Jason's Neatest Guide to ALS - a Summary for ALS Patients of Key Steps, Medications, Supplements, and Other Things You Can Try

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Taken from this thread, see there for discussion and more information: [1]

NB: No one - not Jason, not me, no one - can guarantee that any of this information will help any particular patient diagnosed with ALS, or even guarantee that it won't be harmful. But what we can say is that it seems to have helped some people. Please do not use any document like this on its own - read it, and then also read the forum thread linked above, and google for particular medications and supplements so you know what effects they have and what side effects they might have. Start each new medication / supplement one at a time and see what effect it has on you before waiting a few days to start the next one.


Hello. I created this "Neatest Little Guide to ALS" to try and condense all of the scattered information out there about ALS into one thread. I will be updating and adding to it, periodically, to keep it up to date and make additions/corrections. Please correct any abnormalities you may find or make any new suggestions to it by sending me a PM. Thanks for your time and I hope you get what you need to improve quality of life and extend survival... Jason


35 Handy ALS Tips - The following are not in any particular order (I will try and put them in better order within time). They are, simply, suggestions for PALS (some early, some middle, some late-stage PALS)

1. Apply for SSDI immediately for benefits. They will expedite benefits for PALS.

2. See an Elder attorney as they will help with planning for the future.

3. Notify any life insurance policy and/or long term disability insurance companies to get premiums stopped immediately.

4. Notify any student loan debt companies and loans will be discharged.

5. Buy a new or used handicapped accessible van for transportation to plan ahead (they can be converted, too). This is important if you want to get out of the house some.

6. Convert your home - Get exterior door ramps, widen interior doorways to 32 or 36 inches, make appropriate bathroom modifications, and consider an electric lift for transferring from bed to wheelchair and back or even bathroom and back from the bed, if possible.

7. Have Medicare pay for the most expensive wheelchair allowed (for comfort and long term mobility). They will usually only pay for it once. I would recommend the Permobil C300 Powerchair with an air-filled seat. Best one on the market, in my opinion.

8. Record your voice saying the most common words, later which can be used for communication (using your own voice most of the time).

9. Consider getting the DynaVox Eyemax system for communication (it can control the internet, lights, ceiling fans, the bed, tv, stereo, your door, etc.). Quite amazing.

10. Consider getting the nicest hospital bed Medicare will rent out or buy. Get one with a comfortable mattress which auto turns and vibrates for comfort and to prevent bedsores.

11. Get a feeding tube early. This is very important for maintaining nutrition, strength, and extending survival, as is getting a BiPAP with a humidifier, very early (before FVC reaches 50% for sure, if not much sooner!). Again, early BiPAP, alone, double survival rates. An early feeding tube just adds to that number.

12. Use a cough assist vest as soon as needed. Very important to prevent Pneumonia and can extend survival, too.

13. To keep the diaphragm and lungs strong (for breathing), try blowing up small balloons daily. Doing just that has been proven to greatly preserve lung and diaphragm function (the pacer should not be an option as it has been shown to decrease survival).

14. Get psychological assistance to deal with the emotions you go through when diagnosed with an illness like ALS.

15. PALS, eventually, need occupational therapy as things get harder and harder.

16, It is EXTREMELY important you get 7-8 hours of sleep each night (with 6 of those between the hours of 9 pm and 3 am, as 9 pm is about the time when Melatonin starts to kick in).

17. Swim or Practice Aquatic Therapy (with assistance) if Possible - Swimming/aquatic therapy has been proven to be the best form of exercise there is for ALS.

18. Avoid any further exposure to heavy metals, chemicals, and/or other toxins of any sort.

19. Try and lower your stress levels. There are many ways to accomplish this, but stress can play a HUGE role in progression rate. Google some ideas.

20. Consider speech therapy if you are having bulbar issues. It can really improve the quality of your life, which is so important, IMO.

21. Try to visit a chiropractor, monthly. I am on the fence on this one, but you will feel so much better for a day or two coming out of an adjustment with heat and stimulation to weak areas of the body.

