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Edmund1953
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Posted: Sun Apr 6th, 2008 19:45 |
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Hello. My first post in this forum.
It would be a huge boost to me to clarify if it's possible to have both Multiple Sclerosis and Sarcoidosis existing simultaneously and active. I believe they dont look dissimilar under the microscope and that this is the best possible forum to ask ! Why ask these questions and not just press on with searching for a MP doc? Because I need clarity and my Neuro docs look glaringly at me for having weaned large quantities of Prednisone, both oral and iv! The ace and erythema and uveitis showed up together one year ago. The MS two decades almost. My chest x-rays were negative they say but my reading here tells me it can take time for x-rays to evidence if lungs are involved, and that being radiation, they are best avoided.
I suspect I might have thyroid problems also. Are there specific blood tests which would prove this one way or another. The t3 and 4 I think ?
Is it wise to go back to using predforte or prednisone as my eye pressure is approaching urgent resolution.
Sincerest appreciation
Ed
Last edited on Sun Apr 6th, 2008 20:07 by Edmund1953
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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JRFoutin
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Posted: Mon Apr 7th, 2008 02:17 |
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Edmund1953,
Welcome. I am glad you are here. Please take the opportunity to read the Marshall Protocol Phase 1 Guidelines first if you have not yet. These are also good links to start with:
What is the Marshall Protocol?
The Marshall Protocol -- simple explanations
You wonder if it is possible to have more than one Th1 subcategory symptom sets. From the perspective of those well versed with the science and training of yesteryear then maybe their answer can only reflect a the heavy reliance on Koch's postulates that errantly states there can only be one unique pathogen per disease. From the perspective of the science of this century, you will want to read:
Is the Marshall Protocol an Applicable Treatment for my Disease?
Probably more important than identifying one or another last-century naming convention for your Th1 condition, you and your Dr will want to know what your D-metabolites test resuts show.
On this site, general questions about the Marshall Protocol are entertained. Specific prescriptions or reccomending use of Rx are restricted to the study site where experienced nurse moderators dialog with those who are on the MP.
You might want to read:
EYE INFLAMMATION and Th1 diseases. we recommend you continue to follow your ophthalmologist Rx re your eyes.
Dr. Marshall has created a diagram summarizing some of the key relationships between the body's hormones and 1,25-D. Hormonal Changes resulting from changes in 1,25-dihydroxyvitamin-D
Best to you Edmund1953--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Edmund1953
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Posted: Mon Apr 7th, 2008 15:23 |
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Thank you Janet for the relevant links for my situation.
Only reason Im keen to move away from current eye pressure drops is because i lose my voice and sound worrisome to significant others! I will make sure of frequent eye pressure checks.
About the D Metabolites. Very hard to get the blood assay labs here to comply regarding the 1,25 handling of sample - which Meg suspects may be a false low but my 25oh is in signature line. As for my own primary doctor, he truly has no clue as to the significance of the metabolites. In fact he thinks I should be taking calcium supps with added d! So -lots of reading to do and a MP doc to chase up.
Regards
Ed.
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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Edmund1953
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Posted: Thu Apr 10th, 2008 23:58 |
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One of the things I hope are taken for granted in one's mid fifties is the fact that life has taught us some particularly significant lessons and skills that keep us socially and cognitively on track, perhaps even at the peak of these.
When I first outlined the reason I wanted the D Metabolites testing, my doctor responded positively and respectfully.
The referral letter stated, "Please perform the following blood tests for Mr____. He has Multiple Sclerosis and has done some research on the internet".
Have I missed something I wonder. Blood assay staff needing to know about my desire to improve my life via personal research? The implication of this was that patients using the internet are consulting some kind of monster of ignorance which they cannot identify as such. If a mother does such research for a sick child, (such as looking for a specialist who may have made progress in some other part of the world with a complex illness, deformity) - or if I had said, my brother/friend Dr___ has suggested these tests might offer some helpful insights into a way forward for me to feel better, life would have been easier perhaps.
Or was my doctor simply saying to the lab.....well actually I personally have not ordered these bloods.
