Disappointing Mayo Clinic Treatment

[PennyIA]

I do remember seeing at least one grand piano in the waiting room where I was stuck for about 6 hours. Don't remember too much of the rest of my visit as by then I was wheel chair bound and very brain fogged from the PEM caused by the first day experience.

I should state how thankful I am that my $50,000 bill (after supposedly good insurance) was negotiated down to only around $6,000 which I was able to pay off and only between that negotiation and a couple of others managed to avoid bankruptcy.

 

[Quemist]

Alright, so I've "graduated"-- I do feel pretty good about the treatment.
Essentially, I do think that the therapy was very good for coping with an illness that doesn't have a chemical/medical treatment that is widely accepted right now. I'm okay with that.
They did put me on a moderate taper of the medication, so I don't think that there was any foul play there. Once I left they said that they thought that I could consider going back on medication, if I felt that that was necessary.

As for the theory of central sensitization, I can understand it. I honestly believe that this is some kind of viral infection that is causing brain inflammation. Based on the areas of inflammation, it gives the subsequent symptoms. I did see a number of people in the program with nearly identical symptoms, too.

 

[Shoshana]

Very good to hear your update, @Quemist

And glad to know you are doing ok !

 

[Quemist]

I do remember seeing at least one grand piano in the waiting room where I was stuck for about 6 hours. Don't remember too much of the rest of my visit as by then I was wheel chair bound and very brain fogged from the PEM caused by the first day experience.

I should state how thankful I am that my $50,000 bill (after supposedly good insurance) was negotiated down to only around $6,000 which I was able to pay off and only between that negotiation and a couple of others managed to avoid bankruptcy.

I'm really happy to find that you were able to negotiate. Thats what I'm going to be working on next.

 

[ebethc]

Alright, so I've "graduated"-- I do feel pretty good about the treatment.
Essentially, I do think that the therapy was very good for coping with an illness that doesn't have a chemical/medical treatment that is widely accepted right now. I'm okay with that.
They did put me on a moderate taper of the medication, so I don't think that there was any foul play there. Once I left they said that they thought that I could consider going back on medication, if I felt that that was necessary.

As for the theory of central sensitization, I can understand it. I honestly believe that this is some kind of viral infection that is causing brain inflammation. Based on the areas of inflammation, it gives the subsequent symptoms. I did see a number of people in the program with nearly identical symptoms, too.

That's a LOT of money to spend to get to the outcome... e.g. Many have written on coping mechanisms for chronic illness.. Herbert Benson founded the mind body clinic at Harvard decades ago and the Osher Center at UCSF has been around a long time. I read books by Joan Borysenko (bensons protege) and Jon Kabat Zinn in the 90s... I went on a couple meditation retreats & did some therapy... altogether, I probably spent a few thousand dollars ( including a full work up at northwestern) ...Thankfully, at least no one was telling me that meditation or therapy was going to cure me. Again, that was in the 90s.

I'm glad it helped however it's totally unethical for mayo to tout therapy and such as cures, as if the core problem is psychological.... doctors said that ulcers were caused by stress until H Pylori was discovered, then they were like, Oh, that's right, SCIENCE.. most could benefit from stress reduction, but don't let doctors gaslight you into thinking stress reduction is a cure AND take 10s of thousands of dollars out of your pocket

This illness has destroyed my financial security and my career, plus many relationships. Keep fighting for a cure... you don't want to wind up like me. Seriously... think about... TWENTY years from now doctors could STILL be telling u to meditate.

 

[GONZ0hunter]

How much then?

Millions

 

[GONZ0hunter]

I found it is a huge money boom. Everything centerened around taking money. Stay 8 weeks in a hotel . Walk through the gift shop.

I know how to run a lean organization and the run rich. Anyone who says different I'm willing to discuss how they could save money to improve care.

 

[GONZ0hunter]

And to be clear I pay for ivig treatment every 3 weeks plus retuxiban and plasmapharisia. So I get expensive treatment , but that should be helping not building a temple to their own greatness.

Mayo is a joke.

 

[GONZ0hunter]

Whomever asked if the pain is comsant then yes it is.

