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Jayppers
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Posted: Wed Aug 27th, 2008 22:00 |
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I am 26 years old, male, and homosexual.
I was put on a three month course of Accutane when I was 18 years old.
I struggle heavily with depression, anxiety, panic, crying spells, brain fog, very poor memory, very poor attention span and ability to concentrate, lack motivation, lost interest in things once loved, etc., etc.
Struggle to find refreshing sleep or deep sleep. Always wake feeling exhausted and unrefreshed.
I suffer strongly with what my doctors tell me is Irritable Bowel Syndrome (IBS). I am no longer able to produce any type of formed stool. There is considerable mucous in my stools at all times. There are also times at which there is visible fat and other apparently undigested food in my stool. I suffer with abdominal bloating most of the time and either abdominal discomfort or outright pain, which is usually accompanied by cramping and visible distention.
My colonoscopy showed 'indeterminate colitis'. 'Erythematous, granular, and congested tissue effecting 1/3 of my colon (down to the recto-sigmoid).' Biopsy returned negative for infection or Ulcerative Colitis (I do not have blood in the stool).
Had a upper GI endoscopy: no abnormalities found. Biopsies returned negative for H Pylori and Celiac.
Also had two abdominal CT enterographies, both returning nothing of significance (no inflammation, etc.).
Blood work was sent to Mayo Clinic in California for IBD testing. The results concluded that my blood did not match patterns consistent with IBD (yet I have obvious colitis that is apparent on physical observation).
Stool tests (I have had three now) indicate that I am 'curiously' a 'chronic carrier of a non-typhi strain of Salmonella.' At one time my stool culture also found a non-toxin producing form of C. Difficile. Both of these I have not been treated for after seeing an infectious disease specialist.
I struggle with very heavy fatigue, lack of energy, and get tired very quickly. Completing normal everyday chores and activities like driving to the market are difficult. Even walking short distances is hard. Climbing stairs has become quite a challenge.
I have an overall inability to gain weight. I am 142 pounds at 5 feet 11 inches. I previously would hover around 145 at least, but have not been able to increase to this weight for some time (which actually correlates with the time frame of me being unable to form any type of solid bowel movement).
Suffer with a chronic 'dry eye' condition where my eyes will burn and feel dry and irritated most all of the time. I have not been diagnosed as having Sjogrens, but small lesions around the front of my cornea have been seen by my eye doctors (where my eyelids close).
THIS POST IS UNDER CONSTRUCTION -- I'VE POSTED TO SAVE MY PROGRESS, BUT I WILL BE AMENDING THIS SHORTLY, INCLUDING MY D TEST RESULTS FROM BACK IN DECEMBER OF THIS YEAR.
MY GOAL IS TO DETERMINE WHETHER ANY PATIENT ADVOCATES BELIEVE THE DETAILS OF MY CONDITION ARE POSSIBLY INDICATIVE OF A TH1 INFLAMMATORY DISEASE
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Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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JRFoutin
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Posted: Thu Aug 28th, 2008 06:13 |
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Jason,
Welcome to the general questions site to learn more about the Marshall Pathogenesis and Marshall Protocol. I appreciate your thorough and thoughtful identification of your observations and of the tests you have undergone.
What is more important than whether an advocate believes you have an autoimmune/inflammatory condition, is what you and your doctor can determine with your existing medical history and D metabolites tests.
Is the Marshall Protocol an Applicable Treatment for my Disease? Lab details have the special section just for that, here:
Help with Understanding D-metabolite tests
Moderators will help you understand the values returned from lab tests in this forum I also recommend you frequently read Amy Proal's http://www.Bacteriality.com site. A good place to start is her recent presentation in vimeo (movie) format. Here is Amy's description and the link:
"In the following video, I explain the science that forms the backbone of the Marshall Protocol in simple terms. I discuss the bacteria implicated in causing chronic inflammatory disease, and explain how these pathogens affect the immune system. I also describe the basics of the treatment itself, providing information that any patient who plans to start the Marshall Protocol, or any doctor planning to put a patient on the MP, should understand. My narration is accompanied by slides with pictures and images of the pathogens and molecules I discuss. The video is 89 minutes."
http://bacteriality.com/2008/05/07/mpintro/ Best to you Jason--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Jayppers
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Posted: Thu Aug 28th, 2008 22:49 |
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Thank-you very much, Janet.
