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switters
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Posted: Sun Aug 24th, 2008 15:17 |
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I recently discovered the Marshall Protocol and have been reading a lot on the Marshall Protocol site and Amy Proal's Bacteriality site.
More questions will likely follow, but at present I have two:
1. Can someone point me to testimonials for people with Crohn's disease that have recovered using the MP?
2. I am skeptical of the claims that long-term use of multiple antibiotics is "safe". There is a huge body of research, most of it recent, demonstrating the importance of intestinal bacteria in maintaining human health. Obviously antibiotics of any kind, especially broad spectrum drugs like minocycline, will kill probiotic bacteria in our guts along with pathogenic bacteria. Can someone please address this concern?
Thank you.
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Rico
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Posted: Sun Aug 24th, 2008 15:43 |
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These may interest you...
Crohn's Disease and Th1 inflammation
Won't the bacteria become resistant to the antibiotics if I take them a long time?
Interview with Chris Eastlund - diabetes, sarcoidosis, irritable bowel syndrome
As far as I know, no one on the MP has suffered any drawbacks from taking long-term low-dose antibiotics. Here are MP success stories, all of whom have been on long-term low-dose antibiotics:
Marshall Protocol Success Stories
What degree of healing is possible using the Marshall Protocol?
You may want to get your D-Metabolites measured.
What is the Marshall Protocol?
Simple Explanations
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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switters
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Posted: Mon Aug 25th, 2008 04:01 |
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Thanks for your response.
It's not so much antibiotic resistance I'm worried about, though that is indeed a concern, but the fact that dysregulated gut flora has been shown to be a contributing factor or cause of Crohn's disease. And long-term antibiotic use will almost certainly dysregulate the gut flora.
I understand that according to this point of view, L-form bacteria and vitamin D are causing the Crohn's in the first place. If this is true, then perhaps the benefits of the antibiotics (killing L-form bacteria and strengthening the immune system as a result) would outweigh the negative consequences (screwing up the gut flora, which constitutes 70-80% of immunity).
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Rico
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Posted: Mon Aug 25th, 2008 12:49 |
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Consider these ...
Should I take probiotics?
Pondering Probiotics at Bacteriality
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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switters
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Posted: Thu Sep 4th, 2008 16:18 |
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| One question: I posted a message on the "Request for Doctor's" thread asking for a list of doctors in the SF Bay Area about a week ago, but haven't heard anything back. I'd love to receive that list if possible.
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switters
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Posted: Fri Sep 5th, 2008 03:34 |
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My physician is very holistic in his approach. I think he may be open to using the MP, as he has been willing to experiment with other treatments I've made him aware of in the past.
What would you recommend I send him to familiarize him with the MP? Which document has a description of the Marshall pathogenesis and protocol that is thorough enough to acquaint him with the science and concise enough not to overwhelm him?
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natalie17
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Posted: Fri Sep 5th, 2008 05:55 |
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Hi Chris,
I suggest giving the following to your Doctor;
"What is the Marshall Protocol?"
Essential Information About the Marshall Protocol
Papers for Physicians
Letter of introduction for your MP supportive doctor
As well as the Phase 1 guidelines (initial first step).
As well as suggesting your doctor join the Professionals' Forum .
(s/he can ask any questions s/he likes in there).
You may also like to see Suggestions to get your doctor on board with the MP
If that is too overwhelming, and your Doctor has a spare 90 minutes to watch a video, Amy Proal's Intro to the MP Video is great and simple.
If your Doctor agrees to treat you -
D-metabolites tests
Blood tests will help you and your doctor determine your Th1 disease status.
Your Doctor may liek to try a therapeutic probe;
What is a therapeutic probe?
I suggest giving your Doctor as much information as possible, after all, s/he is responsible for your care, adn it is important s/he understand the protocol as much as possible.
Natalie 
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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switters
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Posted: Fri Sep 5th, 2008 15:27 |
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Looks like this might be useful too:
http://www.ginariggio.com/MP/phase1guide.html
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switters
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Posted: Sat Sep 6th, 2008 00:06 |
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I received the list of doctors and am very grateful. However, I have no idea which doctors actually have experience with the protocol vs. those who simply might be open to it. Is there any way to find out (i.e. from current MP patients in my area) more about these doctors?
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switters
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Posted: Sun Sep 7th, 2008 00:26 |
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I just watched one of the DVDs with Dr. Marshall talking about the science behind the MP. At the end of the presentation, he mentioned that doing a therapeutic probe with 25,D levels above 20mg/dl might produce a "false negative" because of the immunosuppressive effects of 25,D.
So, should I try to lower my 25,D level below 20mg/dl before starting a probe?
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Chris
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Posted: Sun Sep 7th, 2008 01:30 |
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Doctor list: Contacting folks in your own area is the only way to find out the details about which doctor might be enthusiastic about he MP.
Therapeutic probe: Getting your D down below 20 will likely better allow herx to occur. But that's a two-edge sword, in that you could encounter very strong herx if you try to rush things.
