Water, water

I’ve been drinking Volvic water all week. It tastes just like….bottled water. I figure since I drink bottled water anyway (I know, I know it’s not good for Mother Earth to use bottled water), it might as well be the Volvic, since there’s a suggestion that the high silica content leaches out aluminum. Might as well be that brand.

BTW – the reason that I don’t use a metal reusable water bottle, is that the nature of my job requires me to travel all day long. Whether it’s walking all over the airport, loading motorcoaches in a parking lot, or taking guests to a restaurant, a metal water bottle would be left behind somewhere on day 1. Sorry.

Also, this week, I’ve been experimenting with the NSAID I’ve been taking (Meloxicam). I noticed that my ferritin and iron levels were tested two weeks apart, and there was a big jump in both numbers. The only thing that had changed was that this coincided with the two weeks pre-surgery, where I had stopped taking NSAIDS.  Hmm….non-steroidal anti-inflammatories are known to cause GI and stomach bleeding. Could the reason that the NSAIDS were making me feel better was that they were making me bleed enough to keep iron levels low?

Who knows? As I’m reminded constantly by doctors, I’m not a doctor. Though I do know how I feel. I’m definitely feeling the pain due to no NSAIDS, especially five days after the last phlebotomy.

The next one is first thing tomorrow, so I’m off to make sure I’m hydrated.

Glug Glug

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Hypocondriac or Medical fascination?

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Just a month ago, neurologist Dr.  Katz, went through my medical records to determine if the cause of my neuropathy was from the seven vaccines I was given in an eight month timespan. After paying him thousands of dollars for him to do this, he said my problems were “psychological in nature, and doctors were doing me a disservice by continuing to see me.” In other words a hypochondriac.  BTW – I’ve never met or spoken to this doctor, this was based on him looking at my endless amounts of medical records that are part of exhibits in my vaccine case.

That same week, Dr. Black gave me the results of lab work that he had ordered, confirming a diagnosis Iron Overload  -also known as hemochromatosis. The genetic test that he ordered was positive.  Within 20 minutes of me emailing these results to hepatologist, Dr. Todd Frederick, he responds with questions and a request to run more tests and research on liver tissue from a previous biopsy to determine my iron levels.

So who’s right? The doctor that called me a hypochrondriac and charged me a lot of money for that diagnosis? Or the one who has accepted the diagnosis and wants more answers.

I realize the Dr. Frederick is really more interested in how my liver works (or doesn’t) in the face of the problems that I’m having – he’s a researcher and a leader in developing new treatments. I just happen to be the body attached to that liver. Yet he’s one of the few doctors that understand that the little bit of tissue came from a liver that belongs to a human being. He’s respected me all along as a partner in this journey, and has always answered my questions with respect, and not been intimidated by the fact that a layperson can learn and speak their secret medical language. 

Hematologist, take two.

99 Bottles of blood full of iron, 99 bottles of iron. Take one out, dump it out, 98 bottles of blood.

Phlebotomy #2, hematologist #2. SSDD, and my friend Nancie would say. I was told to come 15 minutes before the appointment to fill out paperwork. Dr. Baron finally called me (and my husband) into his office and hour and 15 minutes after we arrived, just as i was getting ready to leave. I think he would have been relieved if I had done that. The receptionist told me he was reviewing my chart. Why did he not review this beforehand? How did he get through med school doing his homework at the last minute.

Once again, a doctor assumes that patients aren’t smart enough to speak their language. He was unwilling to look at any information I had to share, and assumed that whatever I had to offer was inferior information. “I have my own articles, thank you.”  What a jerk.I found out that during that hour that I was cooling my heels in the waiting room, he was emailing other doctors to get advice on how to take care of me.  Reassuring? Not.

Fortunately, the staff that did the phleb were nice and professional, and I’m glad that he doesn’t want to see me for 4 months. Right now I’m hoping that my levels will have stabilized by then, and I won’t have to give this arrogant jerk any more of my money or my time.  Bitter? Oh yea. I hate it when doctors think I’m stupid.

Can aluminum toxicity be cured by mineral water?

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Just watched an interesting lecture by Dr. Christopher Exley, a professor at Keele University in England. He presented his research at the Vaccine Safety Conference in 2011. You can view it here:

http://youtu.be/JKfbkeQyw84

He explains how aluminum can be toxic to the body, and though the technical details he discusses are far beyond the scope of the non-scientist, he is an articulate speaker.  It’s well worth spending the time to see how his research points to the problems of aluminum as adjuvant, and the role of silica as a chelation ingredient.

He proposes that drinking mineral water that is high in silica, such as the Volvic brand, toxic aluminum can be leeched out of a body. It’s worth a shot – I found that my local Mollie Stone’s market carries Volvic, so it’s easy enough to get.  I started today – I’ll let you know my experiences.

