What Could Be

The exciting world I inhabited for decades is one of infinite possibilities for discoveries that will ultimately change us forever. The links below are brief entries into the culture of pure research. The gargantuan machines are in reality 6-10 story high subatomic particle detectors....These are basically giant 'cameras', each one requiring international collaborations with at least 2000 scientists, engineers and mechanical designers. It is a heated, frenzied, exciting world of ceaseless quests to study as closely as possible and precisely as possible what is actually happening.

Because I come from this culture that holds nothing back in SEARCHING FOR TRUE DATA using massive human and technological collaberations, I am unfailingly disturbed by the prevailing medical culture for-profit mindset of 'it if doesn't fit in my tiny cube of diagnostics, it doesn't exist', nor is there an imperative to acknowlege in any way the entire picture or proceed in new directions. Medical inertia is not only sanctioned, it is financially rewarded here.
Medical culture actively TURNS AWAY from inconvenient facts coming from patient stories and histories.

I lie awake in the wee hours when my damaged heart is galloping painfully and sail away into imagining the enormous leaps in advances of human disease and treatment technology if the same astounding research mission focus and energy were applied in medical culture. Where are the visionaries in medicine? Where is the depth?

When I walk into yet another drab dusty doctor exam room, knowing that all the will be coming through the door soon is a person in a white coat with possibly a stethoscope and that's it, I cannot 'unknow' what I know about modern medicine. That is it dreadfully lacking in the hallmarks of rigorous progressive science....constant progression, universal sharing of all new data and information, no limits on knowlege sharing, no squashing or hiding of outcomes. The dead air in the stuffy exam room is an exact duplicate of the overall profession....crude, fiercely territorial, profit oriented in a patient predatory way and sloppy in ways that endanger human life daily, cherry picking symtoms that can be billed for and titanic inertia towards advancing change.

I'm afraid I am never going to be able to gracefully transition from the phenominal high energy physics plane to the deadly dull spaces medicine currently inhabits. I won't be meeting any pioneering spirits here. Just drones who dully recite what they learned decades past and evidence no intention of updating. The fact they may have nothing curative or even helpful to offer fazes them not at all.

To put it another way, it is like being offered a NASA space shuttle or being handed a space shuttle toy pencil sharpener. Which of these options has the best chance of getting me into space? I am unable to pretend I don't know the difference.

The visionary world of searching out the mysteries of our universe: (2nd link features Dr. Brian Cox, Univ. of Manchester, UK, at CERN)

http://www.youtube.com/watch?v=rgLdIly2Xtw&feature=related

http://www.youtube.com/watch?v=s9XotvwgnaY&feature=related

By grace5
Posted August 19, 2008 at 3:46 pm

Hi Jaynie,

You are so spot on. What other profession could get away with it? Human beings are disposable and regularly replaced, maybe that's the bottom line, where's the profit?
Grace x

By martzj
Posted August 19, 2008 at 6:44 pm

Hi Grace,

I posted this as a Journal entry because it is my personal perspective. I should emphasize I don't have the slightest problem with professionals earning a good living. What I have huge problems with are the escalating human ethics slippages that are being pushed aside as US medical culture markets itself as being able to offer 'science-based' medicine....When it mostly still cannot.

Problems and dangers to patients are greatly compounded by the fact there is no national all-inclusive health care here so unless bright new incoming doctors have the $ to start their own practice they must go into whatever system preexisting hospital conglomerates have already bullied into place. Doctors do not run US hospitals....they are run by beaurocrats/privately owned and the insurance industry. Doctors themselves often don't know what chaos it is to be a patient until they or their own family member becomes a patient......

Jaynie

By lkay
Posted August 19, 2008 at 8:24 pm

One word Jaynie -
Thanks!

Oh I can't stop with one word and you know it. You make me mourn for the things we could have in our medical care but don't, and probably never will see in our life time.

What a thoughtful and thought provoking journal.

My heartfelt thanks,
Laura

By Kennarina
Posted August 19, 2008 at 9:56 pm

Well, my darling Jaynie, I can tell how frustrated, disillusioned, angry, worn down, and 'fed up' you are by this relentlessly challenging cardiac mountain you have been forced to climb.

While you are absolutely correct in saying that you won't be running into 'heated, frenzied, exciting' researchers in those 'drab dusty doctor's exam rooms', it doesn't necessarily mean that exciting medical research is not happening.

