Year Ten.htm

Go to year 1 . 2 . 3 . 4 . 5 . 6 . 7 . 8 . 9 .

Nature's Sunshine Products of Australia Pty. Ltd, have been supplying high quality supplements to assist me in this ongoing study. Without the assistance of Nature's Sunshine, Stephen Webster and Robyn McInnes I would not have been able to continue experimenting with supplementary medications that may assist in treating ALS/MND.

The staff at Nature's Sunshine are very knowledgeable, helpful and efficient. I am extremely grateful and appreciative of their encouragement and support and can recommend their high quality products and service.

To order supplements or for more information about product availability see Nature's Sunshine's website Telephone +61 (0)2 9894 0111 or fax +61 (0)2 9894 2422. Their Australian address is P.O. Box 6884, Baulkham Hills Business Park, Baulkham Hills, NSW 2153.

Steven Shackel, April 2005

May 1st update: 1st Month April 2006

This new study year got off to a good start. I saw a pain management specialist (the fourth in ten years) as a result of the government's so-called health system reforms. For "reforms" read "cutbacks".

The specialist arranged for me to get an MRI scan with a view to having surgery to stabilise my cervical spine and reduce some of the pain that troubled me for much of last few years. Surgical procedures have improved to the extent that the "impossible" of ten years ago is now merely "difficult". If it will stop the pain, "difficult but no longer impossible" sounds good to me.

Towards the end of last year I was titrating the doses of my prescription medications with a view to discontinuing them completely. I am pleased to say that, apart from medication for severe pain, I am no longer regularly taking medications that I took daily for most of this study. Where possible I have replaced them with supplementary medications, such as Nature's Sunshine's Joint Comfort for general inflammation. The other supplements in my basic regimen also seem to be controlling all but the worst neurological symptoms.

This discontinuation of prescription medications is part of my research that has not been possible until now so I am looking forward to recording my progress without prescription medicines. I have long believed that the negative side effects of many of the medications have unavoidably coloured my results for much of this study. This was certainly so with the antibiotics I was forced to take. With luck, they will continue to be unnecessary in the coming year.

Correction of the spinal damage that causes extreme pain, prevents sleeping, sustained exercise, etc. should ultimately improve my general health and increase the chances that my body's innate healing mechanisms to overcome any remaining symptoms of ill health.

In the meantime I shall continue to experiment and research potential cures for neurodegenerative and related illnesses on behalf of those that are unable to.

June 1st update: 2nd Month May 2006

I experienced clusters of completely fasciculation-free days this month. Each time these fasciculation-free periods were followed by a day of moderate but widespread fasciculations, almost as if my body were making up for lost time. Reviewing my records I noticed that this has also happened, less obviously, in the past.

It crossed my mind that the usual flutter of benign fasciculations I experience when I wake may "discharge" or use up whatever causes the fasciculations in the first place. If toxins or stressors accumulate during sleep or periods or rest this may explain my observations. It may also be complete nonsense but seemed worth exploring.

My general pain levels remain elevated for no obvious reason. I can control the intensity of the pain with prescribed medications but have no idea why it flares up and subsides as it does. Some of the pain is similar to the post-operative pain I experienced several months ago. Perhaps during sinus surgery my neck was positioned in ways that accidentally displaced disc or vertebrae, which is now pressing on the nerves.

My records reveal a distinct increase in neck related pain (including severe headaches, arm and shoulder pain) after the operation. Without realising it, I was recording this pattern for months but it only accidentally became obvious whilst reviewing fasciculation data.

My doctor suggested that I take prescription rather than herbal anti-inflammatory medication but this made very little difference, although it is clear that nerve-root irritation and inflammation is the cause of the most severe pain.

Despite the pain I somehow managed to be more active this month, which should go some way to removing some of the unwanted weight I gained whilst activity was limited. Pain and general health allowing, I hope to gradually increase activity and exercise in coming weeks.

