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Sarah8793

Reading Dr. Green's Book And Feeling Angry

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Soooo, my question is why didn't my G.I. when he obviousy couldn't figure out what was wrong with me, suggest keeping a food journal.

Quite simply he wouldn't BELIEVE YOU.

If you take my earlier statement with a Dr. saying "It would hurt more if it was broken" then this illustrates this point. We all deal with pain at different levels ... I know I can control it ... just as an example I got stung by a jellyfish last week about 10 minutes before some other guy. I just went on snorkellng and ignored it .. the other guy ran screaming form the water .... I was looking for the shark (really) so I don't understand how a Dr. can look at my ankle and say "It would hurt more if it was broken"!

I have since learned Dr. need treting like small children to get any decent response. If he touches the ankle scream, pull away ... jump. I always assumed they needed to feel the bones .. they don't they are just trying to see how much it hurts since their ESP is temporarily suspended ... I mean presumably they all have ESP .. afterall they created the universe and everything in it so who am I to say how much it hurts ....

Last summer I had to have a small operation under my fingernail and the Dr's changed over in casualty so I ended up with another Dr. who thought the first one had aneathetisted it. After spending 30 mins depseratly looking through an Italian phrase book and dictionary with the other hand I finally managed to get him to give me the anaesthetic! Everytime I told him "it hurts" "io ho delore" he just smiled ... and it wasn't till I got to the point of asking if its possible to have an anaethetic it actually occured to him it might be nice! An idiot could have seen there wasn't any anaesthetic in since the finger wasn't all puffed up ...

But the point is Dr. ask you things but don't actually listen. They are just distracting you in the mostpart.

its like the GERD issue... they just dismiss it because you are not qualified (didn't spend 10 yrs learning to follow the service manual) to have an opinion over if it hurts, you have gas etc. etc.

In reality this is the reason for the biopsy.

"I feel better on the gluten-free diet" doesn't mean anything... the service manual says this is the test and that is the test!

There are good doctors, bad doctors, indifferent doctors, doctors that think they are gods.

Absolutely so bear in mind 50% of Dr's are below average!

Remember the other Dr.... had seen thousands of GI patients but never seen one with celiac disease? Someone said "nope you just misdiagnosed hundreds"

Remember Dr's bury thier mistakes ... and are pretty much protected given you need another member of the "we studied 10 yrs club" to testify against them and most Dr's misdagnose hundreds of patients everyday.

Putting your complete trust in the Dr. is like putting it in the walk/don't walk and not bothering to check the traffic.

NO, he just left me to be a prisoner of a drug. And what about the risks and side effects of taking acid uptake inhibitors for the rest of my life?? I am not a doctor basher either.

Bear in mind my GI is a close family friend ... and an outstanding humanist. You couldn't find a nicer guy... he recently took a leave of absense (from a well paid consultancy position) to work for free in Sri Lanka (after selling his second car to give to releif aid) and generous to a fault and i really like him as a person BUT ... would I put my life in his hands without questioning ... NO.

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Nope most Dr's have science backgrounds pre-med school and it takes 10 years to get the scientist out of them.

Dr's are not scientists, they are just mechanics, they need to realise this.

The treatment of diabetes is thanks to science, not doctors. Doctors are not scientists, the last scientist doctor (excepting Warren and Mitchel and one or two notable exceptions) was Lister.

The term medical science is an oxymoron, medical science is stuck back in the 19C* in the same position as physcis was when Kelvin decreed all that was left was to calcualte the last 6 significant figures.

When Dr's do act as scientists they are ridiculed and the drug companies stump up the cash to pay MD's to ridicule them.

You are using tools you don't even understand the physcis of and using microbiological science you can't understand. If you can't fix a relatively simple machine or understand a relatively simple machine like an MRI then what makes you think you know every cellular process of the human body?

