Living on Empty: Newspaper Story Highlights Whitney Dafoe's Severe ME/CFS

[Martinigal]

Janet's having trouble getting on the Forums but she emailed to say
"that the Stanford and PMF docs refuse to make home visits, and won't help him unless he comes in to fill out paperwork to establish an official medical record. He can't do that. It would harm him. It's outrageous and really really upsetting. I wonder what happened to "first,do no harm"?"

I've wondered that myself so many times. I did read this document that was circling around for a while, it was titled, A Letter To Patients, it talked about how scared doctors get when they see cases like mine and certainly your Whitney's. They are trained to help and they have no way to help us so they just don't want to deal with it.
Whitney sounds like such a brilliant, vivacious spirit. Know one here should every judge you, I can't imagine your pain. Also I don't know where you are at in dealing with the paperwork, how idiotic that paperwork even enters the conversation, I have a suggestion.
Would it be possible to pick up the paperwork and fill it out at home?
Would it be possible for Whitney to be taken by ambulance to the hospital?
I know how difficult it is to withstand what goes on in an E.R. It's uncomfortable, freezing cold, chaotic, bright lights, horrible for any of us suffering. I have my own
"kit" I take to the ER. A sleeping eye cover, DEFINITELY ear plugs, I-pod, sunglasses if I want to read, etc.
I recently was taken in for suffering Pneumonia and Meningitis, it's horrible to be in a hospital. Especially since I have Kaiser, the nurses there want to kill you, I think.
This isn't about me, I'm just letting you know that I understand the difficulties and I am in no way as sick as Whitney. I think we all just want him to get the care he deserves and we're all frustrated with you.
Another thing, have you tried reaching out to Dr. Teitelbaum? At least he understands all the different ways in which Whitney could be attacked by outside as well as inside attacks on his body. I contacted his about seeing him over the phone and he does have a whole program for that. I'm wondering if you contacted him (he's in Hawaii) and he saw how badly your son was suffering, perhaps he would agree to come see him. I don't know.
Anyway, my heart is with you. I really hope you are reading all the support you have hear and TOTALLY IGNORE any criticism. No one can judge you no imagine your situation. From what I've read you are amazing, caretakers are often overlooked. I hope you are getting some self care as well!
Lorraine C.

 

[Cort]

Thanks Merry. I added it to the blog

This video which is about Whitney and his family and, to a lesser extent, two other ME/CFS patients, may have been made to accompany the news story, although I didn't find it at the Palo Alto Weekly website but on Facebook:

 

[Cort]

I

Unless he comes in to fill out paperwork? This is so sad and infuriating.

As you can imagine his parents are not happy about this...

 

[Merry]

I understand that some of the people who have contributed to this thread are so shocked and horrified at how very ill Whitney is that they want something to be done right this minute to make him better, but implicit (in some cases more than implicit) in the suggestions is criticism of his parents. Why do you think they haven't done everything they can do at this point? Why do you think you know better what should be done? Please try to imagine how Whitney's family might feel if they read what you've written.

If you want to help, donate to research on severely ill ME/CFS patients.

 

[Carole]

I understand that some of the people who have contributed to this thread are so shocked and horrified at how very ill Whitney is that they want something to be done right this minute to make him better, but implicit (in some cases more than implicit) in the suggestions is criticism of his parents. Why do you think they haven't done everything they can do at this point? Why do you think you know better what should be done? Please try to imagine how Whitney's family might feel if they read what you've written.

If you want to help, donate to research on severely ill ME/CFS patients.

Merry- What you suggest as criticism was not to be at all. The patient evidently
is critical. He cannot make decisions on his care? Saving him-if that means moving him somewhere else is
Imperative!!!!

Wonder if you were the patient how you would feel with other help available and no one took advantage of it.

I know I would want to explore every avenue possible.

I live close to the CDC in Atlanta and saw the Ebola patients moved here to be treated by plane. They at least could walk!!!

Wake up-no time to be critical of people that are trying to help. If it could save him-do it!!!!!

