What Worked for Me

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ProHealth, Oct 23, 2006.

  1. IowaMorningGlory

    IowaMorningGlory New Member

    For others out there, that are in the same boat as me financially and have FM.

    I too am a nurse, or had been for at least 9 years and a manager of an assisted living for two. It was the stress and surgery then pnuemo that did me in.

    What I do is what I can afford. If you can afford supplements, thats great. I wish I could! (I at least have insurance that will cover my meds but not supplements or herbs, etc.) I totally believe if I could all these would help and make my life easier.

    Relieve stress, that would be great but I have two teenage boys, do foster care for another teenage boy and cannot work currently!

    What do I do that helps:
    1) First and formost...have a great general practioner!
    2) Tramadol four times a day (for pain)
    3) Lyrica two times a day (for pain)
    4) No Xanax under any conditions, it interfers with the Lyrica.
    5) Relpax for Migraines
    6) Rantadine for reflux
    7) Aleve for aches in joints that the others do not reach
    8) Crochet (when my shoulders do not ache)
    9) Sleep on my couch (I haven't slept in my bed for 6 months) *I have tried but just cannot do it and cannot afford a different bed.
    10) Keep my house cool (under 70) especially at night because of the night sweats.
    11) A lot of liquids to keep my bowels regular and my joints less painful
    * I cannot take prednisone or codiene as I have very painful reactions to these meds. They make my symptoms worse.

    A healthier diet would be great, but it takes all I have to fix three teenage boys and my husband something to eat, let alone try to change my eating habits. Unfortunately, healthier means more expensive, and I just can't do that.

    I don't know if this will be much help, but I hope it helps others out there that are where I am at.

    My hopes is that someday healthcare will realize the benefits of natural remedies and homeopathy medicine and it will be a part of prescriptions, but unfortunately our healthcare system leaves a lot of room for improvement yet. (Sigh, I should know, I am in healthcare!)

    Everyone, take care and have a blessed day,
    IowaMorningGlory
    [This Message was Edited on 11/05/2006]
    [This Message was Edited on 11/05/2006]
  2. lalalala

    lalalala New Member

    HOW MUCH AMBROTOSE DID YOU TAKE EACH DAY
  3. lalalala

    lalalala New Member

    HOW MUCH OF THE AMBROTOSE ARE YOU TAKING. I'M THINKING OF TRYING THAT ROUTE.
  4. dooker

    dooker New Member

    Hi There,

    It is amazing that others have done almost exactly what I have to get better. Here is my list:

    1) Elimination of gluten, sulphites, processed foods, sugar, alcohol, salt, coffee from my diet.
    2) Complete and total avoidance of almost all chemicals, including cleaners, fragrance soaps, shampoos, fabric softeners, new plastics, new vehicles, formaldehyde.
    3) Avoidance of most stores and malls (when possible)
    4) Increase the amount of organic foods.
    5) Regular exercise.
    6) Remove all carpet in my house, and use the best filters for my furnace.

    Thanks for the opportunity to submit my two cents worth!


    [This Message was Edited on 11/07/2006]
  5. m3891644018

    m3891644018 New Member

    Wow! Woke up without pain for the first time I can remember! The mattress topper seems to conform to whatever position your body is in and support it! I feel great!
  6. beejn

    beejn New Member

    I have this shake every day. To suit your taste add the ingredients in 1/4 to 1/2 cup intervals except the powder...Fresh frozen Blueberries, Strawberries, Unsweetened Apple Juice, Plain Yogurt, and 1 scoop of this powder, Nature's Plus Brand Spiru-tein High Protien Powder ( Available at GNC online) It comes in Strawberry, Vanilla & Chocolate flavors. I am partial to the Vanilla in this shake. I have lost a tremendous amount of weight by supplementing with this and felt better every day before the weight loss even started. It is rather exspensive so I wouldnt start it until you know youll be able to keep it going. Years ago, when my disease symptoms first started, I had one every day, and then finaces dictated I couldnt afford to stay on it. I went into the worst stage's of the illness after that. Medications were cheaper through our insurance company, and I stayed on them for over four years. They kept me going. Now I am able to stay off of all the RX'S. I also use one other supplement with each meal, Acidophilus...this is a great product! It illiminates the explosion in the intestines with any foods I eat, and the swelling. My intestines are shot from this illness. I have found by paying attention to what foods do to them, has helped. I only eat few amounts of poultry and fish. The rest of my diet is basically Salad lettuces. It takes some getting used to, but the benefits of feeling so much better outweigh the foods I cant have. Just experiment and be patient. It is true that most of the foods americans grew up on are unsuitable for "(Most)" of us with this Illness. Also I have found I am my own phychiatrist when one isnt available. I keep myself strong and encouraged...stress free, as much as possible, is very important to my energy levels.I have changed because of CFS/FMS but I still want to live... the best I can each day. Keeping foods that are good for my body in my intestines so the nutrients can be absorbed is also a big help. The IBS drugs dont help me, so these are things I have done to help myself in place of them. I am not free of symptoms, I still have days of fever and pain, however I am so much better every day that goes by then the day before. And I am a functioning part of my life. I wish you all a great holiday season. Beejn
  7. Gia_artist

    Gia_artist New Member

    Aside from medicine and supplements - I reluctantly joined Curves at the urging of my doctor...wow, I can't believe the difference only 3 weeks later.