After writing and posting that message above, I realized that it wasn't really completely necessary, and I am now focusing on reading all that I can on the marshallprotocol.com and bacteriality.com websites. I have learned quite a bit, and the thoroughness of the protocol theory is so in depth, and it pains me to think that I have only most likely been exacerbating my problems with continual D3 supplementation over the past few years. " (
I have posted my previous D test results in the proper forum & format, but am currently looking for a physician to assist me re-test to get a more current picture, as well as a more accurate picture, by getting the D tests completed the MP way.
Thanks and wish me luck!
Best,
Jason
Last edited on Thu Aug 28th, 2008 22:50 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Jayppers
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Posted: Thu Aug 28th, 2008 23:09 |
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Is it known that Accutane has negative effects on D metabolism and/or the innate immune system? If so, I'm assuming the MP is the way to reactivate the immune from such damage?
Will food vitamin A or any retinal ester or analog bind to the VDR and inactivate it similarly to how 25OHD does?
Should vitamin A be avoided on the protocol (that is not from supplements)?
I'm not sure if this has any implication for the MP, but I was previously on Accutane (high doses of 13-CIS-Retinoic-Acid), and sometimes feel that it has a lot to do with some of my immune problems (in addition to L-form bacterial load).
If this is an inappropriate question, please let me know.
Thank-you so much and best wishes to you! " )
Jason
Last edited on Fri Aug 29th, 2008 00:39 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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JRFoutin
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Posted: Fri Aug 29th, 2008 05:49 |
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Jason,
You may find that eating a variety of MP-OK, real, simple foods and avoiding most supplements will work just fine as you get well.
Diet and Disease: Eating for Health
Foods to Avoid
MP Food Choices Simplified
Sometimes you have to remember that it isn't always a food, it is what a broken body does with it. Some start with sensitivities to one food or another and may need to find options that are not a problem with the MP.
When a similar question was asked, Dr Marshall said of vitamin A:
The metabolites of Vitamin A are very active, right throughout the body. At high enough concentrations it can displace the Vit D metabolites. But it performs important physiological functions in conjunction with Vit D, especially in VDR transcription. I would try to keep my Vit A consumption at about the RDA.
I hope that helps--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Jayppers
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Posted: Fri Aug 29th, 2008 17:11 |
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Thank-you very much, Janet. I appreciate the quotation provided from Dr. Marshall.
Question: How is it suggested that I obtain adequate vitamin A from my diet if most of the foods that have naturally preformed retinol (actual vitamin A and not beta carotene, b/c that is not true vitamin A) in them are not acceptable for the MP (i.e. liver, eggs, and other animal products that could also have vitamin D in them) and vitamin A supplements are also not acceptable on the MP (especially natural vitamin A from fish liver oil in supplement form that only states vitamin A in it - even though I understand there could also be unlabeled vitamin D in the product)?
Liver is a rich source of many nutrients and minerals, especially pre-formed vitamin A in the form of retinol, but I am concerned because it is listed as a no-no food for the MP b/c of vitamin D content.
With such extreme digestive problems, I worry about getting adequate vitamin A from my diet alone when excluding these foods, especially in light of the fact that beta-carotene conversion to vitamin A is reputed to be poor in people with chronic disease.
Thank-you so much,
Jason " )
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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JRFoutin
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Posted: Fri Aug 29th, 2008 20:26 |
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Jason,
It is common to begin the MP with a very focused perception of one or more nutrients for which published RDA exists. This usually results in a lot of posts on the topic, and the end conclusion that whatever the supplement was, one isn't going to be robbed of their life by doing what everyone else is doing to get well.
Also, I read Dr Marshall's quote more as a caution to not exceed RDA rather than an endorsement of the daily RDA requirement through supplementation.
Maybe, to answer "How is it suggested that I obtain adequate vitamin A from my diet...?" (and in full agreement that sick bodies aren't processing much correctly), the best answer might be to get well while eating the diet that has worked for others.
If you and your doctor determine you cannot live without a particular substance as you begin the MP because of a food sensitivity, then consider some rules of thumb that have worked for others in your situation:
- Start with as close as you can get to well-rounded, real-food, MP-OK diet.
- Keep it simple with one supplement and don't overdo it. Avoid multi-compound supplements.
- Get off the supplement at the earliest point in time that is rational. You might find you really don't need the supplement much at all soon enough (see #1, above).
Please review carefully:
Why do I have to stop my alternative treatment and avoid most supplements?