Why isn’t there a Zagat guide for doctors?

Why isn’t there a Zagat guide for doctors? Or a Michelin guide? Or even a Tripadvisor site. I know, there’s a whole bunch of “rate your doctor” sites, that essentially tell you nothing. Very few actually have any substantial ratings in amongst the clutter. Yelp tends to  have comments and review on some doctors and medical facilities, it’s almost become the default site for sussing out a doctor’s bedside manner and compatibility.  I know, I’ve dated more than a few doctors in my odyssey. Not dating-dating, but gone, seen and discarded a number of them as not being the “doctor for me.” I can’t even begin to tell you how that has impacted my family’s financial status.  So how, does one find out if the doctor that you’re going to see will be the one that actually figures out (or cares) what the heck is going on with you, or the one that labels you a hypochondriac after taking substantial amounts of money from you?

 

–        Recommendation by another doctor. Sometimes this works great, which is how I found my new primary care doctor. Dr. Black is very perceptive, and pinpointed my hemochromatosis after almost of five years of seeing other doctors. Dr. Robert Miller, a neurologist, recommended him to me.  When Dr. Black decided that I needed to be referred to a hematologist, he sent me to Dr. Knopf.  Dr. Black said he respected this guys expertise. I suspect that Dr. Black has never been to Dr.Knopf as patient. All I know is that doctors will never rat out one of their own, even if they’re horrible doctors, they’ll never admit that there’s an incompetent apple in the bushel. 

 

 

–        The hospital website with a list of their physicians. There’s usually a photo of the doctor here. Though doctors may judge you by the way you look, I’d like to think that looks shouldn’t count. Young? Old? Male? Female? Ethnic background? That’s about all you’ll get from the hospital’s website photo.

Of course, you’ll also find out where he/she went to the endless amounts of school and training. As a layperson, I really don’t know (or care) if there’s a difference between a doctor who went to UCSF or John Hopkins. The websites hardly give more information than that, other than letting me know that the receptionist speaks Tagalog. What I really want to know is, has this doctor ever diagnosed a patient with hemochromatosis? Have they seen a case of peripheral neuropathy caused by a vaccine before? Are they easy to talk to, or arrogant and detached?  Do they lie to patients instead of saying “I don’t know?”

Then there’s the scant selection of online rating sites. There are some with a slight amount of star ratings – based on “how easy is it to get an appointment” and “length of time to wait in waiting room.” Frankly, if it’s a really good doctor, and one that can help me, I can understand a wait to see him/her. If he’s a crappy doctor, it’s not worth waiting at any cost. These sites might as well have you rate the quality of the waiting room magazines, for all of the information they impart.

Then there’s sites like Yelp. Originally started to review restaurants, and the like, I’ve taken to venting my frustration with particularly bad medical experiences here.  Of course, you might be seeing this doc for a completely different reason than me, so the information might not be relevant. I do know that there is a business that has sprung up to “defend” a doctor’s reputation online. For a fee, they will neutralize the bad reviews by adding those “glowing” reviews – if you look closely enough, you can spot them. So, will Yelp give you an accurate view of the medical facility? Hard to tell. I can tell you that I do agree with the reviews for the surgery center at Seton Medical Center, and wished I had paid more heed to them, Although I had selected the doctor for my shoulder surgery, he had selected to do his surgeries there – it wasn’t my choice, really. If I had gone elsewhere, my finger wouldn’t be permanently damaged from the infiltrated IV that was done there. I did feel compelled to comment on this Yelp site about the surgery center – if only because I caught the surgery nurse not wearing gloves when putting my IV in, and the fact that the management at the hospital was unwilling to do anything about it.

Until there’s a transparent and more accurate way to find about a particular doctor’s talent and expertise, there will continue to be unhappy and frustrated patients and the system will never get any better. This is one of the reasons why I will continue to name the doctors and facilities that I have had personal experience with – good or bad in this blog. These are my own personal experiences, and it has cost me quite a lot in terms of money, time, and undiagnosed symptoms progressing while they’ve chosen to pass along the issue to someone else. By sharing my experiences, it’s my hope perhaps someone else can benefit and have a more positive experience in our dysfunctional medical system.

Last week, Dr. Knopf did call me back, and informed he always believes in giving patients a second chance and asked if we could “start again.” Somehow I got the impression that I was not the first patient he’s had this conversation with. Too bad he made it sound like I was the one at fault. I’m not buying it.

Patients aren’t smart enough to figure out whether I’m a good doctor.

Patients aren’t smart enough to figure out whether I’m a good doctor.

Great article in the NY Times about why there aren’t any good online review sites for doctors. When someone says “patients aren’t smart enough to figure out whether I’m a good doctor.”  Them’s fightin’ words.