ALERT: Teitelbaum to be on DR OZ SHOW this FRIDAY!

[klutzo]

Just the facts, maam!

Hi Koan,
It is funny that while reading the start of your post, I was thinking about how doctors are so sure they know the facts, and then you brought up speaking to a doctor about this. I agree that "facts" are slippery customers. I've been alive long enough to see many medical "absolutes" overturned completely. But doctors never seem to learn this.

Last week, I was fired by my primary doctor, basically for knowing more than she did and being reluctant to have the same test repeated for the 8th time, when it was negative the first 7 times, and when the disease being tested for is one with an average survival time of 23 months once symtoms start, and I had first been tested for it due to having those symptoms 22 years ago! I was fired for refusing to comply with prescribed treatment. Now my husband and I have 2 weeks to find a new primary before drugs that we badly need run out. We have an appt. with one tomorrow, but if he sees my old records from the previous doctor, he may reject me too.

In a world where most people see a solid and unchanging reality, if we who know it is not so must interact.......I don't know. It's a tricky path. And now you may say, but there is no path, there just is. Agreed, but I need a doctor since I will die without my medicines, and my husband cannot work without his. I'ts a pickle, and I am a nervous wreck right now, wondering what will happen tomorrow. I am aware of many Lyme patients who have been fired, but never thought it would happen to me.

klutzo

klutzo

 

[MEKoan]

In a world where most people see a solid and unchanging reality, if we who know it is not so must interact.......I don't know. It's a tricky path. And now you may say, but there is no path, there just is. Agreed, but I need a doctor since I will die without my medicines, and my husband cannot work without his.

What a horrible situation you find yourself in, Klutzo! I'm so sorry!

While "reality" may be a mutually agreed upon construct - or not - we still have to deal with it!

I'm a great believer in dealing with reality. Even if it's an illusion, the point of the exercise is to deal with reality.

I hope you are able to find a good doc. I would probably be unbearably anxious and frustrated in your situation. I hang onto my doc even though she only works one day a month, and I manage to see her every couple of years, because she respects me.

Please let me know how you go.

What a nightmare.

koan

 

[klutzo]

doctors and other necessary evils

Hi Koan,
Thank you for caring.
I am unbearably frustrated and anxious, just as you said you would be. I doubt I will calm down again until we have a doctor we can work with, and my MRI of the pancreas later this week is over and done. Until then, I am shaking like a leaf.

My first reaction when the postman came to the door with a registered letter from my primary doctor was that I knew right away what it was, having heard of this happening to other Lyme patients on many occassions.

When I read it, I flew in to a Lyme rage, which I quickly stifled by saying "Cancel" over and over until I stopped. My heart can't handle such anger anymore and responds with an immediate and dramatic increase in pulse and blood pressure. I took a muscle relaxer and some extra blood pressure meds and re-read it. I thought back over what I'd said and still saw nothing I'd done wrong. Then I bawled like a baby, because these cruel people hold our fates in their hands.

I've known for quite awhile that she wanted me gone. Really sick people like me need not apply. My husband and I went in for our appts. at the same time and in the same exam room, and she treated him totally different than she treated me. All he needed was his prescriptions refilled and labs every six months. He never had questions, problems, new symptoms or, God forbid, a list of them, which I always had.

When it was time for our annual physicals this year, she refused to order me a CBC, the standard blood tests everyone gets done, saying that because last years' was normal, I could not have one this year! I told my heart doctor who became quite angry, said that was absurd, that I had Lyme Disease and needed a CBC, besides which everyone should get one once a year, and ordered it himself. I have never seen him angry like that.

Another example is that she did a rectal exam on my husband but not on me. I asked why, and she actually flapped her hand at me dismissively and told me she was not doing one on me because rectal cancer is rare. I was thinking "tell that to Farrah Faucet", but I did not say it.

So, I knew we needed to get another doctor, but was too lazy and too busy with other hassles and too stressed out to do it, and now my delay has put us in a much more stressful position. I can't help this doctor with her life lessons, but I have learned one from this. I almost never procrastinate, and this was not the time to start!

klutzo

 

[MEKoan]

Klutzo,

What an awful situation. It must have been very bitter to experience in such a stark way the disparity between the care your husband gets and you don't.

Terrible.

I can't imagine anyone feeling any way other than the way you feel.

I will hold a good thought for you finding someone who is both compassionate and respectful as your primary care doc.