    I can really pace myself and I am more mobile and more able to adapt to the machines every day, I found there were other FM sufferers as well as arthritis and a variety of other disabilities that people have that go there, one lady shows up with her walker everyday! The age range there is mostly in the late thirties to late eighties! They've inspired me!!!
  8. donnamaria62

    donnamaria62 New Member


    I have had ebv for 4yrs...i have tried numerous things...untill i discovered this supplement called immunical..my daughters teacher's wife has a severe immune disease since she was young...she was in and out of hospitals or bedridden...she almost died 3 times...well, i would see her out and about...she had changed doctors and he recommended trying this supplement. It was
    discovered by two doctors...celine dion's husband was on it when he
    had cancer...it is derived from milk...milk was suppose to be a immune
    booster but the pasterizing destroys this supplement.. these two
    doctors managed to put it in powder form ...it is similar to mothers
    breast milk...if you could just try it for one month...what do you
    have to lose...I take one packet of the immunical platuim a day...if i miss taking it for two days..i get sick..so i up to two packets a day untill i feel better...now the teachers wife takes up to 4 packets a day..the web site is immunitec.com...before i found out about this supplement...what help me ..was having my little maltese dog gino next to me the whole time..i didn't feel so alone or as depressed...i do have a husband and kids..but thier lives still went on while mind was at a stand still...my heart goes out to all of you...
  9. lamb10

    lamb10 New Member

    Yes, I would say, that is pretty much the way I got throught it also, was from nutrition, starting with the probiotics to strengthen my stomach, and then on a course of natural herbs and vitamins for all the ails that accompanied my CFS. I got a virus just awhile ago, which really wiped me out also, my have been taking natural anti inflamatoris from a naturopath, as my liver doesn't tolerate drugs at all
  10. Jimbei

    Jimbei New Member

    I can't be entirely sure, since I have been on a plethora of supplements, but I do think that these two have helped the most

    Transfer factor
    5 mushroom extract

    Both are meant to dramatically boost your Natural Killer cells, which are essential for viral infections. My practitioner has had consistent success with these for viral induced cfs.

    Regards

    James
  11. Dee50

    Dee50 New Member

    Guai Procotol-tons of RO water daily-Ultram ER for pain. I'm not in bed 24/7 so I'll keep with this program. I'm not cured but I am better and not worse for the time being.
    Dee50 :}
    [This Message was Edited on 11/30/2006]
  12. Catseye

    Catseye New Member

    Some updates are at the end.

    Most of this is not necessary if you just accept the fact that CFS is merely the end result of gut dysbiosis. A regular medical doctor cannot help you with this. They probably can't spell it or even know what it is. It means the bad bacteria and other harmful organisms in the gut, like yeast, are overpopulated. Yes, it's really that simple. Unfortunately, healing it is not. You need a whole slew of special supplements and a very "carb restricted" diet. Don't believe it? Then stay sick, it's a free country and you're certainly entitled to.

    May 2008 note: I would suggest first for anyone to attempt to get better they check out the "how to heal your gut" information at beatcfsandfms.org. They finally made me realize the importance of proper digestive functioning and that you can't guess if it's functioning properly. If you're here, then it's bad even if everything is going in and coming out like you think it should. You have to have tests done. And these are tests that regular doctors cannot interpret and make recommendations about. I am being helped by a doctor who understands digestion and its relationship to cfs and he can be found at becomehealthynow.

    The treatment protocol I'm on now is working and I wish I had known about it sooner. See my thread on "comprehensive stool analysis" for more details. If you want to get well, digestion has to be fixed. It's the main component of cfs and our symptoms are the results of nutritional deficiencies brought on by an inadequate nutrient absorption capability of the digestive system. While you're fixing digestion, there are many supplements that can help with symptoms, that's what I've been running down for so long. So the rest of this is about our symptoms and manipulating them with supplements. But you can save yourself much time, money and agony if you do the above first.

    For anyone who can't afford to buy a bunch of supplements, I suggest acquiring as many credit cards as you can and then filing bankruptcy over and over. I know someone who does this, or at least used to. I understand they changed the bankruptcy laws a few years ago to make it more difficult, but if you're already bedridden and about to lose everything, then you have nothing MORE to lose by trying it. You need to give the body what it needs to function. "Supplements" is an all encompassing term for nutrients and other things, don't let the word turn you off. The body is a chemical factory, and you will have to supply some of the chemicals in supplement form because our CFS bodies have quit making them in any adequte amount. Examples: coq10, ribose, non-essential amino acids, enzymes (too many to list), hormones, hormone precursors.

    There are tons of others and we all have our particular chemical soup that is in different amounts, but you can buy them. Try to figure out the most common ones, like the ones I've listed, and take them. Don't try just one or two and expect results. If you are deficient in 20 things and you supplement one, you aren't going to feel much different. Take them all. I know that sounds simple, but it isn't. You have to read and research and try to figure out which ones you can take and make sure you know the reactions with meds, if any. I've already done most of it, so read on. Focus is on: adrenal glands, hormone imbalances, mitochondrial function (Krebs cycle) and liver function.

