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What Causes Sarcoidosis?
 Moderated by: Prof Trevor Marshall Page:  First Page Previous Page  1  2  3  Next Page Last Page  
 

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Seth
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 Posted: Sat Aug 6th, 2011 04:58

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"we cannot on the basis of our present knowledge.."

- See? The problem is, you try and tell someone, "Ok, sit down and listen for a minute. I have a good one here, and if you are prepared to throw all your old thinking out the window for just one minute you might see that it makes sense", and they come back with "laboratory studies have not been performed" (help me out and do some), "the treatment carries the risk of serious side effects" (er, worse than steroids?), and "vitamin D deficiency", "risk of development of.." and "risk of..", "risk of.." ("You can get killed walking your doggie!" - Al Pacino).

People find it so hard to let go of existing, ingrained 'knowledge', let alone align themselves with something they are unsure of. They could choose not to believe in the moon and stars because they might not understand how they work, but the moon and stars might still exist anyway.
It is a shame that mainstream medicine is almost like a religion. Mostly, people are not taught to question the things they are told. The balance of power is held by perception only. All that people have to do is question it, and it's shortcomings are evident.

Someone should say to all graduating med students, "Doctor, please! Peer pressure is tough, we know (we were all kids once), but be an independent thinker for a minute!"

Dixie,
Can you drop the Bactrim and feel better? It might mean your healing process will take longer, but you'll get there in the end. It sounds like the pure olmesartan might make quite a difference (maybe better palliation) to the people like yourself that are experiencing strong reactions to abx.
I'm going to start on a small dose of Bactrim soon, so that'll be interesting!


Note from ADMIN: I edited out comments here about religion. You may discuss religion in the "Lifestyles" area , although it is discouraged as some of our members are quite passionate about their beliefs. This is Trevor's "perspective" and is watched by hundreds of members who want it to focus on the MP science, please.

Last edited on Sat Aug 6th, 2011 05:32 by



____________________
Sarcoidosis |dx-Sep'09|Ph1-Mar'10|Ph2-Jul'10|Ph3-Jan'11|O-only-Aug'11|bone marrow biopsy|splenomegaly,lungs,joint/muscle/stomach pain,sweats,fatigue,headaches,mood swings,brain fog |25D<10ng/ml-Dec'10-June'11| Splenectomy June 2016. DEATH TO THE BUGS!
Deedee
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 Posted: Sat Aug 6th, 2011 07:58

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TM thank you for posting the most recent Chen/Moller paper. It is important for us to have these types of discussions. Many of us read research and having the analysis of the research team is very helpful.

I find it interesting that the recent paper gives repeat nod to a bacterial link, if only as a "trigger." However, much research continues to be centered around around statins, designer steroids, nicotine patches, etc.... Of course, we know the research is often funded by drug companies and orphan drug tax breaks in order to find new ways to develop and market drugs, and therefore, the research is not truly driven by motives to find the cause and cure for a disease. No research gets done by universities or research facilities without funding and there is nothing "in it" for the drug companies to fund research based on old cheap antibiotics and Benicar (which is almost at the end of it's patent.)

However, For Moller and Chen to keep pushing steroids and not working harder to understand the "bacterial links" and the science of the MP is unfathomable. The suffering they had to have witnessed over the years is incalculable, and how they can sleep at night without turning over every rock in a quest to find the cure is unimaginable. Much science is discovered accidently by observing what works even when an full understanding is not known. Why not at least observe the MP, Drs Moller and Chen? Why not give your patients the option of trying an "unproven and controversial treatment" since according to you, no treatment exists anyway? The imagined negative side effects of the MP are certainly no worse than the proven side effects of steroids, methotrexate and other immune suppressing sarcoidosis treatments.

Since by their own accounting, "there are no clinically useful biomarkers that can assist the clinician in diagnosis, prognosis or assessment of treatment effects." and no "FDA approved therapy", I am all the more convinced that the personal improvements (labs and symptoms) I have realized while undertaking the MP is all the evidence I need that the treatment works. Certainly, I do not plan to sit back and deteriorate to the point I "need" steroids to (temporarily) avert organ failure because our main-stream researchers can not get their head around the science of the MP. I am just truly sad and sorry that decade after decades continues to roll away as more and more suffer and die because of a disease that has an effective treatment, but that continues to be ignored by our main-stream researchers.



