taking new patients.

(we are going for polymyositis)

________________________________

From: EAN_29209 <enavarro1@...>

rheumatic

Sent: Saturday, September 26, 2009 10:35:57 PM

Subject: rheumatic Re: Response from an Infectious Diesease physician.

Would that be Hendricks H. Whitman, III, MD, FACP, FACR with the Summit Medical

Group, located at Berkeley Heights Campus, Bensley Pavilion, 1 Diamond Hill

Road, Berkeley Heights, NJ? Should I just call and make an appointment and is he

taking new patients?

Rick

> >

> > Fairly typical response. I have been yelled at by various Drs and

dismissed routinely... par for the course. I was on the Antibiotic Protocol for

over 2 yrs...All of my SD symptoms disappeared. ...I did quite well until I had

an unfortunate allergic, " hypersensitive reaction " to the minocin...I developed

a lung condition called OB, Obliterative Bronchiolitis. ...BOOP or OB...or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR. ..the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the

minocin for Acne....when they developed the OB...they were immediately taken

off the minocin and the resulting lung condition dissipated.. .So....did I get

OB from the minocin or from RA or SD?? Don't know but my very learned and well

respected rheumy, DR. Hendriks Whitman took me off the minocin immediately.

....and I have not been allowed to go back on it...just more information for you,

hope this helps. I felt better on the minocin therapy than I had in

years...most, if not all of my symptoms disappeared until the lung condition

surfaced...Still, while Dr. Whitman will not allow me to try the minocin

again...because of the cases in the literature where minocin caused OB

(particularly in the acne patients) I felt that the antibiotic therapy did help

me.

> > Good luck to you....keep searching for good Drs...they are out there...I

found DR. Whitman on this BB....he came highly recommended. ...and to this day,

we drive from Ohio to NJ to see him once a year.

> > Debbie, Loveland, Ohio

> > rheumatic Response from an Infectious Diesease physician.

> >

> >

> > Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> >

> > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> >

> > Dear Mr. _____,

> >

> > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> >

> > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> >

> > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> >

> > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> >

> > With regards and best wishes for the health of your wife

> >

> > ____________ _________ __, MD

> >

> > Division Chief

> > Division of Infectious Diseases

> >

> > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> >

> > Rick

> >

> > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> >

> >

> >

> >

> >

> >

[Guest guest]

Did he really study under Dr Brown???

________________________________

From: DEBBIE GIBSON <Debbullwinkle@...>

rheumatic

Sent: Saturday, September 26, 2009 10:46:54 PM

Subject: Re: rheumatic Re: Response from an Infectious Diesease physician.

Yes, that is him!!!!! :>)) he came highly recommended by other patients on this

BB and I first saw him when first dx approx 10 yrs ago....DR W has saved my

life, literally, several times...and he has helped educate my insurance company

as to what treatments I need and what should be paid for and helped me fight for

them...He is very experienced with the antibiotic protocol and I believe he

trained with DR. Brown...He is well worth the drive....I have no idea where you

live, he is a good 12 hr drive for us, but well worth it....if you go, plan on

bringing copies of all labs, tests, etc...anything your wife has had done...come

prepared...come with a list of meds your wife is on...I type up these as well as

symptoms.... the better to maximize the first hour long appt...I adore

him...absolutely adore him!!

Debbie

rheumatic Response from an Infectious Diesease physician.

> >

> >

> > Some of you may remember my wife's name, , from a few weeks ago. She

was recently diagnosed with Lupus and Polymyocitis in April of this year. We are

new to all this and are actively looking for a physician that will oversee her

AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> >

> > I thought I would share a letter from an Infectious Diesease physician that

I recently (9/25) presented her records to in order to request his assistance.

The following is his response I just received in email form today:

> >

> > Dear Mr. _____,

> >

> > while I am impressed by the incredibly diligent documentation of your wife's

illness and am truly sorry for the devastation that your wife's illness must

have caused both of you, I am unfortunately not a good choice as a physician to

accompany your wife through this ordeal.

> >

> > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> >

> > Physicians who continue to adhere to Dr. Brown's theories often offer other

" quack " theories and treatments as well, many of which are perfectly capable of

draining patient's wealth or causing major side effects without any significant

improvement. However many of these have appropriately lost their licenses, more

seem to pop up at any given time, willing to take advantage of desperate

patients.

> >

> > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> >

> > With regards and best wishes for the health of your wife

> >

> > ____________ _________ __, MD

> >

> > Division Chief

> > Division of Infectious Diseases

> >

> > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> >

> > Rick

> >

> > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> >

> >

> >

> >

> >

> >

[Guest guest]

I honestly believe he did, I think that I read this or heard this from Pat

Ganger, the original Pres of the RoadBack Foundation....I think that DR W also

will acknowledge this if asked...Pat Ganger lives in Columbus, Ohio....and has

written a very good book on the autoimmune diseases and the antibiotic protocol

re Dr. Brown...Debbie

rheumatic Response from an Infectious Diesease physician.

