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 The material here provides useful background, but much of it is now out-of-date.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 1st 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 5ìg 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 (---.server.ntli.net)
Date:   07-20-04 13:02

Hi all

I posted this on the main general sarc q's earlier this week and just want to start with it againg so people get a general background to my situation.

"I went to my doctor with complaints of breathlesness in Nov 99, where he told me that it was asthma triggered by my smoking, which i have stopped now, and gave me a lecture pointing out that it was my own fault. He did send me for a chest x-ray though wher it was founf that it was not asthma, i was told it could be lung cancer, pneumonia or HIV & pneumonia. I was sent for a flexible bronchoscopy where I was diagnosed with type II sarcoidosis of the lungs. It was then that i realised that my sympyoms of bed sweats, breathlesness, general lethargy and tired eyes were not due to late nights on the town in a hot country. Then for a period of eleven months i was taking prednisolone, starting at 60mg a day and eventually weening off in Aug 00 when my Chest X-ray showed improvement.

I was reviewed quarterly by my doctors and eventually in Aug 02, due to an increased level of breathlessness and, for the first time, a tightning of the throat, as though someone constantly had their fingers squeezing my windpipe, i was put back on prednisolone at 40 mg. Then in Aug 03 i was put on both prednisolone, by that time it had reduced to 10mg per day, and azathioprine at 150 mg per day. In Jan 04 i was taken off the prednisolone and left just taking the azathioprine still at 150 mg perd day. Now i feel that the breathlessness is returning, i do not have a persistant cough, but i i seem to produce a lot of spit from my throat (not sure if i am explaining myself).. Now i am unsure what to do, i know i have to see my doc to check on what is going on, but i do not want to back on prednisolone, the side effects of weight gain(i was 11 1/2 stone before sarcoid and at my biggest with steroids i was almost 15 stone), acne, mood swings (severe)."

Now to my question to all of you, My Consultant is at Peterborough District Hospital and i wondered if anyone else had been to the same hospital as i go to see him for my quarterly review on 30 Jul and if someone else had done some promising groundwork, or received a bad reception to the Marshal Protocol then i would be forearmed.

If noone has been to Peterborough my aim is to go armed with information but do not want to swamp him and risk the "i'm the doctor son attitude"which i am sure he wouldn't anyway as he seems very amiable, but, can anyone provide an essential list of articles i should take so he knows exactly what the dosages and protocol is without going over the top.

Many thanks

Craig Strachan
Bucks

p.s. sorry if this post is a bit confused but i am tired today and had a bad spell earlier of odd lights in my vision

United Kingdom
 
 Re: * UK Sarcoidorians
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-20-04 18:19

Craig,

The papers your doctor should read are listed at the top of this page. You can print out any or all of these Papers for Physicians. The "How to Start the Marshall Protocol guideline for doctors is the last paper listed. You may want to highlight key points in the papers for your busy doctor to scan at the first visit.

I'm sure if any of the other UK posters have had experience with this doctor or hospital, they will let you know.

Meg
 
 Re: * UK Sarcoidorians
Author: James Anderson (---.31.228.fdial.global.net.uk)
Date:   07-21-04 13:29

Hello to all.
My name is James and i live in the UK just outside of Manchester.
A brief history goes like this.
About May/June of last year(2003) i developed a slight wheeze which i put down to a cold.I did'nt have any of the usual cold symptons though and kind of dismissed the wheeze as possibly the work environment that i work in.
I am an electrician and at the time was working on an old 60's building in the centre of town which was getting stripped out so again i put the wheeze down to that,dust etc...
Throughout the summer everything seemed fine until i went for a swim in the sea which nearly claimed me as when i came to swim back to shore i was so out of breath that i was almost passing out!!!
Doubled up gasping for air it took a while to recover my breath.
Thought nothing of that and just put it down to "being unfit".
I used to enjoy rock climbing with my brother and children yet again half way up a small 10mt climb i would be weak and very out of breath,again i put this down to being unfit and scrambled away dening that anything was wrong.
Jumping forward to xmas this year it was when i went for a short hike with the local scout group that i relised that something was seriously wrong.
Scouts at the age of 11yrs old charging off up a moderate incline with me at the age of 34 struggling for air after literally 50 paces.Again bent in two gasping for air.
I did get to the top of the hill which was only 2 miles to the top but it was a very slow pace with lots of stopping and recovering.
After taking some advice from someone in the group who had just recovered from pneumonia i went to the doctors.
I saw the first doctor who agreed that my condition was not to do with being unfit but was due to an unknown condition at the time.
She listened to my lungs and tapped them several time,ruled out some possibilities and dismissed others.Iwas prescribed "antibiotics"as she suspected a chest infection.
The said Eyrytromycin tablets that she gave me at a dose of 500mg had given me very bad pains to the stomach almost within hours of taking them.
I checked the list of known side effects and sure enough stomach upset was there so i continued to take them as instructed.
After only a day and a half through the tablets the pain was coming in intense waves of very sharp pain to the stomach which was almost cramping up the stomach.I phoned the chemist who told me to stop taking them and to see my doctor at the next available time.That same night i was physically sick several times.
I was insructed to stop taking the tabs by the doctor who by now seemed to be puzzled.
I was refered to see the surgery nurse who gave me a simple lung function test.
After this i saw a second doctor who,when i entered her room said without haste that i had asthma just by listening to my breathing,a simple blow test was conducted via a blue tube and the resulting blow test was about 350,i was told that i should be able to get atleast 500.
500 What was never explained to me and i took her word for it as she prescribed me with the blue inhaler for asthma.
This was instant relief when i took the inhaler. There is a hill near me that i could once again climb up without having to stop half way up to try and catch my breath.
Great i thought,i can get a fix of inhaler and all is well again.WRONG!!!
The relief that i had from the inhaler slowly started to faid away after only a few weeks.
A brown inhaler was then issued to me which only made it worse as my lungs started to burn,this was soon got rid of aswell.
It was only then that i was referred to the practise chest expert whose name i will keep safe but straight away gave me a massive amount of reassurance.
She went through my history notes,explained to me what it could and could'nt be and came to a concluesion as to the most likely 5 possible conditions,asbestosis was mentioned,again through my job type and she also mentioned sarcoid from the start,the others she never mentioned as she was sure the first two were the most likely.I was immediataly put on the sick!!
Two weeks of that was enough thank you very much so i asked my GP if i could go back to work,yes came the reply but only light duties.
It has been only two months now that i have definitely known that i have got sarcoid through several hospital visits with the chest xrays and the ct scan which confirmed it by the so called specialist.
I say the so called specialist because after reading some of the articles on this forum i feel that i know more about the condition than he does.
My own GP was positively encouraging me to read up on the condition via the web and was interested to here what i had learnt.
All i got from the specialist was i'm the doctor let me do the diagnosing.
I am thinking of asking to see someone else as his attitude is appaling.
I ask questions and all he seems to say is yes yes its normal for that to be there on the xray when it clearly is'nt!
I asked the nurse taking my bloods as to how many other patience come through the hospital with the condition and she answered 6 includung myself.
I immediatly lost even more faith in the specialist as he and his colleagues don't seem to have many case histories to go on.
He just seems to be following the same routine as to "give the patiant steroids at 30mg and suck it and see if you get better".
Prednisolone is the one plus ranitidine for the stomach upset i believe,just go down to the chemist and pick them up he says without even consulting me if i want to take them or not.
A visit to my own GP again persuedes me to take them.
One thing that i have read in this forum though is that i should not be taking vitamin D supplements,my own GP suggested these plus a calcium supplement,can anyone advise me on this as the links that lead me to this forum says it is dangerous to take the extra vit D.
I have done a lot of reading through the sites and understand why i shoud'nt take them.
Sorry to waffle on and on but if this is a diary to myself and nothing else then it will have been helpful in that way.
Thank you for reading and look forward to reading other e-mails as i have been told yesterday that i will be on the steriods for atleast the next two years,if not for life.Thats the "specialist" talking.
 
