Comments on: Interview with Gene Johnson – sarcoidosis, bladder cancer http://bacteriality.com/2008/07/18/interview24/ Thu, 07 Oct 2010 19:51:10 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Paul Albert http://bacteriality.com/2008/07/18/interview24/comment-page-1/#comment-18269 Paul Albert Mon, 19 Oct 2009 14:41:20 +0000 http://bacteriality.com/?p=264#comment-18269 Hi Wensley, I'm glad you're interested in the Marshall Protocol. Let me offer you some reading material as you start to investigate the MP further: http://mpkb.org/doku.php/home:starting:physician:finding http://mpkb.org/doku.php/home:starting http://mpkb.org/doku.php/home:patients Also, look for my email. Best, Paul Hi Wensley,

I’m glad you’re interested in the Marshall Protocol. Let me offer you some reading material as you start to investigate the MP further:
http://mpkb.org/doku.php/home:starting:physician:finding
http://mpkb.org/doku.php/home:starting
http://mpkb.org/doku.php/home:patients

Also, look for my email.

Best,
Paul

]]> By: Wensley http://bacteriality.com/2008/07/18/interview24/comment-page-1/#comment-18255 Wensley Fri, 16 Oct 2009 15:18:28 +0000 http://bacteriality.com/?p=264#comment-18255 Hello Amy and Paul, My name is Wensley Doorson from Holland (Amsterdam) A few weeks a go i saw the information about MP on the internet. Very encouraging i must say. About 3 years ago a was diagnosed on sarcoidosis. On the dutch internet sites people dont talk about cure the sacoidosis, because they all think this is irreversible. I dont believe that. Do you know dr. in Holland who support the MP? Thanks for answering Wensley Hello Amy and Paul,
My name is Wensley Doorson from Holland (Amsterdam) A few weeks a go i saw the information about MP on the internet. Very encouraging i must say.
About 3 years ago a was diagnosed on sarcoidosis. On the dutch internet sites people dont talk about cure the sacoidosis, because they all think this is irreversible. I dont believe that.
Do you know dr. in Holland who support the MP?
Thanks for answering
Wensley

]]> By: Gene Johnson http://bacteriality.com/2008/07/18/interview24/comment-page-1/#comment-18170 Gene Johnson Tue, 29 Sep 2009 20:44:35 +0000 http://bacteriality.com/?p=264#comment-18170 Hello all, As an update, my latest bladder scope was negative for any visible tumors. Doc also ordered a FISH assay which is a study of chromosomes specific to bladder cancer looking for irregularities. The good news is that this assay was also negative. Here is the actual description of the assay: “The UroVysion Bladder Cancer Kit for bladder cancer detection is an FDA approved fluorescence in situ hybridization (FISH) test and has been optimized for identifying and quantitating chromosomes, 3, 7, and 17, and locus 9p21 in human urine specimens.” Although the test is specific for bladder cancer doc says it can be a general test for everything associated with the area such as the kidneys, prostrate, and urinary tract system. Good news again (sigh of relief). I appreciate all your kind words and support. Kimberly, I read your post with interest and want to mention that osteoporosis can result from a dysregulated vitamin D nuclear receptor (VDR) that results in a high level of the hormone 1,25-D (vitamin D is not a vitamin, it is a hormone). The Merck manual states that 1,25-D levels above 42 pg/ml can leach calcium from bone. I suggest you have your 1,25-D tested. Be sure to follow the instructions and have the sample frozen until the test otherwise you may get a false low reading due to degradation of the sample. Check the MP web site for more information. Marji, I am sorry you are so sick. I hope you have been able to find a doctor who will prescribe the MP. The idea that benicar can prevent cancer metastasis is very appealing. Benicar is an agonist to the VDR and enables it to transcribe over 900 genes important to a healthy immune system. Suzanna, I hope you have been able to find a doc in the UK to treat your sarc. If not, I am sure there are people on one of the three MP sites that can help. Don’t give up because the MP is the only cure. Steroids only mask the symptoms. Patricia, I hope Amy and Paul’s posts were able to give you the information you need to get started on the MP. Best of luck on your journey to good health. Hello all,

As an update, my latest bladder scope was negative for any visible tumors. Doc also ordered a FISH assay which is a study of chromosomes specific to bladder cancer looking for irregularities. The good news is that this assay was also negative.