Wishing you the best!
Koan

 

[Hysterical Woman]

Klutzo's idiot doctor

Hi Klutzo,

Please, please don't beat yourself up for their idiotic behavior. You are not alone. Please keep us updated. Hopefully you will find a much better doctor who will treat you with more respect!

 

[klutzo]

Thank you

Hi weldman,
Thanks so much for the support. My husband just came home and said he'd been thinking about how I'd done nothing wrong that he could see, and he's decided the real reason she dropped me is because I'm on Medicare, but they aren't allowed to say that. He heard a report on the radio on his way home about how doctors are not taking new Medicare patients and finding any excuse they can to get rid of the ones they have before the Fed govt. drops their payments even further. Our area is a retirement mecca and full of folks on Medicare, so this is going to be a real mess. I guess doctors just can't make it anymore on only six times what the average person makes per year, poor babies! I was recently refused an appt. for a second opinion after the receptionist found out I was a Medicare patient. Her voice turned as cold as ice and she told me the doctor does not do second opinions and won't see anyone who has seen the same type of doctor any time in the past two years, which would eliminate anyone who has a problem of any kind. Absurd.

klutzo


P.S. to Fred - sorry for hijacking your thread. Just shows how caring everyone is here that they are being so supportive. I really think the extra B12s and B complex and folate, etc. is helping me deal with this. I am very nervous but I haven't gotten depressed by this, and I normally would have.I am esp. glad to be on the folacin, since finding out that my pancreas medicine blocks it's absorption almost completely! (Thanks to dannyBex). I am taking the folacin on an empty stomach, even though that is not advised, since I am not allowed to eat without the medication.

 

[Hysterical Woman]

Bad docs/money/CFIDS abuse

Hi weldman,
Thanks so much for the support. My husband just came home and said he'd been thinking about how I'd done nothing wrong that he could see, and he's decided the real reason she dropped me is because I'm on Medicare, but they aren't allowed to say that.




You are welcome. I think you and your husband are on to something. Another sad state of affairs. In order to keep from screaming every time I hear about stuff like this (all too often, of course), I start singing the "Money Makes the World Go 'Round" song from Cabaret. Unfortunately, it doesn't help the injustice, but at least my blood pressure doesn't rise up and spurt thru the top of my head.

This singing "therapy" is useful for so many aspects of CFIDS - having to deal with docs who milk the community, bad research, the CDC, etc. etc. You get the idea.

Take care,

Maxine

 

[zoe.a.m.]

Klutzo,
I'm sorry to hear about what's happening to you. It has happened to me before as well with a doctor calling me and screaming that I needed to find someone else immediately! No matter if you know it isn't something you've done, it still takes a long time to stop wondering if you're somehow--in some little way--responsible. You're not.

I'm really horrified that this is now becoming almost normal to CFS/ME patients. I'm also upset that doctors don't get much support or education AT ALL about this condition and therefore end up acting unprofessionally and unethically with patients. Often there's a financial component too--I don't even know how many offices can post "No Medicare or Medicaid." As long as that's legal, it's only going to increase. Above and beyond all that, there's still a huge failure in doc education (even for doctors who've been schooled in the last 5 years!!!). There's no excuse for this.

 

[MEKoan]

don't even know how many offices can post "No Medicare or Medicaid." As long as that's legal, it's only going to increase.

I think that's shameful.

I think you're right that it should be illegal but I'm Canadian so really have no business commenting on your system.

But, I don't know how doctors who refuse to take Medicare or Medicaid can live with themselves. I really don't. It may not be illegal but it certainly is unethical.

Koan

 

[klutzo]

Not taking govt. insurance

Hi all,
Zoe - I am so sorry a doctor actually yelled at you! I hope you went on the many internet doctor rating sites and fixed his/her wagon! I also hope you found a much better doctor since then. I had an office Mgr. tell me they don't like Fibro patients because they are too "strident". If we got some da*n help once in awhile, we wouldn't have to be!

I have had a doctor tell me they get only $8 per visit for a Medicaid patient, so they are losing money on them, big time. Most doctors I know refuse to see them, yet they complain about how unethical lawyers are. The result is that Medicaid patients end up getting only doctors who are so bad they can't keep patients.