 Re: * UK Sarcoidorians
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-21-04 17:08

Hi James,

Welcome to SarcInfo. Your specialist has a lot to learn about sarcoidosis. You do have a choice in the treatment you decide to bet your life on. I can tell you with certainty that if you take steroids you will be starting on a downward spiral of ever-decreasing quality of life and eventual death.

The Marshall Protocol is safe and effective. Ask your specialist to put you in contact with some patients he knows who have been cured by prednisolone. This is a trick question because there are none.

What we have learned and developed here is cutting edge medicine. The 200 plus sarcoidosis patients on the Marshall Protocol have demonstated a 95% response rate. That means that most are improving, some consider themselves in remission and all expect to fully recover eventually.

You will have to try to persuade one of your doctors to agree to help you. Tell him that Dr. Marshall welcomes phone calls from physicians and that there is a special forum for medical professionals only on marshallprotocol.com.

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links or starred threads on this site.

Meg
 
 Re: * UK Sarcoidorians
Author: James Anderson (---.lns.access.uk.tiscali.com)
Date:   07-22-04 13:14

Hello Meg.
Thanks for the reply.
The Marshall Protocol seems to be the way forward.
After reading for some 7 and a half hours last night about the people on the forum that are also suffering it is about time that the doctors who treat us listen to the people that best know their own bodies!!!
After reading some of the posts it is only fair that i acknowledge that they themselves are only fed the info that comes out of medical journals at the time. I also acknowledge that they are very busy people and that they have a million and one other things to diagnose,but if there is a radical altenative to the underlying causes to the disease that treats the bacteria causing the problem rather then masking it then why are so many reluctent to listen or practice the new medication? I can only imagine that over time this info will find its way to them,and with my/our help as an "active" not "expert" patient this will be speeded up so fewer people can get proper help faster.
I am going to make an appointment with my own GP for Monday 26th and present her with the paper work.
My own GP is fantastic,being a young and relatively new doctor i feel sure she will be willing to listen.
As for the specialist i will keep the appointment but ask to be taken off the steroids.
I can only imagine his response to this request but am going to insist on it.
I have also just tonight been put in touch with someone who has been suffering for some three years with the illness,i have a contact in the same boat that i can talk to now .
Thanks to the makers of the site,i forgot to mention that in my last post,it is the best site that i have found after months of searching.
Thanks to Trevor Marshall!
 
 Re: * UK Sarcoidorians
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-22-04 20:20

James,

The Internet's rapid dissemination of information will change the way that the medical establishment does business. No longer are patients kept in the dark waiting decades for the latest science to filter down to their doctors through the print journals. Patients are proactive and motivated to learn all about their disease and the best way to treat it. Hopefully, your doctor will take advantage of your new knowledge to being himself up to date. Expert patients and open-minded doctors make the best team.

Good luck,

Meg
 
 Re: * UK Sarcoidorians
Author: Alan Barker (193.34.231.---)
Date:   07-27-04 04:13

hi evoryone.

I'm just the mood for a brain dump.

I've been to see my consultant yesterday.
I been seeing him for about 10 months.
First I satred with the steroid treatment (5 months) and the MP treatment - now for 5 months ish).

I found the steroids initially made me better but after weaning off them the sarcoid was worse than before.

I've now been on the MP for 5 months and I think I'm ready for phase 2.
The problem really is that my shortness of breath has not gone away as a result, I'm pursueing the MP really from a position of no other real alternatives (unless you know different).

When I said to the consultant I was reluctant to restart steroid treatment he said 'No problem, in studies, they don't help in the long term anyway'.

It does beg the question of why start me on them in the first place !

I think he likes to experiment and I'm a willing Guinea pig. The only problem comes with having to pay for the olmetec (benicar)

there, I've got my wittering over with for now
 
 Re: * UK Sarcoidorians
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-27-04 07:08

Alan,

Doctors start patients on prednisone because it usually makes them feel better for awhile. This makes the patient happy and the doctor feel like he's doing some good. When the patient relapses, usually worse than before, the doctor blames the disease. But the prednisone is responsible because, by suppressing the immune system, it allowed the bacteria to multiply.

It may be too soon to see improvement on a CT scan. And if it doesn't appear better, your doctor may want to discontinue the MP. Try to postpone this test for another few months at least. It's not unusual for shortness of breath to continue for this long.

Photosensitivity is an indication of continued inflammation. Are you wearing NoIR sunglasses inside and outside? If not, you may be contributing to your slow progress on the MP.

I will send you the phase two information. Remember that phase two is to be started when you are no longer getting much of a Herx reaction from Benicar 40mg every six to eight hours and minocycline 100mg every other day. It's fine to stay at phase one if the Herx reaction is still significant. Also, please follow the slow ramping schedule for Zithromax carefully. It's tempting to speed things up but you may be sorry if you are hit with a nasty Herx that won't clear for a few weeks.

Take care,

Meg
 
 Re: * UK Sarcoidorians
Author: SteveUK (---.no-dns-yet.ntli.net)
Date:   07-27-04 08:12

Hi Everyone

I'm feeling extremely depressed at the moment, having spent the past year+ trying to persuade my GP and so called specialists to look at the Marshall Protocol. But so far with no luck what so ever. Most recently I was able to speak to a different doctor within the my local practice who through his research had found a specialist who is reported to have a special interest in Sarcoidosis, a major personal breakthrough I thought he contacted the specialist pointing out my personal interest in the MP and we awaited a reply. (It is interesting to note that I have asked my own doctor to do this several times over the past year and she did nothing).

Firstly I'd like to point out that my comments are in no way a character asassination and are intented to forewarn anyone of wasting their time expecting support of the MP from the the specialist mentioned below.

My appointment was last week at The Freeman Hospital in Newcastle where I saw Prof G Gibson having spent 4 hours enduring needless breathing tests, xrays, blood samples and for some unknown reason having my weight and height measured twice, all this due to my own hospital in Scarborough failing to pass my records on in advance of my appointment. It transpired that Prof Gibson is a great believer in steroids and the fact that Sarcoidosis burns itself out within 3 years. Yeah right! AND He's never heard of the Marshall Protocol and thinks the Vitamin D involvement is only a theory and has no proof plus he wouldn't take too much notice of anthing found on the internet. He did sympathise with the fatigue element however..........

