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-sites of the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but most of this site is now out-of-date.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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 Archive of UK Sarcoidorians to 14 Feb 2004
Author: Neill Potts (---.kingston-internet.net)
Date:   11-13-02 03:49

To UK Sarcoidorians

Sorry Trevor for creating a new topic but I felt it was the easiest way for me to post this positive message to fellow "Sarcoidorians" in the UK.

Just a note to say that if you are after accurate and factual help this has to be the first site to visit to get those important answers to your questions. Please visit this site and recommend it to your friends and relatives who may also benefit from the advice given.

I have for many years suffered with Sarcoid (diagnosed 1998..suffered since circa 1987) and I have spent many years trying to get doctors to acknowledge the difficulties that not only myself but all of us face with this disease.

On Monday 11th Nov I again saw the 'specialists', however, this time I was armed with loads of information from Trevor and this forum. I have tried this previously with information from other sites but the information was either too in-depth and too complicated for me to make a strong case as to what they should be doing or so poor that it was dismissed as useless. However this time I was armed properly with copies of information from this site and the doctors took a real interest in what I had to say and what Trevor was/is suggesting and recommending.

I would strongly recommend copying "How does Doctor measure my ACE, and my D-metabolites?" and as Trevor suggests take a copy and read it with your doctor.

In the UK they don't measure 1,25 Dihydroxyvitamin D' and 25 Hydroxyvitamin D , however, after bombarding the specialists with all that I had found about the disease they have agreed to do this after reading what Trevor has suggested.

Motto of the story is don’t give up, there is light at the end of the tunnel (and no it’s not someone coming the other way with a torch and trying to find their way out..!!) and don’t accept no for an answer. You only have to go on the NHS website http://www.nhsdirect.nhs.uk/ to see how little they know about this disease (sarcoid isn’t contained in the on-line NHS encyclopaedia..!) and the NHS suggested help support site http://www.sarcoidosis.org.uk/ site is absolutely dreadful and then they ask for £12.00 subscription to use it.! Visit this site and take as much of it as you can to your doctor.

This message isn't intended to belittle or demean any other sites, forums, etc., as all research into Sarcoid is important and will, hopefully, lead to a more structured approach to diagnosis and treatment. This message is my own message written with a knowledge

The lad from East Yorkshire
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-13-02 04:41

And please don't forget Michael's excellent support website at www.sarcoidosis.me.uk. That is an excellent forum for discussing the vagaries of the NHS and other "support" issues.

It is important that SarcInfo.com concentrates on Technical issues, and this is especially so as more and more Health Professionals become aware that this disease is no longer so unknown - and that they, too, can learn (and teach) via SarcInfo.com

..Trevor..
 
 Re: UK Sarcoidorians
Author: Neill Potts (---.karoo.net)
Date:   11-13-02 05:47

Opps .... yes sorry Michael ...forgot to mention your site ..... in my experience of looking for info on Sarc' I've always found USA, Canadian etc web sites more informative and believe that a lot of other people do also hence the message to UK Sarcoidorians on the US site.
Sorry again.

The lad from East Yorkshire
 
 Re: UK Sarcoidorians
Author: Michael (---.surfport24.v21.co.uk)
Date:   11-13-02 08:28

Hi

Neil, its good to see you have found this forum. Now at least and thanks to Trevor you will become very educated and bang upto date re sarcoidosis.

Regards and all the best Michael
 
 Re: UK Sarcoidorians
Author: Steve (---.cvx1-b.man.dial.ntli.net)
Date:   01-05-03 18:30

Hi Neill

I'm due to go to see a specialist in a couple of weeks for my 6 monthly check up (waste of time) and am hoping to persude them to do the ACE/ D - metabolites tests Trevor is suggesting. Being a fellow yorkshire lad I wondered which hospital/specialist you saw so I could possibly refer to your request for tests. I suspect you are more likely to have gone to Hull than Scarborough but any info would be grately appreciated. I'm getting tto the stage where I feel we know more about the disease than they do and if they won't run with our suggestions then we can't do anything.

Cheers

another lad from Yorkshire

 
 Re: UK Sarcoidorians
Author: Denise Testa (---.connect.com.au)
Date:   01-06-03 03:24

God I feel sorry for you lads in the UK.
At my last visit to my pretty decent specialist (although he does prescribe pred for me occasionally) he at least concedes this is a difficult customer of a disease.
One hears horror stories from the U.S. regards health cover. The UK sounds even worse - I recently lost a third cousin by marriage to the inadequacy of the system and NHS in Britain.
I may be coming to the UK for a period of a couple of months for study and my doctor said at my next visit we will have to work out a regime of drugs for every eventuality sarcoid might throw up while I am there because he said the health system was a mess and not to get entangled in it.
Although Australia's health system is also at breaking point we are lucky compared to many other larger populations in the world.
I do hope things get better for all Brits and Yanks too!
 
 Re: UK Sarcoidorians
Author: Meg (---.188.228.34.euc.wi.charter.com)
Date:   01-06-03 06:29

Hi Denise,

I think every health care system has their own set of problems. But I would disagree with your doctor that sarcoidosis is a 'difficult customer'. Not anymore!

Besides Prednisone, what has your doctor ordered for you? Have you had your D-metabolites checked? Has your 'pretty decent' specialist reviewed Trebor's papers? What does he think?

I hope that you will not settle for 'a regime of drugs for every eventuality that sarcoidosis might throw up'. Regardless of the health care sytem you are dealing with, sarcoidosis is now safely treatable.

Best of luck to you,

Meg
 
 Re: UK Sarcoidorians
Author: Debra Simmons (---.freeuk.com)
Date:   01-06-03 07:15

Hi, I too live in England, in fact in Kent, and have been diagnosed since 1977 and have gleaned more in two days from this site than from any other. Today I have had my bloods done, I had to ring my haematology dept to arrange this, and I'm not convinced that they really understand what they are testing for. I hav had my ACE done before and it was high.
I refused steroids so my consultant discharged me with the advice that I could return if it became worse, it did, and I returned, but did not take the methyl pred. given to me. Back too square one. I now have decreased bone density, and when I met my daughter a couple of years ago at the airport, she burst into tears, I hadn't realized how moon faced I had become. So I stopped it all!!!!!! Now I look normal, my weight is getting back to normal (bar the christmas over indulgence). But I still have sarcoid.

I am a nurse and that is how I jumped in with my bloods first thing today, how did you get them (the medics) to listen. The GP who took my blood today, said "when I read it in the BMJ then I'm interested" until then you will be used as a guinea pig. I offered to let him read all the information, but no, he wsn't interested.

What were your results and is your hospital in London or in Yorkshire, by the way, I used to work at Pinderfields in West Yorkshire. Is that near you?

Please reply, I am interested. Deb
 
 Re: UK Sarcoidorians
Author: Neill (---.kingston-internet.net)
Date:   01-07-03 02:54

Hi Steve

My consultant was Dr Greestone at the Castle Hill, Hospital 01482 875875.

Dr Dore (Imunology) at the Hull Royal Infirmary 01482 328541 also said he'd have done the test if Dr Greestone hadn't

I'm still awaiting the results from the November 2002 tests so don't hold you breath :o)

Hope this helps you.

Kind regards

Neill
 
 Re: UK Sarcoidorians
Author: Steve (---.server.ntl.com)
Date:   01-07-03 03:52


Hi Neill

Thanks for the info, armed with some names when I go to see my specialist in a couple of weeks I'll have more chance of getting the tests done. If not I'll ring the numbers you passed on and see if they'll do my tests, after all it's only an 80 mile round trip from my house. I hope you don't have to wait much longer for your results. I'd be interested to hear what they are when you do find out if it's not too much trouble.

All the best

Steve

 
 Re: UK Sarcoidorians
Author: Debra Simmons (---.nhs.uk)
Date:   01-13-03 10:47

Hi, Yes I too live in England, actually in Kent, and I have been amazed to learn so much in such a short time about sarcoid. I have been diagnozed since 1977 and have had the odd remission. I took cyclophosfamide in 1996 - 2000 approx. For set periods during this time and I thought the sarcoid had burnt itself out. No. It is back. No erythema nodosum bumps but flu like symptoms and dreadful headaches and joint pain. I hav e refused steroids and have had my ACE level done, this result is 96, and am waiting for my Vit D test result. I had to beg and beg for this to be done, and have about a week to wait for the results. If the results fit in with Trevors' findings, then I am going to start Minocin and Diovan therapy, the (diovan) is the alternative to Benicar in the USA.

Have you had as much difficulty in getting consultants to listen as I have. Today I have printed out the new BMJ article about Vit D.

Are you being treated in London or outside. I'd be interested to know of any other sarcoidonians in England.

Good luck Deb
 
 Re: UK Sarcoidorians
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-13-03 11:33

Deb,

I hope you can finesse a way to provide your GP a copy of that BMJ article, since that was what he was waiting for. No more guinea pig treatments now...

Congratulations on weaning off prednisone. What a victory that must be for you.

Welcome and "hello" to our our friends in the UK. We are united in our resolve to overcome sarcoidosis, educating ourselves, our health care providers, family and friends in the process .

Belinda
 
 Re: UK Sarcoidorians
Author: cynthia zanchetti (---.oldh.broadband.ntl.com)
Date:   02-26-03 16:00

I'm not sure who will recieve this as I am fairly new to the internet etc. I became ill in December 1999. After lots of lots of tests,scans,in-patient medical procedures,etc I was initially diagnosed with a condition called primary sclerosing cholangitis ( PSC-affects the liver), my many symptoms were textbook with the condition however I never developed the jaundice that usually affects people with PSC. Also I started to develop painful lumps underneath my skin, became very breathless, an annoying cough, joint pain, sinus problems and so on. My consultant in Manchester was baffled, however my dermitologist mentioned possibilty of sarcoidosis. I was referred to the Liver transplant unit at Birminghams Queen Elizabeth Hospital. Consultant there queried the PSC diagnosis and agreed more likely to be sarcoidosis. ( by now it's March 2001!) Eventually referred to the Royal Free Hospital in London. They have a sarcoidosis clinic every Friday.
I was quickly admitted for tests and full body work up. Final diagnosis is that I have sarcoidosis with secondary PSC!!!
In terms of medication I have been on allsorts! Hated the steroids and after 3 months told Doctors I could not tolerate it. (obsessed with food and shot around like speedy gonzales! only to feel shattered days later etc.)
I am currently taking a drug called Methotrexate. It has been brilliant in bringing my condition under control. My health has improved in the following areas...lungs, eyesight, skin, no longer coughing and so on. I know i'm not out of the woods and my specialist in London is looking into other medication.
There can be light at the end of the tunnel. At one stage I could not see the tunnel let alone a light!!!!
Be nice to hear from others.
 
 Re: UK Sarcoidorians
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-26-03 16:46

Cynthia,

Welcome to sarcinfo. Your story of misdiagnosis is familiar. It sounds like you have been through the standard treatments. You're actually lucky that you cannot tolerate the side effects of steroids. Their long-term consequences can be devastating.

I'm glad you're feeling better but I hope you understand that Methotrexate is a very toxic drug that kills the new cells which your body is making. It not only has an effect on your immune system, but also on all tissue growth and repair. You cannot take it for lengthy periods. The immune suppression can make you feel better for a while but it will not cure sarcoidosis. This is because sarcoidosis is caused by mycobacteria. Eliminating these microbes is the crux of Trevor's protocol. When the immune system is suppressed bacteria are allowed to grow, just the opposite of what is needed for a remission.

I hope you will take the time to read the patient tutorials, physician tutorials, links to articles and starred topics on this site. It may take you a while, and you might need a medical dictionary, but you will learn the etiology of sarcoidosis and the latest treatment plan to really help you get better. Print out the physician papers for your doctor and ask for your D-metabolites to be tested.

Please let us know if you have any questions as we are eager to help.

Meg
 
 Re: UK Sarcoidorians
Author: cynthia zanchetti (---.oldh.broadband.ntl.com)
Date:   02-27-03 06:08

Meg

thanks for your response. I will read up on information you mentioned although not sure where to begin as there seems to be so much info around!

I do want to be on treatment that cures the sarcoidosis rather than relieve only the symptoms.

I suppose i'd like to know more re. ARB...not heard about this before.


Cynthia
 
 Re: UK Sarcoidorians
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   02-27-03 10:13

Cynthia,

Try reading through the patient tutorials available at the upper left side of this page. You can read about ARB therapy on the topic, "ARB therapy - nuts and bolts" or (more extensively) by entering "ARB therapy" or "ARBs" in the search engine available just above the topic heading at the top of the page, next to "main menu." Remember to specify "all dates," and you will find a lot of posts on the topic of ARBs.

Sorry about the learning curve.. it just takes a while to digest all the information, but you can ask for help any time.

Best wishes,
Belinda
 
 Re: UK Sarcoidorians
Author: cynthia zanchetti (---.oldh.broadband.ntl.com)
Date:   02-27-03 15:39

Belinda

thanks for your response/advice. You're right it is a big learning curve but important for me to catch up on info. re. sarcoid. Nice to know there are people out there willing to help and guide others.

My family and friends (myself included!) knew nothing about this condition prior to my diagnosis. I suppose that's familiar to most people!

