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appledrummer
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| Joined: | Sat Jan 12th, 2008 |
| Location: | United Kingdom |
| Posts: | 17 |
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Posted: Sat Jan 12th, 2008 15:50 |
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I noticed from those people who list their location that a couple of you are in the UK. Wondered how people have found the reaction from their docs.
I live in Hertfordshire, UK and feel blessed that I saw a rheumatologist who listened carefully to my husband and I. He didn't react with disdain (usual response of specialist to mention of patient's personal research, in my experience) when I asked his opinion of Dr Marshall's research. He said honestly that he didn't know about it. May have helped that he misheard me! I said I was a health journalist (i.e. used to write about NHS and govt policy) and I knew pop research and good research when I saw it. He thought I said I was a medical journalist, but I actually have no medical or scientific traininig.
(Hope this posting is making sense - I am brainfogged, light sensitive so screen is painful, and I have just lost the posting I just wrote and previewed !!!)
My husband and I are getting more concerned about my condition and the fact that the rheumatology dept can only offer appts every two months - so no test results, incl chest xray, until mid Feb. I currently have chronic fatigue, symptoms of Fibromyalgia, light sensitivity (following Trimethoprim), muscle pains, pains in diaphragm and back of ribs, malar rash (now using sunblock which has resulted in my muscles 'freezing' in cheeks and jaw, and also I have lost 4.5k in weight since Oct.
Presented my case and the research to really lovely young male general practitioner in my practice (by the light of his computer, having switched off overhead lights!). He promised to consider Dr Marshall's research and the anti-fungal skin cream carefully. That was a week ago.
If they are worried that the MP is too specialist or new for them to oversee then I am not sure what I will do. Already moved from the main GP practice in town because they were unhelpful and rude. what have others' experiences been in the UK?
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Julia
Advocate (on leave)
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Posted: Sat Jan 12th, 2008 19:54 |
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Hi Appledrummer,
Congratulations on finding a specialist who remained civil when you told him you'd 'found something on the internet!' Most specialists seem to think they know it all, and there couldn't be anything new in their field that they hadn't heard about.
But all you need is one open-minded GP to prescribe the MP. Mine was unwilling at first to try the high dose of Olmetec (Benicar), and just gave me minocycline - probably just to keep me happy, as it's pretty harmless.
But when he saw the dramatic improvement in my symptoms in just a couple of months of pulsed, low dose minocycline (it doesn't work quite as instantly for everyone), he realised Dr Marshall was on to something. He decided to risk the Olmetec, and told me to take my directions from the MP team and he would just monitor me.
Meanwhile my nice-but-conservative endocrinologist (the nearest thing we have to a sarcoidosis expert here in Northern Ireland) sees me every six months for blood tests, and says he remains sceptical, but is curious enough to want to know what happens next. And I keep getting better!
If it's any help to you, my GP will take phone calls from other docs to reassure them that I'm doing well on the MP and there are no problems with the Olmetec dosage. He took on a new CFS/ME patient for the MP recently, so I think he must be satisfied with its safety. If you think it would help to give his number to your doc, I'll send it by PM or email.
Some members have offered to sign a waiver to say they won't sue the doc if anything goes wrong. It may give doc more confidence to prescribe something his insurance won't cover.
Have you read these: Suggestions To Get Your Doctor On Board With the MP and Letter of introduction for your MP supportive doctor?
If your doctor decides not to support you, you can post a request for the UK list of doctors who might be prepared to do it, but it's very short as yet! It would be better to try another doctor in the same practice, or even move practice again  .
It's difficult to get the vitamin D tests done here - if you ask for a vit D test they only do 25-D. There are some hospitals and labs that do the 1,25-D (for which the sample must be frozen for transport), but many doctors don't even know this.
I started the MP without ever having the D tests done. Much later my nice-but-sceptical endocrinologist decided to test my 25-D because he was worried about all the light reduction and D avoidance causing osteoporosis (it didn't), but when I asked if he wanted to test 1,25-D as well, he looked at me blankly!
If your eyes are sore at the computer, have you tried turning down the brightness of your monitor? Also, wearing ordinary sunglasses, preferably Polaroids, can be a help. Order the required MP sunglasses (NoIR, Bolle100, Oakley or Zeiss) as soon as possible because they may take a few weeks to arrive. Ordering information is in Protecting Your Eyes. You'll find them a relief to wear.
While you wait to start the MP, you could be cutting out dietary vit D and reducing sunlight (not too hard at this time of the year  ).
See Should I avoid sun exposure and vitamin D while I'm waiting to start the MP?
Foods to Avoid
UK Foods List NB, all marg here has D added by law, but our fresh milk is okay.
