Sarcoidosis Answers for Sarcoidosis Physicians and Nurses

Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-site, or the Autoimmunity Research Foundation.

This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME?

Click here to read "REMISSION IN SARCOIDOSIS"

How a Pathologist can see Bacteria causing Sarcoidosis

"How does Doctor measure my ACE, and my D-metabolites?"

Weaning from Prednisone

Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms The SarcInfo F.A.Q.

Medical Abbreviations CBC Radio Show

Protocol Phase 1-First 3 months

** Papers for Physicians **

Antibacterial Therapy induces Remission

Implications for Autoimmune Disease
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs

Antibiotics in Sarcoidosis- The 1^st Year

Rationale for abx in Sarcoidosis

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure

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* UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 02-14-04 12:41

This is the thread to post messages specifically about United Kingdom (UK) Issues

Click here to access the archive of the first 140 messages in this topic (up to 14 Feb 2004)

Re: * UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 02-14-04 12:47

Julia and Steve have just posted "Letters to the Editor" at the British Medical

Julia's message is on the BMJ at this URL

Leave plenty of time for the messages to load, it will take 5-10 seconds before they pop up)

Steve's message is at this point on the BMJ discussion

Bravo, folks. Excellent messages. Seen by the people that matter. You have started to take charge of your lives again, lets keep the pressure up to make sure you start to get answers. Let me know if anybody responds to those BMJ posts.

..Trevor..

Re: * UK Sarcoidorians

Author: SteveUK (---.server.ntli.net)
Date: 02-17-04 06:14

Reference : the BMJ article

Not a reply to our posting but an interesting view from Roger A Fisken headed "choosing best treatment" typifies the views of doctors who in this case operate less than 60 miles away from me.

Please post to this article, UK sufferers - otherwise we'll never be heard.

many thanks

Steve

Re: * UK Sarcoidorians

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 02-18-04 20:44

This post was moved because it was posted in an archive thread.

Author: DarrenGE (213.78.124.118)
Date: 02-18-04 15:20

New here so hi to everyone! Currently live in South Yorkshire. I'm 34 and was diagnosed with sarcoidosis in November '02. I suppose I'm doing OK-ish. I'm off medication now and a lot of the joint pain I was suffering has now subsided. My latest chest X-Ray showed that most of the inflammation of the lymph glands in my lungs has now gone as well. Been through some scary times where I've been virtually immobilised by arthritic pain and had problems with my eyes and with the nerves in my face. But the symptoms that are really lingering involve problems with digestion and a persistent, very uncomfortable abdominal pain. Been to see the GP about it again and he's got me booked in for abdominal ultrasound and a gastroscopy. I'm hoping that I will just gradually get better as the doctors at clinic (they discharged me when my arthritic problems mostly subsided) warned me it'd be a long haul over 2-3 years before I could expect to be fully right. My question is are these symptoms fairly common in sarcoidosis? Can I expect them to resolve in the same way the other symptoms have? I think he's doing his best for me but should my GP be ordering anyother investigations?

Answer

DarrenGE,

Abdominal pain can be due to sarcoidosis. My abdominal pain was at its worst when my serum 1,25-D was abnormally elevated. The first thing to do is evaluate your daily activities and eating habits and determine how you can cut down your skin and eye exposure to light, and your ingestion of vitamin D.

Sarcoidosis waxes and wanes, but medical research (in contrast to widely-held beliefs) indicates that the majority of sarcoidosis patients still have the disease two or three years after diagnosis. In fact, the recent mutli-center case-controlled study of sarcoidosis in the U.S. revealed that the majority of pulmonary sarcoidosis patients were unchanged or worse 2 to 2.5 years after diagnosis, based on their pulmonary function tests, X-rays and shortness of breath.

In medical language, remission refers to the time when a disease is under control. Remission is not necessarily the same as a cure. I am sure that everyone rejoices with you that some of your symptoms are better, but we are giving you the facts. Most of the time, when a lung specialist says a patient is in remission, they are speaking only in terms of the lungs. Sarcoidosis is a systemic disease, likely to manifest in any body organ.

This is a tough disease to beat, but we are doing it. I have not met anyone yet who, once diagnosed with sarcoidosis, had it spontaneously go away and never return. So, please keep reading on this forum. Ask questions. Use the "search" feature to look up key words.

Best wishes,
Belinda

Re: * UK Sarcoidorians

Author: Julia (---.cache.pol.co.uk)
Date: 02-19-04 12:51

Trevor

One of the Rapid Responses in BMJ, "Good in theory, little in practice" by a cardiologist in India, has the following caution about patient choice:

"many newer modes of treatment highlighted in many reputed journals may fail the test of time and present with dangerous side effects and have to be withdrawn. similar forecast can be made regarding the treatment of sarcoidosis.if it withstands the test of time it will rapidly appear in all major texts.steroids are being used as no other forms of treatment are available and that too as symptomatic treatment without producing a cure."

Now calm down and keep your BP under control!

Julia

Re: * UK Sarcoidorians

Author: Julia (---.cache.pol.co.uk)
Date: 02-19-04 13:38

I've now submitted a further response to this response in BMJ.

Julia

Re: * UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 02-19-04 13:40

Julia,
My BP?? Let's see - 108/59 - nope that's still OK

Good work. Now you have the opening for another letter, and another opportunity to attract more interest.

I find it hard to understand why any physician would assess that there were "dangerous side effects" likely with low-dose Azithromycin and Minocycline or Olmesartan. And it is quite beyond your comprehension how anybody could compare the risks of taking those with the known certainty of osteoporosis from steroids. Not even to mention the risk of diabetes.

There also seems to be a dichotomy between "stands the test of time" and "will rapidly appear in texts". Sarcoid patients are suffering every day, and can't understand why the "test of time" might be required. And just how long a time will this "test" keep the sarc patients suffering? Anyway - you get my drift...

I would also point out that the antibiotics are not a symptomatic treatment - folks are getting their bloodwork and imaging results improving too. Cardiac arrhthymia disappear. In many cases (those who have been on the abx for longest) the bloodwork has returned to normal.

I would also point out that your own idea of "reckless" is totally different from his, and you believe that your assessment should be respected.

So there ya go - those are my thoughts. You probably have others - write a response to Dr Vasenwala and put these two references at the bottom

1. Marshall TG, Marshall FE:Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. Autoimmunity Reviews, in press, doi:10.1016/j.autrev.2003.10.001
Available from URL http://dx.doi.org/10.1016/j.autrev.2003.10.001 Accessed Feb 15, 2004

2. Marshall TG, Marshall FE: Antibiotics in Sarcoidosis - Reflections on the First Year. JOIMR 2003;1(3):2
Available from URL http://www.joimr.org/phorum/read.php?f=2&i=38&t=38 Accessed 16 Feb 2004.

