Re: Dr Baughman & Minocycline

[Guest guest]

Perhaps the manufacturer of Minocycline would fund a trial, since they would

benefit from its approval for sarc. Rose

Dr Baughman & Minocycline

> Dear Lowelle,

>

> Welcome, I'm sorry you were so ill but glad you are better.

>

> I find it odd that many people on this list see Dr B yet none of them have

> ever been asked to take Minocycline. You'd have thought that if he knew

what

> a fantastic difference it made for you he'd have pushed for trials, since

> that is what he does with the rest of his research into sarcoidosis. I

know

> many people who have been part of Dr B.'s trials - yet none were for

> Minocycline.

>

> If such a good and easy opportunity was available for him to trial, he

would

> jump at it I am sure. Since he runs studies all the time, I'm surprised

> after your success that he hasn't done one with Minocycline. As you say

> though, money is always an issue and the health system is always short of

> money.

>

> I know of people on this list who have tried Minocycline without success,

> so perhaps it just depends on what the underlying cause of the bacteria

that

> invaded you and caused the sarcoid was?

>

> What worked for you, might not, or has not, worked for someone else. Same

> goes for me and everyone on this list. People are helped with psychic

> healing, herbs, chinese medicine, clinical trials, chemotherapy, aspirin,

> all sorts of things... everyone is different.

>

> Everyone needs to keep an open mind.

>

> Messages don't get deleted unless they are spam or abusive. We don't do

that

> sort of thing here. Especially if it contains information that might help

> someone. The only time we delete something else is if we are running out

of

> storage space on yahoogroups, and then we only delete the jokes and the

like

> Never things with information.

>

> This is a support group. We do look out for each other. Ultimately

everyone

> wants to be healthy.

>

> All the best,

> Aisha.

>

> Original Message:

> Good Morning and a Blessed and Happy '04 to Everyone!

>

> I am new to this board. I hope that everyone will hear me out and

> this message will not be deleted.

>

> I, too, see Dr. Baughman. My first appointment with him was in May

> '03. I was diagnosed with Stage II Sarcoidosis, through a biopsy of

> enlarged lymph nodes located in my groin. After taking a TB test and

> histoplasmosis titer, Sarc was the disease of choice.

>

> My Pulmonologist immediately put me on 40mg./day of Prednisone. I

> felt great for the first 2 days, but soon found that getting no sleep

> was the first bad side effect. I finally settled down to 20mgs./day,

> plus ativan to help me sleep at night.

>

> My Sarc involvement includes: lymphatic, right eye, lungs, liver,

> spleen and neuro. It was the neurologist who ordered the MRI, which

> found the lymph nodes. Thank the Good Lord for the Internet! I found

> that I was not alone in this disease. Also, I found a treatment, that

> I knew in my heart, would work for me.

>

> When I first met Dr. Baughman, he recommended methotrexate for me. He

> explained that I would have to have a liver biopsy every 2 years. I

> asked him about the Minocycline treatment that I found on SarcInfo.

> He said that he had used Doxycycline with some help for skin sarc, but

> had not used minocycline. I asked him why not? His answer was " there

> is no grant money. Find me some money and I will run a clinical trial

> on it " . He said that I could try the minocycline protocol, if I would

> keep a journal and promise to return for a checkup in 6 months. I

> agreed.

>

> Since no clinical trials have been run, it took me 4 months, from the

> time of my diagnosis, until I found a Doctor brave enough to run the

> risk that I would not sue him and help me. My D metabolite tests were

> run and I had a ratio of 5.25, which shows an active case of Sarc. I

> already knew that, because Dr. B had said so.

>

> In November of '03, I returned to Dr. Baughman with my journal. I

> showed him that I could now walk on my toes and heels (I could do

> neither, when I saw him in May), the huge patch of skin sarc on my

> thigh is now gone, I am riding/training/instructing horses and people

> again, my back brace (which I had worn every day for the past 3 years)

> is a thing of the past, I had lost 22 of the 25lbs that I gained while

> on Prednisone, I was able to get off of that awful drug in July and I

> can now walk longer than 15 minutes without running out of breath,

> legs cramping and back giving out!

