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

[Issie]

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

If there is orthostatic intolerance - most of us with it find we need to have our heads elevated at least some. Lying flat seems to make us worse. Many of us need oxygen and Cpap machines because we don't have enough O2 and because the autonomic system is faulty our brain doesn't tell us to breathe in our sleep. Compression garments help some and inflatable leg pumps to get oxygen and blood to our hearts and heads. Being aware of something can allow one to make positive changes in comfort at home. If we don't know those things - we can't do them.

When someone is in a desperate place with someone this critical, we reach out for answers. There will be many suggestions. Some worth pursuing others not probable. That's the beauty of forums. There is a lot of knowledge out there. You graciously accept comments given with the right motive behind them (intentions to help) - rather than being dismissive and critical.

We all get that he is in a dire place in his health. But a phone call doesn't require movement and many doctors consult and can give their expert advice so that others can put into place what those suggestions may be.

Issie

 

[Cort]

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

That's really nice Carole. I was thinking about Ebola vs ME/CFS. I was thinking that those people were being ravaged by a horrific virus but they had been healthy a short time before. They had something to fall back on. People like Whitney have been severely ill for years...I think it just keeps taking its toll and taking its toll...

Interesting though that many people who seem "recover" from Ebola can still suffer from many medical problem they didn't have prior to getting infected. They look very much like ME/CFS patients.

 

[Cort]

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

It would be great to hear how she is doing now..

 

[Janet Dafoe]

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

Thank you Carole.

 

[Issie]

It would be great to hear how she is doing now..

I've tried to find out since I wrote this. I sent her a message and haven't heard from her. No new newspaper articles that I could find. So I'm not sure how she is. We all stopped that forum around the same time.

Issie

 

[Carole]

If there is orthostatic intolerance - most of us with it find we need to have our heads elevated at least some. Lying flat seems to make us worse. Many of us need oxygen and Cpap machines because we don't have enough O2 and because the autonomic system is faulty our brain doesn't tell us to breathe in our sleep. Compression garments help some and inflatable leg pumps to get oxygen and blood to our hearts and heads. Being aware of something can allow one to make positive changes in comfort at home. If we don't know those things - we can't do them.

When someone is in a desperate place with someone this critical, we reach out for answers. There will be many suggestions. Some worth pursuing others not probable. That's the beauty of forums. There is a lot of knowledge out there. You graciously accept comments given with the right motive behind them (intentions to help) - rather than being dismissive and critical.

We all get that he is in a dire place in his health. But a phone call doesn't require movement and many doctors consult and can give their expert advice so that others can put into place what those suggestions may be.

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

It is Dr. Blair Grubb- Thought he spec in POTS??? Maybe not.

Anyway-will ck on these two. Is there a long wait for New pt?

Thanks

Carole

 

[Carole]

It is Dr. Blair Grubb- Thought he spec in POTS??? Maybe not.

Anyway-will ck on these two. Is there a long wait for New pt?

Thanks

Carole

Issie- We are on the same page. I am on Cpap and also head is elevated all the time I am sleeping. An emmence help.

Please everyone-Let people state what has helped them and it may help. I have some of my Dr disagree with me on the Cpap machine. He may already be doing this.

Everyone is writing as we want to help-because WE CARE!!!!!!

Thank you Janet!!!

Carole

 

[Issie]

There is a long wait on Dr Goodman. The test by Dr Fry for the Protozoa can be sent to his lab. The test can be ordered. (He is a bioscientist and is doing a lot of research on this Protozoa. He has a stain he invented to test for this one.).

Dr Grubb, I've heard is very good. There is a doc in Birmingham, AL that is treating my niece with POTS. He treats similar to Dr Fry.

Issie

 

[Cort]

There is a long wait on Dr Goodman. The test by Dr Fry for the Protozoa can be sent to his lab. The test can be ordered. (He is a bioscientist and is doing a lot of research on this Protozoa. He has a stain he invented to test for this one.).

Dr Grubb, I've heard is very good. There is a doc in Birmingham, AL that is treating my niece with POTS. He treats similar to Dr Fry.

Issie

The problems mount with severe ME/CFS patients. For instance how to get Whitney to them? Even getting him to Stanford would be a horrendous undertaking. When you get this ill it's really difficult.

 

[Issie]

The problems mount with severe ME/CFS patients. For instance how to get Whitney to them? Even getting him to Stanford would be a horrendous undertaking. When you get this ill it's really difficult.

I think some of them would do a phone consult with his docs. That would be what I would push for. Dr Goodman works with docs all over the place. I'm sure some of the east coast docs would too. That's why I attached the list. Call and keep calling. Get as many people as possible in the picture. That's why I think this is great that you put it on the forum. Someone may have some ideas or connections.

I remember the desperation we felt when we nearly lost my sister. We told everyone what was going on and tried to follow any possibility. We found that help for her, thankfully.

