Please share with the community things you believe have helped improve your health status or ability to cope.

Collectively, our discoveries and ideas, no matter how small, may ease the way for many others.

on Rich Van Konyenburg's methylation protocol probably made the most dramatic difference to my health. Finally got me back in the land of the living.

Otherwise Transfer Factor, Vit D, probiotics, green food drink, antioxidants, B12, and glutathione.



delia
[This Message was Edited on 04/17/2007]

I've been taking a million supplements a day for many many months now: Vit c magnesium b-complex dhea melatonin zinc vitamin d calcium vitamin e coq10 l-carnitine a powerful multivitamin with everything in it probiotics and turmeric for supposed candida

a million herbs: true licorice echinacea (2 weeks on, one off) goldenseal arnica gel for pain ginger for upset tum tum (Really does the trick for nausea) Milk thistle cod liver oil primrose oil Gingko (this just made me twitchy--it works by increasing blood flow which in turn is supposed to help the brain)

I'm probably forgetting something here.

I've also tried antidepressants (even though I'm not depressed), antianxiety meds, neurontin, fludrocortisone, prednisone, antivirals, and so on.

But the real kicker is the only stuff that actually helped me:

Magnesium--I'm low in this anyway (As are a lot of CFS sufferers)! But I really notice a difference if I don't take it. I take at least 1000mg over the course of the day and I'm still low. I'll up it and take more a little at a time.

D-ribose-- Take two teaspoons 3 times a day. Within a week my muscle pain was utterly gone, about 10-20% improvement in my overall health I'd say. I noticed when I stopped taking it.

B-vitamins

L-carnitine (you can eat meat to get this, so I no longer take the supplement)

I find that if I leave something out of those then I don't get as good of results. But with it all there I do really well.

Non-pharmacologial treatment that has helped:

Massage therapy helped a lot!

So did just sitting in an outdoor pool for a couple hours. It rid me of my blasted muscle pain. I think the water pressure helps my circulation. Jacuzzis just made me worse because they're too hot.

I read some really great stuff about cardiac/mitochondria malfunction. A lot of good research does if it doesn't have a practical application, but I took the supplements in it and I DO feel better. Nothing has ever done that. I have not gotten my life back, but I can maintain a status quo now without overdoing it. The link to research on cardiac malfunction British Dr. Myhill has a lot of great research on this in particular (too bad I live in the states).

Going to bed at about 10pm helps (I am bad at this) but when I do it, I feel a LOT better the next day. They say 1 hour of sleep before midnight is worth 2 after. I thought it was hooey, (I'm a night owl) but I tried it anyway because I wanted to get better so badly. It really helps a lot. Try it! Go to bed at 10pm and get up at 8am or earlier. Do it for a week and see if it helps at all.

DON'T LISTEN TO ANYONE WHO TELLS YOU EXERSIZE CAN CURE YOU! If the tests are right and it's a problem with metatbolism, you're only going to prolong your illness (ironic, huh?). Also, I tried all the easiest exersizes in the world, and it really wiped me out. I bet the same happens to most CFS sufferers.

I stretch every single day, and I consider that as much exersize as I can handle.

None of this may help you, but if it does, then I'll be very happy. It has not been wasted on me, I can tell you that right now! I went from lying in bed all day to being up more, and I can cook for myself more often, and get more done. I feel almost like a person. It's been so bad for me, I was delighted by the D-ribose! I could NOT believe how well that stuff worked once I took the right amount, even though it's not a cure, any little improvement was worth it. And it tastes great!

Well, best of luck to all of you, keep up the good fight!

The first thing I did was to begin eliminating things that are horrible for me. I got rid of my non-stick pans, quit aspartame products, cut down my Pepsi habit to less than one a day, quit smoking, and even found toothpaste without flouride. I also stopped buying and eating crappy chemical/processed foods.

Then when I started to see things more clearly, I started supplements from here at Pro Health.

Began with the amazing Fibro Multi with Malic Acid and felt a small kick the first day I tried it. (Wonderful stuff)

I've moved on to Probiotics, Sublingual B-12, Astragalus, Green Tea, Glucosamine, Coenzyme Q10 and a few others. Also learned about the wonders of a balanced magnesium/calcium/zinc supplement here too, so my muscle pain has almost disappeared.

I'm eating better than I ever have after learning more about nutrition on this board. Lots of fresh fruits and veggies.

So I've moved up on the scale from a 0-10 to about 30-40 on the good days. That's a major improvement for me.

Hugs,

Nancy B

I eliminated gluten and other food allergens, added healthy fats and treated for candida and toxins. I didn't use any supplements, just natural herbs and foods.

I have improved a great deal in the last year. I can walk completely normal all of the time now whereas before my legs would feel heavy if I had to walk any distance.

I can sleep normally now too without any meds. I had insomnia and myoclonus (seizures). And I am no longer hyper or having adrenaline rushes.

I am still getting more tired than I would like, but I have been on the go and mostly out of town for the last 6 weeks so some fatigue is to be expected. And I am dealing with hypoglycemia issues.

Good luck with all of this ... xchocoholic

I've tried many things over the years. A few things stand out. For my digestive system, going off of my allergy foods helped a lot. Ultra Clear Sustain has helped better than anything else I've taken for it. For infections, zinc and a good multivitamin help the best. Whenever I start getting a flare-up or the flu, I just increase my zinc. Eating 4 small meals a day, plus snacks helps the hypoglycemia. And for coping, I found that balancing my health works best. I used to listen to those who think all my troubles would be solved if only I could sleep normal hours, or just "try harder". I destroyed my health multiple times. My health is far more stable when I listen to my body instead.

1. My heating pad is my best friend. 2. Taking breakthrough meds before the pain gets too bad. 3.Learning to say no. 4. Asking for help. 5. Try to get out at least every other day so I don't get too into myself. 6. Try and get dressed every day. 7. Keeping reg. hours and lie down for a nap for only 1 hr. hope that helps someone. Cath

Great thread..Thanks for starting this!!

Things that helped me...(I have CFS/FMS)

Myofacsial (SP?) massage, combined with physical therapy for my Fibro.

Streching/everyday, 2-3 times

Heat on my sore parts!/also HOT showers

A good mulitvitamin (from Life Extentions)

Probiotics (by Garden of LIfe)

A Calcium, Magnesium and Vit D Supplement (Bone Restore by Life Extentions)

Having 'quiet time'

doing word games on the net (to help stimulate my brain)

MOST important, getting at least 8 hours of sleep a night. I take a xanax before bed, Does wonders for me!!

Walking, mild excersice when I can!

Eating a healthy diet!!! Helps me for sure!

I was bedridden for over 2 years, and have come a long way!! I have also found this board to be VERY helpful.

Thanks Friends!

CHEERS! DOVE

Hello there Stormsky.

Can you please tell me what the 'shake' is that you are taking that helped your depression and hair loss???? These are 2 things that I could use help with thanks!!

Thanks all for your wonderful tips!

