Tuesday, May 27, 2014

Advice given for free and believe me it is worth the price you pay (The advice if you do not want to read the whole post is DO NOT FORGET TO LIVE!)

I have been sick for a long time but the past four years I have been so sick it has changed me life dramatically.  When I was diagnosed I found a lot of comfort in hanging out in online support groups.  There were people in these groups that knew exactly what I was going through and in the meat space world there was no one who could fully relate.

After four years of hanging out in online support groups I have discovered something that should have been obvious.  When you get a group of people together for any reason you will find there are differences from person to person and the anonymity offered by the internet will bring the asshole in everyone to the surface. I do not need anonymity to be an asshole, I have no problem being an asshole in person or over the internet.

After four years (yes I know I am starting this paragraph the same way, shut up I am sick) I have mellowed considerably and I do my best not to treat everything as though it were a formal debate.  I fail sometimes: especially when people are disregarding the scientific method but I am more and more tolerant as time goes on.

The next little bit is cliche but not all cliches are bullshit.  Being diagnosed with a rare disease that the cause is not known and that there is no treatment for let alone a cure you will begin to grieve.  Your life as you know it has ended and while not as dramatic as actually dying (I am assuming) it is none the less painful and plenty dramatic on its own.

When people grieve no matter what they are grieving for there is always that stage of denial.  It comes in many forms.  My denial came in the form of strength, I am so strong, so tough, so tempered by the world that I will impose my will over the disease and I will live my life how I want.  That was my denial (by the way I am mostly out of denial, mostly) and I have met many people along the way who I have denied in the same way I denied but there are different strokes for different folks.

The most common form of denial I see is that there is a cure but nobody has done the right research or the right research has not been funded or the right research was funded but was not followed up on or even conspiracy theories, big pharma has a cure but they will not give it to us because they want to make money off the sick.  Of course these are all wrong but the big pharma one is the hardest to explain to people why it is wrong because big pharma does want to make money.  The economics of sarcoidosis is there are not enough of us that are sick that it would make any sense to hold back a cure.  The publicity for finding a cure for a rare disease is worth much more than what is gained by giving people fifty year old generic drugs that do not really work that well.  One thing about denial, the truth will never be relevant, denial will carry on in the face of the truth!

Below is one of the response I wrote to a guy recently trying to explain to him why a six year old Italian study with 12 participants is not really relevant.  He became quite insistent that melatonin was the next big treatment for sarcoidosis.  This was my response and I thought I would share it here with all of you.  I think I was nice and thoughtful and hopefully made someone think but you know what?  Denial, it ain't just a river in Egypt.

Some of this might be a little out of context but I think it flows, if you have any questions leave me a comment.

Some studies are funded by large Pharma, not usually the ones for sarcoidosis they are usually from a government grant because the people in need of treatment for sarcoidosis is so small they have no interest in it because there is no money to be made. That is an unfortunate fact of having a rare disease. Publication bias applies to any small study regardless of the subject. I would recommend everyone read about publication bias. Separate issue, the specifics of the Italian study dealt with massive doses of melatonin and no one is probably taking that amount on a daily basis. The reason it is so crucial that studies about sarcoidosis include a large number of subjects is that sarcoidosis comes and goes on its own and with a small group it is hard to say. I have no dog in this fight and do not want conflict. The last person that I tried to help from this group was either trying to sell me something or was a little unhinged so I have no interest in being an altruist on a personal level at this point. I have a genuine interest in seeing people not experience the same trauma and pain that I have and so I will throw out some lessons I have learned. I spent four years with the help of some amazing resources and finances and lets not forget some amazing people. At the end of that four years having tried every treatment with the smallest amount of scientific evidence, what can I take away from that time? Go to National Jewish Medical Center in Denver or better go to the Cleveland Clinic, if you can not go to either of those facilities find the nearest university that has anyone doing any research and go see them. I can tell you after traveling this country and subscribing to medical journal after medical journal and following every single study that even made a little bit of sense, after all that I wish I had spent that time my wife. I have nothing against being aggressive, I have tried all the treatments that have been in favor and then almost as quickly fallen out of favor and if something is having positive results with patients at the Cleveland Clinic I will try that as well but in the meantime I can tell you from my perspective the time I spent chasing down a six year old Italian study on Melatonin and that the fact that I studied it over and over again to the point that I can recall all this off the cuff, that time and energy would have been better spent with my wife and that is just for me and take it with it is worth. I will not follow anymore comments on this thread, my wife will be home soon from work and I do not want spend time away from that. Do not spend all your time chasing the cure, do not forget to live. Thank you all and good night and I sincerely wish you well and I do not wish to argue, I know a lot of people will argue after I have stopped following (prednisone makes you angry) but please remember to live and maybe if you are at that point listen to some who has been there.