Carole

 

[Cort]

Merry- What you suggest as criticism was not to be at all. The patient evidently
is critical. He cannot make decisions on his care? Saving him-if that means moving him somewhere else is
Imperative!!!!

Wonder if you were the patient how you would feel with other help available and no one took advantage of it.

I know I would want to explore every avenue possible.

I live close to the CDC in Atlanta and saw the Ebola patients moved here to be treated by plane. They at least could walk!!!

Wake up-no time to be critical of people that are trying to help. If it could save him-do it!!!!!

Carole

I know you're to help Carole but here's the thing I've begun to understand about Stanford - it's not a magic bullet. I was told there is one infectious disease doctor there - that's Dr. Montoya. Dr. Kogelnik worked with Dr. Montoya before and has access to all the medications that Dr. Montoya has. I honestly don't think that there's anything Stanford can offer that they can't get elsewhere. Remember that Stanford was very resistant to ME/CFS - their resistance disappeared when Dr. Montoya got some big donations. If its a doctor other than Montoya they likely have no experience with ME/CFS. Dr. Kogelnik and Dr. Kaufman - an infectious disease specialist - have a great deal of experience with ME/CFS and they're available. Since unlike Dr. Montoya they're able to see patients more of less full-time it's very possible that they have more experience with ME/CFS than he does.

I was visiting the Davis's last year. The day of my visit two outside doctors - both ME/CFS experts - were at the house assessing him. They are looking high and low for help...

The real problem, I think, is that people with severe ME/CFS as well as people with not so severe ME/CFS are just very difficult to treat.

 

[Carole]

Here's the thing about Stanford - it's not a magic bullet. I was told there is one infectious disease doctor there - that's Dr. Montoya. Dr. Kogelnik worked with Dr. Montoya before and has access to all the medications that Dr. Montoya has. I honestly don't think that there's anything Stanford can offer that they can't get elsewhere. Remember that Stanford was very resistant to ME/CFS - their resistance disappeared when Dr. Montoya got some big donations. If its a doctor other than Montoya they likely have no experience with ME/CFS. Dr. Kogelnik and Dr. Kaufman - an infectious disease specialist - have a great deal of experience with ME/CFS and they're available. Since unlike Dr. Montoya they're able to see patients more of less full-time it's very possible that they have more experience with ME/CFS than he does.

I was visiting the Davis's last year. The day of my visit two outside doctors - both ME/CFS experts - were at the house assessing him. They are looking high and low for help...

The real problem, I think, is that people with severe ME/CFS as well as people with not so severe ME/CFS are just very difficult to treat.

Cort- Maybe it is not ME/CFS????

Carole

 

[Cort]

As part of the End ME/CFS project, by the way, Ron Davis will be developing ways that will allow them to do sophisticated tests ;i.e., tests that heretofore could only be done at hospitals, at severely ill patients bedsides...

 

[Cort]

Cort- Maybe it is not ME/CFS????

Carole

Ha! Good question. My take on that question is that it is ME/CFS - he fits the criteria - AND there are a lot of different pathways to ME/CFS and probably different kinds of ME/CFS. Based on his history I would bet he picked up a bug on his travels...


Whitney's symptoms now - in particular the sensory problems - sound very much like those found in other very severely ill ME/CFS patients. I wonder if there's any other disorder that looks like that? Does anybody know? It would be fascinating to find that there are...

 

[Carole]

I know you're to help Carole but here's the thing I've begun to understand about Stanford - it's not a magic bullet. I was told there is one infectious disease doctor there - that's Dr. Montoya. Dr. Kogelnik worked with Dr. Montoya before and has access to all the medications that Dr. Montoya has. I honestly don't think that there's anything Stanford can offer that they can't get elsewhere. Remember that Stanford was very resistant to ME/CFS - their resistance disappeared when Dr. Montoya got some big donations. If its a doctor other than Montoya they likely have no experience with ME/CFS. Dr. Kogelnik and Dr. Kaufman - an infectious disease specialist - have a great deal of experience with ME/CFS and they're available. Since unlike Dr. Montoya they're able to see patients more of less full-time it's very possible that they have more experience with ME/CFS than he does.