    Doctors will not treat you with what your body needs, but only with drugs. If you don't believe this, then you have to research this subject and get past this hurdle. Doctors and drug companies exist to make money, not to cure illnesses. You need things like coq10, magnesium, amino acids, enzymes, etc, and your doctor will not recommend ANY of these. To quote Robert Ripley: "Believe it or not". But if you don't, you will suffer at the hands of your doctors for years. I would much rather recommend that you do the immoral thing with credit cards and bankruptcy rather than lay around suffering in agony while your life slips through your fingers.

    I originally started this in December. It is now the middle of May (now it's Oct, I keep updating) and as helpful as all these things are, I would encourage anyone to take a look at the methylation protocol either first or in addition to this. I had followed these things since November and improved greatly, though slowly. I think my liver was the biggest problem I had. Since I've been doing the methylation supplements, about 1 week, I have improved even more and have been able to cut out the great majority of my pills in the past 2 days. I'm not sure how prepared for the methylation protocol my protocol made me but since it is simple and much less expensive, I would try it first.

    But the basics here will still stand: clean diet, amino acids (esp. if you have a brain fog/neurotransmitter problem) and mitochondrial support, all mentioned in detail below. And when you try the methylation protocol, it is better to keep any dose of TMG (trimethylglycine) to a minimum (like 50 mg in Yasko's recommended vitamin supp) so if you are using Dr. Teitelbaum's powder, be aware that it contains 750 mg of betaine, aka TMG. Rich has also pointed out that high doses of choline will also hinder the methionine pathway so things with lots of choline are detrimental to the methylation protocol and should be cut out or reduced. One thing that contains choline is lecithin, which is in eggs and also in Green Vibrance green food powder supplement. I have had to stop them for the methylation protocol to work.

    Also, important for EVERYONE: take bioactive forms of B vitamins. These vitamins must be converted by the liver into usable forms the body can use. That's how your blood level of a vitamin can be normal but you are still "deficient" in it because the liver is unable to convert it to its bioactive form. I use Country Life's B vitamin complex along with the methylation supplements. The Country Life B complex does not have the bioactive form of folic acid, only the bioactive forms of some of the other Bs, but the folate (bioactive form of folic acid) is extremely important. I noticed a huge difference in how I felt as soon as I started on the Country Life Bs AND when I started the Folapro (folate in the methylation protocol).

    Another great working supplement is Coenzyme A. It contains the precursors for coenzyme A, an extremely important enzyme in the body. Two of the ingredients are bioactive forms of vitamins B5 and B6. I take this about 4-5 times per day, even the middle of the night if I don't feel good, and it's making it possible for me to go out at night.

    So right now, my most important supps are: free form amino acids, methylation protocol supps, Coenzyme A, mitochondria fuels, Krebs cycle chelates and fish oil.


    AT THE END I WILL PUT A SHORT VERSION: WHAT I'M TAKING AND WHY FOR THOSE WHO CAN'T READ ALOT

    OKAY, FINALLY FINISHED

    First of all, about supplements and drugs. There are 2 drugs I take on a daily basis: dilantin for seizures that I've had since I was 15 and anti-diuretic hormone for diabetes insipidus which I developed in 2006. I don't take any of the cfs drugs because I've never seen a competent doctor who could have given them to me and now, since I'm outside the US, I'm really totally on my own. I order the supplements I can't buy here and have them shipped to me about every 2 months or so.

    The great majority of the supplements I take are substances that we are supposed to be able to obtain from food or we are supposed to be able to make in our bodies using raw materials: foods, vitamins, minerals. I think we are all deficient in a different combination of things due to damage to different metabolic systems. So we either are not absorbing enough of the nutrients from the food we're eating or we aren't making sufficient quantities of the substances we need or both. Why my doctor is not allowed to tell me about these things but I can find doctors online (like Cheney and Teitelbaum) who will tell me is just baffling to me. They need to make clear their job descriptions: sell tests, drugs and surgery. They cannot recommend anything else. Drugs are man made creations that are patentable and, therefore, profitable. Supplements are not; they are found only in nature, even though some may be expensive. Alot of supplements, by the way, will take care of alot of things people use drugs for. It's easy to find some, just google with the words "natural remedies" in front of whatever ailment you are searching for.

    I have looked at the drugs that Cheney and Teitelbaum recommend and when I have decided I have that particular problem, I look for supplements that have the same effect as that drug.

    I came across Teitelbaum and Cheney's protocols just this year. I wish I had seen them sooner. It took me months to go through them and understand them and finally come up with what to do. This is something I can't finish in one sitting so I'll come back and edit it a little at a time until I'm done. I'll say when I'm done.
    This is for people who can't go through the whole thing. I"ll just say what I think is important and I won't include all details, or you'll crash!

    I'll start with Cheney's

    He has different phases and treatments steps.

    Phase I you're in when:

    Phase I is usually triggered by a virus. They stimulate RNase-L, an anti-viral enzyme. The reason it's bad is it destroys messenger RNA which disrupts protein synthesis in cells. This is vital. There are like 50,000 proteins in your body running errands. RNase-L stays active too long disrupting protein synthesis everywhere and eventually the liver is affected (has hightest protein synthesis rate in the body) and can't detoxify the body.

    Phase II:

    the body is now being affected by toxins the liver can't remove or can't remove fast enough.