Thanks for the post.

Last edited on Sat Aug 6th, 2011 08:08 by Deedee



____________________
06/08 Sarc in lymph nodes. Chronic high lipids. 2010 heath cat scan-zero plaque. 11/12 D8, 12/12 Normal CXR except scarred lymph node, normal PFTs 8/12 Off all MP meds. Metabolic Syndrome
Prof Trevor Marshall
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 Posted: Sat Aug 6th, 2011 15:08

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Deedee,
There is one thing I think you are missing - that corticosteroid treatment works well (at least in the eyes of Dr Om Sharma, whose website makes clear is amongst the leading sarcoidosis expert in the world). Dr Sharma gave a presentation on Sarcoidosis at the 2005 WASOG Patient Conference in Denver, and you can look over his presentation at the special MP-members site:

http://marshallprotocol.com/flash/sharma.html

You can see that when he is talking about the liver disease receiving "no treatment," he takes as-given that the patient is of course on prednisone anyway, as almost all his patients are. That is the base therapy. As he says later "things got worse because the patient didn't take the medicine" when describing a graph which shows a patient having problems with prednisone. Of course there is no problem with  the drug - it works great - it is simply that the patient wouldn't take it. No consideration of why the pt couldn't tolerate the drug, of course.

I hope this excerpt from the conference DVD gives you a little insight into the other side of the track - why the patients get worse - it is because they don't take their medicine. At least, that is my interpretation of what he is thinking, your thoughts are welcome.

..Trevor..
ps: the disclaimer at the beginning of the video was apparently because members from the MP cohort were in the room, trying to chat with patients and physicians at the meeting.
 

Deedee
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 Posted: Sat Aug 6th, 2011 19:39

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I will have to view this from another place other than my home. I have Hughes net and the system will cut me off if I watch a long video. I started to watch it. I see it is from 2005.

I have seen some more recent papers suggesting that unless sarcoidosis is threatening organ function, it should be avoided.

This one states up to 70% of patients relapse following steroid treatment:
http://chestjournal.chestpubs.org/content/111/3/623.full.pdf

Perhaps steroids are not as quickly prescribed as they once were, at least by some physicians. I know that more are certainly questioning the wisdom of prescribing it to everyone with a sarcoidosis diagnosis. Here is something from 2011 from Judson http://emedicine.medscape.com/article/301914-treatment
Corticosteroids are the mainstay of therapy.
Generally, prednisone given daily and then tapered over a 6-month course is adequate for pulmonary disease. Earlier recommendations suggested an initial dose of 1 mg/kg/d of prednisone; however, more recent expert opinions endorse a lower dose (eg, 40 mg/d), which is tapered to every other day long-term therapy over several weeks. Most patients who require long-term steroids can be treated using 10-15 mg of prednisone every other day.
Data suggest that corticosteroid use may be associated with increased relapse rates.
Occasionally, certain patients cannot tolerate or do not respond to corticosteroids...........

For pulmonary disease, asymptomatic PFT and/or CXR abnormalities are not an indication for treatment. In patients with minimal symptoms, serial reevaluation is prudent. Significant respiratory symptoms associated with PFT and CXR abnormalities likely require therapy. For such patients, treatment is indicated if objective evidence of recent deterioration in lung function exists. Corticosteroids can result in small improvements in the functional vital capacity and in the radiographic appearance in patients with more severe stage II and III disease.

One recent study demonstrated an approach that may minimize the use of corticosteroids without harming the patient. This is accomplished by withholding therapy unless the patient shows at least a 15% decline in one spirometric measure associated with increasing symptoms or, if asymptomatic, withholding therapy unless the patient shows worsening PFTs and a change in CXR.

--------

I appreciate everything you do for all of us, and for giving us all an alternative to steroids and a treatment that actually works.



____________________
06/08 Sarc in lymph nodes. Chronic high lipids. 2010 heath cat scan-zero plaque. 11/12 D8, 12/12 Normal CXR except scarred lymph node, normal PFTs 8/12 Off all MP meds. Metabolic Syndrome
Dixie
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 Posted: Mon Aug 8th, 2011 07:41

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Seth,
I think that I sent you a response to this already, but I can't find
where I replied.  I was going to try and keep my abx where they were
until Friday because I have a Skype consult with Dr. Blaney on that
afternoon.  I have decided not to wait until then because of my
symptoms.  You know, it's really difficult to explain, but since
starting the slightest, and I mean slightest, amount of Bactrim, I've
had some terrible hurting, but somehow my back feels less tense.  I
just can't explain it.  But, the inability to sleep has gotten much
worse along with bowel and stomach issues and I've started with
drainage and itchy throat, so I have decided to cease the Bactrim.