Simply going dark, or starting benicar, or both have induced enough of a herx for some to conclude that the MP was going to work. These steps alone can cause dramatic hormonal shifts. Healthy folks don't react to either step.
One of the problems with the MP and Crohn's is that the herx can be really nasty. 'Flaming butt herx' was one person's term for it. Bloody, explosive diarrhea with prolonged cramping was probably the least tolerable of the various herx I encountered.
You have a diagnosis of Crohn's. I would not start worrying about the fine print of a therapeutic probe until you have the D-Metabolites test in hand. The odds that it will show 'healthy' are pretty small.
-- Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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switters
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Posted: Sun Sep 7th, 2008 01:57 |
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Chris,
Thanks for your response. I do have a Crohn's diagnosis, but I do not and have not ever had diarrhea as a symptom. So perhaps (me crossing my fingers) I won't experience that as IP.
On the spectrum, I'd say my disease is moderate. Pain, gas, bloating and fatigue are the main symptoms, along with systemic inflammation. But I get by without taking any drugs, I've never been hospitalized, and aside from a psoriasis-like rash I just developed recently I've never had any serious extra-intestinal manifestations.
I'm hoping that because of this, my IP may not be as severe as others with CD who are much worse off than me experience. But who knows until I try. I'm going to try to get my D-metabolites tested next week.Last edited on Sun Sep 7th, 2008 01:57 by switters
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Chris
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Posted: Sun Sep 7th, 2008 02:17 |
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I do wish you luck. My diagnosis wasn't Crohns, just sarcoid with the complication of irritable bowel syndrome. You can't always predict the herx, which is why I suggested caution in the probe or phase 1, or in the case of Crohn's, caution all the way.
--Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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switters
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Posted: Sun Sep 7th, 2008 02:32 |
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I'm going to have a very hard time restricting light, and that's one of my major concerns about the MP. I'm going to grad school and I have no control over my environment there. I live in a shared house, and I have some control over certain rooms, but not the entire home.
Just to clarify: it is possible to begin the probe if 25,D levels are above 20mg/dl? I guess the results aren't as conclusive that way, though. If I have IP, I know there's Th1 inflammation. If I don't, I can't say that I don't have IP, because the 25,D could be suppressing the immune response, and thus the IP.
I read elsewhere that someone who started the MP went for a few months without any IP, until their 25,D level dropped below 20mg/dl.
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Julia
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Posted: Sun Sep 7th, 2008 15:50 |
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Chris,
Your D test results will show whether you have Th1 inflammation. Our expert nurse moderators can assess whether the MP will help you - How to post your D-metabolites tests results. Doing a therapeutic probe is only necessary if you can't get D tests done.
Julia 
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Essential Info; FAQ; Julia's story
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switters
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Posted: Sun Sep 7th, 2008 16:56 |
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It seems to me that I have read elsewhere on this site, or perhaps on the MP site, that the D-metabolite tests aren't conclusive determinants of whether one is a candidate for the MP. I recall one post saying that if you have a disease that is known to be mediated by Th1 inflammation (like Crohn's), then you are "automatically" a candidate and both the vitamin D tests and therapeutic probe are unnecessary.
Am I mistaken?
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Julia
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Posted: Sun Sep 7th, 2008 22:42 |
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| Yes, you're right, and having a diagnosis such as biopsied sarcoidosis makes you automatically a candidate for the MP. But try persuading a doctor of that! If tests don't convince, sometimes doc can be persuaded to do a probe, which is a standard treatment option.
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switters
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Posted: Wed Sep 10th, 2008 01:14 |
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Is it possible to get on the waiting list for the study cohort? What is the approximate wait period?
I've called all of the docs on the list that are within driving distance to me, and only one has experience with the protocol. He hasn't had great success with his patients on the protocol, so he wasn't very enthusiastic. I have no idea if he's following it closely or not.
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JRFoutin
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Posted: Wed Sep 10th, 2008 01:48 |
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Chris,
One thing is certain, if you don't apply for membership, you won't be considered for it. So yes, that is a step you can take.
See MP Memberships Temporarily Closed for instructions.
You are correct that you cannot tell if any doctor is following the Marshall Protocol closely. Good for you! Now you know that you can make sure you understand all you can about it (ie, READ) so you can partner with a doctor who must monitor your health, confer with you about your progress, prescribe, and participate in joining the private Professionals' Forum (always open to doctors).
Doctors have a lot to juggle in their head at any one time with any one of their patients. If you stay abreast of all possible information about the Marshall Protocol, then you can help ask the right questions if something doesn't seem to be MP directly (this can happen, and easy enough to address if you are prepared).
Best to you Chris--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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switters
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Posted: Wed Sep 10th, 2008 23:03 |
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I have called all of the doctors who are within driving distance to me on the list I received. Only one of them has any experience with the protocol at all, and he is prohibitively expensive ($550 for the initial consultation).
I read somewhere that there's a doctor in the U.S. who is both enthusiastic and experienced with the protocol, and who also accepts long-distance patients. Does anyone know who I'm talking about? If so, could you PM me that information?
I'm desperate to find someone I can work with.
Chris
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