"I'm in a Race to Figure Out a Cure Before my Son Dies" Ron Davis BBC Interview on Son with ME/CFS

[Cort]

[fright] [/fright] The BBC interviewed Ron Davis over the phone on the condition of his son with severe ME/CFS, Whitney Dafoe. Ron explains that because the mental energy needed to read print on a shirt is so taxing for Whitney that it causes him to relapse, he and his wife Janet Dafoe, don't wear clothes with printed materials on them. Whitney communicates with them via cards.

Ron talks about how Whitney get ill, the dismissive attitude physicians have had to Whitney and the race he's in to find a cure before Whitney dies...It's just heartbreaking. BBC interviewers can be tough but this one is very sympathetic.

• Hear the interview here

 

[Janet Dafoe]

No more cards. He can't communicate at all any more.
BTW, his last name is Dafoe.

 

[ScottTriGuy]

No more cards. He can't communicate at all any more.
BTW, his last name is Dafoe.

I have no doubt all potential therapies have been considered by Davis for his son, but just in case, I wanted to share that laser therapy on my brain stem changed my life. I had read about laser therapy in Doidge's book ( http://www.normandoidge.com/ ) about neuroplasticity. It has not cured me, but has allowed me to be far more functional.

There are 2 significant dates in my life: August 9, 2012 - the first day I was sick with m.e. Eventually I became house-bound.

And April 22, 2015 - the first day I had daily laser therapy on my brain stem. Three days later I was able to walk 15 mins without pem. I cried from joy.

Of course, my n = 1.

 

[Tina]

No more cards. He can't communicate at all any more.
BTW, his last name is Dafoe.

So sorry for you and your family's pain. My prayers are with you and that some day soon they find a way to help us all soon.

 

[Tina]

[fright]View attachment 738 [/fright] The BBC interviewed Ron Davis over the phone on the condition of his son with severe ME/CFS, Whitney Davis. Ron explains that because the mental energy needed to read print on a shirt is so taxing for Whitney that it causes him to relapse, he and his wife Janet Dafoe, don't wear clothes with printed materials on them. Whitney communicates with them via cards.

Ron talks about how Whitney get ill, the dismissive attitude physicians have had to Whitney and the race he's in to find a cure before Whitney dies...It's just heartbreaking. BBC interviewers can be tough but this one is very sympathetic.

• Hear the interview here

So very sad.

 

[Tina]

I have no doubt all potential therapies have been considered by Davis for his son, but just in case, I wanted to share that laser therapy on my brain stem changed my life. I had read about laser therapy in Doidge's book ( http://www.normandoidge.com/ ) about neuroplasticity. It has not cured me, but has allowed me to be far more functional.

There are 2 significant dates in my life: August 9, 2012 - the first day I was sick with m.e. Eventually I became house-bound.

And April 22, 2015 - the first day I had daily laser therapy on my brain stem. Three days later I was able to walk 15 mins without pem. I cried from joy.

Of course, my n = 1.

Scott, where you diagnosed with any type of brain stem issue such as Chiari Malformation? How did you come upon this mode of treatment?

 

[Cort]

I have no doubt all potential therapies have been considered by Davis for his son, but just in case, I wanted to share that laser therapy on my brain stem changed my life. I had read about laser therapy in Doidge's book ( http://www.normandoidge.com/ ) about neuroplasticity. It has not cured me, but has allowed me to be far more functional.

There are 2 significant dates in my life: August 9, 2012 - the first day I was sick with m.e. Eventually I became house-bound.

And April 22, 2015 - the first day I had daily laser therapy on my brain stem. Three days later I was able to walk 15 mins without pem. I cried from joy.

Of course, my n = 1.

Thanks for sharing Scott. I've just gotten through the first two chapters of Doidges latest book- stunning stuff...Looking forward to reading that.

 

[Cort]

No more cards. He can't communicate at all any more.
BTW, his last name is Dafoe.

Wow....
Such an incredibly difficult situation...

 

[ScottTriGuy]

Scott, where you diagnosed with any type of brain stem issue such as Chiari Malformation? How did you come upon this mode of treatment?

No to Chiari diagnosis. I'd never heard of it so googled the symptoms, I have some of them sort of so will mention it to my doc next time. Thanks.

In The Brain's Way of Healing, Doidge profiled Dr Fred Kahn (http://bioflexlaser.com/about-us/) and his use of lasers for therapy - laser's are anti-inflammatory, increase ATP production, and modulate cellular activity among other benefits - all things I figured would affect my symptoms.