Other useful links:
Before You Begin the Marshall Protocol
"What is the Marshall Protocol?"
Simple Explanations
Essential Information About the Marshall Protocol
Marshall Protocol FAQs
Phase One Guideline
Papers for Physicians
Please ask any further questions here at your own personal thread. You've come to the right place 
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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appledrummer
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| Joined: | Sat Jan 12th, 2008 |
| Location: | United Kingdom |
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Posted: Sat Jan 12th, 2008 21:25 |
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Thank you,
I thought I would have difficulty getting the D testing. My friend is having to go private just to get the full range of tests for her thyroid condition.
I will send you a private message, prob tonight, because my GP has an email address and talking with your GP might help, thank you.
As for now, I am already sitting in low light, screen brightness down, sunglasses on, cap brim down. I have had the blinds and curtains drawn in the house permanently since before Christmas when I got light sensitive and read the stuff on the MP site in more detail. I also cut out the milk powder, margarine and the multi-seeded bread I was eating a lot of. I am trying to avoid the other items on the list as well.
thanks again - we will await a call from the surgery!
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appledrummer
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Posted: Thu Jan 24th, 2008 15:37 |
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My general practioner today said he and his colleagues were not confident to oversee the MP for me. They were worried about a cardiac effect. But the good news is - my rheumatology consultant (diff doc to last time) wants to see me now on Mon, rather than in Feb. Looks like I'm going to have to sell it to the specialist! And I will be on my own ( my husband went with me last time).
I was wondering whether I might be able to start with minocycline on its own. The reason is - I have been light sensitive since before Christmas, not so bad now. I am in the house, most curtains drawn, 40% NoIRs (2% for going out roughly every other day). Following the MP diet.
I was concerned that the urine infection that caused acute pain before Christmas was coming back, with pains creeping round my lower abdomen and around the ribs as before. All last week I waited to hear from the GP about the MP (He didn't ask Julia's doc) - meanwhile I started to sneez incredible sneezes that nearly blew my head off. Over the last weekend I decided I had to cut out coffee completely - boy, have I felt bad each morning!
On Sun I started to feel less pain when passing water and no torso pain, only weakness in torso and legs. I got horrendous flu symptoms, exhaustion. Next day the doc surgery were short staffed So chose thurs apptmt. I then had chest pain, breathlessness, severe sore throat, anxiety and tearfulness Tues, full cold, fatigue, running nose, extreme restless limbs last night with shoulder muscle spasms, sleepness night, racing mind, feeling awful today. Is this Immuno path?
If the doc says I have the same water infection again and need cephalexin (not the ABx that caused light sens) should I take it? I feel like I may have cleared the major infection now (just got to wait for result).
Would welcome advice at this stage before I see rheumatologist. Thanks
Appledrummer
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Julia
Advocate (on leave)
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Posted: Thu Jan 24th, 2008 23:00 |
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Apple,
They were worried about a cardiac effect
Please see When should I be concerned about cardiac symptoms?
Is pulsed minocycline alone effective? I had to start with mino alone, as my doctor was too wary of Olmetec. I had dramatic improvement for two months - but not everyone has - and then it stopped working. But by this time my doc was convinced enough to try the Olmetec, and with it in place, I started at the lowest dose of mino again, and began herxing again.
Yes, you can get immunopathology (herx) just from avoiding vit D and sunlight. See Should I avoid sun exposure and vitamin D while I'm waiting to start the MP?
It's possible that the urine infection may clear on the MP. If you decide to try the cephalexin again, you must wait at least four days between finishing it and starting Olmetec.
I do hope you can sell the MP to your rheumy. But specialists are often rather entrenched . Good luck!
Julia
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Always consult a physician
Essential Info; FAQ; Julia's story
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GeorgeinRollaMO
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| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
| Posts: | 331 |
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Posted: Fri Jan 25th, 2008 00:07 |
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Hi, Appledrummer,
Good luck on converting your doc to being at least "open minded" enough to try something that is showing promising results. He doesn't need to be a disciple yet.... just "open minded" enough to assist you with doing the written Guidelines.
I noticed that you said, "My friend is having to go private just to get the full range of tests for her thyroid condition.". That statement about her thyroid condition rang a bell for me.
Prior to doing the MP, my bodily temperature was in the 97.X and even 96.X range. If you will do a Google Search for "Wilson Temperature Syndrome", you will see that that low body temperature is a sign of a thyroid condition. My PCP wanted to put me on Armour Thyroid. I declined. But all of that suggests to me that I did have a thyoid condition, which seems to have cleared now with doing the MP protocol.
