Causes and Cures

ALS causes

• Viral/prion......polio/ post-poliomielitis syndrome (PPS)/cjd/scrapie/bse/brain tissue

Prior to diagnosis [october 1994] ... trunk/.limb onset..both legs and arms I had vaccinations (Jan 94) for
1. Hepatitis A...havrix
2. Polio booster....imovax..pasteur merieux
3. Tetanus booster...
The New England Journal of Medicine had an interesting article on paralysis caused by injections given within 3 to 4 wks of live polio vaccinations in Romania....feb 1995 p. 500 approx.
on 1/2/94 I had 2nd part of havrix vaccination and in june 1994 right deltoid muscle ...significant muscle weakness
Sept 1994 I had 3rd part of havrix and in feb 1995 left deltoid muscle....significant muscle weakness.
Spring 1996: wheelchair.
  Summer 1997: breathing difficulties.
Spring 1998: still working from home, using as required oxygen, and the NIPPY (non invasive positive pressure ventilator).

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See Midennis@aol.com story below
"My ALS story starts like most others. In March of 1995 I noticed a very slight, and infrequent clonus in my right ankle. This was very easy to ignore. By May of 1995 I began to notice my knees bouncing when I applied firm pressure to the clutch or accelerator. Since I was driving a brand spanking new 1994 Ford Mustang GT Convertible, (everybody should own one just once!) I didn't think much of it. About this time I saw my doctor for an unrelated problem, and I mentioned this to him. He told me to get some exercise, and forget it. By late July I noticed my right foot would swell when walking for any distance. I just thought I needed some new shoes.

I believe this next event to be a key factor in my ALS disease: About the first of August 1995, I got the first of three vaccinations for Hepatitis B. (There’s an interesting research paper about Hep B antibodies and ALS) Right after this my symptoms worsened dramatically, and new ones appeared after this. By the first of September my right knee was very weak and would give out. I was supposed to get the second vaccination about the first of September, but the link in my mind was obvious, so I did not go back for the rest of the vaccinations. Things continued to rapidly deteriorate. By October I was having difficulty walking normally. I really didn't know what to make of all this. My overall health was excellent, and my family medical history was great. So I began to see a Chiropractor. By December the Chiropractor referred me to a Neurosurgeon. I'll spare you the details from there. Finally on April 2 1996, I received the limb onset ALS diagnosis from the University of Michigan Hospital. I received a second concurring ALS diagnosis 4 weeks later from a local Neurologist."


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Coincidence????............although I have no proof, I may have reacted mildly to my first polio vaccination as a child....late 1950's ??????.....have you had any similar stories
Check out Don Byrnes ALS story..viral damage to liver...I'm trying to check this out as Hep A seems to have a part to play.
• Injury... metabolic breakdown after injury, operations, dental work
• Toxin.. tetanus, Cycad nut, Botulism



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see query from australia ..perhaps this should be in the cures section below
"Steven, We have just watched a segment on a tv program called "Beyond 2000". where they are successfully treating children with Cerebal Palsy with Botulism injections. In a hospital in Ireland. The statement was made that the botuline created new nerve end growths although ALS/MND was not mentioned, you might be able to throw more light on this subject from your end, if not we will contact the TV program at this end. I couldn't beleive my eyes what it was doing for the kids.
Regards Jim.jdstyler@squirrel.com.au"

hospital is actually in northern ireland
name: musgrave park hospital, stockman's lane belfast BT975B
dr: dr aidan cosgrove


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• Environmental.. breathing/nuclear/Solvents/ Benzine...ITS ABILITY TO ISOLATE/MODIFY COMPLEX MOLECULES..carbon 60/72..SOOT FROM EXHAUSTS...could they cross the blood/brain barrier .....inhaled by the nose easily

I am interested in how benzine can isolate these very stable molecules.
It is the power of benzine which i wonder about....if benzine can isolate these very stable molecules..perhaps it can do the same for unstable molecules
the spark plug is an ideal arc...especially a dirty carbonized one.
petrol and diesel motors emit soot and unburned benzine compounds....these cocktails could be easily inhaled into the nose
QUOTE: royden@iinet.com
I'm curious about your suspicion about a link between Benzene and ALS. I haven't seen any studies showing elevated levels of Benzene in ALS patients, but I too believe that they are probably high. As I have said before, I was exposed to lots of xylene which if combined with mercury forms Methyl Mercury, but in the process leaves behind a Benzene molecule.
• Genetic.. SOD1/copper problems..trials with penicillamine have started. More genetic links have been observed..see Optimist's News
• Calcium imbalance.. nuclear fallout/chernobyl/thyroid/parathyroid links
• Immune dysfunction Theory: ...queries to Midennis@aol.com 