..Trevor..

Re: * UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 02-19-04 13:48

Julia and Steve,
Julia says "I've now submitted a further response to this response in BMJ." Oops - we must have been writing at the same time

So let's see what comes up tomorrow, and maybe Steve might like to make these points tomorrow, if you didn't cover them all.

..Trevor..
(ps: don't forget the references at the bottom so that these BMJ folks can go and look up the papers with the protocol in it)

Re: * UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 02-20-04 06:28

Julia's post today can be read at this URL

Keep up the good work folks, this will change the way things happen in the UK. Your Docs will know that you are both doing the 'right thing' and trying to get the BMJ behind the treatments you need.

..Trevor..

Re: * UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 02-21-04 07:16

Steve's BMJ post today can be seen at this link

Excellent work, Steve and Julia. Let's see if BMJ takes action as a result. Failing any significant criticism being offered by the BMJ readers you can print these letters for your physicians as validation that there appears to be little reason for Doc to continue to refuse the therapy outlined in our papers.

..Trevor..

Re: * UK Sarcoidorians

Author: SteveUK (---.no-dns-yet.ntli.net)
Date: 02-23-04 06:09

Trevor

An interesting and supportive response has appeared today on the BMJ website from a retired statistician in Cambridge (Diana F Pargeter). I'm sure we'd all like to thank her for her support.

http://bmj.bmjjournals.com/cgi/eletters/328/7436/0-f#50874

For those not able to visit the site it reads as follows :-

_______________________________________________

Abuse of patients does not always start with a doctor denying access to alternative treatments. It may be that the doctor is unaware of, or is not prepared to admit to, the existence of alternatives.

A teacher is never a good one until he (or she) can admit that occasions will arise when a pupil will know more than he about some aspect of the subject he teaches. The good teacher will listen and learn. Likewise, a doctor may be able to learn from his patients, and should keep an open mind.

Doctors are busy people, and even the specialists deal with a variety of illnesses or manifestations of them. How can an individual possibly keep up with all the latest research in them all? A patient, concerned about their own particular problem, may be every bit as intelligent as his doctor, just as capable of learning medical terms and understanding research papers, and have a huge amount to gain by investigation. Most patients are curious beasts, and some of them find out everything they can about their condition, the prognosis and possible treatment.

One example of this is the way British patients have found out about Dr Marshall's new protocol for treating sarcoidosis, mentioned by earlier contributors. The rationale behind it is backed up by solid research, and as a statistician I find the ongoing successes impressive. It is possible that side effects could become apparent in the future, but there is, as far as I know, no other real treatment working against this disease that flares yet stays smouldering in the body for years. (Steroids have been prescribed for many years, yet these only suppress the symptoms, definitely have serious side effects and hinder the immune system from doing its job.) Thus, we find patients clutching up-to-date, potentially important information about a disease that can kill, turning up in waiting rooms.

Assuming that the doctor knows nothing about the research, what happens next? If the patient is lucky enough to enter a "good" doctor's consulting room, he will listen to a potted version, take and read the papers, discuss the pros and cons and quite likely support him in trying the treatment. At the other extreme, a "bad" doctor will dismiss the whole idea without listening to what the patient is trying to tell them, and perhaps take the papers as a sop but never read them. If this is because he has come across lots of cranks, or is very busy, he has some slight excuse. If (as it feels like to the patient) it is because he is arrogant, thinks the person cannot offer him anything worthwhile and therefore will not listen or read, then that is abuse.

__________________________________________________

A few more thinking like this and we may get somewhere.

regards

Steve

Re: * UK Sarcoidorians

Author: SteveUK (---.no-dns-yet.ntli.net)
Date: 03-05-04 01:39

Having seen no further developments on the BMJ website nor discussion on here I assume the subject is now closed as to getting UK doctors to follow Trevors protocol. I must say again as I said on Michaels site a few months ago that I'm surprised if not a little angry that so many ill people in the UK can't be bothered to do anything about their own situation.

I have again been in touch with my own GP following my last post on this subject and along with more prints out got my request for ARB's flatly turned down yet again because of her claims that A) Trevor Marshall is not a proper doctor and B) his theories are simple incorrect (her words not mine).

If more people bombarded their GP's maybe they would start to take notice, as she sees it I look like a badly informed patient taking print outs to my doctor that they aren't even going to read.

I am taking both Z+M with my doctors approval purely as she claims they cannot do me any harm. I believe like Trevor is suggesting only the full treatment will deal with Sarcoidosis and my doctor knows this but won't even take up Trevors offer of a phone call. She seems quiet happy for me to carry on filling myself with allsorts of tablets including steroids and now sleeping tablets with no idea of what the future holds for me in terms of either improved or deteriating health. I can only assume that at best the rest of the UK sufferers are following somewhere in my wake.

regards

Steve

ps. Whether it be right or wrong I can only do what is available to me, I will continue to take Z+M as detailed in trevors theory, watch my VitD levels very closely and have recently purchased 2 pairs of NoIR fit-overs (indoor and outdoor) I will hope for the best.

Re: * UK Sarcoidorians

Author: Di (---.in-addr.btopenworld.com)
Date: 03-08-04 04:53

Steve,

I think you are being unfair to your fellow UK sarcoidians, especially in the light of your own experience. I have tried to get specialists to listen to Trevor's ideas, or even to glance at papers I have taken in. The result has been either utter disinterest or oblique hostility, and I suspect you are then marked down as a 'difficult patient'.

And that's the problem, we are discussing the condition at a level most doctors have no knowledge of, reversing the traditional roles, and conflict arises when WE try to take that information to THEM. We, as people with a condition that affects our health, not PATIENTS, should be able to influence the NHS and governmental systems, such as the body that approves NHS treatments. Perhaps the doctors aren't the place to start, as approaching the 'foot soldiers' just seems to cause frustration on both sides. Having said that, I'm not sure if a direct approach to the DoH is feasible, but it may well be worth asking central government what would be involved in getting the Marshall Protocol examined.