Other medical sites do not give that much info. or minimise the symptoms etc. At one point felt totally isolated with this "thing". It's good to know that it can go into remission and/or be cured.

thanks again
Cynthia
 
 Re: UK Sarcoidorians
Author: Angela (---.cache.pol.co.uk)
Date:   02-28-03 14:48

Neill, how fantastic!
I live 20 minutes from Hull Royal. Dr Dore is my sons specialist for his allergies. I'll be on to him!
I have had no treatment for sarcoid since diagnosis 13 years ago. But have been putting up with the joint and chest pain (Whiich after the first intense year has calmed to an irritating level of pain). I've really only just realised that the 'something' not quite right with my eyes, my horrendous irritability and insomnia, itchy head, not to mention fatigue, headaches and 'flea bites' may be this disease.

But if I do get tests done, what exactly can Dr Dore or anyone else do for me? Other than say 'Yes, you have sarcoidosis'

I must admit to being a bit pessimistic about having any Dr. take me seriously after 13 years of not mentioning it. In 1990 all I got was 5 junior doctors poking the lumps on my legs and the consultant telling them 'You probably wont see this disease again in the whole of your career!'

looking for hope....
An East Yorkshire lass of middle aged origin!
Angela.
 
 Re: UK Sarcoidorians
Author: Steve (---.server.ntl.com)
Date:   02-28-03 15:05

Neill

Have you had your test results yet? I'm thinking of contacting the specialists you mentioned direct although I'm a little apprehensive if you still haven't had your results 4 months after having the tests.

Hope all is well

Steve
 
 Re: UK Sarcoidorians
Author: delma (---.in-addr.btopenworld.com)
Date:   03-02-03 13:55

HI

I live in Scotland and I've been diagnosed with Sarcoid. I have been off and on steroids for 4 years now, and am getting very tired of the side effects. I don't know what to do though, as I tried Azathiaprine, but my liver function tests showed problems, so I was taken off that.

The consultants are now talking about putting me on cyclophosphamide. I don't know what to to do.

I need help...

Delma
 
 Re: UK Sarcoidorians
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   03-02-03 15:11

Hi Delma,

Welcome to sarcinfo. Please spend some time reading the patient tutorials,and physician tutorials at the top of the page, the links to articles at the bottom of the page and the topic messages (threads) especially those that are starred. There is also a search feature on the site where you can type in words and find specific intormation. If a phrase is written in bold type, you can click on it to automatically get more information.

You may need a medical dictionary for some of the papers but I hope you can get the basic idea of Trevor's theory of sarcoidosis etiology and treatment. Let us know if you have any questions.

Meg
 
 Re: UK Sarcoidorians
Author: Alison - UK (---.bas.cvx.blueyonder.co.uk)
Date:   05-03-03 08:13

Hi all in the Uk - England -Scotland - Ireland and Wales

I live in Essex and have been diagnosed with nurosarc for 3 years (origionally mis daignosed with MS before that for one year)

Its good to know I'm not the only one here in sunny UK!

I wondered if anyone has been to London to the Royal Free Hospital Dr Benynon (sarc specialist) clinic to talk about these new findings, I'm soon to visit again and would like to know what responses anyone has if at all.

Have a fab bank holiday all

Regards Alison
 
 Re: UK Sarcoidorians
Author: Alison P (---.dsl.pipex.com)
Date:   05-03-03 13:54

Hi there.....

I am in the UK also, I am from Cheshire originally, but now live in Lancashire.
I was dx with sarc in 1994/5

My GP is trying to find out as much as poss about this disease, but the local hospital has been pretty useless over the last five years......

My consultant is mainly for neuro, so isn't really interested in the 'other' symptoms!!!

Please feel free to e-mail me anytime.

Alison P
 
 Re: UK Sarcoidorians
Author: Steve (---.server.ntl.com)
Date:   05-09-03 05:27


Hi everyone,

Sorry if this has been covered before but I wondered if anyone in the UK could give me some actual names and hospital details of specialists that HAVE done the Vitamin D tests. I am currently investigating further sources as the information given about Dr Dore at Hull has fallen on stoney ground.

My GP is prepared to follow up on any information I can find via this website and will refer me to them once we can find someone who WILL do the test. It would appear we are still having trouble convincing doctors in the UK that this test is important.

many thanks

Steve
 
 Re: UK Sarcoidorians
Author: Trevor Harris (---.plus.com)
Date:   05-09-03 09:28

The London Clinic will do the Vitamin D tests for £203 all in. You
just need to take a doctors note.

Regards Trevor
 
 Re: UK Sarcoidorians
Author: Steve (---.cvx1-a.man.dial.ntli.net)
Date:   05-10-03 09:37


Hi Trevor

Thanks for the prompt reply, I don't mind having to pay for the test but I'm looking for somewhere that can take a sample of my blood without me doing a 700 mile round trip (I live in Scarborough North Yorkshire). I realise this may not be possible and hospitals/clinics may only take a fresh sample, therefore if anyone knows of anywhere nearer or that will take a blood sample without me doing the journey I'd really appreciate it.

thanks again,

Steve
 
 Re: UK Sarcoidorians
Author: Steve (---.server.ntl.com)
Date:   05-12-03 02:30

Angela

Have you had any luck with Dr Dore? I would be interested to know if he has any news on doing the blood tests as my GP here in Scarborough has been told he cannot do them. I'm puzzled as Niell Potts got his done some time ago but up to date I haven't heard from him via this site regarding his results.

all the best

Steve
 
 Re: UK Sarcoidorians
Author: Pepi (---.cchs.northumbria.sch.uk)
Date:   06-11-03 04:18

Hi All,

I have an appointment with a new consultant .. Professor Gibson at the Freeman Hospital Newcastle upon Tyne. Is there anything I should be taking to him ? Has anyone heard any good reports of him ?

Take care

Pepi
 
 Re: UK Sarcoidorians
Author: Diana (---.cache.pol.co.uk)
Date:   06-12-03 01:52

There seems to be much confusion, with people being told their hospitals cannot do the blood tests Trevor advocates. The answer is that virtually all the hospitals cannot do the tests themselves, but what they CAN do is send your frozen blood to Manchester Royal Infirmary where it CAN be done. The tricky bit is first convincing someone to order the test, then making sure the hospital's biochemist looks after the blood properly, knows where to send it and then actually sends it off.

I managed to get my tests ordered at Addenbrooke's in Cambridge, and I told the lady who took the blood that it needed to be frozen, which she organised. It wasn't until 6 weeks later that my GP discovered it was still in the freezer, but after he'd explained to Dr Culank (the biochemist) that the 25D test already performed on another sample did not tell the whole story, it was sent off. It took another 6 weeks for me to discover the results.

Diana
 
 Re: UK Sarcoidorians
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-12-03 14:55

Pepi,

Good luck with your new consultant. Take him the Papers for Physicians and appeal to his sense of compassion. Tell him how eager you are to get well and that you are unwilling to take medications with dangerous side effects and consequences. Ask him to humor you, if necessary, and get the 25-D and 1,25-D tests ordered. Pay for them yourself if you have to. Diana has just posted on how to do this in the UK. And finally, make it clear to him that you have researched this subject and made up your mind to try this safe, effective protocol. If he wants to keep you as a patient, he will agree to help you. Let us know how it goes.

Meg
 
 Re: UK Sarcoidorians
Author: SteveUK (---.server.ntl.com)
Date:   06-13-03 01:40

Hi Everyone

I just thought I'd post this message that I lifted off todays BBC Tetetext service that makes a fairly broad sweeping suggestion about wasting doctors time.
_______________________________________________

PUSHY PATIENTS "HOGGING DOCTORS" TIME

Assertive and better educated patients who challenge doctors with lists of questions "swallow up" valuable consultatin time, it has been claimed.

Needier people who rely on their GP the most thus lose out, according to consumer website head Hilda Bastian.

Patients with information from the Internet are often disliked, she told the British Medical Journal.

She warned that relentless demands could damage any mutual trust. ______________________________________________

I was told by one specialist that we all could gain valuable information when researching things like Sarcoidosis, WE the patients can dedicate far more time to it than the doctors can and if the internet is a source of gaining this knowledge then it should be embraced and not discarded. therefore I hope I am mistaken when I think people such as myself fall into the catagory of wasting Doctors time.

Maybe I should speak to Hilda Bastian and find out.

regards and good health.

Steve
 
 Re: UK Sarcoidorians
Author: SteveUK (---.server.ntl.com)
Date:   06-13-03 02:02

Hi Everyone

I refer to my earlier post regarding Hilda Bastian's statement. I now believe she was misquoted on the BBC teletext service. I attach with my apoligise a link to her actual statement which sounds like a completely different article.

http://bmj.com/cgi/content/full/326/7402/1277

cheers

Steve
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-13-03 02:19

Steve,
If you go to URL
http://bmj.com/cgi/eletter-submit/326/7402/1277

you can leave a commment /letter which will be attached to Hilda's article.

I post quite a few comments on BMJ. Don't be afraid to state professionally and without too much emotion what a silly thing she has said and why you need more of your Doctor's time to explain what you have learned about Sarcoidosis.

It takes about 8 hours for the message to get posted after you send it.

Don't be afraid to say what you think (professionally, not abusive), this is your life they are messing with...

..Trevor..
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-13-03 02:31

Steve,
The BMJ regards Sarcoidosis as "Too Specialized" to be put in their Journal. (I have that in writing from their Editors)

You might ask how your Doc is going to get up-to-date material if he cannot read it in the BMJ and you are not to be given the time to work through material you yourself research on the Internet.

..Trevor..
ps: I will be flying around California today, but Belinda has posted letters on BMJ before, and she will be able to answer any more questions you may have about the mechanics. Meg has done the same thing on CHEST. It is important to raise awareness of doctors that there have been changes to our knowledge in the last few years
 
 Re: UK Sarcoidorians
Author: Louis (---.access.clara.net)
Date:   07-12-03 04:34

Fellow UK sarcoidorians

Has anyone been proscribed Mynocycline treatment for sarc in the UK? If so, who's your consultant?

Also would be interested to hear if anyone has looked into finding this kind of treatment in the US.

You can email me off list if you'd rather at louisdoyle@yahoo.com

Cheers
Louis
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-12-03 04:39

Louis,
There are around 50 SarcInfo folks who have posted to say they are on the protocol, some have already achieved remission. They come from US, Australia and Canada. I suspect there are many others who never post...

..Trevor..
 
 Re: UK Sarcoidorians
Author: Louis (---.access.clara.net)
Date:   07-12-03 05:38

Thanks Trevor

Do you know of anyone who has followed the protocol under the supervision of a UK-based consultant?

If not do you know of anyone from the UK who has gone abroad to get the treatment? Is there anywhere you could recommend?

It occured to me that it might be worth taking the same approach to ARB therapy as Mohammed did to mountains.

Cheers
Louis
 
 Re: UK Sarcoidorians
Author: Diana (---.cache.pol.co.uk)
Date:   07-12-03 09:07

Louis,

My consultants have been passing the buck on interpreting D results, although luckily one of them ordered the tests thinking he was helping another! It was my GP who took the trouble to read all about Trevor's protocol (and found it fascinating), and he agreed I could try it on the grounds he thought it would do me no harm if it didn't work but might do a great deal of good. I have just got a Diovan 6 hourly 80mg blockade in place (8 hours didn't work for me - D ratio 4.2), have the Minocin and hope to start at a low dose at the end of the week, when life has quietened down a tiny bit and I dare risk Herxheimer. It will be interesting to find out what the consultants think when I next see them.

Diana (Cambridge, England)
 
 Re: UK Sarcoidorians
Author: Louis (---.access.clara.net)
Date:   07-12-03 10:11

Hi Diana

It's great to hear that it is possible to find a GP willing to try this therapy out. The risks, as you say, seem minimal.

I will be paying my doc another visit. Would still like a backup plan in case he says no though.

Good luck.
Louis
 
 Re: UK Sarcoidorians
Author: Mark Flint (---.proxy.aol.com)
Date:   07-14-03 05:11

The consultant who diagnosed my sarcoid was Dr. Jonathan S Mann from the Nuffield Hospital in Wolverhampton. He diagnosed me immediately wheras the NHS doctors didn't have a clue - but then again I've been told I am unlucky enough to be under Stafford GH. I live in Cannock, Staffs. Dr Mann has quite a few Sarc patients so knew what to look for.

Best wishes all in finding relief from Sarcoid.
 
 Re: UK Sarcoidorians
Author: alison (---.dsl.pipex.com)
Date:   07-14-03 14:03

Hi there...

Are there any Sarcoidorians in Lancashire UK?
I am originally from Cheshire..

Alison P
 
 Re: UK Sarcoidorians
Author: SteveUK (---.server.ntl.com)
Date:   07-15-03 04:37

Hi Louis

I got my GP and specialist to agree to the Minocycline treatment after mentioning Trevors theory. Funnily enough they'd heard about Minocycline
but not from that same source, my cynical approach to all this made me smile I have to say. Four months into the the treatment I have suffered a lot of Herxhiemer largely due to it working (I assume) and also down to the fact that my GP will not accept the use of ARB's to minimise my suffering and halt the new bacteria. I'm in a similar situation with the VitD test too. Nobody thinks it's necessary in my neck of the woods, again I think this is due to them not knowing why we need to know, and what they'd do with the information once it's done.