I'm going to interject my own little bias here. I am a research scientist and I have been doing this for 20 years. I've worked with both MDs and PhDs. I have found that the average physician is not very intelligent, as I define the word. They learn to memorize series' of symptoms and events and assign a diagnosis to the best fit definition. They do not learn to think through a problem and consider alternative answers.

A doctor is not the mechanic, he's the guy in the parts store that knows a little bit about every car; enough to probably sell you the right parts in most situations, but not enough to help you if your cat gets her head stuck in the seat. Unfortunately the scientists, who are the mechanics, couldn't care less about healing someone. They just want to know why, not how to fix it.

Very rarely do practicing doctors try to act as scientists. They can't compete, it's not how they were trained. The ones that are capable of research usually stop practicing as physicians.

I think that we as a society have deified MDs, and it's the people with "unusual" ailments that pay the price.

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Just picked up the book at the library but haven't started it. I am also seeking a dr. but I want a good one who also keeps up with the latest and knows something about nutrition. Is this possible? LL

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Andrew,

I just couldn’t help replying either. I think I have read your posts in another forum stating a similar response. You are young and innocent and probably the age of my children. I too felt that way (that I knew more than someone else not in my profession) years ago but as I aged I realized my error. Arrogance is not a good quality for someone going into the medical field. What you need is compassion, curiosity and the ability to say, “I don’t know or I am not sure or I know someone else that may be able to help”.

I think you will agree that not all lawyers and accountants are brilliant and some are downright unethical, if you agree with that then you must agree the same for doctors and for any profession. You are going to have both the cream of the crop mixed with the so-so and the worst of the worst.

Next, I am sure you realize that the average person is privileged to all the information that you, also as a med student, can read. How many current published articles do you read a day? I sometimes read 10-20. Mostly I read articles related to the many conditions associated with Leukopenia, ITP, Diabetes, Myasthenia Gravis, Lupus, all the Neuromuscular Diseases, and in the last year added Celiac Disease. I am not a doctor or a nurse, but I am very interested in the blood and how it relates to our illness and also how the food we eat affects our health.

As a med student or doctor I am sure you will agree that many doctors only respond to blood work that is flagged…the reason for this is threefold…one they do have a patient overload so flagged items are what they look for…two, many times a doctor relies on his nurse to read the blood work and flag the flagged items, he then does a quick review and ok’s or does follow-up on flagged….three after one graduates, studying the latest in blood is not something they have time for so most doctors do not know or understand the latest info or changes that are currently happening with blood test ranges. They do not know that a low normal ferritin, B12 or vitamin D can be very telling of certain problems.

Or if they are flagged such as high MCV, which could mean:

Mean Corpuscular Volume (MCV)

The MCV relates to the average size of the red blood cell. MCV increase or decrease along with an increase or decrease in MCH is a significant finding for folic acid and/or B12 need (increase) or iron, copper or vitamin B6 need (decrease). MCV and MCH should always be viewed together.

Now, you would think that a hem/oncologist (1from a world renown clinic), primary doctor, gyn/onc, would recognize that I had many high MCVs and check for a B12 deficiency, but it was never addressed for 10 years even though I kept saying doctor I am so fatigued and I always showed an abnormal RBC morph

Do not get me wrong I am NOT bashing my doctors I like 95% of my doctors but if it were not for the internet I would be in very, very bad shape today.

My first problem that something major was happening was in March of 2003 when I had double vision. My B12 was tested then and not flagged as it was considered in the US as normal at 346…in Japan this is considered low! My symptoms increased rather quickly with the dx of axonal neuropathy by October.

Lucky for me I started posting and found quite a bit of info on B12 by November I was hospitalized in the cardiac step down floor with blood pressure/heart problems. At this point, I was sure all my problems were from a possible B12 deficiency but did not even know that I had been tested in March. I knew that I also needed my MMA and Homocysteine checked. I begged for these tests in the hospital….the nurses had never heard of the MMA test and barely knew the homocysteine test. My primary doctor was also unfamiliar with the MMA. Finally, the primary doctor ordered the MMA but not the homocysteine….why??? I would imagine since I had low triglycerides and low cholesterol that she would not think I could possibly have High homocysteine.