22. Again, focus on QUALITY of life, not quantity. We are all going to go, eventually, so take and do whatever you need to in order to make yourself as comfortable as possible.

23. Fast one day a month. Water only. It will reset blood sugar control, give your body a break to fight inflammation, improve blood pressure and cholesterol, is neuroprotective, boosts brain health, increases growth hormone secretion (which increases muscle strength), helps delay aging and extend longevity, plus may aid in cancer prevention.

24. Never get a root canal! Have it pulled before you have a root canal.

25. Laugh. Laughter can improve your mood and quality of life. Choose your pickings for ways to laugh. Lots of them, today.

26. Use an infrared sauna for 20 minutes a day three times a week. Increases heart rate, improves circulation, and helps removes toxins.

27. Move as much as possible throughout the day and disease process. Keeping muscles lightly active should increase strength and extend usage of them.

28. Lightly exercise (nothing strenuous). Brisk walks, if possible, and/or even light resistance exercises.

29. Do not smoke or drink. I think this one is an obvious one. I am, still, not convinced beer is neuroprotective based on conflicting studies.

30. Try to take deep breaths and exhale as hard and as much as possible to oxygenate tissues and rid build up of any carbon dioxide built up. Also, keeps lungs and diaphragm functioning longer.

31. Take time to just relax and think of pleasant thoughts while listening to relaxing music (i.e. rain, thunderstorms, etc.). Similar to meditation, just an easier way to explain it. Reduces stress, which can play a huge factor in progression.

32. Speaking of stress, try and find ways to decrease it as much as possible. Again, there are numerous studies pointing to stress accelerating the disease.

33. When the time comes and your muscles do weaken, too much, try to use braces (for your neck, hands, wrists, ankles, feet, etc.) to help support them and preserve strength in them.

34. If you are able to, take advantage of neuromuscular massages, acupuncture, range of motion exercises, and/or physical therapy.

35. If you are having difficulty swallowing, be sure to see a speech therapist for ideas on how to preserve function as well as helping you swallow more effectively.


7 Things to Possibly Try - We do not know the true mechanisms behind ALS, therefore, it is important to try as many things as possible earlier than later, separately, and in a timely manner to see if any of them make a difference in the quality of your life and/or progression rate.

1. Autoimmune Therapies - Dexamethasone, IVIG, Prednisone, Plaquenil, etc.

2. Strong Antibiotic - IV Ceftriaxone for 14 days. This should be done only early in the disease process, if possible.

3. Antivirals - Pyrimethamine. This is not only an antiviral, but it has also been proven to help lower tau proteins found in the CFS of up to 70% of PALS.

4. Antifungals - Diflucan, Itraconazole, Ketoconazole, Terbinafine, etc.

5. Propofol - This anesthetic is a tricky one to get. However, it can be tried via a colonoscopy or endoscopy if needed. There are several reports of it benefiting PALS here on the forum and elsewhere.

6. Sodium Chlorite - Debatable, but worth a try if you're willing to take the chance. The "go to" guy on SC is Siverfox (Tom). He is an expert on the stuff. Be careful with dosing. It is a DIY project.

7. Chelation Therapy - This is a treatment used for removing heavy metals (including mercury) from the blood. It involves intravenous injections of a chelating agent, EDTA, which a synthetic amino acid. EDTA binds to heavy metals and minerals in the blood so that they can be excreted in the urine. Another intravenous agent used by some physicians for mercury detoxification is called DMPS. Similar concept.


13 Suggested Medications to Consider For ALS - Use a commercial blender or a quality pill crusher for any of the applicable following medications if you have a PEG tube.

Cannabis - Researchers think Cannabis may help relieve pain, spasticity, drooling, appetite loss, and decrease drug-drug interactions and toxicity. Also, most importantly, it has been shown in studies to extensively extend survival. Use a legal source, of course, for product. Vaporizing is recommended.