Fortunately Dr Kahn lives in my city so I was able to book an appointment and start treatments that same appt. On the 4th day I started renting a home unit and have been using almost daily since.

You may find this PR thread informative:
http://forums.phoenixrising.me/index.php?threads/led-red-intranasal-light-therapy.24195/

I'm looking forward to this product being released next year, also profiled by Doidge:
http://www.heliusmedical.com/divisions/neurohabilitation/pons-device

 

[ScottTriGuy]

Thanks for sharing Scott. I've just gotten through the first two chapters of Doidges latest book- stunning stuff...Looking forward to reading that.

Life changing for me.

Hope you find stuff in there that'll work for you.

 

[Merida]

No to Chiari diagnosis. I'd never heard of it so googled the symptoms, I have some of them sort of so will mention it to my doc next time. Thanks.

In The Brain's Way of Healing, Doidge profiled Dr Fred Kahn (http://bioflexlaser.com/about-us/) and his use of lasers for therapy - laser's are anti-inflammatory, increase ATP production, and modulate cellular activity among other benefits - all things I figured would affect my symptoms.

Fortunately Dr Kahn lives in my city so I was able to book an appointment and start treatments that same appt. On the 4th day I started renting a home unit and have been using almost daily since.

You may find this PR thread informative:
http://forums.phoenixrising.me/index.php?threads/led-red-intranasal-light-therapy.24195/

I'm looking forward to this product being released next year, also profiled by Doidge:
http://www.heliusmedical.com/divisions/neurohabilitation/pons-device

Scott,
I absolutely believe your observations concerning your improvement with laser treatments. I investigated and tried several treatments after a friend reported improvement with some laser brain treatment. However, a friend is an engineer who has done extensive work/ development of lasers and he feels that these types of cold, medical lasers can only penetrate the very surface layers of skin. I had no response to cold laser, but hope others can add their experiences.

 

[ScottTriGuy]

Scott,
I absolutely believe your observations concerning your improvement with laser treatments. I investigated and tried several treatments after a friend reported improvement with some laser brain treatment. However, a friend is an engineer who has done extensive work/ development of lasers and he feels that these types of cold, medical lasers can only penetrate the very surface layers of skin. I had no response to cold laser, but hope others can add their experiences.

Other's experiences:

http://forums.phoenixrising.me/index.php?threads/led-red-intranasal-light-therapy.24195/

 

[Tina]

No to Chiari diagnosis. I'd never heard of it so googled the symptoms, I have some of them sort of so will mention it to my doc next time. Thanks.

In The Brain's Way of Healing, Doidge profiled Dr Fred Kahn (http://bioflexlaser.com/about-us/) and his use of lasers for therapy - laser's are anti-inflammatory, increase ATP production, and modulate cellular activity among other benefits - all things I figured would affect my symptoms.

Fortunately Dr Kahn lives in my city so I was able to book an appointment and start treatments that same appt. On the 4th day I started renting a home unit and have been using almost daily since.

You may find this PR thread informative:
http://forums.phoenixrising.me/index.php?threads/led-red-intranasal-light-therapy.24195/

I'm looking forward to this product being released next year, also profiled by Doidge:
http://www.heliusmedical.com/divisions/neurohabilitation/pons-device

Scott, I was imagining this treatment to be invasive, but I think I am very confused and will now go research it! Thanks.

 

[Cort]

There's so much hope with the new technology emerging. It's amazing what is showing up.

No to Chiari diagnosis. I'd never heard of it so googled the symptoms, I have some of them sort of so will mention it to my doc next time. Thanks.

In The Brain's Way of Healing, Doidge profiled Dr Fred Kahn (http://bioflexlaser.com/about-us/) and his use of lasers for therapy - laser's are anti-inflammatory, increase ATP production, and modulate cellular activity among other benefits - all things I figured would affect my symptoms.

Fortunately Dr Kahn lives in my city so I was able to book an appointment and start treatments that same appt. On the 4th day I started renting a home unit and have been using almost daily since.

You may find this PR thread informative:
http://forums.phoenixrising.me/index.php?threads/led-red-intranasal-light-therapy.24195/

I'm looking forward to this product being released next year, also profiled by Doidge:
http://www.heliusmedical.com/divisions/neurohabilitation/pons-device

 

[Forebearance]

No more cards. He can't communicate at all any more.
BTW, his last name is Dafoe.

Thinking of you and your family, Janet.
It seems like we all can't stand it that Whitney has to go through this.