Good luck with your research and lets hope we in the UK can get these people to wake up to the proper way to deal with Sarcoidosis.

regards

Steve

ps. Does anyone know of a Sarcoidosis specialist in the UK?
 
 Re: UK Sarcoidorians
Author: Mark Flint (---.proxy.aol.com)
Date:   07-15-03 05:42

Steve
Try Dr Jonathan Mann from the Nuffield Hospital, Wolverhampton (private) or from New Cross Hospital in Wolverhampton (NHS). Tel 01902 751456. He has quite a few patients with sarcoidosis and seems well informed. Hope this helps.
Mark
 
 Re: UK Sarcoidorians
Author: Andy (---.brhm.cable.ntl.com)
Date:   07-15-03 06:52

Hi Uk Sarc's,

does anyone know of a GP in the midlands ,UK???that specialist in sarc.

thanks all

andy
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-15-03 07:32

Folks,
Please don't forget Michael's Patient support forum at URL

http://www.sarcoidosis.me.uk/

..Trevor..
 
 Re: UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   07-16-03 06:42

Hello to all in the UK and Trevor,

I have been on minocyline ADD for ten months and, altho there was an improvement at first, my ACE and sedimentation rate are now up again. I haven't been able to persuade my GP or the first specialist I saw to do VitD blood tests, or perscribe ARBs (or read Trevor's papers - the specialist more or less threw them back at me, while my poor GP is just too busy and overworked).

I have now been refered to another specialist, so have the chance to start again. My relationship with the first man I saw deteriorated when I tried to suggest there were alternatives to Pred. and dared to ask for him to consider them. I hope the next person I see will be more receptive. Tact isn't my strongest trait but I will try to present Trevor's findings in a more acceptable manner - getting into another confrontation would be just too stressful. I do appreciate it must be annoying for medical professionals who have studied for many years to have patients march in and try to tell them what's what. Perhaps I should confine myself to supplying the website address. Oh well, I mustn't anticipate problems - perhaps this specialist will be modern, forward-thinking and progressive...

Di
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-16-03 08:18

Di,
After 10 months of Minocycline there should be very tangible improvements in your overall condition. What dosage are you using? Has Doc allowed you to titrate up to 200mg qod?

ACE and sed rate will both go up as a result of the antibiotics killing bugs. You would need to have a one week gap in the antibiotic regimen before taking blood for these two parameters.

When trying to figure out why progress may have slowed, it is difficult not to have any D data, as there are two obvious factors which seem to inhibit the minocycline. First is high 25-D and 1,25-D levels and second is steroids and other NSAIDs.

Can you tell me a litle more about the initial improvement, and then the apparent stalling? I assume none of your symptoms have been getting worse?

..Trevor..
 
 Re: UK Sarcoidorians
Author: Mark Flint (---.proxy.aol.com)
Date:   07-17-03 04:36

Andy,

Read my message, directly above yours about a Sarc specialist in the midlands - Dr. Jonathan Mann - New Cross Hospital NHS or Nuffield, Wolverhampton Private. Thanks
Mark
 
 Re: UK Sarcoidorians
Author: Andy (---.brhm.cable.ntl.com)
Date:   07-17-03 09:59

Hi Mark,

Thanks for the info, i will try contact him this week.

andy
 
 Re: UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   07-22-03 01:36

Trevor,

Thanks for replying. I have improved, even though my peak flow is more or less the same. My breathing is feel easier and I am coughing less. The sun has started up the itchiness again, and the London smog isn't nice, but I am not aware of any deterioration.

My last few blood tests have all been done while I was taking minocycline, only the last showed an increase. I have been taking the same dose all the time, 100mg as ADD. I stopped taking pred. earlier this year - my choice, as the GP pointedly said. I am using a Symbicort inhaler daily and Bricanyl (ventilin) when I have an attack of breathlessness.

I am seeing a new specialist on Friday, I rang his secretary and asked her to obtain my notes from the previous doctor, so hopefully I won't have to start by going through all the tests again. But doctors can be so territorial...

I do feel generally better. My energy levels are still lower than before I had sarc. but I have actually run for the bus, twice! (coughed a lot afterwards, but still).

I will try to get the new specialist to do the VitD tests, but as I mentioned I intend to be more cautious in suggesting new things, following my previous unpleasant experience.

Di

ps: what are NSAIDs?
 
 Re: UK Sarcoidorians
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-22-03 09:35

Di,

NSAID is an acronym borrowed from pharmacology. It is an abbreviated way of saying "non-steroidal anti-inflammatory drug." One example of a NSAID is ibuprofen. The NSAIDs are in contrast to steroidal drugs such as prednisone and hydrocortisone.

Belinda
 
 Re: UK Sarcoidorians
Author: Louis (212.42.171.---)
Date:   07-28-03 06:35

Steve, All

Went to the docs this morning with the list of usual sarc complaints and some stories culled from this site. I was, to my considerable surprise, sent home with a prescription for minocycline.

I'm not sure how aware he was of the possible side effects but wasn't going to stop him while he was on a roll.

I forked out for a blood pressure testing kit to help screen out the 'bad' effects from the 'good' and have just necked my first 50mg dose. Now waiting with some trepidation to see what happens next and, assuming there's nothing amiss, plan to ramp up the dose to 100mg in a week or so.

Thanks to Trevor and everyone else involved in this site for giving me the knowledge and confidence to get my hands on a medication which might actually nobble this illness.

Hopefully
Louis
 
 Re: UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   08-01-03 06:02

Belinda and Trevor,

Thanks for the explanation about NSAIDs, I will bear that in mind. I take paracetamol on regular basis, but do not take ibuprofen mainly because my GP warned me against it, and it is supposedly less effective for women.

I have been to see a new team at yet another NHS hospital. I saw the registrar as the main man was on holiday. He has ordered another set of tests in reaction to my last chest xray. These are an MIR, to check out an enlarged node, lung function and ECG. I expected this; although I did call them to let them know I had been seen elsewhere they didn't have my old notes. However, it's now 20 months since I was tested and diagnosed so I am not unhappy. And it will be interesting to see if the Minocycline I have been taking for almost a year registers an improvement. I think my health is really much better, I hope they agree.

I did enquire about the VitD tests and the registrar was aware of the link, but said that because my calcium level was normal there was no reason to do these tests. The only thing that came back flagged as high in my last bloods was the carbohhydrate antigen 125 level at 58. No other changes, so ACE still 68.

I have just finished my pack of Minocycline and thought I should take a break, I have been taking them for some time and my digestion has been upset recently. How long should I stop for? And should I go for a lower/higher dose when I resume?

Di
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-01-03 12:55

Di,
The CWD bacteria which cause sarcoidosis grow very slowly. They take months to culture. It is unlikely that too many will regenerate during a one or two week gap in therapy. Take a break. Assess how you feel. Discuss that feeling with Doc and go over the bloodwork with him.

Your registrar needs to read my tutorial "Calcium and Vit D in Sarcoidosis" and look up the references I cite. He will then be less hasty to link 1,25-D with Calcium. PTH controls Calcium, not 1,25-D.

Decades of Doctors have been trained based on an incorrect notion of how the immune system works. It may take decades to retrain them...

..Trevor..
 
 Re: UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   08-08-03 04:41

Trevor,

I saw Dr Datta, the registrar, again today, having had another round of tests. He didn't have any of my past results for comparision, but the current CT showed I still have pulmonary sarcoidosis, however, my lung function tests were 'good'. I could have told them this as my home readings have gone from a low of 280 last winter to 340. I asked the lung function technician for a average for my age, weight, etc. and she gave 390. Given that I don't know if my base was ever that good I can't be far off 'normal'.
I certainly feel better, I'm breathing well and cough very little - even during our current heatwave, the temperature today in London is 33 degrees, when the average for the time of year is 21.
I am going to get more Mynocycline on repeat perscription. As it has been working OK so far I intend to continue taking one every other day. Do you think is the right approach? I will make an appoinment to see my GP but he is on holiday at present.

Di
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-08-03 04:51

Di,
In my opinion the risk of the bugs not being totally killed off is much higher than any risk from continuing to take low dose minocycline. Some of Dr Thomas McPherson Brown's RA patients have been taking 100mg qod for decades. As long as Doc agrees...

It is good to hear your PFTs have picked up. Isn't it nice to not only "feel better" but also have objective measurements to confirm it?

..Trevor..
 
 Re: UK Sarcoidorians
Author: Miguel (193.116.20.---)
Date:   08-21-03 09:05

Dear Trevor,
I just wanted to let you all know that after a year suffering from sarcoidosis it seems like it has finally "disappear". My latest X-ray showed no inflamation whatsoever. I was amazed when I saw the X-ray all the shadows that were there before had vanished. Perhaps this doesn't mean that I am completely cured or that the "sarchy witch" is 100% out of my body but considering I was never prescribed any antibiotics or steroids, etc, because the doctor who saw me last year decided it wasn't necesary i feel very optimistic about the future. I wanted to let everyone know my experience.There is always a light at the end of the tunnel and trevor thank you so much for all you are doing for us.
God bless you!!
Regards,
Miguel
 
 Re: UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   08-22-03 07:16

Trevor,

I saw my GP and was surprised that he had received different information from the specialist. Speaking to the registrar, I got the impression they thought I was doing well and saw no reason to prescribe steroids - much to my relief as I didn't want to go through that battle again! However, the GP tells me the reason they haven't suggested steriods is because I now have scarring in my lungs. He did say this was not necessarily caused by sarc. It could be from the pneumonia I had last year, or the botched biopsy when Harefield Hospital (a heart transplant centre) punctured my lung!

I talked to him about Mynocycline and he has agreed to my continuing to take it. He has given me another pack of 100grm, to be taken daily. I had decided to cut this down to one every other day. Should I continued with that or stay with his dosing?

Finally, my hip joints are very stiff and I am getting sciatica down one leg (just shoot me now). Does anyone else have problems with this and any tips for dealing with it?

Di
 
 Re: UK Sarcoidorians
Author: Admin (---.dsl.dock.net)
Date:   08-22-03 07:20

Di,
If you want to kill bugs that cause sarcoidosis you will need to take the antibiotic every two or three days. There has to be time for your immune system to clear out the dead cells and allow the antibiotic to penetrate the granuloma again.

..Trevor..
 
 Re: UK Sarcoidorians
Author: Rox (---.cache.pol.co.uk)
Date:   08-27-03 13:05

Hi Niell,
I was diagnosed last xmas, told I'd had IT (sarc) for 13 yrs and I was bound to get sick in the end because that's what happens, this from a Neurologist. I feel I have been banging my head against a brick wall all this time, I know this is the norm for sarc people but it is hard here in the UK. I almost feel I have been on Trial and have had to prove my case. I have a positive outlook and make the best of things but it's tough going at times.

good luck Rox
 
 Re: UK Sarcoidorians
Author: Chrissie (---.cosh.broadband.ntl.com)
Date:   09-07-03 15:25

Hi everyone, my husband has got sarcoid, he was diagnosed in early March of this year. He is in hospital due to a severe flare up, which has affected his heart. He was originally diagnosed with skin and lung sarcoid, but has now also been told he has cardiac and neuro sarcoid. The doctors are seeing him in the morning to discuss a new drug regeme, as up until now he has been on prednisolone and methyltrexate.

It is great to know there are others out there who are also battling on in the UK.

Love to everyone out there with Sarcoidosis.

Chrissie, Hampshire
 
 Re: UK Sarcoidorians
Author: Meg (---.112.206.202.eau.wi.charter.com)
Date:   09-07-03 19:41

Hi Chrissie,

Welcome to SarcInfo. I'm sorry to hear your husband is so ill. As I'm sure you've read already, the folks here are battling sarcoidosis with the use of ARBs and antibiotics . Nothing else is effective. Do you have any idea what drug regime the doctors plan to try next?

Let us know if you have any specific questions about Trevor's protocol. We'll be happy to help in any way that we can. Give our best regards to your husband and please let us know how he is doing.

Meg
 
 Re: UK Sarcoidorians
Author: Aram (---.blueyonder.co.uk)
Date:   09-18-03 16:15

Hello everyone
I am a fellow sarcoidorian.
Until recently I was under the impression that when you are ill you go to your doctor and they sort you out.I didnt expect to have to study medicine to try and save myself.just like Im not expected to learn how to fly the plane when there is a pilot,fix my car when there are mechanics,why hire lawyers and accountants?I might as well study that too.(and save a lot of money).
Im self employed and have no time for this, I want it sorted out by those who are qualified to do so.
If there is a cure then we should get together and fight as one to get it recognised and make it available for everyone,rather than going it alone!
Good Luck
Aram
 
 Re: UK Sarcoidorians
Author: Anon (---.access.clara.net)
Date:   10-15-03 11:44

Hi folks

Just over I'm one of the fortunate few to have found a UK doctor willing to prescribe me minocyline. It had almost immediate positive effect.

Unfortunately I've had a setback which I'm struggling to understand. I went back to my GP for what I thought would be a routine visit to extend my mino prescription. And following a brief conversation in which I told him of the improvement I was issued with another prescription.