Di

Re: * UK Sarcoidorians

Author: SteveUK (---.no-dns-yet.ntli.net)
Date: 03-08-04 15:26

Di

I appreciate your comments and agree that we are sometimes outfacing our own doctors with a subject they know little about. They are paid to do what is best for the patient and educate themselves to the most up to date levels of medicine and research anything that is mentioned in the sacred book, that being the BMJ. Unfortunately it doesn't get mentioned because it is regarded as not important enough partly due to lack of contributions. (Catch 22)

I am sorry if you feel I have been unfair to my fellow Sarcoidosis sufferers it is not my intention to offend anyone and I hope my comments were not taken out of context. However, I'm a little puzzled at what you meant by "you are being unfair to your fellow UK sarcoidians, especially in the light of your own experience" never the less I don't see myself as a member of a club I see myself as someone that wants to rid myself of a disease that is robbing me of my best years and nobody is going to do it for me. I would have thought there were more people like me but obviously I was mistaken.

From the results of my own research it would appear that a very small percentage of Sarcoidosis sufferers are knocking on doors and asking questions about their unsatisfactory treatment. My own GP still claims it's a very rare disease and shrugs her shoulders. I've seen several specialists who have all reverted me back to my Doctor and no longer need to see me. Maybe they think I'm cured? (that's a laugh) The proof of the failure of us the sufferers is that nobody in the UK has been able to get ARB's by convincing the medical profession that Trevors work is valid. Could this be due to the reluctance of any new treatment from their own GP or the lack of up to date knowledge of the specialists or both? or the simple fact that the sufferer doesn't know what to do or say and therefore they are not aware of this treatment

It is my feeling that people should approach the BMJ when prompted by Trevor on a subject close to all of us, but with the exception of myself and Julia this was not done. I am no medical person, I have no formal qualifications in the english language but I managed on two seperate occasions to contribute to the debates on the BMJ website. And other than Julia that is it. Therefore I feel that out of the thousands of sufferers that we must have in the UK it is a poor show that only two people are prepared to speak up and try to give Sarcoidosis a higher profile and get the medical profession to look at the benefits of the Marshall protocol.

best regards

Steve

Re: * UK Sarcoidorians

Author: marilyn (---.server.ntli.net)
Date: 03-08-04 15:56

Steve and Julia....

I am in admiration at the letters you have sent to BMJ. I want to send something myself, to support you and the Marshall Plan and I am not finding the way to do this right now.

I have taken the first step in bringing the abx question to the NHS consultant I have been seeing for many years. I certainly must have abused his patience in the past by refusing steroids, HRT, blood transfusions ( to help with sarcoid chronic fatigue) bisphosphinates etc etc. Yet he has somehow accepted my refusals and has been very thoughtful in his treatment. This must be acknowledged.

I emailed him recently to ask if I might have a 1.25vit D blood test and asked also if he had heard about abx being used to treat sarcoid. Yes to the blood test, that abx are being used for skin sarcoid but not to be considered a "cure"...

.I have been waiting for my appointment to discuss starting the MP. Fell ill with flu and missed the appointment so must wait till next month.

Depending on if he will agree, my GP will go along and I think that if this scenario works out it will be a positive statement to make for BMJ. And if it doesnt then of course another BMJ letter !

So this is my plan...it doesnt mean lack of support for what you and Julia are doing but I feel I would like to sendsomething very definite into BMJ .

I do hope that you are both well.......best regards Marilyn

Re: * UK Sarcoidorians

Author: Julia (---.cache.pol.co.uk)
Date: 03-08-04 16:09

Marilyn
If your doc can really get you the vitD blood test, this may be a first in UK! My endocrinologist says the lab that does it, in Manchester, doesn't offer it on the NHS, so he said he couldn't get it done.
Keep it up!

Julia

Re: * UK Sarcoidorians

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 03-08-04 18:40

Julia,

In a previous post,Trevor had this to say about the NHS:

The test for 1,25-D is unknown to most doctors in the UK, but you can help Doc by printing out the test data listed at this link

The info about the lab which does it (Royal Manchester Infirmary) says that your local NHS network can draw the blood, freeze it and send it to Manchester. There is a map of the UK centers for drawing the blood atthis link

The SAS-centers are part of the reorganized NHS pathology services. You will note that the SAS center lists sarcoidosis as one of the conditions where 1,25-D measurement may be helpful.

The test for 1,25-D in the UK is described at this link

The SAS-centers are part of the reorganized NHS pathology services. I therefore have no idea why the Royal infirmary testing would not be covered by the NHS, and I recall seeing something somewhere once saying it would be. I would recommend that you INSIST the hospital gets the testing done for you under the NHS and let them come up with the explanations for any charges...

Re: * UK Sarcoidorians

Author: Diana (---.cache.pol.co.uk)
Date: 03-09-04 08:54

Steve/Marilyn/Julia,

You are wrong on a number of counts. Steve and Julia are wrong in assuming that they were the only two responding to the BMJ. I am the "retired statistician". It did not seem necessary to admit to being any sort of patient.

I have also been prescribed the full dose of Olmetec (Benicar) by my GP, together with minocin (now reached 75mg 3 times a week). And, I am making good progress. So, someone in the UK IS following the Marshall Protocol properly! From everyone else's point of view though, the snag is that the consultants I have seen have not decided or managed to verify by biopsy if I have sarcoidosis. The latest (who I see tomorrow for the second time) was prepared to let me continue on the MP, although he said in November that he wouldn't have tried it himself without more information. Clearly, until they have seen it working for themselves they are unlikely to spread the word. I also would expect them to feel the need to decide on a diagnosis before advocating the treatment for people with sarcoidosis. I was just lucky to have GP who has known me for years, thought the MP was the logical thing to try, and who was brave enough to stick his neck out and prescribe ARBs as well as minocin.

Lastly, saying that 1,25D testing cannot be done on the NHS is nonsense. My blood was frozen and transported to Manchester and I certainly haven't paid anything. It takes a long time though (a few weeks), because as a relatively rare test Manchester only does a batch when they have several samples to do at once.

Diana

Re: * UK Sarcoidorians

Author: angie (---.proxy.aol.com)
Date: 03-09-04 11:34

Trevor and all. Just to let you know that I had no trouble at all getting the Vit 1,25-D and 25-D tests done by my G.P. The Lab was at Frimley Park Hospital in Surry,just up the road from where I live. Now getting an ARB in place and azithromycin a little down the line were both refused by my G.P frustrating or what! Angie

Re: * UK Sarcoidorians

Author: Julia (---.cache.pol.co.uk)
Date: 03-09-04 16:20

Diana, Angie,

Thanks. Yes, I thought it was too much of a coincidence if there were two Diana's from Cambridge knowledgeable about sarc! Good on ye, as we say in Belfast, =good for you!