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  Cures

Conventional Medicine

• GLUTAMATE MODULATORS

Riluzole..... I've been on riluzole since mid nov...no improvement..perhaps even dis-improvement initially...but maybe this was due to stress from home modifications. i'm still on Riluzole..things have steadied up.
Gabapentin (Neurontin).... The drug has an affect on the glutemate, a natural amino acid in the brain and which tends to be too thick in ALS patients. It is toxic to motor neurons, and Gabapentin is known to thin this glutemate.
• SANOFI-WINTHROP

Trials have started worldwide using this new drug.
• NERVE GROWTH FACTORS...haven't been able to get my hands on these yet

Myotrophin.. a genetically engineered growth factor, IGF-1, thought to promote the survival of nerve cells and help them rebound after injury
Intrathecal BDNF.... patients who will receive BDNF directly into the spinal fluid using a Medtronic pump implanted in the abdomen with a catheter leading to the spinal column
Ciliary neurotrophic factor (CNTF).... by delivering a neurotrophic factor immediately adjacent to the spinal cord, CytoTherapeutics demonstrated success in delivering continuous amounts of targeted quantities of ciliary neurotrophic factor (CNTF). Systemic administration requires that large quantities of a substance be delivered throughout the body to assure that a small amount may ultimately pass across the blood-brain barrier where it is needed. By contrast, CytoTherapeutics'implants utilized in the trial were designed to deliver approximately 500 times less CNTF than had been delivered stemically in previous trials and to deliver this amount directly to the spinal fluid.
Human Neurturin.... a homologue of glial cell-line derived neurotrophic factor from Washington University in St. Louis. Neurturin promotes nerve cell growth and is a protectant of certain nerve cells.
Glial Growth Factor 2, or GGF2... GGF2 is a member of the neuregulin family of proteins produced by cells of the nervous system. Neuregulins are believed to play important roles during the development of the nervous system and during the regeneration of neural and muscular systems following damage.
• COPPER CHELATORS...trials starting in USA..Penicillamine....see my news page!
• PROCYSTEINE..... Procysteine is acysteine pro-drug that increases intracellular glutathione levels. Glutathione is a potent endogenous antioxidant. The researchers are conducting a Phase I study.
• VITAMINS...antioxidants galore...i'm now taking vits A, C, E as well
• BOTULINE...see above Toxin

Research Activities and Interests:

Our laboratory is investigating the molecular mechanisms of neurotoxicity, neural repair, and cellular signaling. Such techniques as cell culture, molecular cloning, protein biochemistry, in situ hybridization, autoradiography, immunohistochemistry, and protein phosphorylation are used in these studies.

We have recently focused on the role of nitric oxide in mediating neurotoxicity and are investigating the cellular control mechanisms that underlie cell death and signal transduction mediated by nitric oxide.

We are also actively investigating how the nervous system is influenced by immunophilins (drug-binding protein complexes that are potent inhibitors of the calcium/calmodulin-dependent protein phosphatase, calcineurin). The drugs FK506 and cyclosporin A both suppress the immune system, FK506 by interacting with FK506-binding proteins, and cyclosporin A by binding with cyclophilins. Our results to date indicate that the immunophilins may regulate such diverse physiologic processes as neurotransmitter release, neurotoxicity, and neuronal growth and regeneration.

Clinical Activities and Interests:

My main clinical interests are movement disorders and general neurology. The Movement Disorder Group is participating in several clinical trials that center on Parkinson disease. Our group also follows a large number of dystonia patients who receive injections of botulinum toxin regularly. Other movement disorders are followed as well.

