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

[Issie]

Definitely one of the more likely options, given that we can have remissions and that there is such a large gender disparity. But other culprits might be chronic infection, or some weird new form of immune dysfunction which we don't even have a framework to comprehend yet. One problem with treating for presumed autoimmunity, when the specific cause of ME/CFS is not yet clear, is that the treatments aimed at doing that in a non-targeted manner are basically suppressing the immune system. That can be dangerous if the cause is actual infectious, or if it is featuring both infectious and autoimmune components, as it could allow infections to run wild when the immune system is deliberately surpressed.

And then there's the issue of figuring out if everyone has the same disease. Do 67% of ME patients have a strictly autoimmune disorder, while the other 33% have a primary or secondary chronic infection? Is there a different cause or additional infective component in severe patients versus mild? We need answers, research, funding

Here's the tricky part of the immune system. I have hypogammaglobulinemia (underactive immune system) which means amongst other things pneumonia could kill me. I can't fight it. Of the 20 something strains tested on me I only had antibodies to 6 and not enough to fight. I had to acknowledge that the doctor told me this could kill me if I get it. I also have my immune system attacking me (overactive). I have alopecia and vitiligo. I have chronic Lyme and co-infections and another protozoa - that my immune system is not detecting. I have HyperPOTS, MCAS, EDS and there are others. (But you get the idea. Very complex.) So on one hand it's over active and on the other hand underactive. It's a balancing act between what to do. But, seems what I'm doing is working. I'm more functional than Ive been in over 30 years. I have been mostly house bound and in a wheelchair with parts of my illnesses. Im now having a life. Some of us can come back from this. Its more than one thing. There are many pieces to this puzzle. But, they all make up the whole. But, the bottom line is if the Autoimmune system was working properly ----the body would detect things it should and the body would function as optimally as is possible given our imperfect state. Addressing inflammation and the immune system has been what is working for me.

Issie

 

[Carole]

Here's the tricky part of the immune system. I have hypogammaglobulinemia (underactive immune system) which means amongst other things pneumonia could kill me. I can't fight it. Of the 20 something strains tested on me I only had antibodies to 6 and not enough to fight. I had to acknowledge that the doctor told me this could kill me if I get it. I also have my immune system attacking me (overactive). I have alopecia and vitiligo. I have chronic Lyme and co-infections and another protozoa - that my immune system is not detecting. I have HyperPOTS, MCAS, EDS and there are others. (But you get the idea. Very complex.) So on one hand it's over active and on the other hand underactive. It's a balancing act between what to do. But, seems what I'm doing is working. I'm more functional than Ive been in over 30 years. I have been mostly house bound and in a wheelchair with parts of my illnesses. Im now having a life. Some of us can come back from this. Its more than one thing. There are many pieces to this puzzle. But, they all make up the whole. But, the bottom line is if the Autoimmune system was working properly ----the body would detect things it should and the body would function as optimally as is possible given our imperfect state. Addressing inflammation and the immune system has been what is working for me.

Issie

Issie- As usual you are right on. Most of your symptoms sound like mine. Could Mast Cell be in there somewhere
with me?

The secret is having the right Dr. to treat you on an ongoing basis, so when something flares with different
symptoms-they know you well enough to know what tests to recheck. Sometimes- I don't know when I am in inflammation until my Gut acts up.

The Plant based diet alone has helped me with you advice on that. I do find that too much fruit with the acidity
causes Esophogeal issues and Gut problems. have to start and stop and reevaluate each step. I had been on Gluten free diet for about 4 years before I went on Plant based.

Thank you.
Carole

Carole

Sounds like you have the right Dr. and the right attitude.

 

[Carole]

Carole in the uk doctors presecribe by generic name, it's a NHS requirement. In America it would be Prilosec, Zegerid or Omesec according to google. I think lansoprazole
is considered to be better but not enough so to justify the extra cost (in the uk). It's Novartis in America.

Tatt- Just revisited my file on taking the Prilosec. It caused me Rapid heartbeat from a few years ago. I have a problem
with that and it also killed off the healthy bacteria in my Gut.

It did work when I took it and then came the serous Gut issue. I am taking VSL#3 Probiotic med food,
and 2-3 other Probiotics. No milk or dairy products, Gluten free and Plant based diet. Still have flares
when I have STRESS.

Cpap still seems to be one of my biggest reservoirs of help.

Thank you for your advice. Much appreciated.

Carole

Carole

 

[Cort]

Definitely one of the more likely options, given that we can have remissions and that there is such a large gender disparity. But other culprits might be chronic infection, or some weird new form of immune dysfunction which we don't even have a framework to comprehend yet. One problem with treating for presumed autoimmunity, when the specific cause of ME/CFS is not yet clear, is that the treatments aimed at doing that in a non-targeted manner are basically suppressing the immune system. That can be dangerous if the cause is actual infectious, or if it is featuring both infectious and autoimmune components, as it could allow infections to run wild when the immune system is deliberately surpressed.