I have other factors that I can't discuss openly though due to,it being shown who I am as to the rarity of my disease.

 

[Gingergrrl]

And to be clear I pay for ivig treatment every 3 weeks plus retuxiban and plasmapharisia.

I have talked to several new people about their treatments this week (so please forgive my confusion!) but are you getting IVIG, Rituximab AND plasmapheresis all at the Mayo Clinic every three weeks?!!! Or am I totally misunderstanding? Thanks in advance.

 

[GONZ0hunter]

I have talked to several new people about their treatments this week (so please forgive my confusion!) but are you getting IVIG, Rituximab AND plasmapheresis all at the Mayo Clinic every three weeks?!!! Or am I totally misunderstanding? Thanks in advance.

No due to another disease

 

[Gingergrrl]

No due to another disease

Would love to hear more about this some time if you are comfortable sharing. I am having IVIG right now but can I send you a PM later?

 

[Jigsaw]

Yes, I've had excellent male doctors too. I was just commenting on the situation where a woman patient is not taken seriously until she brings her husband to the appointment.

Hi @Sushi,

It is indeed amazing the difference a male companion in the consulting room can make. Staggering to think that sexism is still so rampant in medical consults. I do agree with you about that!

 

[Jigsaw]

Alright, so I've "graduated"-- I do feel pretty good about the treatment.
Essentially, I do think that the therapy was very good for coping with an illness that doesn't have a chemical/medical treatment that is widely accepted right now. I'm okay with that.
They did put me on a moderate taper of the medication, so I don't think that there was any foul play there. Once I left they said that they thought that I could consider going back on medication, if I felt that that was necessary.

As for the theory of central sensitization, I can understand it. I honestly believe that this is some kind of viral infection that is causing brain inflammation. Based on the areas of inflammation, it gives the subsequent symptoms. I did see a number of people in the program with nearly identical symptoms, too.

Glad you're out of there in one piece. X

 

[Jigsaw]

I do remember seeing at least one grand piano in the waiting room where I was stuck for about 6 hours. Don't remember too much of the rest of my visit as by then I was wheel chair bound and very brain fogged from the PEM caused by the first day experience.

I should state how thankful I am that my $50,000 bill (after supposedly good insurance) was negotiated down to only around $6,000 which I was able to pay off and only between that negotiation and a couple of others managed to avoid bankruptcy.

Really? 50K down to 6K? What does that say about their mark-up? (At Mayo, not you!)

 

[Rvanson]

I do think the occupational therapy is helping and they give us a lot of coping techniques, which are beneficial.

I think that they're trying to have some explanation for why so many people have catastrophic responses to chronic symptoms. I can understand trying to desensitize someone to their symptoms and not focusing on the fatigue is helping- but my life outside of the program isn't looking so wel (if you can't tell from the family problems).

I was formerly seeking my doctorate in chemistry and for about three years the fatigue was so bad I had to leave. In the process, I've had so many terrible neurological symtoms and memory issues that going back to work seems pretty hopeless. I'm trying, as we all are- but it isn't comfortable to say the least :/

The social isolation alone, as well as being seen as "weak" or "unproductive" is a hell unto itself. I'd LOVE to go back
to work full-time in my old profession. Like many,or most men, I got lots of my motivation at working for a living, and I miss the lack of a social life, too as well. I cant blame people for believing this illness is contagious, so they stay away.

In my case it started with a case of food-poisoning within several hours of eating at a restaurant with friends, but I have read of family members of other ME/CFS patients seeming to become ill with ME as well, so it's likely that close contact might be contagious, at least in some cases.

I wouldn't wish this disease on my worst enemy, if I had one. Its bad enough enduring the disbelief of doctors and kinfolk, much less enduring it with no cure for this disease in sight.

 

[Jigsaw]

Not for profit does not mean poor. It means the dividends go back into the organization, not to shareholders, owners etc. Those can then be used for expansions, upgrades etc.

I'm confused

I thought "Not For Profit" meant "Charity".

And I bet you anything you like that money is paid to people "in" the organisation, heads of, medics, other staff - or are they all working for free? I think not.