It was only when I arrived at the chemists I realised that I'd been given a prescription for oxytetracycline instead - which I now know to be another antibiotic. I've called the surgery since and been been told the reason for the change was that oxytetracycline it is less likely to cause side effects.

But I am left mystified because I had not complained of any on my visit. I am also deeply disappointed because I have had the medication which promised to end years of discomfort withdrawn. Trevor seems to think that the new medicine is so outdated that it is likely to prove useless.

Has anyone had any similar experience? Do you know if there might be any other motives, such as cost savings, which might have motivated my doctors sudden change of heart? And can anybody suggest how I can get him to change his mind, or failing that find a doctor who will give me the medication I need to get better? I don't mind paying.

Louis
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-15-03 11:51

Anon,
I can think of a motive - dirty tricks. Some Doctors are so keen not to admit they have been wrong all these years that 'dirty tricks' are what I see from time to time. Maybe he doesn't want you to get better Maybe you were prescribed the Minocycline initially just to show you that it doesn't work. Perhaps it wasn't supposed to work.

Insist on Minocycline. Our peer-reviewed paper "Antibiotics in sarcoidosis.." talks only about Minocycline. There is no reason for your Doc to deviate from that, especially given your favorable response to Minocycline. Minocycline has been used over several decades at a much higher dosage than Sarc patients use
"Treatment of rheumatoid arthritis with antibiotics"

But I doubt that the science will make any difference. Would you mind letting me know (by anonymous email is best) the name of the doctor involved?

..Trevor..
 
 Re: UK Sarcoidorians
Author: Louis Doyle (---.freeuk.net)
Date:   10-16-03 11:47

It doesn't seem to make much sense to me to abandon mino so soo. But with some misgivings I've been persuaded to try out the oxytetracycline I was given (see my post above) to see if it is any use. I'll be pretty narced if it's a blind alley and I wind up feeling sick again for the sake of concerns I do not share.

I was told by my doc that the reason for the change was that there were some long term ill-effects to taking mino which the doctor wants to avoid. I've yet to find any evidence of such ill-effects and can't quite see how a month can be considered to be long term. I'd be grateful to know if anyone knows what studies he's refering to.

Feeling pretty fed up, but determined to go back and ask for the stuff that works if this new approach fails.

Louis
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-16-03 21:25

Louis,
Not only is it unwise to change your antibiototic right now it is not justified by science.

You need the most powerful CWd antibiotic available. I have stopped talking about Doxycycline because when I tested Doxycycline it gave me wierd neuro problems when I took a very high dose (don't ask) trying to find some herx. There wasnt any. According to my books, Oxytetracycline kills even fewer bugs than Doxycycline.

The only reason I said to try a dose is in my hope that oxytetracycline obviously will not work as well as the Minocycline, and then you can go straight back to Doc and read him the riot act.

It is dangerous not to use a full spectrum antibiotic like Minocycline. Even Mino only kills some species of bugs and lets the rest develop, those other species are what we needed Azithromycin to kill.

..Trevor..
 
 Re: UK Sarcoidorians
Author: Alison-UK :) (---.bas.cvx.blueyonder.co.uk)
Date:   10-29-03 14:58

Greetings All

I'm off to see my Sarc specialist at the Royal Free Hospital - London to see Dr Benynon, on Thursday, and am refreshing my self on the info available

I've been on Minocycline for approx 4 months, and am on 10mg mx and (10mg pred altermative days).

I got on the mino via Dermatology dept, and when speaking to Sarc specialist, he said that he had heard of the theory of Mino & Sarc

I have not yet been prescribed any ARB's.

I requested the 1,25-D and was informed that I was having this blood test anyway. I was elevated as to think this was happening without my knowledge.

I now understand the test I have had is the 25-D, so i'm half way there.

I'm taking my dad tommorrow for a bit of that male support stuff. Will let you all know if there's any progress in this camp

Regards

Alison : ) - Essex
 
 Re: UK Sarcoidorians
Author: Louis Doyle (---.adsl.elite.co.uk)
Date:   11-03-03 09:44

I did three weeks on the oxytetracycline I was prescribed [see my post above]. And, as Trevor predicted, I had no herx and found myself beginning to feel lousy again. Thankfully my doctor put me back on the minocycline and have eased my way back in with a 50mg dose which has had an immediate herxheimer reaction. Strangely welcome.

Louis
 
 Re: UK Sarcoidorians
Author: Diana (---.cache.pol.co.uk)
Date:   11-07-03 04:20

Trevor and all in the UK,

I have just been prescribed Olmetec (Benicar's name here) by my GP, the pharmacist has ordered it, and I should have it shortly. It is in the latest drug book as a "new medicine", so if your GP only has an old copy he may not know about it yet, but IT IS NOW AVAILABLE!!!

I'll let you know how I find it compared with the Diovan I have been using.

Diana
 
 Re: UK Sarcoidorians
Author: Margo (---.dsl.intrex.net)
Date:   11-07-03 09:46

Diana,

That's great! We sure found Benicar to be much better than Diovan.

Trevor is away for a few days, so I am filling in, a little.

Margo
 
 Re: UK Sarcoidorians
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-07-03 16:59

Diana,

If you have any question about the dosing of Olmetec/Benicar, you should find the answers in the SarcInfo frequently asked questions. Keep in mind that the dosing of Olmetec/Benicar that sarcoidois patients find acceptable is not the same as the usual dose for hypertension in normal people.

Belinda
 
 Re: UK Sarcoidorians
Author: Pippit (---.asm.bellsouth.net)
Date:   11-07-03 20:28

Diana,

That is great!!! You might want to let people know that on Michael's board too since that is based in the U.K.

Pippit
 
 Re: UK Sarcoidorians
Author: Diana (---.cache.pol.co.uk)
Date:   11-08-03 07:19

Belinda,

Thanks for your message, but I am aware of the suggested protocol dosage. I was lucky to have a GP give me Diovan at 80mg every 6hrs straight off (in spite of my having low blood pressure at the start). This was back in June. Now that Olmetec/Benicar is available here he has immediately prescribed it at 40mg every 6hrs, although I did have to show him the bit in FAQ to remind him that it didn't matter the dose being larger than recommended for blood pressure problems.

Diana
 
 Re: UK Sarcoidorians
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-08-03 08:15

Diana,

Good work -- and it's terrific that your physician understands and is working with you.

Belinda
 
 Re: UK Sarcoidorians
Author: Marilyn (---.nas.onetel.net.uk)
Date:   11-12-03 23:05

Greetings...I have just found your networkand am overjoyed.
I also have been attending Dr Beynons London clinic ( sarcoid diagnosed in 1985 in liver but too late for steroid treatment, it thankfully went into remission) and in the past his reply to my pleadings for help for sarcoid fatigue has only been to offer me a blood infusion which I refused ( it would need re doing in six months time etc ) . He has most understandingly referred me to Moorfields eye hospital when I was diagnosed with sarcoid uveitis last year and I am now off medication . I must admit to self medication with vitamin C and E and under tongue lutein spray.
The fatigue, aches and pains still go on and I would appreciate more information on how the antibacterial treatment is being accepted by Dr Beynon and if I request it can it be monitored at the hospital...or is it better to find a private doctor ....does anyone know of a doctor in the southeast knowledgable in this treatment? many thanks for all help and advice...its comforting to know you are all out there...... feel well....Marilyn
 
 Re: UK Sarcoidorians
Author: Pippit (---.aep.bellsouth.net)
Date:   11-13-03 00:36

Marilyn,

Could you tell me where in the Southeast you're looking. Maybe I can help. Is this in London? I have one name that is a little hard to tell where it is. It says GU5 OPE. Is that in the right area?

Pippit
 
 Re: UK Sarcoidorians
Author: Marilyn (---.nas.onetel.net.uk)
Date:   11-13-03 12:09

pippit.....

Thanks for your reply

Dont understand GUS OPE !!

I am looking anywhere along the southcoast ... near Brighton or Worthing and within the radius up to London, Southampton That is rather vague I know but hope its helpful...
 
 Re: UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   11-13-03 13:27

Marilyn
The postcode GU5 0PE is in Guildford, Surrey. Not too far...? All the best,
Julia
 
 Re: UK Sarcoidorians
Author: Marilyn (---.nas.onetel.net.uk)
Date:   11-13-03 15:38

Julia....Thanks for postcode information..it is not too far....
 
 Re: UK Sarcoidorians
Author: Marilyn (---.nas.onetel.net.uk)
Date:   11-13-03 15:44

Alison-UK .....You mentioned seeing Dr Beynopn at the Royal Free...are you having the antibiotic treatment under his supervision and is the hospital providing the tests and antibiotics? How often do you see him? How is it progressing and was your last visit successful. I am encouraged by you to ask him for the same treatment and really will appreciate any information....hope all is going well...Marilyn
 
 Re: UK Sarcoidorians
Author: Joan (195.72.34.---)
Date:   11-17-03 03:28

A recent post from Marilyn asked for information regarding docs in the south-east who are willing to try out this regime for their patients. Could I please have this info also, again south-east england - anywhere around Reading, Newbury, Basingstoke (Berkshire/Hampshire)... I am amazed this treatment may work, yet so few docs are willing to try it out - yet they hand out the Pred so willy-nilly, regardless of the dreadful side effects. Also, I 'appear' to be in remission after 3 awful years on pred - although I have never had the vit D tests carried out (so I don't actually know if I'm in remission, or if the dreadful sarc is still hiding out somewhere, doing its damage). Therefore, should I still be considering trying to get this antibiotic regime, or should I just 'let sleeping dogs lay' until it rears its ugly head again? Thanks, Joan.
 
 Re: UK Sarcoidorians
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   11-17-03 13:46

Joan,

IMO, 'sleeping dogs' could do a lot of harm. Sarcoidosis can smolder unrecognized for years while silent damage is being done to your body. Get the D-tests done and carefully assess your symptoms. At that point you and your doctor can decide if you need to proceed with the Marshall protocol.

Meg
 
 Re: UK Sarcoidorians
Author: Marilyn (---.nas.onetel.net.uk)
Date:   11-21-03 00:29

Alison : ) Essex

I am wondering about your treatment with Minocycline at the Royal Free Hospital London. What dosages are you on ? Are you also having the Benicar. How are you feeling?
I have requested an appointment with Dr Beynon to start the program and awaiting a reply so any information you can give me will be most welcome
for anyone else able to get to the Royal Free in London, Dr Beynon has always been very sympathetic ...and I have always been warned about Vit D being a danger,even as far back as 1985 when I was diagnosed with Sarcoid. So it was known about, and checked up on but the side effects never spelled out
 
 Re: UK Sarcoidorians
Author: SteveUK (---.server.ntli.net)
Date:   11-21-03 13:35

To anyone in the UK

Is anyone enjoying the minocycline & benicar treatment through their own doctor? If so could you forward your doctors details to me as soon as possible as I'd like my doctor to be able to contact them for mutual approval of Trevors protocol. I would also be interested in those people that are on the Z+ M treatment to also forward their doctors details for similar reasons.

many thanks

Steve
 
 Re: UK Sarcoidorians
Author: Michael (---.server.ntli.net)
Date:   12-17-03 12:22


Hi Steve of Scarborough,
I have been reading your posts with interest. I have had Sarcoidosis for 15 years and live at South Cave near Hull. If you are interested in an exchange of information please e-mail or telephone which ever is most convenient. Good luck with your new treatment.
Mike
 
 Re: UK Sarcoidorians
Author: SteveUK (---.no-dns-yet.ntli.net)
Date:   12-18-03 01:43

Hi Mike

I know South Cave quite well I used to live in Willerby in the 70's.

Please forward your e-mail address and I will contact you within the next day or so.

merry xmas

Steve

ps. With the greatest of respect to anyone in the UK there is a website wasting away that could be used to free up Trevors site. And I'm sure Michael (the owner of the site) would appreciate the traffic.

http://www.sarcoidosis.me.uk
 
 Re: UK Sarcoidorians
Author: Cathy (Cat) (---.in-addr.btopenworld.com)
Date:   12-20-03 13:00

Hello UK people on this page. I've been trying to stir up enthusiasm on Michael's Sarc site for some awareness raising in the UK. I have no idea what to do but just feel that we need to be more visible as a group somehow.

It's hard to follow up all these avenues when one is trying to work and feels so damn tired all the time isn't it? A list of reasonably knowledgeable specialists would be a good thing though wouldn't it?

BTW - does anyone else have heart problems? Apparently I have AV block. How is this treated? My GP is being cagey with me about it. I'm seeing a cardiologist sometime, when I get an appointment, but meanwhile I would like any info about Sarc and heart probs and current treatment in the UK.

Best wishes to all. BTW Joan - I too am in the Reading area - we could share knowledge - do you go to the Royal Berks hospital?

Cathy
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-21-03 12:29

Cathy,
I think writing to the BMJ Editors is a good idea. It is easy to do. You have to fill out a webform very similar to the way you post on SarcInfo. After that you will need to follow up with a phone call.

Here is something specific to ask them about:
When we were trying to find a home for the paper "New Treatments Emerge.." we first sent an early version to the BMJ. Their response was that it was "too specialized" to publish in the BMJ. How can this be? Sarcoidosis patients have to suffer because the disease is too specialized? The paper was, after all, alerting doctors to the role of sunlight and Vitamin D in the pathogenesis of the disease.

