Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Dr. Raj Uttamchandani's comments on Klimas / CFS

Discussion in 'General Treatment' started by PhoenixBurger, Jan 9, 2013.

  1. PhoenixBurger

    PhoenixBurger Senior Member

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    EDIT: This post has been edited significantly from the original, to convey my thoughts more accurately.

    -----------------------

    Had yet another pointless office visit with another doctor who is one of the higher ups in his field of study, and was (according to my primary care physician) actually trained by Dr. Nancy Klimas.

    I took some very toxic medications (AZT specifically, for prevention of HIV after exposure) back in February. These medications are known to cause damage to DNA in healthy cells. Known to cause damage to mitochondria in healthy cells. Known to cause myopathy in muscles. Known to cause lipid dysfunctions in healthy people. Yet for some reason the HIV doctors out there are hellbent on protecting this drug, or at the very least discouraging anyone who has long term side effects, from ever discussing the matter.

    Before February? I was a perfectly healthy person for many years. Since February? Neuromuscular problems, Chronic Fatigue, Fibromyalgia symptoms, Sensory disorders, Myopathy, Cramping, Fasciculations, etc. The change in my life is centered around the event of taking AZT and 3 other highly toxic medications for a full 30 days, yet HIV physicians refuse to discuss the matter. This experience was no different.

    After waiting an entire month to see this doctor, he literally spent 30 minutes dismissing every symptom I had, outright, without a single shred of investigation. He told me to "Get it out of my head" that the AZT or other HIV meds had any relevance to this. He disregarded all my comments about having had some personal success treating this as a Mitochondrial dysfunction, by a certain supplement regimen (actually published in a journal) that was given to those taking AZT long term. He stated that CFS and Fibro were most likely depression related, and self inflicted syndromes. I told him I had an appointment with Klimas / Ray coming soon, and his response was: "Want my opinion? Don't bother going". He said they are spending a lot of time trying to (insert sarcastic tone) "find some viral or bacterial cause, and they're not finding anything".

    Normally I would respect the confidentiality of the meeting but I am at my wits end with the utter joke that is the medical community. I don't know if there's some strange illuminati BS going on with these HIV medications, in that doctors know something the public doesn't, and they are trying to hide it? But I am tired of wasting my time, and my health, and more importantly - my intelligence - on utterly retarded conversations with people who are supposed to be highly intelligent and trained in their expertise.

    The astounding ignorance in relation to *any* new ideas or concepts. The willingness to write medical prescriptions but scoff at nutritional solutions. The higher up the doctor is, the less able to think outside the box they become.

    I told him i'd spoken firsthand with countless Health Care workers who reported ongoing problems after a 30 day course of HIV antiretroviral meds. People who had confirmed diagnoses of CIDP months later. Confirmed diagnoses of GBS. Confirmed diagnoses of Sarcoidosis. Chronic Fatigue. Myopathy. All centered around the ingestion of these toxic, poisonous medications used to treat HIV. He had the audacity to tell me it was all "Coincidence". All of their symptoms - a coincidence. "There are a lot of coincidences in medicine!" he said .... are you kidding me? This guy has a degree?

    I asked him - "You're an infectious disease doctor. Doesn't that encompass thousands of possible pathogens? Yet you haven't suggested a single possible cause to my symptoms. And you don't even want to check." He said he would go over my blood work and get back with me. He has never called me back.

    Doctors are an utter waste of my time, my intelligence, and my health. People on this forum know more than any physician I have ever met in my entire life. Klimas and Ray may be the one exception to that. And even then, I am not so sure.

    The internet is a new age of information sharing that is going to bury these physicians and their arrogance, and ignorance. And I am going to do my best to be a part of that movement. Sure there is a lot of bad information out there. But there is also good information, and highly intelligent individuals with HIGHER IQ's than many of these doctors, who now have access to all the studies and research - as well as thousands of others firsthand experience on communities like these. This is going to be the downfall of ignorance in medicine. Its already happening and I hope it continues.

    The only contribution this brilliant doctor had to my unexplained symtpoms was this:

    Doctor: "What do you do for work again?

    Me: "I make health web sites for people suffering from Medical Conditions online"

    Doctor: "Ahhhh .... THERES the problem!!!!" ....

    Implication of course being that I spend too much time online reading about health issues, therefore I am working myself up into a symptomatic frenzy. Because apparently I'd rather be doing that, than out living my life. The insulting aspect of this comment was bewildering to me. But I kept my polite smile and laughed at his stupidity.

    When I left his office, I told him: "So you basically have no idea whats going on with me. I'm convinced at this point that medical industry is still in the dark ages". He chuckled uncomfortably. Probably not sure if I was insulting him and his profession, or just expressing exhaustion with my situation. It was both.