Issie

 

[Janet Dafoe]

Issie- We are on the same page. I am on Cpap and also head is elevated all the time I am sleeping. An emmence help.

Please everyone-Let people state what has helped them and it may help. I have some of my Dr disagree with me on the Cpap machine. He may already be doing this.

Everyone is writing as we want to help-because WE CARE!!!!!!

Thank you Janet!!!

Carole

He has a cpap and was using it, but he can't any more. He can barely move. There are lots of things that he used to be able to do but he can't any more. And it's so sad because some of those things were helping him a little.

 

[Issie]

When my POTS is so bad and the tachycardia and nervous anxiety that it causes is in full swing - having that on your face is just too much. I have an oxygen concentrator with humidifier and that is less taxing to the nerves. I can use that and it gives help with the need of oxygen.

When you lie there for so long, your whole body hurts. Even your pinkie fingers. I've found that those beadey pillows that conform to your body helps. I have a big one for my back and smaller one that I put on another pillow for my head. It can be scrunched under your neck better. Gives good support yet doesn't make you hurt more. Also making sure arms are properly propped up and supported. A pillow under knees to take pressure off lower back. And as thin as he is, either pillow booties or putting his feet on another beadey pillow. It may help avoid sores.

I'm just trying to think of what I've learned both for myself and others I've cared for.

There are some meds that help with the surges with the autonomic system. I personally don't agree with the way most POTS people are treated/medicated. But if that part of it is unbearable, there are some meds that can help with that. . I can let you know what meds have worked for me.

If I can help, Let me know. My thoughts are with you.

Issie

 

[tatt]

faced with this sort of severe illness I think we all fear going there - and therefore are desperate to think there may be something the family have missed. But reading this I get the impression that they have probably already tried everything. I can certainly understand the problems in try to transport anyone this ill to hospital.

But since I share the fear and in the rather forlorn hope that there is something that may not have been considered - I have a suspicion that with this illness there will prove to be multiple problems for some people and that only if all are attacked either at once or in the right order is there any hope of success. I believe that I couldn't start to heal (very slowly) until I remedied a vitamin D insuffficiency and I've posted here an article about rituximab not working (in another context, not ME) when vitamin D deficiency is present. Anyone bedbound is going to be low in vitamin D unless it is supplemented and probably at a high level. In th uk our doctors offer very little so we learn not to rely on them.

I try to chip away at my problems by trying everything I can, especially anything to reduce inflammation. I know that for me laryngopharyngeal reflux, sometimes called ''silent reflux'' is part of the problem and one where raising the head of the bed (something that also helps with POTS) is a small benefit. Vitamin A is also important for immune function, I'm currently taking a prebiotic that may help and I've found NAC (n-acetyl-cysteine) helpful, possibly because of its effect on the liver. Magnesium is commonly deficient in those with ME and I take that sometimes. I eat a gluten free diet. There may be something in "sick building" syndrome, whether this is mold, dust mite or something as just identified, I know my health improves in places warm enough for me to spend time outdoors. Obviously that isn't going to be possible here but maybe try to bring that air indoors? I wonder if oxyygen therapy is worth a try, I'm not a fan of air conditioners because of the problems in maintaining them.

As the most promising looking thing around is rituximab I wonder if that has been tried, with vitamin D supplementation if there is deficiency?

I'd like to say that I really appreciate the effort this family is making and hope we will all benefit from it.

 

[Zach]

My heart goes out to Whitney and his brave and dedicated family.
Such people are the very best of human kind. If only the entire human population were as brave, dedicated, kind and altruistic, this would surely be a wonderful planet to live on.

The top-quality video and articles that were published via Palo Alto Weekly, were an incredible service to the ME patient community. I really hope they are seen and read widely. I can't thank those involved enough.
I'd especially like to thank Janet Defoe, and Ron Davis, for their dedication in raising awareness of the illness, and for the huge research plans.
It is awareness-raising, fund-raising and research that will ultimately make a difference to our community.

This forum thread has surprised me because it seems that even members of our community don't seem to understand the nature and complications involved in severe ME, or the lack of treatments available, or the utter lack of appropriate care facilities. So many patients have hit a brick wall when seeking treatment or care. So it is of no surprise that Whitney's family have been forced into the situation of being the primary care giver, despite the severity of symptoms.