I was visiting the Davis's last year. The day of my visit two outside doctors - both ME/CFS experts - were at the house assessing him. They are looking high and low for help...

The real problem, I think, is that people with severe ME/CFS as well as people with not so severe ME/CFS are just very difficult to treat.

Cort-
This is the last time I am going to say this to everyone. I AM NOT CRITICAL OF THE CARETAKERS. I think they have
been Phenominal. I am saying if they have exhausted what they have-even if it means moving him to another area
or Doctor. He has been with Kogelnik now 3 years? Continues to get worse? Bring him to the CDC in Atlanta.

If they can fly Ebola patients here from Africa-they can get him here.

Sorry- just don't get it.

Carole

Carole

Carole

 

[Carole]

Ha! Good question. My take on that question is that it is ME/CFS - he fits the criteria - AND there are a lot of different pathways to ME/CFS and probably different kinds of ME/CFS. Based on his history I would bet he picked up a bug on his travels...


Whitney's symptoms now - in particular the sensory problems - sound very much like those found in other very severely ill ME/CFS patients. I wonder if there's any other disorder that looks like that? Does anybody know? It would be fascinating to find that there are...

I think I had suggested that in an earlier post on this. To Issie. That is why I suggested the CDC.

There were many patients- years ago I lived in California that came down with Aids and Hepatitis. Some came back-some didn't.

Sounds and looks just like him. Of course if there is another bug and anything else was shutting his Immune system down anyway-it would be devastating. The travel out of the country may be a clue??

Carole

Carole

 

[Cort]

Cort-
This is the last time I am going to say this to everyone. I AM NOT CRITICAL OF THE CARETAKERS. I think they have
been Phenominal. I am saying if they have exhausted what they have-even if it means moving him to another area
or Doctor. He has been with Kogelnik now 3 years? Continues to get worse? Bring him to the CDC in Atlanta.

If they can fly Ebola patients here from Africa-they can get him here.

Sorry- just don't get it.

Carole

Carole

Carole

Got it!

Hey don't feel bad - this question is opening up a lot and helping us understand more of the travails the severe ME/CFS patients faces. The truth is that few of us really get how ill these patients really are. I think you probably have to be there to really understand: Janet Dafoe emailed me this - It gives a pretty good understanding of what they're facing.

We have Andy Kogelnik for a doctor, and two others who come to the home and consult by phone. He consults with specialists all over the world about what to do about this. We are not sitting here with our heads in the sand letting Whitney suffer. Stanford is not a magic bullet. There is nothing there that Kogelnik does not know about (he was a resident with Montoya). And if all they wanted was paperwork, I'm not an idiot, of course I have offered to fill it out. They insist on a physical clinic visit. There is not one thing that they can do at a clinic that they can't do at home, for an initial visit to establish a medical record. People should not just assume that we haven't done everything possible under the sun to try to help our son. The list of things we've tried is incredibly long. Both regular medicine and alternative things as well.

This is actually indicative of this disease. If one had diabetes, one could go to a physician anywhere and they would tell you what it is and how to treat it. No problem. No controversy. No searching all over the place for yet another doctor who might be able to help. BUT, since there is so little known about CFS, and the symptoms lead one to suspect all sorts of things (which we OF COURSE have suspected and explored and tested and tried to treat) people go all over the place trying to find that doctor that will have an answer. And people do find things. Some things help for some, but not for others. The lucky ones find things that make them somewhat or sometimes significantly better. So far, nothing has made Whitney better.

Also, for that person who says just take him to Stanford, this is a very difficult decision and the benefits have to be weighed carefully with the known harm. It could kill him. I can't even touch him, move him, or move anything in his room without him crashing very severely and being unable to even allow me to hook up his IV. The trauma of an ambulance, of moving him onto the gurney, even, is overwhelming. An ambulance is the only way he could get there. Then the hospital takes over, and they do not understand the impact that their noise, poking, tests, and their very presence, has on him. He is alone all day long, trying not to crash. Imagine the hospital. It could kill him, or cause him to get significantly worse indefinitely.