DOVE :)

Basically. Organic Diet, no carbs, no gluten, no sugar , no tea coffee, no dairy, LOTS of veges, vege juice, no allergic foods probiotics lotsof vits, minerals weekly B 12 and B injections heavy metal detox with DMSA reduce chemical exposure, no perfume, no chemicals in house cobie

I need to try harder to remember to do all this, as I feel so much better when I can keep up! - An understanding compassionate doctor - Having regular appointments with a psychotherapist with experience in working with people with chronic disease - Swimming, floating, being in water, aquatherapy - hot baths at night, for sleep and pain - Cymbalta: a newer antidepressant developed for neuropathy but works well for fibro folk as well. It is both an SSRI and SNRI. Took about 3 months to fully work, but I saw steady improvement from the beginning (I have been on other SSRIs for about 8years, this one really makes a difference) - having a designated nap time that is SACRED every day - pacing myself - distraction when there is not a lot I can do about my state, instead of moping and making things worse - having pets (dogs, cat, turtle) - being on a good regimin of vitamins and supplements - particularly multivit, malic acid, enzymes - going organic, and reducing exposure to chemicals - improving comfort of bed (time to do this again) - no watching TV or reading right before bedtime - using a heating pad with massage feature - going to a pain specialist - relaxation techniques - being good to myself - forgiving, understanding, not being too critical, giving myself a break, going over the good things I CAN do - I need to do a better job of keeping up with other people. This is really hard for me, but I need to try - getting sunshine, using a full spectrum light, tanning occasionally - removing myself from toxic people and situations (need to work on this one too - it is critical for well being!!) - Using lydocaine patches (a topical anesthetic) on particularly painful spots at bedtime. It is not a quick fix, but by morning, the pain is usually reduced or gone - eating meals and snacks throughout the day - not skipping meals - posting lists and signs for myself to help with memory and remind me to be careful, slow down, etc. - doing a TON of research on my DDs - sending subscriptions of FMS/CFIDS newsletters to people who try hard and care but are somewhat misguided in their attempts to be helpful (parents, etc.) - limiting stimulus (noise, light, etc. and removing myself quickly when it gets to be too much o I don't freak out and sob or yell) - seeking out and accepting as much help as possible!!!!

I need to try harder to remember to do all this, as I feel so much better when I can keep up! - An understanding compassionate doctor - Having regular appointments with a psychotherapist with experience in working with people with chronic disease - Swimming, floating, being in water, aquatherapy - hot baths at night, for sleep and pain - Cymbalta: a newer antidepressant developed for neuropathy but works well for fibro folk as well. It is both an SSRI and SNRI. Took about 3 months to fully work, but I saw steady improvement from the beginning (I have been on other SSRIs for about 8years, this one really makes a difference) - having a designated nap time that is SACRED every day - pacing myself - distraction when there is not a lot I can do about my state, instead of moping and making things worse - having pets (dogs, cat, turtle) - being on a good regimin of vitamins and supplements - particularly multivit, malic acid, enzymes - going organic, and reducing exposure to chemicals - improving comfort of bed (time to do this again) - no watching TV or reading right before bedtime - using a heating pad with massage feature - going to a pain specialist - relaxation techniques - being good to myself - forgiving, understanding, not being too critical, giving myself a break, going over the good things I CAN do - I need to do a better job of keeping up with other people. This is really hard for me, but I need to try - getting sunshine, using a full spectrum light, tanning occasionally - removing myself from toxic people and situations (need to work on this one too - it is critical for well being!!) - Using lydocaine patches (a topical anesthetic) on particularly painful spots at bedtime. It is not a quick fix, but by morning, the pain is usually reduced or gone - eating meals and snacks throughout the day - not skipping meals - posting lists and signs for myself to help with memory and remind me to be careful, slow down, etc. - doing a TON of research on my DDs - sending subscriptions of FMS/CFIDS newsletters to people who try hard and care but are somewhat misguided in their attempts to be helpful (parents, etc.) - limiting stimulus (noise, light, etc. and removing myself quickly when it gets to be too much o I don't freak out and sob or yell) - seeking out and accepting as much help as possible!!!!

what is transfer factor?

I have been dealing with FMS for approximately 40 years -

1. As a young woman I cried a LOT and tried to outrun the pain. I was so confused. I tried various RX's - nothing worked. I "burned out" in 1994 and was RX'd an anti-depressant and rest for over a year. I rested a great deal. Daily walks but gently. THEN I began to make the changes I now try to incorporate into my life. It's a daily challenge.

- Good diet

- Gentle Exercise: Pilates, Swimming, Walking. I also am a registered nurse and work part-time so walk a lot at work.

- I take a sedative at bedtime now to ensure a good night's sleep. I function very well as long as I get my rest.

- I write and paint - and this puts me into a "space" where I feel no pain.

- Meditation and self-hypnosis techniques also have helped.

- I do not FIGHT the pain anymore. When I flare I try to go with it. I shower - hot water helps.

- I try to make good decisions that will not stress me. When stress enters my life I try to detatch.

- I am now 55 years old, semi-retired and will devote the forseeable future to a project that will hopefully help others help themselves. It can be viewed at www.shandarrah.com.

Right now I'm in a relapse with a bad cold following the news that one of my closest long term friends' lymphoma is back and the cure this time with chemo is less certain than before. Really tells me that stress is the great leveler, but, these things have all helped, as overall I'm better than when CFIDS started:

probiotics healthy diet with no sugars, sodas, cheese, etc. I chose the Zone diet and have slept better and my cholesterol, which had been out of whack for a year reversed itself omega 3 lose dose of Q10 focus on something creative, ie I write and publish poetry, even though I have to pace myself and do it only as I feel up to it. Am also VERY slowly cowriting a book with a healthy friend. klonipin..I realize the debate about this class of meds, but until my doctor tried this, I shook when exposed to sound, visual stimulation, noise, conversation, etc. It enabled me to function again, so I'm grateful ginkgo-stopped the pain in my ears that hit when the tinnitis started. St John's Wort..stopped the morning emotional lows that started with CFIDS and also gave me more clarity supportive doctor chiropractic help being quiet after around 8 and going to bed by 10 leading a quiet life (no, not my first choice)

I'm sure I've forgotten things. I want to look more into the tranfer factor since a number of people have mentioned that.

I have been using Nature's Sunshine , probiotics, a multivitamin, DHEA, Olive leaf extract and Pro Boost, this helps my weekend immune system. And no refined sugars or bad carbohydrates, helps with yeast overgrowth. The predisone and antibiotics can cause yeast overgrowth and fungal overgrowth. I also have found a good endocrinologist who is treating my Hypothyroidism properly. NO pain, unless I am sick then the Fibro will flare.


[This Message was Edited on 10/25/2006]
[This Message was Edited on 11/05/2006]
[This Message was Edited on 10/13/2007]
[This Message was Edited on 10/13/2007]

Morning: NADA Paxil Advil

During the day: Fibro-Response by Source Naturals Women's Exclusive Formula by Vitamin World

At night: Ambien CR Lyrica Flexeril

And MOST IMPORTANTLY I make sure to exercise or do yoga EVERY DAY! I can feel the difference when I don't. Even if it is just for 5 mins ... It keeps me in the habit and makes me feel better.

First the lifestyle stuff,

EFT / Emotional Freedom Technique www.emofree.com This technique is amazing, initially my rational mind couldn't understand it, but I tried it out on a number of day to day and then more deeper issues and found it helpful. Free to learn and you get helpful email updates. Also Carol Look and Dr Carrington's adaptions are easy to use.