I think I just might have another go at getting D-metabolites tested, backed with your info. I find all the tests take weeks anyway - I'm still waiting for my last ACE & calcium, and results of a skin biopsy.

Julia

Re: * UK Sarcoidorians

Author: Di (---.in-addr.btopenworld.com)
Date: 03-10-04 05:13

Steve, Julia and everyone,

I certainly didn't mean to detract from your achievement with the BMJ, but am sure there are many people who have tried to get alternate treatments (not alternative, because then Prince Charles might help!) and become discouraged by the seeming inflexiblity of the medical profession, or at least the greatest part of it. I have not given up, and will continue to nag both specialist and GP for ARBs as well as Minocin, which I have been perscribed.

One major difference in the US is that they have a 'market-driven' medical profession, and, from reading postings from Australia, it would appear their health system is more progressive. What is so frustrating in this country is the inability of the NHS to react with any speed to new protocols, as well as the attitude of the 'establishment', which could hardly be described as go-ahead.

I agree that you are approaching the right people through the BMJ, and perhaps we should also talk to our local MPs, as 'patient choice' could well be an important feature in the coming general election. And to the Department of Health, who fund the research into new protocols.

Di

Re: * UK Sarcoidorians

Author: marilyn (---.server.ntli.net)
Date: 03-12-04 03:22

Di,Steve,julia and all......

I saw my GP yesterday and he informed me that new NHS money saving directives have caused Worthing Hospital to refuse to do some of the blood tests he requested for me. Also in effect on NHS are orders to prevent xrays unless absolutely necessary..... on health grounds !!!!! ????

So I think that along with general antagonism towards new treatments there may in future be a lot of hesitation to long term arb and abx prescribing. Its a good excuse anyway. Of course the steroids cost money, but cost is always a good cop out.

I like your suggestion,Di, re: talking to local MPs and Dept of health......

I am confined to home with debilitating chest infection but will give a good think about the above when mental functions stabalise.....

I understand that Alexia wants help and support for her mother re:sarcoid.
My suggestion would be to get a referal to one of the teaching hospitals with a sarcoid clinic....Royal Free Hospital London has such a clinic, both Thoracic and Rheumatology....I have read somewhere on these threads that Royal brompton does too..

Regards to all....Be well

Marilyn

Re: * UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 03-12-04 04:08

Marilyn,
Your doctor must think you are very gullible.

The total cost of the antibiotics and ARBs required to throw off this disease is less than the cost of a thoracotomy biopsy, or an operation to fix your eyes, or a liver or kidney transplant. And by the way, how many months of antibiotics can you get for the cost of each of those Consultant apointments?

You have to get through to your Docs that Sarcoidosis maims and kills. That Sarc is preventing you from functioning properly as an individual.

Personally, any physician who cites cost as a factor in this disease needs to be thrown out of the NHS, in my opinion. I will say as much to his face, if he has the guts to call.

..Trevor..

Re: * UK Sarcoidorians

Author: SteveUK (---.no-dns-yet.ntli.net)
Date: 03-12-04 05:40

Julia

I got my blood test done last year at The Royal Liverpool University not Manchester which is where I was told it was being done. I know nothing of the place. Unfortunatley for me for some reason they use a complete different set of guidelines as to what is "normal". For those that didn't see my results in an earlier post. in 1.25 VitD they were 127 in a range of 43-144 pmol/l and in 25-OH they were 28.0 nmol/L in a range of 15 -100. A comment on the report stated "1,25 vitamin D within normal levels.

Trevor will confirm that this is incorrect they are using the wrong guidelines
but refuse to accept this. My GP and Hospital Specialists now think I'm wasting their time, they won't speak to Trevor and I am furious to say the least. Considering I was on a high dose of Steroids at the time this would have given a lower reading according to Trevor, this was also not allowed for.

This reason I say all this is I'm sure I will not be the only one that after a whole year chasing various people to get the blood test done it may as in my case give nothing but false results and give the UK doctors what they want, and that is proof that the whole Vitamin D theory is rubbish. I strongly dissagree with this but then who am I? Only an unknowledgable patient eh!

regards

Steve

Re: * UK Sarcoidorians

Author: Alexia Nicoloaou (---.force9.co.uk)
Date: 03-12-04 06:18

Marilyn,

Thanks for your advice.

My mum has an appointment next Thursday 18th March to see her consultant. I have already posted all the info from this site to her him and I'm going with her next week to see what he says.

She was on Steroids for 3 weeks which she had to discontinue due to making her very ill (she has stomach ulcers and they make them worse). She is going back to see what other treatment they are going to give her.

Fingers crossed that the consultant will be open minded and perhaps even be willing to give Trevor a call.

I'm afraid that they will put her on an alternative treatment such as Methtrexate or Chloroquine. I guess this would be better then nothing until I can convince them..... I am aware that they have bad side effects but if there's a slight chance it may help her, it's got to be better then nothing.

Re: * UK Sarcoidorians

Author: marilyn (---.server.ntli.net)
Date: 03-12-04 07:12

Alexia....

Where/ who is your mothers consultant, is he a sarcoid specialist?
I do wish her well, She is very fortunate to have you supporting her...

Good luck

Marilyn

Re: * UK Sarcoidorians

Author: marilyn (---.server.ntli.net)
Date: 03-12-04 07:23

Steve....

Trevor has done a lot of splendid research to produce the paper on VIT D.One of the sources he used was by DR Beynon who I beleive is the same Dr Beynon I see at the Royal Free Hospital in London. I was diagnosed with sarc over 20yrs ago and was told then to keep out of the sun even given exppensive cream to use (no help we now know) But .no explanations given. Last year when I saw a nutritionist privately he corresponded with Dr Beynon about the suppliments he had prescribed. Dr Beynon replied." .OK but watch out for Vitamin D. "

So Vitamin link with sarc is NOT an unkown.

Please look up The Cleveland Clinic page on Sarcoidosis..most of the material is the usual stuff..however there is a bullet pointed statement about 1.25 vitamin D which you can show your people. ....

I shall try to find other material to prove the point and will send you whatever/whenever. It is obvious that nothing new can get through,but old stuff upon which the new is based might !

Be well.....courage....Marilyn

Re: * UK Sarcoidorians

Author: Alexia Nicoloaou (---.force9.co.uk)
Date: 03-12-04 07:24

Her consultant in in Scunthorpe. I think he's a lung specialist. Scunthorpe is a fairly small town so there are no specialist in this field unfortunately.

Please keep me inform as to how you get on.