Summing up, thank you very much the NHS you've excelled yourselves again I constantly build my hopes up and am constantly disillusioned, after travelling 200 miles at my expence and wasting another day visiting a specialist who seems to know less than I do and doesn't seem to be too concerned about the effects Sarcoidosis has on me and my family after I mentioned my problems working fulltime in my own business. I would consider claiming disability but the same doctors I see do not accept that this disease is bad enough. I despair with the lot of them when a safe alternative is available.

I know it is common practice to be secretive about doctors who will embrace Trevors theory but yet again I'd love to here from anyone who has a doctor who is prepared to try something new. I appreciate certain medications can be purchased (benicar) I still believe this should not be necessary.


thanks for listening

Steve
 
 Re: * UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-27-04 08:53

Steve,
As you can see from the links at the top of the page, the MP has been found extremely effective for treating chronic fatigue. As a result we now have a network of Doctors around the USA who are using the MP for Chronic Fatigue.

So a sarc patient could go to one of these doctors and have their fatigue sent packing. The sarc would also be treated by the MP, of course, killing two birds with one stone.

However, in the UK CFS is still regarded as a psychosomatic disease by a majority of physicians. Although there are physicians using the MP in CFS in the UK they are being harassed by their colleagues. So that option is not really open to you, either. The situation may change, and I will let you know if it does. I have started writing to BMJ to try and accelerate that process
http://bmj.bmjjournals.com/cgi/eletters/329/7457/112-b#68105

..Trevor..
 
 Re: * UK Sarcoidorians
Author: Diana (---.cache.pol.co.uk)
Date:   07-27-04 12:31

SteveUK,

You might try a slightly different approach. I do not see a sarcoid specialist at all. My GP prescribes the drugs and a consultant in the local hospital's department of General Medicine monitors me and my blood to check nothing too alarming is happening. I was recently able to provide an encouraging one-year report to them both, although still I have a long way to go. Perhaps your GP would agree to let you follow the MP with similar back-up.

Diana
 
 Re: * UK Sarcoidorians
Author: SteveUK (---.no-dns-yet.ntli.net)
Date:   07-27-04 17:01

Diana

I have been able to obtain both Minocycline & Azithromycine through my GP, however my GP rubbishes the MP but allowed me to take the 2 ARBs on the basis they couldn't do any harm I have further tests mainly for my eye involvement at the hospital these specialists insist on steroid only treatment and know nothing about the MP, although they only live 4 miles apart. Unfortunately I am not lucky to have an understanding GP or a comunicative team at my hospital. I am left to my own devices, resources and what little energy I may have left.

thanks anyway

Steve
 
 Re: * UK Sarcoidorians
Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date:   07-27-04 19:41

Steve,

There are a lot of us who have settled for a doctor who will order the tests and medications even if he/she doesn't have the time or inclination to study this new treatment plan. It's not ideal and hopefully, in the future, we will all have a willing and knowledgable doctor. I applaud your valiant efforts to forge ahead despite difficult circumstances.

Hang in there,

Meg
 
 Re: * UK Sarcoidorians
Author: Craig Strachan (---.server.ntli.net)
Date:   08-01-04 04:43

Hello Fellow UK Sarcoidorians

i visited my Consultant last friday and i told him about the information that i have found on this website, he is very sceptical and said that although the internet can be very good, it can also be very bad. long and short of the consultation was that he would not prescribe benicar or minocycline, instead he is sending me to the Royal Brunton(i think that is what it is called) in London to see two people(who's names i cannot remember) as apparently they are the top docs in the country, and if there is a trial for MP then they will know about it.

Just wondered if anyone had been there before?

Craig
 
 Re: * UK Sarcoidorians
Author: marilyn (---.server.ntli.net)
Date:   08-01-04 09:40

Steve and Craig:

Have you tried getting a referral to Dr Beynon at Royal Free Hospital in London. He is a rheumatologist treating sarcoid patients. He has agreed for me to do the MP but may not do so in every case without tests etc.

The pulmo there is very wary of low blood pressure side effects of the Benecar .

Worth a try......

Warm regards

Marilyn
 
 Re: * UK Sarcoidorians
Author: Tanya (---.proxy.aol.com)
Date:   08-12-04 14:20

Hi

My name is Tanya and I have just spent the best two hours of my life on this site! Thank you all so much, I can't begin to explain how much of a relief it is to find other people going through the same things I have and will no doubt face in the coming months.

I was reluctantly diagnosed with Sarcoidosis two weeks ago after the most harrowing three moths of my life. I went from a kickboxing, tennis mad, Disco dancing enthuisatic widowed single Mum of 30 who loved nothing better than to play football and Rugby with my twelve year old son in our local park to someone that could not even manage to put two feet in front of the other! I lost 3 stone in as many months and was covered in more lumps than a bowl of cold custard! I was told that I may have cancer, TB, Hodgkins, Hutchinson syndrome you name it. It was a crazy scary time of A&E, Scans, X-rays and a Biopsy with confused looking Registrars using me as a pin cushion and taking what seemed like pints of my much needed blood! However appointment waiting times were swift, consultations lengthy, I was afforded time and patience from my G.P who listened intently and sympathetically to all of my sympthoms and worries until last week when it all came to a shuddering halt. "Thank god it's only Sarcoid" came the response from my G.P who once held my hand and told me "We'll do everything to help". He saw my face then changed it to "well you know what I mean"! Then I got the speech about Steroids and how all the Sarcoid patients he knew of took them! Funny that, when I asked him about ALL of these patients he suddenly developed the same memory loss as the deflated weary patient sitting opposite him! It's sad really he means well and even listened to me for a minute without interupting when I started stuttering details of MP. He is actually a good G.P and cares for my son who has Agammaglobulinanemia (a rare genetic X-linked immune deficency) beautifully but he claims that I have to try to "sell" Mp to my Consultant (god help me!) as he cannot prescribe treatment for Sarcoidosis.

Oh well. I remain very nervous but optimistic thanks to all your posts. You are all so amazing and strong and it has inspired me. I would love to get intouch with any other Sarc or Auto immune patients (my mother has Fibro so I guess there genetic!) in London/Middlesex/Surrey who may be having sucess with MP or are contemplating (like me) approaching a consultant. I would also like to delve more into the genetic link (if there is one) of Auto imunne diseases in families or infact any immune deficencies/diseases as they seem to be rampant in my family. So please, please contact me. It's great to know YOUR NOT ALONE

Tanya

Tanya, Please check your inbox. Names are waiting for you.

Pippit
 
 Re: * UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-12-04 16:39

Tanya,
It sounds as though your Doctor has been reading books which tell him Sarcoidosis goes away on its own.

You really need to print out the information at "NIH ACCESS Study Shows That Sarcoidosis Does Not Go Away" so that Doc can get better information as to what to expect if he doesn't treat this disease with the MP.

The same huge study also showed that Prednisone was ineffective as a treatment. I suspect Doc thinks that prednisone is such a dangerous drug that it just HAS to work...?

..Trevor..
 
 Re: * UK Sarcoidorians
Author: Simone (217.205.244.---)
Date:   08-14-04 17:51

Hi all,

I haven't posted here before but have read lots of the messages with interest.