Best to you Jason--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Julia
Advocate (on leave)
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Posted: Fri Aug 29th, 2008 20:30 |
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Jason,
You can get vitamin A without vitamin D from unfortified milk, cheese and butter, and skinless chicken. I think you would still be making some from the beta-carotene in orange and yellow vegetables and fruits, unless your condition makes you unable to eat these. You don't need a lot - in fact, I understand it's easy to get too much, as it's fat-soluble and stored in the body.
Things like fish oil don't need to say vitamin D on the label, because it hasn't been added by the manufacturer - it's there naturally, in very high quantities.
Julia 
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Always consult a physician
Essential Info; FAQ; Julia's story
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Jayppers
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Posted: Mon Sep 1st, 2008 02:17 |
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Thank-you very much, ladies.
I appreciate the information. I'm afraid I'm still a little unsure about how to get adequate vitamin A, especially when I am intolerant of dairy products with my, at times, crippling digestive problems, but I guess I will figure this out some way or another. Fruits and roughage like veggies are also limited for me at this time since they tend to cause me a lot of increased gas and bloating and general aggrevation of my irritable bowel/colitis condition. Thank-you for the recommendations/suggestions though! " )
I have so much reading yet to do, and with so much anxiety and brain fog and such, it can be very challenging and daunting when seeing all of the links to threads, and links embedded into threads with so much information just everywhere on the MP study site.
I'm trying my best to get through it as quickly as possible, while trying to retain most of it. The brain fog is not helping. I just have to take it one day at a time and one link at a time and I will eventually get where I need to be.
I'm mostly focusing on the required reading and most specifically the documents and recommendations for my family physician. I am so nervous and scared to approach my PCP with this. I'm putting together a portfolio of documents now to prep. for our eventual meeting. My request is to at the very least order the correct vitamin D blood tests for me to at least rule out any vitamin D regulation problems (and subsequently any possibility of Th1 immune disease).
Question 1: I was previously taking very large daily oral doses of vitamin D3 supplements. Should I wait some time before approaching my doctor and requesting the D tests, so as to mitigate the impact of my high dose supplementation on my 25OHD level (and possibly allow it to come down some)? I've already read the "Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar?" post... I'm assuming that even if my 25OHD is elevated from prior D supplementation, and there is Th1 inflammation involved, then a high level of 1,25D will indicate this (assuming the sample was handled properly and tested at the Quest lab.). So, I think I may have answered my own question.
Question 2: Are there any patients in the study group who have previously been on the Acne medication Accutane, gone on the MP, and showed signs of improvement or even cure?
2a: Has Trevor Marshall made any statements regarding Accutane and how it may be involved in this whole Th1 process? There are many people who suffer with conditions very similar to Th1 inflammatory disease that were previously on the Accutane medication, but nobody knows yet how to reverse these problems (but I hope I may have stumbled upon it with the MP).
I know that I keep mentioning Accutane, but I keep thinking to myself that this medication had a lot to do with my current set of increased problems, especially my digestive problems and 'indeterminate colitis'. There are many documented cases of other Accutane patients developing IBD, IBS, and other severe digestive problems after using the medication, so I keep wondering to myself whether my problems are from the Accutane, or whether it is from Th1 inflammation, or whether the Accutane was involved in any way in the development of the immune system dysregulation and onset of Th1 inflammation. A very dear friend of mine also was on the medication and two years after developed IC (interstitial cystitis). I developed my severe dry eye and digestive problems the same time (about 2 years after the medication).
Question 3: Could my friend also possibly stand to benefit from the MP with IC, even if it truly is the result of being on the acne medication Accutane?
Question 4: My doctors tell my that I am a chronic carrier of a non-typhi strain of salmonella (and was previously told I have a non-toxin producing form of C. Diff. in my stool sample). Am I in the right line of thinking that this is probably a good example of a co-infection that is a result of my compromised immune system resulting from the Th1 pathogens placing such a load on it, and also from my additional unintentional immune suppression by way of D3 supplementation?
I'm really sorry if I'm blabbing and asking many questions. I am tired and fogged at the moment (and bloated and very upset and uncomfortable), and have so many thoughts going through my mind that I just had to sit down for a moment and get some of them out of my brain.
Thank-you so very much for your help and taking the time to review my post (or novel in this case) and inquiries. I wish the best to you and hope you have a wonderful and safe Labor Day holiday! " )
With love and immense hope,
Jason
p.s.: This was exhausting! I'm off to the couch now.
