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Karaoke Therapy
(August 9, 2009)I reasoned that karaoke therapy might help my fluent or "mild" aphasia, and a year after I had big improvements in my speech, the science was published explaining why it worked, and why joining a choir may help me and other people who've suffered "mild" aphasia even more.
download MP3
Graham Nicholson explains Ciguatera
(June 8, 2009)Zombie Fish poison! Associate Professor Graham Nicholson from the department of molecular and medical biosciences in the faculty of science at the University of Technology, Sydney spoke with Ian Woolf about the tropical fish disease Ciguatera and the fish you eat to consume the poison.
Download MP3 
Australian fish at risk of Ciguatera poisoning
(May 9, 2006)I'm often asked for a list of fish people shouldn't eat if they want to avoid the risk of Ciguatera Fish Poisoning. Here's the official list from 1999 (before Sydney fishing was banned) for Australia, none of which I have ever knowingly eaten.
From the 1999 Federal Government report by Leigh Lehane:
http://www.affa.gov.au/corporate_docs/publications/pdf/animalplanthealth/chief_vet/ciguatera.pdf
"The main fish species in Australia that have caused outbreaks of CFP are: narrowbarred
Spanish mackerel (Scomberomorus commersoni) and other mackerel species,
coral trout (Plectropomus spp.), flowery cod (Epinephelus fuscoguttatus), barracuda
(Sphyraena jello), red emperor (Lutjanus sebae), queenfish (Scomberoides
commersonianus), grouper (Epinephelus lanciolatus), red bass (Lutjanus bohar),
trevally (Caranx spp.), Maori wrasse (Chelinus trilobatus), kingfish (Seriola spp.),
parrotfish (Scarus spp.), chinaman fish (Symphorus nematophorus) and paddletail
(Lutjanus gibbus) (Mitchell 1976; Gillespie et al 1986; Fenner et al 1997)."
Karaoke Therapy
(December 17, 2005)I accidentally ingested neurotoxins from tropical fish in December 2002, on a locally delivered pizza. Amongst the bizarre Ciguatera symptoms was "Mild Aphasia", including changes to my voice. I sounded terrible. I wasn't able to convey emotions in the tonality of my voice, and I often slurred my words or went quiet. The professional speech therapists took two looks down my throat and told me they couldn't see me using my voice wrongly. So I've had to do the Mad Scientist thing and experiment on myself, after reading up on neurology and immunology and toxicology. I figured that if singing activated a different part of the brain for people who stutter and helps them speak clearly, it may also help with my voice changes. A different neural pathway sounded like exactly what I need. Singing is all about conveying emotions in the changing tonality of your voice. So I downloaded EvilLyrics and winamp, and sing along at home. I have a bad memory for lyrics, but with EvilLyrics downloading them and displaying them in front of me for every song; I could sing. Nobody had to hear me. Mysteriously, my voice was remarkably richer the next day. Thus Karaoke therapy was born. I suspect the fact that I'm trying to match the singer's timing, pronunciation and inflection are part of what makes a difference. In primary school, I used to be part of a school choir. We sang at the Sydney Opera House. I think singing with another voice, gives feedback for me to make corrections to my singing. It seems to give me the best results if I sing for up to an hour, as part of my preparing for sleep rituals. Too little time has less effect. If I miss it for too many days, then my voice reverts to poor, high montonal, and faint. I'm experimenting further to see if I can refine it and get better results. Certainly listening to my mp3 radio pieces, the changes are clear. I have no medical qualifications, I'm just giving myself technical support for a black box problem that the experts have given up on. This seems to work for me, I hope if you have suffered the same symptoms, that it works for you. If nothing else, Karaoke is fun!
Ciguatera and bread sound bite
(August 17, 2004)In April, Ian Woolf reported how the fish we eat in Australia can be contaminated with Ciguatera poison, one of the poisons used in Haiti along with puffer fish and toad poison to make real Zombies. In a Discovery follow-up, Ian asks what is being done to protect us from Ciguatera. left click to play the six minute stream, or right click and select �save as� to save the 800 kilobyte file to your hard disk to play later
Ciguatera follow-up
(August 17, 2004)In April 2004, Ian Woolf reported how the fish we eat in Australia can be contaminated with Ciguatera poison, one of the poisons used in Haiti along with puffer fish and toad poison to make real Zombies. In a Discovery follow-up, Ian asks what is being done to protect us from Ciguatera.
