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Think This Doctor Is A Bit Unreasonable. What Do You All Think? (Long)


LindaJoy
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Hi, everyone. I'm feeling a bit better emotionally. Thank you all for your support and encouragement.

Recently, I contacted an environmental biotoxin specialist, to see if maybe my health issues are being caused by an underlying toxin problem. I watched a couple of videos on YouTube by this doctor, and he seemed really down to earth, nice, compassionate, but knowledgeable. His office sent a packet for me to fill out and get back to them, in order to set up an appointment. All seemed to be going well and I was feeling a bit hopeful again, when the packet arrived. After looking at it, I thought, "There is no way..."

You all know I've been seen by doctors all over the country, so I thought I was familiar with what was usually expected of me as a new patient. I'm a bit taken aback by what I would need to do to see this doctor. Is it me, am I being too picky, or does the following seem a bit much to all of you, too?

The first thing in the packet is a letter to patients, telling you what is expected of you as a patient and what you can expect from him, as your doctor. Among a lot of the things said, here are some that stick with me as seeming a bit much:

--I am asked to pay a fee of $250 up front to pay for 2 books by this doctor that he wants me to read before seeing him, to familiarize myself with the jargon he uses, and

--to donate to a fund that he set up to help people who have no insurance to be able to see him (jjust the initial office visit alone is 975.00).

--I am later asked to buy other books, as well as DVD powerpoint presentations, and to give to still yet another fund he has set up, but these are options he encourages, not requirements, like the first two things here.

--I must get approval for all tests he will be running that first visit because he will not take time out of the visit to put in a call for insurance approval. There is also a list of tests I must have my pcp do before I see him, and those include some pretty heavy duty tests: MRI, MRS, pulminary stress test, echo stress, nasal culture (not covered by insurance), etc. I know other doctors have done these things, too, so...

--I must be nice to him and his staff at all times. He knows, being sick, we can get a bit crabby, but if we ever come across that way to him or his staff, he will ask that we leave his practice. He makes a point of this several different places in his multi-paged intro letter.

--I must arrive to my appointment on time, even if this means coming in the day before. If I am even minutes late, I will be cancelled and he does not guarantee a re-sheduling. He even admits to heavy traffic in his office area and an airport that cancels flights a good deal, but you are responsible to get there on time, no matter what.

--When calling the office, I must tell the office person, up front, how many questions I have. Let's say I have four. I must tell the office staff person I have four questions, up front, and after that, I am not allowed to ask more. Should I have more, I must write them down and wait another day to call. No kidding. He has a small staff and they do not want to take up a lot of time on the phone. And, there is a charge for all of these calls. See next point.

--Speaking of phone, after the initial 2 hour visit, all work with this doctor will be conducted over the phone, which isn't covered by insurance. All calls will be given a time value and will be charged according to that value: for instance, you'll be told "this call will be 10 minutes," and will be charged accordingly--there's a chart included that gives the prices per call--if you go over the ten minutes, you will be charged 10.00 per minute after that. If it's a family member calling on your behalf, that price goes up and per minute, it's 15.00.

--You are expected to send him copies of all of your files from the entire time you have been sick, plus the five years before that time. In other words, if you've been sick for 2 years, you need to send medical records for 7. With me, 7 years, I must send for 12. And, he doesn't care if it's 10,000 pages, you must send all by US mail. Anything faxed will be pitched.

--After the first visit, he will probably know, within 98.5% accuracy, what is wrong with you. He will start you on some treatment. If you don't do all of the treatment suggestions he gives, ever, he will consider that you really don't want to get well and decide whether he wants to continue working with you.

--He keeps your credit card number on account to pay for lab tests as they come (you aren't told about this, you just know to expect bills to show on your credit card).

--speaking of not knowing, you also sign a HIPPA paper stating that all of you personal information can and will be used by said doctor, seeing as he's a researcher, in his papers and in discussions with others, including your medical history, current test results and medical status, and even your name, age, address, telephone number, etc.

--He treats you for six months. Should you need more care, you have to go see him again.

--He wants a timeline of your illness and description. These two things are to be typed. In fact, all correspondence are to be typed.

Blah, blah, blah.

I just keep saying to myself, about myself, "Caution: Does not play well with others." I'm scared to see this doctor. I'm afraid of making a mistake that will get me booted from his practice, like being too ill one day to be Mary Sunshine and coming across, during one of my timed phone calls, as crabby.

And, I don't think I can afford him. He seems quite costly, with all of the uncovered tests, the care by phone that is not covered (for six months of time), the books I must buy, funds I must give to. And, I'm a bit hesitant to give anyone my credit card with permission to charge me for things that he deems are necessary without asking me.

Has anyone else had to do these things to see a doctor? I've never heard of having to give to a fund or buy books before seeing a doctor. Am I being too picky?

I know I'm desperate to get well, but not too desperate that I get taken advantage of.