Liz and I eventually put the paper up on BMJ's (less well known) Clinmed Netprints server, and it has proven overwhelmingly popular. There have been around 500 people a month downloading the full-text. 500 views for a document that is too specialized? Maybe you could ask BMJ Editors what they meant by 'too specialized'. (FYI I have copied the paper details down below so they can review their earlier deliberations)

Some editors at the BMJ should be sympathetic. Your task will be to find the ones that are, and explain to them why they need to publicize our discoveries to their membership. The final hurdle you will have will be NHS, but, frankly, I think they will jump at the concept of cutting costs by curing patients rather than dealing with successive hospitalizations for the rest of their lives...

..trevor..

BMJ/2002/005421
The Angiotensin hypothesis: how sunlight triggers the run-away inflammation of Sarcoidosis
Trevor G Marshall and Frances E Marshall

Decision: Immediate Rejection: Too Specialised ; Decision Date: 19 Aug 2002
Status: Final Decision
Date Received: 1 Aug 2002
Editor: Gavin Yamey
Corresponding Author: Trevor G Marshall
Keywords: 1,25-dihydroxyvitamin D; Angiotensin II/metabolism; Sarcoidosis; Vitamin D; Vitamin D/metabolism
 
 Re: UK Sarcoidorians
Author: catherine_cjf@ (---.in-addr.btopenworld.com)
Date:   12-22-03 02:07

Wow Trevor - a task! I feel like Frodo.

Yes, this is a good way to proceed I agree and I will try to make it happen. I will ask for editorial help from the other UK sarcs and yourself before I actually send the letter though.

BTW my Christmas present was to be told I have AV block! It certainly would cut costs to cure patients - soon I will have seen 4 different consultants in 4 different departments and all in 6 months!

Best wishes for a peaceful holiday season and thank you for all your help and expertise.

Cathy
 
 Re: UK Sarcoidorians
Author: Guss Wilkinson (---.idgwaikato.govt.nz)
Date:   12-23-03 12:54

Hi Guys & Girls

I know that as I live in New Zealand, what I have to say may not seem all that relevant to you But...

I was introduced to the SarcInfo web site by a sarc sufferer that e-mailed me out of the blue. I was intrigued and read every single piece of research presented and followed up by doing a literature review of my own.

I then printed out multiple copies of all the relevant papers and put them into files that I presented to my specialist who glanced at it and said that he would read it - but did not help at the time.

I went straight to my GP and booked a double appointment. I told him that I am a natural sceptic, that I hate all pseudo science, paranormal claims, alternative medicines etc.

I then gave him the file and said "Here is the research; I know that it is unorthodox, the science is a little shakey in places in that it hasn't exactly followed all the rigours of classical research but I want to try it. These are the medications that I would like you to immediately write a prescription for. You cannot have any ethical objections as I am not asking for any hairy narcotics - the medication is relatively harmless, far less so than any of the treatments I have been on so far (which also are unproven)".

He was impressed and told me that I had certainly done all my homework.

He looked up some of the drugs in his computer and said - OK.

As for the Marshall protocol, I no longer has any doubts what so ever (and this comes from the number 1 arch high sceptic of New Zealand). Whether this protocol is the result of great science or whether he has stumbled upon his discoveries purely by luck - or a mixture of the two, I don't care.

It bloody well works. The Herx is vicious - the symptoms for me are as follows:
Extreme fatigue
Flu symptoms (runny nose, eyes, headache)
Sore joints (especially shoulders and big toe - no kidding)
Difficulty in breathing
Total intolerance to minutest bit of exercise
Difficulty in concentration

The herx comes on about an hour after taking the Minocyline and peaks at around 24-hours after taking the tablet after which it subsides. In the beginning it was so strong that I could do nothing but go to bed - Helena, my wife was very worried.

Take one Olmesartan tablet and all the above symptoms totally disappear (except the intolerance to exercise) within 20-minutes. The symptoms start coming back after 6-hours, but I try to hang on until 8-hours as the tablets are so expensive (NZ$1,100 for three months supply).

As an added bonus, the Olmesartan has completely obliterated the insomnia and I constantly sleep better that I can ever remember having done.

If I don't take the Olmesartan, the herx is close to intolerable. If I don't take the Minocyline, I don't get the herx.

If this is a placebo, it a sodding powerful one and has me hook line and sinkered!! I hope, however, that I am above self delusion.

Olmesartan (Olmetec or Benicar) is not available in NZ, so my GP wrote a prescription for another ARB for me to use (Candesartan), but also wrote out a prescription for Olmesartan and told me that getting it filled was my problem.

The candesartan didn't really help against the herx, but it did kill my insomnia.

After hundreds of e-mails and phone calls to different pharmacies, I managed to find one that would privately import the Olmetec from the UK. It took 3-weeks for me to get the medication and the difference was profound - so my advice is insist on Olmetec.
Because I have reacted exactly as the Marshall protocol predicts, I am now filled with great hope that I will be rid of this disease.

To sum up then, my advice is forget the specialists - use them only to monitor your progress – and tell them so. Use your GP and bully them with well put together arguments and research. Challenge them to articulate their objections.

I threatened my GP and said that if he didn't agree, I would lose all faith in the medical profession and that I would go over to the dark side by spending my money on caffeine enemas, sleeping with crystals under my pillow in a feng chui arranged closet (I actually had no intention of doing so).

Remind him/her that you are the customer. If after 12-months you show no progress, promise to apologise in writing and present him/her with a bottle of whiskey. Doctors are there for you, not the other way around!!

If you don't get anywhere, keep changing GP's. It is hard work, but worth it. If nothing else, it gives you the feeling that you are taking charge of your own recovery.

Good luck & merry Christmas

Cheers

Guss
 
 Re: UK Sarcoidorians
Author: Peter O'Connor (---.in-addr.btopenworld.com)
Date:   01-03-04 08:53

Hi all

I am another person who has just been diagnosed as having Sarcoidosis. The diagnosis came just a week before Christmas and I am glad to have found this wonderful website as I have been trying to find out what was with wrong with me for months.

I live in Armagh in Northern Ireland and have been told that we have the highest instances of Sarcoid in the UK and Ireland. I just wonder if anyone on here has been told this before.

I think I only have a mild form of the disease and to be honest I dont seem to be showing too many symptoms at present, but the fact that it has been confirmed as sarcoidosis I am a little worried that it may return worse than before, I am currently on no medication and the last thing I had done was a bronchoscopy from which I had Sarcoidosis confirmed, and I have heard nothing since. The consultant that I saw in the hospital told me that he would be in contact with me early in the new year to discuss what type of treatment I would be given, and to be honest I am not looking forward to going on steroids.

The interesting thing though, is that I have been told that the consultant who I was seeing at Craigavon Area Hospital in N.Ireland is currently doing some sort of thesis to try and get to the bottom of the disease. His name is Dr Convery and I was just wondering if it was a good idea to let him use me as a guinea pig, which I feel he may want to do.

Anyway, I just wanted to let people know about my situation and congratulate Trevor on a brilliant and informative website.

Wishing you all a great New Year




Peter O'Connor
 
 Re: UK Sarcoidorians
Author: Marilyn (---.nas.onetel.net.uk)
Date:   01-03-04 15:10

Hello Peter....welcome to the "club"...

I was diagnosed with sarcoidosis in 1985 in London. At the time Dr Geraint James was the leading expert on the subject and at one time he invited all the patients who so desired to come to a gathering at the hospital to learn about it and ask questions......the information at that time was almost nil,but it seems even then that there was indeed a very high incidence of sarcoid recognised in Ireland, but it seems that it ran mostly among women and was not hereditary...that was a long time ago and a lot has been learned since....

I was also fortunate enough to not be put onto steroids by Dr James, as it seems the sarcoid went into " remission "......however, the fatigue never went away and often gets worse, especially after summer sun...watch that and your vit D intake..Trevor s information on this is invaluable....

good luck on your treatment........regards Marilyn
 
 Re: UK Sarcoidorians
Author: Peter O'Connor (---.in-addr.btopenworld.com)
Date:   01-03-04 16:24

Hi Marilyn,

Thanks for the reply and also the advice about steroids, the sun and Vit D, its all very helpful to someone that really doesnt know what is happening to them, so I apprecaite that.

Once the treatment begins in a few weeks, I will let you know what course has been offered to me.

Thanks Again



Peter
 
 Re: UK Sarcoidorians
Author: Pippit (---.asm.bellsouth.net)
Date:   01-03-04 16:41

Peter,

Welcome to Sarcinfo. You are right to want to nip this in the bud. Although you may feel that your case is currently mild it is typical for symptoms to get worse if left untreated. As you may have already discovered while reading the papers at the top of the page, Sarcoidosis is caused by bacteria that inhabit the cells of the immune system, triggering granuloma-formation. Getting rid of the root cause is what makes this treatment different and more effective than Steroids or any of the other medications traditionally prescribed for this disease.

Trevor has developed the most up-to-date long-term antibiotics protocol and has discovered also that Benicar (an angiotensin receptor blocker usually prescribed for high blood pressure) is useful to reduce inflammation and to make the antibiotic treatment more tolerable. Alternate day dosing of Minocycline (an improvement upon antibiotics protocols used to treat RA) also helps the body by giving it time to rest as bacteria and it's endotoxin is cleared. The skillful layering of antibiotics is used in a several-step process in which the optimal dosage proportions have been fine-tuned. This process more completely eradicates all the species of bacteria causing the symptoms.

If you are scheduled to see a specialist who has an interest in reasearch maybe you can interest him in following this protocol. This is actually an internet-based study in which patients stay under the care of their own doctor(s) with technical assistance provided by Trevor and the other moderators. This is likely safer than anything else your doctor would offer, and there are many patients here who are getting better. The same cannot be said for those on other drugs which eventually lose their effectiveness and pose considerable risk.

Print out the material on dosing and the rationale behind this treatment and bring it (or even fax it) to your doctor(s). Meanwhile see what you can do to reduce your exposure to Vitamin D by staying out of the sun and avoiding dietary fortified sources. Then you should ask your doctor to do a 1,25-D blood test and give the results to Trevor to interpret. This will give you a baseline from which to compare results before and after.

Please let us know if you have any questions as you read the papers on the various aspects of the protocol and let us know how your doctor(s) are responding to the information.

Hang in there. Help is on the way.

Pippit
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-12-04 09:12

Karen wrote:

Trevor, finally (!!!) I got my ENT, a fellow from the UK to see the light and he agreed to prescribe Diovan for me. Is that ARB OK with you? I am so excited that I have FINALLY found a doctor that your protocol make sense to.

Now I need some advice, please. Do I start the ARB first and for how long, before going onto the mino? I have always had low BP, and don't want to lower it too much further. I aim to start on 25mg of the mino and slowly build it up.

My Dec 3 blood work results : Vit D25 OH = 47( 25-200)
Vit D 1-25 iOH = 102 ( 40-150)

ALT=43 ( 4-43)
AST = 36 (6-42)

All other bloods were in the normal range and family dr was happy enough with them. I have been pretty good about staying out of the sun and not eating Vit D produce, so hopefully this has paid off.

I hope that I too, can be one of the success stories here, in fact, I am confident I will be.

My message to all of you who are struggling to find that one special Dr, is never to give up. It has taken me months to get the medication, despite everyone saying that I would never find anyone to help me. Well, I did, and you can too, even if it does take longer than anticipated.
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-12-04 09:16

Karen,
Always put the ARB in place first. Diovan is effective when dosed 80mg every 8 hours. It is not as effective as Olmetec, but it is much better than nothing. It will tend to block your sinus region less adequately than the rest of your body.

There is an article warning about the dangers of taking Diovan less frequently at this link.

..Trevor..
 
 Re: UK Sarcoidorians
Author: SteveUK (---.server.ntli.net)
Date:   01-13-04 01:33

Karen

Well done, you may not have got the ARB that Trevor is suggesting but it's a step in the right direction.

Could we have the name of your UK doctor please as without it everyone will struggle individually to get as far as you already have. These contacts are vital for other sufferers to get Doctors talking to each other.

Thanks

Steve
 
 Re: UK Sarcoidorians
Author: SteveUK (---.no-dns-yet.ntli.net)
Date:   01-21-04 03:54

Trevor

I presume you are aware but thought it appropriate to mention for others who have not visited the site recently.

I was shocked to find that last weekend Michaels site in the UK is having to close due to lack of funds and dare I say lack of support. I myself have posted many times on the site and tried to encourage debate. Michael had previously pointed out that several hundred members frequently visit the site and read it's posts but fail to contribute in any way. If it hasn't already happened he is now closing the site after only 3/4 members were in support of the suggestion of a monthly subscription. In some way this does not surprise me. Very recently we were in discussion of the posibility
of doctors allowing patients to try both the Z+M treament and Olmetec. Without this forum most of us will be left on our own.

I'd like to thank Michael through this site for everything he has done and hope it is not the end of Sarcoidosis.me.uk

Trevor I wondered if you had any suggestions in terms of for example a drug company sponsoring the site as Michael/Guss suggested to offset the costs. This is a much needed site in the UK and would be regarded as a backward step if it has to close.

many thanks

Steve
 
 Re: UK Sarcoidorians
Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date:   01-21-04 11:58

Actually, Steve, I live in Toronto, and my ENT dr is from the UK, but practises here. Wish I could be of help to all of you...