MP3
Mild Aphasia
(July 11, 2004)My brain's speech processing centres were attacked by the ciguatera poisoned fish I ate on December 1st 2002, and it took me six months to be able to get together the concentration to write a radio script explaining my condition, and to read it on air at 2SER FM. You can listen to it here , if it doesn't start playing, then right-click your mouse and choose "save target as" to save the file to play in the media player of your choice.
Ciguatera and high altitude
(June 14, 2004)Ciguatera has the same effect on the lungs as high altitude! In the 29th May 2004 issue of New Scientist, there is a story called "Why your lungs might not cope with high altitudes", which describes High Altitude Pulmonary Oedema (HAPE), where the lungs fill with fluid at high altitudes in susceptible people. Researchers at the Centre Hospitalier Universitaire Vaudois in Lausanne have shown that the illness is connected with the efficiency of the sodium pumps in the cells lining lung alveoli air sacs. These rid the lungs of excess fluid by pumping sodium ions out, which draws water outside the lungs by osmosis. The Swiss team showed that the asthma drug salmeterol boosts the sodium pumps activity and halves the risk of HAPE. Ciguatera blocks sodium channels receptors and forces open calcium channels. This looks like the mechanism of pulmonary problems with Ciguatera poisoning and the failure of asthma drugs to help with breathing are tied to the way they act on the ion channel pumps. Chronic Fatigue Group - University of Glasgow Neurology of Ciguatera - Professor Pearn, University of Queensland So my lungs are filling with fluid when I have trouble breathing, but the asthma drugs can't get the sodium pumps to clear them, because the sodium ion receptor is blocked by the ciguatera toxin. Against my gastroenterologists' wishes, my GP has me back on antibiotics to fight the chest infection and fevers, after a month of non-treatment. The fact that I feel able to make a blog entry after two months of having trouble even reading the screen for more than ten minutes shows what a good move that was! The reading has slowed way down while I deal with the fevers. However I'm still working my way through Tuning The Brain , and my pile of New Scientist as they arrive each week.
Ciguatera from bread!
(April 26, 2004)I wanted to find out about the risk of Ciguatera poisoning from skipjack tuna oil used to supplement Omega-3 DHA bread and other flour products, so I contacted George Weston Foods. George Weston Foods are one of Australia's largest food manufacturers, responsible for popular brands in bread and baked goods, dairy, meat, cereals and animal feed. They are wholly owned by Associated British Foods, who operate in New Zealand, the United States, the United Kingdom, South Africa and Thailand. I was assured "Fish effected by Ciguatera Poisoning are usually fish that feed in warm ocean waters such as a reef. The tuna used in our product is caught using large fishing trawlers in the deep ocean and therefore poses a minimal risk of carrying the toxin." However, their tuna suppliers test for Ciguatera every three months. I figure this is to account for the fact that fish swim. Predatory fish swim over large distances. Testing once every three months obviously isn't safe enough, or I wouldn't have been poisoned. Ciguatera is very under-reported, in fact it took 18 months for me to be diagnosed. Many other people may be affected and not know what hit them. What are the regulations for testing? I'm waiting on a reply from Food Standards Australia to find out whether there are any regulations for Ciguatera toxin testing in place.
Ciguatera Zombie Poison
(April 13, 2004)In Haiti, Voudon sorcerers mix up Zombie making powder that works largely because of two nerve poisons found in the puffer fish used in the recipie. Ciguatoxin, which blocks the calcium electrochemical channels in nerve cells, and tetradotoxin which blocks the sodium channels.
Ciguatoxin is a water and fat soluble protein that isn't restricted to puffer fish, its also made by dinoflagellate protozoa - micro-organisms that attach themselves to algae that grow on dead, damaged or dying pacfic coral reefs. Small fish eat the toxin-salted algae, and are eaten by larger and larger predator fish. The poison is concentrated in each step up the food chain. By the time you get to big fish like the skipjack tuna used in fish oil supplements, or barramundi, coral trout, sea perch, mullet, cod, red snapper, and mackeral, (to name a few) that you may choose for your dinner table; there's enough poison not to make you a zombie, but to make you suddenly and dramatically ill.