Some good friends, either chatroom / internet or real life, I've been lucky to find some real support and friendship through these.

Laughter, funny films or tv series are cheap and easy to get on dvd, Friends, Frazier, Jackass, whatever makes you laugh : )

Powerful daylight desk lamp, helps me concentrate especially in the winter.

Relaxation tapes, I use the ones by Gill Edwards from www.livingmagically.co.uk , but you need to find ones with a voice that you get along with.

Religeous / Spiritual beliefs. I practise Soka Gakkai Buddhism as I find the chanting useful, but whatever your denomination, a broader dimention to life can help.

Sauna / Steamroom, together with drinking a lot of water this is like a mini detox, only go when I've got the energy though.

Increased water intake, either filtered water, fruit juices, herbal teas, or just a mug of warm water. Even slight dehydration makes symptoms worse.

My chiropractor has been the biggest help. Along with regular treatments he started me on DSF, an adrenal supplement with vitamins. The DSF also eliminated about 90% of the RLS.

A few month ago I began to eat differently. I have a proper amount of protein and complex carb for breakfast. I am now able to complete thoughts and sentences where I used to just lose myself in the middle.

The sinatra protocol made a big difference

L Carnitine Alpha Lipoic Acid Co enzyme Q10 D Ribose Magnesium Vit B3 http://www.drmyhill.co.uk/article.cfm?id=373

If you search around these supplements are not too expensive, the only difficult one is the D Ribose which is more of a body building one.

Fats - Lecithin and Vit B 15, also Evening Primrose oil or a Fish oil, or a blended oil mix. Your cell membranes are oil based, your body needs fats and oils.

Adrenal Support - Siberian Ginseng or Rhodiola both help combat fatigue.

Strong time release B vitamin, again helps with fatigue and relaxation.

Chlorella, taken at night helps your body's natural de tox. Absorbs loads of rubbish. Take extra water when using.

Juicing. I bought a Matstone / auger juicer and have about a liter of carrot and apple juice each day. Juice is much easier to digest than all that raw fruit.

Extra fluid. Filtered water, fruit juice, herbal teas all help.
[This Message was Edited on 10/25/2006]

I was diagnosed in 2004. I am 39 and was given this DD as a reaction to the Influenza Vaccine. I am better than initally ,but how do you know when you are as good as you can get? Each day: Elavil- side effect to tell my brain I don't hurt. (helps some) Darvocet-I will not let myself have more than two per day. (habit forming) Break through pain I suffer through or take ^ motrin to make it. High Energy Multi Vitamin - if not for Vitamins I would be in the bed 24/7 with ^ pain and fibro fog. Sublingual or liguid vitamin B. When i keep up with taking all the pills I take Magnesium,fiber,Omega 3,melatonin,more vitamin B

I tried Cymbalta and almost died. It made my heart rate and blood pressure go crazy. Ambien really help me ,but you can't get a doctor here to keep prescribing it. I would take half a pill and it would give me some restful sleep. I have taken melatonin too. I go to bed at 9 pm and get up at 7 but to my body i need at least one or two more hours sleep. Coping: I treat this DD as if it is a part of my body and tell it when the pain is really bad that its not gonna beat me. I have a child to raise and I must keep going.


















[This Message was Edited on 10/25/2006]

Besides all the supplements, many already mentioned, plus

juicing and no sugar I do REIKI. ths has made a huge

difference in my life. I am a Reiki 1 practitioner and

will become Reiki 2 this weekend. I do it on myself everyday

and get a tx once a week at a clinic (donation basis).

Reiki basically is hands on healing but what it does is

keeps things moving which is what we need with CFS and

fibroso we don't get stuck! Wonderful for pain so it has

cut down my pain meds and helps sleep.

I was lucky enough to find a doctor who understood that the key to Fibromyalgia is the Thyroid...and what a difference Armour Thyroid has made in my life...no more pain when the levels are high enough!!!

Along w/the Thyroid...I have through major research...learned that the supplements for muscle therapy are a necessary addition to my regime. L-Glutamine, L-Glucosamine, Creatine. Then there is the addition of Malic Acid and Bromelain. Using ReVivex..Celedrin helps w/the pain. A littel White Willow works too, and you don't have as much of an interaction w/the thryoid as you do w/aspirin.

GABA is absolutly critical for the chemical balance in the brain! Not just one a day either...you have to take enough to do the trick...and in time your body will learn what that is.

Add Protein to the mix and wala there you have it...no pain and I can do just about anything I want!

As I said the Key here is the Thyroid and when that level is low...well then nothing else will do the trick...you have to control the pain w/the Armour Thyroid...high levels generally to fix it...gradually increased of course!

Good luck in finding the Doc who will understand...most are afraid of the Thyroid...too bad...

As a Dr. of Holistic heath myself the journey has been very interesting indeed...I suppose w/out the stresses in today's world we wouldn't be talking about Fibromyalgia at all now would we???

The one single product that has helped me the most is called "Ambrotose" from Mannatech. Until I started taking it, I had been bed-ridden for two years with CFS. After about four months of taking Ambrotose, I was able to get up and be out of the house for short periods of time. I'm now working part-time again.

I still tire easily and sometimes have to use my wheelchair to get around the grocery store, but the improvement has been amazing.

Here's what is working for me...

First thing is to prioritize; make getting healthy your full-time job. Take control. Read everything you can find in the hopes that some of it will help, but realize that you have to figure out for yourself what works for you. Every body is different, with different symptoms and different needs.

Bank your energy. Each morning, figure out how much energy you have and what you could do with it, then do only half of that and bank the other half of your energy. It takes energy to heal, and if you spend it all, you won't have any left for healing. Rest as much as possible; if you are doing anything else (talking, knitting, anything) you are not resting!

Eliminate toxins from your food, water, air, and skin care. Supplement your diet with vitamins, minerals, herbs; once more, you have to let your body tell you what it needs. You must listen carefully; it will tell you.

When you are able, get gentle exercise such as yoga, walking, or tai chi. Do this little by little; treat yourself gently. If it hurts, don't do it, but try again later. Push the envelope, but only gently.

Eliminate stress as much as possible. Find supportive, not toxic, people to be around. Lower your standards and expectations as to what needs to be done. It won't kill you not to have a floor clean enough to eat off of; how often do you eat off your floor anyway? Prioritize your energy, delegate tasks if someone else can do them, don't do what doesn't need doing. Save your energy for healing, rest when you need to.

I could not even begin to list all of the things that I have tried during my 16 years of dealing with this disease. A couple of years ago, I counted all of the supplements that I have tried . . . just the supplements . . and I counted more than 200! I have tried all kinds of exercise routines, therapy treatments, and spiritual endevors.

So far, the one thing that has been the most helpful is getting all of my allergies checked.

Eliminating the high allergy foods from my diet made a big difference.

I also take probiotics and enzymes to assist digestion.