I'll post after my consult with Blaney and let everyone know what he
suggests.  You know, sometimes I start to feel that I'm grasping at
straws.

Thank you for your suggestion.

I look forward to hearing from you again soon.

Dixie



____________________
MP Oct.09/no breaks/Neuro Sarcoidosis, scleroderma,Sjogren's, Hashimoto's, borrellia, hypertension, skin tissue atrophy, dystophied muscles, mouth sores, headaches, vomiting 25D=8
Low WBC, High RBC, Numbness in face and limbs
Dixie
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 Posted: Mon Aug 8th, 2011 07:43

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Seth,
I can't discern the herxing because I was so symptomatic when I
started MP.  I am able to tell that the Bactrim has caused some
increase in symptoms and it always concerns me that it's disease
progression.

You'll have to let me know how the Bactrim goes with you.  I will be
interested in what you experience.

Thanks.
Dixie



____________________
MP Oct.09/no breaks/Neuro Sarcoidosis, scleroderma,Sjogren's, Hashimoto's, borrellia, hypertension, skin tissue atrophy, dystophied muscles, mouth sores, headaches, vomiting 25D=8
Low WBC, High RBC, Numbness in face and limbs
Prof Trevor Marshall
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 Posted: Mon Aug 8th, 2011 09:24

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Dixie,
Please post your progress information in your progress thread, and not in my  "perspectives" forum. This is for discussion of science. not for discussion of progress. I hope you understand.

..Trevor..

Dixie
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 Posted: Mon Aug 8th, 2011 09:42

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Trevor,
Sorry. 

Dixie



____________________
MP Oct.09/no breaks/Neuro Sarcoidosis, scleroderma,Sjogren's, Hashimoto's, borrellia, hypertension, skin tissue atrophy, dystophied muscles, mouth sores, headaches, vomiting 25D=8
Low WBC, High RBC, Numbness in face and limbs
Seth
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 Posted: Mon Aug 8th, 2011 10:02

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Sorry if I got sidetracked back there.

I read that steroids have the effect of reducing the size of lymph nodes, etc. I'm assuming that includes the spleen, and from what I remember, it does so within a reasonably short period (over the course of steroid treatment).

On the other hand, if I started to eat a lot of food that supressed my immune system and started taking vitamin D, I get the feeling that it wouldnt have the same effect.

Obviously the steroids work through different pathways.

My problem is, with an enlarged spleen, I feel quite vulnerable. For example, I wouldn't feel confident to cycle anywhere, just in case of any kind of impact.
Martial arts are also definitely out until I'm more robust and have the energy, anyway.

I don't have much info on the reason for an enlarged spleen (apart from similar explanation for lymph nodes swelling), or why it is particularly enlarged (also more so than when I was first diagnosed).

Is the increased size just down to IP? Is there anything to do to help my system remove the 'junk' from my lymphatic system?

I'm not keen on taking steroids for the obvious reasons, but is there, indeed, any dose of steroids that may be beneficial dealing with sarc, or do they simply supress our immune system too much to be helpful?



____________________
Sarcoidosis |dx-Sep'09|Ph1-Mar'10|Ph2-Jul'10|Ph3-Jan'11|O-only-Aug'11|bone marrow biopsy|splenomegaly,lungs,joint/muscle/stomach pain,sweats,fatigue,headaches,mood swings,brain fog |25D<10ng/ml-Dec'10-June'11| Splenectomy June 2016. DEATH TO THE BUGS!
Seth
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 Posted: Mon Aug 8th, 2011 10:35

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On further reading, it sounds like the prednisone definitely reduces lymphadema for patients.

I'm just curious, as it seems a short period in which to flush out the lymph system whilst on prednisone. The lymph nodes then appear to 'clog up' again once the drug is stopped, so does that not mean they've gotten rid of some 'junk' load?