I should know, it happened to me just over a year ago.
I ate some omega3-enhanced food supplemented with fish oil or some contaminated fish, I don't remember. Cooking and freezing have no effect on the poison, and kits to detect the poison in fish have only become available in the last two years. The first symptoms last only a few days , with damage to the nervous system lasting from months to decades. A study released by Professor Hoegh-Guldberg at the Queensland University's Centre for Marine Studies reports that the frequency and severity of outbreaks of ciguatera fish poisoning in Australia are increasing as the coral reefs are dying.
Traditionally zombie slaves can be spotted by their strange lurching walk, their glazed eyes, and their odd voices. The changed voice is attributed to the voodoo god Baron Samedi, Lord of the burial grounds. These are all among the symptoms of ciguatera fish poisoning, and are caused by subtle brain malfunctioning. The changed voice is from damage to the speech centres such as happens in aphasia and aphragia, the glazed eyes are from being zonked out and mentally exhausted, and the lurching walk comes from dizziness, muscle weakness and nervous system overload.
Your body recognizes the poison and tries to eliminate it, but because its fat and water soluble, it just gets absorbed again, and again.
Ciguatoxin causes nervous impulses to trigger more quickly, but it slows the transfer of information, and then slows the cells readiness to be triggered again. You can also be exposed to the toxin and have a small reaction the first time, which sensitises you. If you eat poisoned fish again, your next time may be a much more severe reaction.
The key diagnostic flag for this poison is body temperature problems. Hot things seem hotter, cold things seem colder, and sometimes they get reversed. This can be a very strange sensation in the shower!
The CSIRO invented a technique by which tuna oil can be made into a tasteless and odourless powder that can be added to foods such as bread, baby formula, and breakfast cereal to give consumers the healthy omega-three fatty acids that they want in their food. Omega-3 oils in food have been shown to be good for the brain and the heart, and the products have become very successful in the marketplace. I'm still waiting for an answer to my query about whether there is any testing in place to reduce the risk of ciguatera contaminated oil reaching the supermarket. Even chicken fed with fishmeal has been reported to have caused ciguatera poisoning.
In the USA there is a hundred-dollar-US monoclonal-antibody blood test available, and fish testing kits are available in Australia for around $2 per fish. In the Carribean Islands, the locals test their fish by leaving a small chunk near an anthill. If the ants eat the fish, so do the people. Dr. Hokama who invented the blood test, believes that ciguatoxin is the agent that causes Chronic Fatigue Syndrome, and in clinical trials, ninety-six percent of suffers had ciguatoxins in their bloodstream. Dr Hokama suspects that his American patients haven't all had trips to the Pacific, instead they may have their own mico-organisms zombiefying them - from the inside.
I lost seventeen kilograms, my voice changed from baritone to tenor, and often fades completely. My eyes saccade when I focus on near objects, I have clumsy attacks, and I get dizzy, weak and exhausted if I'm upright for more than a few minutes. I sometimes have to use a walking stick or lean on furniture. My hands shake, and without medication, I have small seizures that shake the bed while I sleep. I have a kind of hiccup-belch that starts being occasional in the afternoon, but becomes more frequent as it gets later at night, sometimes keeping me awake. I suffer from episodes of mild aphasia where I have trouble speaking clearly, and trouble understanding spoken or written words. I have trouble doing simple arithmetic, and get a bad headache if I force myself to work on calculations or speech or reading. Medication can help with a few symptoms.