Remeron - This is an interesting older tricyclic. It has been found to increase serotonin, epinephrine, and even dopamine levels (to a small degree). All improving depression, mood, and anxiety. The interesting thing about this drug is that it improves gut motility (going #2 more), has been shown to be neuroprotective, and helps you sleep better. It should be taken at night about an hour before bed (starting dosage is usually 7.5mg, but talk with your doctor). That is a lot of benefits in one medication!

Prednisone - This drug is a corticosteroid used to treat conditions such as arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, and especially immune system disorders (autoimmune disorders). Recommend 20mg, but talk to your doctor about dosage. Usually taken in the morning with breakfast or could cause difficulty sleeping.

Lyrica - This drug has been shown to improve muscle (and other) pain, help bloating, and reduce glutamate levels. It is best taken before meals for glutamate reduction and reducing bloating. Talk to your doctor about dosages for this scheduled medication.

Klonopin - This drug enhances the effects of GABA receptors, which are in charge of inhibiting neurotransmitters. Klonopin blocks arousal in the brain from stimulating pathways that can lead to anxiety. In other words, it relaxes you and helps any anxiety and sleep problems you may have. A scheduled drug, so talk to your doctor about dosage, but best taken at bedtime, or an hour before bedtime, to assist with sleep, too. Long-acting Medication.

Testosterone Injections - Injections work the best. All other methods tend to be inferior to injections (or do not work at all). This is a very common problem in PALS (low testosterone). It is very important to keep testosterone levels up. Usually self-injected once a month. Dosage may vary depending on your current levels.

Zyrtec - This drug is an antihistamine that reduces the effects of the natural chemical histamine in the body. Histamine can produce symptoms of sneezing, itching, watery eyes, and runny nose. Basically, it helps reduce inflammation within certain areas of the body. Dosage is 10mg and usually best taken at night to open up nasal passages for better breathing. Anytime is fine, however.

Walgreen's Dye-Free Low Dose (81mg) Aspirin - Mary Reid, a very respected member of this forum, highly touts baby aspirin for PALS. This brand is the only aluminum free baby aspirin money can buy. Also, can help prevent heart attacks from preventing blood clots to form. Best taken at bedtime.

Metformin - This medication, whether you have diabetes or not, helps prevent blood sugar spikes after eating a meal. A large meal (and subsequent blood sugar spike) will trigger neuroinflammation. The trick is how to obtain it without having Type 2 Diabetes? I'll leave that one to your imagination when getting your fasting bloodwork done :) Recommended dose is 500mg before a meal.

Losartan/HCTZ - This medication is a combination product that contains 2 medications used to lower high blood pressure (hypertension), losartan and hydrochlorothiazide. Always good to keep your blood pressure down to a normal range as you age. Dosage depends on whether you have mild or severe high BP. Talk to your doctor about dosage. Best taken at night before bed (it has shown to prevent more "nighttime heart attacks" taken then).

Nuedexta - Combination of Dextromethorphan and Quinidine. This medication is used to better manage increasing bulbar problems you may be experiencing. Again, the earlier it is started, the better. The recommended dosage is one 20mg/10mg capsule once a day for two weeks with breakfast then two capsules a day thereafter (one with breakfast and one at bedtime).

Theophylline - Any PALS who is having difficulty breathing (and not vented) should consider Theophylline. It is an older drug but is used to prevent and treat wheezing, shortness of breath, and chest tightness caused by asthma, chronic bronchitis, emphysema, and other lung diseases. It relaxes and opens air passages in the lungs, making it easier to breathe. Talk to your doctor about dosing.

Crestor - Unlike a lot of others on here, I believe this medicine is a must to keep cholesterol levels (and inflammation) in check. Have your leves checked, first, to see what they are. However, if elevated at all, I recommend starting Crestor. This medication lowers high cholesterol levels and slows plaque buildup in your arteries, too. Unlike other statins, Crestor has, also, been shown to be neuroprotective. Yes, neuroprotective. Be sure to take this medication at bedtime and take it with Ubiquinol (100mg). Crestor dosages vary depending on current levels, so speak to your doctor about the dosage.