>

> Dr. B looked at my improvements, journal and current x-rays and told

> me to continue what I was doing and see him in 6 months. He only

> needed to see me for 15 minutes to make that judgement.

>

> Aisha, You asked where were the people who were helped by Dr.

> Marshall? Why are they hiding? Well, I am only one of many, but here

> I am. I would have been dead, if not for this protocol. I have my

> life back! The reason that the word is not out is because there have

> been no clinical trials. Why? NO GRANT MONEY!!! We are working as

> hard as we can to get the money, because Dr. B has told me that he

> will run a trial when he gets the funds. You asked about taking

> chances? My Guardian Angels were sitting on my shoulder the day that

> I made my decision to take my chance.

>

> I hope that you will be open minded enough to keep this on the board.

> If you need to check out my story with Dr. B, then please do so.

>

> Lowelle Messner

> Hudson, OH

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://www.elderwyn.com/neurosarcoidosis/chat.php

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

*gasp*

Common sense!

-- Re: Dr Baughman & Minocycline

Perhaps the manufacturer of Minocycline would fund a trial, since they would

benefit from its approval for sarc. Rose

[Guest guest]

Good Evening! Aisha,

Yes, you would think that Dr. Baughman would have jumped at the chance

to try Minocycline in a research trial. However, minocycline is the

generic of Minocin, so Merck (the drug company) gets nothing by giving

money for a research trial. It all comes down to the " All Mighty

Dollar " .

Dr. Baughman told me, both times that I saw him, that he would be

happy to run a research trial, using minocycline, if I could find the

money for him to do so. No Money = No Trial!

It is extremely unfortunate that the drug companies are calling the

shots with our lives. The drugs that Dr. Baughman uses are being

funded by drug companies, which hope to be able to promote them for a

specific disease. Generic drugs are not being used for research

trials, because the drug companies will not benefit.

Would you please tell me how I can do a search for all of the folks

who have not had good results with minocycline? I would like to read

their stories.

As you have said, not everyone has the body chemistry that will work

with certain drugs. I guess that I am just one of the lucky ones, for

whom minocycline is the answer. I thank the Good Lord every day that

I am.

Sincerely,

Lowelle

> Perhaps the manufacturer of Minocycline would fund a trial, since

they would

> benefit from its approval for sarc. Rose

>

> Dr Baughman & Minocycline

>

>

> > Dear Lowelle,

> >

> > Welcome, I'm sorry you were so ill but glad you are better.

> >

> > I find it odd that many people on this list see Dr B yet none of

them have

> > ever been asked to take Minocycline. You'd have thought that if he

knew

> what

> > a fantastic difference it made for you he'd have pushed for

trials, since

> > that is what he does with the rest of his research into

sarcoidosis. I

> know

> > many people who have been part of Dr B.'s trials - yet none were

for

> > Minocycline.

> >

> > If such a good and easy opportunity was available for him to

trial, he

> would

> > jump at it I am sure. Since he runs studies all the time, I'm

surprised

> > after your success that he hasn't done one with Minocycline. As

you say

> > though, money is always an issue and the health system is always

short of

> > money.

> >

> > I know of people on this list who have tried Minocycline without

success,

> > so perhaps it just depends on what the underlying cause of the

bacteria

> that

> > invaded you and caused the sarcoid was?

> >

> > What worked for you, might not, or has not, worked for someone

else. Same

> > goes for me and everyone on this list. People are helped with

psychic

> > healing, herbs, chinese medicine, clinical trials, chemotherapy,

aspirin,

> > all sorts of things... everyone is different.

> >

> > Everyone needs to keep an open mind.

> >

> > Messages don't get deleted unless they are spam or abusive. We

don't do

> that

> > sort of thing here. Especially if it contains information that

might help

> > someone. The only time we delete something else is if we are

running out

> of

> > storage space on yahoogroups, and then we only delete the jokes

and the

> like

> > Never things with information.