It isn't certain whether I've been affected by a one-off poisoning in November 2002, or whether I'm infected with some organism that produces the same toxin continuously. Its possible that eating bad fish just triggered a prior sensitivity. This may be the mechanism of CFS laid bare because it became severe after fish poisoning, or it may be a poisoning that made my existing CFS harder to deal with. So I'm now on a regime of seven drugs to counteract some of the symptoms.| Neurological symptoms
Paraesthesias in extremities and around mouth including numbness, tingling, burning, and pain. Temperature reversal where hot feels cold and vice versa. Temperature sensitivity Vertigo Dental pain Blurred vision Tremor Psychiatric Pain on urination |
Gastrointestinal symptoms Nausea Vomiting Diarrhea Abdominal pain Dyspepsia Abdominal cramping |
Cardiovascular symptoms Bradycardia Tachycardia Hypotension Arrhythmia Sudden blood pressure spikes |
| Other symptoms
Dermatitis, itch, rash, aches and pains, arthralgia, myalgia, general weakness, salivation, breathing problems, dyspnea, neck stiffness, headache, ataxia, exhaustion, fatigue, sweating, depression, and metallic taste in the mouth. |
||
Resources:
Ciguatoxins and Ciguatera
FDA Foodborne Pathogenic Microorganisms and Natural Toxins Handbook
CSIRO; Fishes n' Loaves
Neurotoxin Discovered in Chronic Fatigue Syndrome
Holistic Health Topics - Ciguatera Fish Poisoning
CIGUATERA: Fish Poisoning - MIAMI MEDICINE / AUGUST 1992
Ciguatera Fish Poisoning , NIEHS Marine and Freshwater Biomedical Sciences Center
emedicine Ciguatera Toxicity
SEA SICKNESS July 11, 1999 The New York Times Magazine p. 18 by ANDY NEWMAN
FISH SICKNESS
Barrier Reef just 50 years from death
Successful Treatment of Ciguatera Fish Poisoning With Intravenous Mannitol
The Ciguatera Epitope: So What Do We Really Know Thus Far?
Ciguatera - Chronic Debility: One cause of the CFS
REAL ZOMBIES by Ian Woolf
Witch doctoring
Ciguatera management
neurotoxins: Diagnosis and Treatment Information for Chronic Fatigue Syndrome, Fibromyalgia and other Mystery Illnesses
Ciguatera Fish Poisoning - a review in a risk-assessment framework
Neurology of ciguatera
Fish Poison Problems
The Science Show - Ciguatera
Ciguatera blood testing
Tip-Top Bread UP Omega 3 DHA
Ciguatera fish tests
Thanks for all the fish
Nobody returns from Narrabri
(April 2, 2004)I graduated from my Applied Physics degree with Computing Science sub-major, and applied for a job as a scientific programmer with the Ionospheric Prediction Service in Chatswood.
I knew about the 11 year sunspot cyle, so they hired me as a solar astronomer instead, as a replacement for the incumbent astronomer who was tired of the simple life in the outback. I gave up on my patent office job interview, and accepted the post. I had two weeks to move there from Sydney.
They observe the sun from the Culgoora Observatory outside of Narrabri, and make predictions about what the sunspots will do, and how they will effect the ionosphere and its ability to reflect radio waves back to Earth, and hard radiation that will be experienced by satellites and astronauts during solar storms.
 < | In
exile at the Culgoora Solar Observatory in driest Outback Australia during my short sojourn as an astronomer. Narrabri - you'll never leave |
Narrabri is an interesting town to move to for a city boy. One main street, with seven pubs and two drive through bottle shops, and one RSL club. Two video hire libraries, no theatres or other eentertainment. No public transport, just a plane trip to Sydney or Tamworth. I couldn't afford a car.
I worked in Narrabri for nine months in 1992. I was diagnosed with Myalgic Encephalomyelitis (ME/CFS) by Professor Denis Wakefield there, and then months later, my back was permanently injured while following instructions from the supervisor at the IPS Culgoora Solar Observatory. Heavy lifting isn't usually in the job description of an astronomer.
I made this observation of a solar storm on the new Spectrograph in 1992:
Lymphocytic choriomeningitis virus (LCMV), Ross River Fever virus, and Q-fever virus are all common diseases in Narrabri in far north-western New South Wales, Australia. They can all cause ME. They also spray the cotton fields with pesticides that attack the cholinergic systems that underpin the gastrointestinal and neurological chemistry in the human body.
The fact that I was diagnosed with ME and suffered a life-changing injury within months, while working at the same dangerous remote locale may be more than coincidence.
I also attended a seafood feast shortly after my back was injured, and its possible that the "CFS flare-up" I suffered afterwards was actually Ciguatera poisoning, given my reactions to the fish neurotoxin in later years.
I'm now doomed to deal with the bureacrats at Comcare whenever I need ongoing physiotherapy or ergonomic furniture to support my back injury. No suggestion of resonsibility for the ME, as it was a controversial diagnosis in 1992, even if its accepted now. I have enough trouble justifying the purchase of a lumbar back cushion for a lumbar back injury, and no hope of ergonomic furniture.