    Phase III:

    now toxins not only inhibit cell function, they invade and injure the central nervous system, doing damage to brain, spinal chord and hypothalamus. These centers regulate heartbeat, blood pressure, body chemistry, metabolism, in other words, everything. HPA axis is damaged causing hormone imbalances.

    Don't panic, Cheney says damage is not permanent.
    there's really a lot to this but I'm sacrificing detail to conserve neurotransmitters!

    Cheney says to add a new supplement every 2 weeks to make sure everything sets well with you. If you're in really bad shape, feeling horrible all the time, this is a good idea. At least until you start feeling better.

    In the first part, I have not worried about everything. This deals with mostly drugs for immune system, depression, really bad cognitive disturbances, anxiety and mental stuff. I couldn't read (only for a minute or so at a time) but was trying to avoid any brain drugs. Plus I was not depressed even though some dumb shrink tried to convince me I was.
    These are Treatment Overviews, look ahead for TREATMENT

    Okay, Treatment for Phase I deals with:

    Ampligen
    Anti microbial therapy
    immune modulation (you want th2 to shift to th1 because activation of th1 will reduce RNase-L)
    anticoagulant therapy

    I had already done the anti-viral chemotherapy for hep c; pure hell but that's another post.

    So you do what you have to with regards to your particular infection, anti virals or whatever. And if you have a coagulation issue with blood, you address it, you may need heparin. The supplement for too thick blood is nattokinase but I haven't tried it. I know someone who used it and it worked.

    And address the possibility of parasites, or rather, take something for them; we all have them. You could do a formal cleanse and take some supplements for them. Black walnut, wormwood and cloves freshly ground is a good combination. Do for about 10 days then stop for 2 weeks and do again if necessary. If you have liver issues, the black walnut may be too much. Select something else or start with small doses to see if it makes you feel bad. The liver is very delicate. If you take something it doesn't like, you'll know it in a few minutes. Grapefruit seed extract (not to be confused with grapeseed extract) is a good one. It does not interfere with medication like grapefruit juice. Olive leaf is another good one. A good quality colloidal silver or a zapper are other things you can get.
    UPDATE: The most effective natural antibiotic you can get is garlic. Eat a raw garlic clove everyday. You may have to start with 1/4 clove to make sure it doesn't affect you badly, like having die-off symptoms. It is very powerful but it MUST be raw. In fact, if you're sick like strep throat or something, garlic will wipe it out pretty quickly - at least, it did for me. Hard to believe something so common and simple can be used but it's true. Can you imagine the harm to sales of antibiotics if this simple secret got out? Yes, it is too good to be true, but that's the beauty of it. It is quicker than pharmaceutical antibiotics, and it generally won't make you feel bad or do harm to your liver like the drugs will. Try it and see the next time you get sick. And it will keep parasites at bay, too. It's best to just eat some every day for maintenance.

    I don't see any point in getting tested for parasites. The tests are not reliable and they'll just want to give you antibiotics which you should avoid unless your life is threatened.

    If you need pointers on treatment for these things above, look at his Treatment Overview for Phase I. I got rid of my virus but I believe my immune system was still out of balance. So now I'm working on shifting it back to normal. Again, there are tests but I'm assuming it's th2 overactive with RNase-L doing damage. So supplements for shifting th2 to th1:

    transfer factor
    deer antler velvet - I'm using
    IP6 - I'm using
    colostrum
    beta glucan - I'm using
    probiotics - I'm using
    chlorella (also for heavy metals, esp mercury) - I'm using
    noni
    neem
    dhea
    pine bark extract is also pycnogenol (same chemicals)
    glutathione - we need a whole paragraph on this, very important

    Glutathione - main body detoxifier next to growth hormone. It's vital. Supplementing with pills or IV usually doesn't work, it's very poorly absorbed. Take NAC (I'm using), maybe 250 mg 2-4 times a day. If the liver is in bad shape, this may be toxic to it, start slow. This will produce glutathione. So will undenatured whey powder, available from immunesupport. But if you have a dairy intolerance, probably not a good idea. I tried it and sneezed the next day. If you're in really bad shape, try just a little bit first! Like 1/2 teaspoon. If you're detoxing, that's one thing. But if you sneeze or get an allergic reaction, it will just harrass the immune system. Same with transfer factor which is from colostrum. It made me sneeze. Glutathione is included here but it isn't only for the th2-th1 shift, YOU HAVE TO HAVE IT TO GET BETTER.

    I have no idea if my th2 is being shifted or not. I guess the only way is to get tested. But the supplements don't seem to be hurting anything so I'm going to assume they're working and continue to take them for awhile.

    One good thing about th2 being overactive - we don't get cancer! The bad is that th1 is the one that gets rid of viruses which may be a problem if you have an infection.

    Most of these above supplements I looked up and found myself, Cheney only mentioned 1 or 2 and a few drugs for the th2-th1 shift.

    Treatment for Phase II

    detoxification
    B12
    MSM
    whey protein
    TMG and phosphatidly choline
    guaifenesin
    growth hormone

    Cheney likes the hydroxycobalamin version of B12. I can only get cyanocobalamin, the molecule is coupled with cyanide so maybe it will be toxic to some. I'm using about 5000 mcg in the butt every 3 days.