Re: * UK Sarcoidorians

Author: marilyn (---.server.ntli.net)
Date: 03-12-04 09:55

Alexia....

Could you ask your mothers consultant to refer her to one of the large London teaching hospitals that have a specialist sarcoid clinic.....Royal Free Hospital in North London for example. He can do that ....of course that means the long trek to London but many people do it.

regards, Marilyn

Re: * UK Sarcoidorians

Author: marilyn (---.server.ntli.net)
Date: 03-12-04 10:01

Trevor......

In his defense, my GP is very synpathetic to your study. He was only relaying the latest NHS money saving facts to me and it is my own conjecture that in future cost will be used as the new excuse by many doctors for any and everything a patient may ask for that may not agree with their opinion.

I agree with your points of course and if I had felt really serious about those blood tests being relevant I would have fought for them....instead I gave doc another one of your papers to read! Soon he will know more about sarc than most GPs.....

regards

Marilyn

Re: * UK Sarcoidorians

Author: Julia (---.cache.pol.co.uk)
Date: 03-12-04 16:07

Fellow UK Sarcinfolk,

My nice endocrinologist, who is very sympathetic but conservative and won't give me Olmetec in case of unknown side-effects at the high dosage needed, has asked me to come to a physicians' meeting in April where colleagues get together to discuss "interesting cases" - I'm to be a live exhibit!

Let's hope something comes of this here in N Ireland for a start at least...

Julia

Re: * UK Sarcoidorians

Author: Pippit (---.aep.bellsouth.net)
Date: 03-13-04 00:55

Julia,

This is a great opportunity to educate! Maybe you could find out how many doctors will be there and come armed with hand-out sheets of Trevor's papers for all.

Pippit

Re: * UK Sarcoidorians

Author: Pippit (---.aep.bellsouth.net)
Date: 03-13-04 01:22

Alexia,

Hang in there and stick to your guns. If worst comes to worst and the doctor still doesn't give the proper prescriptions the best thing to do would be just to keep her out of sunlight, reduce vitamin D in her diet, and have her take it very easy.

I went through the same thing. My first doctor; a Rheumatologist wanted to give me the other drugs that I knew were not good for me and how I handled it was just to stay in bed for the most part, get extra sleep, keep out of the light and watch what I ate until I was able to get a doctor to do this. The additional sleep and staying indoors did help while I was waiting.
I'm really glad I didn't cave in under the doctor's pressure because the other medications wouldn't have been better than nothing. The goal is to kill the bacteria. Other drugs are dangerous in that they often just let it go underground. That makes it hard to assess what is really going on in the body because the traditional medications fool you into thinking you're better than you actually are by suppressing or inadequately treating the immune system.

Marilyn has some good suggestions. If your doctor won't budge after this next appointment it may be best to look into a doctor at one of the other clinics or hospitals.

You'll want to have a clear knowledge of what and where the symptoms are so that you will know where the antibiotic is working once she gets started.

Pippit

Re: * UK Sarcoidorians

Author: SteveUK (---.no-dns-yet.ntli.net)
Date: 03-13-04 04:47

Maryiln

I think you might have misinterpreted what I meant. ( I have a knack of doing this) I am one of Trevors greatest supporters. I strongly believe in everything he is saying. It is my Doctors and Specialists who are rubbishing his theories, ie. ARB's, Vitamin D etc, this is why I am becoming increasingly frustrated. I have armed them with every document possible and tried to back these up with my thoughts and experiences to what I want and what they give me, ie Steroids, but here in my part of the world they wear blinkers all day long and will not listen to what is clearly making people better and rufuse to talk to Trevor because they say he isn't a doctor. THEIR WORDS NOT MINE.

I await the day this will change and hope to hold the record for holding my breath at the same time.

kind regards

Steve

Re: * UK Sarcoidorians

Author: marilyn (---.server.ntli.net)
Date: 03-13-04 11:26

Steve..

I do understand what you are saying and fully sympathise. It is a very frustrating business bucking the system and please know that you are not alone out there ! Can you get a second opinion referral to another specialist in London perhaps? Royal Free Hospial Rheumatology is where I attend . Another UK Sarc,Alison attends the same clinic.

From Alison,( Nov 25 2003) I understand they are aware of the MP and although sceptical may be willing to accept a trial. They also gave her the vit blood tests,but she had to wait nine months for results ! I have been also told I can have them and I will persist on getting results sooner.

She also said that altho dismissive about the abx she was given a prescription for them and was awaiting one for arbs...

I suggested those Vit D sources for you as back up to present as "establishment" views on vit D.......to get them to take you seriously....its not an unkown medical mystery.

Anything published independantly is scoffed at...try to back up your claims with PUBMED publications or from other accepted sites......

Please keep breathing...lots of oxygen is supposed to be good for us.......

Its calming too.......

Be Well Marilyn

Re: * UK Sarcoidorians

Author: Pippit (---.aep.bellsouth.net)
Date: 03-13-04 20:26

Steve,

Have you provided your doctor with any of Alan Cantwell M.D.s papers? This is a doctor he might listen to.
Bacteria in Sarcoidosis and a Rational for Antibiotic Therapy in this Disease
Published in JOIMR 10/5/03
By Alan Cantwell, M.D.

Also, here are two papers by Herve` Bachelez, M.D. One of them appears in JAMA, a very well-respected medical journal:
Minocycline, doxycycline effective treatments for Sarcoidosis
Published in Merck Medicus Best Practices of Medicine 1/19/01
By Herve Bachelez, M.D. Ph.D

The Use of Tetracyclines for the Treatment of Sarcoidosis
Published in JAMA (Archives of Dermatology) 1/01
By Herve Bachelez, M.D., Ph.D

Here are also a few more links to papers that might be helpful in proving that the science behind this is sound, these drugs do work, and that the groundwork on which this is based has been done by M.D.s.

Supporting Documents for ARBs (Benicar)
Protective vascular effect of angiotensin receptor blocker (ARB) (compared to diuretics)

An angiotensin II type 1 receptor antagonist, olmesartan medoxomil, improves experimental liver fibrosis by suppression of proliferation and collagen synthesis in activated hepatic stellate cells.

Please let us know your doctor's response to these articles and I hope this will help.

Pippit

Re: * UK Sarcoidorians

Author: Alexia Nicoloaou (---.force9.co.uk)
Date: 03-15-04 05:57

Marilyn,

Thanks for your advice about going to specialist clinic. Do you know if they are carrying out the MP at Royal Free Hospital in North London ?