Last edited on Mon Sep 1st, 2008 02:20 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Julia
Advocate (on leave)
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Posted: Mon Sep 1st, 2008 15:25 |
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Jason,
First let me assure you that you are not alone here... not alone in having severe GI problems, not alone in trying to work out how everything started, not alone in finding the MP study site confusing, and not alone in struggling to put together a post and then collapsing for a rest.
Think of us as volunteer librarians. When you can't find the information you need, we'll guide you to the right shelf. We can't do the reading for you, but we can show you the titles most likely to be helpful.
I agree with Janet about the vitamin A question. At the moment getting enough of it is a minor issue compared with getting yourself back to a degree of health where your body can properly process the nutrients you put into it.
Question 1: I was previously taking very large daily oral doses of vitamin D3 supplements. Should I wait some time before approaching my doctor and requesting the D tests, so as to mitigate the impact of my high dose supplementation on my 25OHD level (and possibly allow it to come down some)?
No. It takes months for high 25-D to come down.
Question 2: Are there any patients in the study group who have previously been on the Acne medication Accutane, gone on the MP, and showed signs of improvement or even cure?
Many members have been cured of acne. Whether they were ever on Accutane I don't know. The only references to Accutane I can find are complaints from some that they trace many of their troubles to a course of it, or other related vitamin A treatments.
2 points here - some 'acne' is actually a manifestation of Th1 disease. And (the bad news  ) some members report acne as temporary immunopathology (herx), whether they've had it before or not.
2a: Has Trevor Marshall made any statements regarding Accutane and how it may be involved in this whole Th1 process?
As far as I'm aware, the statement Janet quoted above is all Dr M has said about vitamin A treatment. You might like to note that the Cochrane Review of antioxidant use to prolong life found (controversially) that vitamin A supplementation actually shortened life!
Question 3: Could my friend also possibly stand to benefit from the MP with IC, even if it truly is the result of being on the acne medication Accutane?
The MP heals the sick immune system so that it can do its job properly. Accutane didn't put the bacteria there, but clearly (for some people at least) it isn't helping the immune system to deal with them.
Is the MP an Applicable Treatment for my Disease?
Which diagnostic tests do I need?
Question 4: My doctors tell my that I am a chronic carrier of a non-typhi strain of salmonella (and was previously told I have a non-toxin producing form of C. Diff. in my stool sample). Am I in the right line of thinking that this is probably a good example of a co-infection that is a result of my compromised immune system resulting from the Th1 pathogens placing such a load on it, and also from my additional unintentional immune suppression by way of D3 supplementation?
Yup.
Will the Marshall Protocol treat co-infections?
Happy reading! 
Julia 
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Always consult a physician
Essential Info; FAQ; Julia's story
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Jayppers
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Posted: Mon Sep 1st, 2008 16:47 |
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Thanks, Julia.
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Jayppers
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Posted: Mon Sep 1st, 2008 19:02 |
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This past week I stopped my high level vitamin D supplementation and have avoided all D containing foods and have drastically cut out my sunlight and bright light exposure.
This weekend has been terrible. I feel absolutely awful. I am so lethargic and tired just all of the time. I have virtually no motivation to do just about anything.
Is this a result of stopping the D supplementation and avoiding sunlight and bright lights?
If so, is this a good sign or a bad sign?
Is it as though my body is responding... or withdrawing from the steroid like nature of the D I was previously providing my body?
Thanks so much for taking the time. Best wishes,
Jason
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Julia
Advocate (on leave)
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Posted: Mon Sep 1st, 2008 19:59 |
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Jason,
You have done a very effective mini therapeutic probe, and your reaction is a good sign that the MP is the way to go 
See Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar?
Now we need to make you a bit more comfortable until you can get the palliation of Benicar! Try not being so drastic in your avoidance of D - perhaps a little daylight and a little D in food - as you say, D is a steroid, and steroids should be weaned gradually.
Let us know how it goes...
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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wwspic36
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Posted: Mon Sep 1st, 2008 20:40 |
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Jason, I am a 60 year old homosexual man who has been on the Marshall Protocol for over four years. I had been sick since I was your age with STDs, gum disease, sinusitis, hives, extreme fatigue, etc. I had been diagnosed with gonorrhea, hepatitis B, abusive tooth brushing, allergies, and chronic fatigue.
At the beginning of 2003, I got really sick with night sweats, pain in my penis, headaches, extreme fatigue, flushed skin, etc. I could not get out of bed. I went to six doctors over eight months who all said that I was making up my illness and at best was suffering from slight LUPUS, histoplasmosis, allergies, and possible mental illness. The problem with this was I had been functioning before.