I am not defending lawyers here, since we desperately need tort reform to bring down health costs, and most of the crooks in Congress are lawyers, but would like to point out that lawyers voted long ago to make themselves do 3% of their work for free every year for the poor and needy, what they call "Pro Bono". They actually imposed that upon themselves voluntarily. Can you even imagine doctors doing that? And, there are way too many lawyers, so they tend to be poorer than doctors due to plain old supply and demand, yet they give this time for free. A long time ago, I used to be married to a trial lawyer, and he gave far more than 3% of his time free to help people. I have not known one doctor who has done that.

I benefitted from the Pro Bono policy when I was being harrassed by a collection agency after my home was foreclosed on due to my losing my job to CFS. I tried and failed to sell it for just the amt. of the mortgage. I had never bought anything on credit before my home and had never had any debt, not even a car payment or a credit card. I was very sick and it was so embarrassing and the people who called me all day long were unbelievably nasty. A lawyer took my case Pro Bono, and put an end to the phone calls immediately. The bank sold my house almost right away, and got to keep my 20% deposit that took me years of bag lunches and driving the heap-of-the-week to save up, so they actually made a lot more by foreclosing on me than if I'd made the payments.

I think it may be illegal to refuse Medicare patients. That would explain the lies I've been told. As I've posted elsewhere, I can always tell when people lie to me, a mixed blessing. There is this most recent incident of my being fired by my PCP for asking a question about repeating a test. Then there was another incident about 6 months ago, when I decided I'd better get a second opinion on my gastroenterologist's rather lax treatment of my metaplasia (a precancer of the stomach....my father and grandfather both died of stomach cancer, so it needs to be watched carefully). When the receptionist heard I had Medicare she told me:
1) he does not do second opinions
2) he does not see any patient who has seen any other gastroenterologist in the past two years.
Who does that leave? Only younger people who are experiencing their very first stomach problems. In a retirement area like ours with so many older people, that is not enough people to run a practice. So, I am sure it was my being on Medicare that resulted in this stream of fake excuses. If it was legal to refuse me, I would think they just would have said so.

klutzo

 

[klutzo]

Can't stop crying

Update on finding a new primary doctor:

It could not have been more awful. We wasted a week of our 3 weeks before our drugs run out waiting for this appt. to a doctor recommended by both of my specialists. We filled out paperwork for an hour. The nurse was really cold, which should have been a warning. The doctor came in, did not look at us, did not shake hands, proceeded not to listen to anything we said, even when repeated twice, and told us in no uncertain terms that he will not pescribe controlled substances, period.

He says my husband should go to a pain specialist to get the little bit of Percocet he needs to go to work, and we should both go to psychiatrists to get the Xanax that he needs to be able to work with his muscle pain and tightness, and that I need to be able to walk without falling over . He said I should see a Rheumatologist for my Lyme. Seeing a Rheumy for Lyme, which is a neurodegenerative disease would be funny if it weren't so tragic. We told him no thanks, and at least he did not charge us for the visit.

We raced to the next two doctors on our shrinking list, and went in person and talked to the front desk, so they could see that we are just old, gray-haired people with pain. No dice. Neither of them will prescribe any controlled substances either.

My husband cannot work at all without theose drugs, and I have been on Xanax for 24 years and would die in less than 8 hours without it. I have tried to cut my dose by just 1/4 tablet and had severe withdrawl symptoms. His insurance, though outrageously expensive, will not pay for pain clinic visits. I have also had a freind tell me that the people at the pain clinic she visited were so skeezy she was afraid to come back there, and that one of them accosted her in the parking lot and tried to sell her some drugs....he insisted that must be what she was there for. She just has back pain from a car accident and needed help like us.

I have no idea what to do. I've been crying for 2 hours now. Shrinks these days are nothing but glorified dealers and they are awful. I've already tried that route, twice.

I am thinking of trying my old Rheumatologist, but then we would still have to find a primary doctor, and the Rheumy may have stopped giving controlled substances too, due to fear of the DEA, which can take away a doctor's license for any reason at any time with no recourse. Doctors got me hooked on this stuff in the first place, after promising me they would not, and now are abandoning me. Same with my husband who cannot earn a living without these drugs.

Having to see a shrink when we don't need one, and a pain specialist too, means yet more doctors taking up our money and our time. I am going to have to spend all day tomorrow calling up primary doctors in my husband's insurance book and acting like a drug seeker. I do NOT want to do this. I am at the end of my rope. I do not want to beg receptionists like I am some junkie, but the dirty work always falls to me, and this time it is my fault we lost our doctor since I aksed about repeating that negative test for the 8th time, which pissed her off.

