The daily routine November 2019

Down at the end of this blog entry I wrote: "I should perhaps have begun this blog entry with this recommendation of gelatin. And perhaps written no more..." Consider heading down there now.

This is an attempt to set out a daily or longer pattern of medications and supplements. A snapshot in an evolving process. Most of it to support mitochondrial performance, give my system capacity to find the rails. The Canberra doctor who supported this two decades ago made the observation: "we are not trying to get your system back on the rails. We are not even pointing your system at the rails. We are giving your system the strength to find the rails by itself." There are also substances to deal with pain.

This is in part by theme, but following the clock around. I have recently begun using an app called Dosecast which has enabled me to be much more orderly in taking the right things at the right time. I am using the free version of Dosecast, which is adequate.

0600

Panadol Osteo, slow release 665mg paracetamol [acetaminophen], two tablets three times a day, keeping total under 4gms a day, beyond which there is risk of liver damage. This is just to manage pain. Supplemented by soluble aspirin sipped in the afternoon. At times using oxycodone or clonazepam for breakthrough pain, though preferably getting warm and waiting rather than stronger medications. There is particular risk from my neck if at the wrong angle or cold in the night. Or lower back if I dare to walk far.

Somac, to avoid stomach damage from prednisone, see next.

Prednisone. While taking prednisone is disruptive to all the processes I have tried to follow for mitochondrial performance, I discovered when given a course after a nasal operation in 2013 that running a prednisone course to 30mg took away all the symptoms, all the crappy symptoms of everything and gave me energy to exercise. This has continued to be the case and I have used courses espcially to make travel possible (such as recorded here) ... possible only with a course of prednisone to 25mg. I am currently weaning down from 25mg by steps of 2.5mg a week. Using the Dosecast app this can be done in an orderly manner. But, currently at 15mg/day I seem to be encountering some problems of the fatigue wall and pain requiring oxycodone.

Tertroxin, the active thyroid hormone T3. While this is commonly used in CFS in the US (trade name Cytomel) it has been very difficult to get it prescribed in Australia. I use a 20 microgram tablet every two days, nibbling it bit by bit. To take 10mcg once a day risks interfering with natural production. I also take 50mcg of T4, the storage thyroid hormone, on Mondays, Wednesdays and Fridays, so the combination is close to natural thyroid, which is unobtainable.

Nystatin capsule. Because I have needed antibiotics because of tooth nerve infection and because of the long term use of prednisone, I have developed thrush in mouth and a fungal infection under a toenail, so taking this oral antifungal. Capsule form so I can bite it open in the mouth. I am also applying clove oil via cotton bud, under the toenail. Also, to restore gut flora, taking probiotics.

0800

The separation from 0600 is mainly to spread the load.

Vitamin E, 1000iu. You need to find if possible a multi-tocopherol form, if not, a d tocopherol. Most of the beauty products advertised as containing vitamin E contain cheap and useless molecular forms, most comonly a reverse molecule of the a form. See my 'mandala' at the top of the blog. Less frequently I take vitamin A.  Adequate vitamin E sustains vitamin A levels. There is muddled writing about vitamin E. Be aware that so called recommended daily allowances of various things have a flimsy origin in measurement of the diets of people in American cities in the 1950s. Be aware that vitamin E is an anticoagulant and if facing an operation you should pause the vitamin E as also aspirin and NSAIDS.

Prednisone. Prednisone's half life is less than 24 hours. To try to avoid a drought at the end of the night, I am currently taking a bit at 0600 and a bit at 0800. I tried to take the second and smaller portion at midday but as a result could not sleep. You take it in the morning.

Magnesium threonate. Magnesium is very important. It requires a separate essay. The key thing is that without adequate magnesium you cannot manage calcium well. The first question is what form of magnesium is best absorbed. Magnesium chloride and magnesium sulphate [Epsom Salts] are ideal in the bath but if you drink the bath water you may get diarrhoea. The threonate form is only recently available. It is the only form of magnesium that crosses the blood brain barrier. Animal experiments have shown it helps with pain and memory. Positive results are coming in from human clinical trials, just search <clinical trials magnesium threonate>. This is an example. Threonine has positive value too, for example in relation to irritable bowel issues. Magnesium chloride mentioned above appears in pretty (and pretty expensive) spray bottles in health shops, labelled Magnesium Oil. It's not an oil, but a saturated solution that is effective sprayed on hurty bits. But buy a big bag of magnesium chloride online and a one dollar spray bottle and make a very strong solution, in boiling water.

Pregnenolone. 6x50mg capsules once a week. This no longer requires medical prescription in Australia, and imposition in the past by sports drug administrators because pregnenolone is a precursor of DHEA and androgens. Pregnenolone is the precursor of all other steroidal hormones, that is, the hormones made from cholesterol. The healthy brain is 30-40% cholesterol, and a lot of pregnenolone is produced in the brain. OR that is so for young people, production designs with age. My 300mg weekly cycles for a week and supports at the centre of mitochondrial processes.

Most information on pregnenolone is derived from the work of Ray Peat. Unfortunately the search engine at his website (he's even older than I am) isn't working, but wander through his articles or presentations at youtube. 