Alexia

Re: * UK Sarcoidorians

Author: Michael C (---.client.mchsi.com)
Date: 03-15-04 06:22

Hello all,

I am from the US, not the UK, but I have been reading about your battles with the UK medical system with interest. In light of your discussions here and in the letters to the BMJ, I thought the following article would be of interest to you.

Suing for the Right to Live:Two cases of European doctors refusing to treat their patients are cause for concern: Futile Care Theory may be coming to America.

The views of the medical profession discussed in this article are at the heart of your fight for patient rights in the UK. While you are fighting to have a voice in your own medical treatment, there are offficial guidelines being developed....and in some cases are in place...to totally strip you of any right to even decide whether you live or die.

I am not sure if it is too late to bring any of this information into the BMJ discussion, but it certainly is relevant.

Michael C

Re: * UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 03-15-04 06:55

Michael,
The specific issue of danger to Sarc patients is a universal one. The Pulmonary specialists have together decided that once a sarc patient loses significant lung function, and needs oxygen, they will never recover. This is false. Kirk#1 here on SarcInfo weaned himself from 24/7 oxygen during antibiotic therapy.

Nevertheless, if you are a sarc patient exhibiting respiratory distress in a hospital environment there is a good chance you will die, or to be allowed to die.

I am not sure why the pulmnologists were ever allowed to monopolize sarcoidosis in the first place, it is not just a pulmonary disease. Especially as they seem to be the ones painting the bleakest picture. Studies have shown that a pulmo's ability to judge a patient's status is not good. That is a very present danger - and that is a worldwide problem.

..Trevor..
ps: Luiggie, founder of the Sarcoid Connection, died in hospital last Saturday. Here is a picture of Luiggie taken at the Indy Sarcoid conference just 4 months ago.

Re: * UK Sarcoidorians

Author: Di (---.in-addr.btopenworld.com)
Date: 03-15-04 08:41

Marilyn, Steve and everyone,

I have visited the Department of Health website www.doh.gov.uk and under the Contact Us section there is a facility to email the Secretary of State for Health or the DoH Customer Service Centre, with a side link that takes you through to email/contact your local MP. I have done so, to ask whether the DoH would sanction a trial into the use of antibiotics and ARBs to treat sarcoidosis.

If you add your comments maybe we will get a reaction.

Di

Re: * UK Sarcoidorians

Author: Alexia Nicoloaou (---.force9.co.uk)
Date: 03-15-04 09:34

Di,

Well done.

Do you think if all of us in the UK contacted them it would make any difference ?

Re: * UK Sarcoidorians

Author: SteveUK (---.server.ntli.net)
Date: 03-15-04 11:04

Alexia/Di

I'm sure it can't do any harm, maybe a lot of different MP's will receive some form of communication seeing as we all live in different parts of the country but if they discuss new business, like they should, it will be brought up as a serious matter if a considerable amount of us make our feelings known.

I for one will be having a go.

thanks Di

regards

Steve

Re: * UK Sarcoidorians

Author: marilyn (---.server.ntli.net)
Date: 03-15-04 14:41

Thanks for the info Di.....I will write asap.....

Alexia.....

.The Rheumatology Clinic at the Royal Free Hospital is where your mother would see someone in the Sarcoid Clinic. If she has lung sarcoid perhaps she would see someone in Thoracic dept. Her doctor in Scunthorpe must make the referral...

My consultant in the sarcoid / rheumatology dept has told me that " yes antibiotics have been used for skin sarcoid." But Antibiotics are NOT generally being used for sarcoid...

.First your mother has to be referred to the Sarcoid clinic.. your mother must then be assessed as a new patient . They may even take lots of tests . When you are inmformed of the treatment they consider best YOU must then REQUEST the antibiotic treatment and be prepared to have the arguments for it ready. I would strongly advise you not to go rushing in and telling them what you want before all tests have concluded just what is the state of mothers sarcoid....then proceed with your request for the MP treatment....easy does it, slowly slowly ! And there is no guarantee they will agree to the abx!

First step: get referred to Sarcoid Clinic Royal Free Hospital.....

HOpe this helps, warm regards, Marilyn

Re: * UK Sarcoidorians

Author: Alexia Nicoloaou (---.force9.co.uk)
Date: 03-19-04 02:57

Hi all,

Just wanted to let you know of my experiences with my mums doctor yesterday.

The appointment was with the registrar (junior doctor). He didn't seem to know about avoiding vit. D and told us that the ONLY treatment they can give is Steroids as NOTHING else has had any form of long term study. I was asking many questions which thanks to your great site I was able to a i.e about folic acid and he wasn't able to answer them. He then got the top doctor in who basically wasn't happy with me and told me not to believe everything I read on the internet.

My mum has got stomach ulcers and had to dicontinue steroids after 3 weeks as the made her feel 100 x worse but the doctor insisted that steroids were the ONLY treatment and that it probably wasn't the steroids that made her ill. He wouldn't even discuss MXT never mind the MP.

I need a good doctor in the UK. Can anyone please recommend anyone, someone that is willing to just listen and answer my questions and maybe even discuss the MP.....

Re: * UK Sarcoidorians

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 03-19-04 08:31

Hi Alexia,

Your experience with the UK doctors is familiar. What is unusual is their refusal to admit that the Prednisone caused her gastric upset (this is a common side effect of Prednisone) and their refusal to order Methrotrexate. At least now you know that you need to find a different doctor. There is one doctor is England on the RA list of doctors who has used minocycline. I'll send you his name and email address.

Good luck,

Meg

Re: * UK Sarcoidorians

Author: Alexia Nicoloaou (---.force9.co.uk)
Date: 03-22-04 07:29

Thanks Meg for that info and I have received your e-mail. I won't give up !!!!!!!!

Re: * UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 03-26-04 06:04

The BMJ has published an article about "The Expert Patient".

This presents an excellent chance for you UK activists to start interacting with your Docs. Note the letter from Dr Walsh about bmjlearning.com

Maybe somebody whould write to Dr Walsh and ask him how UK patients identify and contact the 7 doctors in the UK

who have indicated a willingness to listen to their patients.

..Trevor..

Re: * UK Sarcoidorians

Author: Alexia Nicoloaou (---.force9.co.uk)
Date: 03-29-04 04:33

Does anyone know of any brands of multi vit/mineral that don't contain Vit D available in the UK ?

Re: * UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 03-30-04 08:11

Diana has posted another excellent comment on the BMJ at this URL

Maybe sometime soon somebody will take notice, and even if not, there are still these excellent BMJ letters to show to your own GPs/Specialists and make them feel more comfortable that you really are trying to do it right...