    MSM - very good detoxifier. I take 3 grams a day now. He says work up to 6-9 grams. Go slow or you'll over-detoxify. It is also effective against yeast, it melts it. Supposed to relieve pain well, too, but I don't have any so I don't know. Take alone on empty stomach, may bind with vitamins and especially minerals.

    Whey protein for glutathione.

    Here I'm adding TMG, trimethylglycine and phosphatidyl choline. The first is an amino acid that reduces homocysteine levels. This helps tremendously. The phosphatidyl choline is a potent liver protector and precursor to neurotransmitter acetycholine. Avoid these if doing methylation protocol.

    Guaifenesin is a drug I haven't used, he recommends for detoxification and pain..

    Growth hormone, best detoxifier of all and repairs body, look at the posts for it. That'll save me alot of writing. Can be a godsend or a ticket to hell, depending. I'm getting some and going to try it without a doctor's help. Probably a pretty stupid thing to do but I've been lucky so far. Cheney says if you do .2 mg once a week, 99.9% of people don't have a problem. Too much will crash you. Supposed to work really well with fetal bovine growth factors.



    Phase III Treatment

    Growth Hormone
    Bovine Growth Factors

    TREATMENT

    Okay, here's what I did:
    INCLUDING WHAT I'M TAKING AND WHY

    Most of the "why" is that we're malnourished, that means all our blood vitamins and minerals are "normal" but obviously, our bodies aren't able to absorb or use them fully so you have to supplement with extra and they have to be highly absorbable forms of the vitamins and minerals. For example, magnesium oxide is not an easily absorbable form but magnesium glycinate is. Even if you are eating healthy, at least until you "catch up", then you can quit them or use intermittently. Don't get "cheap" stuff that will just pass through your body, pay attention to what you buy.

    1. Rest alot, guard against doing stupid things. If you have terrible brain fog, make a list of your mistakes and things that made you crash and look at the list every once in awhile. I have a "Rules for Living" that I review every now and then. The thing is not to crash. Mitochondria need to heal and waste needs to be cleaned from the body.

    2. Food elimination diet - don't waste time with allergy testing, too many false positives. Main food intolerances are to: wheat (it's the gluten, also in oats), dairy, soy, peanuts, corn, eggs. Quit all dairy and wheat, no cheese, yogurt, bread, pasta, basically, anything yummy. These aren't symptoms that you can say "oh, I just ate some cheese and now I feel bad so I can't tolerate dairy". No, it's more like "oh, I stopped dairy a couple of weeks ago and now I'm starting to feel better and my brain fog has decreased." Food intolerance means you won't know if it's a problem until you give it up for at least a few weeks and get it all out of your system. There are tons of gluten free foods in health food stores, breads and crackers and stuff but don't get a bunch of gluten-free junk food with a ton of sugar. You can also get gluten free flour so you can still have cakes or bread that you make yourself. Example to eat: rice crackers, sesame crackers, veggie soups, turkey jerky. Big health food stores have lots of bins with stuff like dried fruits, spiced nuts and trail mixes. The best things you can do are to eat tons of veggies and drink green juices. Veggies with many colors boiled together will taste better than any alone and boiled in chicken broth will be even better, but get broth without msg. Green juices with a centrifugal juicer will contain alot of cellulose and be hard to digest, if you can afford to, get a good one. Don't underestimate the healing power of nasty, green juices. I just had some with beet, spinach, carrot, garlic and celery. Lemon juice makes it easier to get down. This stuff is really horrible but really powerful. If you feel like crap, once you start seeing how much better you feel after drinking these, you won't mind having to "force it down". And all the supplements in the world will not help you if your body is having to fight against and recover from food it does not want.

    3. Avoid sugar and nutrasweet; for sweetener, use stevia. No sodas.

    4. Fat intake under 30 grams, avoid saturated. Take fatty acid supplements, fish oil, primrose oil, flax seed oil.

    5. Avoid red meat, hard to digest and full of saturated fat.

    6. Use digestive enzymes with every meal and betaine hcl with meats if you feel too full after eating protein; you may not have enough stomach acid. Make sure there is enough protease. Pancreatin is very good. I started with a cheap one that turned out to be useless and eventually I found the amazing Garden of Life Omega zymes.

    7. If you can exercise a little, then bounce. If you have to, do it lying in bed, your legs and arms. This is how astronauts recuperate from anti-gravity. Helps immune system by increasing flow of lymph, too.

    8. Be damn careful not to crash. What I do is lie down every once in awhile if I'm "active" and I can tell by how fatigued I feel if I have done too much and need to lie still for awhile or if I can continue in a few minutes.

    9. Expand blood volume. I use Electrolyte Stamina twice a day or you can make one: 1 cup water, 1 cup seltzer water, 1 tsp sea salt, 1/2 tsp potassium with stevia or herbal teabag. Drink 3-4 glasses a day. Make sure blood pressure doesn't get too high.

    10. Do breath holding exercise to increase oxygen transport: inhale for 4 seconds, hold breath 7 seconds, breathe out through pursed lips creating back pressure for 8 seconds. Repeat 8 times twice a day or until dizzy.
    Gets easier after awhile. Make take weeks to show improvement, important. This fools your body into thinking it is at a higher altitude and it increases a chemical that in turn increases oxygen transport.