Perhaps the steroid therapy in sarcies might work better in small pulses, just as the the pulsed,low-dose antibiotics seem to be more effective in the MP?

Last edited on Mon Aug 8th, 2011 10:49 by Seth



____________________
Sarcoidosis |dx-Sep'09|Ph1-Mar'10|Ph2-Jul'10|Ph3-Jan'11|O-only-Aug'11|bone marrow biopsy|splenomegaly,lungs,joint/muscle/stomach pain,sweats,fatigue,headaches,mood swings,brain fog |25D<10ng/ml-Dec'10-June'11| Splenectomy June 2016. DEATH TO THE BUGS!
Prof Trevor Marshall
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 Posted: Mon Aug 8th, 2011 13:01

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Corticosteroid therapy in Sarcoidosis invariably ends in a one-way slow, painful, slide  to the grave.
 
Some years ago we tried to dampen MP Immunopathology with corticosteroids, leading to disastrous results. Don't even think about trying such a thing yourself, Seth.

Your spleen will shrink eventually, there really is no other alternative than waiting for your body to heal to the point you can start cycling again. As for martial arts - you may not be so interested in that once you get your life back :)
 
..trevor..
 

Deedee
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 Posted: Mon Aug 8th, 2011 16:51

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Why would you even consider something that would hamper your body's ability to fight the bacteria in exchange for a short-term symptom relief?

If you think about why your spleen might feel large, you will feel encouraged. As part of your lymph system, your spleen is processing lots of dead bacteria and debris. My spleen became quite swollen in the first year of the MP, with lots of spleen jabs. All that is gone now. In my (now) third year I never feel my spleen anymore and it has been months since my lymph nodes under my ears have been large. I also don't feel like my throat is swollen from lymph nodes.

A year ago taking tiny bits of Clindy caused severe muscle aches. Now that my bacterial load is down, I am on full dose Clindy with Deme and Mino and having very mild IP.

Healing on the MP takes time. But it is a h-e-a-l-i-n-g and not a steriod short-term symptom relief that will cause horrible side effects of their own, plus make your condition WORSE.



____________________
06/08 Sarc in lymph nodes. Chronic high lipids. 2010 heath cat scan-zero plaque. 11/12 D8, 12/12 Normal CXR except scarred lymph node, normal PFTs 8/12 Off all MP meds. Metabolic Syndrome
Seth
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 Posted: Mon Aug 8th, 2011 17:11

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Please remember that I said I don't want to take steroids.
I am getting a bit sick of this disease, but I'm not *so* impatient :)
I'd be just as opposed to a splenectomy.

But I thought I was asking valid questions. I kind of got some answers, geared at dissuading me from taking steroids. I haven't read anything about people trying a low steroid dose when on the MP, or any other therapy for lymphadema/splenomegaly. Cranial sacral therapy and lymphatic massage does help also, producing more IP, apparently.
I know already immunosuppressive therapies are contraindicated, but it is just a line of thinking - sometimes contradictory things DO add up to something completely different (Alloys, for example. Perfumes for another), and medical science is not always so cut-and-dried. I got some answers anyway.

I've been wondering for some time if the enlarged spleen is just due to IP.. I suppose I can only guess that it is. It is difficult to gauge sometimes whether anything is happening.

I was also hoping to get some feedback from anyone that had an enlarged spleen too. Apparently, it's not such a common symptom. So thanks Deedee for your input :)



____________________
Sarcoidosis |dx-Sep'09|Ph1-Mar'10|Ph2-Jul'10|Ph3-Jan'11|O-only-Aug'11|bone marrow biopsy|splenomegaly,lungs,joint/muscle/stomach pain,sweats,fatigue,headaches,mood swings,brain fog |25D<10ng/ml-Dec'10-June'11| Splenectomy June 2016. DEATH TO THE BUGS!
Deedee
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 Posted: Mon Aug 8th, 2011 17:26

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Seth, remember that steroids shut down your immune system and the MP awakens your immune system. It is not the antibiotics doing the work. They only augment your own immune system that has been reawakened by the Benicar and lowered Vitamin D. Taking steroids would "cancel out" the benefits of the MP, plus steroids cause their own serious side-effects such as bone loss, diabetes, weight gain, rage, and other serious problems.