I have also tried many supplements over 25 years. I have finally reached a plateau in which I am pretty comfortable. I take Effexor XR in the a.m., Omega Oil capsule, and a multi-vitamin. In the evening I take Calcium with Vitamin D, Nexium and Mobic. At bedtime I take a very small dose of clonazepam and trazadone for sleep. If I am suffering from a lot of pain, I take 8-hour Tylenol every 12 hours. This sounds like a lot of medication but it balances my body system. I credit the fish oil capsules with a great improvement--plus it makes the skin soft and clear! I find that sitting too long in one position makes pain worse as well as standing on hard surfaces for an extended time. I don't get much exercise as I find it makes me so sore that I cannot function for 2-3 days. I stretch some. I try to get out with my friends on a weekly or bi-weekly basis. I immerse myself in painting which takes my mind off the pain. I find that when I get a mild viral infection, it exacerbates my pain greatly. For this reason I try to head off infections. I try to get at least 8-9 hours of sleep each night, and I try to avoid too much sugar,drink a lot of fluids and avoid caffeine. Sorry if this is too long. I am just anxious to help those who are searching.

I have been on and off the boards since about 2000. I came back this past year after an almost 2 year remission with FMS/MPS. This is what has worked to help me improve my health and decrease my flares.

1. Healthy eating: eliminating the majority of processed foods, less sugar, reducing caffeine, no soda, I eat at least several servings of veggies/fruits daily and have added healthy grain cereals/breads.

2. Daily excercise. I know this is a hard one, but I have found that 30-45 minutes of Yoga helps my muscles stay limber, flexible, less myofascial pian. Deep breathing helps with the cardiovasular system as well.

3. Supplements: I currently take, multi Vitamin, High complex B, 200 Vit E, Flax/Borage oil 1000mg capsule, Probiotic capsule 2x daily, Calcium w Vitamin D 1000mg of calcium, 300IU vit D. Magnesium 500 mg daily at bedtime to relax muscles and milk thistle to keep liver clean.

4. Drinking water and herbal teas...I drink teas year round, usually passion flower, valerian, chamomile with honey in it. I avergae about 6 cups a day. Very helpful at bedtime.

5. Regular sleep schedule: Try to go to bed at same time to maintain circadian rythm.

6. Limit use of otc's/ prescriptions as they have not helped me and I am concerned about effects on liver and kidneys, carodiovascular system. Use meds when flare won't let up, until I see the chiroparactor.

7. Body work by a chiroprator trained in Myofascial Pain release techniques to work ot the trigger points. I see him biweekly or when feeling as though the knots are starting to become worse. Chiro/body work so far has been a lifesaver not only for my lower back problems, but having the trigger points worked on regularly has decreased my overall pain.

8. Prayer...Lots of it for myself and others as well.

9. Keeping mind busy on other things than my pain...

10. Not fighting with my pain, trying to understand what it is telling me, dialoguing with my pain to gain insight and decrease it. Pacing self. 11.Warm showers or baths before bed or after yoga or when stressed to loosen up the tight muscles and decrease pain.

May sound simple but takes daily discipline on my part to do.

Hope this is helpful for those of you out there that need hope and coping ideas. We all find our way through this, but having support from others that understand is crucial.

In wellness,

Suz45
[This Message was Edited on 10/25/2006]
[This Message was Edited on 10/26/2006]

Several years ago, what got me out of bed after 4 months was antiviral valtrex. I read an article that different antivirals should be tried, because it isnt a one antiviral fits all for all viruses. Some respond to this antiviral, others respond to that antiviral. I noticed a diffence in three days. The first two days was some side effect, but it went away quickly for me.

Another thing that helps with brain fog is staying away from milk protiens. Also helps with some achiness that feels like it is in the bones.

When my muscles feel like they want to cramp easily when stretching or yawining half a tablet of potassium takes care of it.

I just heard a story from some older lady who doesnt have CFS, but was strangley tired and weak for a few years, she finally figured out it was a supplement she was taking--she takes quite a few different kinds. Now she quit the supplement and feels better. It was so me sort of b-12 supplement with yeast in it. Good lesson to be learned from her, to take one supplement at a time then add another one and find out if any make you feel worse.

Hope any of this may help, God bless
[This Message was Edited on 10/25/2006]

I, too, have tried years of western medicine, MDs, prayers, time, balms, patches, magnets, acupuncture (everything short of "vudism". I think your suggestion of the natural products you recommend is excellent. I have tried MSM, Cal., Mag, Guafensin, etc. I'm convinced the root of our problem is "leaky gut" and probiotics and seaweed/and or salt is our salvation. I good liver detox. (dandelion and milk thistle) sounds like the recipe. I'm trying it!! thanks so much. GLO

PS -- sounds like you've had the "affliction" for some time. please reply.

The only thing that has worked for me after 3 years of many days and dollars spent is IVMT (IV Micronutrient Therapy). I receive a weekly injection of vitamions & minerals (Magnesium, Calcium, Vitamin C etc. and it immediately clears my brain fog and for the remainder of the week I can do about 80% of what the old me could do.

If I skip a week - I fall back quickly and then it takes a few weeks to return to 80%.

When you get the injection, it feels like a warm blanket has been thrown over you! It's $75 a shot but I highly recommend.

Only thing that has really made a difference is Lyrica. With a gradual increase in dose over a couple of months, almost all my FM pain is gone! I can move and function so much better. Other helps include massage, elimination of stress, and a wonderful loving and supportive husband (and my two siberian huskies). Unfortunately, prior drugs created other permanent problems so I'm still not working nor will I ever be able to again. Seeing a psychologist has helped me accept my life and reduce my self-imposed stress. Now starts another round of physical therapy to try and get the muscles strong and moving again.

I agree with the thyroid and adrenal correlations along with going "natural" with foods. They also help in their own way. Discovering I had not only sleep apnea but REM sleep disorder has made sleeping a wonderful thing.

Wonderful thread - thanks....

This injection does not work for all people. My first and only injection almost killed me. I remember my blood boiling and pressure dropping rapidly. I had all nurses and doctors surrounding me and the head Dr. there with an adrenal syringe. Scaring thought looking at that syringe. I was a rare exception - granted - but just start slow and be aware of everything happening to you. Stop the IV if you have any doubts.
[This Message was Edited on 10/25/2006]

I have had about 50 IVMT injections in the last year and half at the Yale Integrative Med Center at Griffin Hospital in Derby CT under the care of Dr. David Katz. I hate needles and have never had any issue with these injections which take about 10 minutes to do.

One thing they do before starting is a skin test for Thiamin reaction - I was positive so I receive a non-Thiamin (Vitamin B6?) version. I don't know if that may have affected the prior writer but make sure your clinic or doc looks at this before trying IVMT.
[This Message was Edited on 10/25/2006]

I suffered for 3 years with CFS and FMS and after years of all kinds of drugs and natural remedies the only thing that worked for me was meeting Dr. Dan Heffez a neurosurgeon from Chicago. He was featured on the program 20/20 and seemed so knowledgeable and understanding of the symptoms that I listened intently to him speak. He suggested that most people with CFS and FMS usually have structural problems in their neck area causing the spinal fluid to be interupted and that he finds that once diagnosed properly surgery does help to relieve the constricted areas. He made so much sense that I contacted his office and forwarded him my "normal" MRI reports of the head and neck. Upon review he called me and told me that my MRIs were NOT normal and that I did have a constriction (called a Chiari Malformation" ) in my neck, even though me neck didn't hurt me too much he saw that this was the area where I had a problem. I flew to Chicago and went through two days of intent testing and he and a team of doctors verified that I was a good canidate for "decompression surgery". Two weeks after my surgery, my symptoms began to go away. I am 5 years out from the surgery and have my total life back again. I take NO pills any more. Just good viatmins and the acai berry drink. I sleep like a baby, have no more pain and burning limbs, lethargy, eye floaters, off-balance, headaches, IBS, confusion, etc. I owe my life to Dr. Heffez and would love to give anyone info on how to get in touch with this wonderful man. I have sent about 20 FM sufferers to him and he has helped them all. If you haven't gone this route and are desperate for your life back like I was, please contact me at [email address removed as per rules]. If I can help anyone to stop suffering, it would be my pleasure!

