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Mia Pella
Member
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Posted: Sun Mar 14th, 2010 01:52 |
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I was wanting to hear from anyone still on the marshall protocol and if you have had any success, failures or advise for me. Any response would be very much appreciated.
I was on the marshall protocol about 2 years ago and stuck with it for about 9 months but found my symptoms (psoriasis) getting worse and my doctor prescribing way too many meds. In the end I was on about seven or eight prescribed meds and my worsening condition, symptoms & gastric reflux was intolerable.
Now I am facing starting an experimental psoriasis treatment in the hope of some relief or going back to my naturopath and stripping back my food and taking lots of supplements again ! I have tried this many times.
I have tried treating the symptoms but I'd rather treat the cause, yet no one can tell me what the cause is. They think it is an autoimmune disease, but don't know what causes psoriasis. The Dr who started me on the MP didn't give me as much information as I really needed to cope with the treatment and symptoms, he referred me to the MP site and just kept prescribing more and more medications to every symptom I was having, which I hated taking as I knew my body would not cope with so many meds on a daily basis.
He also couldn't tell me what the name of the bacteria was. So I was unable to do any research or find any evidence of what I had. I felt it was a huge leap of faith on my part without much support from my doctor or the MP site. I tried to register for help but they couldn't take new members on the MP program. ( I probably just didn't know how to ask for effective help via the web medium. )
Thank you for your time in reading this.
Kind Regards,
Mia
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psoriasis hypothoroid joint pain, MP(March08)
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Carole
Board Staff
| Joined: | Sun Oct 21st, 2007 |
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| Posts: | 140 |
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Posted: Sun Mar 14th, 2010 03:03 |
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Welcome back, Mia! Much has transpired since your absence, so please refer to the following links for a "refresher course."  As you may remember, the fewer elements beyond the MP, the better. Please keep in touch! . . . Carole 
http://www.youtube.com/user/DrTrevorMarshall
http://www.oneradionetwork.com/dr._greg_blaney_-_l_form_bacteria_-_biofilms_-_th1_pathogens_-_mp_marshall_protocol_-_12.07.09/
http://www.oneradionetwork.com/professor_trevor_g_marshall_-__personalized_medicine_to_a_whole_new_level/
http://bit.ly/5QsNcc
While waiting for support from your own healthcare provider or as you seek a new physician, please study the following:
http://mpkb.org/doku.php/home:starting:prempchecklist
http://mpkb.org/doku.php/home:starting
Be sure you understand the Phase One Guideline. It will be your responsibility to see that your prescribing doctor is following the MP correctly.
You will also benefit from the reading more of the vast sources at http://www.bacteriality.com.
Both you and your physician will appreciate the publications and presentations in this link-- http://mpkb.org/doku.php/home:publications
Finally, utilizing the Google Custom Search option at the top of this screen will also prove beneficial as one seeks more information regarding the MP.
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Carole's Story
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k
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| Joined: | Fri Oct 19th, 2007 |
| Location: | Australia |
| Posts: | 216 |
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Posted: Sun Mar 14th, 2010 03:23 |
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Hi Mia
Sorry to hear you are so unwell and about your challenges with your health.
My thoughts on your experience are as follows:
* 9 months is not very long to be on the MP
* the MP necessarily makes you worse before you get better
* it sounds like your doc may not have understood enough about the MP given that you had such intolerable IP (which forced you to stop the MP) and he was putting you on so many other medications to manage the IP. (The Phase 1 guidelines recommend increasing Benicar, lowering abx and even stopping taking them immediately in the face of intolerable IP).
* Some of these others meds you were on may have been interfering with the efficacy of the MP.
The MP is continually being refined. For example, when you were here last time probably there was more emphasis on getting on the abx reasonably quickly. Now there is more emphasis on the Benicar rather than the abx. All the guidelines have also been updated.
In terms of support, the MP sites are all volunteer run by people on the MP themselves. The volunteers do the best they can to answer questions and share experience. But they cannot provide all the support that someone on the MP will need and are not a substitute for medical supervision.