Whitney's father is Ron Davis, eminent scientist at Stanford University, who is changing his whole research focus onto CFS and has developed the most comprehensive scientific investigation into CFS that has ever been proposed. He is personally advocating with Francis Collins, Director of NIH, whom he knows quite well (he worked with him for 6 years on Council for the Human Genome Project) for more research funding. He was on the IOM committee and read the entire literature on CFS. He has contact with Klimas, Bateman, Peterson, Chia, et al.

Please, assume we are doing all we can, and it's a LOT; our entire lives are completely consumed by it. 24/7. And that we are open to suggestions. Thank you very much. I pray for research funding and for every one of you to feel better!

 

[Carole]

Got it!

Hey don't feel bad - this question is opening up a lot and helping us understand more of the travails the severe ME/CFS patients faces. The truth is that few of us really get how ill these patients really are. I think you probably have to be there to really understand: Janet Dafoe emailed me this - It gives a pretty good understanding of what they're facing.

JANET
I do KNOW you are doing all you can. I am so sorry if I have made anything worse for you as I realize you are giving your life to care for your son.

Please accept my sincere apologies . I just don't understand in this age of modern medicine,
someone so young-could get to this point.

Please know my Prayers are with you and your family

Carole

 

[Carole]

JANET
I do KNOW you are doing all you can. I am so sorry if I have made anything worse for you as I realize you are giving your life to care for your son.

Please accept my sincere apologies . I just don't understand in this age of modern medicine,
someone so young-could get to this point.

Please know my Prayers are with you and your family

Carole

Janet- Also wanted to say- I don't know your son, but I have seen his Art work and I already love him.

His work is beautiful and Mystical.

Blessings.

Carole

 

[Issie]

You asked if anyone can think of any other possibilities. I can think of three.

Lyme and co infections and FL1953 (a malaria type Protozoa)
POTS
Multiple System Atrophy

One lady with POTS that I used to talk with went down this bad. It was more than POTS though. I'll try to see if she got an official DX. But she was so sick she couldn't respond last time I tried. There are newspaper articles about her. I'll try to find them. She was bed bound and to the same point as Whitney. POTS was one of her DXs.

The autonomic nervous system controls every function of your body. Let it get messed up and nothing works right. His mom describing how noise and activity bother him - this is very common in POTS. The sympathetic nervous system is in overdrive and catacholomines run very high. Many of us feel this is probably a compensatory thing. But it makes you a jumpy, nervous wreck. It helps the heart beat faster to increase blood flow to the heart and head. With being forced to be sedentary this will increase this response. The muscles are atrophied and cannot do this function for the body. So the body is relying on the heart to do it. Ohhhh I feel for him. I know how uncomfortable this is. There are not many doctors that know or treat for POTS.

As for the Protozoa infections. My doc feels this is part of the problem with POTS. The Protozoa cause a biofilm to house itself along with virus and bacteria. It causes the immune system to not detect it and it remains. The biofilm attaches to the vein walls and causes dysfunction of the function of the veins by not allowing them to dilate and contract properly. Not to mention it's a clogging type thing too. His theory is this is one of the issues. He is treating many autoimmune illnesses based on this research and many are recovering. (I'm better than I've been in years.). It addresses the autoimmune system and inflammation.

Don't know if these things have been looked at. Just suggestions.

Issie

 

[Issie]

Another thought. Before anorexia was known about back in the 70s. I nearly lost my sister to it. There was an old doctor who gave her anabolic steroid shots. He said they gave them to POWs who came out of camps that had been starved. They are not able to eat because it changes the chemistry of the brain and because the function of the body has been so depleted. It's impossible for them to eat and regain their health. This was something he swore by. And it worked. I don't know if he is able to eat, but this may help his body start to wake up and turn around. It did for my sister. She had 5 shots and was able to start eating. They were spaced out. She also has CFS really bad. She was to the point of death. She is 6'1" and went down to 85 lbs. It saved her life.