Well, my MMA was very low which is not consistent with a B12 deficiency as it should be high….but my primary doctor had no idea and thought this meant I needed B12. I had an appt with my Neuro and begged again for the homocysteine test and B12 because I still did not know I had had one(B12)…he couldn’t find it. He agreed and in late November my B12 had dropped to 206 which is low and my homocysteine was high. So, by waiting until my B12 was at what the US range considers is low, I was being severely damaged.

Because of my erratic BP, I was then sent in for autonomic testing and more neuromuscular testing at a renowned clinic.

Each time I brought a detailed paper with all tests, 2 pages of excel blood work chart and always mentioned that I had a severe problem with gas but was helped greatly with the B12. No one ever connected the dots. Although I had strong evidence of MG, they did an SFEMG improperly and stated I did not have this or any other neuromuscular problem. I was later diagnosed by an ophthalmologist with mild MG as I developed ptosis, my vision began to double again and muscle weakness began to increase. My neuro agrees that I probably have mild MG now. But having a major hospital say there is nothing wrong greatly effected my treatment for over a year.

When I finally found the Celiac connection, I asked my primary care doctor to test me for this disease. She said, “You are just looking for a disease and should take Prozac so you will gain 15 pounds!” I insisted stating I had 2 diabetic type one brothers and a history of gas problems. She very reluctantly tested and then sent me a letter stating I did not have Celiac as my test showed 2.9 and 20 was positive.

Now, had I not gone and picked up my lab reports one month later, I would never have known that:

1. She could not say I did not have Celiac as she only did the Gliadin tests

2. Somehow she must not have scrolled down on her computer as my AGA IgG was 2.9 but my AGA IgA was 37 with <20 positive

So, I go to my Neuro who thinks maybe I eat too much pasta but sends me to gastro.

Gastro thinks yes but fusses about doing endoscope and will not test vitamin D and other fat absorbing vitamins.

Gastro does tTG and EMA and both are very positive and says I don’t even need biopsy but I choose to do so which is also positive.

I email my neuro information, as he has never had a patient like me even though I am not that unusual.

I take info to my new primary and together we are learning although he knows I know more than him in the area of Celiac.

I like my doctors but they are not gods.

I diagnosed myself with the help of the internet and I diagnosed myself correctly with the help of my doctors.

Do I know everything…heck no that is why I work with my doctor. Does he know everything…heck no that is why he works with me. We make a good team.

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I'm going to interject my own little bias here. I am a research scientist and I have been doing this for 20 years. I've worked with both MDs and PhDs. I have found that the average physician is not very intelligent, as I define the word. They learn to memorize series' of symptoms and events and assign a diagnosis to the best fit definition. They do not learn to think through a problem and consider alternative answers.

Hmm look what happened to art with the invention of the camera .....I wonder what will happen to GI's with the growth of computers:D

A doctor is not the mechanic, he's the guy in the parts store that knows a little bit about every car; enough to probably sell you the right parts in most situations, but not enough to help you if your cat gets her head stuck in the seat. Unfortunately the scientists, who are the mechanics, couldn't care less about healing someone. They just want to know why, not how to fix it.
Fair point I was trying to be diplomatic.....

Very rarely do practicing doctors try to act as scientists. They can't compete, it's not how they were trained. The ones that are capable of research usually stop practicing as physicians.

I disagree here.. I seriously think that is what the 10 yrs at med school is for. Its basically just training to stop you acting like a scientist.

I had a discussion with a friends wife who is an internationally renounded consultant vascular surgeon. (and she also has some patents so she's not dumb) she's now in charge of testing labs for a product she invented and sold to Boston scientific but she finds the whole science aspect outside of her training despite being a honors science student. I think that is what 10 yrs of med school does....