    End of office visit. After a month of waiting. Waste of my time.
     
    leela likes this.
  2. alex3619

    alex3619 Senior Member

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    The Dark Ages is very apt for many, though not all. Many docs not only don't know stuff, they don't know they don't know stuff - the true Dark Age. Docs who do know they don't know stuff are not so difficult to deal with. Its like the Renaissance for them. Medicine has a long way to go, but to be fair the human body is not some simple machine some child can build with an absolete mechano set. Things are changing, they are learning, but its all too slow.
     
    leela likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    many doctors stop learning when they finish studying and become qualified docs, so if they finished their study in 1983 then thats the level they are at, 30 yrs behind, except for the latest antidepressant and cholesterol drugs that a drug rep trains them in. Not all docs but many????
     
  4. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    ukxmrv, heapsreal and justy like this.
  5. SickOfSickness

    SickOfSickness Senior Member

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    Most of us understand completely :(

    Thanks for posting this, so we can all avoid him.
     
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  6. robertpcx

    robertpcx

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    Hope this is the one. PB

    Poenixburger Hi,

    It seems the norm today for most doctors to scorn and reject supplements, I had a similar experience awhile ago and so I found myself searching the net for answers, I was experiencing severe withdrawal from gabapentin and my doctor knew I might experience withdrawal but did not give me this important piece of information. As I began to experience withdrawal it took me a while to make the connection that what I was experienceing was withdrawal, but in the mean time I thought I was dying I felt so bad.

    I realized that I was on my own so I began to scour the internet for answers, after searching a number of gabapentin withdrawal forums I finally came accrost an entry which stated they were useing useing a magnesium supplement to help ease the the withdrawal, I didn't have anything to loose for trying a little magnesium, well to make a long story short the magnesium worked and worked so well that it completely eliminated my withdrawal, it allso eliminated my depression and anxiety.

    Naturally I was curious now about magnesium, it turns out that there was something in the research on magnesium about Fibro that magnesium supplement may be able to help you, if you are in the mood for some alternative medicine, I am not a doctor I am mearly relating my own personal experience to you, a good Magnesium supplement one I would recomend to you is called ReMag which is patented and is 100% absorbed which means no diarea. Google (DR. Carolyn Dean Remag) and you will find the ReMag there. While on her web sight you might look around there is a lot info about magnesium on her web sight.
     
  7. tyson oberle

    tyson oberle Senior Member

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    Like Phoenixburger said, we are in the dark ages. Solving this condition is not going to be easy and we may never succeed in our lifetimes. We are probably better off just using this forum to learn and using doctors who are willing to be guided by us as to what tests need to be run, what therapies need to be tried, etc.
     
  8. snowathlete

    snowathlete

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    Hear this sort of report all the time unfortunately but that doesn't make any such case any less shocking. It is arrogance and close mindedness.

    One day, maybe not too far away, we will have enough evidence to put such doctors to shame and we can remind them of what they said.
     
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  9. AbbyDear

    AbbyDear

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    Sorry phoenixburger, I can identify with the situation/fustration... it's been over 13 years and many doctors for me and i still do not have a valid diagnosis, no help for symptoms (actually gotten worse)... what's worse i lost job due to this and worry i can not get support without doc support... they are in a possition of responsibility, and I think need to take on that responsibility as lives are destoyed. Anyhow, you are not alone, i just hope you can find some help/solution.
     
  10. Esther12

    Esther12 Senior Member

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    To be fair, there isn't much good evidence about the value of a lot of treatments for CFS, and I'm dubious about them too.

    The "THERES the problem!!!!" discovery is pretty worrying though.

    Sadly it seems that a lot of doctors feel a need to act as if they have a better understanding of things than they do.
     
  11. PhoenixBurger

    PhoenixBurger Senior Member

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    All the more reason why they shouldn't sit there and scoff at things without even checking. All the more reason why they should be doing exhaustive testing, until a problem is found, followed by a referral to Mayo - all within a month's time period. The days of checking basic bloodwork and sending a person home 50 times until they come back 51 times saying "You didn't fix this" should end forever.

    My car is a far more simple machine than my body. Yet my car has 3 expert techs looking at it for hours on end. They hook my car up to diagnostic machines immediately, not after 3 months of suffering and referrals. They check my car from top to bottom, have a welcoming team, a Service Advisor liaison, and a computer system where everything is documented. My car isn't seen for 15 minutes. Its often kept overnight. Sometimes for many days, until the problem is solved. On the first visit.

    What does my body get? A 30 minute discussion. After a month of waiting. And not a single test run. A bunch of utter nonsense that he knows what its not, when he hasn't even checked for what it may be. Then he sends me home with not a single suggestion offered. Not a single solution even looked into.

    How the hell is that practicing medicine????????????????????

    The human body is more complex. Therefore the time and attention given to it... should be proportionally larger than the time and attention my car gets. Hell, I'd be happy with an equivalent level of time, attention, experts, and diagnostics. It would be astronomically more than they currently do.

    The people on this forum know more about this condition (and associated conditions) than *any* doctor I have ever encountered. All experts in their field. All specialists. Neurologists. Infectious Disease. None them can even touch the tip of the iceberg compared to the topics I see being discussed here.