      • If you suffer from GERD, I believe the absolute best medication for it is Dexilant. I went from Nexium to Dexilant and improved my GERD dramatically! The only downside is the cost. Some insurances are making you try other PPIs, first, to see if they work or not before jumping to Dexilant. This drug created a huge improvement in my life.


15 Best Supplements to Consider For ALS (in order of importance, IMO) - I have provided no links, so buy these wherever you can find them the cheapest. Pick and choose, if you must, but they are listed in order of importance, IMO.

NWC Total Nutrition Supplement - 100% natural whole food multi-vitamin, multi-mineral, greens from superfoods, minerals from patented amino-acid chelates, antioxidants from whole food sources, 17 digestive enzymes, pre-biotics, pro-biotics, B complex, D3, amino acids, trace minerals, just about everything one would ever need in a multi (hence, "total nutrition"). I have never found a multi that included as many things as this one. BEST supplement to take, alone, if you don't have much of a "supplement budget". This would be the ONE I would take in a heartbeat over any other multi or supplement, below. Take as directed.

Gluzin (zinc gluconate) Supplement - The benefits of Gluzin are long. The results of the study and diy trial, myself and Riku, did here in this very forum, showed elevated free copper levels in, nearly, every PALS in our study. Gluzin did a nice job in many at lowering free copper levels. In addition, a major benefit reported was a slowing and/or halt in FVC decline by some PALS. So, this one is a biggie to try and include on your list. I suggest taking 50-100mg (depending on your free copper levels when tested). Take before meals. * NOTE - Gluzin is the recommended product to take, but zinc gluconate is fine if your budget will not allow it.

Astaxanthin Supplement (isolated from microalgae) - This supplement was listed as number one on the ORAC Value list. Extremely beneficial for providing antioxidant value. The best one I could find was a 12mg "one a day" triple strength softgel containing cold-pressed organic coconut oil as well (a big plus). Astaxanthin is lipid-soluble and should be taken with a fat. This is why they blend their Astaxanthin with cold-pressed organic virgin coconut oil to aid with absorption. It is made by Sports Research and contains 60 softgels in a bottle. Highly recommended supplement considering it is number one on the list in ORAC (antioxidant) Values.

Grapeseed Extract With Resveratrol Supplement - This one is very high on the ORAC Value list, so it is a must, too (due to its' antioxidant benefits). Grape seed extract helps poor circulation, high cholesterol, reduces swelling caused by injury, and helps with eye disease. Lots of benefits. In addition, if you buy the LEF brand, it includes Resveratrol (another supplement high on the ORAC Value antioxidant list). Take as directed.

Acai Berry and Pomegranate Fruit Extract Supplement - Acai Berries and Pomegranate are, both, very high on the ORAC Value list for antioxidant benefits. I suggest Pure Inventions liquid drop version to mix in with your water. Take as directed.

LEF TMG Supplement - PALS tend to have elevated homocysteine levels. Research has demonstrated TMG’s ability to promote healthy levels of homocysteine and confirms its' status as an important nutrient for overall health. It has been proven to lower homocysteine and concentrations of C-reactive protein levels. Capsules. Take as directed.

LEF Vitamin D3 and K2 With Sea Iodine Supplement - The benefits of Vitamin D3 are becoming much more prevalent. A lot of PALS are deficient in D3, so a very important supplement (especially if deficient). Too many benefits to list, tbh. It is virtually impossible to obtain adequate vitamin D and Vitamin K from food sources, so all the more important. Take as directed.

1MD Curcumin Extract Supplement - Absolute best brand of Curcumin/Turmeric out there, IMO. Not only is Curcumin/Turmeric high on the ORAC Value list, but it is also getting more and more recognized for its' anti-inflammation benefits. Formulated with Longvida. Longvida is formulated to cross the blood-brain barrier so it is most effective against cognitive impairment and/or injury. Take as directed (sometimes difficult to find).