I am writing about my boyfriend who has recently been told he has sarcoidosis. He had been ill for two years (gp originally presumed pneumonia) and x-rays showed shadows on his lungs. A lung biopsy and scans in May this year showed that he had fibrosis and cavities - lung function is around 90%. The biopsy was also tested for TB, but the results are still not back.

The doctor thinks he definitely has sarcoid, but thought it might have been triggered by TB. Hence he has been taking TB antibiotics for 3 months (in case it was TB), and started steroids 1 month ago. He has seen two sarcoidosis specialists in London (at the Whittington hospital and one in Chelsea, I think).

He is feeling very despondent, largely owing to the lack of prognosis for someone with chronic sarcoidosis. It can be a sensitive issue between us (it upsets him to talk about it), hence the reason I am doing my own research. I feel very impotent and want to help him - but I have to do this in a very sensitive way. We both know that there are bad side effects with steroids etc and he doesn't want to take them - but at the moment they are his main hope of feeling better, so I hope you all understand that hearing any further negative information about steroids would make him feel worse.

So - my question (finally!) is - does anyone know a consultant in London who really knows about sarcoidosis, or a clinic? And is there a consultant who has an interest in the MP?

It is important for me to find someone who is already favourable towards or at least has knowledge of the protocol - my boyfriend doesn't like talking about his condition and doesn't seek out info on the Internet. If I were to go along and see his current consultant with him and show them the MP material, I think it was cause him distress. (Although I suppose I could try if worst came to worst)

Any help you can give would be really appreciated.

Many thanks

Simone
 
 Re: * UK Sarcoidorians
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-14-04 19:25

Simone,

Welcome to SarcInfo. I'm sorry your boyfriend is having such a rough time of it. I understand that you need to bring up this subject with tact. But perhaps all he needs to know is that there IS an alternative to prednisone. It is imperative that you help him understand that his current treatment will allow him to get worse.

I'm sure you've read the posts from others in the UK and know that it isn't easy finding a doctor there who will verve from the norm. But it can be done. I expect you'll get some good advice from them.

Good luck,

Meg
 
 Re: * UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   08-16-04 06:04

Meg, Trevor and all,

I am still trying to get the protocol prescribed. I have asked my GP to look at your papers and he has agreed. I have printed some out, but I don't want to put him off by sending too many. He did say he couldn't perscribe the arbs for sarcoidosis on the NHS as it isn't an approved treatment, I would have to get a private prescription. The abx could be perscribed under the cover of treating another symptom, but not for sarcoidosis itself.

NHS-related problems also apply to referrals to specialists or other GPs. A rheumatoid specialist is supposed permitted to treat/prescribe for a chest patient under the NHS, and might chose not to see someone who is not an arthritis sufferer, even privately. Because GPs are funded by local health authorities, a GP in another area cannot treat you. The other matter my GP raised was that, if something went wrong or someone reported his actions, he would be outside the terms of his NHS contract of employment and answerable to the general medical council (for both private or public treatment). I don't know if the US is as rigid as this - we seem to combine Kafa-esque bureaucracy with the fear to litigation to achieve a stultifying, progress resistant 'no-can-do' medical culture.

Di
 
 Re: * UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   08-16-04 06:06

Sorry, big mistake in the last posting it should have read:

A rheumatoid specialist is NOT supposed permitted to treat/prescribe for a chest patient under the NHS...

Please blame the sarc, rather than my chronic typing :-(

Di
 
 Re: * UK Sarcoidorians
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-16-04 07:03

Hi Di,

I'm sorry that your healthcare system limits your choices. If your doctor is willing to prescribe Benicar and minocycline privately, that is cause for celebration. I hope that paying for the meds will not be an undue hardship for you. Reassure your doctor that there are a few other doctors in the UK prescribing the Marshall Protocol. He may want to join marshallprotocol.com and access the forum for medical professionals there. And he can always email Trevor to clarify and questions.

We are working on a 'consent to treatment' form that your doctor may want you to sign to release him of responsibility.

Good luck,

Meg
 
 Re: * UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   08-16-04 14:39

Di (and Meg),

I don't pretend to understand the intricacies of the NHS, but my GP, who is prescribing the MP for me, is in a fund-holding practice - not all are. He decides how to spend his funds - I don't have to pay, except for the usual prescription charges.

Also, although when I first presented him with the MP papers he mentioned how his insurance wouldn't cover him if anything went wrong, once he saw the mino working and felt Trevor might be on to something, he didn't mention insurance again. He said (about ARBs) that a number of medications that were developed for one thing had proved useful for something completely different, and he was prepared to risk it if I was.

So perhaps you need to be looking for a sympathetic GP in a fund-holding practice.

Julia
 
 Re: * UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   08-19-04 09:38

Julia,

That sounds hopeful - I have posted a selection of papers to my very nice and sympathetic GP. I don't know if he is a fund holder but am pretty sure that he will help me if he can do so without putting himself in a difficult position. Are you being perscribed the MP for pulmonary sarcoidosis? That seem to be the sticking point for my GP. The last time I went to see him he was immobile with bad RA in his knee and talking about perscribing antibiotics for himself, so he is aware of their use in other areas and has given me minocin in the past. My problem is that I had a really severe reaction to it on its own and I'm hoping taking ARBs would prevent that.

Di
 
 Re: * UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   08-19-04 12:58

Di,

My sarc didn't show up on a lung scan, despite a persistent minor cough. It was first found by a blood test after eye treatment, then I developed a right catalogue of symptoms, the worst being muscular and joint pains. And fatigue of course.

When you took mino in the past you probably took a big dose every day. On the MP it's every other day and low-dosage. So don't be scared of a reaction this time, even if you can't get Olmetec. But I hope you can persuade your doctor, because there's a limit to the effectiveness of mino alone - after three months I wasn't getting any more herx, but once I got the Olmetec I started herxing again.

All the best,
Julia
 
 Re: * UK Sarcoidorians
Author: Pippit (---.asm.bellsouth.net)
Date:   08-19-04 21:47

Julia,

Would your doctor give permission to be put on our list? There is a great demand for doctors in the UK using the MP and it could bring him new business.

Let me know if he's willing and if so I'll e-mail you and get his name and contact information.

Pippit
 
 Re: * UK Sarcoidorians
Author: John Shackcloth (212.162.234.---)
Date:   08-20-04 02:02

Hi UK People,

Radio 4's 'Case notes' program, scheduled for Tuesday 24th August at
21.00pm, to be repeated on Wednesday 25th at 16.30pm, will be
looking at the Autoimmune diseases - Lupus, Ankylosing Spondylitis etc
and new drugs for Rheumatoid Arthritis.

Who wants to have a bet with me as to whether either the AP or MP will get a mention? ( no, didn't think so... )

It would though, be a terrific opportunity to raise the awareness and the eventual acceptance in the UK, of the various Antibiotic protocols...

I've emailed the program to see if there is any chance of discussing
the various Antibiotic Protocols on air, but as I write this, have
not as yet had a response. Still early days though.