Tuesday, May 20, 2014

Who am I? The first ten changes because of being ill

I have addressed this questions several times over the last four years that I have been ill.

  1. First I was strong, I had persevered through many adversities in my life and this would be one more.  The best indicator of the future is the past and I had made it through many tough situations.
  2. Then I was tired.  I was tired of being strong, tired of being tired.  Fatigue as a word lacks so much of what I need to convey.  I would cry in the shower, I was so tired that lifting my arms or even just standing there were bringing me to my knees mentally and physically.  Pain has a large vocabulary and it is easy for everyone to relate to but if fatigue had a larger vocabulary I would write about it more than anything else, except maybe losing my mind, maybe. 
  3. Weakness, that was next and it was awful and it crushed me.  I had spent 38 or maybe 39 years of my life making sure I was strong and it turns out all the preparation and practice at being strong were for naught.
  4. Disappointed, how could I have not persevered, how could I be tired and weak?  The days of kilts and caber tosses were over.
  5. Depression followed shortly thereafter.  Depression became really tight with fatigue and they go out to eat a lot and they are getting fat, it is like they go to TGIF's and they just feed each other until they are so heavy they can barely move.  Some people should not be friends. 
  6. Next I was scared, who was going to see my weakness?  This was a concern because I have not always been a nice guy and it would be fair to say that there are a group of people that have met me and don't like me.  Ironically I have never really been afraid of dying, I had a come apart one day on Facebook but I have always known I was going to die.  That sounds really creepy, further exploration might be warranted.
  7. I got angry, this has always been part of me, when I am scared I get angry.  It is a defense mechanism to scare people off that I have used from an early age.  I have always been a large menacing physical specimen compared to my peers.  There were not a whole lot of people hanging around at this point. Most people are terrified of dying and do not want to be around anyone that is sick so the only people that were still around were the truly loyal, loving, salt of the earth, best kind of people on earth kind of people.  I would get angry with these people.  Not my finest hour.
  8. Loneliness would settle in after the anger dissipated. As stated above most people had long since ran inside to get out of the storm.  That left people that were devoted to me.  Even the most devoted people have their limits and they would check out and not be present.  Sometimes being with someone you are trying to drive away is lonelier than being alone.  The devoted stayed to make sure I was alive and tried to meet my needs.  That was hard, no one knew what my needs were especially me.  (sidenote: these people that stayed were still being strong long after I was not.)
  9. I fell down metaphorically and entered the state of despair, there is an exit before you get to Wendover on I-80 East. I am not repeating myself because despair and depression are not synonyms and being sick differentiated them for me. (sidenote: I knew what you were thinking)  Depression is very much like the dark cloud that is shown to represent it.  The cloud blocks out the sun and things get dark and hard to see.  Now despair that is a horse of a darker color, the color and consistency of pitch and it just keeps slowly pouring down on you.  Weighing you down, crushing you, suffocating you, dragging you straight to hell or something like that.  The important thing to remember is the distinction is not slight and not one of degrees, if I can go all SAT on you depression is to despair what darkness is to oblivion or what darkness is to the vacuum of the empty universe or maybe darkness is to bottomless pit, you get the idea, bad stuff.  In other words this is Sparta and I am falling down that pit.
  10. Broken and I as write the word I know that there are not words to do it justice of how broken I was.  Broken is the only word that applies but you must apply it to all the individual infinite things that make up a person.  The things that are known and the things that are unknown.  Right now I think I am failing to convey my brokenness but use your imagination and imagine something really broken.  I have no suggestions but I have faith in you.
Looking back over this list I think it might be weighted towards the downer side of things.  Unfortunately those first transitional states were really a downer, things sucked on a big time level and those first few years being sick were a serious downer.  