Its like when I was sharing the MRI with research Dr's and not a single one had any idea how to maintain or fix it. I know what you mean about stupid ... or as you say "not very intellegent" and its almost like dealing with children. You explain something pretty fundamental and they just look at you like they never graduated from science 101... but this seems to be from my expectations I think. I expect to be able to speak to them as an equal but they seem to want to put themselves on another level.... a bit like the old Royalty who made a point of not being able to read and write.

I think that we as a society have deified MDs, and it's the people with "unusual" ailments that pay the price.

Yes or we allowed them to deify themselves or a mix.

Its like "I spent 10 yrs studying medicine .. I am an MD... I don't need to lower myself to your level by grubbing about understanding how things work... I repeat I'm an MD....

My Dr. gave me a chewing over for doing my own stitches .. so I asked her why.... "well your not trained"

its not rocket science ... i used a sterile wrapped needle and thread, i disinfected it and washed it out.. what would you have done differently? Well .... ???? the only difference is I would have a scar where you did your incompetent stitching and you can't see the stitches with a naked eye on any of mine.

The only real reason I need a Dr. is to order tests and prescribe drugs I can't buy over the counter.

My last visit cost me 40€ to go in and say give me a prescription for 3 months aerius (desloratidine), its spring! The whole thing is just a gravy train .... i want spectacles they have to give me an eye test if its more than 1yr in France or 2yrs UK.... Yeah sure my astigmatism has changed.... ???? Result I lost my reading glasses 3 yrs ago and I have to manage without because I refuse to pay to find out my astigmatism is still astigmatism.

The same goes for lots of things ... need a vaccination you need a nurse to do it? Seriously junkies can inject themselves while stoned !

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Moonmaiden,

it's just all one giant CONSPIRACY isn't it? Who else, besides the FDA, doctors and drug companies, do you think are in on it?

I'm sorry, was that comment really necessary?

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The worst thing any patient can do is to try to diagnose themselves, because 99% of the time they will get it wrong.

Did they really teach you this in medical school, or did that figure come from somewhere else?

Here's a stat for you. I read about it so long ago that I don't have a source, but I recall there was one at the time: 90-95% of illnesses will heal all by themselves with no medical intervention.

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This thread makes me sad on many levels...

This was a good book. I'd recommend it. I learned a lot of good info from it. To discount it because of the biopsy portion is a bit short-sighted.

My doctor can't know everything...but neither can I. We are both responsible for my continued good health.

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This was a good book. I'd recommend it. I learned a lot of good info from it. To discount it because of the biopsy portion is a bit short-sighted.

Okay, I'll look for it at the bookstore and peruse it. :)

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I agree- I own the book and have found it to be such a comprehensive source of valuable info. Now, I am someone who only had positive bloodwork and so obviously I disagree with the "gold standard." I carry it with me to doctor's visits for referral when they tell me incorrect info...I kindly set them straight! :D

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Okay maybe not, I've been glutened today.

Maybe it would be helpful for everyone to realize doctors are not Gods. I grew up understanding this implicitly with parents who questioned everyone and everything and cetainly never expected doctors to know all. All disciplines need a healthy respect for what is not known, maybe cannot be known. As an actor, a dancer and a human being I respect the fact no one can "know" all. We are wrong to ever have put doctors in this position, and, indeed, WE have put them in this position. Just as in ancient societies teachers are students and students teach teachers and on and on..., we only benefit from acknowledging that all is not known in any discipline. Perhaps it is not our lot as humans to know all. Perhaps we are NOT the most advanced, intelligent species on this planet. To me, this is self-evident. (I secretly believe amoebas (sp?!!) have us beat...) just thoughts.

lisa

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HAHA! Alright, who's read Hitchhiker's Guide to the Galaxy??? Between the mice and the dolphins, we're beat...especially since the answer is 42 :lol:

Yes, read it in high school, 400 million years ago. Between the mice and the dolphins and many other contenders, indeed.

lisa

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This thread makes me sad on many levels...

This was a good book. I'd recommend it. I learned a lot of good info from it. To discount it because of the biopsy portion is a bit short-sighted.