> >

> >

> > Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> >

> > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> >

> > Dear Mr. _____,

> >

> > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> >

> > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> >

> > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> >

> > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> >

> > With regards and best wishes for the health of your wife

> >

> > ____________ _________ __, MD

> >

> > Division Chief

> > Division of Infectious Diseases

> >

> > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> >

> > Rick

> >

> > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> >

> >

> >

> >

> >

> >

[Guest guest]

So this Dr Whitman is actually a rheumy who believes in AP? I didn't think that

existed!! So is it safe to say he is very experienced in AP and that he truly

believes in it? (IE: Won't try pushing the standard RA drugs)?

I have been thinking of trying to find a more experienced AP doc.. I feel mine

just prescribes the Mino and won't know what to do if we need to tweak

anything..

Does Dr Whitman often tweak the protocol to each indvidual?

Thanks!

> > >

> > > Fairly typical response. I have been yelled at by various Drs and

dismissed routinely... par for the course. I was on the Antibiotic Protocol for

over 2 yrs...All of my SD symptoms disappeared. ...I did quite well until I had

an unfortunate allergic, " hypersensitive reaction " to the minocin...I developed

a lung condition called OB, Obliterative Bronchiolitis. ...BOOP or OB...or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR. ..the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the

> minocin for Acne....when they developed the OB...they were immediately taken

off the minocin and the resulting lung condition dissipated.. .So....did I get

OB from the minocin or from RA or SD?? Don't know but my very learned and well

respected rheumy, DR. Hendriks Whitman took me off the minocin immediately.

....and I have not been allowed to go back on it...just more information for you,

hope this helps. I felt better on the minocin therapy than I had in

years...most, if not all of my symptoms disappeared until the lung condition

surfaced...Still, while Dr. Whitman will not allow me to try the minocin

again...because of the cases in the literature where minocin caused OB

(particularly in the acne patients) I felt that the antibiotic therapy did help

me.

> > > Good luck to you....keep searching for good Drs...they are out there...I

found DR. Whitman on this BB....he came highly recommended. ...and to this day,

we drive from Ohio to NJ to see him once a year.

> > > Debbie, Loveland, Ohio

> > > rheumatic Response from an Infectious Diesease physician.

> > >

> > >

> > > Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> > >

> > > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> > >

> > > Dear Mr. _____,

> > >

> > > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> > >

> > > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> > >

> > > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> > >

> > > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> > >

> > > With regards and best wishes for the health of your wife

> > >

> > > ____________ _________ __, MD

> > >

> > > Division Chief

> > > Division of Infectious Diseases

> > >

> > > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> > >

> > > Rick

> > >

> > > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

So far we have had only one visit. He did not seem opposed to using methotrexate

if necessary - which I was surprised by but I think it would be in a case of

extreme inflammation. He was going to make that assessment after reviewing a lot

of bloodwork (far more than anu other doctor we have been to). It is way too

early for me to give an assessment of him, but it sounds like he is well

regarded by this group.

________________________________

From: Tbird2340 <tscott2340@...>

rheumatic

Sent: Sunday, September 27, 2009 8:02:23 AM

Subject: rheumatic Re: Response from an Infectious Diesease physician.

So this Dr Whitman is actually a rheumy who believes in AP? I didn't think that

existed!! So is it safe to say he is very experienced in AP and that he truly

believes in it? (IE: Won't try pushing the standard RA drugs)?

I have been thinking of trying to find a more experienced AP doc.. I feel mine

just prescribes the Mino and won't know what to do if we need to tweak

anything..

Does Dr Whitman often tweak the protocol to each indvidual?

Thanks!

> > >

> > > Fairly typical response. I have been yelled at by various Drs and

dismissed routinely... par for the course. I was on the Antibiotic Protocol for

over 2 yrs...All of my SD symptoms disappeared. ...I did quite well until I had

an unfortunate allergic, " hypersensitive reaction " to the minocin...I developed

a lung condition called OB, Obliterative Bronchiolitis. ...BOOP or OB...or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR. ..the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on

the

> minocin for Acne....when they developed the OB...they were immediately taken

off the minocin and the resulting lung condition dissipated.. .So....did I get

OB from the minocin or from RA or SD?? Don't know but my very learned and well

respected rheumy, DR. Hendriks Whitman took me off the minocin immediately.

....and I have not been allowed to go back on it...just more information for you,

hope this helps. I felt better on the minocin therapy than I had in

years...most, if not all of my symptoms disappeared until the lung condition

surfaced...Still, while Dr. Whitman will not allow me to try the minocin

again...because of the cases in the literature where minocin caused OB

(particularly in the acne patients) I felt that the antibiotic therapy did help

me.

