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nightowl
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Posted: Fri Jun 27th, 2008 05:45 |
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Hi, I have been researching treatments for Crohn's, as I have had it for 16 years, had 4 operations and different 'conventional treatments'. I have been looking into the MP, but taking some of the antibiotics (mino especially) and Benicar worry me as 'side-effects' in patient info sheets include diarrhoea etc. If I do the MP, how do I control it as IP? I don't want to be on the loo for days on end and getting dehydrated. I have to be careful with taking Imodium and antispasmotics like Buscopan as I am prone to getting narrowing of the ileum (I have had 2 strictures which I have had surgery for) and getting blockages. This also goes for opiod painkillers which slow the bowel down (I would probably need those for the pain of the IP too.)
I think the pathogenesis theory behind the MP is great and explains a lot, but the IP I would have to go through seems hard. I read Dr Blaney's interview on Bacteriality.com (great site too, btw), and he says IBD IP is hard to control. I would like to know about how this is controlled - thinking about doing the MP scares me concerning the IP. I am in remission atm after having had my 4th surgery in Feb but don't want to have any more surgery if I can avoid it in future. I was on Humira for 5 months just before the surgery, it did suppress the inflammation sufficiently to do the op to get rid of the stricture, but I didn't want to stay on it longer than I had to as I know there is a risk of infection (eg. TB etc) the longer you are on it. I am currently just on Azathioprine (25mg/day).
Thanks,
nightowl
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Crohn's disease for 16 years, eczema. Currently on Azathioprine 25mg/day. Starting vit D avoidance.
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Julia
Advocate (on leave)
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Posted: Sat Jun 28th, 2008 00:23 |
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Hi Nightowl, and welcome!
Many of our members have IBS/Crohn's symptoms, no matter what their primary diagnosis, and they are coping well on the MP. Some have had relief from symptoms very soon after starting the MP; for others it has taken longer. Much seems to depend on high severely you have it on starting. See Crohn's Disease.
Drug trials are done on healthy volunteers, but some (perhaps many) apparently healthy people are harbouring incipient 'autoimmune' disease. What the patient leaflets record as side effects may well be immunopathological reactions (herx).
Your immunopathology on the MP can be controlled to some extent by adjusting the medications. It's essential to be very familiar with the Phase 1 guidelines.
Here are links to the stories of some of our members with IBS/Crohn's:
Jeanne: Crohn's: no meds required 8 months. Energy etc..
1 year - List of improvements
Peter de Jager: severe CFS and chemical sensitivities (IBS and depression too). doing very well
RichardM: CFS, IBS, weight loss/thyroid/liver/digestion issues
Zars: CFS RSD/CRPS IBS: Crikey! What a massive change since May/June
shadowzone: CFS, LGS/Malabsorption/IBS, Rickettsia: about improvement in my lower back.
Carole: PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac Migraines Osteoporosis 2/04 Mediastinoscopy ~Sarc Story - Progress Continues!
Sam MCS CFS IBS mini abx vacation was a very encouraging experience
IngeD in modified phase 2
Rickettsiosis, neuropathy, HTN, pre-diabetes, IBS, leaky bowel, fatty liver
It's good to see you've been reading up about the MP. The bad news is, I know of no doctors in the UK prescribing the MP who would be knowledgeable enough to supervise you. That's why it's so important to educate yourself as much as possible, so that you can educate your doctors. Most of us have had more success with GPs than with specialists.
A few of us here (including me) are getting the MP from open-minded GPs. A few are under the care of one private doctor who knows the MP fairly well but nevertheless likes to add other things to it, and the phone consultations are expensive. You would still need a local doctor to monitor you and do the blood tests.
As the MP trial is now closed to new members except by invitation, you may have to change doctor to see if you can get one who's prepared to join the MP professionals' forum ("Health Professionals are welcome, and will be manually joined into the database after sending an email to Moderators@MarshallProtocol.com listing their desired username and password."). See Suggestions To Get Your Doctor On Board With the MP.
The main thing that most doctors balk at is the unlicensed dosage of Olmesartan (Benicar/Olmetec). You should take along a printout of the US package leaflet which is much more comprehensive and useful than the one we get here. It makes it clear that olmesartan is safe to take at the MP doses, and doesn't reduce blood pressure any further at the higher dose.
I'm sorry I haven't better news for you. Nearly all the UK members on the MP (there are only about 15 of us) have had an uphill battle to get it prescribed. But it's worth it to get your life back.