There is a huge amount of information available on the multiple MP sites (this one, which is available for those not in the study site), bacteriality.com and the Knowledge Base
http://mpkb.mp-dev.com/doku.php/home
MPers really need to be pro-active in trying to locate answers themselves. I have been visiting these sites regularly for 3 years and it is not often that a completely new question is asked (granted, there are refinements to the MP so the answers do get refined at times). (I acknowledge that it can be difficult to navigate the sites and find what you are looking for - the MPKB was created to try and address this and is a work in progress).
You could also try to find out if there is a support group in your local area. Click on "Members" (green button, top right) to find people in Adelaide and then "private message" them (hover over their name with your mouse and left click, then select "Send a Private Message").
Regarding success stories, you can look at bacteriality.com and http://www.marshallprotocol.com
To find out specifically about psoriasis, use the google search engine at the top right hand side of this site.
I encourage you to do a lot of reading (start with the knowledge base site) to consider whether you will pursue the MP again.
Please also fill out your signature line:
How to add the required signature line 
All the best,
regards, k
PS The MP won't be able to provide you with any specific bacteria names that are causing your psoriasis.
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CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 Sept 09=10 NoIRs cover-up low lux home lite exp r/t to work
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Mia Pella
Member
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Posted: Sun Mar 14th, 2010 12:39 |
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Thanks Carole for all the relevant links. I have read many of the links today and I will keep reading until I feel confident I understand as much as a lay person can understand, before I decide that this is the treatment for me and start the search for a GP. Thanks again, Mia 
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psoriasis hypothoroid joint pain, MP(March08)
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Mia Pella
Member
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Posted: Mon Mar 15th, 2010 00:33 |
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Thanks for your response & info K.
Going to a Dr that put me on a treatment that contradicted everything I knew & was told about psoriasis for over 20years was confusing and at times distressing. At first I cried because I thought “finally a cure not just another treatment to placate but a cure !” Eventually I felt unassisted & very alone. Maybe I didn’t know the right questions to ask. Basically the Marshall protocol contradicts the best evidence for treating psoriasis and my experience was unbearable, but I persevered.
Then it all went horribly wrong and he really didn’t explain what happened,
( After about 9 months my vitamin D levels almost disappeared, I can't be sure of the numbers, but he was alarmed and he put me on something like 100,000 IU’s of vitamin D ). I should have gone back to him and asked more questions and got a clearer understanding as to what happened and why my conditions got so bad. Why after 9 months of avoiding sun ( in Adelaide this is nigh impossible ! ) and avoiding vitamin D, he prescribed huge amounts of vitamin D ???
I'm doing lots of reading about the Marshall Protocol again, and enjoying understanding more. The individual stories are inspirational, however, it's all very biased towards people with positive results. What about people who have bad experiences like I did ? Did they retry ? Am I now meant to find another Dr and risk another tortuous 9 months only for them to back pedal out of the treatment ? I’m not ungrateful for your responses, so please don’t take these comments personally, I’m exploring whether I need to go back on the protocol.
After an email from a member it turns out maybe my psoriasis is something else, maybe I have undiagnosed Sarcoidosis of the skin, apparently quite rare, but you’d think one of the skin specialist I’ve seen over the years would have suggested a skin biopsy ? You really do have to be your own physician. So I suppose my next step is to go back to my skin specialist and get a skin biopsy.  Cheers, Mia Pella
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psoriasis hypothoroid joint pain, MP(March08)
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Marysue
Moderator
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Posted: Mon Mar 15th, 2010 05:46 |
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Mia,
I am confident that with all your reading you will be able to gain an improved understanding of the MP science and how it can help return you to a state of health.
However, rather than make any assumptions, here are a few key points you will need to get clear about in order to understand your condition, why you had problems, and how you can succeed on the MP if you choose to go back on it:
--"the best evidence for treating psoriasis" or most any other diagnosis by mainstream medicine is accomplished by treatments that suppress the immune system. This includes the use of antibiotics at the higher doses typically prescribed. The MP science and treatment is based on restoring your immune system so that you can return to a state of health rather than just feel better.