Here is the actual description of the assay:
“The UroVysion Bladder Cancer Kit for bladder cancer detection is an FDA approved fluorescence in situ hybridization (FISH) test and has been optimized for identifying and quantitating chromosomes, 3, 7, and 17, and locus 9p21 in human urine specimens.”

Although the test is specific for bladder cancer doc says it can be a general test for everything associated with the area such as the kidneys, prostrate, and urinary tract system. Good news again (sigh of relief).

I appreciate all your kind words and support.

Kimberly, I read your post with interest and want to mention that osteoporosis can result from a dysregulated vitamin D nuclear receptor (VDR) that results in a high level of the hormone 1,25-D (vitamin D is not a vitamin, it is a hormone). The Merck manual states that 1,25-D levels above 42 pg/ml can leach calcium from bone. I suggest you have your 1,25-D tested. Be sure to follow the instructions and have the sample frozen until the test otherwise you may get a false low reading due to degradation of the sample. Check the MP web site for more information.

Marji, I am sorry you are so sick. I hope you have been able to find a doctor who will prescribe the MP. The idea that benicar can prevent cancer metastasis is very appealing. Benicar is an agonist to the VDR and enables it to transcribe over 900 genes important to a healthy immune system.

Suzanna, I hope you have been able to find a doc in the UK to treat your sarc. If not, I am sure there are people on one of the three MP sites that can help. Don’t give up because the MP is the only cure. Steroids only mask the symptoms.

Patricia, I hope Amy and Paul’s posts were able to give you the information you need to get started on the MP. Best of luck on your journey to good health.

]]> By: Amy Proal http://bacteriality.com/2008/07/18/interview24/comment-page-1/#comment-17919 Amy Proal Wed, 12 Aug 2009 01:03:25 +0000 http://bacteriality.com/?p=264#comment-17919 Hi Patricia, Thank you for writing. I know that when it comes to understanding the MP, there's a lot of information to digest. The MP is not a pill although it does involve taking medicines. The medicines are aimed at targeting chronic bacteria, which our research group believes are at the root of sarcoidosis. The Marshall Protocol uses a medication that activates the immune system (Benicar) along with pulsed low-dose antibiotics to kill bacteria. You can read more about the MP here: http://bacteriality.com/about-the-mp/ Here are the guidelines: http://autoimmunityresearch.org/phase1.pdf Here is a guide to getting started: http://mpkb.org/doku.php/home:starting I'm very sorry that you've had sarcoidosis for so many years. I've seen first-hand what a debilitating disease it is, and I know how much drugs like Prednisone can make you even sicker. I admire you for keeping your head up even when you are ill and continuing to try to look for a way to get better. That being said, it may be difficult for you to do the MP, because you would have to wean off Prednisone in order to begin the treatment. You need to work with a doctor while you're on the MP who would be willing to take you off Prednisone. Also, if we are right and bacteria cause sarcoidosis, your bacterial load has had a long time to grow to a high level. So, the bacterial die-off reaction (immunopathology) that you will read are associated with the Marshall Protocol may be difficult to tolerate. I don't want to tell you not to do the MP, but you should know that if you did try to do it, it would be very difficult. No matter what, I hope you can keep your positive attitude and thanks again for your support of our research. Best, Amy Hi Patricia,

Thank you for writing. I know that when it comes to understanding the MP, there’s a lot of information to digest.