I'm an ME patient of 11 years. A year ago, my health took a turn for the worse, and I am now almost entirely bed-bound, although I can usually tolerate brief periods of standing, so I can tentatively walk to my kitchen/bathroom a few times a day. I'm not nearly as severely affected as Whitney, but I seem to share some of his complications. I am intolerant of food: eating can exacerbate my ME symptoms, and provoke constant IBS, so I have a very limited diet, and I sometimes can't eat for half a day, or sometimes longer. Mental stimulation, including simply having social company, can sometimes antagonise my neurological symptoms, in quite a scary way; Mental stimulation can sometimes lead to what feels like a surge of neurotransmitters, causing transient panic-like feelings, followed by an exacerbation of all my symptoms, including the arthritic-like symptoms on my hips. I'm certain that if I described some of these symptoms in detail to my doctor, they would be classed as primary psychiatric issues. But I had typical ME without any nasty complications (i.e. simply exhaustion, flu-like symptoms, brain fog and post-exertional exacerbation) for 10 years before it took a turn for the worse and the complications started (i.e. localised and widespread pain, joint inflammation, food intolerance, IBS, and strange neurological symptoms). Even now, all of my symptoms and complications are typical of what many ME patients experience (i.e. post-exertional exacerbation, exhaustion, brain fog, pain, joint inflammation and intolerance of mental stimulation, etc.) The mental stimulation issues occur only occasionally for me, but it's scary when it happens, and I can sympathise with Whitney's experiences, and I think i understand. I also have joint pain, including arthritis-like symptoms on my hips, and a stiff back. I also have localised and widespread pain, which can flare up in a very disturbing way, after exertion or stimulation. If I put pressure on my hips (i.e. walk), all of my symptoms can flare up disastrously.

It seems that some people on this forum, don't recognise these symptoms as being part of ME, or are looking for other diagnoses.
But, it seems to me that Whitney is experiencing classic severe ME symptoms, but a very severe form.
As far as I understand, Whitney's situation is unusual, but in no way unique. Other families have been through similar experiences.

Whitney's family say that they have lost their social life. I'm not surprised. Their dedication is admirable and moving.
Unfortunately, I have no advice. It seems to me that the family are doing all the right things, and making sure that Whitney gets as much rest and peace as possible.
I wish you all the very best for the future, and I truly hope that Whitney will experience improvement.

I will watch Ron Davis' research developments with keen interest, and I'm very grateful for it.

 

[Issie]

This forum thread has surprised me because it seems that even members of our community don't seem to understand the nature and complications involved in severe ME, or the lack of treatments available,


It seems that some people on this forum, don't recognise these symptoms as being part of ME, or are looking for other diagnoses.
But, it seems to me that Whitney is experiencing classic severe ME symptoms, but a very severe form.
As far as I understand, Whitney's situation is unusual, but in no way unique. Other families have been through similar experiences.

You stated this perfectly. The signs of CFS/ME are the "symptoms" of this illness. Just like the symptoms of POTS has POTS as its defining label. Accepting the definition of an illness based on symptoms is not definitive. Many of CFS/ME and POTS symptoms overlap. Even the scientific markers of dysfunctional reactions within symptoms of the body can be measured in both illnesses. We know there are markers, we know there is dysfunction. We also know that we can lump a bunch of people together based on their symptoms and put a label on them. And then say there are different subsets based on those symptoms and maybe some other body response differences. But this isn't getting to the "CORE". It's still describing the symptoms.

With Lyme disease there is a known pathogen. A visible, tangible organism. You can lump those people together based on their symptoms too. But it has a known cause. The question is WHY does this organism cause issues in some and not in others. To get to the core on this one - it points to the autoimmune system. If it were working properly it would fight off this organism.

We can't let the symptoms of an illness and the label attached to it - be what we accept as the reason.

LYME = pathogens = inflammation = faulty immune system

POTS = Symptoms = ??????

CFS/ME = Symptoms = ??????

My guess to those equations is also faulty autoimmune response.

No, we well know the SYMPTOMS -we live with them daily too. We just refuse to let that be the end and accept them based on the label that has been given those symptoms. We want to get to the "CORE REASON" for those symptoms. I can talk all day long about this study or that study and what it determined to find being wrong with this marker or that marker. That just helps to define the symptoms. It takes all of that to make the whole picture. We need that research too. But what is the bottom line and what CAN we do about it.

We can do things on our own - right now - to address inflammation and the autoimmune system. It may not take care of all the symptoms. But it may address them and make things better. Do what we can to address what seems to be the issue. If there is something known to cause an issue (Lyme or other things - virus, bacteria etc) address them. But the main thing is trying to get the body to function properly so it will attack things on its own. And THEN there won't be any symptoms.

--------This is my approach and I've had issues since I was Very young and am now in my 50s. This IS making a difference for me.

Issie

 

[Valentijn]

Cort, is there a way to get a message to this family? So many people I've been in contact with POTS deteriorate to this level. When I was so bad, I was in a wheelchair, so weak I couldn't get myself up out of a chair.

Most ME/CFS patients do have some form of OI (orthostatic Intolerance). But that would not be a significant factor when laying down. In addition to usually having OI, all ME/CFS patients must have post-exetional malaise (PEM), which means that trivial amounts of exertion make us very sick afterward. In the case of very severe patients, they seem to be overexerting themselves simply by laying there, and are constantly in a state of severe disability due to that.