> >

> > This is a support group. We do look out for each other. Ultimately

> everyone

> > wants to be healthy.

> >

> > All the best,

> > Aisha.

> >

> > Original Message:

> > Good Morning and a Blessed and Happy '04 to Everyone!

> >

> > I am new to this board. I hope that everyone will hear me out and

> > this message will not be deleted.

> >

> > I, too, see Dr. Baughman. My first appointment with him was in May

> > '03. I was diagnosed with Stage II Sarcoidosis, through a biopsy

of

> > enlarged lymph nodes located in my groin. After taking a TB test

and

> > histoplasmosis titer, Sarc was the disease of choice.

> >

> > My Pulmonologist immediately put me on 40mg./day of Prednisone. I

> > felt great for the first 2 days, but soon found that getting no

sleep

> > was the first bad side effect. I finally settled down to

20mgs./day,

> > plus ativan to help me sleep at night.

> >

> > My Sarc involvement includes: lymphatic, right eye, lungs, liver,

> > spleen and neuro. It was the neurologist who ordered the MRI,

which

> > found the lymph nodes. Thank the Good Lord for the Internet! I

found

> > that I was not alone in this disease. Also, I found a treatment,

that

> > I knew in my heart, would work for me.

> >

> > When I first met Dr. Baughman, he recommended methotrexate for

me. He

> > explained that I would have to have a liver biopsy every 2 years.

I

> > asked him about the Minocycline treatment that I found on

SarcInfo.

> > He said that he had used Doxycycline with some help for skin

sarc, but

> > had not used minocycline. I asked him why not? His answer was

" there

> > is no grant money. Find me some money and I will run a clinical

trial

> > on it " . He said that I could try the minocycline protocol, if I

would

> > keep a journal and promise to return for a checkup in 6 months. I

> > agreed.

> >

> > Since no clinical trials have been run, it took me 4 months, from

the

> > time of my diagnosis, until I found a Doctor brave enough to run

the

> > risk that I would not sue him and help me. My D metabolite tests

were

> > run and I had a ratio of 5.25, which shows an active case of

Sarc. I

> > already knew that, because Dr. B had said so.

> >

> > In November of '03, I returned to Dr. Baughman with my journal. I

> > showed him that I could now walk on my toes and heels (I could do

> > neither, when I saw him in May), the huge patch of skin sarc on my

> > thigh is now gone, I am riding/training/instructing horses and

people

> > again, my back brace (which I had worn every day for the past 3

years)

> > is a thing of the past, I had lost 22 of the 25lbs that I gained

while

> > on Prednisone, I was able to get off of that awful drug in July

and I

> > can now walk longer than 15 minutes without running out of breath,

> > legs cramping and back giving out!

> >

> > Dr. B looked at my improvements, journal and current x-rays and

told

> > me to continue what I was doing and see him in 6 months. He only

> > needed to see me for 15 minutes to make that judgement.

> >

> > Aisha, You asked where were the people who were helped by Dr.

> > Marshall? Why are they hiding? Well, I am only one of many, but

here

> > I am. I would have been dead, if not for this protocol. I have my

> > life back! The reason that the word is not out is because there

have

> > been no clinical trials. Why? NO GRANT MONEY!!! We are working as

> > hard as we can to get the money, because Dr. B has told me that he

> > will run a trial when he gets the funds. You asked about taking

> > chances? My Guardian Angels were sitting on my shoulder the day

that

> > I made my decision to take my chance.

> >

> > I hope that you will be open minded enough to keep this on the

board.

> > If you need to check out my story with Dr. B, then please do so.

> >

> > Lowelle Messner

> > Hudson, OH

> >

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> > Live Group Chat:-

> > Mondays & Fridays 10pm EST USA

> > http://www.elderwyn.com/neurosarcoidosis/chat.php

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

[Guest guest]

Good Evening! Aisha,

Yes, you would think that Dr. Baughman would have jumped at the chance

to try Minocycline in a research trial. However, minocycline is the

generic of Minocin, so Merck (the drug company) gets nothing by giving

money for a research trial. It all comes down to the " All Mighty

Dollar " .