..Trevor..

Re: * UK Sarcoidorians

Author: Julia (---.cache.pol.co.uk)
Date: 03-31-04 14:51

I've added a Rapid Response to the BMJ article as well.
Julia

Re: * UK Sarcoidorians

Author: Admin (---.vnnyca.adelphia.net)
Date: 04-01-04 10:00

Julia's post can be read at this URL

..Trevor..
ps: Excellent job, Julia

Re: * UK Sarcoidorians

Author: Julia (---.cache.pol.co.uk)
Date: 04-17-04 13:17

Fellow UK sarcinfolk,

As I mentioned in a previous post, on Monday I attend a physicians' meeting at our biggest teaching hospital here in Belfast. My endocrinologist is presenting my case to colleagues in different departments (I gather there could be 20 or 30 docs!), because of my dramatic reactions to vitamin D.

To him, he says, the vit D/hypercalcaemia relation to sarc is straightforward, but it presents an "interesting case" to those in other disciplines who are not so familiar with it.

He has given me permission to mention Trevor's research. What he doesn't know (as it was my GP who prescribed) is that I've been on minocycline since I last saw him two months ago, and will be reporting that mino has a dramatic effect too!

Julia

Re: * UK Sarcoidorians

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 04-17-04 19:37

Julia,

You are a real medical pioneer. I think those doctors are in for a bit of a surprise when they hear from an 'expert patient'. Thanks for paving the way for others in Ireland. I'll be anxious to hear all about it.

Meg

Re: * UK Sarcoidorians

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 04-17-04 20:05

Julia,

That's very good news. Your perseverence has allowed you to help yourself, and now you are helping others. By reaching more physicians, you are applying your personal experiences and understanding to a most critical application.

Good luck,
Belinda

Re: * UK Sarcoidorians

Author: Julia (---.cache.pol.co.uk)
Date: 04-19-04 12:04

UK Sarcinfolk,

The little lecture theatre was packed � there were about 60 docs from all ranks and disciplines! My nice-but-conservative endocrinologist (who is a teaching professor at this major teaching hospital) did a power point presentation of how I had been referred to him last summer when my blood calcium level soared in the good weather, focussing in particular on the bit that others might not be familiar with � the fact that I�d been taking cod liver oil capsules (1000mg/day, giving 5�g vit D) for a year or so, gradually getting more and more thirsty.

Then he interviewed me, deliberately giving me opportunity to mention the MP, and a few more docs asked me questions. It was all rather brief and rushed, as we had less than 25 minutes altogether, and some of that was for further questions at the end with me out of the room. But it was enough, I hope, to give food for thought, and there were senior docs there who definitely pricked up their ears. One senior looking guy rattled off an explanation as to what an ARB would do that an ACE inhibitor wouldn�t � I didn�t understand a word, but he sounded just like Trevor when he goes all technical!

Afterwards my nice endocrinologist was very willing to take another sheaf of papers, mainly on Olmetec, that I'd brought with me. I've also passed to him the contact in Sankyo who said there were test results for higher dosages than the recommended ones.

Julia
(somewhat weary - it was a bad head day - but definitely encouraged)

Re: * UK Sarcoidorians

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 04-19-04 14:38

Julia,

Good job! Thanks for sharing. You've planted a few important seeds today and made a real difference for sarcoidosis patients.

Thank you,

Meg

Re: * UK Sarcoidorians

Author: Julia (---.cache.pol.co.uk)
Date: 05-24-04 14:12

UK Sarcinfolk,

My lovely lovely GP has just given me Olmetec!

I saw him today to report on how I was doing after three months of mino. When I said what a dramatic improvement I'd had at first, and how the herx was now tailing off just as predicted, he was cautiously willing to complete the trial. He said he wasn't going to write the dosage on the scrip or the pharmacist would pass out!

So tonight I start the MP proper. I hope it won't be long before all of us get a chance at it. Keep up the persuasion.

Julia

Re: * UK Sarcoidorians

Author: marilyn (---.server.ntli.net)
Date: 05-24-04 15:30

Julia.....

Wonderful news and what a wonderful GP..

Will you be starting on the low dose as per the FAQ, of which Trevor reminded me .....my GP wont let me start at 40mg and has asked for consultant confirmation to ramp up to 40mg !

Please do let us know how you are doing...

Good luck and good health

best wishes

Marilyn

Re: * UK Sarcoidorians

Author: Julia (---.cache.pol.co.uk)
Date: 05-24-04 15:54

Hi Marilyn,

My doc asked me if Trevor recommended ramping up the dosage. As I understand it, Trevor reckons you can start on the high dose straight away, and only suggests ramping if it helps to reassure Doc. Anyway he said I could do whatever Trevor said! So I'm starting on the full dose of 40mg x3 - dropping the mino of course for a week or two.

All the best

Julia

Re: * UK Sarcoidorians

Author: Pippit (---.asm.bellsouth.net)
Date: 05-25-04 06:59

Julia,

That's great news!

Maybe this will pave the way for others.

Pippit

Re: * UK Sarcoidorians

Author: justine Elliott (---.range81-152.btcentralplus.com)
Date: 05-25-04 10:34

Hello to all

I hope that this post enters the right topic section as I got confused with the format

I have been reading as much as poss on the MP and am about to embark on the MP under the guidance of my UK Cons/doc.

Can anyone in the UK share their positive experiences to obtaining the 1,25d tests etc.?

I have today contacted the Manchester Infirmary for advise on arranging the test and received a reply stating that the test could be carried out within a local hospital? and not with them, Is that correct?

Why would they be listed on SarcInfo if they are not avialable?

Having read some of the previous post, I am confused to what I should be doing here, can this be arranged via the NHS? via my GP?

Can someone give me some pointers?, as I would like to check my levels prior to commencing with the MP, I have no problems in obtaining the Olemetec/Benicar and mino.

It would seem incomplete to start without the levels being measured, even though I have heard of many that go ahead without any tests, I personally would prefer to have my checked first.

Hoping that someone can guide me through this.

I do have the literature printed off the web site for the GP and the lab, just dont know now where to go with it.