I did not think to ask this first doctor's office when I booked the appt., because I thought when he saw that we are older people, he would never think we might be junkies, but it is the increased govt. paperwork that is making them refuse to do these things. One of the other receptionists we visited admitted that to us. In the case of this first doctor, we would not have wanted him anyway. He was awful.

No sleep tonight. I don't have the guts to do what I really want to do. These doctors are forcing me to spend the end of my life wasting precious time in their offices, doing their expensive tests and paying them my husband's hard earned money. There is only one way out and I am too much of a coward to take it.

klutzo

 

[Finch]

Klutzo - please hang in there! You're story is a terrible one and should be publicized somehow!

In the meantime, could you contact a local government official for help? Here is Pennsylvania, we'd call on our state representative. I don't know how it's set up in Florida. When you call on an elected official, their office is usually helpful.

Also, in an area with so many people who have Medicare, is there not an advocate agency of some sort? If not, there certainly should be.

Just some thoughts, as I think you need to get someone powerful on your side. I can't believe doctors can do this! I so hope this saga can be resolved for you very, very soon!

 

[Hysterical Woman]

Klutzo's treatment

Hi Klutzo,

What is happening to you is a sin! I believe that Finch's suggestions are great. If you try any of them, or even if you don't, please continue to let us know how you are doing.

Take care,

Maxine

 

[klutzo]

Trying to find a doctor

Dear Finch and Maxine,
I only managed 4 hrs. sleep, so excuse me if I don't make much sense. I have an MRI early tomorrow and don't know how I will ever mange it in my present state.

My husband is calling two of his long-term best clients who are doctors this morning and asking them what to do, and if they know anybody who would prescribe our drugs. Neither of them are Internists, unfortunately.

My husband just called and told me he talked to one of them. He is out of state but will be back late today and my husband will take his insurance provider book over to his office so he can look at it and see if the couple of docs he thinks might be more willing to pescribe what we take will be in there. That sounds very iffy to me.

My husband says he does not see how calling a representative will make any difference. Doctors can refuse to prescribe anything they want to refuse to prescribe, and 2 of the 3 drugs in question are being prescribed for what they call "off label" usage, which does not help our case. Xanax is supposed to be for anxiety not muscle spasm, though plenty of people take it for that.

What really fries my ass is that 24 ys. ago when I got sick, I did not want to take controlled substances but I could not walk and my Rheumy took me by the shoulders and said: "You need xanax the way a diabetic needs insulin, so don't be ashamed of it. I will not let you get addicted". Of course, dependency is genetic, and both my parents were alcholics. I was hooked in two weeks and have been ever since, but have only raised my dose once in 24 yrs. until now. I am taking them like candy now, because if I don't I will stroke out. I am a complete wreck. Where is that doctor now, when my ass is swinging in the wind?

At this point, it is not Medicare that is the issue, as none of the 3 who rejected us so far did so for that reason. It is the new govt. crackdown on prescription abuse that requires a ton of paperwork for the doctors and can cause them to lose their licenses to practice in a heartbeat if they make one tiny mis-step. Most of them opt out rather than prescribe under those conditions. I did some online reading last night and found that our former doctor is considered a "loose prescriber" which is something most other docs disdain. The trend to not prescribe any controlled substances is very strong, from what I read, so it looks really bad for us. In addition, I went to the website of our local hospital pain clinic. They offer about 20 treatments, none of them are drugs except epidurals. No opiates, no xanax.

The way it looks now, we will be forced to replace our primary doctor with three new doctors, a primary who does nothing but prescribe my thyroid med, a pain specialist for my hubby, paid for out of pocket, who will probably try to force him to have expensive epidurals, etc. to get him off meds, and a psychiatrist for both of us to get Xanax, though I don't know how we'll find one I haven't already left in disgust when previously trying and failing to get help from them for my secondary depression. (I solved that with small doses of pregnenolone and large doses of L-tryptophan). If I can find one I have not already seen, I can easily convince a shrink that I need my Xanax for panic disorder, since I also have that now, thanks to Lyme, but there is absolutely nothing psychiatric wrong with my spouse and he is not a good liar.

Thanks for the advice!

klutzo

 

[MEKoan]

Hi Klutzo

Can the Florida Medicare Quality Improvement Organization help you?