Dr. Baughman told me, both times that I saw him, that he would be

happy to run a research trial, using minocycline, if I could find the

money for him to do so. No Money = No Trial!

It is extremely unfortunate that the drug companies are calling the

shots with our lives. The drugs that Dr. Baughman uses are being

funded by drug companies, which hope to be able to promote them for a

specific disease. Generic drugs are not being used for research

trials, because the drug companies will not benefit.

Would you please tell me how I can do a search for all of the folks

who have not had good results with minocycline? I would like to read

their stories.

As you have said, not everyone has the body chemistry that will work

with certain drugs. I guess that I am just one of the lucky ones, for

whom minocycline is the answer. I thank the Good Lord every day that

I am.

Sincerely,

Lowelle

> Perhaps the manufacturer of Minocycline would fund a trial, since

they would

> benefit from its approval for sarc. Rose

>

> Dr Baughman & Minocycline

>

>

> > Dear Lowelle,

> >

> > Welcome, I'm sorry you were so ill but glad you are better.

> >

> > I find it odd that many people on this list see Dr B yet none of

them have

> > ever been asked to take Minocycline. You'd have thought that if he

knew

> what

> > a fantastic difference it made for you he'd have pushed for

trials, since

> > that is what he does with the rest of his research into

sarcoidosis. I

> know

> > many people who have been part of Dr B.'s trials - yet none were

for

> > Minocycline.

> >

> > If such a good and easy opportunity was available for him to

trial, he

> would

> > jump at it I am sure. Since he runs studies all the time, I'm

surprised

> > after your success that he hasn't done one with Minocycline. As

you say

> > though, money is always an issue and the health system is always

short of

> > money.

> >

> > I know of people on this list who have tried Minocycline without

success,

> > so perhaps it just depends on what the underlying cause of the

bacteria

> that

> > invaded you and caused the sarcoid was?

> >

> > What worked for you, might not, or has not, worked for someone

else. Same

> > goes for me and everyone on this list. People are helped with

psychic

> > healing, herbs, chinese medicine, clinical trials, chemotherapy,

aspirin,

> > all sorts of things... everyone is different.

> >

> > Everyone needs to keep an open mind.

> >

> > Messages don't get deleted unless they are spam or abusive. We

don't do

> that

> > sort of thing here. Especially if it contains information that

might help

> > someone. The only time we delete something else is if we are

running out

> of

> > storage space on yahoogroups, and then we only delete the jokes

and the

> like

> > Never things with information.

> >

> > This is a support group. We do look out for each other. Ultimately

> everyone

> > wants to be healthy.

> >

> > All the best,

> > Aisha.

> >

> > Original Message:

> > Good Morning and a Blessed and Happy '04 to Everyone!

> >

> > I am new to this board. I hope that everyone will hear me out and

> > this message will not be deleted.

> >

> > I, too, see Dr. Baughman. My first appointment with him was in May

> > '03. I was diagnosed with Stage II Sarcoidosis, through a biopsy

of

> > enlarged lymph nodes located in my groin. After taking a TB test

and

> > histoplasmosis titer, Sarc was the disease of choice.

> >

> > My Pulmonologist immediately put me on 40mg./day of Prednisone. I

> > felt great for the first 2 days, but soon found that getting no

sleep

> > was the first bad side effect. I finally settled down to

20mgs./day,

> > plus ativan to help me sleep at night.

> >

> > My Sarc involvement includes: lymphatic, right eye, lungs, liver,

> > spleen and neuro. It was the neurologist who ordered the MRI,

which

> > found the lymph nodes. Thank the Good Lord for the Internet! I

found

> > that I was not alone in this disease. Also, I found a treatment,

that

> > I knew in my heart, would work for me.