Since my heart attack in May, I have been 'researching research' as part of my new All Things Cardiac obsession - and I must say that in spite of many less-than-ideal clinical experiences described on these posts, I do feel encouraged - and dare I say excited!? - by what I've learned about current medical research being done by cardiologists and researchers who are every bit as brilliant, dedicated and driven as those in the wonderful world of particle acceleration.

For example, the University of Toronto's cardiac research at Sunnybrook Hospital so far has resulted in many innovations like oxygen-sensitive magnetic resonance imaging tools. Exciting? Yes! Dr. Kathryn King of the University of Calgary is doing promising research with cardiovascular nurses working on women's recovery from sternotomy (the 'cracking' of the sternum during CABG surgery). Exciting? I'd say so! Cardiac researchers at the London Health Sciences Centre are pioneering minimally invasive and robotic heart surgery. Exciting? You bet! Closer to home, turns out that the very cardiologist who performed my own emergency angioplasty has pioneered a number of innovative cath lab procedures with his research team, their work published in The American Journal of Cardiology among many others. I'd say that is pretty darned exciting, too!

While I'm citing Canadian research examples because I happen to live here, the U.S. does by far the lion's share of cutting edge cardiac research - Mayo Clinic's cardiovascular biomarkers, transplantation and gene therapy research for example, or Columbia University's annual Transcatheter Cardiovascular Therapeutics Symposium that attracts 10,000 scientists from over 80 countries each year. To describe these 10,000 men and women dismissively as 'drones' seems unfair and unfounded.

As you may recall, I work in a teaching hospital where research and education are hallmarks of our mission. Our medical research teams work tirelessly with committed partners such as universities, government funders, national foundations and 'cause' organizations like the Cancer Agency. Our own groundbreaking research on management of severe pain at the end of life has literally changed the way medicine is practised in the most profound way imaginable. I can set your mind at ease that these teams follow the same rigorous research methodology required by all credible scientific research and peer-reviewed medical publications.

<< ..."Where are the visionaries in medicine?...">> you ask. I can tell you where they are - I work beside them every day. And I bet they'd be justifiably offended to be described as working in the "deadly dull space that medicine currently inhabits..."

Sigh.... the world of medicine ain't perfect, and never will be. But I know that I would not be alive today had it not been for medical researchers who 20+ years ago developed the clinical procedures that saved my life on May 6th. These procedures are now performed around the world in most modern hospital settings - yes, even those run by bureaucrats and conglomerates. Procedures continue to improve and change, as new medical research is proposed, approved, funded, initiated, published, and shared.

Pretty exciting, indeed!!!

By martzj
Posted August 19, 2008 at 10:57 pm

Kenna,

You do live in an exciting medical environment.... a teaching hospital. Thanks for the information on Canadian research...fascinating stuff.

As for 'drones', I'm afraid those are the only level of US practitioners I have met. All this wonderful research hasn't filtered down extensively to date. I continue to be concerned that at the huge disparities in face-to-face diagnostic treatments which place women in the US in harms way.

take care,
Jaynie

By arizona1
Posted August 20, 2008 at 11:07 am

There are many exciting things out there that haven't been accepted by conventional medicine, as of yet. My CFS doctor ( an internist who specializes in CFS)says most doctors are 20 years behind
the research. This applies to medical schools as well. So how does this affect CFS??? This especially affects the lives of the CFS sufferer. Some still believe it is the result of depression and just prescribe antidepressants. Nothing could be further than the truth and does more harm than good. Do you know what it was like to be in a hospital and have to define my CFS issues to the medical staff who didn't have a clue when I had my heart attack. Either did the endocrinolgy department and they are critical to the CFS situation. They just shrugged and put their hands up and said, "We'll let you deal with your own doctor because we are clueless. I had to agree because at the time of my MI, I was not up to educating people that should already know. I don't have a medical degree, but I researched my butt off until I found answers for my CFS issues. Here I am in a teaching hospital and they don't get it yet. Talk about frustration. My CFS doc says, " When you are ahead of your time, don't expect to be accepted" How much damage and continuation of suffering goes on because knowledge hasn't come as far as it should have. What is being done to educate docs on the latest and greatest. Very little!!