Were there some good things?

Did I get more empathy towards the suffering of others, sure.  How about a better appreciation of the wonderful people in my life, again sure, yes no brainer.  Did I become more humble and did that allow me to have a closer relationship with God and then from that a closer relationship with my wife, knock on wood yes.

All those things are true and they are wonderful and with Saint Thomas as my guide I know that my suffering does serve the greater good which is God's plan.  The pain clears your mind of all the useless shit that is up there.  Pain is like binoculars for the mind, you are able to see farther and more clearly than without it.  Pain provides a clarity that heretofore I had not experienced (I am really excited that I just used the word heretofore and I did not even try).

So ends the first installment of the list of who I have been since was diagnosed and it was quite the downer for you and me as well.  Hopefully there are enough hopeful and happy bits there at the end to keep you going.

Next week I am going to talk about my trip to the neurologist but I will not forget to finish this list, I will keep going no matter how many bullet points it takes to reach who I am today.

(I am aware there are a lot of Part 1's and not a lot of Part 2's and I am working to fix that)

Tuesday, May 13, 2014

The Marshall Protocol (Chasing the Cure) Part 3

I forgot to mention something very important in part 2 so this is a continuation of part 2 and then I will get to part 3.  The websites that purport to show the independent research are all run by Doctor Marshall, one of the groups that Doctor Marshall is the head of or a consultant to, and then finally patient advocacy blogs that are closely tied to Doctor Marshall.  The websites are not really independent and I should have made that clear, the studies they quote are often independent but the people doing the quoting are always either Doctor Marshall or someone affiliated with him, not my idea of independent.

Now that I have gotten that out of the way some other stuff.  (I am thinking I should let myself ramble more...also because when I asked if the shorter format was preferred to the long rambling format the answer was a resounding no)

Now the other thing I want to bring up about the Marshall Protocol is there constant quoting of themselves.  What I mean by that is there are several websites that contain very technical explanations of Doctors Marshall's theory of the disease operation of sarcoidosis (and more diseases as time goes on) and these websites will often say if you would like more information go to a different website.  That second website they want you to go to is also run by either Doctor Marshall, one of his corporations, or is affiliated with him in some other way.

Now I know this sounds like I am repeating myself but there is a difference.  The difference being you can have multiple websites for the same corporation, usually it is for an SEO technique called farming which I have personally done at a company I worked for.  You get like ten different websites that all are your corporation, each one of the ten represents a different landing page (different key word or search that has brought you to that website) and then they all link to your main page and main page links to all the "Farm" websites.  Google at one point gave a website a higher rank dependent on how many websites were linked to it and weighted each link by how highly ranked the linking website was.  I do not know how Google has changed there algorithm over time and I am not sure this is still the case but I bet it is in one way or the other.

I just reread that last paragraph and I apologize for the dated lecture on website SEO.  I know this whole series has been kind of dry but this is going to be the last post on Marshall Protocol barring some unforeseen event.

In the case of "Doctor" Marshall and his collection of affiliated websites it is not just that they do not mention that they are affiliated (sometimes run not just by affiliated organizations but even the same organization) it is that they will reference each other as an independent source to verify their theories and their treatments.  Now that is a lot of words there and I am not sure that I was clear so clarity hopefully will follow here: Website one will say something along the lines of sarcoidosis is caused by bacteria that do not have cell walls and they will direct you to website two.  In the direction to website two they will intimate that it is an independent source that has come to the exact same conclusion that sarcoidosis is caused by bacteria sans cell walls.

In other words they say hey look at these guys they agree with us and have come to the exact same conclusions as us and the only problem with that is they are all the same people.  In my opinion it is fraud to plead to authority to another website when you run the other website or someone directly affiliated with you runs that other website.