    11. Any body energy work is good: acupuncture, acupressure, massages, reflexology, chiropractor, etc. All help central nervous system. Again, DO NOT UNDERESTIMATE THE POWER OF THESE METHODS!!! The chiropractor got me out of bed even though I had no pain and the acupressurist has me feeling like I did before I got ill. You may have to try a few different methods or different practitioners, but this stuff works! There are energies in your body that science has not figured out how to measure, yet. Roentgen discovered xrays and Newton discovered the spectrum but that doesn't mean they didn't exist before they were "discovered, tested and categorized".

    12. Meditation. I use a light and sound machine, also. They include programs that put me to sleep in 5 minutes. Also, DVDs are available at Amazon that you put in your computer or DVD player and stare at and listen to binaural beats. There is also a free program download of binaural beats called sbagen for the computer savy that you can use on your pc with headphones.

    13. Sleep is a must to make growth hormone. 5htp, valerian - an herb, melatonin -sleep hormone, these and sleep formulas you can get at any health food store. If you have to, use drugs. I slept okay as soon as I used the mitochondrial stuff (later) and desmopressin anti diuretic hormone for frequent urination at night.

    14. Magnesium and taurine injections are recommended but I don't do them. The Daily Energy Enfusion powder has 200 mg of mag glycinate and I take a chelated mineral supplement (Kreb's Cycle Chelates, very absorbable) with a total daily mag intake of about 500-600 mg. Magnesium aspartate 250 mg with potassium aspartate 250 mg twice daily. Easily absorbable forms and the aspartates help the body get rid of ammonia which causes damage. Mag and Pot aspartate have been studied on cfs patients with positive results: increase in energy!

    15. Cheney says vitamins without iron and copper but I take Teitelbaum's Daily Energy Enfusion powder which has copper. I can't live without this powder. I can't do full scoop at once or it overwhelms my liver; I do 1/4 scoop 4-5 times per day. Avoid if on methylation protocol.

    16. Extra Vitamin c 2-4 grams a day. Make sure you take vit C and E with bioflavanoids or they can increase oxidative stress. see #21 Also should be taken with MSM.

    17. Mitochondrial fuel: CoQ10, at least 300 mg per day (oil based form is more absorbable and more expensive), magnesium 400mg - 1000 mg per day, acetyl l carnitine 500 mg 2-4 times per day, ribose 10-15 grams per day (I only use about 5 grams per day because it can cause hypoglycemic symptoms over 10 grams) and nadh sublingual first thing in morning. These are our cell engines, this is where energy begins! They create waste just like a car engine and probably have been damaged by buildup of waste. Be very careful of hypoglycemia. Ribose and coq10 can both lower blood sugar levels and also excess nadh can build up in your system and slow down gluconeogenesis in the liver, causing hypoglycemia. If you start experiencing hypoglycemic symptoms, you'll have to adjust all these accordingly. Stop them and maybe add back very small doses once the hypo is under control and you feel you may benefit from them.

    18. Whey protein for amino acids. Great tasting shakes, any flavor you want. Mix with water or rice milk. Since liver is down and can't store anything, don't take whole scoop at once, split up throughout the day. Use caution if dairy intolerance, whey protein concentrate may be best. You need aminos and probably aren't getting them in sufficient quantities from diet because your body can't absorb, process and assimilate nutrients as well when it's sick. Free form aminos are easily utilized by the body. Even if you don't think you have indigestion because you have no discomfort doesn't mean you are, in fact, digesting and breaking down food properly. You are here, after all.

    19. Alpha lipoic acid 100-300 mg per day. Major antioxidant. Also plays a part in the energy cycle.

    20. Essential Fatty Acid supplements, fish oil, primrose oil, flax oil. You want Omega 3s and Omega 6s.

    21. Bioflavanoids. Quercetin (take with vit c), sylimarin (milk thistle), green tea, gingko biloba, pycnogenol, grape seed extract. They are the natural pigments in fruits and veggies, one of the reasons you need to eat them.

    22. B12 5000 mcg shot every 3 days or 10000 mcg once a week. Don't be concerned if it turns your urine pink the day of the shot.

    23. To reduce homocysteine: folic acid, pyridoxal 5 phosphate (activated enzyme of B6), TMG (also known as betaine) and L Serine (amino acids, already in daily energy enfusion).
    I take folic acid 2x per day and TMG 2x per day. Homocysteine levels are usually raised in cfs patients. It's raised when these vitamins are deficient and is a marker of increased risk of heart attack and stroke. Also linked to increase fractures in elderly persons. Avoid if doing methylation protocol.

    24. Phosphatidyl choline (which is in lecithin) is good for the liver and the body needs it. Also phosphatidyl serine is a precursor to several neurotransmitters so it may help with brain fog. Avoid if on methylation protocol.

    25. Adrenal and thyroid support: I got tested for blood levels of these and it was a waste of time. They are all normal but you can tell by symptoms the glands aren't working properly. Things these glands need to work and that will help them: adrenals: vit c, vit b5 and b6, TMG, tyrosine, licorice, adrenal cortex extract. Thyroid: vit b12, iodine, magnesium, zinc, copper, molybdenum, tyrosine, multi-glandular complex. Make sure these things are in your diet if you suspect trouble with these glands.

    26. In addition to amino acid formulas, I take methionine (detox support), acetyl l carnitine (most absorbable form of carnitine, body can make it but probably doesn't, important for energy), NAC (makes glutathione), carnosine, (helps against formation of AGE products), taurine (detox support) and arginine (helps turn ammonia into urea so you can eliminate it). Also, I take SAMe every morning, very important for liver. Again, my body is not making it in sufficient quantities.

    27. The patented glyconutrient blend Ambrotose has helped alot with detox symptoms, brain fog and energy. You can probably research glyconutrients and find cheaper ways to get them but I was feeling too bad so I caved.

    28. I had some luck using dhea and pregnenolone when I suspected hormones weren't in balance. Your body can use them to make all other hormones. I only needed a small amount, about 15 mg of each. Really helped with adrenal fatigue. Used until I didn't need them anymore, about 3 weeks. These I used in Sep.

    Your biggest problems are probably malnourishment and bad diet so start there.

    Well, that's about it. I have been taking this stuff since Nov 10 but in the last few days, (around 2nd week of Dec.) I have eliminated most of them because I'm feeling too darn good. I'm kind of rotating some of them around and have reduced the dosage on all of them. They and my acupressurist, have really "jump started" my healing process and I just don't need them all anymore. I am definitely sticking with Teitelbaums' Daily Energy Enfusion, though, it's the best multivitamin I've ever used. And the Ambrotose, it makes me able to read more when the fog starts to bother me from reading too much. If I get to the point where I can "run" without crashing, I will consider myself "cured" and try to stop all supplements.

    Make sure you take care of the GI system, especially the liver. If you take alot of drugs, then take things that will protect the liver from them like NAC, SAMe and liver friendly herbs like milk thistle and dandelion. And if you have pain below your breasts and above your guts, get your gallbladder and pancreas checked. These can cause serious problems for the liver and the whole body.

    Most things I had been trying on and off, a few at a time, for a couple of years. Today is Dec 22 and I haven't felt this good since before I got sick. So we'll see what happens. I'm brain dead now, I'll have to check back and make sure I didn't leave anything out.

    good luck!

    karen

    almost forgot! My Ambrotose dosage, probably about 500mg - 1 gram per day depending on how yucky I feel or how much brain fog I have. Supposed to be good for detoxing, energy and immune system. It's a glyconutrient, really helpful stuff.

    Dec 26 I ran in the yard! (after the cat, short burst) Making serious headway, now.

    Jan 8 can pretty much leave the house and go to the store again. Can drive, walk around for at least 20 minutes at a time and can read all day. I've stopped most of the supplements, have just continued with the basic nutritional needs, Ambrotose, antioxidants, mito fuel, aminos, liver protection, electrolytes and a few adaptogenic and antiparasitic herbs I rotate around. It seems most of them have done their job and I am replenishing reserves and starting to really heal. Now I am working towards a raw food only diet.

    Feb 12 - I am seeing the acupressurist weekly and getting good results; yesterday, he and the rest of his team put on an all day mega-energy work session at the local spa. We were treated to all day hands on work: Reiki first, then yoga, acupressure, special spinal massage, qi gong, meditation and healthy meals. I have been feeling really good lately, but yesterday I was able to do most of the exercises, which would have given me a hearty crash even a month ago, and I got back a look in my eyes I have missed for the past 4 years. I had 4 people doing Reiki on me at once and something started to feel really "solid" inside. And now, when I look in the mirror, I see my old self again, finally. I had been seeing a tired, old version of me which had improved since Nov, but since yesterday I look like "me" again. Harry had put together the most energy producing and balancing techniques that he experienced in the past 20 years. The results are phenomenal. Today, not only have I not crashed, but I've already gone shopping to several stores and feel even more "normal" than I've been feeling. I have cut yet more of my supps lately.

    Here are some important articles. Most of this stuff is in the immunesupport library, but I found them before I got here and these are in my favorites:

    Cheney's protocol:
    http://membres.lycos.fr/chrisdel2/association/cheney/cheneyII3.html

    Teitelbaum's protocol:
    http://www.immunesupport.com/library/showarticle.cfm/ID/3346/T/CFIDS_FM/searchtext/teitelbaum%20protocol

    Cheney on low blood volume, heart palps, etc.
    http://cheneyoncfids.blogspot.com/2006/05/cardiomyopathy.html

    Heart Disease Secondary to Mitochondrial Malfunction: mito fuel article
    http://www.cfids-cab.org/MESA/DrMyhill-373.pdf

    Cheney's oxygen treatment,
    http://home.vicnet.net.au/~mecfs/general/oxygen.html

    March 1 - I rode my bike today for the first time in 4 years. It was only for about 5 minutes before my legs gave out, but I'm really happy about it. I have been inactive for so long, I'll need to start exercising slowly. That's the first time I've gotten my heart pumping and I didn't think I'd have a heart attack. I did feel kind of funny, though. I popped a couple of ribose pills and was fine in about 15 minutes. I had taken my other mito fuels about 30 minutes before.

    In April, I have increased the dosages of all methyl donors and B vitamins because of Rich's methylation protocol. This has definitely helped, even though I was steadily improving. They made me improve faster. I have been doing things I haven't been able to for 4 years. If you get to this point, be careful. The longer you've been ill, the more excited you become and it's very easy to overdo it before your body is adequately reconditioned.

    Enjoy the benefits and just do what you need, don't go overboard and start acting "normal" until you are certain that you are. Most of us have had our adrenal glands burned out and these can literally take months or even years to heal substantially. Just don't take up aerobics or jogging without being completely aware of your limits. Slow and easy wins the race, ESPECIALLY with this kickbutt disease.

    Okay, now it's the beginning of Sept and a lot has happened. I had started a supp called Coenzyme A back in March, which are really just precursors to Coenzyme A (very important metabolic substance in the body), and it was definitely something I needed. I take it every 4 hours and even in the middle of the night if I wake up. It really packs a punch and I've been taking it ever since. I wish I had started it along time ago, but it was pretty expensive and I was hesitant to try it. Turns out that it, along with the Country Life B Complex vitamin (bioactive forms of B vitamins which means they are ready for the body to use and don't have to be "converted" - anything which is easier on the body is good) are really giving me extra energy. I found that buying the ingredients of Coenzyme A separately can save some money if you don't have too much fog and can track them down. I also started dexamethasone in July, which is a low dose corticosteroid that is helping me with adrenal fatigue. It took about a week of feeling weird to finally normalize in my body, but it is working just great. Definitely helping me with hypoglycemia, carbohydrate metabolism and energy.

    After doing these coenzyme A, the bioactive Bs, the methylation protocol and the dexamethasone, I was feeling pretty darn good so I felt I was ready for human growth hormone. I had been reading up on it for 2 years and was waiting for the opportunity. So I'm lucky I'm in a place where I can get it, fairly cheap, and I have decided on my own dose: about 4 IUs per week to start, injections upon rising .1 mg and again before bed, in the outer thigh and abdomen with a diabetic U100 needle.

    I've been on it for about 11 days so far and it has already done wonders. If you use low doses, like 4-8 IUs per week, you are supposed to be below the doses that may produce some of the side effects. It's much too complex and detailed to go into here, there are tons of sites with info on hgh to look at. Cheney is treating patients with it. It is supposed to be able to heal CFS by healing all the different parts of the body that are damaged and causing it, including the hypothalamus - the body's hormone regulator (along with the pituitary). I predict I'll be back to normal within 6 months of hgh use. And from what I've read about it, I will probably use it indefinitely. I think this is the last of the treatment steps for me. I added some creatine just a couple of days ago and I can tell my body is responding favorably to it with a good feeling. It is responsible for cell hydration along with taurine and glutamine.

    I quit the creatine after a few days because I was becoming irritable. I'm still on the growth hormone, for about 6 weeks now, and I'm going to continue. My body is growing stronger gradually and steadily. I'm confident it's my ticket out of here. The trick is not to start being active just because you can. You still need to let the body repair. Don't do anything unless you need to.


    All right, that's it for now

    good luck everyone,

    karen

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  13. Mirandakay

    Mirandakay New Member

    Hi everyone,
    I haven't found anything that has made a dramatic difference but have found thing that help enough to make a difference.

    To help me sleep I take a magnesium, calcium, zinc combo. Also kolonipin and an over the counter sleep aide.

    I'm now taking sublingual B12 and cytomel for a suspected hypothyroid.

    I have a heating pad also that I love and a pain rub (like icy hot)
    I have also changed to non-toxic cleaning products and a high potent vitamin. I came across a company that sells non-toxic cleaning and bath and body products,etc. My website is www.luvinhealthyhomes.com. We do happen to be having a December special. You get $100 in free products if you join by the 18th.

    These are some of the thing that have helped me. Still looking for more things though.

    Tanya
  14. LongStruggle

    LongStruggle Guest

    What is Transfer Factor and where do you get it?
  15. LongStruggle

    LongStruggle Guest

    What is in Antiviral Valtrex and where do you get it?
  16. LongStruggle

    LongStruggle Guest

    What is in ambrotose and how can I obtain it or learn more about it? What exactly has it helped you with?
  17. LongStruggle

    LongStruggle Guest

    It is doubtful that this is currently my key problem as I have been seeing a chiropractor for years and lately my neck has been doing well. But, just in case I would like to have this doctors name, address, and phone # handy. Does he also have a website?
  18. Catseye

    Catseye New Member

    Ambrotose is a glyconutrient blend made by Mannatech. It's supposed to increase the ability of cells to communicate with each other. It's also supposed to help the immune system, give you energy and help you through detox symptoms. I can't tell about the immune system, I've only been taking it about 3 weeks or so, but it's definitely helping with energy and detox symptoms.

    It's relatively new and kind of expensive. I think you can only order it from Mannatech online. I ordered a little to try and then I ordered alot more. I'm glad I tried it, I almost didn't. I heard about it first at remedyfind.com.

    karen
  19. ummham

    ummham New Member

    Including massage therapy, physical therapy, and trigger-point injections, also just started on a high "meat" and protein diet, cutting out the breads and cheeses I usually live off of(I usually hate meat and don't eat it, but I am trying some suggestions from my new doctor who specializes in FMS)which surprisingly is helping with less inflamation. When I'm not "too" flared up I workout via treadmill or eleptical machine, to keep things loose and moving.I start the day with a hot bath or jacuzzi to get my body warmed up.
    I'm in pain daily, but if I keep up with the treatment I can work part time.
  20. luvumore

    luvumore New Member

    what is it??