My impression is that for me the magnesium threonate and pregnenolone make my brain work. After a history including vast periods of brain fog and cognitive difficulty because of pain. These substances, which you have to find online, do no harm.

1000

DHEA 6x. I have recently begun, for the first time, to take some DHEA. Pills and capsules available are at smallest 50mg. Ray's advice is that above 5mg you are likely to produce, via testosterone, an excess of estrogen. So I am taking a homeopathic tablet, to dissolve under the tongue, away from food and drink, at 10am. Homeopathic doses involve extreme dilution of a substance to prompt a system reaction. In the 1990s research reported in the New Scientist (good luck trying to find it now) established that the dilution called for by Hahnemann in 1796 is exactly the moment in which the last molecule of whatever disappears from the solution. Queen and Consort Windsor use it, it must be ok. Anyway, at half the cost of a packet of cigarettes, my index of medical expenditures, it's a harmless experiment.

1300

Solprin, 300mg. Solprin is a soluble aspirin tablet obtainable in Australia, 96 tablets for about AUD3. Struck off in the US, no money in it. In Mexico, Canada and the EU there is dispersible aspirin. I dissolve the tablet in a large glass of water and sip it as a refreshing drink during the afternoon. Before yoou say "but, but..." read this. And search that page for the word 'protective'. I had until recently  had large pain issues, growing worse for which I took ibuprofen then indometacin. Which did something for the pain, some bad for the stomach and sludgy effects too. And in the end the problem seems to have been an invisible decay of a tooth entwining with nerve, not hemicrania.

In the evening

In the evening, more magnesium threonate and 3000iu of vitamin D. Mindful of the cycle of anabolic and catabolic during the day. In catabolism we rip minerals from muscle and bone for work. In the anabolic phase, best overnight, we rest and put those resources back. The crisis of modern life and the perils of modern longevity involve failure in this balance, perhaps the greatest problem being the generation of calcium dust storms interfering with the mitochondrial processes, see the chart at top of blog. The mitochondria thought they'd solved the calcium problem 700 million years ago but... vitamin D and magnesium are critical for parking the calcium.

Variously.

Oxycodone and Clonazepam.  I use these for breakthrough pain. Rarely and with doses widely separated and using the two to avoid using the one repeatedly. Of oxycodone 5mg tablets. Of clonazepam the smallest available, 0.5mg. scored for easy breaking into four. I use half.

Hyoscine. I have a diagnosis of Menieré's Disease. Predominantly this is treated as a peripheral problem, of excess pressure in the cochlear, the wet part of our hearing apparatus. But treatments for it on that basis were not very effective. Then I found this research and clinical team in Germany and Argentina. They observe that:

The reason why the exclusive treatment of the peripheral organ and / or of the vestibular and auditory dysfunction does not lead to the whole and absolute compensation of the affection in many patients, is due to the fact that the prefrontal cerebral dysfunctions which always maintain latent this pathology are not being treated.

Their brain imaging shows evidence of associated problems in Brodman Area 25 in the front of the brain and the parahippocampal gyrus and limbic system further back These are regions involved with mood disorders. So people with Menieré's don't just feel depressed by it all, they also have a direct neurological process going on. Hard to explain such to doctors with little time, who are bound to stick to doctrine imposed by their college. So, armed with information from that team that they used drugs that would lower acetylcholine, I looked and found that I could buy hyoscine over the counter, as a drug for bowel cramps, which works against acetylcholine. So I began using 10mg or 20mg of hyoscine to deal with headaches and dizziness from Menieré's. And it works. There's more to write about this later.

Gelatin. I have for a long time used a little gelatin in cooking, instead of flour etc, for thickening and glaze. But recently began buying in bulk online and now make a jelly [US jello] thus:

• two dessertspoons [US tablespoons] of gelatin
• dissolve in 250ml of boiling water (it may not want to dissolve but will at the next step).
• add 250ml of cranberry juice and stir.
• Refrigerate.

Commercial jellies are mostly sugar. This tasty hyperdose of gelatin (I am eating two bowls as above over two or three days) is the best kind of high protein diet. It differs from the high protein diets you find in magazines and online in that it is derived from whole animals, not muscle meat and proprietary protein formulations as mostly recommended. Here's basic reading. In several weeks I have experienced general health improvement and beginning movement down of my excess weight. The cranberry makes the gelatin palatable but is also good for irritable bladder.

I should perhaps have begun this blog entry with this recommendation of gelatin. And perhaps written no more...

After I began to get results I did some more web searching on gelatin and came upon the writing of Dr Judy Tsafrir, holistic psychiatist in Massachusetts. Reading that blog entry and comments thread led me to resurrect my 1998 papers here.

candid reminiscences November 2019

I thought I was going to write about 2019, but this came out...

I did well under the regime embarked upon in 1998 as set out in earler notes in this blog, resurrected from back then, with some rough patches, for a number of years. I carried the burden of too much time largely bedridden in the 1990s and damage to my spine from an accident in 1986 which has made pain management difficult in these later years, though not earlier. My regime fell away in part because I was unable to convince new doctors in new location of what I was wanting to do, improving mitochondrial performance. Some of the elements thought too complicated to understand, or indeed I had to explain to one or two what mitochondria did. This was hard to suffer for some medical authority figures. It became difficult to get T3 and pregnenolone.