The original topic was a discussion about the CAUSE of sarcoidosis. Doctors that prescribe steroids are not treating the cause. They are treating the symptoms caused by inflammation. Steroids have never cured anyone and there is some compelling research that suggests that taking steroids can even make you worse. That would make sense because your spleen might feel better, but the bacteria are having a field day multiplying while you immune system is shut down. No wonder that 74% of those who take steroids find their symptoms back within a few months after discontinuing the steroids,and no wonder that people who take steroids have worse outcomes than those that do not.


I used to take pain meds for my spleen pain and now I don't even know I have a spleen! Hang in there, friend.



____________________
06/08 Sarc in lymph nodes. Chronic high lipids. 2010 heath cat scan-zero plaque. 11/12 D8, 12/12 Normal CXR except scarred lymph node, normal PFTs 8/12 Off all MP meds. Metabolic Syndrome
Seth
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 Posted: Mon Aug 8th, 2011 17:50

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I didn't mean to make this about me being impatient with my spleen. Actually, my spleen (to anthromophise..) has no invested involvement in these posts either ;)

I was concerned about what causes the splenomegaly, which is part of the 'What causes sarcoidosis?' question, so I'm fairly on-topic, I hope. There seems to be little info on the actual cause of splenomegaly, so hopefully I am asking the question in the right forum.

Perhaps I wasn't asking the right question.

I do understand the mechanism of VDR supression and activation, so I'm not talking about doing contradictory things, I'm asking, as terrible as steroids appear to be (and are apparently reported to be), is there, without question, no *complementary* action?
I'm not talking about taking enough steroids to effect 'steroid therapy' or anything combined with antibiotics for example.

My point was, if you suppress your immune system (for example, with steroids), *it appears that* your body does clear out the 'junk' from your lymphatic system *fairly quickly*.
So, is that just normal bodily processes combined with the reduced output of dead bacteria, or is actually the steroids working via another pathway?

I'm guessing that it is the former explanation, but... well, there's my question.

If so, then the fact that my spleen (I should say "one's spleen") is still enlarged is due to the simple fact that it has been through a stage of being overloaded, and at some point it will hopefully catch up with it's workload..




____________________
Sarcoidosis |dx-Sep'09|Ph1-Mar'10|Ph2-Jul'10|Ph3-Jan'11|O-only-Aug'11|bone marrow biopsy|splenomegaly,lungs,joint/muscle/stomach pain,sweats,fatigue,headaches,mood swings,brain fog |25D<10ng/ml-Dec'10-June'11| Splenectomy June 2016. DEATH TO THE BUGS!
Prof Trevor Marshall
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 Posted: Mon Aug 8th, 2011 18:18

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Seth,
When you suppress the immune system, the body stops recognizing 'the junk' and so stops producing the inflammation (which the body generates to neutralize the source of 'the junk.')

The microbiota can thus proliferate without any interference from the immune system. The patient often feels better because the cytokine cascade disappears, Doc thinks all is well because the inflammation has receded, and everybody is happy - at least for a few years.

At this point the microbiota start to overcome even the suppressed immune system, and a 'relapse' occurs. The relapse also occurs when people stop taking corticosteroids, as the inflammation often floods back. The amount of prednisone a pt needs gradually increases as the microbiota flourish. For example, one non-MP sarcie (a message board administrator) was taking 130 mg of prednisone when he had a relapse, and died (in hospital) of pneumonia (acute infection). His body could not fight off the deadly infection, the immune response was too suppressed.

A similar situation occurs when people use the new, expensive, Biologic drugs to suppress their immune response. Here is a paper (just out) giving some idea of the risk - one serious acute infection on average every 10 years is what they found... So if you are expecting to live comfortably past the 10 years mark you are betting against the statistics :) Sarcies, on average, die 10-20 years beyond diagnosis (that is the number from WASOG, the sarc pulmonologists).

Hope that helps

..Trevor..

ps: have you noticed how the dose of Vit D being advocated by the zealots has slowly increased, year by year? Many of them gain their trust in Vitamin D by taking it themselves. They know that Vit D is good for them - they feel much better when they take it :X
 

Seth
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 Posted: Mon Aug 8th, 2011 18:45

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Trevor,

Yes I understand the explanation you've given.

But that doesnt really get to the crux of my question. I think I answered it myself anyway, but I feel as though my answer is still a guess..