B12 (as methylcobalamin) Supplement - Any brand is fine, as long as it is as methylcobalamin. This is a very important supplement if you have low B12 levels. Get them checked. Vitamin B-12 (as methylcobalamin) is a water-soluble vitamin that plays essential roles in red blood cell formation, cell metabolism, nerve function and the production of DNA. I suggest 2.5mg (or 2500mcg) Methyl B-12 by GNC. Take as directed.

LEF Mitochondrial Energy Optimizer with PQQ Supplement - Best product on the market for mitochondrial health, IMO. It was formulated to enhance mitochondrial function, protect delicate cellular structures, power-charge metabolic processes, aid in the creation of new mitochondria, and inhibit inflammatory factors. Lots of benefits. Take as directed.

LEF Glutathione, Cysteine, and C Supplement - Well, this is a long explanation for each of these, but important to know about. Capsule based. Glutathione is a peptide molecule synthesized in the body from the three amino acids L-glutamic acid, L-cysteine and glycine. Glutathione is one of the body’s most important and powerful antioxidants, helping to detoxify xenobiotics. A major function of vitamin C is to keep glutathione in its reduced form so that it can continue to provide free radical-quenching effects. L-cysteine is a conditionally essential amino acid, one of only three sulfur-containing amino acids, the others being taurine (which can be produced from L-cysteine) and L-methionine (from which L-cysteine can be produced in the body by a multi-step process). Cysteine plays a role in the sulfation cycle, acting as a sulfur donor in phase II detoxification and as a methyl donor in the conversion of homocysteine to methionine. Cysteine also helps synthesize glutathione, the body’s most important intracellular antioxidant, and a vital detoxifier. Vitamin C, or ascorbic acid, is a white, crystalline, water-soluble substance found in citrus fruits. As an antioxidant, vitamin C scavenges free radicals in the body and protects tissues from oxidative stress.17-24 Vitamin C also promotes the absorption of iron, while inhibiting its oxidation. Vitamin C is a vital cofactor to the formation of collagen, the connective tissue that supports arterial walls, skin, bones, and teeth. So, there you have it. Take as directed.

LEF Super-Absorbable CoQ10 (Ubiquinone) with d-Limonene Supplement - Coenzyme Q10 is an essential component of healthy mitochondrial function. In addition, if you are on a statin, it is a must to take with your statin. The d-Limonene is a natural compound in orange oil that disperses and breaks down the CoQ10 particles, which reduces their size and makes CoQ10 more absorbable by the body. Take with a meal or as directed.

Nordic Naturals DHA XTRA Supplement - IF you are not a big wild salmon eater (from the recommended ALS diet), then you probably should consider this supplement. DHA Xtra offers maximum levels of omega-3 DHA benefits to support cognition, memory, nervous system health and emotional well-being.

Magnesium Citrate Supplement - As a glutamate antagonist and GABA agonist, magnesium citrate also retains water in the intestine, softening stools and inducing the urge to defecate. It is a fairly good treatment for constipation. It has also been proven to reduce muscle cramps.

Digestive Enzymes - Greatly helps break down foods to preserve your energy (a must need with ALS). I take the Enzymedica brand which also contains probiotics as an added benefit. Take as directed. Enzyme deficiencies may result from a combination of age, diet, and lifestyle. These deficiencies can lead to a variety of digestive discomforts, including occasional gas, bloating, irregularity and indigestion. Probiotics provide additional digestive support by boosting enzyme production and promoting regularity.


Best Diet to Consider For ALS - This diet is very limited and boring, however, it eliminates, nearly, all "the bad stuff" in foods. This includes glutamate, soy, casein, dairy, gluten, sugar, pesticides, etc. Try to include as many calories and as much protein as possible (mainly, eggs, chicken, and wild salmon) to maintain your muscle mass/strength/weight. Also, most of these foods provide high antioxidant values. Consider taking a 5-10 minute walk, too, after eating. This helps prevent blood sugar spikes. Try to eat smaller more frequent meals a day (but make lunch your biggest) and do not eat four hours before bedtime (except for organic eggs, a "sleep food". Water is fine. These foods can be blended with a commercial blender for PEG tube use. If you have GERD or digestion problems, try mixing 2tbsp of organic apple cider vinegar mixed with 2tbsp of distilled water and drink or place in PEG before meals.