Oh, and I've looked up this doctor to see what others have experienced with him, and found that he's come under medical review following an incident where he had a patient taking medication made for animals. His reasoning was that it was needed and wasn't FDA approved for humans yet.

What do you all think?

Thanks.

Linda

Edited by corina
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I agree. Sounds to me like he's more trouble than he's worth. I'm "assuming" an

environmental biotoxin specialist would be similiar if not the same as an integrative

doctor. These doctors look for toxins or other causes if your illness. Googling integrative

doctor in your area or asking someone at a local hfs would help you find one.

Of the top of my head, I'm thinking this doctor will look for toxins in diet, infections like lyme, mold, heavy metals,

bad bacteria, etc. Just from what I've seen, eating a healthy diet will be addressed first.

The only reason I can think of to see a doctor like this is if you've gone the local integrative

doctor route (diet, nutritional deficiencies, identifying and treating bugs and parasites, etc) and you're still sick. In which case, the patient would find it easier to understand what this specialist is doing.

Tc .. D

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I guessed at who this doctor could be. IF it is who I researched, he is all over Quackwatch. There are several docs out there like this: the Savior/Satan doctor. The super-sick go to him to save their lives when all else fails and he either cures them or makes them mad...no in between. Medicine is a practice, there are successess, failures and improvements of all degrees, NOT polar opposites like what I saw. Don't mention names, I don't need confirmation. I would NOT go, or even call back.

Edited by corina
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Thank you everyone for looking at this information and validating that I should feel uncomfortable with it.

I actually found a website / blog of a former patient of this doctor's who walked away from this doctor due to a lot of the things I thought I would run into, just based on the patient packet I told you about. He verified, through personal experience, that the doctor and staff are very sensitive and get mad over a lot of things if you don't follow everything they say just so. For instance, this former patient had to cancel, well in advance, a follow up appoint. (was over the six month mark so had to go back in person). The trip was 2300 miles and this patient was really sick. The doctor was so mad, he made the patient write a formal letter of apology to him and his staff before he would see the former patient again. He said he found himself walking on eggshells, scared to death he would do something wrong and be thrown out of the doctor's practice because he didn't have anywhere else to go or anyone else to see.

He also said he was a test subject (obvious from having to sign the HIPPA thing that says you will be used in research study with all your private stuff put out there), so his treatment was always based on the research of the hour. Even if one part of this person's health needed tweaking, it had to wait because the doctor only worked on what he was researching at the time. This patient got tired of that and felt his health was suffering due to the doctor's need for research.

I found this doctor mentioned on other sites, as well. He's highly respected. I don't think he's mentioned on Quackwatch. I immediately went there and plugged in his name, and he didn't pop up anywhere. I think he is respected for all he does, but people, including fellow doctors, have a problem with his carved in cement theories and treatments and attitude.

Again, thank you all for looking this over. I think I sometimes jump into things with unknown doctors a lot because I'm so desperate for an answer and help. I sometimes let desperation rule common sense, and I know that, so when I question things, I just don't trust my judgement.

Linda

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The problem with many of these "cutting edge" doctors, is that they ARE cutting edge: the research is not there, validated or even testable! This doctor MAY be right, but no one will know until time and testing bears it out. The doc's info that I saw cited tests that only his lab could do and mentioned persecution from the FDA and the government. ANY doc that complains of government persecution raises a red flag in my book!

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Linda,

in all honesty, he might be a well respected doctor and all, but still the way he "presents" himself is a bit awkward.

It's pretty much your decision if you want to pursue this avenue or not, but I'd be really really leery of this.

Good luck, whatever you decide to do.

Alex

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It sounds to me that you would end up getting more sick at the thought of walking through his door...He sounds like a controller, money hungry and doesn't follow any rules himself, like what the FDA recommends. Personally, I have a hard time with any doctor that lacks compassion. I'm a very picky patient, being a nurse, and expect the best treatment, and that includes bedside manners....I saw your other post yesterday and prayed for you; by the time I saw it, so many had already given you so much support, encouragement and compassion, that I felt I would have just repeated what they already said. My heart goes out to you, but I believe you would be wise to listen to what Firewatcher has to say!!

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Linda,

I looked a little more, and found an excellent suggestion from a "former patient:" since the doc has published his findings, it is all there for you to research! There are labs that will send you test kits for some of the same draws, you can take these to a sympathetic doc, who isn't going to make you sign away your human rights, and then you and that doc can go over the results. There are a few really smart docs left out there (hopefully you've found one) and you can get these books used at 1/4 the price. You've come this far educating yourself, don't stop now!

Good Luck! Keep us posted!

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LindaJoy,

I know which doc you are referring to and I am sorry because I really didn't know he was a whack job! I had just seen some of his research after seeing him on Mystery Diagnosis and he seemed to have good ideas. But, from what you are describing...he sounds like a scheister! I wouldn't go to any doctor that required me to purchase products from them.