After doing the MP protocol for some length of time, my bodily temperature is now 98.X, except when I have a good immunopathology (herxing), then it might be about 99.2.
The 125D hormone that is mentioned so much on the MP 'study' site is THE controlling hormone for ALL other hormones. My 125D hormone was elevated at 57 pg/ml saying that I did have a Th1 inflammation.
You might mention this to your friend for her exploration. The two of you might be doing the MP protocol together.
A Th1 inflammation may present with many diverse symptoms, or sets of symptoms, that all have the ONE cause... pleomorphic bacterial L-forms.
Wishing you, and all, wellness!!!
Dark Vader...aka, George
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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Dr Trevor Marshall
Research Team
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Posted: Fri Jan 25th, 2008 00:41 |
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The 25-hydroxyvitamin-D test is common and inexpensive, and is key to us planning your therapy. The 1,25-dihydroxyvitamin-D test is expensive and rare. We use it because if it is elevated, it is proof positive of a Th1 condition. However, the value has to be considered along with the 25-D value, as it is not always high. And the 1,25-D test is not essential to the therapeutic planning.
SO, you could ask Doc for a 25-hydroxyvitamin-D test. In the USA these are covered by insurance if you have a tendency to bone loss (osteopenia or osteoporosis).
..trevor..
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appledrummer
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Posted: Fri Jan 25th, 2008 15:56 |
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Thank you George
I have already realised some connections in other conditions like thyroid.....I don't want to talk about my friend's condition without permission. Also she thinks very differently to me......I have told her about the MP site and I believe she has looked. I will continue to respect the fact that she is not me, and pray she doesn't get any more ill. I need to concentrate on getting well myself.
All the best
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appledrummer
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Posted: Mon Jan 28th, 2008 20:13 |
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Well, I saw my rheumatology consultant and guess what.....I could see the doors slamming shut as soon as I started speaking.
Not only did she simply respond 'all your tests and chest xray were completely normal,' (no print out supplied), she then refused to use the Thomas' Criteria for lupus ('we don't use that here'), diagnosed fibromyalgia alone, refused to even pick up the MP paperwork I gave her. She would not consider the treatment and added as final condemnation for the future (not accepted, I should add) 'You will never ever find a rheumatologist in this country to prescribe these drugs.' I told her plainly that she was not offering me any alternative to being ill. I didn't want the physiotherapy or opiate-based painkiller she offered.
My husband and I are just taking a pause for now and looking for the next step. My chest and diaphragm pain with breathlessness has worsened through Sat night and Sunday. I have eased up on the MP diet and blocking the light at home (I am not quite so photosensitive). I am just going to be sensible about having a mild natural D intake, so that I don't provoke this recently alarming IP without having access to any Olmesartan and mino.
At least I suppose the rheumy did get me a 'generic D test' (I think that's what she said because she got confused at what was written down and kept saying the 1,25 D, instead of the 25D.) She has also done a bone calcium and something else test. She will recommend to my GP that I be referred to a chest/lung doc.
Thankfully I am ending this day with hope, and I will wait to see what tomorrow brings.
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Julia
Advocate (on leave)
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Posted: Mon Jan 28th, 2008 22:08 |
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Apple,
Well done for remaining so upbeat after the kind of interview nearly all of us have had to endure at some stage  . To be fair to the woman, she was probably right about one thing - you will never find a UK rheumy to prescribe the MP! Let's hope you fare better with the pulmonologist, but I think in the end you might have to consider looking for yet another GP, unless you can allay your current practice's fears by giving them When should I be concerned about cardiac symptoms?
I think your plan to follow the MP lifestyle less rigorously sounds good for the moment. Let's hope the moment doesn't have to last too long.
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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appledrummer
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Posted: Tue Feb 12th, 2008 11:45 |
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Hi everyone
I'm very pleased to have had an appointment today with another GP in my practice - she is an acquaintance of mine already, so it was easy going. She is South African so she is easy going generally! The slightly bad news is that she is on maternity leave in 6 weeks time. She believes I should keep with one doctor rather than going off to see more specialists because she thought it will get confusing trying to explain to each doc (even my last lab test results had not been supplied to me or to my GP!). I agree - I am getting v confused lately - I even stopped by at the local hospital phlebotomy dept and then remembered that she had asked me to do the glucose test involving 12 hr fasting! Never mind.
She accepts (with a half smile) Dr Marshall's prediction that the medical establishment will accept MP as normal treatment in 20 years time. For the first time she has noticed that my blood pressure was quite high today (my dad's is always), tho I think my BP varies noticeably. She is concerned about my chest/diaphragm pain and the warnings about cardiac symptoms on MP. She has arranged an ECG and she is going to chase up my rheumatologist who has not communicated anything since I saw her last month.