Thanks for your great post,
Kathi

By martzj
Posted August 20, 2008 at 2:02 pm

Hi Kathi,

Don't you have brother who is an MD? He must be quite frustrated that he is unable to help you. I hear your frustration with the whole CFS thing. You have been dealing with this for many years. I think I mentioned in an earlier post that I started at CFS support group in my area when I was diagnosed with CFS in 1992, then Fibromyalgia. Except for the trigger points, the two syndromes are nearly identical. I was astonished that the immunologist who diagnosed CFS had no clues, no cure, no nothing....THe Center for Disease Control has it listed as a rare disorder I think...haven't checked that in a long time. It felt quite bizarre to be told I had CFS and Fibromyalgia, but the doctors would not back up their own diagnoses when I became too sick and weakened to work sometimes. Guess I will never know if this was actually smaller heart attacks or CFS. Which came first, the chicken or the egg? (smile)

I'm certainly neither a doctor nor scientist, just checking out leads that appear or possible connections that pop into my head. Wish I had something to share that was helpful to you but I couldn't take anti-depressants either, and that was all doctors offered at the time. Vitamin B shots didn't work either. I long ago began shifting my focus from wishing I could just feel normal again, even for an hour, to....what would I like to accomplish at this time...Sometimes I close my eyes and wait quietly for a sense of which direction to go. It is a gently process and it helps me move through many moments I could never have gotten through in my younger days. My will is much stronger, clearer, focused now...I've let go of a lot of silly energy wasting drama.

The last time I was browsing CFS research, it appeared no one was having success pinning down the actual mechanisms involved....maybe they are too subtle, to micro-whatever to been seen in toto at this time.

Take good care today,
Jaynie

By arizona1
Posted August 20, 2008 at 5:00 pm

Yes, Jaynie, I have an MD brother. Until I did the work regarding my illness, my brother didn't have a clue. He was one of the antidepressant docs. However, in his defense, there are 30% of CFS /Fibro patients that benefit from the use of antidepressants, if they are used in conjunction with other protocol. The antidepressant is only a minute part of what is wrong in CFS/ FIBRO.

Can you believe that 20 years ago CFS/Fibro was initially recognized by the CDC and doctors still are not informed concerning this illness. They are using antidepressants as their main protocol. It is hideous to think medicine has not kept up with research.

We are currently working with Dr. Jacob Teitelbaum who wrote " From Fatigued to Fantastic" He has been featured on Oprah radio with Dr. Mehemt Oz. and is world famous in the field. I met him at a seminar and introduced him to my brother after researching and reading his books. It took my brother awhile to come around, because the protocol is so different than what he was used to. It is throwing your whole belief system out the window and buying into an out of the box way of thinking. Hard to do for many, including my brother. Dr. Teitelbaum acts as a consultant on my case because of what happened to me with the CFS specialist. He has a heart for the hurting and felt bad about what happened to me in the hands of someone who should know better. He is retired and living in Hawaii now.

I went to the CFS specialist before my brother totally
hopped on board with the CFS protocol. He felt uncomfortable with some of the protocol and suggested I go to someone who specialized. Understandably so. Unfotunately, I ended up with a CFS specialist that knew less than I did. I researched so much on my own and got myself to a certain point that he didn't think I was sick. You know .... your good looking blond theory. HAHA ...He basically told me to go back to work, and I had been sicker seeing him, than before I stepped on his doorstep.I can't take medications and he prescribed several.

Dr. Teitelbaum had told me in 2006 that you don't go back to work unless you feel ready for it. He called it that yippee feeling. Unfortunately I pushed myself since 2004 and didn't quit work until 2007. It didn't work trying to get better my way, so I knew I had to stop working. Getting back to feeling great and ready for work wasn't happening quickly. However, the specialist didn't get it. My heart attack came a week later with an overdose of thyroid medication.

Dr. T believes there are 7 areas of the body that must be treated simultaneously in CFS /Fibro. These include mitochondrial enhancement, thyroid issues, adrenals, cadidiasis, hormones, sleep issues, gastrointestinal issues ,possible underlying viral infections and immune system difficulties. . The hypothalamus -pituitary axis breaks down in CFS/ FIBRO. They are the circuit breakers for your body and they stop working normally until the body can recoop. The adrenals work non stop when the hypothalmus-pituitary axis is messed up. My adrenals weren't totally gone as in Addison's Disease, but they were damaged. Feeling good enough to work, after pushing for so long hurt more than helped the situation.

These are the statistics:
20% of people totally recover
60% must change their lifestyle , but will enjoy a fairly normal life
20% will be house/bed/couch bound

You have to work within an energy envelope to regain your health or you suffer the consequences. Some days I will do too much and be down for the next several days. It happens all the time. I can't exercise and suffer if I do.

The B-12 shots helped me immensely. Dr. Martin Pall theorizes it is because of the build up of nitric oxide, peryoxynitrite and superoxide in the body. The B-12 shots scavenge for these in the body. The shots were a life saver to get me off the couch three summer vacations. He believes this is applicable in CFS, Fibro, Chemical Senistivities and Gulf War Syndrome. I told him I was a poster child for this theory because after my heart attack, I stopped the shots and I wasn't able to get out of bed until I started them again.