    This is why I make health sites for a living. Increasing the flow of information. Empowering the public to research themselves.

    The only difference between an arrogant Specialist with an MD, and an average Joe on this forum with an IQ of 140? The average Joe is probably more intelligent, has access to all the exact same information, and actually reads it. What do doctors have that a highly intelligent Software Developer here doesn't have? Is there something inherently unique about a medical degree, that the general public with proper intelligence levels can't become as educated, if not more educated than any doctor? The only thing Doctors have that we don't have, is a visual assessment of individuals with actual disease in process. And quite honestly, all this does is ruin their ability to help everyone else. They're so used to seeing decrepit 80 year olds with ALS that they can't fathom a 38 year old who actually went to the gym yesterday might be dealing with some sort of disease. They have no concept of "prevention" and are unable to identify "beginning stages" of anything. Forget it if your bloodwork comes back normal. You might as well go home and watch TV. In fact don't even make another appointment. Just wait 5 years until you're bedridden and hope to God that your CBC comes back abnormal at that point. Forget the fact that at that point, you're disabled. And might have been able to do something to prevent it.

    Screw doctors. Power to the public. Via information and PubMed.

    PB
     
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  12. robertpcx

    robertpcx

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    Have you seen the Movie .(The Marketing of Madness)? it is rather long but it an expose on Doctors and the Pharmaceuticle industry.
     
    liquid sky likes this.
  13. liquid sky

    liquid sky Senior Member

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    That was interesting, robert. I feel really sorry for all the children these days who do not know what it is like to have a clear mind. I can't imagine being a child on amphetamines or anti-psychotics.

    I get really upset that doctors seem to be satisfied telling you what you DON'T have, rather than trying to find out what you DO have. Then, if you get a diagnosis of some elusive, poorly understood "condition", they blame everything on that condition. I think going to the doctor is the most depressing thing I have to do.
     
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  14. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Hi PB, sorry you are oging through this. I can relate.

    Mayo Clinic cannot help us, just so you know.They are (bio)psychosocial school. You will get some form of CBT/mindfulness training, nutrition advice, sleep hygiene advice, and recommendation to exercise, if they think you have CFS or FM. Estimating by the DVDs they send out, reports from others, etc. (I have not been).
     
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  15. Sushi

    Sushi Senior Member Albuquerque

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    PhoenixBurger

    I agree with Willow--the Mayo Clinic is about the last place to consider.

    Sushi
     
    WillowJ likes this.
  16. PhoenixBurger

    PhoenixBurger Senior Member

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    I guess my point should have been: What Mayo / Cleveland Clinic does during the first visit is what every doctor in the country should do on the first visit.
     
  17. PhoenixBurger

    PhoenixBurger Senior Member

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    Did you get my private message robertpcx
     
  18. Sushi

    Sushi Senior Member Albuquerque

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    Hi,

    I think what Mayo/Cleveland Clinic does at the first visit is probably great if you don't have ME/CFS. If you do, it hasn't been at all helpful for most of the patients who have gone there--they don't do the right tests and they miss most of things relevant to this illness because they are using a mainstream model that doesn't fit us.

    They could help eliminate possible other diagnoses, but have just been a psychological and money drain for patients who really do have this illness. One friend dropped about $25,000 in a week at Mayo, they missed the significance of basic things like extremely low sodium and told her to exercise and she would be fine. This was someone who passed out every time she stood up, had gone from a university professor to someone who could not find her way home from a store two blocks from her home.

    Sushi
     
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  19. alex3619

    alex3619 Senior Member

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    Hi PB, the rise of the fifth estate (internet) is one of the very few positive trends in Western civilization. Its potentially compensating for a decline of the fourth estate (journalistic media), and may help keep government and institutions honest.

    The current online data availability is often still pathetic though. It is critical to general understanding that science, and in particular medical science, embrace open publishing. Abstracts only tell you something is interesting, the important stuff is often buried in the paper.

    Most doctors receive minimal training in biochemistry, nutrition or other specialist topics. Docs are generalists. A specialist is only more knowledgable in a very small field, and even then they will not know everything.

    The basis of a democracy is an informed and involved public.

    I have long said that if you have something unusual wrong with you, find a doctor who has a special interest in that topic, and preferably have had that problem themselves. No other doctor will be close to up to date on uncommon problems.

    So that leaves patients. We are the missing piece in this puzzle. Just as an informed public is critical to a democracy, which means we need good information sources, so is it critical to other important areas including medical treatment. If doctors don't have the time and resources to be up to date, and they patently don't, then a reponsible patient will take steps to learn as much as they can themselves. and a responsible medical system will try to support that. Its that last bit that is lacking. There is a disconnect between the information age and most doctors. They still think they are the gatekeepers, and are still treated as the gatekeepers with privilege under law. The systems is broken, typically not transparent and typically not accountable.

    Bye, Alex
     
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  20. robertpcx

    robertpcx

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    I got your message thanks, PB did I edit the right post for you?
     

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