 

[Valentijn]

Just a thought- Why are they continuing with the same Physician -if he is not getting better? Even is he is weak
seeing someone else and getting another opinion would be worth it.

ME/CFS is an incurable disease. No doctor really knows how to make patients get better. The best they can do is symptom management and try some other treatments (antibiotics, antivirals, ampligen, rituximab, etc). But that can be tricky with severe and very severe patients who cannot physically withstand such experimentation.

There are also very few expect ME/CFS clinicians in the world. Many mild and moderate patients fly half-way around the world to see one. Obviously this is not an option for someone who is too ill to sit up, eat, or even speak.

 

[Valentijn]

What I do not understand is the parents not taking him to Stanford regardless of the procedural issues.
They have to make the decision. Not going could be critical-which it looks like he is. You do everything, even if he is uncomfortable doing it. He sure isn't getting better at home.

If the doctors at Stanford won't acknowledge the severity of his illness enough to accommodate a minor procedural irregularity regarding paper work, there's no chance that they would take his illness seriously, nor accommodate his needs during such a visit. It would be a waste of very precious energy. In a moderate or severe patient, such a wasteful trip would also lead to a crash ... and in a very severe patient, such a crash might prove fatal. I don't think you are understanding ME/CFS, especially in the very severe form.

 

[Issie]

Most ME/CFS patients do have some form of OI (orthostatic Intolerance). But that would not be a significant factor when laying down. In addition to usually having OI, all ME/CFS patients must have post-exetional malaise (PEM), which means that trivial amounts of exertion make us very sick afterward. In the case of very severe patients, they seem to be overexerting themselves simply by laying there, and are constantly in a state of severe disability due to that.

It's not the OI with laying that would be the biggest factor here. You are right there may not be as many issues with blood pressure. (With POTS blood pressure is not the determining factor. It's the heart rate response to upright posture.) The key point here is the Autonomic Nervous System. Its affect on every function of every organ of the body. If that has gone somewhat off balance ----- then the question is WHY? Is it a compensatory response. If it is and is a protective response - then blocking that compensation will make one sicker. (That's where I disagree with traditional treatment of POTS. Yes those responses are extremely uncomfortable. But they may be keeping me alive and more functional. Blood flow to heart and head are important.). It's just one piece of the puzzle and OI and POTS are still one of the Symptoms - not the cause. We have to get to the CORE.

We can put a bandaid on the symptoms. We can make ourselves more comfortable with those symptoms. But until we get to the cause we won't fix those symptoms we just cover them over with a bandaid. I want my bandaids when I need them. And that's what some are suggesting here - what bandaids make them feel better - those things don't fix the underlying issues.

Issie

 

[Carole]

faced with this sort of severe illness I think we all fear going there - and therefore are desperate to think there may be something the family have missed. But reading this I get the impression that they have probably already tried everything. I can certainly understand the problems in try to transport anyone this ill to hospital.

But since I share the fear and in the rather forlorn hope that there is something that may not have been considered - I have a suspicion that with this illness there will prove to be multiple problems for some people and that only if all are attacked either at once or in the right order is there any hope of success. I believe that I couldn't start to heal (very slowly) until I remedied a vitamin D insuffficiency and I've posted here an article about rituximab not working (in another context, not ME) when vitamin D deficiency is present. Anyone bedbound is going to be low in vitamin D unless it is supplemented and probably at a high level. In th uk our doctors offer very little so we learn not to rely on them.

I try to chip away at my problems by trying everything I can, especially anything to reduce inflammation. I know that for me laryngopharyngeal reflux, sometimes called ''silent reflux'' is part of the problem and one where raising the head of the bed (something that also helps with POTS) is a small benefit. Vitamin A is also important for immune function, I'm currently taking a prebiotic that may help and I've found NAC (n-acetyl-cysteine) helpful, possibly because of its effect on the liver. Magnesium is commonly deficient in those with ME and I take that sometimes. I eat a gluten free diet. There may be something in "sick building" syndrome, whether this is mold, dust mite or something as just identified, I know my health improves in places warm enough for me to spend time outdoors. Obviously that isn't going to be possible here but maybe try to bring that air indoors? I wonder if oxyygen therapy is worth a try, I'm not a fan of air conditioners because of the problems in maintaining them.

As the most promising looking thing around is rituximab I wonder if that has been tried, with vitamin D supplementation if there is deficiency?


I'd like to say that I really appreciate the effort this family is making and hope we will all benefit from it.

Tatt- What do you find that helps the most with the Reflux? I have head of bed elevated and Cpap with humidifier. Also take extra Vit A. Find that I cannot eat a even moderate meal within 4 hours of bedtime. I am Gluten and Meat Free. Also many Probiotics.

Thanks,

Carole