My mistake was to be disabled by an injury while the IPS observatory was in the hands of The Department of Administrative Services (run by Jim Hacker in Yes Minister). The DAS had incestuous relations with Comcare, so took it as their duty to stop any and all payments being approved. I was never able to work as an astronomer again. My career as a physicist ended barely a year after I graduated.
Cocktail that made CFS improve
(March 4, 2004)My severe Chronic Fatigue Syndrome (CFS) symptoms improved dramatically this year and neither I, nor my doctor know why. Now they're getting worse, and again I have hypotheses, but I don't really know. So, as a scientist who may be soon gaining or losing quite a few abilities, I thought I should summarize what I took over the time my Chronic Fatigue Syndrome symptoms, particularly my energy, concentration, memory, arithmetic, and speech improved. (turns out I had Ciguatera poisoning) I'm not doing as well as I was. I don't know if thats because I tried a holiday from Symbicort to see if Seritide or Ventolin alone would help me, or because I finished the antibiotic course, or if it would have happened anyway. It all started with two puffs of Ventolin, which caused an immediate and dramatic cognitive improvement that night., particularly in my mild aphasia and confusion. This was followed by a one week course of 400 mg antibiotic telethromycin, and one puff twice a day of Symbicort 200. Bigger improvements in concentration and talkativeness Another week of just Symbicort 200 one puff twice per day. Brain fog clearing away, and I also felt a sense of well-being, as if some vague long-term pain had stopped. Symbicort 200 increased to two puffs, twice per day - double the dose. Prescribed 500mg levofloxacin antibiotic for one week course. I feel energised and happy. My technical skills come back, and I am able to go for long walks with a delayed payment of exhasution and pain instead of an immediate one. My "Faustian bargain" of enjoy now and pay later, is available again. My minor acne clears up including some I'd forgotten about. A week later, I fiinish the levofloxacin. I develop a painful yeast infection in my throat and mouth, and lose my voice. My doctor takes me off Symbicort, and asks me to try using just Ventolin alone, two puffs, twice per day. The infection goes away and my voice comes back better than its been for a year. I have some energy, but I start to lose all the other benefits. I spend a day doing radio interviews, editing them and packaging them for our community radio science show Discovery. I get the inevitable "crash" of exhaustion and pain from the activity. I can't stand the total regression to mild aphasia and pain and weakness, so I take Symbicort again. I feel better but develop the yeast infection and lose my voice again. My GP tells me to take yoghurt to fight the yeast. He takes me off the Symbicort again to try Seritide, which has Fluticasone and salmeterol, which are supposed to help asthma in the same way as the combination of budesonide and formoterol in Symbicort. I struggle through two weeks, and try adding ventolin to the mix, but Seritide does not help my cognitive symptoms the way Symbicort does. I've been back on Symbicort for 4 days with a spacer and lots of drinking yoghurt. The yoghurt seems to help supress the yeast infection. The spacer I use with Symbicort was trapping lots of big particles of powder, which are apparently the footholds of the yeast infection. I exhausted the old inhaler and started a new one today, and the new one leaves no visible residue at all in the spacer. Perhaps I was victim of a bad clumpy batch of Symbicort powder that left me more open to yeast infection. I thought if only I could take Symbicorts drug combination that help in a non-powder form, I would get my voice back. I searched google and found a "1998 patent":http://www.pharmcast.com/Patents/122199OG/6004537_aerosol122199.htm for an "Aerosol Symbicort equivalent", this sounded exactly what I needed. Unfortunately, when I contacted AstraZeneca, they informed me that "this presentation is not yet available in Australia and it is hard to say when exactly it will be available." Google had nothing else for me, so I emailed one of the inventors, Professor Frank Blondino, and I'm still waiting on a reply. Surely in six years the patent has gone to manufacture? AstraZeneca's Medical Affairs Associate emailed to tell me that she had "conducted a search of the medical literature as well as the AstraZeneca in-house database, but was unable to locate any reports of Symbicort being used for the treatment of Chronic Fatigue Syndrome." Of course, for all I know, I need to be back on the antobiotics as well, Symbicort on its own may not be enough. The acne came back this week. Something unknown knocked me down and gave me strange neurological symptoms and constant gastroentrological bubbling. Some unknown effect of the medical cocktails I've been subjected to in the last two months has helped the neurological symptoms slowly improve after a dramatic improvement in clarity from the first Ventolin dose. Unfortunately, with me as both scientist and my own guinea pig, its Mad Science, and I haven't managed to isolate what works and get rid of all the side effects.