I think I am happy to tick along at the moment with the docs looking more closely at my chest/heart and finding out what they can about what's going on in there. I will still maintain I want nothing but the MP. Then I may get the support I need if my immuno-path is bad. If I don't get to do it until the autumn then I think I can live with that - this GP will be around again when baby arrives, she may well oversee it for me.
I'm also v pleased that my mum has now read some of the MP site and is a lot more sympathetic. The very best to you all ..
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appledrummer
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Posted: Thu Jun 19th, 2008 11:49 |
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Hi again
Here's a short summary of where I'm at now - second opinion from Addenbrookes' rheumatologist went v badly and he forcefully told my husband and I that nobody is allowed to do anything different from 'best practice' in the NHS any more. I will go see my GP again soon I think.
I have experienced significant IP since cutting D and light in December. My photosensitivity is not quite as bad as I thought in the bright summer sun, but I do get days when I go out for a while and it is v painful on the eyes. I seem to fallen back in to the state I was in last year with muscle fatigue, blotchy torso, some sleeplessness, rhinitis and sinusitis, plus rib pain as my most constant pain. But in the past few weeks I have had significant and constant abdominal pain. I have been taking Actimel probiotic since Jan because I wondered if it would help me cope with my IBS while getting myself well. Then, just as I was telling my husband I was getting a bit worried by the new pain, I saw that Amy had just posted the new speculative article about probiotics. when I told my hubby about the death rate in the Dutch study we looked at each other stunned - "you're going to stop the probiotic are you!?" he said quickly. They are now in the bin.
But I have also started taking a calcium supplement. One a day 100mg - the only one I could find without Vit D was chelated and with added phyto-antioxidants and prebiotics.
I am also very interested in allacin. I have bought some Allacin-Max but I don't want to rush to take them when I am changing the other supplements. As I don't seem to have a hope of getting the MP prescribed in the UK, I thought I would gradually take a few capsules a day and see if IP returned. I will tell my GP what I am doing and discuss the science with him again.
Any advice anyone?
Last edited on Thu Jun 19th, 2008 11:49 by appledrummer
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appledrummer
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Posted: Sun Jun 22nd, 2008 16:07 |
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Has anyone got experience of taking allacin?
Also, has anyone got any thoughts on using a chi machine which 'wobbles' your ankles while lying down and is alleged to help the lymphatic system. I have borrowed my friend's one before.
thanks
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Knochen
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Posted: Sun Jun 22nd, 2008 16:58 |
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Either of these might serve only to increase immunopathology, and would be contraindicated for that reason. Many people on the MP avoid garlic.
Trust me, you can provoke plenty of immunopathology without any extra measures. There's no need to add to it. Keep it simple; the fewer variables the better. I understand the desire to speed things up, but the die off has to proceed at a slow rate for the IPR to be tolerable.
No supplements, simple foods, no Vit D., no sunlight. Don't gild the lily. 
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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appledrummer
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Posted: Sun Jun 22nd, 2008 21:25 |
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Knochen, I have read all the details about other medication on the MP site several times and know that allacin will react with MP. But I'm asking because I cannot obtain the MP affordably in the UK! My immunopathology is slowing down after 7 months cutting D and sunlight.
Does anyone have experience of either of these treatments? Thanks
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Knochen
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Posted: Sun Jun 22nd, 2008 21:53 |
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Appledrummer,
It's unfortunate that you are unable to start the MP, and I hope you are able to find a way soon. We aren't able to entertain discussions of non-MP treatments, as the purpose of this board is to disseminate information about the MP.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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appledrummer
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Posted: Wed Oct 29th, 2008 16:53 |
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Hi
I am currently unable to get MP in the UK as I can't afford to go private. In the meantime I am herxing (but not so significantly as before) with Allacin Max currently 4 caps every 48 hours. I am also feeling much better in torso upper right quadrant after taking milk thistle for four months. Light sensitivity is improving now - but it may be because my body has run out of fight for now.
Does anyone have experience using Valium for anxiety/mental herx effects in the UK - can I get hold of it? I need to stop using regular St John Wort but it appears that my GP will not be allowed by the NHS to prescribe any branded diazepam, although he is quite willing.
Thanks
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Julia
Advocate (on leave)
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Posted: Wed Oct 29th, 2008 18:44 |
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Appledrummer,
Your doctor can choose to prescribe brand name if s/he's convinced it's better. Then you have to watch the pharmacist doesn't substitute the generic, as they're told to give you the cheapest. Ask doc to specify 'Valium only' on the scrip.
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Always consult a physician
Essential Info; FAQ; Julia's story
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