We can't get Benicar here in Canada, so I have to be satisfied with the Diovan script I now have in hand. Wish I knew a US dr who could get me the Benicar.....

Best of luck to you all, and good health , too.
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-21-04 21:06

Steve,
I know of no drug company who would sponsor an Internet website. There probably are some, but I do not know which ones.

Running a website is a huge investment in time and money, and I can understand why Michael feels he has been let down by the community. I was a little sad that he closed the forum so completely, locking out even read access, but that is his choice.

One time before he was thinking he would need to close it, and I did offer him bandwidth on my server.

..Trevor..
 
 Re: UK Sarcoidorians
Author: Michael (---.zen.co.uk)
Date:   01-21-04 21:54

Hi

The cost of bandwidth or hosting charges for the forum was not an issue in my choice to suspended it.

It was the realisation that the vast majority of those that made use of the forum, either as visitors or members. Have no interest whatsoever in contributing to the forums continued survival.

Once they had got what they wanted they left, not concerning themselves with the next person that the forum could have helped.

However the forum is not closed and it is my intention to re-launch the forum as soon as possible with a subscription membership.
 
 Re: UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   01-23-04 06:18

I'm sorry that the UK forum has closed, but perhaps there's just not enough of us to generate the diversity of discussion this site, with contributors from all over the English speaking world, can support. I had a discussion with one specialist, (who I have stopped seeing), about the internet, and told him I had been given advice by someone in Australia. He said, "well it's hardly next door". I pointed out this really didn't matter. Much of what I like about Trevor's site is feeling part of a global sarcoidian community, with the range of information and opinion this brings.

I do have one question. On my last visit to the specialist, I asked whether my stage three pulmonary sarc. had improved as I was feeling so much better, only to be told that, if you have stage three, you have stage three and that's that, it will either stay or go, but not improve incrementally. If this is true, why do I feel better? Surely, if the sarcoidosis stage can't change, one's general health and fitness should remain static? Have I completely misunderstood the condition?

Di
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-23-04 06:34

Di,
Gottlieb's classic study not only shows relapse after steroids, but in the full-text (which you will have to get from your library) they found that Patients beyond stage I usually don't get better at all.

But it is a common misconception that chronic sarc can 'go away' when it is really just one facet of the disease which disaapears from view, popping up much later after destroying another organ somewhere. Usually the fatigue (and etc) stay around, even if the patient has grown used to this, and does not notice it any more.

Of course one can get incrementally better. I wonder why you were told otherwise? Maybe it is the unreasonable fear of fibrosis manifesting itself again. I even saw one leading pulmo who was saying that fibrosis (which is largely inert biochemically) was responsible for the fatigue, etc (which is preposterous)(as those of us who have recoved, who still have fibrotic tissue, yet who feel wonderful, can attest). There is so much that medicine needs to learn about autoimmune disease...

..trevor..
 
 Re: UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   01-23-04 12:22

Michael

I'm one of the guilty ones who has had to opt out of your site on being threatened with (realistic) charges. But please don't be so bitter about us - in my case, my family has just suffered a crushing financial blow in having to replace our car with an automatic, as the sarcoid arthritis in my left ankle was making clutchwork too unreliable for safety.

Perhaps we should just form a UK subgroup on this site?! (OK Trevor - only joking!)

Julia
 
 Re: UK Sarcoidorians
Author: Margo (---.dsl.intrex.net)
Date:   01-23-04 13:42

I don't know if this would help, but there are free sites, like Yahoo, that host discussion groups. You can make the group open to all, or members only.

Margo
 
 Re: UK Sarcoidorians
Author: Michael (---.zen.co.uk)
Date:   01-23-04 17:04

Hi

Re Sarcoidosis.Me.Uk

Forum archives are now open to all forum members.

Regards Michael
 
 Re: UK Sarcoidorians
Author: catherine (---.in-addr.btopenworld.com)
Date:   01-25-04 16:11

I'm very sad about the closure of Michael's site.

My round of appointments continues - now have malfunctioning tear ducts and early cataracts. I'm completely fed up now and feel like ****. However I'm still working but am in a lot of pain and discomfort, with sweating and chills and joint/muscle pain amongst other things.

Nothing is happening except more and more appointments and monitoring. I'm trying to interest my GP in Trevor's protocol but he's obviously nervous of alienating the 'specialists' I'm seeing. I know that nothing happens unless you make it happen but sometimes it's just too much to do on your own. This is why I had hoped that somehow the UK sarcs could actually meet up in some way other than onscreen so that we could offer each other more direct support.

Just about ready to throw in the towel and accept steroids to feel better.

BTW has anyone any information about disabiity benefit in the UK as it relates to Sarcoidosis?

Cathy
 
 Re: UK Sarcoidorians
Author: Pippit (---.asm.bellsouth.net)
Date:   01-25-04 20:54

Cathy,

I remember going through that long, drawn-out process. It is very exhausting and upsetting to feel bad and have the doctors take their sweet time getting down to business.

One thing that might help is to have one or more of your doctors call Trevor to ask whatever questions are still holding them back from doing this. If they realize they can consult with him and that they are not expected to start this without help they may feel more secure about it. My doctor has never used the phone number on Trevor's papers but just having it made him feel better about going ahead.

It is sad that Michael's site is closing but once you get the antibiotics and ARB and start feeling better you'll find that you feel better emotionally too. There's lots of support here but it's just centered around the treatment. You might even find some pen pals in the process.

Stick to your guns and resist the Prednisone. Let us know what's happening with your doctors. If they have any specific concerns maybe we can come up with certain targetted studies for them to read that will help you convince them.

Pippit
 
 Re: UK Sarcoidorians
Author: Cathy (212.219.186.---)
Date:   01-26-04 03:33

Thank you Pippit - I needed a pep talk! It's hard to keep one's resolve when feeling ill and being a single parent (with elderly parents) I feel a bit unsupported.

I will certainly emphasise the fact that Trevor is accessible to answer questions from health professionals. I would so much like to feel just a bit better - I sometimes feel so ill that I think I'm dying and that there's nothing anyone can do to stop it.

I will see my GP again this week. I think although he must dread me coming in now, there's nothing Dr's hate more than a patient who they can do nothing for. Still maybe here's an opportunity for him to do something positive to help.

Thanks again

Cathy
 
 Re: UK Sarcoidorians
Author: Diana (---.cache.pol.co.uk)
Date:   01-26-04 03:46

Cathy (and anyone else looking for a UK prescriber),

I asked my GP if he would be prepared to talk to other doctors about putting me on Olmetec (UK name for Benicar) and Minocin, but I'm afraid he said "no". His reasoning was that he agreed to let me try because he thought at the very least it "would do me no harm". Although he thinks I seem to be doing "wonderfully well", he says he would not be able to talk knowledgeably about the protocol, because all he knows about it is from reading the papers on this site that I have given him, and what I've told him from reading links from it. Any of you could provide the same for your GP. He did reiterate though that concentrating on the "it would do no harm and might do an awful lot of good" approach with your own doctors could be worthwhile, and that it "was the logical thing to try".

We have trodden on one set of neurological consultant's toes by me refusing to stop Trevor's treatment when I'd only just started it - asking to have invasive tests (lumbar puncture etc) later if I was not making progress, and consequently receiving a one-liner saying I had refused treatment - but were determined to try one thing at a time. The true specialists have been worse than useless because each only concentrated on their own little bit of me, and what has happened relatively recently. To cut a long story short, I am now on the list of a more general university consultant physician in Cambridge who seems to be considering my total condition all my life. I believe he has the expertise and clout to get through to these people if he sees the treatment working. His first challenge though is to be certain of a diagnosis. I may have granulomas in my lungs, and dozens of other symptoms, but a transbronchial biopsy was negative and I am even less typical than most. On my (first) visit to see him, it took so long for him to take the history that we had to skip the physical examination. That had to be postponed to March (my fault), and we will go from there. In the meanwhile, Trevor's scheme seems to be a good one, and there will hopefully be less and less for him to discover.

I am more and more of the opinion that treatment of sarcoidosis and similar systemic conditions needs to be overseen by an umbrella person, and GPs are the obvious ones. I suspect the problem is that most patients do not initially realise that their problem IS systemic, and many (like me) do not panic until eg their heart starts misbehaving. I had NO IDEA that so many of the strange things that made me feel under the weather could be connected by a common thread. GPs have just got to be brave and take control.

You also ask about disablility benefit in the UK. Do you mean the Incapacity Benefit that is a long-term Sickness Benefit for those who have paid enough National Insurance contributions and cannot work? (There is also Severe Disablement Allowance for those who have never been able to work.) For that, you need your GP to sign a form to say that you will not be able to work for at least a certain period of time, at the end of which you need another signature to retain benefit if you are still unwell. It doesn't matter what condition makes you unable to work, although that has to be stated on the form, and you may be asked to take a "fitness for work" test to see if you could manage a different job from the one you were doing before. If your Sarcoidosis is sufficiently bad to mean you need help with "tasks of daily living" such as getting dressed or going to the toilet, might fall, or have severe mobility problems there is Disability Living Allowance (I am assuming you are under 65) payable at varying rates depending on how much and when help is needed. Applying for that involves filling in an exceedingly long form!

Diana
 
 Re: UK Sarcoidorians
Author: Michael (---.zen.co.uk)
Date:   01-26-04 06:21

Hi

Sarcoidosis.Me.Uk support forums are not closed.

Basic membership is free, which gives access to the archives, with just over one years worth of posts to view and read.

A small monthy subsription gives members access to the posting forums.

From some of the abusive emails I have received this has not been a popular move. But the alternative was the forum would have closed down and no one would have had access to any part of it paid, free or otherwise!

Regards Michael
 
 Re: UK Sarcoidorians
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-26-04 19:13

Hi Michael,

I'm sorry to hear that you've received abusive emails. That is uncalled for. I'm happy to hear that your archives are available and that members can post for a small fee. You've done a lot of good with your website. Thank you for helping so many people.

Meg
 
 Re: UK Sarcoidorians
Author: Debra (---.nhs.uk)
Date:   01-27-04 10:13

Since last posting several months ago, I was seen by my sarc consultant and sent for an MRI due to memory lapse and short term amnesia. The neuro. rubbished the idea that my sarcoid could do this, and told me that neuro sarc. was extremely rare, and that he was sure that I had suffered a migraine on each occasion, as I could describe "not being able to remember" and how slowly items came back into my mind. On the last occasion this happened, I suddenly felt strange, with no headache, and couldn't remember my eldest daughters' name, nor that of my neighbour or closest friend. My Husband was was with me, and he realized what had happened and documented it straight away. It took about 20 mins with my repeatedly saying my daughters' name ( my Husband had told me) and then it came flooding back. This was really scary. This has happened to me twice before but not for a long time.

I have just finished chemotherapy, cyclophosphamide, methotrexate etc. I was given this specifically because of my sarc. and was told that at least my sarc would not flare!

I have had two white cell transfusions during my chemo as my wbc was so low.

That is now over, but four days ago, I woke with a dreadful sore throat, aching right hand, painful shoulders, feeling edgy with sleep disturbance and recognise the pattern.

Is this possible so soon after taking cyclophosphamide, which in the uk is an unlicensed drug for sarc.

Your help would be appreciated. I am taking bendrofluazide daily and my bp is now quite stable.

Shall I go back on Diovan, or is it too early, and could this be a sarc flare.

Thanks Debra
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-27-04 10:22

Debra,
None of those drugs have ever been proven to induce true remission in sarcoidosis. Only antibiotics have been proven to do that (in two studies now). And Benicar/Olmetec is what you need to deal with the symptoms, not Diovan. It is now in the UK. Insist on it...

..Trevor..
 
 Re: UK Sarcoidorians
Author: Debra (---.freeuk.com)
Date:   01-27-04 13:45

Thank you Trevor. i don't think I explained myself properly. i had chemotherapy IV, and then at the end of the course, they gave me a Cyclophosphamide cocktail over a period of time to try to ensure that my sarcoid didn't kick in when my immune system was down. My ESR at the begining of my chemo was 42 and my Angiotensin was 138. I am having my bloods done again on Thursday, but am finding it difficult to get my Vit D done again. I will persevere.

Do you think that my memory lapse etc. could be directly involved with sarcoid. i saw Dr Geraint James ( an authority on sarcoid) as long ago as 1980, who put me on pred. at 60mg daily with a reducing dose.

I know how busy you are, but a reply would be appreciated. Deb
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-27-04 13:57

Debra,
Of course your memory lapse and delusions are associated with your sarcoidosis. Any one of the folks here at SarcInfo (who has recovered) can tell you that the brain comes back - things that you never even knew were missing, as the sarcoid goes. And certainly your memory and cognitive focus.

..trevor..
ps: Chemotherapy doesn't work - neither does radiation therapy - both are not targeted at the cause of this disease. All you need for remission are the antibiotic cocktails, while your suffering is eased, and recovery sped up, by using Benicar/Olmetec.
 