Tuning The Brain by Jay Goldstein released
(March 4, 2004)Dr Jay Goldstein of the Chronic Fatigue Sydrome Institute has finally released his new book on how to treat the illness.
The online extract has a very bleak, but accurate view of CFS treatment available in Australia:
"My patients from Australia described the medical environment for
CFS as a vast wasteland, although some progress was being made in
educating individual physicians."
"The situation in Australia is tragic. Many patients with CFS are derided
by their physicians, unlike in the United States, where they are treated by at
least a few establishment physicians with benign condescension. Because in
Australia few treatments are known, few are offered. Offices that provide vitamins,
colonics, and other holistic therapies are swamped as a result."
His description of his model of Chronic Fatigue Syndrome treatment is tantalizingly fascinating, because it seems to be an accurate description of my experience of "immediate neural reintegration" with Ventolin and Symbicort in January 2004.
"In CFS and related disorders the brain does not handle information properly. As a result, a
patient experiences sensations and cognitions that are not appropriate to his
or her stimulus environment. If the input is incorrect, so is the output (garbage
in, garbage out), and physiology regulated above the level of the
brainstem may be dysfunctional.
The corollary to this theorem, which is not as self-evident, is that the brain can be tuned to enhance the signal (salient information) and eliminate the noise (irrelevant stimuli), much like tuning a radio to hear the music and not the static. This process can often occur immediately
some researchers use the word instantaneously, but I have been advised not to (yet)with the proper intervention. A few papers in scientific journals are beginning to address this common phenomenon, such as
Marder E (1997), Computational dynamics in rhythmic neural circuits.
The Neuroscientist 3(5):295-302.
Nicolelis MAL (1997), Dynamic and distributed somatosensory representations
as the substrate for cortical and subcortical plasticity.
Seminars in Neuroscience 9:24-33.
Glanz J (1997), Mastering the nonlinear brain. Science 277:1758-
1760."
I'm very keen to review a copy, ASAP. My experiences with Ventolin and Symbicort lead me to believe that he's the researcher thats on to the solutions I need. The web page for the Institute is dead, so they're a little hard to contact. I've heard Dr Goldstein is no longer in clinical practice so I can't go and get help from him directly. The one Canadian doctor we were able to find will not take new patients, but is happy to advise other doctors.
I just need to find a specialist that will help me follow the treatment protocols. Time to rejoin the CFS support comminity.
Asthma medication side effects help Chronic Fatigue Syndrome
(February 18, 2004)I was given Ventolin (generic name "salbutamol" or "albuterol") on the 4th January 2004 as first aid for a severe bronchitis attack on a trip to winter Canada, and had wonderful side-effects helping my Chronic Fatigue Syndrome. The better drug, I found, is Symbicort. After one puff of Ventolin, I immediately heard a loud dizzying, ringing noise, and then my mind cleared. This is wholly remarkable to someone who has suffered clouding of the brain by severe CFS or Fibromyalgia. To someone like me, who has suffered frequent attacks of mild aphasia and complete confusion for more than a year, this is like going from reading by the light of a randomly flickering LED clock, to switching on the room lights. Chronic Fatigue Syndrome researcher "Dr Jay Goldstein":http://www.drjgoldstein.com/ in his book �Betrayal By The Brain� talks about there being brain systems going wrong that are helped by vaso-constricting drugs, and other brain system problems that are helped by vaso-dilators. A bronchio-dilator like ventolin dilates the bronchial tubes by vasodilator action. I was prescribed the preventative Symbicort, which is a powder inhaler containing anti-inflammatory budesonide and brochiodilator formoterol. The brain effects were more gentle than the Ventolin, but more substantial and longer lasting. I have massively improved concentration, and my aphasic symptoms are so well controlled that I am able to sit and write for hours or sit and talk for hours. I feel more energetic, and I have a sense of well-being that I suspect comes from the reduction in inflammation. After two weeks of Symbicort and antibiotics, my bronchitis mostly cleared up. I still had a dry cough, so I visited a doctor, and explained about how much I like the side effects of the Symbicort. He doubled my dose, and wrote a report for my doctor at home. On the double dose, I had energy and stamina. For the first time in eighteen months, I had been able to go