 

[kim.der.acquiro]

My sister Kelly was as sick as your son in the early 90s. She'd had a raging shingles outbreak that wouldn't go away. Our internist finally sent her to an infectious diseases specialist who also specialized in CFIDS (ME/CFS). He put her on the maximum dose of acyclovir (800 mg once a day), and gave her oral interferon. The combination of antiviral and interferon was very important. We don't know exactly what kind of interferon he used. There is an infectious diseases/ME/CFS specialist in California, John Chia, MD who has used interferon on ME/CFS patients. We wrote to him recently to ask if he'd share the protocol he used, but we haven't heard back from him. He said it was expensive, but resulted in remission. The main drawback was that the remission only lasted 6 months, and then the patient had to re-treat. His contact information is: 23560 Crenshaw Blvd Ste 101, Torrance, CA 90505 (310) 784-5880. We found out later that Dr. Rubin really didn't think Kelly was going to make it - she was that sick. I wish someone would do some studies of interferon in ME/CFS. It really helped both of us, but we haven't been able to get any other doctors to let us have it since, and Dr. Rubin has retired. Now days there are several other antivirals available. I just started taking amantidine (100 mg twice a day) and it's really helping me. There's also famotidine, valganciclovir, and valacyclovir. (Kelly tried valacyclovir and it really didn't work for her.) Antivirals helps with the fatigue and pain. If your son is having pain I recently found a good list of medications at the National Fibromyalgia Research Associates website: http://www.nfra.net/fibromyalgia_meds.htm
Another thing that has helped me is IV therapy - especially with magnesium and glutathione. I found a Naturopathic Physician that does IV therapy. I felt better during the first IV. It helps that fast.
Best Wishes,
Kim & Kelly Derrick

 

[Merida]

Other's experiences:

http://forums.phoenixrising.me/index.php?threads/led-red-intranasal-light-therapy.24195/

Thanks! I read through much of the comments. It would be great to get a blinded study, as I appreciate placebo effects and the potential power of positive thought.

 

[CoCreative]

So sorry to hear this story. I wonder what else has been done, besides working on the infections with antimicrobials/antiparasitics etc. which was mentioned in the interview?
Regarding the laser therapy:

laser's are anti-inflammatory, increase ATP production, and modulate cellular activity among other benefits - all things I figured would affect my symptoms.

I had a hunch that part of the mechanism behind the therapeutic effect is activation of the body's antioxidant response system - e.g. it can boost Nrf2-regulated gene expression. A quick search brought up this study which I believe is currently in progress: http://grantome.com/grant/NIH/R01-NS086929-01A1 The researchers propose that: "Low-level Laser Therapy (LLLT) stimulates mitochondria-derived nitric oxide (NO) release to inhibit the activation of NLRP3 inflammasome (via S-nitrosylation of NLRP3) and to activate Nrf2 (via S-nitrosylation of Keap1 and Nrf2 release). We further hypothesize that LLLT can exert its beneficial actions by boosting Nrf2-regulated gene expression (e.g. Trx and SOD2) to counteract the NLRP3 inflammasome cascade and the oxidative damage induced by dysfunctional mitochondria after Global Cerebral Ischemia (GCI). The proposed preclinical studies would advance the field by being the first to determine the potential efficacy of LLLT for protection of the brain following GCI."
Sounds reasonable to me. I didn't read through the thread on red LED & Laser therapies, but if these lasers are activating the antioxidant response system, my guess is it can benefit many people but may be too harsh for others (like other methods that induce the Nrf2 related pathways).

 

[weyland]

There is an infectious diseases/ME/CFS specialist in California, John Chia, MD who has used interferon on ME/CFS patients. We wrote to him recently to ask if he'd share the protocol he used, but we haven't heard back from him.

I think he's tried several types of interferon, but he describes the use of interferon-α in this paper. I don't think he often uses it anymore because he's found that oxymatrine provides a similar response rate with less side effects.

 

[kim.der.acquiro]

I think he's tried several types of interferon, but he describes the use of interferon-α in this paper. I don't think he often uses it anymore because he's found that oxymatrine provides a similar response rate with less side effects.

Thanks for the link to the paper. I know he uses Equilibrant now. I tried it, but can't take it. Licorice and astragalus give me tachycardia and hypertension. I tried oxymatrine on its own, but it did nothing for me. That's why I wrote to him to ask about the interferon. It worked for us before. It may not be necessary because amantidine seems to be helping. It seems to be working better than the acyclovir I was given before.