From their site:
FMQAI is Florida’s Medicare Quality Improvement Organization. As the Medicare Quality Improvement Organization for Florida and ESRD Network 7, FMQAI is under contract with the Centers for Medicare & Medicaid Services (CMS) at the U.S. Department of Health and Human Services (HHS).

www.fmqai.com

Maybe they can advise you as to where you might get help finding a doc.

I know you're a social worker and you know how to access services but I could not stop myself from trying to find you some help online. I know how much energy it takes to reply to misguided but well intentioned help so don't use any valuable energy to do so ~ it's probably not helpful, I know. Just feel so helpless!

I guess I have to remember how smart and strong you are. I know you don't feel very strong right now but you are. You've been through worse than this and you came out the other side. You have felt just as awful as you feel now and yet you got through it and learned to laugh again. You'll do it this time, too. One step, one breath, at a time.

If you must, you can be your own Social Worker. You can be calm for you and strong for you. It's not forever, it's just for now. One step, one breath, at a time.

We're cheering you on. We know how hard it is.

We believe in you.

Take care of Klutzo,
Koan

 

[MEKoan]

We were posting at the same time. I was posting and Googling so it took me a long time.

I see that you are doing exactly what I knew you would do. You are getting through it all with courage and you are being your won social worker!

You will do it, you will sort it out. I knew it before; I can see it in your post now.

Cheering you on!
Koan

 

[Dreambirdie]

So though it did not have the CFS focus we were hoping for (and that I was trying to move it toward), it does reflect getting a foot in the door, and I will be encouraging a show with a full segment on CFS & FMS, so it can be covered properly.

Letters that are angry and even abusive, likely leave them feeling the topic is still too controversial to cover. So venting may feel good sometimes, but if done without being reasonably considerate, it may simply once again push CFS/FMS OFF their radar screen.

Letters thanking them for covering the topic, but noting how and why it needs to be improved, and why it is important to cover, will more likely get what you want. It is OK to thank them for covering CFS, and still note that...

Ross!

Thanks much for posting this note from Teitelbaum. Very much appreciated.

and very good advice about writing letters to Oz.

Great to hear!

 

[MEKoan]

Thanks for this, Ross.

I think Dr. Teitelbaum's advice about angry letters is excellent.

However, I have long been concerned about a call for shows on this subject when it remains controversial.

There is absolutely no guarantee, even now, that coverage will not include a debate about the nature of the illness: psychiatric vs biological. The take away from that, no matter how good the biology argument, could easily be other than what we would wish.

The way people attend to this kind of information is not as we might like it to be. People have a tendency to hear what they want to hear and see what they want to see. And, we are far from any kind of uniformity of opinion even within the community of patients and practioners. The Dr Oz show, and even Dr. T's response illustrate that, I think.

Dr. T says he has been lobbying for shows on this illness for a long time. That being the case, the best we could have hoped for in the past was his message that ME/CFIDS is much more easily treatable than it is. I believe this would trivialize the illness and only make the situation worse for people who are very ill as family members who watched the show could, in a misguided attempt to help, push Dr. T's protocol on fragile and seriously ill patients who are working with thier own doctors using other methods.

I remain convinced that, aside from a compelling personal story of a well known individual - writer, actor, etc - who suffers from this illness and can tell their own story without opining re cause, treatment, etc., we should wait until we have more evidence about the ways in with the XMRV research changes the ME/CFIDS reality.

I don't want to see any more public debates about child abuse or stress or depression or abnormal illness beliefs. I don't want to see anything that will cause divisions in the patient community and inspire us to turn on each other.

I want to wait until the science is unassailable.

Then, we can talk.

one opinion, that's all,
Koan

 

[klutzo]

Dr. T

Ross,
Thank you for posting your response from Dr. Teitelbaum. It makes me feel a bit better about the future possibilities. Maybe in future, Dr. T will have more "TV savvy" and ask for some editorial control before he consents to appear. Don't know if he'd get it, but no harm in trying.

kltuzo

 

[Cloud]

Your all very welcome...

Koan, It was for this very reason that I was concerned about pushing Dr Oz for a show. Like most of you, I have seen these things go bad like this before. We all get excited about the idea of media attention, especially mass media attention, but your absolutely right that it can be much more to our detriment rather than advantage. I agree with your view on allowing the development of further evidence of the pathophysiology of ME/CFS before encouraging further media coverage in this type genre.