It may well be too late to do much with this particular program, but it occurs to me that if enough people were to contact the program makers, extolling the benefits of AP and the MP, Then perhaps their interest may be stimulated enough to consider a further program, dedicated to the possibilities of Antibiotic treatment.

So-oo, If anyone else would like to add their two penneth, the contact link
to the program is...

http://www.bbc.co.uk/radio4/science/contact_casenotes.shtml

Good luck!
John. ( Abtuk )
 
 Re: * UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   08-20-04 03:54

Julia,

The 'bad' reaction I got to Mino was that I would wake up in the early hours, having taken the abx in the morning, with the feeling I couldn't breathe or swallow and have a very nasty hour or so. I used Olbas oil in hot water as a form of nebuliser, but the reaction continued and was so unpleasant that I stopped the mino and the symptoms subsided. I can get a minor swallowing problem if I'm careless about what I eat or how much sun I get, but this was different. I'm not sure this was just herx - I'd taken the mino without any noticeable reaction for six months before I started gettting this problem. I stopped for a while and then tried again with a lower dose on alternate days, but had the same reaction.

As a result, I'm nervous about taking mino on its own.

Di
 
 Re: * UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   08-20-04 11:07

Pippit,

I'll certainly ask him, but I doubt if he needs more patients - his practice is popular enough!

Over here a doctor gets paid by the NHS so much per patient (with a higher rate for the number of patients with special needs, e.g. the elderly.) Only a group practice with over 5000 patients can be a fund-holding practice.

As he's near Belfast it would really only help the Northern Ireland folk anyway.

Julia
 
 Re: * UK Sarcoidorians
Author: Pippit (---.asm.bellsouth.net)
Date:   08-20-04 22:43

Julia,

Let me know what he says. I think it would be useful even if he is in Northern Ireland. From what I understand people there are having a tough time.

Pippit
 
 Re: * UK Sarcoidorians
Author: pheard (---.access.uk.tiscali.com)
Date:   08-30-04 10:14

I have had neurosarcoid for over 10 years and I ame still on steroids and methotrexate, the illness has also caused panhypopituritum.,and also diplopia. Any one else out there with similar symptoms, would like to hear from you.
 
 Re: * UK Sarcoidorians
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-30-04 18:13

pheard,

Welcome to SarcInfo. I'm sorry you're still ill after so many years of treament with the standard medications for sarcoidosis. But that's not surprising since those drugs haven't cured anyone yet.

The patients on the Marshall Protocol are getting better without dangerous medications. I have neurosarcoidosis that is responding well to this novel treatment plan. All symptoms related to sarcoidosis will resolve with the MP.

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links, starred threads or by doing a site search.

Meg
 
 Re: * UK Sarcoidorians
Author: Karen (---.server.ntli.net)
Date:   09-04-04 02:20

Hello to everyone,
I've only just discovered this website, but have spent the last 2 days (and most of the night due to early waking!) reading through a lot of the info contained in it.

Firstly, I would like to say that it seems to be the light at the end of a very long tunnel for me.

I was diagnosed with Sarcoidosis more than 10 years ago following a chest X Ray and Bronchoscopy, but only after having "weird" and very diverse symptoms for a very long time (probably most of my life looking back on it!)

I was given a course of Prednisolone, (I can't remember how long for, but think it was just less than 1 year) starting with 20mg per day (I think!) and reducing gradually as my lung function improved.

The Consultant I was under at the time (he has since retired I believe) said he would give me as little as he thought he could get away with for as short a time as possible because he said they had bad side effects, and as I was already overweight he didn't want me to put on even more weight!

When the Steroids were finished, I was more or less sent away and told I was "cured". There was a small chance the Sarcoid could return, but it probably wouldn't.

Over the years, I have been to my GP with lots and lots of illnesses and have often asked if it could be the Sarcoidosis returning, but this has been dismissed.

The pain in my hip/back/leg, resulting in mobility problems, led me to having a hip replacement over 3 years ago, at the age of 43, even though the Orthopaedic Consultant repeatedly said he couldn't see why I was suffering so much pain!

Following the operation, he told me that during the op they found a hole in the hip socket that needed a bone graft. I asked him if this was what had caused all the pain, but he was non committal!

Following the op, at my check ups, I told him I was still getting pain and was having a problem lifting my leg from the hip, even though I was still doing all the exercises/walking etc, and had also managed to lose weight (about 5 stone) following the op.

He appeared puzzled, and remains puzzled, as do all the others I have seen since then ie: another Orthopaedic Consultant at a different hospital, several physiotherapists, and also an anaesthetist who runs the pain management clinic!
Also during this time I had to have an emergency hysterectomy due to a twisted ovarian "dermoid" cyst, which was excruciatingly painful! which resulted in me having to have further surgery the following year because of "granulation tissue" forming.

I have gone on to suffer from bladder and bowel problems since the hysterectomy, to which there seems to be no answer!
I have swelling legs which seem to fill up with water for no good reason, and have recently been having severe joint pains (again), lethargy, early waking, total exhaustion, blurred vision, migraines, pins and needles, numbness etc, to name but a few!

I think everyone I know, including my GP and my friends, think I am a hypochondriac!
I have thought so too at times, along with thinking I am going insane!

My GP has attributed most of my symptoms to the stress of losing my job, and having to fight for my occupational pension as I had no diagnosis!

Despite going back and forward to my GP, and her referring me to various different Consultants, no one has put any of this down to the Sarcoidosis, as I have been deemed to be "cured."

I have at various times been to my GP with various theories about what is wrong with me, which include "Lupus" (whereupon I was referred to the Rheumatologist!) and this was dismissed. "Behcets", "Rheumatoid Arthritis",
which incidentally my mother suffered from, although I am beginning to wonder if she did, as she seemed to have all the symptoms I have recently had, but was also told she had interstitial lung disease which required a lung transplant, although she never made it to this stage, because she suddenly died of a massive brain haemmhorage (in Australia, where she lived) nearly 3 years ago, at the age of 64!

Anyway, up until now, I have never been able to find out any information on Sarcoidosis, and most people I have spoken to have never heard of it (including Doctors!)

This website is a revolution to me, and has explained a lot!
I will continue to read it until I can go to my GP on Monday, armed with yet another lot of info, but hopefully more relevant to her as I have already been diagnosed.

On reading some of your postings on this UK link, I am surprised no-one has thought to bring this illness and the Marshall Protocol to the attention of Dr Hilary Jones on GMTV to try to raise awareness in this country!
Most people in this country watch the TV, (whilst the majority do not have access to a computer or the internet) and this is a national programme.

Maybe we could have a "National Sarcoidosis Awareness week" and bring it to the attention of the media in this way. This may provoke discussion amongst the medical profession.
I hope this has been of some use to you. I am aware I have rambled on a bit, but this has enabled me to get some things "out of my head".

Hope for some response to this, bye for now, Karen.

PS. The only symptom I don't seem to have had is the weight loss, and this is the one thing I could do with!
 
 Re: * UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   09-04-04 08:48

Hi Karen,

I think the weight loss is a myth!! I could do with it too.