As you said there are many many theories on the causes of CFS/ Fibro. I believe this is because different areas may break down in different people, but result in similar symptoms. There is little money going into CFS/Fibro research. It is political and need I say more. However there are groups vigorously fighting for change to happen. I keep up on all the latest information and research as much as possible. At present I am too weak to take much of an active role in anything other than researching and talking here.

Lots of love,
Kathi

By martzj
Posted August 20, 2008 at 9:16 pm

Wow Kathi,

What an interesting story! So complicated for so long. You certainly have been doing everything you can all along the way.

"Dr. T believes there are 7 areas of the body that must be treated simultaneously in CFS /Fibro. These include mitochondrial enhancement, thyroid issues, adrenals, cadidiasis, hormones, sleep issues, gastrointestinal issues ,possible underlying viral infections and immune system difficulties. . The hypothalamus -pituitary axis breaks down in CFS/ FIBRO. They are the circuit breakers for your body and they stop working normally until the body can recoop. The adrenals work non stop when the hypothalmus-pituitary axis is messed up. My adrenals weren't totally gone as in Addison's Disease, but they were damaged. "

I've been looking into the adrenal fatigue and hypothalamus connections this week since I've been so completely exhausted by a few nitro sublinguals. Just have zero recovery left now....takes me forever to recover and this nitro deep fatigue has been quite extreme. Maybe it reactivated the CFS mechanisms....

How did your adrenal damage get discovered/measured? Scans?

Your reach out to Silent Sisters has just been a phenominal success Kathi! Wonderful of you to do that.

Take care,
Jaynie

By arizona1
Posted August 20, 2008 at 10:31 pm

I have consulted with several doctors on how adrenal testing is best accomplished. There are differing opinions. The CFS specialist did blood testing by Qwest Labs which was done in the PM. Dr. Teitelbaum recommends a cortisol test done in the am, but acknowledges blood testing is the best we have, but not always accurate. I am in a hotel and the name of it is escaping me at the moment. Dr. T. I will get it for you if you would like when I get home.

The other way of testing adrenal function is saliva testing. It is done 4 times throughout the day. 7-8 AM 11 -12 , 4-5 PM and 11-12PM I had this done just to compare the results. Supposedly many feel saliva testing is by far more accurate than blood testing. It too indicated there were problems with my adrenal glands. In addition, it also indicated that my immune system was severely depressed because of the extended problems with my adrenal glands. This is what the blood testing indicated also. I found problems with both tests because the saliva test was done shortly after the HA and I believe the heart meds were altering the morning profile.

I had a severe reaction to the medication the CFS specialist gave me for my adrenal glands. I took cortef and while it worked for 2 days, it ended up making me extremely ill. I do better with licorice root and adrenal
concentrates. If you would like to know more, I would be happy to speak with you or email more information. There is naturopath in Quakertown PA that uses a specific herb for each level of adrenal functioning based on the saliva testing. Dr. George Posenecker has a wonderful book called Chronic Fatigue Unmasked 2000 which is excellent. It discusses adrenal fucntioning in depth. He was the head of the Quakertown Clinic back in the 60's and 70's. Despite not suffering from CFS, he had an uncanny ability to understand the suffering of his patients.

There is a subgroup of CFS people that cannot take meds. I am one of those. Are you too??? I had been taking armour thyroid for several years and developed a severe reaction to it over time. I was getting severe neck pain due to fillers. This was discovered by Dr. T and we moved to a bioidentical thyroid that does not contain fillers. No problem after that. Could you have developed a reaction to the nitro?? I can relate to the difficulty recovering from deep deep fatigue. If you would like me to ask Dr. T, this man is brilliant and I would be happy to do so. He is an encylcopedic compendium of the latest information on any and every subject. Yet he is completely humble in every sense of the word.

Jaynie, I feel for you ..... Nitro gave me an incredible whopper of a headache when in the emergency cath lab. I could not even move my head, it hurt so bad. i begged for something to ease the pain midst a stream of tears. I don't have to take it, nor do I desire to do so ever again. Is it possible the nitro is not suited to your body any longer? I don' t know, but it may be something to check out.

Whatever you would like to know or if I can help in any way please let me know. It really hurts to hear how much difficulty you are having with health issues
lately. However,you are an incredible inspiration to this site in the way you deal with those problems though.

Hugs,
Kathi

12 replies

Add to the discussion

Search

Join

Connect

You