Whatever they say about being a Not For Profit organisation, the mere fact that they can charge a patient 50K then have it negotiated down to 6K speaks volumes about their mark-up.

I imagine that a non-charity Not For Profit has to cover its basic running costs, wages, etc. I don't see how marble panels fit into that, ethically speaking.

I also bet you that the head honchos get ginormous salaries.

"Not For Profit" implies, to me, at any rate, a charitable organisation. I see little charity in causing vulnerable patients bankruptcy, or in insisting that their condition is psychosomatic. "Give us your house, do a spot of meditating and you'll be FINE! - We're helping you by removing the roof over your head, because everyone knows meditation is helped by doing it outdoors, at one with nature."

Oh puhleeeese......what a crock.

 

[Jigsaw]

The social isolation alone, as well as being seen as "weak" or "unproductive" is a hell unto itself. I'd LOVE to go back
to work full-time in my old profession. Like many,or most men, I got lots of my motivation at working for a living, and I miss the lack of a social life, too as well. I cant blame people for believing this illness is contagious, so they stay away.

In my case it started with a case of food-poisoning within several hours of eating at a restaurant with friends, but I have read of family members of other ME/CFS patients seeming to become with ME as well, so it's likely that close contact might be contagious, at least in some cases.

I wouldn't wish this disease on my worst enemy, if I had one. Its bad enough enduring the disbelief of doctors and kinfolk, much less enduring it with no cure for this disease in sight.

I cant blame people for believing this illness is contagious, so they stay away.

I don't think they stay away because they think it's contagious. I think they stay away because they don't know how to be with us. Also, lots of them think we're lazy and just making it up, and their scorn keeps them away. Impatience, too, keeps them away. I mean, how hard can it be for us to make an arrangement and stick to it? - They get fed up being let down when we have to cancel. They genuinely don't or can't understand what we experience.

Normals also find talk of illness uncomfortable to be around. So we end up in a vicious circle of having to say we're fine, when we're not, and then having to cancel arrangements because we just can't do it that day. That makes it look like we don't want to see them, because we've already said we're fine......

Most people with no personal experience of chronic ill-health have no sympathy for ME/CFS. I've been ill since - well, forever, really, but it got much worse in the 90's. My social life fell apart. I got cancer in 2007, and all sorts of old "friends" came out of the woodwork.

It was touching until they all disappeared again, because although the cancer is (for now) gone, I'm still ill. Cancer they could deal with, because it supposedly has an end-point. If you survive, you're supposed to be well again. More importantly, it's a globally recognised medical condition with recognised treatments. That gives it a status that ME/CFS just doesn't have yet.

I think they feel that you get social brownie points for visiting a friend with cancer, but social derision for visiting a friend with a chronic condition like ME/CFS.

I survived, but got even more ill than I was pre-cancer. Almost none of my old "friends" seem able to cope with that.

I have read of family members of other ME/CFS patients seeming to become with ME as well, so it's likely that close contact might be contagious, at least in some cases.

I'd be interested to see references on that. I'm strugglimg to see how it can be contagious, but I'm always open to new info

None of my family or my partners over the decades I've had it have "caught" it from me.

If it's viral in origin, which is just one of many hypotheses about the cause, then it would be feasible that other family members would be exposed to the trigger virus at the same time as the original member was.

If they developed it later down the line, they could have either been experiencing a previously dormant but then woken virus (e.g., some herpes-family viruses do that, they lie dormant in nerves for years before being activated, usually by stress lowering the immune defence, I don't know for sure if any other viruses behave like this, but don't see why they shouldn't), OR it's genetic, and family members are likely to develop it because it's that family's genetic disposition to do so.

If yours developed after food-poisoning, I wouldn't have thought there isn't the remotest chance of anyone "catching" it from you now. Food poisoning is bacterial not viral, and leaves the body pretty rapidly. You can't catch food poisoning from close contact, unless the close contact is with bacteria-riddled food!

 

[iamnotmyillness]

I'm confused

I thought "Not For Profit" meant "Charity".