And then there's the issue of figuring out if everyone has the same disease. Do 67% of ME patients have a strictly autoimmune disorder, while the other 33% have a primary or secondary chronic infection? Is there a different cause or additional infective component in severe patients versus mild? We need answers, research, funding

So many facets to explore. At this point I might bet on a weird form of immune dysfunction. If it's autoimmunity my bet would be on Fluge/Mella's hypothesis that it's effecting the blood vessels.

 

[tatt]

the problem with compassion and rest as the treatment for ME is that Witney doesnt seem to be getting better on it. Personally I believe that deconditioning can make ME worse but it's incredibly hard to avoid deconditioning when someone is so ill that very minor activities (like sitting up or watching tv) can cause problems. Witney has obviously got to the stage where virtually everything is a problem, possibly including the activity involved in breathing. Rest wasn't helping me when I was most sick, sleep wasn't refreshing. I began to improve (painfully slowly) when I supplemented with vitamin D and I wish I'd taken more of it and sooner.

Witney's parents are looking really hard at how people with ME differ from healthy people. Apart from trying rituximab, something they may already have done, that seems to offer the most promise for finding something they can change.

 

[weyland]

NO ONE REALLY KNOWS YET WHAT WHITNEY HAS.

I think it's quite clear he has severe ME.

This is why in most cases- Immune Globulin works.

The bulk of IVIG trials in CFS have shown it to be ineffective. The recent AHRQ treatment review pointed this out.

 

[Cort]

the problem with compassion and rest as the treatment for ME is that Witney doesnt seem to be getting better on it. Personally I believe that deconditioning can make ME worse but it's incredibly hard to avoid deconditioning when someone is so ill that very minor activities (like sitting up or watching tv) can cause problems. Witney has obviously got to the stage where virtually everything is a problem, possibly including the activity involved in breathing. Rest wasn't helping me when I was most sick, sleep wasn't refreshing. I began to improve (painfully slowly) when I supplemented with vitamin D and I wish I'd taken more of it and sooner.

Witney's parents are looking really hard at how people with ME differ from healthy people. Apart from trying rituximab, something they may already have done, that seems to offer the most promise for finding something they can change.

There may be some good news for him. They've been doing a bunch of specialized tests on him. They discovered some metabolites that are way, way .....way off! They may provide an opportunity for treatment....I believe Rituximab did not work out.

 

[weyland]

There may be some good news for him. They've been doing a bunch of specialized tests on him. They discovered some metabolites that are way, way .....way off! They may provide an opportunity for treatment....I believe Rituximab did not work out.

Interesting. Even an n=1 of the OMF big data study would probably be really enlightening. I wonder if this is what they've done? I'd love to know what they found.

 

[tatt]

good news. Still like to know his vitamin D levels though. I've posted this elsewhere but it's worth repeating http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4427945/

Going to post a copy to my gp, who still thinks I'm nuts for saying vitamin D can be important for more than just bone stength

 

[Jody Davison]

What a great photographer! Is it possible to purchase a copy of the Whitney's photo of the forest? I would prize it most desperately, especially considering who took the photo. I wish recovery for Whitney and his family, as I have been most fortunate to find. All my best, Jody Davison

 

[Cort]

Interesting. Even an n=1 of the OMF big data study would probably be really enlightening. I wonder if this is what they've done? I'd love to know what they found.

They've been looking at Whitney for awhile - I believe they've done quite a lot of work on him. My sense was the very low amino acid levels were the first thing that jumped out this strongly.

 

[binabik]

Hi, have you heard of LDN - Low Dose Naltrexone. It's not a cure but can make a big difference . I have been taking it for 18 months and it's really helping.

 

[Forebearance]

Dear Janet,
If you're still reading this thread, the article in the Palo Alto Weekly really touched me. Thank for you doing it.
I want to send a big bunch of love to your family.
Forebearance

 

[Janet Dafoe]

What a great photographer! Is it possible to purchase a copy of the Whitney's photo of the forest? I would prize it most desperately, especially considering who took the photo. I wish recovery for Whitney and his family, as I have been most fortunate to find. All my best, Jody Davison

He used to sell them, but he is unable to print them or do anything like that right now. I'm sure he'd love to when he gets better! Thank you for your appreciation of his photography. I love it too!

 

[Seven]

I am curious for this severe cases because if I would not take my meds I would be in bed so I wonder if they tried some kind of OI meds and didn't work or just that they never tried an OI drug and don't know about it (combo of Florinef+vassocontrictors (or dilators based on case) +beta blocker or calcium channel blockers (based on case).
Without OI meds:
I cannot talk (it crashes me until I shake unconsciously a seizure like thing).
Noise sensitivity and some light but mostly noise
Unable to sit or walk (I have to be mostly vertical).
I drop everything I grab, Sleep issues, cannot even think, memory issues ......... I would be bed ridden.

I went from being in bed about 2 to 3 months to walking 2 miles next day, just taking OI meds. So I am just curious why this is not like standard ME try this first (Dr. Grubb's work is very helpful).

Note: I started very LOW and SLOW (took 3 years to get the protocol I am on now) so I didn't have that initial crazy reaction some people have. I also started in this order: florinef, then midodrine, Increased florinef, then increased midodrine 5 times every few months, then Beta Blocker.