--your symptoms are indicative of TH1 illness and a challenged immune system that has been unable to kill the L-form bacteria involved in causing your symptoms. You might not be able to get a correct diagnosis and even if you do, it is not likely to change the underlying cause or treatment choices.
--the reason for lowering your vitamin D levels is to reactivate your innate immune system so that it can function again and begin the process of killing off the bacteria that has accumulated. As long as your D-levels are high, or if you allow someone to convince you to take high amounts of D, you will have problems. If you can focus some of your reading on understanding the role of vitamin D in chronic health issues (including your skin symptoms), you will have a greater chance of success on the MP.
--generally speaking, people who have problems on the MP, do so because they either try to move to fast (increase abx when they are already having strong IP), or once they get intolerable IPs, don't take action quick enough to reduce the IP. Remember, the goal is not progressing on any set schedule, but to manage the progress at a pace that is tolerable to you--even if that means taking Benicar only with no abx for extended periods, if necessary.
If you haven't already read it, the following page discusses the pathogenesis of disease based on the MP science. Understanding the connection between your symptoms and this disease process is one of the keys to success on the MP.
http://mpkb.org/doku.php/home:patients:pathogenesis_overview
Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
| Posts: | 334 |
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Posted: Wed Mar 17th, 2010 03:55 |
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Mia Pella wrote: Thanks Carole for all the relevant links. I have read many of the links today and I will keep reading until I feel confident I understand as much as a lay person can understand, before I decide that this is the treatment for me and start the search for a GP. Thanks again, Mia
You are wise to take this intelligent approach
Mia, to even think about whether MP is relevant to you, you will need to do both 'vitamin' D tests
Meanwhile if your doctor is recommending a topical treatment for psoriasis, it is just possible that may not conflict with future MP treatment, if that is your considered choice.
Remember this is a research program, and everyone who contributes is sick themselves in various ways, so will know quite a lot about their own individual reaction and perhaps want to apply it to others, but
you must listen to your own body and learn to trust your judgement,
while becoming familiar with the ideas and reasoning process of other people also.
No easy ask, to be sure
what seems to be a cure for one person, could turn out to be a 'red herring' for another.
Even before you get D1,25-OH readings, you will be able to fill out a signature line
as directed by the post above from 'k'
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Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
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eClaire
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| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
| Posts: | 375 |
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Posted: Sat Mar 20th, 2010 06:38 |
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Hey,
This is an interview that Amy did with Gus: http://bacteriality.com/2007/08/10/interview1/
He had sarcoidosis and a severe case of psoriasis and has recovered.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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RM
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| Joined: | Thu Jul 9th, 2009 |
| Location: | United Kingdom |
| Posts: | 80 |
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Posted: Sat Mar 20th, 2010 07:23 |
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Hi Mia,
I started in july`09, i have had some very rough reactions which have proved to be ip, i even considered stopping at some stages(glad i didnt). I have learnt to manage things a bit better and hopefully with continue to better control my reactions.
I learned that i had to take matters into my own hands and constantly read/research my disease. I also have a skin disorder which i now know is sarcoid related (both shins and about 4 areas on my back).This was so bad it kept me from sleeping in the past. Now it still flares but no where near as bad and i just use a water based moistursing cream. Also after a really bad reaction i had to sit back and take stock of where i was and realised that my ibs was greatly reduced, i hadnt taken the 2 meds for it in 2 months, bladder irritation (going to the bathroom 4~5 times every nite) had gone. I was sleeping sound again (at least 6 hrs/nite) as before it was 1~2 hrs. Pain etc had reduced(stabbing pains just about gone).
I found that this treatment can feel as difficult as the disease at times, it is not an easy option, but it seems to turn a corner (burn some infection out) after a bad bout/reaction. I was in a really bad way with my last relapse(hadnt worked for 6mths-was house bound-but am now working 5 days again) and std medicine was offering me nothing, i dont know where i would be now if i hadnt found this.
Hope this helps
R
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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Mia Pella
Member
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Posted: Sun Mar 28th, 2010 13:05 |
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Thanks RM for sharing your story. Mia
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psoriasis hypothoroid joint pain, MP(March08)
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