And I bet you anything you like that money is paid to people "in" the organisation, heads of, medics, other staff - or are they all working for free? I think not.

Whatever they say about being a Not For Profit organisation, the mere fact that they can charge a patient 50K then have it negotiated down to 6K speaks volumes about their mark-up.

I imagine that a non-charity Not For Profit has to cover its basic running costs, wages, etc. I don't see how marble panels fit into that, ethically speaking.

I also bet you that the head honchos get ginormous salaries.

"Not For Profit" implies, to me, at any rate, a charitable organisation. I see little charity in causing vulnerable patients bankruptcy, or in insisting that their condition is psychosomatic. "Give us your house, do a spot of meditating and you'll be FINE! - We're helping you by removing the roof over your head, because everyone knows meditation is helped by doing it outdoors, at one with nature."

Oh puhleeeese......what a crock.

I was going to say/clarify that Not For Profits DO typically set the salaries of their CEOs and other executives significantly high. But meanwhile, they will pay their regular workers a pittance and they aren't governed by the normal labor laws because they are a NFP. I found that out the hard way by working for a NFP to put myself through college, 80 hours a week making $6 an hour, no overtime pay or holiday pay.

There are a rare few NFPs that do things for the sake of a charity and doing good but in general they are in it for the money. I don't trust most of them ONE bit! Most of them bank on the fact that the general public misunderstands and believes them to be benevolent. People study to go into NFPs in the top Business schools such as Harvard. And they aren't doing it out of the goodness of their hearts.

 

[Jigsaw]

I was going to say/clarify that Not For Profits DO typically set the salaries of their CEOs and other executives significantly high. But meanwhile, they will pay their regular workers a pittance and they aren't governed by the normal labor laws because they are a NFP. I found that out the hard way by working for a NFP to put myself through college, 80 hours a week making $6 an hour, no overtime pay or holiday pay.

There are a rare few NFPs that do things for the sake of a charity and doing good but in general they are in it for the money. I don't trust most of them ONE bit! Most of them bank on the fact that the general public misunderstands and believes them to be benevolent. People study to go into NFPs in the top Business schools such as Harvard. And they aren't doing it out of the goodness of their hearts.

Sadly, there are precious few people involved in health care, at whichever end of the natural vs pharmaceutical end of the industry you look at, who aren't in it for the money.

I'm really sorry to hear of your crappy low pay experience. But thanks for the inside info. It backs up what I had no proof of, but thought anyway!

One of my friends, who used to be a paying patient when I was still practicing properly, has spent literally thousands visiting the likes of Jean Munro, and other so-called Top Nutritionists, or Top Thyroid Specialists, or whatever.

None of them have helped much, if at all. Some of them have made her very much worse. All of them have charged £100's per consult, plus more £100's for "Necessary Testing".

She nearly always phones me to complain about how much it's cost her, while I'm still advising her for nothing (somehow charging her stopped when we became, over time, friends on top of our client/practitioner relationship).

Everyone needs to make a living, and there's nothing inherently wrong in exchanging skills for money - it's what working is all about. But I do object to "experts" offering false hope and charging a fortune for it.

I used to be £60 an hour. Some practitioners in the UK are around £300 an hour, plus tests. But The Mayo's prices are unbelievable! They knock anything I've seen here out of the park! I'm sure it should be considered extortion, especially when they can't even dx CFS/ME etc correctly.

Or maybe that's all in my head?



I think when I restart my practice, I'm going to ask for donations rather than charge a fixed fee. I know I risk possibly having people take advantage of me, but hope that helping people actually get well again rather than sending them away with an enormous invoice and a Psycho-Something dx might generate a living wage, at least.

Yeah, I know, naive......just don't ever want to be doing this for the money. I won't ever sell products, or develop my own, either. It smacks too much of marketing and sales instead of being interested in getting people well again. I'm deeply suspiscious of any practitioners that sell their own line of products, because the chances are that they'll tell you you need them, even if you don't. And if you don't trust them, they tell you to have tests to prove or disprove the supposed deficiency, and they charge for those, too. It's just money, money, money. I don't want to be part of that.