Organic eggs

Organic Chicken Breast Wild Salmon

Organic Raspberries Organic Blackberries Organic Strawberries Organic Peaches

Organic Broccoli Organic Cauliflower Organic Carrots

Drink 1-2 Liters of Distilled Water a Day


  • Use Organic Extra Virgin Olive Oil or Spray to Cook With (you could also pour olive oil over some foods) *
  • Use Organic Sea Salt and/or Black Pepper For Seasoning *
  • You May, Also, Use Oregeno and Turmeric Seasoning as Both Have Been Found to Help Protein Misfolding *
  • The Best Ways to Cook are Steaming, Baking, or Sauteing Foods Longer at a Low Temperature *
  • Try and Stick With Stainless Steel Products For Cooking (not aluminum, copper, etc.)


Although the above is my suggested diet for ALS, the following have the highest ORAC Values (in order) from highest to lowest based on research. What are ORAC Values? ORAC Values are antioxidant values of foods, beverages, spices, etc. The antioxidant values of foods are usually expressed in ORAC (Oxygen Radical Absorbance Capacity) units, a unit of measurement for antioxidant content which was originally developed by the National Institute on Aging (NIA) at the National Institutes of Health (NIH). I have saved you much time by researching, in order, which foods, spices, etc. are best to take from highest to lowest. Again, the above is the absolute best diet for ALS, IMO, but if you include other foods, drinks, spices, etc. in your diet, I would include the following.

Dried Oregano Dried Thyme Ground Cinnamon Ground Turmeric Ground Allspice Dried Parsley Dried Basil Curry Powder Ground Ginger Black Pepper Chili Powder Paprika Dark Chocolate Black Raspberries Pecans Golden Apples Elderberries Fresh Oregano Walnuts Black Raspberry Juice Golden Raisins Wild Blueberries Dried Pears Cranberries Black Beans Jalapeño Peppers Pinto Beans Pistachios Milk Chocolate Dried Apples Garlic (raw or powder) Chocolate Syrup Cilantro Fresh Basil Almonds Cherries Oranges Red Wine Smooth Peanut Butter Peanuts Cabbage (preferably red) Grape Juice Corn Flakes Blueberry Juice Granola Asparagus Chives Prune Juice Cashews Nachos and Cheese Oreos Grapes Popcorn Macadamia Nuts Baked Potatoes (with skin) Grapefruit Green Lettuce Red Onions Whole Grain Products Chocolate Chip Cookies Green Tea Coconut Oil White and Yellow Onions Bacon Red Peppers Lime Juice Green Beans Bananas Butter Corn Orange Juice Yellow Peppers Tomato Sauce Brownies Maple Syrup Apple Cider Vinegar Pineapples Celery Blueberry Muffins Canola Oil Red Wine Vinegar Honey Kale Brussel Sprouts Spinach Quinoa


Lab Abnormalities in ALS - This thread I created (and contributed to by others) contains most of the lab abnormalities of ALS known to science - The goal would be IF you have ANY of these lab abnormalities, try to correct as many of them as possible! This thread, IMO, is an extremely important thread since we do not know much about the mechanisms of ALS. Correcting any of these you may have abnormal may slow or even halt the progression of your disease. Of course, there is a chance it may work the other way around, too, so just watch what happens when you try and correct any lab abnormalities.

[2]


My Own Lab and Other Abnormalities - The following lab and other abnormalities are mine. Please keep in mind I have not included the dates when these were performed. I have corrected as many of them as I possibly could have since they came up abnormal (at least once).