Along with Fibromyalgia, I suffer with depression. The SSRI's are commonly prescibed but with them can come big time sexual side effects, loss of libido.

My doctor prescribed Requip for this which is an off lable use of a drug approved for Parkinson disease and Restless Leg syndrome. I take just 1mg a day and have had complete success with it for 1 1/2 yrs now. I have no noticable side effects either.
[This Message was Edited on 10/25/2006]

I'm not really familiar with Transfer Factors but you can either do a search for them using the search feature, or go to the Pro Health Store here and learn about them there.

Sorry I couldn't help more...

Nancy B

Thank You Stormskye!!!

I am going to try that, and when I do. I will let you know..Funny thing is; I just bought a good blender this week, and have been making yummy fruit shakes, as well as salads in there too!

Thanks again! Hugs Dove

i have been struggling with CFS for 11+ years. i read about transfer factor and something else that helped you (i have already forgotten what i wanted to ask you). well, i remembered transfer factor. what is it, what did it do for you and how do you get it? what form does it come in and what is the cost? and please tell me about the other things that helped you that i can't remember from your message. i have to adhere to a whole food diet or all my symptoms come crashing down on me again. i still can't get back normal energy levels so that i can hold a job. even though aderrall has helped greatly, it does not help enough to allow me to rely on enough energy to work. any other thoughts? i have come along way from bedridden to almost no naps but i am far from normal. i am all ears. thank you.

I have nothing dramatic to share-- I've tried a lot of different things-- still searching and experimenting. Anyway, all of these posts are interesting and thanks for sharing. This is just a small way that I deal with a lot of guilt feelings and bad cases of "poor me".

When I am stuck in a flare, or if I'm just stuck in my own head, I tend to get very hard on myself about all I am not able to do. I have found that if I am able to make a list of all the things I have done to contribute to the functioning and well-being of myself and my family, it really adds up to much more than I would have ever guessed. I give this list to my husband so that he can see that I haven't "abandoned" him to cope with everything on his own, but that my heart and mind are always working, even if my body can't. He really appreciates these "reports" as well.

I add every single thing, whether it's "got dressed" or "reviewed problem with daughter's teacher" or "shopped online for Christmas presents" or "read article on CFS, made notes to ask doctor" or "designed dress in sketchbook to keep creative juices flowing". This list makes both of us feel that I am still part of the team, and that I haven't given up. If I were single, I would still do this, and it would seem almost even more important to do so, since I wouldn't have anyone recognizing my efforts except for me. (Not that my dh and kids are constantly doing this... :)

I suppose this is one for the coping corner, and I doubt I am the only one to suggest this, but I didn't have anything to offer that has "worked" for me longterm, as well as this. From a physiological standpoint, I think making a list is something that requires the left side of the brain to function, and the more that is stimulated, the better we feel. I read an article about this a while back. It's like, if we do things, but don't acknowledge having done them with our left brain, it feels the same as if we hadn't done it at all. For instance, if I design in my sketchbook, that's a right-brain activity, and that is fun and feels good while I'm doing it. But the recognition of it with the left-brain-- by mentioning it out loud or writing it down-- is what makes the feeling of accomplishment and well-being last. Hope that all makes sense!

I think writing down "what works for me" is a very good left-brain activity for all of us, and probably makes us realize how very hard we've worked and how far we've come.

Lisette

Enjoying reading here what helps everyone, but if you don't mind, could you or someone else explain to me what transfer factor is? The "fog" is one of my worse problems. Thanks. Toots

FybroResponse vitamins.

I WANT TO TELL THE WHOLE WORLD

Valen Labs and Dr. J. Teitelbaum as he has discovered that ribose (a sugar) irridicates pain in almost 70% of cases. This has been true for me:

RIBOSE, 5 mg, 1-3TIMES DAILY with food has saved my life. I am 50 to 75% better in terms of pain. Naps have decreased.

There has been a slight downfall with it in my case. You may be able to avoid it. I am very petite at 5'2", 112 lbs. It can cause hypoglycemia, anxiety, and panic attacks if taken at too large of a dose per body weight. It should be taken with a high carb meal.

I saw a drastic change in my life in 3 weeks. Now I can take long walks, clean the kitchen floor, type longer, wash my hair without pain, prepare a large meal, drive longer, avoid long naps, etc.

The latest news is very sad, as of 10/27/06 pm, I have decided that the hypoglycemia episodes are more than I can handle and I'm going to give this a break. Maybe I will try it again later...and I highly recommend it for an individual who does not suffer with a low body weight or hypoglycemia. It may even help you to loose weight. I hope that I just helped somebody because it felt like I was living in Disney World (being pain free).

baanders
[This Message was Edited on 10/27/2006]
[This Message was Edited on 10/27/2006]
[This Message was Edited on 10/24/2007]

CFS and Fibro cost me a very good job and career in my early 50's, went on LTD and eventually onto Social Security Disability and Medicare, which were lifesavers. Because I always embraced job and life with gusto, getting so sick was devasatating. I have been dealing with these challenges for 17+ years. The one thing which has sustained me through the wild roller coaster ride, the highs and lows of energy, pain, sleeplessness, loss of much social life, et al...is..putting as much energy as possible into finding solutions.....widely networking with other PWC's, reading everything published on our illness and being teachable about experimenting with what I used to think were pretty far out protocols....esp. outside mainstream medecine. A few of the highlights:

Went to the Optimum Health Institue in San Diego for three weeks and totally cleansed the body with vegan , wheat grass, colonics, massage, etc.

Finding excellent Allergy/Immunology Doc and reduce the allergy load, do 4 day rotation diets and to this day, still do Antigen injections. This gave me first breakthrough to more energy and better health. Maintaing healthy diet is critical.....no alcohol, caffeine, low sugar, modest grains, etc. This same doc got me started on a special kind of Transfer FActor, a liquid human blood product (from people with carefully screened strongest immune system). I still use as an injectable twice a week...paid so far by Medicare.

Findd the best Thyroid doctors and get right meds....Synthroid and Cytomel for me. It raisedd body temp one full degree, cut chills, and helped restore Adrenal burnout. GEt checked three times a year.

Worth mentioning that two products which have helped many PWC.s.....IVIG (Intravenous Gamma Globulin) and all forms of anti depressants have not worked for me at all. I am hypersensitive to wide range of medications, and the side effects make me even sicker. So this really pushed to work with Naturopaths and alternative healers.