This forum is for important questions I know. The right of wellbeing rather than just palliation, will one day be totally unchallenged.
Regards
Ed.
Last edited on Fri Apr 11th, 2008 00:10 by Edmund1953
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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Julia
Advocate (on leave)
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Posted: Fri Apr 11th, 2008 07:51 |
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Hi Edmund,
I'm inclined to agree with you that it was an odd thing to put on a referral form, as if he was sharing a joke with the hospital  . But let's be thankful, he did actually order the tests - that's unusual enough over here!
He might even be open-minded enough to prescribe the MP... if you think it would help, offer to sign a waiver releasing him from responsibility. See Suggestions To Get Your Doctor On Board With the MP. It's always best to try your own GP first before looking for another doc - there are no expert MP docs yet, and even fewer in the UK 
It was through severe uveitis that my sarcoidosis was diagnosed. My eyes healed completely in the first few months of the MP.
All the best for your journey towards health.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Edmund1953
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Posted: Tue May 6th, 2008 00:42 |
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I have an appointment shortly with my neurologist and bone specialist. One of whom will ask me again why I refuse to take the calcium alone and with added vitamin D. I am making progress with my reading of the MP but I would like to present the docs with the best papers written by Dr Marshall on this subject.
Am I right to refuse these supplements or are there exceptions?
If anyone has a moment to point up some links I would be so grateful.
Ed
Last edited on Tue May 6th, 2008 00:54 by Edmund1953
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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JRFoutin
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Posted: Tue May 6th, 2008 05:00 |
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Ed,
Required reading available on the study site about D's so you can better prepare yourself and protect yourself:
25-D3 Information..
The Importance of Reducing 25-D
The Marshall Protocol Phase 1 guidelines and study site required reading do not waiver about ingesting D. Please read and share the guidelines after you highlight that detail. Be prepared when someone has swallowed ample misinformation about D currently floating about the cosmic popular wisdom breezes.
Safety warning
There is no alteration of the MP, or it is not the MP.
Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol -- always good to read if there is a question.
Although not a certified MP publication, Vitamin D as a Rodent Control still makes me shudder.
Probably better to distribute Dr Marshall's perspective:
Vitamin D discovery outpaces FDA decision making
... and companion replies to comments:
My Response to the BioEssays letters is published
Vitamin D Doesn't Cause or Cure Rickets
Hypophosphatemia Causes Rickets
If you are interested in the conflicts of interest swirling around the Vit D proponents, then you will enjoy reading this article from the Canadian Broadcasting Commission:
"The Vitamin D Debate"
http://www.cbc.ca/news/viewpoint/vp_strauss/20080213.html
But those are just starters for your reading enjoyment for a couple of days.
Best to you Edmund--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Edmund1953
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Posted: Sun May 18th, 2008 19:29 |
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Ok so here is where Im up to. Both my eye specialists are in agreement that I have sarcoidosis and want my neurologist to review my case mainly because they understand my concerns about steroids and bone problems. My neurologist finds this interesting enough to want to know for sure and has scheduled me in for a Lumbar Puncture.
One of the specialists is willing to consider the MP once he has studied it in detail but not my neurologist who has firm convictions about 'vitamin' D.
I wanted to ask if the Lumbar Puncture really will confirm if I have Sarcoidosis ? as the dominant disease rather than Multiple Sclerosis... which is the purpose for it, and, if there is any reason why I shouldnt have it. I wouldnt like to undergo it if there is no actual way the spinal fluid sample could clarify this or perhaps even return a borderline 'maybe'.
I have asked for a brain calcification scan which will happen sometime after the Lumbar. This will be even more relevant i imagine.
p.s. could someone please erase my old topic question.
Last edited on Sun May 18th, 2008 19:52 by Edmund1953
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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JRFoutin
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Posted: Sun May 18th, 2008 21:08 |
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Edmund,
Please read:
Which diagnostic tests do I need?
You can choose to avoid any unnecessary tests that take time and don't add to the certainty of diagnosis one whit.
You are correct you must work with a doctor, but you don't need a lot of doctors. Choose one who will take the time to understand the future of medicine, and give them the opportunity to see it happen with you. Everyone else can only offer solutions rooted in past comprehensions that do not result in understanding the pathogenesis of disease, or curing disease.