 Re: UK Sarcoidorians
Author: Debra (---.nhs.uk)
Date:   01-28-04 03:23

Thanks Trevor, I will appoach my GP for Olmetec. My chemo was not for sarcoid, but for a carcinoma, but it has all become quite blurred. I had surgery in May and this chem has been a follow up, and the cyclophosphamide cocktail alone, has been to try and stop my sarc kicking in.

I am sure my GP will give me the olmetec, I then get this in place before I take Minocin.

I am nervous, as my GP knows very little about this, and trusts me to keep him informed via your articles and proof, but feels we are a bit out on a limb, and he is quite aware, that I am pushing him and thereby breaking protocols. My cons. will not agree to give me this treatment. and I have stopped going to see him, as it is a waste of both his time, as I won't take the pred. or aziathiaprine I am offered.

Thanks again

Debra
 
 Re: UK Sarcoidorians
Author: Di (---.in-addr.btopenworld.com)
Date:   02-06-04 07:36

Trevor,

Thank you for your reply. I've been very busy - lecturing, rushing around and getting on with my life (if a bit breathlessly), so haven't been back to the site for a while.

I wasn't actually told that I couldn't improve incrementally, that was my (mis) understanding of the answer I received when I asked whether I still had stage three sarcoidoisis. The first part of the reply was, as I reported before, that stage three was stage three. The doctor also said that my condition was stable, if not slightly better, based on my lung function test results. He also said that it may never actually 'go away', but that, as long as I didn't get a chest infection, I should remain stable.

I had read that sarcoidosis could remit and I had thought, since I was first diagnosed, that I would 'get better''. And, to some degree, I have, but I still get breathless on exertion and have intermittant coughing jags. But you say total recovery is a myth. I find both what the specialist said, and your comment, a bit depressing.

I do get occassional attacks when I feel that I can't breathe, or swallow. I also feel very congested. These bouts usually occur at night (I had one last night), waking me up for an uncomfortable hour or two. I had thought this was Herxheimers, but I'm not taking Minocin at present, as I was getting terrible digestive problems. Do you know what may be causing this?

On the whole, I think I can 'cope' with the symptoms I have. The specialist told me to keep fit and not put on weight, but they all says that, don't they? I was disapointed after my last visit to the lung clinic. However, it's probably no worse than living with asthma, and as long as I keep well and fit I should be OK. I have a clinic appointment next month when they are going to do another lung function test, as well as a chest xray - although I read a report the other day about the incidence of cancers in the UK caused by xray exposure (0.6%, I seem to remember!). Perhaps, despite accepted thinking, it may be possible to improve the underlying condition as well as general well being?

Di

Di
 
 Re: UK Sarcoidorians
Author: Ellie Parker (---.server.ntli.net)
Date:   02-10-04 17:53

Hi, regardiing an email on this site from Di, on 8/22/03 I too now have sciatica pain in my left leg. I have had this for some years now, the theory is that I have slipped a disc in my lower back, which is touching the sciatic nerve, which is causing the pain. For the last 3 years I have been attending a hospital in London, for spinal injections, again I believe the theory to be that the injections will slightly shrink the disc, and therefore it will not touch the nerve. I am about to go for my 4th injection on Monday next. 16th March 2004, the last 3 years it has improved somewhat, but also comes back after 6-8 months, until I start screeming "They shoot horses, don't they". I will let you know if there is any improvement this time. It usually takes a month or so for the results to happen as such. The only other option is an operation, and I really don't want another operation.
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-10-04 18:04

Ellie,
The injections in your back are (most probably) a long acting steroid. It sounds as though you have not been diagnosed with an autoimmune disease. If you have a (hidden) autoimmune disease then steroid injections are the worst possible therapy for you in the long run. Talk with Doc about how long they can keep doing this before
1. you lose bone mass from the steroids
2. the steroid loses its effect, and the dose reaches dangerous levels.

And I disagree that you can deride options without knowing exactly what is causing the pain in the first place. Anyway, if you leave more detail, I am sure somebody will be able to help you think this all through.

..Trevor..
 
 Re: UK Sarcoidorians
Author: Ellie Parker (---.server.ntli.net)
Date:   02-10-04 18:05

Hi, I believe that in the past you have 'rubbished' a charity called SILA (Sarcoidosis and Interstitial Lung Association. I would like to offer a word in SILA's defence. I have belonged to SILA for some 10 years or so, and though not on the committee, (I am not into committees) I have helped out through the years on clerical matters. Keeping a members list in conjunction with the Secretary, of SILA, and I assure you that the membership fee of £12 per month is good value. I know that you don't get a lot for your money in tangible things, but the fact that there is someone there, 24/7 for 98% of the year is surely wonderful. The secretary answers all letters personally, and if you telephone her, she is pretty good at answering all your queries. Although clinical advice is not able to be given, none of us (as far as I know) are doctors, but we have lots of contacts with various facets of the disease, and so many 'side effects' of the disease also. I used to do (myself) a questionnaire for the group, I got to about 60 or so persons, then asked the Doctors that I personally saw, and some of the others asked their Doctors too, anyone want this info? But no, no one was interested. I still help Heather with the Newsletters, we aim for 4 per year, depending on our health. Our web-site is abysmal, but we are still awaiting another patient to re-do it, but Sarcoid keeps getting in the way.
Sorry, I've rattled on somewhat.
Cheers.
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-10-04 18:10

Ellie,
Hi. I have never 'rubbished' SILA. In fact, I have never heard of SILA before your post. Nor has anybody here at SarcInfo ever rubbished SILA.

If I am incorrect I will be happy to remove the offending messages immediately

Sincerely
Trevor
 
 Re: UK Sarcoidorians
Author: Marilyn (---.nas.onetel.net.uk)
Date:   02-10-04 23:16

Ellie......

I would be very interested in reading the information you have collected, and to know more about SILA.

Never heard of SILA, but did know some time ago of a UK sarcoid patients group which was quite hopeless.

Any information about knowledgeable/sympathetic doctors in the South of UK ....preferably near Brighton/Worthing/ or even London? The doctor in Guildford whose name I was given treats RHeumatoid arthrtis patients but through his secretary when I telephoned said not Sarcoid...but to write to him anyway. I would have liked to speak directly -told to ring back - and felt somewhat put off....

warm regards

Marilyn
 
 Re: UK Sarcoidorians
Author: SteveUK (---.no-dns-yet.ntli.net)
Date:   02-11-04 05:38

Marilyn

This is a list of the UK doctors and was lifted off another website they are listed as knowledgable doctors on Sarcoidosis hope it helps you.


------List of names removed by Trevor----------
Sorry, no names on SarcInfo. Two of the Doctors names you left are in any case known to be not helpful, Sorry....


regards

Steve
 
 Re: UK Sarcoidorians
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-11-04 06:28

Marilyn,

Keep in mind that these doctors are probably not familiar with the Marshall Protocol. And that we have found those doctors who are listed as sarcoidosis specialists are particularly resistant to this new, safe treatment.

Meg
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-11-04 09:33

Steve,
I need to comment on your passing of names to Marilyn (in good faith) of Physicians upon whom she would only waste her time.

You need to understand that Medicine and Pharma are businesses. Very big businesses.

The treatment of sarcoidosis patients has spawned a moderately profitable specialty for a handful of pulmonologists. Sarc patients are a lifelong source of revenue, as they never get better, they just get worse, consuming ever-more-expensive drugs and expensive surgeries. In my experience, the concept of a 'cure' has been fiercely opposed by many who should have had the interests of their patients more to the forefront of their minds.

The British Medical Journal recently carried an editorial entitled "No More Free Lunches". It, and especially the Rapid Responses discussion should be essential reading for every chronically ill patient.

That is why Marilyn was given the name of a Rheumatologist, one who has been using antibiotics to treat Rheumatoid Arthritis, and who is on the RoadBack Foundation's master list. We have generally found that these physicians do not rely on Sarcoidosis for their daily bread, and tend to be more focused on helping their patients to recover.

..Trevor..
 
 Re: UK Sarcoidorians
Author: SteveUK (---.server.ntli.net)
Date:   02-11-04 11:57


Sorry for that I wasn't thinking straight. I tend to look at all information as if it is helpful to everyone on Sarcinfo & Trevors protocol. I don't have the devious mind that some seem to have in terms of profitiering from others suffering or even their dismissal of recent breakthroughs. hope I didn't offend anyone and if I did. I sincerely apologise.


Steve
 
 Re: UK Sarcoidorians
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-11-04 19:09

Marilyn,

The key questions to ask any rheumatogist is if they advocate the use of minocycline to treat RA. If they have had success with this, they may be receptive to helping you with the Marshall Protocol. You may point out to them that experience with sarcoidosis patients isn't necessary, just a willingness to learn.

Meg
 
 Re: UK Sarcoidorians
Author: Ellie Parker (---.server.ntli.net)
Date:   02-12-04 08:51

Hi Trevor,
Apparently I got it wrong, you rubbished the SILA web-site, quite right too, the site itself IS awful. It goes under the name of http://www.sarcoidosis.org.uk

I have a website myself, recently re-done for me. I apologise if you were not the one to tell folk that joining SILA was a waste of money. I know one doesn't get too much for the fee, but I still think ANYONE who tries to help general public to cope with this awful disease is worth while.
Cheers
Ellie

Message from Admin:
Ellie, I have had enough of this. If you want to put an advertisement for your organization on SarcInfo then please be honest and say so. Nobody here has "rubbished" your site, and the implication of your continually imputing this action to SarcInfo is scurrilous. Please desist. I have left your ADVERTISEMENT online because I have no problems with doing so. But you are stretching the bounds of reason to keep making these untrue and unkind allegations about SarcInfo.

 
 Re: UK Sarcoidorians
Author: Ellie Parker (---.server.ntli.net)
Date:   02-12-04 09:02

Hi again Trevor,
I have had medical problems since I don't know when, maybe some 30 years ago, but 18 yres ago I was diagnosed with uveitis, 5 years after that I had another problem (hypercalcaemia) I was diagnosed with Sarcoidosis, that is after masssive tests in a private hospital, my work paid for the BUPA, I had to give up work at 51yrs (and I did not like that idea) anyway, one thing led to another, I still take lots of drugs, the sciatica I only one of my current problems, I am almost off the dreaded steroid, but have osteoporosis now, I have had cataracts removed from both of my eyes, steroid damage said I, no said Moorfields, all part of Sarcoid, I have had a heart valve replaced, the Aortic valve, I now rely on a bit of a pig to keep me going. My arthritis is getting worse, not only in my lower back, but my fingers too, I nearly sliced off a finger the other day, cutting up potatoes for dinner, as my 'grip' has gone. I still get pains in my chest, but no longer worry about it. I am coming up 65yrs now, and I really did not expect to live my old age like this, I hoped to be fit, I was always active as a young woman, Keep fit and all that, and I was a 'book-worm' too' my older brother always said I would wear myself out too quickly, and he was right, however, as he died young himself (cancer) I can't tell him he got it right>
I have really high blood pressure, I don't mind dying, it's being incapable I
REALLY don't like. I have already made a 'living will' are they legal in this country, or have I wasted even moor time.
 
 Re: UK Sarcoidorians
Author: Ellie Parker (---.server.ntli.net)
Date:   02-12-04 09:09

For Marilyn
If you contact me direct, email - ellie.vi@v.. .
I will answer all of your questions to the best of my ability.

Although I see some really good doctors with my particular problems, I have through the years become to not necessarily believe all they say.
I keep reminding myself, that they too are human, and have faults, and can't possibly know it all, I have lost faith generally in the medical profession, I was so sure when all this started, someone hopefully a Doctor, would wave his wonderful Stethoscope, and a wand, and make me ALL BETTER,
I still live in hope.
 
 Re: UK Sarcoidorians
Author: Ellie Parker (---.server.ntli.net)
Date:   02-12-04 09:18

Hi again Trevor,
Apologies again and again,
I will not trouble you EVER again
Cheers, and good health.
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-12-04 09:22

Ellie,
I know that every Sarc patient has been through so much suffering that they seem to think that their experiences will have been shared by any other sarc patient, but I can tell you my eyes are excellent, I have had no organs removed, everything is working properly and Doc says I am now perfectly healthy again.

Yet I have had Sarcoidosis since 1967 (stage I) and have been stage IV since 1980ish. My Xrays are online here, just in case you don't believe me.

The difference is that when I was diagnosed I took time off to study for a PhD in biomedicine, and my colleagues gave me invaluable advice. I also deduced the vagaries of 1,25-D in 1986, long before any permanent harm had been done to my body.

This is not a website like SILA, we are conducting a study here to see how many Sarc patients are also put into remission by pursuing the same path I did. SarcInfo is unique. Please take a close look at all the tutorials, and notice that the folks at SarcInfo are recovering their lives again. This is no ordinary website. Please use it wisely.

..Trevor..
 
 Re: UK Sarcoidorians
Author: Marilyn (---.nas.onetel.net.uk)
Date:   02-12-04 11:29

Ellie........