out on walks for pleasure, without debilitating exhaustion. My technical skills came back to me, and I was able to work on a project with my father-in-law to set up his computer to transfer his old video cassette collection to DVD to save space. I worked without tiring for several days before I finally had the familiar CFS "crash" exhaustion and had to simply rest for a few days. We returned to Sydney via London, and my wife and I walked for six hours a day all over London to see the sights for two days. My legs hurt from simple muscle-tiredness after a good work-out, rather than from inflammation. Since returning to Sydney, I developed the common side effect of oral thrush from the Symbicort, and my doctor switched me to Ventolin. The Ventolin gave me my voice back and let my body get rid of the thrush. I did have some stamina on the Ventolin alone, and I could still talk, but it simply wasn't as good as the Symbicort. I started to feel miserable, like you do with flu or CFS, and I wasn't feeling as bright as on the Symbicort. When I started getting the "Mild Aphasia":http://feeds.feedburner.com/hereswhy symptoms like biting my mouth when I ate, I decided I had to return to the Symbicort. I compromised by halving my dose to one puff twice a day to reduce the risk of hurting my throat, and used an inhaler spacer. I felt better within twenty minutes. I stopped having to lie down to recover from my one big day out gathering interviews for the "Discovery radio show":http://feeds.feedburner.com/discoveryradio . I started writing my travel insurance claim, chasing up the money that Centrelink owe me, cleaning the flat, and registering with the "NSW Writer's Centre":http://www.writerscentre.org.au . I was diagnosed with Chronic Fatigue Syndrome (CFS) in 1992, and have suffered various insults that have worsened things since then. I have suffered severe symptoms since November 2002, suffering "Mild Aphasia":http://feeds.feedburner.com/hereswhy and losing seventeen kilograms. I think the oral thrush that hurts my throat is only caused by the dry powder inhaler, and my google searching has shown that there exist aerosol inhalers that have the same active ingredients budesonide and formoterol, including sinus sprays. I intend to contact "AstraZeneca":http://www.astrazeneca.com who make Symbicort and see if they have any information about the drug as a treatment for CFS. My gastroenterologist early last year told me that my severe CFS symptoms and my mild Aphasia seemed to him to be caused by a micro-organism that exposed my brain to a foreign protein causing inflammation. It makes sense then, that an anti-inflammatory drug should help me. I'm not cured; I'm still disabled by CFS, but I'm feeling much, much better. I hope that I'm not an isolated case and that these drugs can be used to help relieve some of the symptoms of CFS and Fibromyalgia sufferers around the world. References: "http://www.pulsemed.org/cfspharm.htm":http://www.pulsemed.org/cfspharm.htm "CFS/ME Society of NSW":http://www.zip.com/au/~mesoc/ "A Companion Volume to Dr. Jay A. Goldstein's Betrayal by the Brain: A Guide for Patients and Their Physicians":http://www.amazon.com/exec/obidos/ASIN/0789001195/ianwoolfscent-20
Asthma medication side effects help Chronic Fatigue Syndrome
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Good mind-altering drugs, but no ventilation in winter in the Northern Hemisphere
(January 6, 2004)This is Day Nineteen of winter wonderland, and the air in every house and car is filled with little hairs and fluff that start me coughing up a lung, and the occasional stomach lining. There is no ventilation in winter in the Northern Hemisphere. With the Super-Senses afforded to me by the curse of hyperacuity of my sense of touch, I can count every dog hair and fabric fragment as it hits my lungs going in, and sometimes out. Hyperacuity is experiencing the removal of the normal filters that remove noise from the signals your brain porcesses from your raw senses. Its usually caused by psychotropic drugs, hypnotic states, or brain inflammation. I've opened the Doors Of Perception, as Huxley called this, with meditation in the past, but sadly its inflammation thats cursed me at random times in the past 12 months, and the Doors are open so wide that I can't get them shut to get some sleep. I've visited a Canadian 24-hour clinic, so I've been able to compare standards of medical care with my Australian experience. The 90 minute wait wasn't bad for a Monday lunchtime in winter. My Canadian doctor was only able to handle one symptom for the visit, and his objective was to eliminate life-threatening pneumonia as a diagnosis, as quickly as possible and get me out of there so more desperate souls could receive his aid. I'm embarressing everyone with the secondary stomach problem that was