Have you heard of John Shackcloth's UK support and pressure group? It's at
http://health.groups.yahoo.com/group/abtuk

It's for anyone interested in having antibiotic therapy more widely recognised in the UK for treating immune diseases, sarcoid included.

You'll find links there to the transcript of a recent BBC radio programme chaired by Dr Mark Porter - the *other* hunky TV doctor! - and the address for sending responses to the BBC. Do join us in sending them an email - who knows what might come of it. If enough of us badger them (nicely!) -

***(UK SARCINFOLK, ARE YOU ALL LISTENING?)***

- perhaps they'll do an investigation into what we're all yapping about.

Welcome to UK Sarcinfo.

Julia in Belfast
 
 Re: * UK Sarcoidorians
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   09-04-04 09:22

Hi Karen,

Welcome to SarcInfo. I'm sorry that you've been so ill for so long and that none of your doctors can see that it is due to sarcoidosis. Your lung inflammation may have resolved but the systemic inflammation has been devastating. One of my pet peeves is doctors who can't admit that they simply don't know the answer and instead blame the patient by attributing their symptoms to stress. You are definitely not a hypochondriac.

It sounds like the surgeon who did your hip replacement recognized that the damage may have been caused by the prednisolone that you took. Joint pains are also common to sarcoidosis inflammation though.

Many if not all of your symptoms, including bladder/bowel issues, can be resolved with the Marshall Protocol. The trick will be to find a doctor in the UK who is supportive. I'm sure you will find John's website helpful in that regard.

Good luck,

Meg
 
 Re: * UK Sarcoidorians
Author: Karen (---.server.ntli.net)
Date:   09-04-04 10:19

To Julia & Meg,

Thanks for responding.

I had read earlier about John Shackcloth and have already e-mailed him re: info, but I wasn't aware he already had a support group.
Thanks for the link, I will look at that later.
I'd better take a break for my tea now, cos I've been on here most of the day! I'm finding it's compulsive reading at the moment!
Look forward to more correspondence and joining in the fight for recognition!!!!

Karen.
 
 Re: * UK Sarcoidorians
Author: John Shackcloth ( ABTUK ) (---.in-addr.btopenworld.com)
Date:   09-04-04 13:23

Hi all UK people, YOUR VOICE IS NEEDED!!

The full text transcript of the Radio 4 Casenotes program -
AUTOIMMUNE DISEASES is now available at this address...

http://www.bbc.co.uk/radio4/science/casenotes_20040824.shtml

If we UK residents are really serious in our belief that Antibiotics
should be more widely recognised and available as a treatment for
the Autoimmune diseases in the UK both for the AP and the MP, and want to do what we can to
promote it, then this is a wonderful opportunity ( and they don't
come often! ) to let the program makers know exactly why that should
be the case.

The program makers can be contacted here...

http://www.bbc.co.uk/radio4/science/contact_casenotes.shtml

I don't want to put words in anyones mouth as I'm sure you'll have
your own strong views on the programs content. But come on everyone,
lets get active!!!

Pretty Please????

John.
 
 Re: * UK Sarcoidorians
Author: Karen (---.server.ntli.net)
Date:   09-05-04 01:26

Hi all,

I'd just like to know if all (or any!) the UK Sarcoidorians are being monitored on a regular basis by anyone in the NHS? If so, where? How do you manage to get treatment? I just keep being told it went away after I took the Prednisolone (more than 10 years ago) and that none of the symptoms I have had since then are down to the Sarcoid (even though, from what I've read on sarcinfo I have been displaying almost ALL of the signs of systemic sarcoid)
I'm feeling quite bad at the moment, so would appreciate any feedback or info.

Thanks, Karen.
 
 Re: * UK Sarcoidorians
Author: Lottie (---.proxy.aol.com)
Date:   09-05-04 02:02

Karen,

Let me add to what Meg said. Don't let anyone tell you that Sarcoidosis goes away on it's own!! It doesn't. And, as she told you Prednisone is not effective in getting rid of it, it allows it to progress throughout your body.

Wish you the best.

Lottie
 
 Re: * UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   09-05-04 14:47

Karen

I'm supposed to be under the care of my endocrinologist, who is the nearest thing we have to a sarc expert in N Ireland. But he was too cautious to agree to the MP, as he was wary of the long-term side-effects of high-dose Olmetec. It was my GP who tried me on minocycline alone first, and then when he saw the dramatic improvement, agreed to try the Olmetec. He's monitoring me, but so is the endocrinologist. And it's all on the NHS. I just pay prescription charges.

Many of us on both sides of the Atlantic have found our GPs to be more open-minded about the MP than the specialists. I hope you can find someone soon. It will be well worth persisting.

Julia
 
 Re: * UK Sarcoidorians
Author: Karen (---.server.ntli.net)
Date:   09-05-04 14:57

Lottie & Meg,

Thanks for your info.
I have just written a letter to the Chief Executive of my local NHS Trust (I was corresponding with him re: complaints about my treatment anyway) and I have told him I want to be seen URGENTLY!
I am going to hand deliver it tomorrow.
Will keep you all informed if /when I get a reply.
I've told him I'm not going to go away!!!!

Karen.
 
 Re: * UK Sarcoidorians
Author: John Shackcloth (212.162.234.---)
Date:   09-06-04 01:11

Hi Karen,

Could I ask you if you would keep Abtuk members informed also? I'm sure your pro active efforts will be of interest and much welcomed by the membership there.

Cheers,
John.
 
 Re: * UK Sarcoidorians
Author: Karen (---.server.ntli.net)
Date:   09-07-04 12:50

John,

Sorry but I've temporarily forgotten my Yahoo password, but will keep Abtuk up to date when I manage to remember it!


Karen.
 
 Re: * UK Sarcoidorians
Author: Diana (---.cache.pol.co.uk)
Date:   09-13-04 05:31

I have just noticed that the BBC's Horizon programme on Thursday 16th September 2004, at 9pm, is called "The Truth about Vitamins". Apparently the slant is that people may inadvertently be putting themselves at risk of the very ailments they are hoping to avoid.

I have just typed an email to the production team, the first time I have ever done that BEFORE a programme is broadcast! I find it difficult to believe that they know what we all know about vitamin D, but maybe I will be wrong. Anyway, I shall do my best to watch it, and there may be more to say afterwards. I think it will also go out on BBC World at some stage, but I haven't manage to find out when.

Diana
 
 Re: * UK Sarcoidorians
Author: marilyn (---.server.ntli.net)
Date:   09-13-04 07:54

Karen,

The Royal Free Hospital in LOndon has a sarcoid clinic to which you can be referred...DR Hugh Beynon is the Rheumatologist I see but often it is a pulmo or a training doctor. Dr Beynon agreed for me and some others to try the MP but each case is different and he may want to do tests first. You certainly could ask to see him if you can get to London.

I was diagnosed in 1985 , did not need or take prednisone and have nonetheless had regular follow-up appointments at the hospital amd really feel free to ask to come in if I feel it necessary.