My doctor can't know everything...but neither can I. We are both responsible for my continued good health.

I think its kinda a two parter.

Yes the rest of the book might be good and certainly you can't expect every Dr. to know everything BUT this is one issue that really gets under many peoples skin.

My reasoning is celiac disease is so hard because its so rarely diagnosed and recognised. If the true rate of 1:100-1:200 was diagnosed then things would be significantly easier for us. I can base this on my recent trip to Italy where noone looked at me like I just sprouted horns and a tail when i asked for senza glutine ....

IMHO this is in now way independent of the biopsy as a gold gold standard for diagnosis.

No way will everyone be screened by biopsy ever, its too expensive and invasive and requires poisioning the patient.

Simialrly there are many pre-celiac disease (sensu strictu) in terms of full biopsy celaics excluded from various things like insurance or etc. not to mention added premiums for diagnosed etc. etc. WHY .. because we the diagnosed are taking the hit for the ones who are not and are 'wasting' the insurers money that WE pay premiums for.

If you had the same incidence of diagnosed celiac disease as Italy this would be VERY different. So what does Italy do.... it screens with blood tests on every child. Very little point in a biopsy at 3-4 yrs snce one of the only real benefits of the biopsy is to check for cancer or other damage and the kids don't need this unless they don't improve on a gluten-free diet.

Seriously, imagine walking to a resto and getting gluten-free beer or an ice-cream in a gluten-free conekmore or less anywhere.

The second objection is moral: The biopsy or aim for positive results is only achievable by deliberatly damaging a major organ which may repair or may never repair fully. I find this morally reprehensible inthe extreme. I once read a case study from a Norwegain Dr. who spent 7 years to get a positive biopsy from some poor kid and then had the poor taste to publish! 7 years of repeated gluten challenges... if I had my way this Dr. would not only be struck off but imprisoned for deliberate and repeatedly poisioning a patient to no end except HIS curiosity. If you read the article its sickening (I'll try and find it again) as it describes how the poor kid got iller and iller each challenge.. at any time the Dr could have stopped .. admitted it was non symptomatic and still said celiac but he didn't... he pushed on for 7 years.. 7 years that poor kid will NEVER have again.... and the aim of the study was to actually damage the kids intestine enough for positive biopsy. I have enough problems with smoking beagles but I honestly find this almost as sick as goebells experiments.

Secondly the biopsy totally dismisses the possibility of non intenstinal symptoms.... many of us know beyond any doubt we get other sysptoms that dissapear gluten-free.

So i think the biopsy part carries an overriding component many of us .... it could be an excellent book otherwise BUT this one sticking point I think many of us find we are unable accept because of the general misinformation it spreads. I honestly beleive that the biopsy gold standard is the single biggest hurdle to celiac research. Having an authoritive book support it is IMHO a bad thing regardless of the good done in the rest of the book....

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What is/are smoking beagles?

http://www.sass.sd83.bc.ca/students/projec...9612/w2reh3.htm

Its not that I am 100% animal testing, certinly not for something to cure cancer but this is the pointless sort of experiment... in a vain attempt to prove smoking doesn't cause respitory diseases.... I fail to see the point... Testing some kid for 7 yrs just to get a result of damaging his villi falls into the same category for me.

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Just finished reading the book. I think what everybody is really reacting to (me included) is the way he states that the biopsy is the "Gold Standard" - that's a pretty definite statement and it doesn't seem to allow for any other opinion. To me this is the typical "Dr. Arrogance" that I've come to detest. If he'd just put it out there as an "option", it wouldn't be so infuriating. moon.

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Just finished reading the book. I think what everybody is really reacting to (me included) is the way he states that the biopsy is the "Gold Standard" - that's a pretty definite statement and it doesn't seem to allow for any other opinion. To me this is the typical "Dr. Arrogance" that I've come to detest. If he'd just put it out there as an "option", it wouldn't be so infuriating. moon.