In addition to treating the allergies and thyroid/adrenals, one of the most important symptoms to treat is the major sleep disorder. Klonopin worked best of all for 8 years, and then I experimented with less habit forming meds and herbs. The herbs help but I need a potent kick to sleep properly. TRied 7 meds. Neurontin, AmbienCR, Lunesta, Rozorem, Gabitril, trazodone,etc. Bad side effects, heavily sedated all day.....so happily back on Klonopin. In addition to now needing less sleep and awaking somewhat refreshed, my fibro goes down with proper sleep.

I find very little male company for this illness, so helped start a six people support group....me and five lovely ladies . To this day, ssome of us stay in close touch and share breakthrough info. Also important to have understanding allies while many of our families and friends do not cut us much slack. Rich's Bulletin Board creation is such a great idea like this.

ONe major improvement came for me being very involved with a Naturopathic doc with European training ....for past four years. Using daily liquid herbal extracts, etc. It has helped with more energy, calming nervous system, more mental clarity. It has put me in the poor house, but I have at least half a life, modest social life, a small used book business selling on internet and loving it. ONe of his effective products not so expensive is Shark Cartilege Powder which truly reduces worst Fibro....and some arthritis. And fish oil, vit. C and garlic daily to keep away most colds, infections.

Your "posts" are so informative and encouraging. THanks to all of you. I will get back on Probiotics, maybe try Pro Health's Transfer Factor. and Massages. Last thought. Stretching is critical for me to reduce fibro and walking and light swimming help immeasurably.

Keep the faith ....and remain teachable.

Paul M.

This is what keeps me going!

Ultra Inflamax (drink mix 1 x each day in the morning) Musinex DM ( 1 each morning) Aleve(1 twice a day) Vitamin D (once a week) Omega 3 Magnesium, Calcium, Potassium (every night) Bio Identical Hormones (night)

Frequency Specific Micro Current once a month

Ionic Foot Bath 2 times a week for 2 weeks then once a month

Alpha Spa - once a week

Quit all sugar substitutes...NO Diet POP... no prepackaged foods.

eat more fresh vegies and fruit.

Drink more water

This has taken me for horrible pain, fatigue and brain fog to feeling like I'm actually ...almost a normal human being.

I forgot the two things that have helped me the most. Novacaine shots wherever it hurts and High dose magnesium, vit c and b IV's once a month. Kayleen

1. stretching daily, beginning upon awakening and before getting out of bed. 2. heating pad 3. warm, not hot, baths 4. mirapex, a parkinson's drug. this has helped tremendously the aches and pains 5. evening primrose oil 6. OPC3 for stamina 7. ambien & zanaflex for sleep 8. zyflamend pm for sleep 9. avoid allergens & irritants. change pillowcase daily

all the above is for fibro for an epstein barr flare i add 1. morinda capsules, noni juice or mangosteen juice 2. thim j capsules 3. a prescription anti viral

thanks for the great topic!

this is a GREAT idea! thanks.

Hi, Gang!

I'll share what has helped me the most with specific symptoms, but please keep reading for the real thing that gave me my life back.

Nature's Sunshine Chromium GTF (no other brand worked) - gave my muscles the energy to get through the day after feeling like each limb weighed more than 100 lbs - also helped greatly with severe hypoglycemia

Standard Process Magnesium Lactate (no other brand OR form of magnesium worked) - gave me great relief from the anxiety and emotional roller coaster, plus helped me to sleep better and more

Nature's Sunshine Vitamin B6 (again, no other brand worked for me) - rid me of my constant palpitations and arrhythmias, and even "cured" me of mitral valve prolapse

Brain fog has been helped tremendously by a few things - not sure which had the most effect: The Lecithin from Lewis Labs, L-Tyrosine, L-Phenylalanine, and I recently began using Ultimate Brain Support by Real Advantage Nutrients.

Energy has been improved to varying degrees by a few different things. One recent thing is Taurox SB drops - these help the fatigue by balancing an overactive immune system. (I tried the NADH mentioned by someone above, but if your cells are "too open" like mine, this will act like caffeine and you'll end up wired and shaky and weak and more exhausted.) Rhodiola Energy by Enzymatic Therapies is something I'm experimenting with and I'm cautiously optimistic.

There is a whole list of other supplements I could name here, but I'd rather tell you what will work for everyone, regardless of symptoms or causes. (Notice I didn't say "cure" - everyone will see big improvement from this program, but it's up to individuals to remain long-term vigilant to make it work.)

Metabolic Typing Program. WAIT! Before you say "I read the book, took the test, did the diet, and didn't feel any better," let me explain that I'm talking about doing the comprehensive testing and working with a specially trained counselor. After losing 2 careers, and being almost bedridden for 2 years plus horrible trouble for a year before and after, and struggling since age 3 with this hideous dysautonomia, I finally have a full life again. Perfect? No. But my bad days now are fewer and much better than my good days ever used to be. And I have a strong suspicion that if time and money allowed me to follow this program at 100% commitment for another couple of years, I would feel awesome every single day.

Through a series of at-home tests (you buy the kits and equipment, then send in your results) plus a hair analysis and a huge questionnaire about your symptoms, they put together a long report about you. Your body chemistry is individual, and they understand that and work with you as an individual - they don't care what label has been put on your health. They go for the cause - what is out of balance - then teach you how to eat and add supplements accordingly. It's the most amazing thing I've experienced, and completely reinforces what I believe, that illness is due to imbalance and ONLY thru whole-food nutrition can we heal, not poisons better known today as prescriptions.

After just the 2-day pre-test meal plan, I went from more than 5 years of eating every 90 minutes due to hypoglycemia (yes, even after years of no sugar or fruit!) to just 3 meals a day. After just 2 weeks on the nutrition plan I felt an upswing in my energy and mood. After 6 weeks of that plus slowly adding supplements, I could see how dramatic this could be. I then experienced 6 or 7 solid weeks of feeling energetic and motivated! When I slid backward, I retested and learned that my body chemistry had shifted so much that we had to rework our plan (that is to be expected). Again, the improvements expanded. And on and on.

You must be vigilant to make this work. But it is OH SO WORTH every minute, every penny and every bit of effort to stick with it. Gang, I can't urge you strongly enough to look into this. It's about being healthy for life, not just treating our wild symptoms. As I said above, it may not cure anyone, but you do NOT have to continue losing jobs, partners, families, self-esteem and more. Your illness CAN become part of your PAST!

Best of health to all!

Some things that are helping:

Sleep: Xyrem. It's been a life saver for me: I get good deep sleep and wake up refreshed. Since starting on xyrem, my aches and pains have lessened, I stay alert all day, and have a lot of subtle improvements (including weight loss).

Hormones: I take armour thyroid, cortef. I feel very stable now, and as I get better, the doses are being cut.

Infection: I treat myself for candida on an ongoing basis, with diet, and with rotation of anti-candida supplements. I also take a probiotic everyday.

I take Proboost for the antiviral effect. When I start to catch a cold, my doctor tells me to take it 3 times a day for a few days. Otherwise, I take one every morning.

Nutrition: My way of eating is to avoid gluten, eat lots of fresh veggies, and plenty of good quality protein. I avoid sugar and too much starchy foods. I rarely have processed foods, and avoid transfats and high fructose corn syrup like the plague.