Warm regards,

Marilyn
 
 Re: * UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   09-14-04 16:54

Pippit

My GP who is prescribing the MP for me is prepared to let me share his contact details. However, the way the NHS works, he can only take patients who live within a certain radius of his practice - it's about five miles I think. Anyone moving into the area and wanting to be put on his list would be interviewed, and his willingness to try the MP with a new patient would depend on their individual circumstances. My case was his first experience of antibiotic therapy for sarc, and while he is intrigued and encouraged by my progress, he would still be very cautious about prescribing for anyone else. (I admire his professional approach.)

He did say today that he considers the MP safe enough, and thinks I don't need to be worried about long-term effects.

If you email me I'll send you his details, if you still think it's worth it.

Julia
 
 for simone who posted in August
Author: Debra (---.freeuk.com)
Date:   09-20-04 07:42

Hi Simone, I have only just read this strain on Sarcinfo.
One of the best chest physicians that will really listen is Heather Milburn at Guys Hospital, Sarcoid clinic is Wed a.m. See if you can get your boyfriends' GP to refer you.

I was treated by her for a long time and she kept me well, albeit before the MP was really known about.

I hve been transferred to Royal Brompton Hosp. who are very sniffy about MP and refuse to even try it, but are doing lots of research themselves.

Hope you find a good physician, I trusted Heather for about 5 - 6 yrs.
 
 Re: * UK Sarcoidorians
Author: James Anderson (---.24.156.fdial.global.net.uk)
Date:   09-20-04 13:32

Hello to all fellow suffers.

Hello to the admin who dispite all the posts still seem to give the time to help as if they were the first to responed to. Thank you all.

Meg,i have been dicouraged from coming of the pred by my own GP as she still thinks that it is the best thing for the treatment.
I have reluctantly,dispite what i siad in my last post gone along with this as i have a massive amount of trust in her.
She explained that she had read through the forum information and could only agree with most of it,but could'nt justify prescribing a long term course of antibiotics as this could lead to more problems in the future should i get a serious infection.
She told me to stop taking the vit D supplements that i was on but to continue to take calcium via milk,at least one pint a day. ( For my bones )
After stopping the vit D my body tempurature started to regulate itself correctly once again(constantly hot and burning up) and i stop sweating from the armpits which at the best of times was embarrassing as at times it was out of control!
I have never had this problem before.Has anyone else had these symptoms?
I did explain that the specialist that i am seeing was fairly useless and she has arranged that i have a second opinion at a different hospital.
This appointment is at the end of Nov.

The specialist that i am seeing at the moment has arranged for an ACE test around the end of November too but am i right in saying that the results from this test whilst on the Pred will be incorrect?
If so whats the point?

I will go armed with the relivent paper work to the new consultant and present it to him and see what happens after this,but like i say this is'nt untill the end of Nov.

I am at the moment getting stinging pains within my chest which i have had for a few months now,these i control with soluble paracetamal.
Again does anyone else get these pains.
Cramps in the hands,little toe and the neck are commen too yet not a painful cramp more like a strong muscle spasm which will curl the fingers in.

I too also feel fairly tired most of the time with ups and downs.

Sorry Meg for not being stronger in refusing the dreaded Pred.
Thanks again for reading and helping.

Yours Jim.
 
 Re: * UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   09-20-04 15:05

Hi Jim,

You said your doctor "couldn't justify prescribing a long term course of antibiotics as this could lead to more problems in the future should I get a serious infection."

Jim, you've already got a serious infection. Almost certainly the most serious you'll ever have. You may have good reason to trust your GP, but she's not understanding your illness, if she's talking about you getting a serious infection in the future. You're ill NOW.

You could be well on the way to health with a few months of the same antibiotic that she probably wouldn't hesitate to give to a youngster with acne. Then when she saw how well this treatment works, she might be willing to go the whole hog and give you the Olmetec/Benicar. That's what happened with my doc - when he saw the dramatic results of minocycline and realised that Trevor was on to something, he was prepared to try the whole thing.

It sounds as if your doc doesn't realise how you're suffering. All the symptoms you mention are common in sarcoidosis. They go away gradually with this treatment.

All the best from stormy Belfast.

Julia
 
 Re: * UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   09-20-04 15:49

Today after weeks of trying, I got through to someone high up in the Veterinary Science division of our N Ireland Department of Agriculture, and asked whether animals were injected with Vit D prior to slaughter as they are in some countries. She had never heard of such a thing, and was confident it wasn't happening. So, folks, enjoy Ulster beef and pork!

Julia
 
 Re: * UK Sarcoidorians
Author: Lottie (---.proxy.aol.com)
Date:   09-20-04 19:15

Jim

You’re doctor has placed you in a difficult position. You might ask her what Prednisone is doing for you. It is immunosuppressant, and so it prevents the immune system from working properly to disease. In doing so, it makes you more prone to a major infection, than if you weren’t taking it. And, more prone to a major infection than you would be if you were on the low doses of antibiotics that are part of the Marshall Protocol.

I was diagnosed in 1999 with Sarcoidosis, and was on Prednisone until after I found the SarcInfo site, and have recently weaned off of it. I can tell you that I got worse while on Prednisone. I have Echocardiograms (echograms of my heart) that show that my heart showed improvement after about two years on Prednisone, and about two and a half years later, my symptoms began to return, and the problems that I had when I was diagnosed, had returned and are worse… while I was still on Prednisone.

Julia is correct that you already have a serious infection, and that Minocycline is prescribed quite often for teenagers with acne, at much larger, and daily, doses than on the Marshall Protocol. Remember that this infection can be in EVERY part of your body, and is causing damage along the way.

The sweating you describe is common with Sarcoidosis. Mine has lessened, but I wake up sweating, and I can become drenched with sweat while everyone else is fine.

Make sure that the milk you are drinking isn’t supplemented with vitamin D. A pint of milk here in the U.S. would give you about 200 iu’s of D, half the "recommended" daily allowance.

The ACE test would not be accurate while you’re on Prednisone. It’s a test they’re familiar with, that’s probably the only point to it. Even though I had a biopsy proven diagnosis of Sarcoidosis, my ACE was "normal", before I went on Prednisone.

The D metabolites would give you a much clearer picture of inflammation going on, even while on Prednisone. It may not show as much inflammation as it would without Prednisone, but Trevor can still evaluate it.

I have chest pain, and electrical like "shocks" that go through my body, as well as generalized muscle and joint pain. I have also had painful cramps in my legs, and the not so painful ones that you describe. I’ve often had my fingers start to curl "on their own". (it’s really weird! )That’s not at all unusual with Sarcoidosis.

Don’t be sorry about the Prednisone issue, it only affects Meg and the rest of us because we realize that you are the one who will have the problems with it. Not only the side effects that you can see here The effects of Prednisone with photos, but because it allows the bacteria to multiply in your body.

If your doctor can agree with most of it, why is it that the only part she agrees with is reducing your vitamin D? (which has already given you some improvement) That doesn’t make a lot of sense. It can be hard to challenge a doctor that you have developed a trust in, and even harder to change from one you trust, but your life is at stake.

I hope that the doctor you are seeing in two weeks is more open to change.

I wish the best for you.

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: for simone who posted in August
Author: Meg (---.188.248.238.euc.wi.charter.com)
Date:   09-20-04 19:16

Jim,

Julia's advise is right on target. Doctors are not infallible and it is okay to disagree with one. If you cannot persuade your current doctor that prednisone is far more likely to do you harm than minocycline and Benicar, then you must find another doctor if you want to get well.