caused by literally gut-wrenching, convulsive coughing on my return to the house in Toronto. My responsibility is to hope quietly that it will heal on its own. I would have been able to get an Australian doctor to at least check out the tender points, and get a baseline on whether I've done myself an injury in an already troubled region. I have full travel insurance, so I can pay for proper medical care, but that doesn't matter. Emergency rooms at hospitals are for life-threatened people only, anyone else will be resented as betraying their civil duties, and be justly punished by unpleasant day-long waits. I'm not dying yet. This I have had explained to me, and this I understand. I've also had explained to me that the Docs in the Clinic are understaffed and over-worked, and I've seen this. I'm told that Canadian residents do have access to doctors who could actually treat you like a person instead of a symptom, but that these doctors don't see people unless there's a guaranteed commitment to a long-term relationship. Sort of like an arranged marriage. I should have stayed in Buffalo, and tried out what the US medical system would make of a guy who isn't dying, but can pay to see a doctor. I was certainly in a culture where I was welcome to express my distress, without people dismissing me as a drama queen. I made a bad decision. In my defence, I had all the signs of recovery until I hit the indoor air pollution. I felt like I was trying to breathe the atmosphere of a different planet and failing miserably. Not on Pluto anymore. Deep exhaustion and oxygen-deprivation caused brain fog, and my ability to think narrowed sharply. Between gasps and full-body spasms, I was still able to clearly express myself in short, witty sentences, to a group of people who had no idea I'd been feverishly ill for four days already. After attempts to solve my oxygen problem with air cleaning machines, postural changes, and drinks of water, I was no longer able to think of a remedy for myself, and only wished for death to hurry up, already. So I expressed blunt doubts about my survival, and someone was able to suggest stepping outside into the cold night air to escape the indoor air pollution. I wiped my running nose, coughed up the other lung, and put my jumper, snow-boots, jacket, scarf, gloves and touk (to stop my ears freezing), and ventured outsite. I was feeling very foolish I hadn't thought of this traditional Canadian respiratory infection remedy for myself. I risked being told once again how upside-down and topsy-turvey my Australian expectations are. There is a ray of light from out of this cloud of misery and snow. I've been exposed to vaso-dilators. Much later in the evening when all the people with cars who could drive me to a Clinic had gone home, secure in the knowledge that I only needed a quick trip out into the cold but clean night air to be able to sleep; I was offered a hit of ventolin for my tortured lungs to help me survive the night. It affected my brain a *very good* way. Back in High School, I remember seeing non-asthmatic kids in high school getting high from ventolin puffs. This is what happened: I heard a loud dizzying, ringing noise, and then my mind cleared. This is wholly remarkable to someone who has suffered clouding of the brain by severe CFS or Fibromyalgia. To someone like me, who has suffered frequent attacks of mild aphasia and complete confusion, this is like going from reading by the light of a randomly flickering LED clock, to switching on the room lights. Result! Two weeks ago I was reading the patient's gloss of Dr Jay Goldstein's "Betrayal By The Brain" about his clinical research into Chronic Fatigue Syndrome and Fibromyalgia. He talks about there being brain systems going wrong that are helped by vaso-constricting drugs, and other brain system problems that are helped by vaso-dilators. A bronchial-dilator like ventolin is a vasodilator. I took my prescription bronchitis inhalor tonight, and I didn't experience the ringing in the ears, or get quite so quick an effect. However, what an effect! Not only does it help control my coughing and wheezing, but I've just written a book review, and a rather sizeable blog entry. I've only been prescribed a two week supply. My memory problems seem to remain unhelped, but my concentration and articulation are improved. Memory may simply take longer treatment. I'll be reading Goldstein's book to see what else he suggests for people who respond the way I have, and planning to get some vasodilation drugs that work a little more long-term on my return to Sydney.
Good mind-altering drugs, but no ventilation in winter in the Northern Hemisphere
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When the speech centres of your brain don't work as well as they used to - Dysphasia or "mild aphasia" explained.