I found the Marshall Protocol on the internet and immediately knew it was the cure for what was wrong with me. I had responded to the various antibiotics before but was never cured. I though that I had picked up an STD in January of 2003 and felt really guilty about it. I now believe that I was sick way before and in January of 2003 I was exposed to additional infection that pushed me over the edge into chronic illness.
I have responded slowly to Benicar and the antibiotics. I was very light sensitive for several years. I still cover up when going outside. The pain in my penis has gone. My headaches are gone. My energy is better. My skin has healed. My gums are better.
I am working almost full time. I am sleeping for almost eight hours. I have running indoors on a treadmill and lifting weights. I never could have done any of these activities without the Marshall Protocol.
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Jayppers
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Posted: Wed Sep 3rd, 2008 00:55 |
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Thank-you, Julia, again. I appreciate your feedback a lot.
Thank-you also, wwspic36, for sharing your story with me. I am glad you took the time to share that with me.
At the moment I can't respond very intelligently, or the way I want to, because I am in so much pain from my colitis/IBS. I think dropping the D completely has really produced a very quick response by my body. It feels like knives are moving through my intestinal tract, and I am experiencing a lot of increased burning and pain in the area where my colitis was recognized.
Today I have been fairly depressed because none of my physicians take many of my symptoms very seriously, and I have such a strong suspision that they will not consider the MP. They are very mucht the type to just attribute most things to simply being 'all in my head.' They will prescribe anti-depressants or anti-pshychotics at the drop of a hat " (
I contacted one of the MP recommended doctors suggested to me from the site, but he told me that he would be 'slow to suspect Th1 disease.' He thinks I should treat my non-typhi salmonella and non-toxin producing C Diff and then have a comprehensive stool analysis done afterwards before thinking anything about the MP. But my three doctors (infectious disease specialist, gastroenterologist, and primary care physician all did not suggest that I treat these with medication). So, this makes me either question my current set of doctors, or this doctor that was recommended to me.
I'm so confused and I am am starting to see that light at the end of the tunnel get further away. I am going to do my best to keep my hopes up and try to get into the right frame of mind that I should, at the very least, see if my current doctor will re-test my D metabolites... give him the chance before resorting to another doctor. I need to stop being so pessimistic, but it's so hard when I can just imagine the look of my doctor's face when I make the proposal/request to him *sigh*.
No questions really - I just didn't know where else to turn and had to get some of these thoughts out of my head this evening.
Thanks and best wishes to you all.
Jason
Last edited on Wed Sep 3rd, 2008 02:03 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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Julia
Advocate (on leave)
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Posted: Wed Sep 3rd, 2008 10:25 |
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Jason
Don't give up, and don't waste your sighs imagining the look on your doctor's face, because things can change remarkably quickly. My doc wouldn't give me the MP at first, and the look on his face (and mine!) the day he changed his mind is what I like to remember
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Jayppers
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Posted: Wed Sep 3rd, 2008 15:59 |
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Thanks, Julia, as always.
I'm trying to keep my head-up and not worry so much about how the doctor will respond. I just need to take it one thing at a time and first approach him with my request to have my D metabolites tested again, and correctly. The worst he can say is 'no.'
If he says no, I'll just cross that bridge when I get there.
Thanks and best wishes,
Jason " )
Edited: I've taken the first step by scheduling an appointment with my primary care physician to request my vitamin D metabolite test. It is on Monday. So this will give me time to prepare my documents and also think about how I'd like the conversation to go. I can do this... just gotta put one foot in front of the other. Wish me luck!
Last edited on Wed Sep 3rd, 2008 16:47 by Jayppers
____________________
Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
|
JRFoutin
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Posted: Wed Sep 3rd, 2008 21:42 |
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Jason,
D acts like a corticosteroid to suppress immune response.
Your doctor should know that Benicar acts on the molecular nuclear receptors to help control what your immune system is doing when it is enabled by removing steroids.
Please consider Dr Marshall's medical publications as primary evidence. Some I particularly appreciate:
New paper: Vit D discovery outpaces FDA decision making.
FullText Preprint available here.
Correspondence fulltext preprint is here.