July 1st update: 3rd Month, June 2006

In my search to discover effective anti inflammatory supplements I tried Xango juice, derived from the mangosteen fruit. Mangosteen is not a variety of mango but a tropical fruit long used to treat many ailments in south east asia. The primary active ingredients are xanthones, which have high antioxidant and anti inflammatory properties.

As reported previously, I have been experiencing painful inflammation, particularly in my upper and lower spine, which also causes limb pain and intense headaches. I was recording a decrease in pain levels after 11 days drinking Xango and a considerable improvement by the 13th and 14th days.

Whilst it is true that my inflammatory symptoms seem to increase and decrease for no apparent reason these symptoms rarely "shut off" from one day to the next as they did this month. It is still possible that my inflammatory pain decreased of its own accord so I shall stop drinking the Xango juice and record changes, if any. Similarly, I shall record any changes or improvement when I start using the juice again. As always, I am hoping for the best and should be able to publish the outcome next month.

August 1st: 4th Month, July 2006

This was another month of extremes. Pain and inflammation levels were unusually high at some stages and low enough at others for me to undertake physical activities that have been impossible for over a year. Unfortunately, undertaking physical activity after more than a year of enforced inactivity caused pain in muscles where I didn't know I had muscles. Fortunately this is "good pain" so I was happy to be dealing with that rather than the spontaneous pain that can even wake me from sleep for no apparent reason.

My days of improvement can possibly be explained. I am still experimenting with Xango, mangosteen juice, and I recorded a significant improvement in inflammatory symptoms whilst taking the Xango, an equally significant worsening of symptoms several days after stopping the Xango for a week and an identical improvement when I started taking it again. As this occurred during a particularly bad pain/inflammation episode I was both surprised and impressed by the results I recorded.

As chronic inflammation is considered to be a significant factor in neurological illnesses this observation may be of general interest. I cannot speak for its long term use but it seems to work extremely well for symptomatic relief.

There is extensive information and supporting scientific references on mangosteen and xanthones .

September 1st: 5th Month, August 2006

I successfully managed to start losing unwanted weight this month by modifying my dietary portions. As my basic diet was fundamentally good, free of junk foods, soda's, alcohol, etc., my only option was reduce the size and type of meal portions and actually eat meals instead of forgetting to eat then grabbing whatever was quickest and easiest to prepare - frequently a sandwich or simply "bread and spread".

By losing excess weight I am hoping to eliminate the need for prescribed blood pressure medications, which either do not work for me or make me ill, as occurred again this month. Apparently my heart is healthy, my cholesterol good but my blood pressure inexplicably high. Herbal alternatives to prescription medications have also been tried with no obvious improvement.

The weight was gained during several prolonged periods of enforced inactivity. Thankfully, I am now usually able to exercise most days. I would like to do more and, with time, should be able to increase the duration and intensity of exercise. This has not always been easy or even possible but with diminishing options I shall just "tough it out".

Learning from past mistakes I am better able to gauge when beneficial exercise is becoming excessive. This can be extremely frustrating because my natural instinct is to just keep pushing myself but this is not appropriate at the moment (and probably never was).

The next few weeks should see an improvement in my general health and quality of life, which has been below par for far too long. This is definitely something to look forward to.

October 1st: 6th Month, September 2006

This month I started "pulsed antibiotic" treatment for chronic Borrelia (Lyme) and Babesia infections, diagnosed some time ago but until now untreated. The cost and complexities of arranging treatment for chronic Lyme infection in Australia made it too difficult to treat before now. At the time of writing I am two thirds through the current treatment and not fully able to assess its efficacy. I shall include details of the treatment here at a later date if it proves helpful.

Any neurological symptoms this month have been quite stable but my general health has been poor. This is likely symptomatic of a Jarisch Herxheimer reaction (also called Herx or JH). Fever, headaches, joint and other pain have been prominent but as I half expected this I have not worried too much. I was hoping to avoid a Herx reaction but it seems that I probably didn't. I say "probably" because I have experienced all the symptoms alone or in combination before now so I don't want to jump to conclusions.

Whatever the discomfort, I am assuming it will pass in time for my next update when I may even be able to report an improvement of some sort.

November 1st: 7th Month, October 2006

The "pulsed antibiotic" treatment for chronic Borrelia (Lyme) and Babesia infections that I started last month stirred things up, if the Jarisch Herxheimer reactions (Herx or JH) are anything to go by. Although I was aware the Herx reactions were possible I was still surprised by the intensity of the symptoms. I experienced the predicted fever, joint and other pain and suffered almost relentless headaches. Previously, I mentioned that I was hoping to avoid Herx reactions but they occurred with alarming regularity.

It is clear from my records that the Herx reaction peaked precisely ten days after starting each five-day antibiotic phase. This reaction occurred four times in all. Each peak was preceded by two bad days and followed by two uncomfortable "recovery" days. If this process has flushed out the hidden, intracellular borrelia/babesia infections the unpleasant symptoms provoked this month will have been well worth it.

My steady loss of unwanted body weight plateaud this month for no apparent reason. I am assuming, and hoping, that my weight loss will recommence when I return to my normal routine. My neurological symptoms were surprisingly stable so most days I was able to walk and exercise a little, if somewhat uncomfortably.

This entire study has recorded the unusual number of chronic and often unexplained infections and illnesses I have suffered over the years. This would indicate a depressed immune system or a chronic, exacerbating infection that has been untreated and untreatable until now. If my experiment has broken the reinfection cycle and evicted the organisms responsible, this should be reflected in future updates.

December 1st: 8th Month, November 2006

There were two distinct halves to my month. The first half seemed to be a continuation of the pain and discomfort provoked in the previous two months whilst experiment with antibiotics but the second half was far more stable and comfortable.

After the symptoms finally settled down I started taking Immunocal, a bonded cysteine dietary supplement. This should improve my immune system and general health and possibly help my body deal with any spirochetes that remain after my pulsed-antibiotic treatment.

As Immunocal also contains calcium/magnesium I recorded some low level cramping in my legs and arms (as I always do when I take any form of supplementary calcium/magnesium). This happened during the first week taking Immunocal but gradually decreased.

It is difficult to articulate how debilitating a 24 hour a day headache can be, particularly if it is of migraine intensity as mine was. To be spared this was a huge relief and inspired me to more physical activity than usual, partly to catch up with work I had been forced to postpone and partly out of sheer relief.

My major activity was gardening, which meant working through yet another pain barrier as long unused joints and muscles complained. The reason I mention this at all is to illustrate my state of mind. For the first time in months my pain decreased and I immediately provoked more. But this was pain with a purpose as I slowly but surely intend to become as active as possible. The scope of my labours is somewhat limited compared to 20 years ago but I figure that if my body is going to hurt anyway I might as well have a garden to show for it!

This ability to increase my activity levels may be a positive result of my antibiotic therapy or perhaps an early indicator that the Immunocal is helping. I shall know more in two weeks when I run out of Immunocal and am able to make a direct comparison.

January 1st: 9th Month, December 2006

My 4 week experiment with Immunocal was extremely interesting. Whilst taking the Immunocal my inflammatory symptoms decreased somewhat and the extreme and consistent headaches I had been experiencing ceased for the first time in months. (Within a week of finishing the Immunocal the headaches returned but are somewhat improved).

There is little doubt, and my daily assessment figures support this, that my activity levels and general wellbeing improved for the duration of the Immunocal trial. Thanks to Steven Petrosino, PhD I shall be able to try Immunocal again and make a direct comparison in the next few weeks.

After two weeks taking Immunocal I was inexplicably incapacitated by fatigue. I could barely function and, although I was sleeping reasonably well, kept falling asleep during the day the minute I sat down. This is most unusual for me. At the time I thought this week of extreme fatigue might be a result of some form of Immunocal "detoxification". This seems unlikely now as I have had the same symptoms of fatigue this month whilst not taking Immunocal. A doctor's appointment and blood tests next week may shed some light on what is happening.

Fasciculations increased significantly this month, particularly in my legs, although these usually followed periods of unintentionally excessive exercise. Whilst I am delighted to be able to do some work in the garden, the price I pay in pain and neurological problems is fairly high at the moment. This will not stop me trying and, as always, I am looking forward to things improving in the coming year.

February 1st 2007: 10th Month, January 2007

At the beginning of this month I discovered that I have a rare allergy to the medication prescribed last year by a pain management specialist to augment my normal prescription medications. The unwanted side effect of the new medication, (normally used to decrease epileptic seizures but also to block the severe pain of sciatica, trigeminal neuralgia, etc.) is cumulative and, ironically, causes pain in rare cases. It can also cause depression, aphasia, disorientation and the other worsening symptoms I experienced towards the end of 2006. Much of this was not reported as part of this study but undoubtedly influenced every other health event recorded here. The chance that I would have this reaction was so remote that it was not considered until all other possibilities had been excluded.

My unusual and extreme reaction to some prescription medications has occurred fairly frequently over the years. Why I should react so badly is unknown and difficult to explain. All I can say at the moment is that my records reveal that I seem to have an overactive immune and inflammatory response. Perhaps this unusual sensitivity is significant and may eventually help with my neurological research. It may go some way to explaining why my neurological symptoms have remained stable for so long. Without comparative data it is virtually impossible to even hypothesise about the relevance of this information at this stage.

With my prescription medications now working for rather than against my general health and wellbeing I end this month in high spirits and good health. It is such a relief after what has occurred in the last six months and a good way to start a new year.

March 1st 2007: 11th Month, February 2007

The curse of February struck again as it has six out of the last seven years. What began as a sore throat and tight chest in the morning had developed into a raging, malaria-like 40C/104F degree fever complete with uncontrollable shivering, sweating and disorientation by early evening.

The "tight chest" was soon unbearably painful and, without the timely intervention of powerful antibiotics would almost certainly have progressed to pneumonia as it has done in the past. One advantage to having a recurrent illness is that the symptoms are familiar and the appropriate treatment can be administered immediately. Consequently, I was over the worst within a week but still remain weak and very tired.

Local and state authorities are interested in numerous cases of pneumonia and other extreme chest complaints occurring at the same time and place every year. After seven years, I do not believe I am jumping to conclusions in suggesting that during the hottest, driest time of year an airborne, infective agent may be responsible for the annual distribution pattern of serious chest infections. Unfortunately, our health system remains grossly under-resourced so nothing will happen unless I can find a way to pursue the matter, which should keep me busy.

Simply surviving the month kept me fully occupied and left me utterly exhausted so I have little to add other than that my neurological symptoms remain stable. This should be confirmed by next month's annual physical checkup.

April 1st 2007: 12th Month, March 2007

This final month included my annual physical examination, which revealed no worsening of neurological function in the past year. That is the eighth consecutive year of stable symptoms. Although there are still neurological problems they are relatively benign compared to the problems associated with ALS/MND.

I still have some neurological symptoms and saw a specialist neurologist to discover why my general pain levels have escalated in recent years and disabling "all over headaches" have become a near weekly occurrence. They start as an intense, rapid onset headache then spread to cause muscle spasms, pinched nerves and spreading pain. An initial treatment of spinal facet injections plus MRI investigation has now begun. Similar injections have not worked in the past but techniques have improved so if they work as predicted I should soon be able to resume more extensive physical activity again.

The only symptoms that are even vaguely related to my symptoms when diagnosed are infrequent, and usually fairly mild, fasciculations and muscle cramping. My left leg, arm and the side of my face are a little weak and I frequently feel fatigued. Unlike at the beginning of this study, I can walk freely, although walking long distances can sometimes cause problems. I no longer use a walking stick unless I am having an unusually bad day (now rare). My speech remains unaffected.

The neurologist I saw commented that from a basic neurological examination he would not have guessed I had once been diagnosed with ALS/MND. This is probably as good a comment with which to end my ten year study as I could wish for.

This concludes the tenth and final year of this study.

Although this website will be updated regularly, my neurological symptoms have remained stable and no further neurodegeneration has been recorded for eight years. Monthly study updates are not as relevant as when the study commenced and whilst I continue to follow my basic regimen my neurological symptoms remain relatively benign and manageable.

This year I battled not neurological symptoms but pain, the side effects of prescription medications and extreme inflammatory symptoms. These problems should be resolved to some extent in coming months.

I had the opportunity to try Xango (mangosteen juice) with good results. My inflammatory symptoms decreased whilst using Xango and my general activity levels increased, which was an excellent response.

Also, I was fortunate to be able to try Immunocal , with positive results. As with Xango, I experienced a decrease in inflammatory symptoms, pain levels and a consequent improvement in my activity and general wellbeing.

During the same period I was experimenting with prescription medications with little success and frequently unpleasant side effects. The reasons for this experimentation is not resolved and not ALS/MND related so it was only reported here when there were neurological side effects.

It is clear that I have an underlying problem with my immune and inflammatory response and this may be true many PALS but the progressive, degenerative symptoms and complications of ASL/MND overshadow what I have had the opportunity to observe and record.

After ten years I would conclude that by using combined antioxidants, making lifestyle changes, including improving my liver function and basic hydration, I have managed to halt the neurodegenerative process in my case. It could be argued that I would have recovered if I had done nothing but whilst I did nothing (because I was told nothing could be done) I got steadily worse. Only when I decided to do whatever it took to get well did I start to improve.

Over the years I experimented with numerous supplements and medications, some good and some ineffective or bad. Some I added to my basic regimen over the years and others, although highly recommended to treat ALS/MND, did not seem to improve on my original combination of supplements. This should be considered normal. If illness is caused by an imbalance, the supplements required to achieve balance will vary from person to person although the general principle to achieving that balance remains much the same.

From extensive feedback I know that a number of PALS have benefited to some extent from following a similar regimen to mine. The slower onset and atypical forms of ALS/MND seem to respond best to this regimen, particularly if instituted soon after diagnosis. PALS with more aggressive forms of the illness may experience a temporary slowing or improvement of symptoms but ultimately succumb to the illness regardless of what they try.

It is unfortunate that my regimen does not appear to be a cure or to help in every case but it is encouraging that there are things some PALS can do to slow or halt their illness. Perhaps this regimen in combination with other therapies may prove to be more universally helpful in the near future. We will never know unless we keep trying to help ourselves and sharing our findings until a cure is found for ALS/MND.

Above all it is important to maintain a positive mental attitude. Every cell in your body and mine is genetically encoded with the information to heal itself. The drive to be well may be the very thing that allows this innate healing process to occur. By assisting it with appropriate lifestyle changes and supplements that appear to help in treating ALS/MND many more PALS could survive until a definitive cure is found - and that may be happening as you are reading this.

Be well and happy.

Steven Shackel, April 1st 2007

This entire study would have been impossible without the assistance and unflagging support of Nature's Sunshine Australia. Indeed, there would have been no study and very probably no me to conduct the study. Nature's Sunshine supplied the quality herbs and supplements I required to conduct this study and could not possibly have been more generous and helpful at every stage.

I can highly recommend their products, their professionalism and prompt service and would like to thank Stephen Webster and Robyn McInness for their wonderful generousity for enabling this study and my ongoing research.

Visit the Nature's Sunshine Website for more information about this remarkable company.