TIA

Justine

Re: * UK Sarcoidorians

Author: Diana (---.cache.pol.co.uk)
Date: 05-25-04 11:46

Justine,

The blood is drawn at your local hospital, and your consultant chould arrange that (or possibly your GP could ask for it, but you have to go to the hospital rather than having blood taken at your local surgery). It has to be frozen straight away, then it will be sent by the hospital to Manchester Royal Infirmary for testing. A potential problem is that the person who takes the blood must realise it cannot hang about in the Phlebotomy Department till the next batch of bloods are taken to the labs. It must be taken and frozen straight away. Because the 1.25D test is so rarely performed in the UK, most blood takers do not know that. Hospitals commonly send blood away for testing of one sort and another, but it is important to stress that it must go to Manchester (still, I believe, the only one that does 1.25D testing, as opposed to 25D which they all do). What happened to me was that the issue was muddled by my doctor asking for 1.25D and 25D. The local hospital did the 25D and didn't know why I wanted the other. If just 1.25D is asked for, then you will AUTOMATICALLY get the 25D results too, as 1.25D is useless without the 25D and even Manchester has worked that out! Because the test is rare, they only do the testing when they have several samples. It is thus a matter of luck as to whether the results are back in 2 or maybe 6 weeks.

Diana

Re: * UK Sarcoidorians

Author: justine Elliott (---.range81-155.btcentralplus.com)
Date: 05-26-04 10:48

Hello Diana

thanks for the comprehensive reply.

As I am VERY new to the MP, that is not commenced with it as yet, can you advise to whether its just the 1,25D test and NO other needed? As I have read that there are 3 tests to undertaken? is that right?

Sorry for the all the questions, but we have to start somewhere

and as my UK consultant is not offering to get the test set up for at this stage, he's new to the MP, I am trying to get ahead by trying to get the tests done from the other end of the Country to him.

Still if I managed to do the Western Blot and get it to the States un aided, I am hoping that I can pull one this off!

Could you please (or others) confirm to which literature will be needed to support the bloods request, including those that my GP/Consultant will need and the papers for the lab?

I sure this has been covered by many previous post, but there is sooooo much to digest and I am trying to streamline the admin with severe brain fog?

I am right in thinking that the test will be covered by the NHS? including the transportation to Manchester Infirmary?

I received an email from Manchester Infirmary today, just to get confirmation that it was still valid and thank goodness it was, but they did not eleborate further than that, and I know I will have a 101 questions from my UK GP, I really want to be prepared!!!

Thanks for getting this far on my post.

BW

Justine

Re: * UK Sarcoidorians

Author: jai (---.cache.pol.co.uk)
Date: 05-26-04 15:01

Hello to all,
I am new to this site, but i am so keen to try Trevors protocol and i would like to know if any one is seeing a Dr who is aware of it, as i would like to ask my gp if she will let me try it and if she can contact another Dr she maybe willing, I don't want to bombard her with to much
reading so any suggestions on what i need to give her would help me a lot
I live in Yorkshire and if any one is nearby or far i would like to hear from you.

Jai
.

Re: * UK Sarcoidorians

Author: Diana (---.cache.pol.co.uk)
Date: 05-27-04 01:27

Justine,

Trevor's page for patients entitled "How does Doctor measure my ACE, and my D-metabolites?" (click the title in the Patient Tutorials at the top of the page) gives info on which tests to do. As I said before, 25D will be done in conjunction with 1.25D. The ACE is a separate thing. You shouldn't have to pay anything at all.

If you want papers for your GP to read, look at the Papers for Physicians at the top of the page. The "Protocol Phase 1-First 3 months" should be useful (it wasn't available when I started treatment), together with "New Treatments Emerge..", and maybe "Antibiotics in Sarcoidosis- The 1st Year". The problem is not overloading him/her yet making him/her understand. I told my GP about the Marshall Protocol, then left papers for him to read. He thought about it for a few days then wrote to say I could collect the prescriptions. You maybe ought to stress that everyone has to go at their own pace. The "first three months" could be much longer if you are in a really bad way (which I hope you are not!) and the regime is not a quick fix.

Diana

Re: * UK Sarcoidorians

Author: JOHN S (212.162.234.---)
Date: 05-27-04 03:01

Jai,

Hopefully you will get the answers and advice you are looking for here on this thread.

But may I mention that there is an online discussion group which was set up specifically to help UK people interested in treating their various conditions with the AP protocols.

I know that there are members of the group that reside in Yorkshire, who will be able to give the answers to your questions.

The Link is... http://health.groups.yahoo.com/group/abtuk/

Hope this is helpfull.
Regards,
John.

Re: * UK Sarcoidorians

Author: justine Elliott (---.range81-154.btcentralplus.com)
Date: 05-27-04 06:30

Hello Diana

thank you for taking the time to point to the papers to help me along with starting the MP.

I am hoping that my GP will accomodate, fingers crossed that I can convey the importance of how the MP may be of benefit to us Lymies and not just to Sarc patients, he doesn't see if at the mo, but that wont deter me as he said the same about B12 and Mag IM, and I now have both!! after much persuing and educating

regards

Justine

Re: * UK Sarcoidorians

Author: Di (---.in-addr.btopenworld.com)
Date: 07-06-04 09:31

Trevor,

I had a meeting with a chest specialist yesterday that deteriorated into the usual disagreement (slanging match) about treatment. He categorically refused to perscribe antibiotics, let alone ARBs. Unfortunately, I've got a lot worse during this year and he pointed out the measureable decline in my lung function and chest x-rays, plus increased symptoms. He said it has become obvious that I don't have the self-limiting kind of sarc, but a chronic, progressive form.

The outcome is that I am back on the evil pred. He was very heavy, saying that I was 'close to the point of no return' and that without treament I had an 'uncertain prognosis' - actually, I would expect it to be extremely certain

He also informed me I looked terrible and accused me of being 'in denial' about how ill I was. I would disagree, strangely enough, I'm well aware of how unwell I am.

One thing he did say was that, if I could find a chest physician in the UK who is perscribing the Marshall Protocol he would refer me to them. However, he did say say my can't breath/can't swallow problem with mino wasn't herx but somthing altogether more dangerous.

So, I need to find out if there is a chest physician perscribing your protocol in the UK, or one that's more sympathetic to new ideas. I will try contacting the major city hospitals, but do you know of anyone? This man really upset me yesterday, so I'd be perfectly happy to move on.

Re: * UK Sarcoidorians

Author: JOHN S (212.162.234.---)
Date: 07-08-04 05:26

Hi fellow Uk Sufferers,

I'm gathering information for a proposed onslaught via the UK media to promote the awareness of Antibiotic therapy in the UK...

Does anyone know the number of people suffering from Sarcoidosis ( or other autoimmune diseases ) in the UK?

Or perhaps suggest where that information might be found?

Thanks in anticipation,
John (Abtuk)

Re: * UK Sarcoidorians

Author: Craig Strachan (-