The MP is not a pill although it does involve taking medicines. The medicines are aimed at targeting chronic bacteria, which our research group believes are at the root of sarcoidosis.

The Marshall Protocol uses a medication that activates the immune system (Benicar) along with pulsed low-dose antibiotics to kill bacteria.

You can read more about the MP here:
http://bacteriality.com/about-the-mp/

Here are the guidelines:
http://autoimmunityresearch.org/phase1.pdf

Here is a guide to getting started:
http://mpkb.org/doku.php/home:starting

I’m very sorry that you’ve had sarcoidosis for so many years. I’ve seen first-hand what a debilitating disease it is, and I know how much drugs like Prednisone can make you even sicker.

I admire you for keeping your head up even when you are ill and continuing to try to look for a way to get better.

That being said, it may be difficult for you to do the MP, because you would have to wean off Prednisone in order to begin the treatment. You need to work with a doctor while you’re on the MP who would be willing to take you off Prednisone. Also, if we are right and bacteria cause sarcoidosis, your bacterial load has had a long time to grow to a high level. So, the bacterial die-off reaction (immunopathology) that you will read are associated with the Marshall Protocol may be difficult to tolerate.

I don’t want to tell you not to do the MP, but you should know that if you did try to do it, it would be very difficult.

No matter what, I hope you can keep your positive attitude and thanks again for your support of our research.

Best,
Amy

]]> By: Patricia V. Ruffin http://bacteriality.com/2008/07/18/interview24/comment-page-1/#comment-17914 Patricia V. Ruffin Tue, 11 Aug 2009 03:25:32 +0000 http://bacteriality.com/?p=264#comment-17914 Can you please let me know if the MP is a pill or what? I am a little confuse on that part. By the way i have had sarcoid since i was 22 yrs. old . It happen to me after i finish my army duties in Korea it was a very dirt place for m e for those 13 months, I ended up being discharge because of the sarcoid got worster after going to Germany. I was sent by o the state side real fast. Now i am 56 and i am on 7.5 every other day . But i do see what you are saying but i don't know where to even start to get the mp so the doctors could see. I had a tumor in the brain so the doctors put me on mextrate for 8yrs. and predisones continue so because the brain tumor was sarcoid no one wants to take me off of the predisone because i have had too many relaps. It a hard illness to treat but i am holding on and praying that a doctor would find a cure. i don't wish this illness on anyone. The predisones mess with your mind also and depression is another story.thanks very much for your research and proof. Can you please let me know if the MP is a pill or what? I am a little confuse on that part. By the way i have had sarcoid since i was 22 yrs. old . It happen to me after i finish my army duties in Korea it was a very dirt place for m e for those 13 months, I ended up being discharge because of the sarcoid got worster after going to Germany. I was sent by o the state side real fast. Now i am 56 and i am on 7.5 every other day . But i do see what you are saying but i don’t know where to even start to get the mp so the doctors could see. I had a tumor in the brain so the doctors put me on mextrate for 8yrs. and predisones continue so because the brain tumor was sarcoid no one wants to take me off of the predisone because i have had too many relaps. It a hard illness to treat but i am holding on and praying that a doctor would find a cure. i don’t wish this illness on anyone. The predisones mess with your mind also and depression is another story.thanks very much for your research and proof.

]]> By: Paul Albert http://bacteriality.com/2008/07/18/interview24/comment-page-1/#comment-17850 Paul Albert Tue, 04 Aug 2009 12:50:48 +0000 http://bacteriality.com/?p=264#comment-17850 Hi Suzanna, Good for you! It sounds like you're doing the right thing. Allow me to give you a couple links from our new project the MP Knowledge Base: http://mpkb.org/doku.php/home:starting http://mpkb.org/doku.php/home:starting:physician:finding http://mpkb.org/doku.php/home:othertreatments:corticosteroids http://mpkb.org/doku.php/home:othertreatments:corticosteroids:weaningoffsteroids Hope these help! Best, Paul Hi Suzanna,

Good for you! It sounds like you’re doing the right thing.