I started this series of posts based on a friend I made on Facebook.  He has a strong desire to find a cure for sarcoidosis, specifically his but I am sure he would be really happy if he found a cure for everyone with sarcoidosis.  He has been speaking with a lot of other people with sarcoidosis that also have a strong desire to find a cure sarcoidosis.  There is only one person that is offering to cure everyone with sarcoidosis, that person is Trevor Marshall.  No other person or group studying sarcoidosis says they are anywhere close to a cure.

The general consensus in the community of sarcoidosis researchers is that sarcoidosis is many different diseases that can not currently be distinguish from each other.   That does not phase the people pushing the Marshall Protocol, all though it should phase anyone looking at it objectively.  Think about it, at one time science could not distinguish between Valley Fever and Tuberculosis.  One is a bacteria and one is a fungus, the treatments are very different and here comes the punch line, in the past there were times when people could not tell the difference between Valley Fever, Tuberculosis and Sarcoidosis.  People with Valley Fever are still occasionally misdiagnosed with sarcoidosis.

It is hard to take a step back when you are suffering, when you can't breath, when the pain makes you vomit and the drugs literally drive you mad it is hard to take a step back but I would encourage everyone to just take a beat, a moment and just take a step back and think.  Whether you are an atheist or you believe in God this life we have in finite.  When I talk to people they often say what is the harm in trying the Marshall Protocol, in my opinion the harm is wasting the precious time we have to live.

People argue about Trevor Marshall's motives, whether he is a con artist or a true believer and to me that is irrelevant.  I would not waste my time on a protocol for treating a disease that for the most part is based on computer models.  Computer models have a value, more so in electrical engineering than medicine but either way you have to let go of the computer model and try it in real life so to speak and do a stringent, controlled, peer reviewed study on what your computer modes show.  He has had plenty of time to do that and he has not.  He has a lot of websites but no peer reviewed study, I do not like his priorities.

The same day I posted part 1 of this serious I ran across the following news story:


You will notice or maybe you will not notice but what I noticed is the reporter does not follow up with any substantive information from a doctor and does not present the viewer with a reputable source to get information from like the Cleveland Clinic Sarcoidosis Center of Excellence.  I am not making up the name and they do have a great website and they are the world leaders in the treatment of sarcoidosis.  You will notice that on the Cleveland Clinic website the Marshall Protocol is never mentioned and they don't talk about computer models a whole lot either.


Tuesday, May 6, 2014

The Marshall Protocol (Chasing the Cure) Part 2

There are a lot of websites that "support" the Marshall Protocol.  The first kind you are likely to run across is the "scientific" website that will point you to "independent research" that has finding that support the basis of the Marshall Protocol.  Let me address the parentheses in the room.  This research is usually independent, in fact so independent the people that conduct the research usually think that "Doctor" Marshall has misunderstood it.

They do not say he misinterpreted their studies.  Results of a study are always subject to interpretation.  The authors of several studies have said that Marshall did not understand their studies.  Let me translate that into some plain talk: either because he does not have the necessary background or the necessary intelligence or both he literally does not understand what the study is saying and all the inferences he makes are flawed do to his misunderstanding.

Now at this point a lot of bloggers would say the preceding has been my opinion.  The preceding is not just my opinion it is shared by people with medical degrees and backgrounds in the appropriate science.  I am almost reluctant to share the following link because this guy is articulate and pithy.  There are times when I am pithy and there are times when I am articulate but the times I am both are few and far between.  That being said here is the link:


There are a whole other group of websites but I will get to them in the next blog post.  Short format, thoughts?  I am always capable of rambling and don't you all doubt it.

Update this is also the beginning of part 3

I forgot to mention something very important in part 2 so this is a continuation of part 2 and then I will get to part 3.  The websites that purport to show the independent research are all run by Doctor Marshall, one of the groups that Doctor Marshall is the head of or a consultant to, and then finally patient advocacy blogs that are closely tied to Doctor Marshall.  The websites are not really independent and I should have made that clear, the studies they quote are often independent but the people doing the quoting are always either Doctor Marshall or someone affiliated with him, not my idea of independent.