On brighter note, I am so glad you are feeling lighter emotionally.

Katie

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Hi, everyone. Thank you for your continued comments. I'm feeling better and better about walking away from this doctor. I think my biggest fear is that I am very, very sensitive, and I agree, Kim, I think I would be a nervous wreck with him as my doctor, which wouldn't help me at all!

It's okay, Katie, you didn't know. Hey, like I said, I take all suggestions, and I appreciate yours so much. Please don't feel badly and don't hesitate to make more suggestions if you come across anything you think may help. I just didn't know what to think after I got the packet and felt like you all here are feeling: like I should run away from him as fast as possible. But, it's okay. No harm done and I appreciate you very much! ;)

Yes, Firewatcher and Anna, I've found that former patient's site and made a copy of all the tests he suggests for this, to take to my pcp and see what she thinks. When I saw her in her office last week, she offered to take a look at the packet when it came. I'm taking it to her tomorrow. She said she wanted to see what tests this guy was going to do and what he would then be looking for. I'm hoping she offers to do the testing instead. She's been really supportive and so kind so far, so.....Here's hoping for continued good care.

If you all aren't too busy, :wacko: , could you do me a favor? This doctor, and even his former patient, suggests a vision test called a VCS test. They say it can show biotoxin infection accurately in 90 some percent of cases. You order it online. If it's positive, then you know to pursue this subject as the possible cause of your illness. If it's negative, it doesn't mean you're out of the woods where biotoxin illness is concerned, but it's a good test to take, in their opinion. Could some of you look at the information for this VCS vision test and tell me what you think? Is it another money scam? Do you think that a vision test could actually show biotoxin illness?

Thank you, everyone. I feel bad asking you to do this for me, but I really respect your opinions.

Lindajoy

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The test is legitimate and easy to come by. I've done similar tests online for "field of vision" screening for pituitary tumors. The pattern of results is proprietary, meaning that the doctor's results as to what substance causes what pattern deficit is known only to his office. There are other articles online that could possibly point you toward which exposure you've had, but you'll have to search since the number of chemical exposures is so great. This test was used by NY to determine if dry cleaning chemical exposure had damaged the nervous system of people living near the facility. (http://www.health.ny.gov/environmental/investigations/perc/info_sheet.htm)

One of the questions that I would have is a chicken/egg one: can dysautonomia cause similar visual pattern loss as a chemical exposure, or did the chemical exposure cause the dysautonomia?

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Hi LindaJoy,

I'm pretty sure this is the same Dr I was thinking about seeing last fall. If so, he looks at all neurological illnesses as having a biotoxic cause. I never got as far as the packet, but did have a phone "interview" with his practice manager. It felt like he was sussing me out because he suspected I was an FDA informant or something. Maybe I was asking too many questions!!! LOL. The doctor offers a specialized treatment (some kind of light therapy) in addition to the biotoxin screening that is not FDA-approved yet. One of my integrative Drs told me that there are treatments in Germany and England that are similar and in the end if I decided (basically out of desperation) to try this it might actually be cheaper to fly to Germany to do it than to go to this guy becuase of all of the crazy costs & hoops you have to jump through. NO doctor should require patients buy his books or DVDs!! Major red flag. In the end I ran from him too! I am curious about his testing protocol as well and agreed with my doctors that we could mimic much of what he did here at home in a safer more transparent way. I also had the feeling they were preying on the sick and desperate who, like many of us, have been through all of the typical western protocols without much luck.

I don't know anything about the VCS test but hope folks here can help figure it out & will post what they find - sounds interesting!

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Hi, Dizzyde,

Yes, that's how I felt--like I would have to jump through crazy hoops and pay crazy costs to see him. Sometimes I think, "Yeah, but if he can help, maybe I should do all this." Then, I think, "But, you know yourself, Linda, and you do not fit the meek, do anything he says, go blindly into the treatment type of patient he seems to need everyone to be, so how far would you get anyway?" And, after spending how much money?

As I said earlier, I'm going to have my pcp look the packet over, like she said she wanted to do, even before I got it and had my own concerns with it. Maybe she'll volunteer to run some of the tests and see what they show.

Then again, my testing by the CFS doctor I went to last month showed I have two possibly chronic viruses that could be causing some of my issues, so who knows? Maybe I'd go through all of this with this doctor for nothing. Well, I guess that wouldn't exactly be the first time I'd go through a lot of stuff--testing, cost, failure in treatment, frustration, back to square one--with a doctor! :)

Take care, all.

Lindajoy

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Wow - this actually sounds like someone I was thinking of seeing... could someone PM me the name of this guy?

I agree with the comments above. I find it nothing short of outrageous that a doctor would require that you buy his DVD or book to accompany your treatment. I wouldn't have any issue with a doctor including a list of RECOMMENDED reading to help you understand your condition and treatment. But require?? When you're paying that much for an office visit??? And donate to a "fund"? That's just wrong.

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