Supplements: Sam-E for mood and joint pain (I notice right away when I miss taking this one) Good all around vitamin/mineral supp. Cod liver oil in a kefir smoothie everyday. Magnesium 3 times a day, once with malic acid. CoQ10 Extra vit. D3 Milk thistle for liver health.

I have to say, I was doing all this and not seeing a dramatic improvement until I started taking xyrem. I think acheiving deep sleep allows all the supplements to be put to good use.

Update: At the first of April, I started the methylation cycle block supplements. Within 2 months, I noticed definite improvement. I sleep better, dropped the female hormones, and take less armour and cortef.

Look for any thread that discusses methylation supps, find rich vank, and click on his name. You'll find the information there.

Update 11/29/07: I am being treated for lyme disease. Not mentioned earlier in this post is that right after posting that I was near remission, I had a terrible relapse. I just happened to go to a doctor who is a LLMD (lyme literate) and he recognised that I might have lyme and tested me for it.

I still recommend all the above as helpful for me, but also hope everyone with either CFS or FM find a LLMD and get tested. Lyme is treatable, but progresses (slowly for me, as in decades) and is worth the trouble to find out if that's the underlying cause of illness.



[This Message was Edited on 02/08/2009]

Hi Daisys, I'm interested in "SAMe" Can you share with me, information please. I am presently involved in some research trials conducted by a University here in Melbourne Australia, I am now into the 2nd. week of the trial, six weeks to go. Xyrem is not available here nor is Duloxatine. Very strict and so slow if ever to release them here. I have read a lot of favourable reports from those taking Xyrem or Duloxatine. Would you like to add anything that might be of interest that I might like to share with my Doctor. Kind regards, ilikasip

I WAS DIAGNOSED WITH FMS AND SEVERE MFS ABOUT 3 YEARS AGO. I HAD TEST AFTER TEST WITH X-RAYS, MRIs AND NOTHING REVEALED WHAT WAS CAUSING MY PAIN. IT BECAME DEPRESSING WHEN MY EVERY TEST CAME BACK NEGATIVE FOR ILLNESS. A NEGATIVE RESULT FOR ILLNESS SHOULD BE GOOD NEWS, BUT IT BECAME DISTRESSING AND FRUSTRATING BECAUSE MY SYMPTOMS COULD NOT BE EXPLAINED. I FELT THE DOCTORS THOUGHT I WAS MAKING IT ALL UP, LIKE I WAS A HYPOCHONDRIAC OR SOMETHING. I JUST WANTED TO KNOW WHAT WAS HAPPENING TO ME. I THOUGHT I WAS DYING (SOME DAYS WAS WILLING TO DIE THAN TO FEEL THIS PAIN ANOTHER DAY)OF SOME TERMINAL ILLNESS THAT THE DOCTORS COULDN'T LOCATE. EVENTUALLY I WAS DIAGNOSED. IT TOOK 5 DOCTORS AND 3 YEARS TO FIGURE OUT WHAT WAS HAPPENING AND 3 MORE YEARS TO ACCEPT MY CONDITION. I HAVE BEEN FIGHTING IT EVERY STEP OF THE WAY. I USED TO BE A VERY HIGH ENERGY PERSON. FINALLY AFTER 6 YEARS OF PAIN, I SURRENDER! TAKING CARE OF MYSELF IS NOT SOMETHING I DO WELL. THIS DISEASE REQUIRES A LOT OF SELF-DISCIPLINE. THANK YOU FOR THE ADVICE OF TRYING ONLY ONE SUPPLEMENT, MEDICATION, REMEDY, ETC. AT A TIME. I WOULD HAVE NEVER THOUGHT OF THAT AS BEING SO IMPORTANT. I JUST BEGAN TAKING 1000 MG OF CALCIUM CITRATE AT NIGHT AND 250 MG OF MAGNESIUM 4 TIMES A DAY. HOW LONG SHOULD I WAIT UNTIL I ADD SOMETHING ELSE?

Exercise. I tried to start an exercise program so many times and every time I started I would have a major flare. All the suggestions said to exercise at your own pace. Well, when you go from a "normal" life to a life with FM how do you know what your pace is. I exercised too much and too hard. I couldn't keep up in even the most beginning classes and would leave feeling overwhelmed. Finally I found that I could get in a pool and just kick around with a kick board and after about 2 weeks of this I felt so much better. Now I'm walking 30 + minutes a day since the pool is cold. (I think I will join a gym that has a pool, it is so much better for me)

No strength trainind in the beginning. And as I've added in strength training I'm doing it very slowly, and only using my body as resistance. Eventually I'm sure I will be up to weights or resistance bands. But starting so very slow, and slowly building up has helped so very much.

Also eatting a balanced diet with low sodium. Also I found I have a slight allergy to wheat so I stay away from that.

I do have flares still, but there is much more time between them and it is much easier.

So to summarize. Find a very gentle exercise that's right for you....mine is working out in the pool. Take strenght exercises very slowly and work up very slowly. Eat the best you can. Get tested for food allergies.

Take care of you! Remember, if you aren't well, you can't take care of anyone else. Keep the best attitude you can. Seek out fun. Try to have fun in everything you do.

Sure, I'll respond in a separate post, don't want to get off topic here.

Daisys that's great, I'm still learning all of this posting thingo, how do we go about as you suggested, do we pm or remain in open forum? Cheers, ilikasip.

If there's a private message feature on this board, I'd like to know about it, too. I did start another thread.

Hi, I had a bit of a look around and saw this....

# Email addresses and instant messenger information MAY NOT be shared on the message board for safety reasons. They MAY be shared in the chat rooms at your discretion.

I am very aware of the dangers and (at your discretion.)

I have not followed up the info there though. Cheers.

Monkeyman, so good to see someone talking about EFT (Emotional Freedom Technique). Wanted to mention two more website to get info on it. www.eftupdate.com is the psychiatrist Patricia Carrington's newsletter about the latest in EFT research and application. www.eftsupport.com gives more info and a list of practitioners. I have used EFT for myself and my clients for years and have seen people experience great relief for health and mental issues. The hardest part about it is remembering to do it. If anybody has questions please feel free to ask and I'll answer as best as I can.

Hola,

the things that helped best against...:

- Nausea/Dizziness

* Ginger (Fresh and/or cooked as a tea, or used use it with exotic foods)

- Fibromyalgia pain

* Magnetic field therapy (My shooting/rheumatic pains basically completely disappeared!)

all the best fox Switzerland www.cfs-healing.info

When you post about what workds for you, could you please identify whether it is for FMS or CFS? They really are two separate things. THanks

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]

HOW MUCH AMBROTOSE DID YOU TAKE EACH DAY

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

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]

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!

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

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!!!

I've just ordered some and will start taking it, Dr. Teitelbaum says 5 grams 3 times per day for 28 days. I'll start lower, like just under 3 grams 3 times per day.

Could this supplement raise glucose levels in the blood?

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...

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

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

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]

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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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

What is Transfer Factor and where do you get it?

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

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

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?

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

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.

what is it??

what is it??

I am new to the forum, and am interested in starting on D-Ribose. I live in Miami. Where can I find a good source of it at a reasonable price either locally or online? Thanks.

help different people that it's very overwhelming to me. I was diagnosed recently with FM and CFS. The worst pain for me during a flare up is in my stomach. The only thing that has helped is a stomach tranquilizer called Glycopyrrote. I am wondering if anyone else has ever taken it and gotten good results?