The D tests can be ordered by any doctor, and the 25-D is quite routine. The 1,25-D is a tricky and expensive test for which the blood sample needs to be frozen and sent to Manchester assay centre. There may be other centres that I don't know about.
UK info on NoIRs
"What is the Marshall Protocol?"
Simple Explanations
D-metabolites tests
Success Stories
You are very welcome to ask further questions here at your own personal thread 
Julia 
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nightowl
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Posted: Sat Jun 28th, 2008 04:26 |
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Thanks Julia, definitely food for thought . I told my specialist I was looking into the MP and gave him a folder with some info and he told me at the last appt that he hadn't heard of the protocol. He was not worried about the Benicar but he was worried about avoiding vitamin D & the effects it would have on my bones. I don't see him again til mid Aug but have printed out info about lack of calcium & high 1,25D being the cause of osteopenia, not from lack of vit D. I think he is sceptical but there is little else he has to offer me and so I think he will let me do it, he said he is happy for me to do the D-metabolites test at the next visit.
I haven't brought it up with my GP yet as I want to see what the specialist says first, and I have agreed with my family to wait until Sept before starting the protocol as it will be easier to avoid the sun as the days get shorter, and my mum will move in with me then to support me.
Cheers,
nightowl
____________________
Crohn's disease for 16 years, eczema. Currently on Azathioprine 25mg/day. Starting vit D avoidance.
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nightowl
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Posted: Tue Aug 19th, 2008 22:39 |
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Hi Julia,
I talked to my specialist last week and I got a letter from him yesterday saying that I can do the MP! Yay! I am now going to get my ducks all in a row (I love that phrase, I picked it up from this site!), have emailed a request for an application form. I will see my GP to get my D-metabolites tested and to talk about it a bit more and give her info about it. My specialist is writing to her as well. He is sceptical and said he doesn't think it will work but he is letting me try it.
I'm looking into the NoIRs, I looked at the UK website mentioned but they don't have trendy styles, I'm only 31 and want to look good lol. So I think I'll order the ones on the American website even tho I will have to pay for shipping and wait a bit longer. I won't start the protocol until October as I see my specialist then again and my parents are coming down to stay with me for a bit before I go back with them to stay at theirs. They have a granny flat that I can use which my granny recently left for a home. They can keep an eye on me but my cave can be mine lol and they don't have to live in it!  (There should be a bat emoticon for on here lol.)
Will also get a low-carb cookbook and get some ideas for stuff to eat, I have seen the 'Foods to Avoid' topic and have printed that out and Knochen's site as well. I have been lurking ('researching' lol) since February when I was facing surgery for the stricture and I am finally getting to do it  .
Cheers, nightowl
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Crohn's disease for 16 years, eczema. Currently on Azathioprine 25mg/day. Starting vit D avoidance.
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Julia
Advocate (on leave)
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Posted: Wed Aug 20th, 2008 12:48 |
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Nightowl,
Wow, congratulations on persuading your specialist! That's great news
Before you begin
Phase 1 guidelines - it's a good idea to print these out and refer to them often, and give doc a copy too.
A granny flat where you can be part of the family but have your own retreat sounds ideal. But make sure you don't get too much daylight when you're in the main house!
Julia 
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nightowl
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Posted: Mon Sep 15th, 2008 18:54 |
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Hi Julia,
I went to see the GP last week, having already given her the Phase 1 guidelines and Physician's Guide and letter of introduction from this website. She was sceptical and said they couldn't do the blood tests as requested, I would have to have it done at the hospital, and that she couldn't prescribe me the Benicar as it wasn't mentioned in the letter from the consultant, only the antibiotics. She was also worried about the 'warnings' in the guidelines ie. heart herxes etc. I explained that it's unlikely to happen to me as I don't have heart involvement and I'm young. She said I should really be doing this in hospital. Arrrgh! So I will have to wait until 1st Oct when I have my next appt with the consultant and ask him those things *sigh*. Then it's back to the GP to ask for the scripts again. I guess I knew it wouldn't be easy.
I've requested a quote for getting the NoIRs from the US site and ordered a glamorous hat from http://www.hatsandthat.com (the Brenda style). So hopefully I will get there in the end!
Cheers,
nightowl
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Crohn's disease for 16 years, eczema. Currently on Azathioprine 25mg/day. Starting vit D avoidance.
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Julia
Advocate (on leave)
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Posted: Mon Sep 15th, 2008 21:59 |
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Sadly, your story is all too common. Let's hope for an open-minded consultant 
Here are the links to the info on Benicar:
FDA safety insert - more comprehensive than ours, & makes it clear it doesn't cause dangerously low BP at the high doses we use.