Thank you for replying to me..........Please do read all the tutorials, papers and topic threads....
you will learn more in just reading this website than in all the years of your illness.....this will bring understanding , support and courage to proceed as you deem appropriate....warm regards Marilyn
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-12-04 18:11

TO ALL UK SARCOIDORIANS,
The British Medical Journal has this week run an Editorial titled "Abusing patients by denying them choice"

The BMJ has a "Rapid Response" procedure where anybody can comment on the editorial, and the way medicine is practiced in the UK. Your responses are read by an editor at the BMJ.

To respond to the BMJ article click the link" Respond to the Article" at the top right of the BMJ page, and work through it. The info needed to post there is somewhat similar to how you post on SarcInfo. You do get a preview of what you have typed, so don't sweat it too much, as you can throw away the preview if you goofed up on something. BMJ Responses usually don't get publicly viewable until the next day.

This is the time to start making a noise, IMO
I did send the "New Treatments Emerge.." paper to the BMJ, and some of their editors were interested, but the ultimate decision was that Sarcoidosis was not important enough a topic to interest the BMJ. Now is the time to let them know how you feel you are being treated. Why does a Cambridge Medical Professor prescribe ARBs antibiotics, yet nobody else can get them? Why can't you get 1,25-D tested as easily as in the USA? Why can't you more easily change physicians when you are being let down by the one you have? (and I am sure there are lots more questions in your minds...)

..trevor..
 
 Re: UK Sarcoidorians
Author: Sueukra (---.no-dns-yet.ntli.net)
Date:   02-13-04 14:23

Marilyn

Hi,
About the Doctor in Guildford.
He is a GP so may have been unavailiable when you phoned??

I have not been able to see him personally as have not been well enough yet to get to Guildford but have found him friendly and informative.
I have contacted his secretary and once he phoned me personally when I was having a problem,I hadn't asked for him to ring ,just needed advise.....
I have RA so don't know about him and Sarc but please don't give up on him ,he will advise your GP if required.

Hope that helps
Sue
 
 Re: UK Sarcoidorians
Author: Julia (---.cache.pol.co.uk)
Date:   02-13-04 15:07

Thanks, Trevor, for the tip about the BMJ - I have responded, but I doubt if they'll accept it - I think you have to be a Learned Doc, not just a mere patient, to get published!!

Julia
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-13-04 15:23

Julia,
Good work.
You will find the BMJ accepts responses from anybody, as long as it adds to the topic under discussion, does not abuse anybody (libel), and does not reveal a patient's name or medical history without their permission.
I look forward to seeing your post there.

Now the task is to keep the discussion alive until a Doc in your area reads it and offers a suggestion (or until the Editors figure they need to start remembering the beleaguered sarc patients in the UK)

..Trevor..
 
 Re: UK Sarcoidorians
Author: SteveUK (---.no-dns-yet.ntli.net)
Date:   02-13-04 19:22

Hi Trevor

Re. BMJ article

Mine should be up tomorrow too.

all the best

Steve
 
 Re: UK Sarcoidorians
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-14-04 12:14

Well done, Steve and Julia

Julia's message is on the BMJ at this URL

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 you 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: Alexia Nicoloaou (---.force9.co.uk)
Date:   02-18-04 08:30

Is there anyone in the UK that is is doing Trevors protocol. I would be very interested to find out how you are all doing. My mum has just started taking Prednisolne and I would like to gather as much info on the protocol so my mum can take as much info with her to the doctor. Also anyone know of any good doctors in North Lincolnshire (Scunthorpe).
 
 Re: Archive of UK Sarcoidorians to 14 Feb 2004
Author: SteveUK (---.no-dns-yet.ntli.net)
Date:   02-18-04 14:29

Alexia

I live not too far away from you in Scarborough and am currently on Minocycline & Azithromicin but so far have been unable to persuade my GP to allow me to take ARB's so in answer to your first question I am somewhere near following Trevors protocol but not quite. While your Mum may have just started with Prednisolone you may pick up from this site that they are nothing but a temporary band aid, which will give the impression things are getting better, but in fact they are not. If at all possible it would be best to avoid them especially if long term use is suggested by her GP.

If you read the very early messages on this thread you will find some names of specialists mentioned in the Hull area. I cannot recommend them however as I have had no dealings with them.

I hope this may help you in some way.

Steve
 
 Re: Archive of UK Sarcoidorians to 14 Feb 2004
Author: DarrenGE (213.78.124.---)
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?

<<This question has been moved to the currently active thread for UK Sarcoidorians. Please use the current thread and reserve this one for the archive.>>
 
 Dr Beynon
Author: Tanya (---.proxy.aol.com)
Date:   10-08-04 13:06


Hello All

I want to start by thanking Trevor for your helpful reply and a special thankyou to Marilyn. Marilyn I read your post some months ago and jotted down the name of the Doctor you see Dr Beynon at The Royal Free Hospital. I decided to ask my GP to refer me and after much badgering he finally has. I am delighted to say I have an apointment to see him next Friday (15th Oct).

I feel many different emotions and have high hopes. I have been living on Tramadol since being diagnosed with Sarcoid in August and am really very ill. The though of getting closer to recieving MP is almost to much to take in but if what I hear is true about this Doctor then I will be in good hands! I have been on a merry go round for months and it has been just so harrowing that at times I just did not think I could go on. Now there is light at the end of the tunnel!

Good luck and best wishes to you all, I will keep you posted on how I get on.

God bless

Tanya

 
 Re: Dr Beynon
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   10-08-04 20:56

Tanya,

That is great news! If you have any questions at all, please don't hesitate to ask us. That is why we are here.

If your physician would like to participate with other professionals in a private forum regarding the Marshall Protocol it is here: Private Forum For Professionals.

Good Luck and keep us posted on how you are doing.
Caroline
 
 Re: Guildford Doctor
Author: dga5000 (---.range217-42.btcentralplus.com)
Date:   10-29-04 09:56

Is the Doctor in Guildord that people are referring to Dr Hornett? I have rung several times and been promised a response but so far no joy.

Dan
 
 Re: Archive of UK Sarcoidorians to 14 Feb 2004
Author: Jack (---.access.uk.tiscali.com)
Date:   11-14-04 11:57

Is there any where in the UK to buy the required sunglasses,
and glasses for the office, flourescent and VDU.

Also, is it just normal monitors or is a flat screen ok for the eyes.

Jack
 
 Re: Archive of UK Sarcoidorians to 14 Feb 2004
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-14-04 15:32

Jack,

The information on how to purchase NoIR sunglasses is in this MP.com forum.

I'm not an expert on computer screens. Someone else will have to help you with that question. But I would recommend, in the meantime, to be err on the side of caution. Turn your monitor down and wear inside NoIRs when gazing at your PC or watching TV.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: Archive of UK Sarcoidorians to 14 Feb 2004
Author: Lottie (---.proxy.aol.com)
Date:   11-14-04 18:56

Jack,

I have a laptop computer, and the screen is the same as the new "flat screens" for desktops. Even at it's lowest setting, it is still too bright for me. I didn't realize how bright it was until I started wearing the sunglasses while looking at it.

I would definitely wear the NoIR's with a flat screen monitor.

Lottie

*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
 
 MANCHESTER, (U.K.) Drs Database, Archive of UK Sarcoidorians to 14 Feb 2004
Author: KRESKIN. (---.in-addr.btopenworld.com)
Date:   11-16-04 08:39

Does any one Know a Dr or Consultant in England, (U.K.) or have a reference data base of Drs - Consultants, who has undertaken the Marshall protocol for patients, can you either e-mail me directly at okk109a@y.. or leave me an e-mail address or something, that i can contact you directly on! so i may talk further with this Dr or speak, so i may be able to set up communication between my Drs to him! im in Manchester, England, (U.K.) by the way! hope some one may be able to help, in anticipation, With all good wishes, Kind Regards Everyone, Michael..
 
 Re: Archive of UK Sarcoidorians to 14 Feb 2004
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-16-04 08:51

Michael,
This is the sixth time you have posted a message like this. You posted some at the Yahoo marshall-protocol-new site, you posted some at Penny's Yahoo site, and you posted at Marshall-protocol.com

The response you were give at MarshallProtocol.com was to leave your request on the doctor-request thread there in the normal way, and somebody would get back to you.

The problem with you posting a message like you have done here on SarcInfo, is that I would have to advise UK folks who use this board that I am not sure what you are going to do with Doctor's names you obtain from them. You must know that in the UK any doctor who departs from NHS guidelines is often subject to draconian discipline.

We therefore try to protect the identities of those physicians who are using the MP in the UK, just in case somebody wishes them ill.

I note that your initial posts said that you had been in hospital near Manchester for 20 months, yet you appeared to post those messages from Ealing, near London. I am sure there is a good reason for this, but the moderators have raised their "paranoia alert" levels at this point, and I would be interested in finding out exactly what you situation really is, and why you are trying to get a list of doctors, when one in your area would surely do just as well?

..Trevor..
 
 Data Base Of Drs & Consultants in England, (U.K.) undertaking the Protocol.
Author: KRESKIN - MICHAEL (---.in-addr.btopenworld.com)
Date:   11-16-04 09:34


Edited by Admin - see my message to Michael directly above

Does any one have a Data Base of Drs & Consultants or Knows a Dr or Consultant personally in England, (U.K.) who has undertaken the Marshall protocol for patients? can you either e-mail me directly at okk109a@y.. or leave me an e-mail address or something i may contact you directly on! so i may either talk with this Dr or speak, to him - her, then i may be able to set up communication between my Drs to him! im in Manchester, England, (U.K.) by the way! hope some one may be able to help, in anticipation, With all good wishes, Kind Regards Everyone, Michael...
Here is my story!
I have been in hospital now about 20 months now, I was finally
admitted to hospital & was able to walk but loosing co ordination &
balance in my legs I was walking around like i was drunk! then one
day quick after about a month, I lost the of my legs then bladder then
bowel, then they took my case very seriously!

I had back scans xrays & brain scans etc, they said i had a bioplasm granuloma & inflammation in the T12/L1 level of the spine, it is localized!After 3 Lumber punctures to try & get a sample of what this was without success i had to have surgery a laminetomy at the T12/L1 level on the spine - cutting the bones opening the Dura mater to take biopsies of the arachnoid mater, pia mater & one of the dorsal nerveroots on the left side which appeared to the naked eye to be abnormal! to obtain biopsies of what this was! I had no other alternative at that time! They obtained a samples! After 4 weeks they could not diagnose what this was! so i had no alternative but to get them to keep trying, after 6 weeks they said they think it is Sarcoidosis, "Neuro-Sarcoidosis", but with out being able to make able to make a specific pathological diagnosis! but Tuberculosis could not be ruled out? dureing the 20 months I have nearly lost my life twice!I am on anti-inflammatory medical tablets predisolone & anti spasmodic tablets, I am also concerned about inflammatory issues! I also have MRSA & have osteomylitis bone infection due to a bed sores being cut out & not healing, healing over but inside back tracking due to the MRSA. I was on intravenous & then oral antibiotics. The medical tablets anti inflamatorys, predisolone, just keep the condition at that level in the spinal column at bay, but don't eradicate it, medical tablets are no good for this & physios just for the physical muscles etc & stretching! with the help of so called spiritual healers, reiki & i guess physio,i can now move my legs, & can bare my weight in a standing frame! but cannot walk! so i am wheel chair bound, from my own research Sarcoidosis is viral in nature? so i wanted to try The Marshall protocol, as described on your sites! & literature? I have to try something further! as i am still a young man! How I may undertake - start the Marshall protocol with my doctors? I am in Manchester, England, (U.K.)or may advise! there must be some one with this information Data Base Of Knows Personally? Please e-mail me at okk109a@y.. anonymously if u wish! & if there is any way i can repay u in any respect if u wish, do not hesitate to ask? thanking you all kindly, in anticipation, Kind Regards Michael...

ael..
 
 U.K. Neuro-Sarcoidorians 2004
Author: KRESKIN (---.in-addr.btopenworld.com)
Date:   11-18-04 10:42

sory if you dont like my story as above but its true! you are the ones who Told me to join the Yahoo sites, No im not in Ealing or where ever that is? There must something wrong with your system lol! no offence meant! the system here keeps freezing when you go to post a message? so you have to keep trying! all i was trying to do is see if you have had any Drs or Consultants in England who have successfully undertaken the MP.. you did not give me a responce address to ans you on so i had to respond here! yes there are NHS Drs over here but they also work privately, & in private hospitals! it seem a shame no Drs want to undertake the MP in the U.K. i guess by what i have read no Dr or Consultant thinks it is worth trying or undertaking! I suppose that must be the same for all the non English speaking countrys as well, & people that can access this site! BIG shame! There may be another way you can help Clients & patients with these conditions in other countrys! but its not the place to talk & no one may read it so not worth my while mentioning! any how you have a nice day, With all good wishes, Kind Regards Kreskin.
 
 Re: U.K. Neuro-Sarcoidorians 2004
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-18-04 17:18

Kreskin,

There are doctors in the UK who are treating patients with the Marshall Protocol. Their patients have told them all about it and asked them to help. These doctors know that deviating from standard medical practice in the UK is frowned upon and they do not want their names publicized. Since you are confined to hospital, seeking a second opinion doesn't seem like an option for you. The UK MP-friendly doctors will not call your consultant and persuade him to use the MP. That is something you will have to do for yourself. Here are some suggestions for getting your doctor on board with the MP.

Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
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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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