Retesting the ACE level will accomplish nothing if it doesn't precipitate treatment with the Marshall Protocol. I believe that your GP is pacifying you by sending you to a specialist. You will likely get the same advice to continue with prednisone and your suffering.

Excessive sweating is so common that is is mentioned in many Sarcinfo threads. Here is a link to those topics.

I'm glad that stopping Vitamin D supplementation has helped you feel a bit better. That should be your clue that the MP is the right direction to take. I hope that the milk your doctor encouraged you to drink is not fortified with Vitamin D. Have you had your D-metabolites tested? A high 1,25-D will be counteracting any measures you take to help your bones.

Stinging chest pains, cramps and fatigue are all common symptoms of sarcoidosis and indicate that your current treatment is ineffective. I know that it can take a lot of courage to stand up to a doctor but I hope you will find the resources to follow your convictions. Let me know if you'd like a list of doctors who might be more supportive. Two months is a long time to wait for an appointment with a specialist who may be another deadend (no pun intended).

Best,

Meg
 
 Re: * UK Sarcoidorians
Author: Marypat (---.proxy.aol.com)
Date:   09-21-04 04:28

Jim,

One of our dogs has histocytosis. The Vet doesn't want her on prednisone longer than a month because of the awful effects of pred long term. That should tell us something!

Marypat

PS After limping through life for 27 years after Dx of sarcoidosis I found Dr. Marshall's site. It was like coming home. All the symptoms Drs. had tried to convince me were 'in my head' or were ignored were actually part of this dreadful disease.

After being on the full protocol for only a little over a year I am actually able to enjoy life again. [took me six months (and I meticulously cut Vit. D from my diet, wore NoIr glasses and stayed out of the sunduring this time - diminishing many of the symoptoms I'd struggled with for years)and many Drs. to find one that wasn't too full of themselves to actually read the info from this site]

Don't give up looking for a Dr. that is actually interested in you as a person!

Thanks again to all the hard workers on this site!
 
 Re: * UK Sarcoidorians
Author: James Anderson (---.25.7.fdial.global.net.uk)
Date:   09-21-04 14:44

Thank you all for the responses.
I did'nt for one minute think that i would get a response like this.

Meg,could you mail me the list of doctors please.

Sat here now i still feel like a bit of a fraud as i feel that i could run a marathon if only my lungs could keep up with me!!!

I know that i am not.

Thank you all for the advice,i will try and take some action armed with this advice.
The comments about the acne and the treatment for it are interesting.

Yours Jim.
 
 Re: * UK Sarcoidorians
Author: SteveUK (---.no-dns-yet.ntli.net)
Date:   09-21-04 16:10

Anyone

I have now seen 3 separate doctors in my area various people with a so called "special interest" in Sarcoidosis and they all think a) that Sarcoidosis goes away on it's own and the only way to treat it is with steroids.

If anyone in the UK has a doctor that will prescribe the MP I'd appreciate the information more than you can imagine.

Cheers

Steve
 
 Re: * UK Sarcoidorians
Author: Meg (---.188.248.238.euc.wi.charter.com)
Date:   09-21-04 22:02

James,

I'm glad that the responses you got convinced you that the standard treatment for sarcoidosis, steroids, is a recipe for failure.

Unfortunately you live in a part of the world where the healthcare system greatly hampers the creativity of its doctors. I'll send you the list of doctors we have but there are only two in England and they are only possible candidates based on their experience with using antibiotics to treat RA.

There are patients in the UK on the MP but their doctors are not yet ready to take referrals and risk censorship. If you read this topic thread and also the archived UK Sarcoidorians thread (click at the top of this thread), you may find suggestions to finding a doctor in your area.

But you will probably need to educate yourself first and then knock on doctor doors until you find one who has the courage and time to try something new. There are excellent suggestions on how to approach a doctor in this marshallprotocol.com thread.

Best of luck to you,

Meg
 
 Re: * UK Sarcoidorians
Author: James Anderson (---.30.61.fdial.global.net.uk)
Date:   09-22-04 11:45

Thanks Meg.

I recieved your e-mail.
Marypat,your comments about your dogs treatment speak volumes!

Yours James.
 
 Re: * UK Sarcoidorians
Author: Helen (---.cache.pol.co.uk)
Date:   09-24-04 14:49

Can anyone tell me the implications of finding sarcoid in 2 Lymph nodes that were taken for biopsy at the same time as a breast cancer was removed by wide local excision I am fortunate that I have clear margins on the cancer and no cancer in the Lymph nodes so I don't have to have any more surgery I will have 5 weeks of Radiotherapy starting in about 3 weeks time when the wounds have healed.
I was diagnosed with cardiac sarcoid in 1987 I had Prednisolone for 2 years and pacemaker fitted.
I will be very grateful if you have any answers.
 
 Re: * UK Sarcoidorians
Author: Lottie (---.proxy.aol.com)
Date:   09-24-04 21:24

Helen,

I am pleased that your surgery for cancer was successful.

Sarcoidosis, is a systemic disease, and can attack any part of the body. It is most known for causing lung problems, but as you already know, it does appear in other organs.

It does not go away on it's own, and you have reached the best place to be for a Sarcoid patient. The Marshall Protocol will help you acheive remission. Please read all the information at the top for patients and physicians, and the posts especially in the starred *** threads. You should have your D Metabolites measured, and you will probably be educating your doctor about the MP.

You can start on your own by avoiding ALL sources of Vitamin D, from food and the sun. Please check the labels of all foods and supplements, and do not eat anything with Vitamin D added. Also, avoid any food that it naturally occurs in, such as eggs, fish, and fish oils.

Also, cover up COMPLETELY when going out in the sun. Long pants, long sleeves, hat, scarf, sunglasses. Protecting your eyes in Sarcoidosis

You will also need to cover up the windows in your home to block sunlight, and wear the NoIR glasses when watching TV or looking at a computer screen.

Please ask questions that don't seem to be answered here.

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: * UK Sarcoidorians
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   09-26-04 22:21

Helen,

The implications of finding sarcoid in those two lymph nodes is that your sarcoidosis is still very active and you need to start the Marshall Protocol asap. I hope you can convince your doctor or find another who will support you in this.

Best,

Meg
 
 Re: * UK Sarcoidorians
Author: Helen (---.cache.pol.co.uk)
Date:   09-27-04 15:02

Dear Meg
I have been trying to get any one of my doctors to at least look at the Marshall Protocol I thought I had convinced my GP he said he would do the blood tests and then done the wrong ones, even though I gave him all the papers. Maybe now someone will take me seriously, and not tell me that it can't be active because I have no Cardiac symptoms and that is the only place it has been until now. I have suffered for years with all the classic symptoms as I think I have told you before. Joint pains, fatigue, you name it I have it I will keep you up to date when I have any news. Today I was told I need to have more surgery because My pacemaker has to be moved before I can have Radiotherapy!!!!

Keep Well

Helen
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This is an archive site, membership and posting are no longer allowed.

Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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