> > > Good luck to you....keep searching for good Drs...they are out there...I

found DR. Whitman on this BB....he came highly recommended. ...and to this day,

we drive from Ohio to NJ to see him once a year.

> > > Debbie, Loveland, Ohio

> > > rheumatic Response from an Infectious Diesease physician.

> > >

> > >

> > > Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> > >

> > > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> > >

> > > Dear Mr. _____,

> > >

> > > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> > >

> > > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> > >

> > > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> > >

> > > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> > >

> > > With regards and best wishes for the health of your wife

> > >

> > > ____________ _________ __, MD

> > >

> > > Division Chief

> > > Division of Infectious Diseases

> > >

> > > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> > >

> > > Rick

> > >

> > > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

A better testimony I've not yet heard. and I sat down this morning to

discuss how far we are willing to go. There seems to be two docs that have been

equally lauded here on this site. One is a Dr. ph Sentef and he has offices

in Dalton, GA and another across the TN border in Chattanooga. That's about 4-5

hours away, 239 miles. He also has RA. The other is Dr. Whitman, 569 miles.

We've decided to call both this week and see what's involved with getting an

appointment. I have all my wife's medical history (labs, office notes, etc.)

ready at all times, so that won't be a problem. We just need to get in. So, wish

us luck.

Rick

> > >

> > > Fairly typical response. I have been yelled at by various Drs and

dismissed routinely...par for the course. I was on the Antibiotic Protocol for

over 2 yrs...All of my SD symptoms disappeared....I did quite well until I had

an unfortunate allergic, " hypersensitive reaction " to the minocin...I developed

a lung condition called OB, Obliterative Bronchiolitis....BOOP or OB...or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR...the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the minocin for Acne....when they developed the

OB...they were immediately taken off the minocin and the resulting lung

condition dissipated...So....did I get OB from the minocin or from RA or SD??

Don't know but my very learned and well respected rheumy, DR. Hendriks Whitman

took me off the minocin immediately....and I have not been allowed to go back on

it...just more information for you, hope this helps. I felt better on the

minocin therapy than I had in years...most, if not all of my symptoms

disappeared until the lung condition surfaced...Still, while Dr. Whitman will

not allow me to try the minocin again...because of the cases in the literature

where minocin caused OB (particularly in the acne patients) I felt that the

antibiotic therapy did help me.

> > > Good luck to you....keep searching for good Drs...they are out there...I

found DR. Whitman on this BB....he came highly recommended....and to this day,

we drive from Ohio to NJ to see him once a year.

> > > Debbie, Loveland, Ohio

> > > rheumatic Response from an Infectious Diesease physician.

> > >

> > >

> > > Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> > >

> > > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> > >

> > > Dear Mr. _____,

> > >

> > > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> > >

> > > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> > >

> > > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> > >

> > > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> > >

> > > With regards and best wishes for the health of your wife

> > >

> > > _______________________, MD

> > >

> > > Division Chief

> > > Division of Infectious Diseases

> > >

> > > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> > >

> > > Rick

> > >

> > > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Debbie I really appreciate your comments. There are so many folks on this site

that are so helpful and inspirational. Thank you.

RIck

> > >

> > > Fairly typical response. I have been yelled at by various Drs and

dismissed routinely...par for the course. I was on the Antibiotic Protocol for

over 2 yrs...All of my SD symptoms disappeared....I did quite well until I had

an unfortunate allergic, " hypersensitive reaction " to the minocin...I developed

a lung condition called OB, Obliterative Bronchiolitis....BOOP or OB...or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR...the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on the minocin for Acne....when they developed the

OB...they were immediately taken off the minocin and the resulting lung

condition dissipated...So....did I get OB from the minocin or from RA or SD??

Don't know but my very learned and well respected rheumy, DR. Hendriks Whitman

took me off the minocin immediately....and I have not been allowed to go back on

it...just more information for you, hope this helps. I felt better on the

minocin therapy than I had in years...most, if not all of my symptoms

disappeared until the lung condition surfaced...Still, while Dr. Whitman will

not allow me to try the minocin again...because of the cases in the literature

where minocin caused OB (particularly in the acne patients) I felt that the

antibiotic therapy did help me.

> > > Good luck to you....keep searching for good Drs...they are out there...I

found DR. Whitman on this BB....he came highly recommended....and to this day,

we drive from Ohio to NJ to see him once a year.

> > > Debbie, Loveland, Ohio

> > > rheumatic Response from an Infectious Diesease physician.

> > >

> > >

> > > Some of you may remember my wife's name, , from a few weeks ago.

She was recently diagnosed with Lupus and Polymyocitis in April of this year. We

are new to all this and are actively looking for a physician that will oversee

her AP. If you remember, we did find a " pusher " that is willing to prescribe the

antibiotics which she has already started, but, beyond that, is non-existent.