The pain caught up and enveloped, with chronic daily headaches, some mini-stroke symptoms and evidence on MRI, poor proprioception, dizziness, increased fibromyalgia and myofascial pain symptoms. Sleep difficulties, long treated with drugs, including Stilnox, but later identified as sleep apnea. Reflux, irritable bowel and bladder, Menieré's Disease, mild osteopenia and osteoarthritis. These are all things, boxes of disorder, named diseases, for which the doctor rule book offers this and that. "No, you aren't having panic attacks, you are one of a small number of people we have seen who have sensitive brains. We can't help you. It's all very well that your career has been based on seeing issues before others do, but your system is now reacting to everything."

Thirty years ago when CFS and FMS were unheard of I was given Ativan and Rohypnol and then another benzodiazepine of notoriety, Xanax, to wean off the Ativan. This is a recipe for absence from the planet with a sense of being sozzled by the finest red wine. Outside responsibility, beyond coherence. Necessary to abandon or go further into delirium.

Then I was given a circus of antidepressants that caused stomach bleed and extreme headache and did little else other than, in the case of Prozac, making me feel like a very old car on rocket fuel. No diagnosable depressive illness, though my unexplained, unnamed, unresolved sick state was naturally depressing.

I had been told by a government medical officer that I must see a psychiatrist. The first, a refined orientalist, told me after several meetings that he could not see me any more as each time he developed more of my symptoms. The second invited us to his Japanese style house in the woods for lunch and took me aside to give me a bag of green leaf with the comment that it might be "more useful than that stuff I'm giving you in the office." It was a B-grade experience akin the his Rohypnol and Ativan. He got the green leaf, I believe, by trading scripts for Rohys. The third had two diagnoses only, medication-responsive depression and medication-resistant depression. He had written a paper on medication-resistant depression which had been described as brilliant. I was to drop the tricyclic I was taking and start next Monday on a monoamine oxidase inhibitor (MAOI). I did. The family went to work and school, I took my tablet, by midday rolling on the floor in screaming pain. I did that for three days. My wife reported to the shrink for my incoherent self and he said he would admit me to his hospital ward. But that weekend he left for Disneyland. We never met again. I went cold turkey.

I have since then been offered the antidepressants commonly (tricyclics, SSRIs and the newer SNRI Cymbalta) prescribed for fibromyalgia. The smallest doses of any of these cause crippling headache; I've retried in hope but repeatedly failed. Gabapentin came out of patent and became available, it did something for headache and fibromyalgia though now the literature said it did not. As soon as it was out of patent, the manufacturer released Lyrica, which has gone on to be a global best seller, remains in patent, and has many addicted to it. It seemed to be generating more symptoms akin to those it was meant to fix, and was addictive. This week, entering a medical building to visit my dentist, I shared a lift with a medical specialist of the variety who come to this regional town from Sydney with shopping basket of patient files. "You're dressed for winter" he noted on this warm early summer morning. "Pain management" I said. "Much better than Lyrica." "Indeed yes" he said as I slipped away out the door. Gabapentin and Lyrica seem to be molecules sufficiently different from the neurotransmitter GABA to be patentable and rich-making, but seeking to emulate much of what GABA does. GABA perhaps the definition of 'laid back', the opposite of excitatory serotonin, the wunderkind of depression treatment for decades now. Gabapentin and Lyrica limited in value, and with significant side effects. It is in the nature of modern medicine that these drugs may be prescribed because they are 'evidence based'. By virtue of a complex process of clinical trials and regulatory approvals. But no one is going to make such investment in how to dose with GABA: no patent, no profit at all...  But of course a tiny tiny virtue. Because there is a drug approved for fibromyalgia, Lyrica the first such, we can say that fibromyalgia exists!

---

There is much more that could be told. I am fortunate in having a head with experience in research. I am fortunate in having the internet for research. I am fortunate in having a public service pension that has kept my family out of the gutter at times, albeit by enduring the sneering and scoffing performances of some forensic examiners of my condition. And then there was the glamorous GP who had on her wall her BMW advanced driving certificate and her membership of the New York Academy of Science (I had received the latter certificate too, as prize for magazine subscription) who sneered at me saying "There's nothing wrong with you, you just don't like your job." I was at the time head of a team of 50 experts advising the Australian parliament on all things. From which I had crashed very visibly, as early from my post as ambassador to China. To lose wondrous posts for imagination and drive, to fall from 40,000 feet in quiet grief. And have such said. The Emerge international scientific symposium on ME/CFS in March 2019 was broadcast online. I was not well enough to attend. A paper to confirm that there are problems of mitochondrial performance, as I had argued for two decades and as in papers earlier in this blog. And another scientist who said "Doctors know that they should do no harm. They also should know that they should not humiliate." We are not yet at such a point. Doctors still tend to believe that only what they know can be right.

My youngest child, now 36, once gave me the crippling advice "dad, dad, just be the better person". How difficult that advice is when you really want to yell a bit.