Allow me to give you a couple links from our new project the MP Knowledge Base:
http://mpkb.org/doku.php/home:starting
http://mpkb.org/doku.php/home:starting:physician:finding
http://mpkb.org/doku.php/home:othertreatments:corticosteroids
http://mpkb.org/doku.php/home:othertreatments:corticosteroids:weaningoffsteroids

Hope these help!

Best,
Paul

]]> By: Suzanna http://bacteriality.com/2008/07/18/interview24/comment-page-1/#comment-17835 Suzanna Sun, 02 Aug 2009 13:26:52 +0000 http://bacteriality.com/?p=264#comment-17835 Hi Gene I read your article with great interest and would like to thank you for posting it and to wish you continued health. I was diagnosed with sarcoid last summer and have been ill since then, not being able to work for a year. I now have to return to work to pay my mortgage as my insurance will shortly run out and I am very concerned that I will not be able to manage it. I would very much like to try the MP as it seems to be the only treatment that isn't actually causing harm and may indeed effect a cure but I am concerned that the UK appears to be lagging behind the US in this field. My supposed "expert" consultant in London (a "centre of excellence" for sarcoid?!) instantly prescribed me prednisolone and more recently MTX too. I informed him I wanted to come off both and his answer was "well all your symptoms will return but if you want to come off these then feel free to do so." Some help huh? So I am down to 5mg of pred (from 30mg) and 7.5mg of MTX. Another couple of months and I can start the MP hopefully; inspired by your article I will look for someone in the UK who may have a bit more interest in my well-being! Thanks again and take care Suzanna Hi Gene
I read your article with great interest and would like to thank you for posting it and to wish you continued health.
I was diagnosed with sarcoid last summer and have been ill since then, not being able to work for a year. I now have to return to work to pay my mortgage as my insurance will shortly run out and I am very concerned that I will not be able to manage it. I would very much like to try the MP as it seems to be the only treatment that isn’t actually causing harm and may indeed effect a cure but I am concerned that the UK appears to be lagging behind the US in this field. My supposed “expert” consultant in London (a “centre of excellence” for sarcoid?!) instantly prescribed me prednisolone and more recently MTX too. I informed him I wanted to come off both and his answer was “well all your symptoms will return but if you want to come off these then feel free to do so.” Some help huh? So I am down to 5mg of pred (from 30mg) and 7.5mg of MTX. Another couple of months and I can start the MP hopefully; inspired by your article I will look for someone in the UK who may have a bit more interest in my well-being!
Thanks again and take care
Suzanna

]]> By: Marji http://bacteriality.com/2008/07/18/interview24/comment-page-1/#comment-17726 Marji Tue, 07 Jul 2009 02:58:20 +0000 http://bacteriality.com/?p=264#comment-17726 Gene-- I am so thankful for your story. I am very ill with a bunch of stuff that all started one day, as if with the onset of an illness. Now my immune system is beginning to break down and while I don't have aggressive cancer now, I've had one polyp and a bunch of areas of lit up lymphnodes that will probably end up being bad. I understand what you mean about the bacteria, and new "biologic" treatments frighten me. I look forward to getting with an MP doctor, it will be a long drive, but I think it is the only choice I have left. My liver isn't dealing with steroids well even anymore,let alone immunosuppressants, and they just make me much sicker and weaker. Your story really moved me. Its not just one thing, so many times the whole body just starts breaking down. I also liked that you were smart enough to question the meds the docs wanted to give you. I hope you are still doing well and stronger. Your story really helped me. Gene–
I am so thankful for your story. I am very ill with a bunch of stuff that all started one day, as if with the onset of an illness. Now my immune system is beginning to break down and while I don’t have aggressive cancer now, I’ve had one polyp and a bunch of areas of lit up lymphnodes that will probably end up being bad. I understand what you mean about the bacteria, and new “biologic” treatments frighten me. I look forward to getting with an MP doctor, it will be a long drive, but I think it is the only choice I have left. My liver isn’t dealing with steroids well even anymore,let alone immunosuppressants, and they just make me much sicker and weaker. Your story really moved me. Its not just one thing, so many times the whole body just starts breaking down. I also liked that you were smart enough to question the meds the docs wanted to give you. I hope you are still doing well and stronger. Your story really helped me.