Issie

 

[Carole]

You asked if anyone can think of any other possibilities. I can think of three.

Lyme and co infections and FL1953 (a malaria type Protozoa)
POTS
Multiple System Atrophy

One lady with POTS that I used to talk with went down this bad. It was more than POTS though. I'll try to see if she got an official DX. But she was so sick she couldn't respond last time I tried. There are newspaper articles about her. I'll try to find them. She was bed bound and to the same point as Whitney. POTS was one of her DXs.

The autonomic nervous system controls every function of your body. Let it get messed up and nothing works right. His mom describing how noise and activity bother him - this is very common in POTS. The sympathetic nervous system is in overdrive and catacholomines run very high. Many of us feel this is probably a compensatory thing. But it makes you a jumpy, nervous wreck. It helps the heart beat faster to increase blood flow to the heart and head. With being forced to be sedentary this will increase this response. The muscles are atrophied and cannot do this function for the body. So the body is relying on the heart to do it. Ohhhh I feel for him. I know how uncomfortable this is. There are not many doctors that know or treat for POTS.

As for the Protozoa infections. My doc feels this is part of the problem with POTS. The Protozoa cause a biofilm to house itself along with virus and bacteria. It causes the immune system to not detect it and it remains. The biofilm attaches to the vein walls and causes dysfunction of the function of the veins by not allowing them to dilate and contract properly. Not to mention it's a clogging type thing too. His theory is this is one of the issues. He is treating many autoimmune illnesses based on this research and many are recovering. (I'm better than I've been in years.). It addresses the autoimmune system and inflammation.

Don't know if these things have been looked at. Just suggestions.

Issie

Issie-
Great post. I totally agree with you. I am not a Dr but something else is going on. The POTS fits the profile.

What about the Dr. in Charleston SC? I cannot remember his name but is the top authority on Pots and OI.
Thanks as always for your educated input.

Carole

 

[Issie]

Issie-
Great post. I totally agree with you. I am not a Dr but something else is going on. The POTS fits the profile.

What about the Dr. in Charleston SC? I cannot remember his name but is the top authority on Pots and OI.
Thanks as always for your educated input.

Carole

http://www.dinet.org/index.php/physician-list?view=physicians

Here is a list of POTS doctors.
My doctor at Mayo, AZ is Brent Goodman

My primary and doc for Protozoa is also in AZ - Dr Stephen Fry.

I think the doc you are thinking of in SC is for MCAS.

Issie

 

[Issie]

http://www.dinet.org/index.php/physician-list?view=physicians

Here is a list of POTS doctors.
My doctor at Mayo, AZ is Brent Goodman

My primary and doc for Protozoa is also in AZ - Dr Stephen Fry.

I think the doc you are thinking of in SC is for MCAS.

Issie

Here is a good article on POTS and Dr Grubb.

http://www.nbc24.com/m/news/story?id=1011503

Issie

 

[AnnieS]

I am so sorry that Whitney has such a severe form of M.E. I thank his family for sharing his story and send them buckets of love for all they face daily.

What I am getting from some comments on here is not perhaps appreciating how very severe M.E and its symptoms means travel to a doctors could either kill the person or plunge them into even more intense deterioration that would make life beyond tolerable if that was even possible with a case as severe as Whitney's. Due to this and as Whitney's mum says considering even travelling by ambulance to see a doctor when there are no guarantees the treatment will help is an extremely difficult decision to make.

Autonomic dysfunction is undoubtedly involved in severe M.E (why does it have to be automatically considered as something else other than part of very severe m.e, perhaps it is, perhaps it's not) and I would have thought but I don't know as I am not involved Whitney's current doctors would be looking at autonomic dysfunction as he is seeing some of the few experienced M.E doctors out there. I imagine that Whitney lies flat not only due to orthostatic intolerance but also to being ghastly ill, intolerably weak with acute sensory overload.

My heart goes out to Whitney and all very severe M.E sufferers, it's a hellish existence with no clear answers