It sounds like 'healthy' people can tolerate more or less VitD and/or sun exposure and they're ok (for now..). With the sick people the D situation is quite different.
A VitaminD 'pusher' might take a huge dose, flex his muscles, and say 'look, I'm ok!'. At the same time, there are also many people that get little D from diet or sun and they have no symptoms.
So it's hard to reason with the VitD pushers.. Maybe when they begin to get sick they will start to look for the truth.



____________________
Sarcoidosis |dx-Sep'09|Ph1-Mar'10|Ph2-Jul'10|Ph3-Jan'11|O-only-Aug'11|bone marrow biopsy|splenomegaly,lungs,joint/muscle/stomach pain,sweats,fatigue,headaches,mood swings,brain fog |25D<10ng/ml-Dec'10-June'11| Splenectomy June 2016. DEATH TO THE BUGS!
Prof Trevor Marshall
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 Posted: Mon Aug 8th, 2011 19:15

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Seth, those who benefit from taking Vitamin D must already have an immune dysfunction, or else they would not benefit from the immunosuppression they are inducing.

When you recover, you will probably find that you, like most of our members, have suffered from suboptimal health since childhood. Maybe a discrete illness couldn't be diagnosed, but people still suffer (unless they discovered Vit D's palliation). Suboptimal health is common in this day and age.

I am giving two talks soon which will go over these issues in detail. At the EPMA conference in September I will be talking about Public Health issues "Interplay between Microbiome and the Host's Immunity as a Factor to be used for Prediction," and at the Asian Congress on Autoimmunity in November I will be discussing "Why Vitamin D is more effective in early stage disease than in late-stage disease"

Hopefully these will fill in the remaining open issues in your mind :)

..Trevor..



Teresa Green
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 Posted: Tue Aug 9th, 2011 15:36

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Team,

I went to the Optometrist last week to get my very first prescription ( i'm 52 years old ) for reading glasses.   He was very impressed with the quality of my eyes, particularly with my ability to read in the distance.  I was able to read two lines below 20/20 vision.  However for reading I needed glasses, which he said was normal at my age.

I had told the Optometrist that I was suffering from Uveitus about two and a half years ago and that the Doctors put me onto steroidal eye drops until I found the Marshall Protocol.   The Optometrist said you are fortunate having found an alternative therapy, as he has seen others with uveitus on the steroidal treatment that went on to develop shocking eye problems.

It was only when I heard him say this that it dawned on me, what future I had avoided for myself.    How lucky I was to have stumbled onto the Marshall Protocol and spend the time to read firstly about the science and then the successes others have achieved.

Teresa

 

NWLinda
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 Posted: Sat Nov 5th, 2011 15:41

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It was only by the most bizarre coincidence that I ever stumbled upon the Marshall Protocol. I consider myself extremely fortunate to know about the MP.

Sarcoidosis is the ONLY diagnosis that makes sense of my seemingly non-related problems: all the white spots in my lungs that showed up on an x-ray, the bump on the back of one eye, my adrenal problems, the psychiatric problems endured by my family that have been handed down from one generation to the next, the inflammation on my neck, the otosclerosis that doctors said was "genetic," and who knows what else.

After being on the M.P. for 6 months last year, I quit and tried to find a natural approach to kill the bacteria. I used Rife machines and Bob Beck's electro-medical devices. I used homeopathy and (lame) attempts at alkalizing my body so the bacteria couldn't grow. Nothing seemed to do much of anything.

Now I'm back on the MP, killing off bugs in my middle ears, sinuses, eyes and elsewhere. And even though, quite frankly, it hurts, I'm so happy and grateful to be on the protocol, knowing that, at last, I've found a scientist who knows how to kill these L-form bacteria.

Thank you, Dr. Marshall. One day I hope all Americans learn about this awesome treatment. How sad that Max Planck's statement is still true about how the "Old Guard" has to die before new scientific findings become accepted. At least we have the internet, since doctors know so little about L-form bacteria and even less about how to kill it.

NWLinda



____________________
Linda
hypothyroid, otosclerosis, possible sarcoidosis in lungs, skin & one eye, pyroluria, low cortisol, heart palps. 8/10: 25D: 44, 1,25D:76 pg/mL; Ph I:8/24/10; Ph2:1/11; break from MP:3/11-10/11. 12/29/11: 25D: 15ng/mL. 1,25D: 42.1 pg/mL

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