]]> By: Kimberly http://bacteriality.com/2008/07/18/interview24/comment-page-1/#comment-17603 Kimberly Wed, 17 Jun 2009 07:16:23 +0000 http://bacteriality.com/?p=264#comment-17603 Gene, I was so moved and impressed by your story. Wow! You are an amazing survivor, who took your health into your own hands. How wonderful that you had a Doctor who was willing to stand by while you continued with the MP. I am considering starting the MP although I do not have any 'serious' illness at the moment....just Osteoporosis at age 47 (yikes!). It just makes a lot of sense to start getting rid of intracellular bacteria before a health crisis occurs. Blessings to you and your family, Gene! Kimberly R. Gene,

I was so moved and impressed by your story. Wow! You are an amazing survivor, who took your health into your own hands. How wonderful that you had a Doctor who was willing to stand by while you continued with the MP. I am considering starting the MP although I do not have any ‘serious’ illness at the moment….just Osteoporosis at age 47 (yikes!). It just makes a lot of sense to start getting rid of intracellular bacteria before a health crisis occurs.

Blessings to you and your family, Gene!

Kimberly R.

]]> By: Gene Johnson http://bacteriality.com/2008/07/18/interview24/comment-page-1/#comment-17551 Gene Johnson Tue, 09 Jun 2009 23:00:33 +0000 http://bacteriality.com/?p=264#comment-17551 Hi Elizabeth, Thanks for your kind words. I will be two years cancer free this month and after the next bladder scope my doc will allow 6 month inspections. He has been very cautious due to the aggressive nature of the cancer. The argument for a bacterial infectious (and contagious) cause of chronic disease continues to grow stronger and become more and more obvious once you start looking, especially within families. In my family, most have had some form of Th1 disease including breast cancer, Crohn’s disease, Parkinson’s disease (2), heart disease (2), Sarcoidosis, and diseases of aging. My wife has started the MP to treat IBS, CF, and other symptoms. I hope to convince all my family to use the MP as prevention if nothing else. I can’t thank Dr Marshall enough for having the brilliance to figure this out and the generosity to share it on the internet. I have been on the MP now for 31/2 years and except for the productive cough and SOB most of my symptoms have either resolved or improved. I plan to continue for as long as it takes. Dr M has said more than once that metastases does not seem to occur within the MP cohort, a large group of very ill people in which you might expect cancer to rapidly progress. Gene Hi Elizabeth,

Thanks for your kind words.

I will be two years cancer free this month and after the next bladder scope my doc will allow 6 month inspections. He has been very cautious due to the aggressive nature of the cancer.

The argument for a bacterial infectious (and contagious) cause of chronic disease continues to grow stronger and become more and more obvious once you start looking, especially within families. In my family, most have had some form of Th1 disease including breast cancer, Crohn’s disease, Parkinson’s disease (2), heart disease (2), Sarcoidosis, and diseases of aging. My wife has started the MP to treat IBS, CF, and other symptoms. I hope to convince all my family to use the MP as prevention if nothing else.

I can’t thank Dr Marshall enough for having the brilliance to figure this out and the generosity to share it on the internet.

I have been on the MP now for 31/2 years and except for the productive cough and SOB most of my symptoms have either resolved or improved. I plan to continue for as long as it takes.

Dr M has said more than once that metastases does not seem to occur within the MP cohort, a large group of very ill people in which you might expect cancer to rapidly progress.

Gene

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