You can encourage your willing physician to become a member of Private Section for Health Professionals.
Which post did you want removed?
Best to you Edmund--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Edmund1953
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Posted: Sun May 18th, 2008 21:53 |
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Janet. Interesting. I suppose I am somewhat in the soup if I cancel the Lumbar and in the soup if i dont, but I want to offer the neurologist a informed reason. I know that sounds odd as a student of the MP... Perhaps in the pathology lab these two neurological diseases appear similar? I have read one awful experience of spinal damage from LP in your link.
I am currently having what looks like a relapse of MS but in fact it is what happens when the summer sun is around. The neuro calls it "heat sensitivity" If she simply ordered the tests to confirm MS diagnosed 30 years ago, then that would really .
At the risk of seeming stubborn today - I need a little more input as to these tests ( i assume you mean the brain calcification scan is a risk also ?) being a bad idea. I have read the link.
Thank you for fixing my topic question.
Regards .. Ed
Last edited on Sun May 18th, 2008 22:08 by Edmund1953
____________________
Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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JRFoutin
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Posted: Sun May 18th, 2008 22:24 |
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Edmund,
If I understand you correctly, you are saying only a risky test on you alone will convince a neurologist of the Marshall Pathogenesis? 
Why not try using medical publications instead?
(Less risk for you, more expectation that any doctor understand the science, and of course, you don't volunteer to be yet another test result on some ledger that doesn't really matter.)
Also
SARCOIDOSIS.
Also
The Truth About Vitamin D: Fourteen Reasons Why Minsunderstanding Endures.
The right stuff for the MP often includes the ability to negotiate with professionals for your own wellness goals. Those goals start even before the beginning of the MP and should not waver.
Eventually, your study of required reading can help you understand that Th1 chronic inflammatory disease is the parent level that must be described to doctors, and that distinctions in the subcategory levels you are focusing on merely stem from a very old and very limited Koch's postulate framework of disease pathogenesis and Petri dish perspectives. Welcome to the era of the genome (See Marshall's 2007DMM Karolinska Poster, page 2/column 2).
I often recommend people frequently read Amy Proal's http://www.Bacteriality.com site too. A good place to start is her recent presentation in vimeo (movie) format. Here is Amy's description and the link:
"In the following video, I explain the science that forms the backbone of the Marshall Protocol in simple terms. I discuss the bacteria implicated in causing chronic inflammatory disease, and explain how these pathogens affect the immune system. I also describe the basics of the treatment itself, providing information that any patient who plans to start the Marshall Protocol, or any doctor planning to put a patient on the MP, should understand. My narration is accompanied by slides with pictures and images of the pathogens and molecules I discuss. The video is 89 minutes."
http://bacteriality.com/2008/05/07/mpintro/
Best to you Edmund--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Knochen
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Posted: Sun May 18th, 2008 23:17 |
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Ed,
Will you choose some other treatment based on a different diagnosis?
http://www.marshallprotocol.com/forum37/7957.html
It sounds like you have a sarc diagnosis right now. Unless you haven't paid your bill recently, you don't owe the neuro anything.  Remember that "autoimmune" diseases all share similarities (for good reason!), and there have been many of us who have had one doctor say it's this and another insist it's that. Convincing them all to agree is pretty pointless when they don't understand the pathogenisis behind the scenes. They will continue to look at the outward signs as if they have some special meaning. In the meantime, you'll just get sicker and they will send you the bill for your pains.
You have to be your own best advocate. Sometimes that involves walking away from people who would do you harm, even if it's out of an abundance of caution on their part. It's a business relationship; you don't owe them explanations if you believe they are wrong.
I make a living testing things and trying to improve processes. And there is one thing I know. "More testing" isn't always good. You don't loose weight by weighing yourself more often.  Doctors love tests. It makes them money and it covers them legally. After a point, it is not always in the best interest of the patient. You'll have to be the judge of where that line is. The tests are not without their own risks, either.
The final choice is yours. Don't let anybody else make it for you. Who has to live with it?