Yes, I am almost finished now and feel that other than the biopsy part, it is an excellent book. In fact I thought about starting a new thread to state the positive, because I didn't mean to give the impression that the book was bad. The biopsy part is in the beginning and once I got past that it was good.

Sarah

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You know, after thinking about this for a while, I wonder if one of the reasons he continues to advocate for a biopsy is political. If he were to lose credence with his fellow physicians I imagine it would make a lot of what he's trying to do more difficult.

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I think there's some meat to the idea that he'd lose respect if he didn't say it's the gold standard. And, let's be honest, right now, it is the gold standard. That doesn't mean it's the only way to do things.

I don't think we can totally discount all of his AMAZING RESEARCH just because of one sentance. He's done a lot for the celiac community, and we shouldn't forget that!

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As none of my doctors know as much about Celiac as I do, I found Dr. Green's book to be extremely helpful. I found out about my osteopenia due to the tests he recommends in the book. However, I will say that Dr. Cynthia Rudert of Atlanta (only 'expert' in Celiac in the SE) said that she never asks a patient to do a gluten challenge and make themselves sick just to get a positive biopsy. She just labels them 'gluten intolerant' in the file. She also spoke of Enterolabs methods and noted that she thinks they may be accepted as sound practices in the future and that Dr. Fines work is very interesting.

But US doctors in general do not practice medicine anymore. They are run by insurance companies and therefore the best doctors you will see here do not file insurance. That way, they are not bound by 'oh no we can't approve that test, blah blah'. My own pcp told me she was sure she could not get ins. to do a bone scan on me at only 42. So the GI ordered it and whalah it was done. Point being, my pcp didn't worry if I got it or not, she just thought there is no reason to ask because they will not cover you. Over the past five years I've been misdiagnosed each time I've had a problem, including walking phneumonia, shingles (with post therpetic neuralgia which is a complication you get when you don't get the anti-viral meds in timely manner), a severe sinus infection which the pcp, ER doc both missed and told me to take Bennadryll (eye doc figured it out - duh! That's what I told the other two docs......) and finally when my pcp didn't question my sudden onset of iron def. anemia a freind told me to question the situation and my derm. did too.

If I had listened to the doctors I've seen and not my own body I would have been hospitalized for the phneumonia, missed a big vacation due sinus infection, possibly caused myself harm as shingles pain is not anything one can live with long term, (my doc said here's a narcotic that's all there is but oops I needed a nerve med Neuronton!) and of course last but not least I would be eating gluten to this day since I was told there is no way I had Celiac. I had to push for the biopsy and the doc thought I was a hypochondriac I'm sure. Boy was his face red (I could feel it over the phone) when he called to say what the biopsy showed - classic case of Celiac.... Yea - we have a great medical establishment here as long as you have Cancer that is. Big money, tons of research for treatments but not a cure? Hmmmmmmmm.....interesting.

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I heard Dr. Fine lecture in San Diego a while back. He was wonderful! He said about 30% of the random people he's tested for IgA in the stool are positive but even more than 30% respond to a gluten-free diet. MD's are only catching the sickest of the sick and Dr. Fine is trying to catch people before they're hugely ill. It is going to take many years for this idea to penetrate the consciousness of the medical establishment but perhaps it will someday.

BTW: He addressed a question that comes up here often, does he ever have people test negative. Remember, most of his tests are people with symptoms or family members with symptoms, but he said 30% of those self-referred are negative.

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I heard Dr. Fine lecture in San Diego a while back. He was wonderful! He said about 30% of the random people he's tested for IgA in the stool are positive but even more than 30% respond to a gluten-free diet. MD's are only catching the sickest of the sick and Dr. Fine is trying to catch people before they're hugely ill. It is going to take many years for this idea to penetrate the consciousness of the medical establishment but perhaps it will someday.

BTW: He addressed a question that comes up here often, does he ever have people test negative. Remember, most of his tests are people with symptoms or family members with symptoms, but he said 30% of those self-referred are negative.

Thanks Nancy for posting this. These are some things I have been wondering about. :)

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