Benicar-Basic Information
Benicar Applications Beyond Hypertension
The need for a Benicar blockade
Why shouldn't we ramp up the dose of Benicar?
It would be worth selecting some of this to print out and have ready.
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nightowl
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Posted: Wed Oct 15th, 2008 17:41 |
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Hi Julia,
Went to see the consultant and he wants me to go into hospital soon to start the MP so they can keep an eye on me until they and I know what it will be like being on the protocol. My parents said they would be happier if they knew I was in hospital so I reluctantly agreed. My hat arrived, it looks quite good, but my NoIRs haven't arrived yet from the US. I sent an email to the NoIR supplier and they said they would look into it.
I did a mini-probe with reducing a little vit D in my diet to see what effect it would have and also to make it easier when it comes to starting the protocol. I had a sore TMJ on the right side and it clicked a lot. So that is interesting. I reintroduced some vit D in my diet for now until I get the NoIRs and know when I will go into hospital. If it is too hard choosing the right food from the hospital diet, my mum will bring in food.
I am now actively looking to reduce the carbs in my diet, it is taking a bit of lateral thinking and looking at the food tips on this site. I see Oatibix may be OK and am looking into getting a breadmaker, I was comparing carbs in shop-bought wholemeal and white bread and there is very little difference between those but there is added sugar in wholemeal (probably to make it taste nicer) and other things. I can't have high fibre eg. wholegrain as it literally runs through in a couple of hours, so it is not easy to look for low carb low fibre things. I usually have white rice and white bread - high in carbs! I also can't have nuts for the same reason, argh I am gonna lose weight! Cheese should be fine though.
Sorry for the little moan, I know it is just getting used to the adjustment and finding suitable things and then it should get a little easier.
Cheers,
nightowl
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Crohn's disease for 16 years, eczema. Currently on Azathioprine 25mg/day. Starting vit D avoidance.
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Julia
Advocate (on leave)
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Posted: Wed Oct 15th, 2008 19:10 |
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I'm amazed at the NHS actually giving enough credence to an unrecognised treatment that they'll take you into hospital to try it out 
Your problem is, of course, that the hospital food is an unknown, and hospitals usually have far too much natural light in the wards. I hope they won't want you to be in too long. Maybe you could close the screening curtain on the window side of your bed.
Our milk isn't fortified with vit D, but all our marg is by law. Just think how many hospital canteen foods could have marg lurking in them.
The other problem is that the doctors probably won't understand the inevitability of immunopathology. When you get IP they'll want you to stop, or at least they'll want you to reduce Olmetec (Benicar) instead of increasing it as you should.
Also my guess is they may want to start you on a lower dose of Olmetec, and ramp it up, not realising that is counterproductive; see Why shouldn't we ramp up the dose of Benicar?
Oh well, better the MP supervised by a sceptic than no MP!  Have you a laptop so that you could still have access to all the MP info?
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nightowl
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Posted: Mon Oct 27th, 2008 01:58 |
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Hi Julia,
I got a letter from the hospital saying to go in on the 10th November and to start vit D avoidance 2 weeks before that (starting tomorrow). So that is good. Not so good is the fact my NoIRs still haven't arrived yet! I will make do with normal sunglasses or ski goggles and just stay in during daylight hours and black out the windows and change the bulbs to 40w ones.
I am actually at my parents' in the W of Scotland, having travelled up today (Sun) and am staying until 8th Nov, as my auntie and her partner are coming to visit from England so it'll be nice to see them. I am staying in just 2 blacked out rooms upstairs while the visitors have the granny flat and then after they go I will move in there. Then my mum and I will have to drive back to Edinburgh where my hospital is. I sure do hope the NoIRs have arrived by then, or it'll be difficult coping on the Benicar.
In hospital I will use my dad's laptop with modem USB. Hopefully I will get put in a side ward on my own so I can use black poly bags or tin foil on the windows. I told my consultant I would need to black out the windows, so I hope they heed that. Yeah, diet is going to be hard, I will try to choose the plain stuff and my mum can bring in other stuff to make up the difference.
l know I have to be on the Benicar for 2 weeks before I come off the Azathioprine, how do I wean off it? The tablet I take each day atm is tiny, just 25mg. Normally when I stop Aza, I don't have to wean off it, I just stop taking it and nothing happens, unlike with steriods. I don't think my consultant is a member of this site yet. I got an email from the MP site admins saying that I can't join the study cohort after all so I won't be getting the medical support online after all. They did say that I have to wean off Aza before starting the antibiotics though.