'Days of Molecular Medicine' - Abstract Presentation, 22-24 May, 2007
"Molecular mechanisms driving the current epidemic of chronic disease"
John Curtin School of Medical Research, Wed 15 Nov, 2:30pm
Finkel Lecture Theatre, ANU
FDA CDER 'Visiting Professor' Presentation, March 7, 2006
Your D test results (if done correctly) will second the reports of this cutting edge science, with the insights of a trained nurse moderator replying to your results when you post them here:
Help with Understanding D-metabolite tests
Moderators will help you understand the values returned from lab tests in this forum
Best to you Jason--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Jayppers
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Posted: Thu Sep 4th, 2008 01:44 |
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Thanks so much, Janet! I appreciate your thoughts and the links you provided.
Part of me feels so smart after researching health and especially the MP research, and I fear that I won't start in on my discussion properly and some things might just go straight over my Doc's head.
I've put together a binder with the main professional looking physician's guide to the Marshall Protocol, a print of the segment of the Vitamin D News book co-authored by Trevor, which explains much of the vitamin D science and implication of inflammtory disease, as well as a few of the patient interviews from Bacteriality, where the patients had colitis and/or IBS related symptoms. I'm also in the process of compiling a symptom sheet for myself so that I can express why I am approaching him with my suspicion of Th1 inflammation.
This is all I've put together right now. I am also going to print Trevor's BioEssay and include that as well -- thanks for that link, Janet -- I had forgotten about that.
Question: Does anyone have any suggestions for how I might structure my conversation/approach to my doctor? Especially my introduction. How do I start of the conversation? Should I begin with the inability for any of the doctors to pin-point the cause of my illness or provide me with any symptom relief, yet there exists physical abnormalities (like colitis, visible dry eye, pathogens in stool culture) that suggest more is at play than simply 'IBS' and 'depression'.
I want to keep my discussion simple and straight forward, but with the MP, it seems that there is so much to cover and discuss, especially if my Doctor is not framiliar with the MP, etc. I don't want to come off as though I am just on another rant of craziness to explain what my doctor may put off to being all in my head -- I want to try and convince him otherwise, at least far enough to get him on board to re-test my D metabolites.
Any suggestions would be greatly appreciated.
Thanks so much everyone! Take care and hope to hear from you soon.
Jason " )
P.S. -- I lost my sunglasses today " (
Last edited on Thu Sep 4th, 2008 01:50 by Jayppers
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Pre-MP | Reading, learning, and searching for MP doctor
09/24/08 | 25OHD = 40 ng/ml (down from 63 12/2007)
09/24/08 | 1,25OHD = 78 pg/ml
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Posted: Thu Sep 4th, 2008 22:09 |
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Jason,
You might assure your doctor about the problem of not really being able to pinpoint a specific name for your condition, as you also point out that the solutions you have patiently tried as a patient are trying your patience (wink) so you did some checking around.
Tell your doctor you were not satisfied with most of the drivel on the internet and self-help solutions. Most of those are distractions and you could see right through them.
Tell your doctor that you went beyond the first level of checking with an eye to see some cold hard non-subjective science evidence as well as proof-of-concept mass of humanity getting better. People that couldn't possibly have known each other before they also took on the science of this century, or have the same doctor.
Then you can lay out one or two, not all, of the published medical papers, carefully choosing those that answer a lot of questions in the shortest period of time, with a responsible reference list. I particularly like:
New paper: Vit D discovery outpaces FDA decision making.
FullText Preprint available here.
Correspondence fulltext preprint is here.
I like it because it addresses the core issues of the science, as well as issues that have confounded consensus and blocked your doctor from knowing about this discovery before you did. It also has a wonderful correspondence dialog, and it is recent.
Then I would have a well organized folder of other articles and be prepared to answer your doctor's questions with another document or two if you can't point immediately to an answer in the body of the article above. Answer with documentation until your doctor gets the idea that you haven't considered this lightly and you have done your homework well.
It may be the most important business meeting you will ever prepare for. So it isn't just a matter of dropping a ream of paper on your doctor's lap, it is a matter of knowing enough of the MP and where the answers are.
If you get stumped, then please pull out a little pre-prepared colored card stock that has http://www.autoimmunityresearch.org clearly printed, with the instructions "click Medical Professional Login in upper right corner of screen" Your doctor can apply for membership to ask questions at the source.
Then roll up your sleeve and request the D blood tests. Tell your doctor that a simple blood test, done right, can help your doctor know pretty quick if the science can be substantiated or not. Your doctor should understand that.
Beyond that, there is a therapeutic probe option that your doctor can ask about as a member of the medical professionals forum or that is described in the Marshall Protocol Phase 1 Guidelines.
Best to you Jason--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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