Publications:

1. Dawson TM, Dawson VL, Snyder SH (1992) A novel neuronal messenger molecule in brain: The free radical, nitric oxide (NO). Ann Neurol 32:297-311.
2. Steiner JP, Dawson TM, Fotuhi M, Glatt CE, Snowman AM, Cohen N, Snyder SH (1992) High brain densities of the immunophilin FKBP co-localized with calcineurin. Nature 358:584-587.
3. Dawson TM, Arriza JL, Jaworsky DE, Borisy FF, Attramadal H, Lefkowitz RJ, Ronnett GV (1993) ß-Adrenergic receptor kinase and ß-arrestin-2 as mediators of olfactory desensitization. Science, 259:825-829.
4. Dawson TM, Steiner JP, Dawson VL, Uhl GR, Snyder SH (1993) The immunosuppressant, FK-506, enhances phosphorylation of nitric oxide synthase a possible mechanism and protects against glutamate neurotoxicity. Proc. Natl. Acad. Sci. U.S.A., in press.

Alternative Therapies

• Liver Rehabilitation .......Check out the Don Byrnes ALS story.
• Acupuncture..tried about 8 treatments...no major changes noted.
• Chelation........had 16 treatments, mainly to rid the body of heavy metals, free radicals, improve circulation by unclogging arteries. Overall felt that it was not a waste of money. it can be weakening due to the stripping of calcium from the system...supplementary calcium may be reqd.
• Bio-Energy......I tried this summer 94. I personally did not find of much use..it may be of benefit to those sensitive to the body's electricity. I was told that that i had an abnormality with my adrenal system.
• T.M........unfortunately due to poor breathing I have been unable to concentrate on any form of spiritual/holistic therapies.  Having said that I had been doing T. M. for  many months leading up to July 1997 and did find it useful.
• Prayer... again because of my experiences in July 1997 my faith in spiritual matter's totally disintegrated.  Perhaps it will return.  I had been doing plenty of this
• Aloe Vera juice.....  I do not take this and more.  "i am still taking the a.v juice..probably not as much...no magic cures i'm afraid. i need confirmation if a.v is indeed a natural chelating agent...this would tie in with the developments at ucla..see my news page - re copper chelation and the sod1 enzyme.
• Ginko Biloba.....i took some ginko biloba extract earlier in 95 because i had a low ringing in my ears ..like tinnitus.
• Neural Organisation Therapy.(N.O.T).....had some of this in 94. i'm told its a branch of kineasiology. a very enlightened gp in cork checked all my circuits to ensure that there were no damaged/injured connections.injuries which occurred during day and night were checked and adjusted.... thought it was of benefit..perhaps it was the caring doctor. I havent been back for a year, but occassionally listen to a special tape.
• Edgar Cayce.......i've been very interested in this, got some of his books..interesting stuff ok...i've got details of treatment for mnd. see below..an atkinson guy with mnd reckons he recovered from it using cayces stuff

ATKINSON ALS RECOVERY STUDY
I had the pleasure to meet David Atkinson this week. He is the man who has been subject of several articles on his remarkable reversal of his ALS condition dx in May of 1991. He is currently gathering data on others who have recovered or reversed ALS. So far he has verified 5 including himself and is investigating several others. Each case utilized different alternative treatments, but the common thread appears to be mental imagery. He is searching for more cases so that he might publish an article or book. Unfortunately he has no computer yet, so if you have a lead on an ALS reversal or recovery from a confirmed dx please write to : DAVID ATKINSON, 221 MCCOY ROAD, SALISBURY N.C. 28144-2221 U.S.A. Hopefully when David publishes this data we can stop deadhead neuros from saying no one has ever recovered from ALS...AND GIVE SOME HOPE TO THOSE WHO NEED IT. JOE SNYDER

• color therapy ....incl distant stuff...very vague stuff indeed...but..
• past lives.....I've been to Atlantis, Egypt, UK...perhaps
• shamanic stuff.....felt a little uncomfortable with this
• Yeast stuff..... Candida Wellness Center"
• Homeopathic remedies...i've been on a homeopathic trial   Since 1996.   Initially I was on a very dilute solution of Silica, then on an extract of the caroub bean, and now on polio remedy.
• tea of life / essiac tea...tried it for a while...must start again.
• bulls testicle massage on spine....hot from belgium....According to dr Vogel one has to massage the back, along the spinal cord, with mixed testicles of a young but adult bull