Allergic to Dust Mites, Cockroaches and Ragweed Elevated ANA (smooth, speckled and nucleolar pattern - 1:1280) Large Amorphous Crystals in the Urine Low Complement C4 (<10) Elevated EBV ab VCA, IgM (29 AU) Elevated EBV ab VCA, IgG (128 AU) Low Potassium (3.0 MEQ/L) Low CK (31 U/L) Low Aldolase (1.0 U/L) Elevated Thyroid Antithyroglobulin Antibodies (1644 IU/mL) Elevated Thyroid Peroxidase Antibodies (1375 IU/mL) Elevated Complement or CH50 (63 U/mL) Elevated Dilute Russell’s Viper Venom (50.9 Seconds) Low HDL (23 mg/dL) Elevated LDL (163 mg/dL) Elevated Total Cholesterol (225 mg/dL) Elevated Apolipoprotein B (97 mg/dL) Elevated Apolipoprotein B/A-1 Ratio (.8 ratio units) Trace of Protein in the Urine Elevated ANCA-PR3 (12.2 EU/ML) Elevated Urine Creatinine (314.2 MG/DL) Elevated ALT (57 IU/L) Low Vitamin B Low Vitamin D (19 ng/mL) Low FSH (1.4 mIU/mL) Low Prolactin (3.7 ng/mL) Elevated Homocysteine (15.4) Trace of Keytones in the Urine Low Copper (6 ug/dL) Low Ceruloplasmin (17.8 mg/dL) Low Serotonin (9 ng/mL) Elevated Serotonin (413 ng/mL) High Normal Zinc (147 ug/dL) Elevated Transferrin (372 mg/dL) Elevated 24 Hour Urine Gadolinium (.4 ug/24h) High Normal 24 Hour Urine Barium (8 ug/24h) Low Normal 24 Hour Urine Growth Hormone (.7 ng/24h) Elevated Plasma Glutamine (782.0 umol/L) Low Plasma Arginine (20.6 umol/L) Low Dihydrotestosterone (20 ng/dL) Low Ferritin (24 ng/mL) Elevated Free Copper (calculate from previous 15.4 copper and 92 ceruloplasmin) Low CD4 % (28.4%) Mucus Threads in Urine Low Total Serum Testosterone (270 ng/dL) Low Free Serum Testosterone (7.8 pg/mL) Elevated Iron (157 ug/dL) Low Normal Urine PH Level (6.0) Low Serum Growth Hormone (<.1 ng/mL) High Normal Plasma Epinephrine (58 pg/mL) Low Normal Plasma Dopamine (<10 pg/mL) Elevated Apolipoprotein B/A-1 Ratio (.8) Low Sex Hormone Binding Globulin (16.4 nmol/L) Elevated 24 Hour Urine Protein (15.8 mg/dL)

Low Serum Zinc (based on integrative vitamin profile test) Low Serum Glutathione (based on integrative vitamin profile test) Low Serum Total Antioxidants (based on integrative vitamin test) Elevated Adipic Acid (based on integrative metabolic analysis test) Elevated 5-HIAA (based on integrative metabolic analysis test) Elevated Alpha-ketoisovaleric Acid (based on integrative metabolic analysis test) Elevated Alpha-keto-beta-methylvaleric Acid (based on integrative metabolic test) Abnormal Neurotransmitters (see integrative or pharmasan lab test) GNB3 Polymorphism (based on cardiogenomics test) CETP Chromosome 16 Polymorphism (based on cardiogenomics test) Rsa I Polymorphism (based on cardiogenomics test)

SELE Chromosome 1 S128R Polymorphism GNB3 Chromosome 12 825C-T Polymorphism APOE Chromosome 19 Result is 3/3 Elevated Fecal sIgA in Stool Sample (173 mg/dL) Elevated Anti-gliadin sIgA in Stool Sample (18.8 mg/dL) Elevated Triglycerides in Stool Sample (136 mg/dL) Elevated LCFAs in Stool Sample (11.2 mmol/L) Elevated Total Fat in Stool Sample (16.1 mmol/L)


Venting - If you are thinking about choosing to live on a ventilator and/or become immobile, the following things are important to consider/remember.