> >

> > When I first met Dr. Baughman, he recommended methotrexate for

me. He

> > explained that I would have to have a liver biopsy every 2 years.

I

> > asked him about the Minocycline treatment that I found on

SarcInfo.

> > He said that he had used Doxycycline with some help for skin

sarc, but

> > had not used minocycline. I asked him why not? His answer was

" there

> > is no grant money. Find me some money and I will run a clinical

trial

> > on it " . He said that I could try the minocycline protocol, if I

would

> > keep a journal and promise to return for a checkup in 6 months. I

> > agreed.

> >

> > Since no clinical trials have been run, it took me 4 months, from

the

> > time of my diagnosis, until I found a Doctor brave enough to run

the

> > risk that I would not sue him and help me. My D metabolite tests

were

> > run and I had a ratio of 5.25, which shows an active case of

Sarc. I

> > already knew that, because Dr. B had said so.

> >

> > In November of '03, I returned to Dr. Baughman with my journal. I

> > showed him that I could now walk on my toes and heels (I could do

> > neither, when I saw him in May), the huge patch of skin sarc on my

> > thigh is now gone, I am riding/training/instructing horses and

people

> > again, my back brace (which I had worn every day for the past 3

years)

> > is a thing of the past, I had lost 22 of the 25lbs that I gained

while

> > on Prednisone, I was able to get off of that awful drug in July

and I

> > can now walk longer than 15 minutes without running out of breath,

> > legs cramping and back giving out!

> >

> > Dr. B looked at my improvements, journal and current x-rays and

told

> > me to continue what I was doing and see him in 6 months. He only

> > needed to see me for 15 minutes to make that judgement.

> >

> > Aisha, You asked where were the people who were helped by Dr.

> > Marshall? Why are they hiding? Well, I am only one of many, but

here

> > I am. I would have been dead, if not for this protocol. I have my

> > life back! The reason that the word is not out is because there

have

> > been no clinical trials. Why? NO GRANT MONEY!!! We are working as

> > hard as we can to get the money, because Dr. B has told me that he

> > will run a trial when he gets the funds. You asked about taking

> > chances? My Guardian Angels were sitting on my shoulder the day

that

> > I made my decision to take my chance.

> >

> > I hope that you will be open minded enough to keep this on the

board.

> > If you need to check out my story with Dr. B, then please do so.

> >

> > Lowelle Messner

> > Hudson, OH

> >

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> > Live Group Chat:-

> > Mondays & Fridays 10pm EST USA

> > http://www.elderwyn.com/neurosarcoidosis/chat.php

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

[Guest guest]

Dear Lowell,

There has been much discussion in the chatroom about minocyn, and one of our

dear list members are in there now who it didn't help, so if you'd like to

come to the live chat which is on now, you'd be most welcome.

I'll get back to you later about the rest of this I'm pretty tired today.

Live Group Chat:-

Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

Love Aisha.

-- Re: Dr Baughman & Minocycline

Good Evening! Aisha,

Yes, you would think that Dr. Baughman would have jumped at the chance

to try Minocycline in a research trial. However, minocycline is the

generic of Minocin, so Merck (the drug company) gets nothing by giving

money for a research trial. It all comes down to the " All Mighty

Dollar " .

Dr. Baughman told me, both times that I saw him, that he would be

happy to run a research trial, using minocycline, if I could find the

money for him to do so. No Money = No Trial!

It is extremely unfortunate that the drug companies are calling the

shots with our lives. The drugs that Dr. Baughman uses are being

funded by drug companies, which hope to be able to promote them for a

specific disease. Generic drugs are not being used for research

trials, because the drug companies will not benefit.

Would you please tell me how I can do a search for all of the folks

who have not had good results with minocycline? I would like to read

their stories.

As you have said, not everyone has the body chemistry that will work

with certain drugs. I guess that I am just one of the lucky ones, for

whom minocycline is the answer. I thank the Good Lord every day that

I am.

Sincerely,

Lowelle