Cheers,
nightowl
____________________
Crohn's disease for 16 years, eczema. Currently on Azathioprine 25mg/day. Starting vit D avoidance.
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Julia
Advocate (on leave)
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Posted: Mon Oct 27th, 2008 14:27 |
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l know I have to be on the Benicar for 2 weeks before I come off the Azathioprine, how do I wean off it?
The topic Medications to avoid says Azathioprine (Imuran) can be stopped without weaning, but I'll check with a medical moderator.
I got an email from the MP site admins saying that I can't join the study cohort after all so I won't be getting the medical support online after all.
The study is now closed, but when you start you can join our new forum on this site, Non-medical support for those on MP. We don't give medical advice, but we can guide you to the information you need in the MP library, or to where another member in a similar situation has been advised by a medical moderator. You certainly won't be alone!
Please make sure you know the following essential information thoroughly:
Phase1 guidelines - print one out for you and one for your doctor, and refer to it often.
FAQs Easy Finder & the ABC of MP - use with the search facilities to find information. How to do a site search
Essential Information About the MP - take this a little at a time!
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nightowl
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Posted: Wed Oct 29th, 2008 03:22 |
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Thanks Julia. I have another quick question, is normal Soltan OK to use as protection for the skin when I go out? Is there a specific SPF or chemical that I need to make sure is included? I have been following the zinc oxide/ketoconazole cream etc discussion, I think using Soltan will be easiest for me.
Cheers,
nightowl
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Crohn's disease for 16 years, eczema. Currently on Azathioprine 25mg/day. Starting vit D avoidance.
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natalie17
Advocate
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Posted: Wed Oct 29th, 2008 05:37 |
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Hi Nightowl,
I had a quick search and found that Julia recently said;
I got a zinc sunscreen called Soleo from the internet, because I wanted it to be reasonably all-natural. But it's rather greasy, and makes my face hot, which for me means itchy, as I have eczema. Some of Boots Soltan range used to be zinc oxide rather than chemical - don't know if they still are - you need to read the labels carefully, as the ingredients vary within their own ranges. Some of the other UK members might have better suggestions.
Also see Sunscreen Overview
(if you haven't already).
Take care,
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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nightowl
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Posted: Thu Oct 30th, 2008 00:59 |
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Thanks Natalie, that's exactly what I was asking for .
Cheers,
nightowl
____________________
Crohn's disease for 16 years, eczema. Currently on Azathioprine 25mg/day. Starting vit D avoidance.
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nightowl
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Posted: Sun Nov 16th, 2008 01:50 |
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I went home to my parents' and did the Vit D avoidance thing for 2 weeks and then came back to Edinburgh to attend hospital to start the MP. Unfortunately the outcome is that the hospital committee refused to let me have the Benicar at the MP doses, they say it is 'dangerous' and that it isn't used much in this country. I am gutted and don't know what to do next. I did explain that the BP doesn't lower by very much and that the increased dose makes no difference beyond the normal dose as per BP levels, but that it protects the body, etc, etc. to no avail. They had the Benicar info from the MP site but no go.
My GP isn't going to prescribe me the Benicar without the hospital's say-so, so I can't go that route. I thought of going private but I am on benefits and cannot afford to pay the fees, and it's unlikely I will find one that will prescribe me the Benicar. I think I might be able to stick to the diet for a bit as it has helped but I think I've come to the end of the road where the meds are concerned. So it's back to the same old, same old which I'm not at all happy about, at the current rate I am having operations every 2 or 3 years.
I am very upset about this and am angry that the hospital has not given me this chance, I am sick and tired of this disease, they have NO idea what it is like to live with a chronic disease and go through various treatments only to end up with operations anyway. How many more must I endure before the MP is considered a viable alternative? 10, 20 years? Sorry, I needed to rant, I am so disappointed.
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Crohn's disease for 16 years, eczema. Currently on Azathioprine 25mg/day. Starting vit D avoidance.
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Dr Trevor Marshall
Research Team
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Posted: Sun Nov 16th, 2008 01:59 |
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You need to print out the transcripts of the conference presentations at Porto, and take them in to the Hospital and ask them when this treatment is going to be made available to you.
This might not work, but the fact that the protocol has been published is really all the hospital is interested in. Nothing else.
http://www.marshallprotocol.com/forum39/12376.html
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nightowl
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Posted: Mon Nov 17th, 2008 01:25 |
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Thanks, Dr Marshall . I'll print them off, hope for the best and see what happens.
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Crohn's disease for 16 years, eczema. Currently on Azathioprine 25mg/day. Starting vit D avoidance.
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