> > >

> > > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> > >

> > > Dear Mr. _____,

> > >

> > > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> > >

> > > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> > >

> > > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> > >

> > > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> > >

> > > With regards and best wishes for the health of your wife

> > >

> > > _______________________, MD

> > >

> > > Division Chief

> > > Division of Infectious Diseases

> > >

> > > I will say this, he is prompt and direct. Anyway, ....... on to the next

physician.

> > >

> > > Rick

> > >

> > > BTW, sorry I missed the chat. Found out too late and still had a problem

registering. The process is not very clear.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Who are you talking about Tbird?

> > > >

> > > > Fairly typical response. I have been yelled at by various Drs and

dismissed routinely... par for the course. I was on the Antibiotic Protocol for

over 2 yrs...All of my SD symptoms disappeared. ...I did quite well until I had

an unfortunate allergic, " hypersensitive reaction " to the minocin...I developed

a lung condition called OB, Obliterative Bronchiolitis. ...BOOP or OB...or

BO...depending on which DR is speaking of my lung issue...The OB could have been

caused by the minocin...OR. ..the OB could have also been caused by my RA or the

SD...I am diagnosed with both SD, scleroderma and RA...I have read of cases in

the literature where patients with RA developed OB....and this without being on

the minocin protocol...I have also read of patients, taking minocin protocol for

NOT Autoimmune disease, SD or other...but on the minocin protocol for an acne

therapy....several of these patients developed OB....To the best of my

knowledge, the patients on

> the

> > minocin for Acne....when they developed the OB...they were immediately

taken off the minocin and the resulting lung condition dissipated.. .So....did I

get OB from the minocin or from RA or SD?? Don't know but my very learned and

well respected rheumy, DR. Hendriks Whitman took me off the minocin immediately.

....and I have not been allowed to go back on it...just more information for you,

hope this helps. I felt better on the minocin therapy than I had in

years...most, if not all of my symptoms disappeared until the lung condition

surfaced...Still, while Dr. Whitman will not allow me to try the minocin

again...because of the cases in the literature where minocin caused OB

(particularly in the acne patients) I felt that the antibiotic therapy did help

me.

> > > > Good luck to you....keep searching for good Drs...they are out

there...I found DR. Whitman on this BB....he came highly recommended. ...and to

this day, we drive from Ohio to NJ to see him once a year.

> > > > Debbie, Loveland, Ohio

> > > > rheumatic Response from an Infectious Diesease physician.

> > > >

> > > >

> > > > Some of you may remember my wife's name, , from a few weeks

ago. She was recently diagnosed with Lupus and Polymyocitis in April of this

year. We are new to all this and are actively looking for a physician that will

oversee her AP. If you remember, we did find a " pusher " that is willing to

prescribe the antibiotics which she has already started, but, beyond that, is

non-existent.

> > > >

> > > > I thought I would share a letter from an Infectious Diesease physician

that I recently (9/25) presented her records to in order to request his

assistance. The following is his response I just received in email form today:

> > > >

> > > > Dear Mr. _____,

> > > >

> > > > while I am impressed by the incredibly diligent documentation of your

wife's illness and am truly sorry for the devastation that your wife's illness

must have caused both of you, I am unfortunately not a good choice as a

physician to accompany your wife through this ordeal.

> > > >

> > > > While I agree that infections are a likely trigger for many autoimmune

illnesses, there is clear evidence that treatment of any such triggers will not

affect the course of the subsequent illness other than through placebo effect.

Let me give you an example from another field: While it is clear that smoking

induces mutations that cause lung cancer, the treatment for the cancer is

chemotherapy not a nicotine patch and smoking cessation. The same is true for

autoimmune diseases.

> > > >

> > > > Physicians who continue to adhere to Dr. Brown's theories often offer

other " quack " theories and treatments as well, many of which are perfectly

capable of draining patient's wealth or causing major side effects without any

significant improvement. However many of these have appropriately lost their

licenses, more seem to pop up at any given time, willing to take advantage of

desperate patients.

> > > >

> > > > Your wife needs significant immunosuppresive therapy guided by an

experienced rheumatologist and not antibiotics. I can assure you that the

protocol suggested is not benign and can have significant and potentially fatal

side effects, with, in my view, no reasonable chance of improvement. Please

remain vigilant.

> > > >

> > > > With regards and best wishes for the health of your wife

> > > >

> > > > ____________ _________ __, MD

> > > >

> > > > Division Chief

> > > > Division of Infectious Diseases

> > > >

> > > > I will say this, he is prompt and direct. Anyway, ....... on to the

next physician.

> > > >

> > > > Rick

> > > >

> > > > BTW, sorry I missed the chat. Found out too late and still had a

problem registering. The process is not very clear.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >