Year Three
of Steven Shackel's ALS/MND Clinical Study
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I enter the third year of my study, April 1999 (and the fourth year of active research) more confident than ever that a cure for ALS/MND may be not only possible but reasonably imminent. Although we must remain pragmatic and cautious regarding claims of so called miracle cures, it is my opinion that if we can maintain good general health (most PALS die of secondary infections and complications rather than ALS/MND) we will soon be able to stabilise the symptoms and possibly discover a trigger, if not the cause, of ALS/MND. I could not have said this with any confidence as recently as eighteen months ago.
I will be exploring any reasonable possibilities this year and again combining both prescribed and supplementary medications where appropriate in an attempt to develop a regimen that produces positive results for me and could possibly be adapted by other PALS, their doctors and carers to help treat the symptoms of ALS/MND until something better becomes available. I feel that I have established that certain antioxidants, maintaining good liver function and some diet and lifestyle changes have slowed and stabilised my ALS/MND symptoms. My fundamental regimen is outlined and updated on My Regimen page. I would stress that this works for me and may not be appropriate for other PALS but, using common sense, the basic principles can be followed and are most unlikely to cause any harm.
I would once again like to thank Nature's Sunshine Products of Australia without whose assistance this ongoing study would be impossible. I can personally recommend their products and excellent service. See their website and full product range.
Another year and I suffered negligible neurodegeneration. Also another year of complicating secondary illnesses that, on careful reflection, may be related to my neurodegenerative illnesses. Although the illnesses have been unpleasant, their occurrence may indicate the direction that should be taken to discover a cure for ALS/MND.
Good and bad digestive function consistently coincided with neurological good and bad days. Sluggish digestion always coincided with worsened neurological and other symptoms. I have already embarked on a study of digestive enzymes, bacteria and other beneficial intestinal flora. It has been noted by some researchers that digestive dysfunction exacerbates illnesses such as chronic fatigue syndrome/myalgic encephalomyelitis. ["The group of viruses most commonly associated with M.E. ... include coxsackie and echo viruses. When the host immune response is ineffective, viral parasitism leads to mitochondrial damage with resultant energy deficits at cellular level." [Dowsett et al "Myalgic Encephalomyelitis - a persistent enterovirus infection?" Postgraduate medical Journal 66 (1990):526-30] This may relate to Dr Martina Berger's published findings on enterovirus infection in Cerebral Spinal Fluid of PALS.]
If some forms of ALS/MND are autoimmune illnesses, or are in some way linked to this class of illnesses, then closer study of them and the influence of digestive dysfunction may prove in order. Certainly my own research this past year has repeatedly recorded a possible correlation between the two. I believe that high dosage acidophilus and bifidobacteria may possibly assist with the digestion-related neurological symptoms and shall therefore be attempting to incorporate these in the coming year as part of my ongoing study.
Very early on, I felt that ALS/MND was probably (1) a co-infection (2) one manifestation of a "syndrome" rather than a single illness. Dr. Martina Berger has published the results of research indicating that entero and echo viruses seem to be involved (Neurology January 2000). A paper will soon be published regarding mycoplasmal involvement in the progress of ALS/MND. Neither a single viral infection nor a single mycoplasmal (or other cell-wall deficient organism) infection seems to answer all the questions but when you combine both a different picture emerges. It is difficult to tell in which order it occurs but one pathogen could disarm or debilitate the immune system enabling the other to migrate into the central nervous system (or other compromised areas of the body). The nature of the ensuing chronic illness depends on where the pathogen migrates to.
In short, I believe we are most likely dealing with an auto-immune illness triggered by co-infecting organisms. I further believe that some PALS may have several undiagnosed illnesses running concurrently which are masked by the devastating nerve/muscle degeneration of ALS/MND. We probably already have the medications to combat these pathogens but the manner in which they infect, replicate and migrate makes them hard to kill. Mycoplasmas can be killed with tetracyclines but if they are "hiding" in white blood cells (which should be killing, not harbouring the mycoplasma) we need something to "unlock" the infected cell or otherwise allow the medication access. A cocktail of medications would probably be the answer, an approach that has succeeded in treating HIV/AIDS. At this stage I would say that the cocktail will include conventional and supplementary medications.
The problem is, how do we find the recipe for the appropriate cocktail? Sharing data is essential. The medical and academic fraternities are disinclined to do that so we are left with PALS and their carers and the few research professionals who are open minded and open hearted enough to communicate with us. One thing is certain, things are looking far better now than they were seven years ago!
1st Month If you are familiar with this website you will know that I suffered severe and disabling spinal injuries several years before being diagnosed with ALS/MND. As noted in Phases One & Two, I have occasionally experienced spontaneous "flare ups" of various types that have affected my general health for no apparent reason. These exacerbations seem to be cyclical. This month I suffered yet another inexplicable worsening of non ALS/MND symptoms (which in turn caused increased fasciculations, etc., as previously noted, and these once again decreased as the other symptoms abated).
This month was a nightmare of severe pain and inflammation. To control this I was forced to take powerful prescribed analgesic and anti inflammatory medications. These have negative side effects including slowing digestion, impairing liver function and causing fatigue. This negated any data I could have collected this month. As I write this, the worst seems to be over.
The crisis passed as mysteriously as it arrived. I took no new medications or supplements, did nothing to provoke the nerve pain and inflammation and remain confused and bemused as to what could possibly have triggered the events of this month. In short, I have little to report that could be of relevance to those following the progress of this study but, as always, feel that such inexplicable "extremes" may ultimately provide useful data or lead to answers at some later stage.
The only change made in the last week of this month is a return to Allopurinol. As I need anti inflammatory medication at present, and all strong anti inflammatories have negative side effects, it seemed best to use an anti inflammatory compound that at least provided antioxidant benefits! My motto: "Always make the best of what you've got".
Blood drawn last month for possible Mycoplasma infection testing was sent to the wrong doctor at the wrong lab and the wrong tests were performed so I will have to apprise you of any developments in this area next month. There is no comparative "score" this month but I still keep the same records on my progress and am making more extensive notes on my progress. Any major changes that can be quantified will be reported here.
Although I was in far too much pain to walk (or even think!) on several occasions, I still managed to walk 2km and scuff through the antipodean autumn/fall leaves on all but my worst days. Other than a few frightening days and nights of bad fasciculations (the worst in over a year) I conclude the month with my ALS/MND symptoms remaining much the same as for most of last year and I even had a few days with few or no fasciculations.
2nd Month Using my old rating scale this would have been an average to good month with no major negative events and even one day with no fasciculations at all. To really "push the envelope" I walked a total of seven kilometres in one day with no negative side effects.
I took the opportunity this month to work on improving my digestion as this was a factor that proved to be significant in Phase Two. Nature's Sunshine were kind enough to supply their Protein Digestive Aid tablets which I took in addition to the herb centaury (tincture) 15 minutes before meals. The "bitter principle" of centaury stimulates the vagus nerve and kick-starts the digestive process prior to eating. Mediterranean style ante pasto salads including "bitter" salad greens achieve the same thing (nb. lemon juice, etc. are "sour" rather than "bitter").
I recorded far better days when my digestion was not sluggish. An obvious, and simplistic, explanation for this would be that liver function is less burdened if food is adequately digested and does not remain in the gut for longer than is necessary to absorb nutrients and expel wastes and toxins.
My blood test results are not yet available and I have heard that one part of the sequence was not completed due to a clerical error (another one!) so I may have to wait several more weeks before I can pursue the possibility of mycoplamal, rickettsial and other infections being a trigger or even the cause of my symptoms.
3rd Month A generally stable month with only a few "bad" days. These days coincided with sluggish or disturbed digestive function and/or stress, as noted previously in this ongoing study. Pain and inflammation (relating to pre-existing spinal injury) also increased on or around these days but was generally worse this month, for no obvious reason.
As it is cold and flu season in our part of the southern hemisphere, I took double doses of Astragalus to help prevent infection. It certainly seemed to help but I again noted a thick, heavy feeling in my leg muscles, particularly after exercise. This ceased soon after I stopped taking the Astragalus. Although too complex to discuss here, if ALS/MND is either triggered or caused by immune system dysfunction, it is logical that the immune system stimulating effect of astragalus would temporarily worsen existing symptoms. The reason for this is that, in autoimmune illnesses, the immune system is weak (and struggling to cope) and therefore overactive. Over stimulating the immune system may actually stress the body further. The approach of "moderation in all things" seems to be particularly appropriate in my case so I will be only using astragalus in lower doses until my immune system stabilises (Phase 2 recorded that my immune system was struggling to cope for most of that year).
I started taking DHEA this month but do not expect to see results until at least the end of next month. I will keep you informed. I am hoping to start creatine next month but delivery of my order has been delayed [I think I must have upset a witch doctor in my travels. I seem to be cursed to work twice as hard and wait twice as long for most things than normal people do]. I have been receiving good feedback from most PALS using creatine.
My mycoplasma blood test returned negative and I have since been informed that only the IMM laboratory in California is able to accurately test for all mycoplasmal infections in blood samples. I have been told that all PALS so far tested at the IMM laboratory have mycoplasma infections. In most cases, these infections are treatable. I have created a new page called "Mycoplasma" as I believe this area of research is extremely promising and worth following closely.
4th Month This month was stable and, apart from a few days near the beginning and end, was probably one of the best for some time. A full day with no fasciculations and several of my best walking days for some time. A major problem was avoiding the influenza epidemic that effected family, friends and neighbours. Not wanting to "stimulate" my immune system (see last month) I used double doses of garlic capsules to good effect. In simple terms, garlic "holds down" pathogens so that the immune system can deal with them more efficiently: immune function is therefore not over-stimulated. I suffered only the mildest symptoms and inconvenience, the worst of which was constantly attempting not to breath garlic on people!
I stopped the DHEA early in the month as my legs felt heavy and were fasciculating more than my "normal" levels. It's possible that I was on too high a dose of DHEA as another PALS reported a similar response to DHEA. I may try a lower dose at two day intervals at some stage and will report the outcome later. I was given enough Co-enzyme Q10 to take 90mg per day for the month but noticed no appreciable change in my condition. Several PALS have reported some benefit taking 450mg daily (5 times my dose) but this would cost around $250 per month - far more than I can afford, so my experience with Co-Q10 remains inconclusive.
My creatine powder, lost in the mail last month, finally arrived but I did not want to start taking it whilst on high doses of garlic and trying to assess the effect of low dose Co-Q10. Feedback from PALS using creatine has so far been extremely positive. The diuretic effect may be an inconvenience for some but, at this stage, the benefits reported seem to outweigh the need to urinate more frequently. I will start the creatine next month and will be monitoring my kidney function as this can be affected by high dose and/or long term creatine usage.
5th Month I finally started taking creatine. I did not "load up" for two weeks then decrease the daily dosage as recommended for athletes (although I am now fairly mobile I am still far from athletic!) instead, I started with the "maintenance" dose of 5mg of creatine powder per day. After a month I have noticed no obvious change in my condition but, as I am expecting to take this supplement on a long term basis, I will be happy with subtle changes, if any. [Incidentally I am now confident that the rare cases of kidney dysfunction attributed to creatine usage were due to excessive dose rates rather than creatine used sensibly]. I also started taking flax seed oil because of research I have undertaken into lipid (fat/cholesterol) and carbohydrate metabolisation and its possible relevance to ALS/MND. I had no idea that "expert" opinions about what comprises a "healthy" diet could be so utterly contradictory!
I eliminated processed sugar (as far as possible) from my diet this month as I believe it "short circuits" the metabolisation of complex carbohydrates and therefore may deprive the central nervous system of essential nutrients. I have observed that people who regularly crave a "sugar fix" (chocolate, soda, sweet coffee, etc.,) rapidly run low on energy. When processed sugars are avoided the body has time to metabolise nutrients from complex carbohydrates and energy levels fluctuate less. [I have added a new web page this month called Diet, which I will add to as I gradually cull the enormous and diverse quantity of data available].
I had more frequent fasciculations this month. As usual, they have been primarily in my legs and mainly on waking in the morning or resting after activity. My general pain levels were also higher and I experienced brief muscle cramps, especially in my neck and shoulders. It is most likely that this month's, almost cyclic, inflammatory condition is linked to the fasciculations (as it sometimes has been in the past) and the creatine did not cause them. Athletes, and some PALS have reported occasional cramping following creatine use. This may be a positive indication that it is working in my case. I will know more next month. On the whole though, this was a reasonable month with no extreme highs or lows recorded until the last few days.
I will be celebrating yet another birthday in the coming month (25th Sept). As I was originally told that future birthdays would be in short supply I can't begin to describe the satisfaction I derive from ticking them off the calendar each year! Needless to say, I'm looking forward to many more birthdays after this one and trust that you will also celebrate many birthdays in good health. :-)
6th Month Perplexing: that's my word for this month. If there was a pattern to the events of this month, I am unable to detect it. Fasciculation levels and frequency have fluctuated wildly as have energy levels, general health, moods, digestion, good days, bad days - and all for no apparent reason. A doctor friend suggested that the high pollen count (it's springtime in Australia) may be stressing my immune system. Although I am not allergic to pollen, my immune system may still be forced to deal with the high seasonal pollen levels and this could possibly be a reason for the unexplained fluctuations. This is pure conjecture but fits with the pattern of a stressed immune system triggering a negative neurological response, in my case.
I started the month by taking a chromium/yeast compound for reasons that will be apparent if you read the notes on chromium and the accumulating notes on diet. The chromium seemed to be beneficial for the first few days but a period of new, strong and widespread fasciculations prompted me to discontinue the supplementation after a week. I returned to "normal" within 48 hours.
Before I could attempt any other options another wave of fasciculations, low energy, etc. set in, this time without the introduction of a new supplement. And so my condition vacillated throughout the month. When following my fundamental regimen I usually remain relatively stable but this month has been an exception. As always, I tried to look for possible "positive" reasons and noted that I often improve after such, apparently random, health crises. Also this coincided with the twelve week "cycle" identified earlier this study.
I shall attempt to use the chromium again at a reduced dose level when I have remained stable for a week or two. Also I will assess flax seed oil to supply omega 3 and 6 fatty acids (I have tried this before but only at a low dose for a short period. Nature's Sunshine have kindly supplied some flax seed oil capsules for me to try at an appropriate time). As diet/digestion has been identified as a possible cause of my symptomatic fluctuations I am also experimenting with the temporary exclusion of various foods from my diet to assess if I have any food intolerances. This month it was pasta (some complex carbohydrates can be hard to metabolise and pasta has been a large part of my diet because it is cheap, quick and easy to prepare. I will not burden you with every detail of the various "background" areas I am constantly researching but I promise to pass on any relevant findings ).
It is hard not to feel that I have been "marking time" this month but, in the world of ALS/MND, that is no bad thing. As each month passes new research results and medical innovations are released. If we can all keep "marking time" we may soon benefit from the advances being made. At the time of writing I am feeling quite well and am looking forward to a more stable situation next month.
7th Month "And on the seventh month he rested..." Please excuse the oblique biblical reference but it pretty much sums up this month. I had intended to allow myself to stabilize on my basic regimen before assessing any new supplements but the stabilization process took me through to the third week of the month, leaving little time for experimentation. Rather than "waste" the time I continued to observe the effects of diet changes, excesses, etc.
On different (unplanned) occasions I ate pizza, cakes, cookies and drank a (very small but excellent) single malt scotch. After each incident I experienced a worsening of symptoms. I was not consciously attempting to prove that these things would cause problems but it became apparent after referring to my daily notes that something had triggered headache, digestive upset, muscle spasms and increased fasciculations in an otherwise stable period. As nothing else had changed, my reaction to things not normally included in my diet seemed to be the most likely cause of the symptoms.
Processed sugar in excess, (and that includes alcohol), definitely provoked a negative physiological response. This has also been observed by Ron White and I include excerpts from an article he wrote on the negative effects of processed carbohydrates on PALS (see article on my Diet page). I received Ron's article several weeks after I had published my own thoughts on possible affects of processed carbohydrates on inhibiting the metabolisation of more beneficial "complex" carbohydrates. We seem to have come to many of the same conclusions from different backgrounds and starting points.
I did stabilize after returning to my basic regimen and admit that it was a relief not to be pushing my body to the limit as I have been doing for so long. I seem to have established a regimen that works in my case but has yet to benefit from the addition of other supplements. I will, of course, continue experimenting with potentially beneficial supplements and medications as the opportunities arise.
Next month I shall be adding Ginger to my daily supplements, based on the positive effects on general health observed by Dr Andrew Weil (www.drweil.com). Ginger is a tonic and, among other things, has a beneficial effect on digestion if taken over a long period. As digestion seems to be a recurrent theme this year I am approaching it from many different directions in order to document the most beneficial supplements or dietary changes. It will take several months to assess benefits, if any.
8th Month The first half of this month really tested my resolve and my faith in what I am attempting to achieve. My old spinal injuries flared up and I was forced to lie very still and take strong painkillers in order to cope. The stress of the unrelenting pain plus taking the powerful analgesics threw my entire metabolism out of balance. Fasciculations and muscle spasms increased markedly and I was seriously concerned that something was terribly wrong.
It eventually occurred to me that one's immune system can cause dreadful (temporary) suffering whilst fighting off an influenza virus, for example. Fevers, shivering, cramps, vomiting and more can indicate that the immune system has "gone to war" with a viral invader. I did not have these particular symptoms and can't say if the cause of my discomfort was viral but feel that some type of an immune system response was occuring because I improved throughout the second half of the month. At the time of writing I now feel relatively "normal" with negligible fasciculations or other symptoms. I'm still a little "battle fatigued" but otherwise feeling fine. These unexplained "flare ups" that I experience again reminded that there may be an autoimmune element involved in my illness. My immune system is definitely doing battle with something on a regular basis and it may be these incidents that are slowing neurodegeneration in may case.
It was pointless attempting to experiment with new supplements, although I did continue taking ginger because the spinal problem was clearly worsening before I started taking the supplement. I can't comment on whether it has helped my digestion because the painkillers at the doses I was forced to take tend to upset digestion and liver function. Assessment of the supplemental ginger remains a long term project. To help combat the nerve root inflammation that was the cause of most of my pain I temporarily returned to allopurinol x 600mg daily. As before, I decided that if I was forced to take an anti inflammatory medication it may as well be one with a powerful, if indirect, antioxidant effect.
Another month and another piece of the jigsaw puzzle falls into place. If I have learned anything from this month it is to follow my own advice to other PALS - "never give up hope" and "keep on keeping on!"
9th Month Much of this month was needed to completely recover from the worst of last month. I also had to dodge the usual complications (changes in diet, routine, etc.) encountered during the Christmas/New Year holiday season! Consequently, the only significant change I made this month was to do as granny suggested and "take apple cider vinegar every day" to help minimise arthritic and other inflammatory pain. Apparently any benefits may take several weeks or even months to manifest. The concept is to "reduce systemic acidity" and therefore inflammation. Although acidic itself, apple cider vinegar is reputed (by millions of people throughout the world) to help - we shall see.
By keeping things simple I have experienced only infrequent and low intensity fasciculations this month. Another unexplained bonus has been an improvement in my sleep pattern. I am able to sleep longer and wake feeling more refreshed than I have in many years. I certainly hope this persists. My daily walks are still comfortable and there has been no obvious muscular deterioration. I again experienced several extremely painful days unattributable to anything I have done (e.g. exercise, diet or medication changes) and will be discussing these incidents with my doctor during the coming weeks.
I realised some time ago that recommended doses of supplementary medications are often calculated in much the same way as conventional pharmaceuticals. That is to say, if you have a headache you take a painkiller to relieve the symptom then discontinue the medication when the symptoms are gone. As this is not particularly applicable in treating chronic illnesses I am considering taking small doses of certain supplements every second or third day (even weekly) to obtain the benefits denied me if I react adversely to sustained high doses of those supplements. As I have repeatedly recorded adverse responses to supplements at the recommended (short term/acute disorder) dose I shall try this different approach. When adjusting diet to improve or maintain health, small amounts of vitamins, minerals, etc. are usually metabolised from food as required by the body. I am hoping to achieve a similar, long term, result using intermittent doses of supplements.
The complexity of assessing staggered doses will, of course, make it almost impossible to quantify effects in the short term but could provide useful data in the long term. I have occasionally tried taking sporadic doses of supplements that were not tolerated in previous trails and have so far experienced no obvious negative side effects. By adhering to my basic regimen I hope to maintain my current physical condition. Staggering doses of theoretically beneficial supplements may avoid the problems previously experienced and provide at least some of the potential benefits these supplements may offer.
10th Month A disappointing and painful start to my new millennium. Neurologically, I remain stable - the most important thing for now - but the inflammatory problems/pain I have been experiencing has been tentatively diagnosed as fibromyalgia. I shall know more when final test results are available. [Fibro.myalgia: pain in fibrous tissues, muscles, tendons, ligaments and other "white" connective tissue... often related to microtrauma factors].
Fibromyalgia sometimes follows disruption to the immune system by Epstein-Barr infections (see Phase 2, above) and has been associated with mycoplasma infections. As I increasingly suspect that ALS/MND may be a co-infection of some sort (at present the most likely candidates would be combined mycoplasmal and enterovirus infections) it is logical that, having successfully slowed neurological damage in my case, the infection could be manifesting in other ways. What initially appears to be (and feels like!) bad news may actually be good news if these infections can be successfully treated. I shall be exploring this possibility in the coming months.
To control the overwhelming pain, I have been taking powerful analgesics, anti inflammatories, receiving acupuncture, massage and anything else that could possibly help. The analgesics and anti-inflammatory medications have unpleasant side effects so this month has again been a wash-out as far as assessing the usefulness of supplements to treat ALS/MND. I have noted no worsening of neurological symptoms although the pain, medications and enforced inactivity have left me feeling weak, stiff and exhausted.
Looking back over these notes it would appear that I am a sickly individual, prone to illness and infection. Nothing could be further from the truth. Only since developing a neurodegenerative illness have I also experienced the systemic illnesses recorded here. The tentative diagnosis of fibromyalgia may be recent but the symptoms have been apparent, but masked by other complicating factors, for over a year. This would tend to indicate that I have been fairly successfully managing an illness that is difficult to treat. It again makes me think that the form of neurodegenerative illness I have is probably a type of auto immune disorder. This may be true of many people diagnosed with what we currently call ALS/MND. [There is some medical literature to support this idea but the most compelling data have yet to be published].
Whether triggered by errant cell-wall deficient organisms (e.g. mycoplasma rickettsiae), a virus or a combination of the two remains to be seen. By adopting my regimen I have plugged one "leak" but have not killed the pathogens causing or triggering the neurodegeneration or recent immune system dysfunction. Although the symptoms of these "extra" illnesses are unpleasant and sometimes disruptive to my study they are very likely caused by the same pathogen(s). This gives me hope that a cure may not only be possible but imminent for some forms of ALS/MND and apparently unrelated, chronic auto-immune disorders.
This month I discontinued allopurinol as it provided little anti- inflammatory relief in my current condition. Uncharacteristically for me, I intend to experiment with high dose levels of vitamin C for several weeks. I generally disagree with the "mega dose" approach to healing but there is some evidence to suggest that 10grams or more of vitamin C daily (in very simple terms) may "shock" one's immune system into recognizing and responding to certain chronic infections. In light of the possibility that the things happening to my body are all stemming from the same source, I shall start using supplements regardless of "non-neurological" symptoms. I have previously attempted to wait until (apparently) unrelated symptoms abated. It seems that I can no longer afford to wait that long!
As I write this I am in remarkably good spirits and, if anything, even more inspired and resolved to beat this thing once and for all.
P.S. I'm actually starting to like the taste of apple cider vinegar - will wonders never cease?
11th Month I'm pleased to report that I've remained neurologically stable this month with only occasional brief, low intensity fasciculations recorded. The aches and pains of the fibromyalgia were also less intense for most of this month. I only experienced a few "bad" days but otherwise remained fairly active. Once again, no news is good news.
There has been a great deal of encouraging ALS/MND research recently. One paper, soon to be published, has isolated a number of illnesses (including fibromyalgia) that often occur concurrently with ALS/MND but may remain undiagnosed because symptoms are masked as the complications of neurodegeneration worsen. It is somewhat ironic that my success in slowing the progress of one illness should facilitate the diagnosis of another. It certainly adds credibility to the idea that ALS/MND is possibly related to other auto-immune illnesses. This is good news for PALS because we may now benefit from a much broader medical research base.
Towards the end of this month I began experimenting with "saturation dose" vitamin C, mentioned last month. It is a treatment recommended for fibromyalgia and other autoimmune illnesses that may prove beneficial for some types of ALS/ MND. One increases the dose of vitamin C until it starts to cause diarrhoea then reduces the dose slightly. I noticed that, within days, pimples/pustules appeared on my skin over the most painful muscles/joints as my body attempted to release the 'toxic build-up" (lactic acid, etc.) from those areas. The symptoms mentioned disappeared after seven days in my case. I was assured this is a fairly normal reaction to sustained high doses of vitamin C. I shall let you know how I fare!
12th Month This final month of the third year was a relatively good one. I experienced several fasciculation free days. As my experimentation with high dose vitamin C seemed to produce only flatulence it took some resolve to persevere with it. After five weeks of an average daily dose of 15-18 grams (15,000-18,000mg) of slow release vitamin C any benefits are still not obvious. Perhaps my slightly improved month resulted from the vitamin C?
At my annual physical review this month I was pleased to discover (as I suspected) that there has been little neurodegeneration since this time last year. Although I have lost some muscle bulk in my arms and chest this can be explained by my reduced upper body activity levels (due to fibromyalgic pain). Hand strength remains good as do general reflexes. Wasted muscles (left arm and leg) remain unchanged but overall leg muscle bulk is identical to this time last year, thanks to my daily walks. Blood pressure slightly elevated (not dangerously so) but commensurate with pain/stress levels. Also my sleep pattern has deteriorated again and this could be partially affecting blood pressure. Neuritis, fasciculations and muscle spasms are still evident but sporadic and far lower than pre-study levels. Fibromyalgia could be responsible for some muscle spasms. Both doctor and I are extremely pleased with the overall picture compared to four years ago.
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