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Edmund1953
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Posted: Mon May 19th, 2008 12:19 |
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Janet - Knochen, I totally see what you are saying and it makes solid sense. I take it all on board. I need to set up camp on new terrain I know. The reason I have two eye doctors is due to my year long battle to keep my eye pressure at a safe level and neither they nor my neurologist know why this happened suddenly. But so far Ive managed to stay away from steroids since last november. It is taking time to find a doctor to supervise the MP for me and Dr Marshall has said that only a handful of MS patients hang on beyond the sixth month probably due to the immunopathology. Being honest, I am a little daunted but also intrigued by the science.
Knochen, no Im not considering any other therapy - just that life would be a lot easier if the diagnosis was specific as doctors are less likely to claim expertise in Sarc and probably more willing to look at the MP. Im quite savvy enough to know that Dr Marshall's protocol is 21st century.
Can anyone tell me if Dr Kragt who conducted a study for levels of 1,25D in Multiple Sclerosis patients sent the completed study to Meg. I would really like to have a copy if she did. I would imagine the accuracy of the findings would depend on the certainty of correct handling freezing of samples etc.
The 2008 conference in Portugal this september. Is this for medical folks only?
Regards...Ed
Last edited on Mon May 19th, 2008 12:35 by Edmund1953
____________________
Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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Edmund1953
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Posted: Fri May 23rd, 2008 20:13 |
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| I have clearly said something quite unwelcome here, the only conclusion I can make. Perhaps it is better for me to request that you delete me as I dislike a mystery.
____________________
Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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JRFoutin
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Posted: Fri May 23rd, 2008 21:42 |
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Edmund,
Don't give up so easily. Sometimes we get a press of new posts and as humans, we might miss an important question. Don't worry about a mystery. A bump or second post often will do .
You might look at these links:
EYE INFLAMMATION and Th1 diseases << Adequate eye protection will be particularly important for anyone with eye inflammation.
Protecting Your Eyes
Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar?
Portugal Conference Details Someone has asked Meg about MS study and 1,25-D...
Thank you Edmund--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Julia
Advocate (on leave)
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Posted: Fri May 23rd, 2008 23:12 |
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Edmund,
Meg says she has no knowledge of the results of Dr Kragt's study - sorry.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Edmund1953
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Posted: Sat Sep 13th, 2008 02:38 |
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My doctor put me on high doses of prednisone for 10 days twice in the last three months and didnt wean me gradually. Consequently, I am weak and breathless which is not usual for me, my Neuro says I am fine as I show no signs of coma, adrenal exhaustion etc even though she has never seen me so out of breath or battling with so many infections. Should i have bloods checked for adrenals?
I see a sarc specialist soon. Perhaps I can get him to prescribe the Olmetec.
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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Julia
Advocate (on leave)
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Posted: Sat Sep 13th, 2008 11:55 |
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That's a long shot, I'm afraid. Very few consultants are prepared to listen to patients who 'found something on the internet'. It's always best to try your own GP first, or failing that, you could change GP. Suggestions To Get Your Doctor On Board With the MP. I take it you have the (short) MP list of UK doctors... 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Edmund1953
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Posted: Sat Sep 13th, 2008 12:36 |
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I have the list yes, but they are located quite a distance and I am quite ill now. The nearest doctor is no longer seeing new patients.
Did I read somewhere that one or two on the MP are undertaking it independently. I am quite tempted.
From what I have read recently, I think the MP science is penetrating the main stream steadily and faster than predicted. Good stuff!
Regards to everyone. Ed.
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Multiple Sclerosis, Osteopenia, 25D- 35.4ng/ml, 1,25- 66, nocturia, eryth.nodosum, intermediate uveitis, ACE- 181
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Julia
Advocate (on leave)
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Posted: Sat Sep 13th, 2008 13:03 |
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| Edmund, you'll see 'On MP independently' under some members' names. That just means they're not members of the MP clinical trial on the main study site, but are pursuing the MP through their own doctor, who has to join the Professionals' Forum in order to access the whole MP. It would be illegal and dangerous to attempt the MP without full medical support.
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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