1. You will need help with trache suctioning and wound care, cough assist treatments, PEG feedings and wound care (assuming you have a PEG tube), quality supply and machine care for all of the former, frequent vital and body sign checks (especially eye changes, skin changes, O2 level drops from a finger pulse ox, body temperature changes, and/or any other signs of infection - treat any signs of infection immediately upon anything negatively discovered).

2. You will need PT/OT (stretching, range of motion exercises, and gentle massage therapy to prevent contractures).

3. You will need help going to the restroom (or use appropriate medical products to use from the bed if desired).

4. You will need help with shaving (with anything needing to be shaved).

5. You will need help with oral and dental care.

6. You will need help bathing and/or showering.

7. You will need help with putting deodorant on and/or any other makeup/topical creams/lotions as desired.

8. You will need help getting dressed and undressed.

9. You will need help with bed positioning (unless you have a bed which auto turns you to prevent bed sores).

10. You will need help with weekly fingernail and toenail cuttings (in-home if possible).

11. You will need help with any haircuts and eyebrow/nose hair trimmings needed.(in-home if possible).

12. You will need help arranging doctor appointments and/or bloodwork taken (in-home if possible).

13. You will need your teeth cleaned once every six months to a year (in-home if possible).

14. You will need annual ear wax removal if you build up earwax (in-home if possible).

15. You will need an annual eye exam (in-home if possible).

  • NOTE - To prevent complications and illness if mostly or fully immobile in a bedroom or other room, have placed a hand sanitizing unit on the wall and have everone who enters and exits use it. Be sure an annual flu shot at the beginning of October each year is obtained. Again, skin and eye changes, a temperature, plus O2 level drops from a finger pulse ox may indicate infection. Make sure any new infection is treated immediately and aggressively. To help prevent blood clots, be sure you are given baby aspirin each night and/or have compression stockings put on. Bed sores can be prevented by recognizing any pain in certain areas which is not normal, noticing any new itching/redness on the skin, getting regularly bathed, and being turned frequently in bed (or auto turned if bed is capable).


HOPE - 12 Other Drugs and Treatments to Keep an Eye On or Enroll In a Trial For if Applicable

Nurown - https://www.nasdaq.com/press-release/brainstorm-to-present-nurown-phase-3-study-update-at-the-9th-annual-california-als-research-summit-20190111-00002

QurAlis - https://alsnewstoday.com/2019/01/09/enclear-developer-device-slow-als-spins-out-of-quralis/

Cu-ATSM - https://alsnewstoday.com/2019/01/10/cuatsm-may-slow-als-progression-improve-cognition-respiration-phase-1-trial/

Telbivudine - https://www.sciencedaily.com/releases/2018/12/181218123120.htm

AT-1501 - https://alsnewstoday.com/2018/12/03/first-human-trial-als-treatment-candidate-at-1501-begins-dosing/

Radicava - https://alsnewstoday.com/approved-treatments/

Gene Therapy - https://www.biospace.com/article/possible-cure-for-lou-gehrig-s-disease/

Ibudilast With Riluzole - https://alsnewstoday.com/2018/07/11/phase-2-als-trial-shows-ibudilast-rilutek-improves-function/

AstroRx - https://alsnewstoday.com/2018/06/11/als-trial-recruiting-test-astrorx-potential-stem-cell-therapy/

Treg Cell Therapy - https://alsnewstoday.com/2018/06/07/study-reveals-potential-treg-immune-cells-slow-als-progression/

Masitinib With Riluzole - https://alsnewstoday.com/2018/05/30/ab-science-not-pursuing-ema-reexamination-marketing-approval-masitinib-als-treatment/

Neural Stem Stell Transplant - https://alsnewstoday.com/2018/05/08/neural-stem-cell-transplants-als-patients-may-improve-survival-function/