Christmas - Boxing Day Stories 2017

Overnight visitors

Those lights broke down 2 days before Christmas.  I had them 2 weeks all up.

The first time ever Milo has ruined food she was not supposed to get at, at the table.  Butter Icing, yum!

 

If you read this paper, you will find out Borrelia Infection has stages like cancer if left unchecked

Helen, Marlene, Beau, Brett, Bev and Kerry visiting the man in a coma.  I sent a card with Scott after he came back.

Roger was brought out of the coma on Boxing Day in Toowoomba. Roger was discharged from Jandowae Hospital where he was born, two days ago.  He's taken a journey West via ambulance via Dalby Hospital as he has improved but I knew none of that while it was happening.  They are calling it a miracle and back from the dead but I think he hopes that death wasn't the case because there was too much of nothing there.

Post-sepsis syndrome? Too early to tell but the only main problem he has is not being able to walk properly.  Now we both own wheelie walkers.  Actually Sharon has mine at the moment because she is dying at Jan's place with lung cancer.  I haven't needed the walker since I started taking steroids full-time.  Sharon has not been given long to live and I will miss her.  The diagnosis was only 2 weeks ago but it was obvious something terrible was wrong with her.  She had already stopped eating.  She was measured at 35kg.

The circle of life has brought Roger back full circle to where he knows so many people from the past.  It seems he will have a trial living in the 3rd house on Ben's farm to see if he can manage. Zach and Red (?) have the second house because they run the property these days with Ben retired. The mind boggles at how a step-son of Roger's could end up managing a million dollar property, not that I know how much a huge farm is worth.  It was my kids who spent time with the Tanners but I guess it solved a problem for two people.   Zach isn't exactly a city person having lived in Clifton-Nobby.  The house where Roger will be is Ben's Mum's old house, perhaps the original farm house and he stays there whenever he goes out there.  Back to Jandowae - Burra Burri, with Bev for the first two weeks.  Without Bev when she goes back to work.

Merry Christmas Everyone. Enter recovery phase.

We pretty much all know the behavioral ways to recover from or reduce the length of a crash or flare are pretty simple. Depending on how hard you've been hit they consist of things like cutting down activities (just say No!), reducing stimulation (turning off TV, music, turning lights down), getting to bed earlier, and reducing stress (meditation, visualization, stopping catastrophic thought patterns).
The question this resource asks is whether we can do better than just waiting out a crash? There are certainly no guidelines on how to do that but some ideas are out there. First check out suggestions on how to recover from a crash from Hip, a patient who has studied the disease extensively, then from a blog by a PhD, and finally from a survey taken from the ME/CFS/FM communities.
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From PEM Busters for Physical Exertion

1. Creatine hydrochloride - 2 grams 
2. Citrulline - 1000 mg 
3. Branched-chain amino acids (BCAA) - 5 grams 
4. CoQ10 - 800 mg 
5. Sodium bicarbonate - ¼ teaspoon (1.5 grams) 
6. Catalase - 600 mg (taken after exercise) 
7. D-ribose - (5 grams three times daily) 

All the above should help reduce PEM from physical exertion. These supplements might be particularly efficacious at preventing PEM if taken an hour or so before doing some unavoidable physical exertion.

RATIONALE: PEM Busters Work in Part by Neutralizing Lactate or Reducing its Production 

PEM Busters for Mental Exertion (eg: hectic social or professional events):

• Prednisone at a dose of 20 mg or so taken 4 hours before the event. Some ME/CFS patients have vouched this works very effectively and reliably (though others report ill effects from this corticosteroid drug). See this thread. But also see the warning in this post (which cautions against using prednisone for any extended period of time, and warns that the PEM protective effects do not work for the whole day, they seem to wear off after about 6 to 8 hours).

From Mitochondrial Dysfunction, Post-Exertional Malaise and ME/CFS by Lucy Duchene -for ME/CFS/FM patients with mitochondrial dysfunction

Recovery from prostration fatigue

• Vitamin B-1 (thiamine) (100 mg twice a day)
• Vitamin B-2 (riboflavin) (100 mg) 
• Biotin (5 mg twice a day) 

Postponing build-up of lactic acidosis

• Time-release guaifenesin (600-800 mg) 82

Dr. Goldstein's "Resurrection Cocktail"

Dr. Goldstein's "Resurrection Cocktail" is a different kind of crash buster. It was an IV push that helped to get really sick patients - people who are essentially in a severe crash all the time - out of their beds. It was not a cure - just a temporary aid - but it did get them going for a time.

• Ketamine
• IV ascorbate
• IV lidocaine
• IV thyrotropin- releasing hormone (which raises all biogenic amines plus acetylcholine)
• Nimotop
• Neurontin

Find out more about his "Resurrection Cocktail" and why he chose the ingredients he did.

Further details and associated research papers for each supplement are available on Cort Johnson's Blog Forum from where I copied this extract.  Cort Johnson's research summaries and explanations are highly respected in the chronic illness community by patients, researchers, pharmaceutical and health supplement industries and doctors.... especially doctors who are also patients.

Unfortunately the only way to get the prescription and IV services described above is to go to an alternative medicine practitioner who is also a General Practitioner (Doctor) or an ME/CFS expert specialist.  Mainstream medicine provides no treatment at all and the ME/CFS specialists are difficult to find unless you are able to travel overseas and attend a specialised clinic.  A naturopath or osteopath may be able to service some of these recommendations.  Lyme disease experts usually have a background in ME/CFS and fibromyalgia as well as tick-borne diseases.  Good Luck and Happy New Year.