The best thing I did was have a sleep study. I have alpha intrusion which prevents me from getting restorative sleep.

I was given Xyrem (the date rape drug) which I've been taking nightly for 3 years. I have improved so much that with pain medication during the day and Xyrem at night I hardly have a day when I can't function.

Many fms patients have a sleep disorder. Treating this problem has made a 75% improvement in my daytime activities.

abbylee

I have previously been overwhelmed with the need to budjet my energy and do the essentials etc.. Just lately I have been going out to my back room and rearranging shapes, textures and colours to make pleasing patterns. It is very transforming mentally and the activity is fairly low on energy..It is good to get lost in an activity and has been a bit of a new experience.. I wear a mask, when I need to use glue to make my creations permanent.

I have had fibro for more than 20 years... and have tried everything. So far, I think your recommendation sounds the best regimen. I will give it a try... thanks much.

cymbalta oxycodone hydrocodone for breakthrough pain soma lorazipam physical therapy trigger point injections hot showers stretching outdoor activity when I can read in bed to take my mind off the pain and depression a compassionate hubby watching funny movies and laughing being as in control of my illnes as I can owning 2 loving dogs Mini

Boy, I have to say that I was completely unhealthy and had to do a major overhaul of me. I detoxed, changed my diet, gave my body the chance to heal itself through supplements, probiotics, and vitamins, and then worked out a healthy lifestyle of exercise, diet and meditation, and I am not a whoodoo meditator, but incorporated relaxation techniques.

I was so sick and had no choice but to overhaul my entire self to give me a shot at health again. I visit boards everywhere to see what people are doing that works. I developed a website for FM sufferers and I hope that we can all help each other out.

Best of luck to everyone. Hailey

I have had FM for 37years now. I had hong kon flu followed almost immediately by glandular fever. I couldn't walk without crutches and was just about wheelchair bound. I changed my mental attitude. DON'T think of yourself in comparison to other people or what you used to be like. DO say you're feeling great when someone asks you how you are. It makes them feel good and you start on the positive road every time you say it. Say it enough and you'll convince this poor tired body that you are. Do swim. I swim 1 hour every day. It started out with 250 meteres was all I could do I now do about 15-18K a week (that's 3K in the hour). Never do more than an hour no matter how good it makes you feel. Yes you will probably be writen off for the rest of the day but as your fitness levels rise so does the amount you can do. DO have massages but not sports massages. Just a firm remedial massage not too hard.

Try really hard not to do the woe is me bit and say isn't it great I'm sitting up in bed reading of whatever. We have only one life and just cos ours sucks doesn't mean we should enjoy every bit of it we can. Love to all of you who suffer but enjoy the other bits with absolute passion.

I have had FM long before it was a diagnosed illness.

Don't take too much stuff. Toxins aare a big problem building up. that's why massage helps it forces the toxins into the lymphatic system and out.

I take zeolite whick help rid the body of toxins. Also fishoil, glucosamine and magnesium. Eat well stay happy and motivated and it won't seem so bad

Can you please tell me what the transfer factor is?

Hi

There seems to be lots of good advice here - all quite similar to the things I found very helpful for me.

It's been a while since I had any problems at all with my CFS (although at one time I spent three months in bed). So it is tricky to remember everything because lots of things I don't bother with anymore. I am back in full time work - I can drive, remember things, i have just been on an active holiday, even colds don't seem to knock me back much now...hope i don't regret saying that...

Roughly this is what i did to recover ...

1 Don't exercise....the idea is to SAVE energy.

Build up reserves by eating well and resting.

2 EAT alot of the right things. No junk food, no sugar... following an anti candida diet for the first few months (bit of a killer but important) and excluding any allergens like dairy or gluten if you find it helps. I cut dairy out and reduced gluten. I still avoid dairy. I ate lots of protein and found that as i recovered and went back to work with just a few bad periods during the day I could snack on meat or nuts and get almost immediate revival! I made sure as much of my food as possible was fresh and raw so I could get max energy from it.

3 SLEEP Even once you are out of bed and moving around during the day continue to go to bed early. Any bed times before ten really make a difference.

Getting to sleep can be difficult so having a strict routine is important. You have to wake up at the same time everyday ..reasonably early...and then even if you just stay in bed and rest..try to stay awake and out of deep sleep for the whole day so you can get to sleep at night. A twenty minute knap is ok.

4 Take good prebiotics and probiotics. I used threelac with oxygen drops.

5 Avoid chemicals i had reactions to hair dye so i cut out lots of chemicals to see if it would help. I don't know if it did because i did this at the same time as everything else.

6 Various Supplements and Vitamins.

7 Echinacea

8 Sit outside...get oxygen

I wrapped myself in covers so i could sit in the garden and get oxygen even when it was cold. I had to avoid sun and heat to start with because my bodies thermostat was messed up and it seemed to drain me of energy. These days I find heat soothing on aches and pains.

9 Be nice to yourself. It's not your fault, you can recover but recovery comes on gradually... don't get mad at yourself when the brain fog makes you stupid. Work in treats into your day somehow. I found listening to speech radio very calming and made me feel as if i was doing something. When I started this routine I had ten minutes of energy a day. By the time I finished I was able to go trekking in a rainforest.

I am a former CFS sufferer. What worked:

ALCAR Green Tea Ginseng Whey protein (incredibly helpful) Low/no sugar diet Tons of water

If anybody needs any suggestions for their specific situation, email me: alightinaugust at gmail.com

I'm not necessarily anti-western medicine... I just believe that natural/more hollistic treatments for CFS are much better.

If your on prescription pain pills, that's not a long term sollution. Don't manage the pain; defeat it.

Good luck and god bless.
[This Message was Edited on 01/03/2007]

What do you do to sleep better?

How do you obtain transfer facotr?

what medication do you take to sleep?

David Seattle

I take (prescription) 1/2 Lorazepam-1 mg. 2 or 3 nights a week so they don't become habit forming for me. Even if I don't get a good nights sleep on the other nights, it helps some. I have also tried valerian root. My cousin takes Gravol.

Cymbalta has changed my life, I have little pain, please give it a try!

pLEASE TELL ME WHAT THE SHAKE IS THANKS

Cath! You are singing my song mate! I have also found that walking for 30 minutes a day really helps! But what i really love is the summer! (summer here in Australia now) next Monday I'll be sitting in the sun and swimming in salt water. this combo makes me feel like a new woman. During the summer try standing in the morning sun for 10 minutes or go for a walk in the sun.your vit E will sore. lets face it! Us CFS pple are solar powered! Also I make sure i'm in bed by 10.30pm (during school) and up by 9am. If I sleep any longer I feel out of it for the rest of the day. I then go out the back (in my jarmies) and stand in the sun. During the winter the best i can do is stand under the kithen light. (I tried Light therapy but all I got out of it was a headache). Oh! I also want everyone to know that my Nik name is jarmie because my name is penelope Jane (pj) But pj was taken!! lol I have made some great discoveries on this site and I really do feel empowered! Can't wait to hear from everyone! Pen

WellKid isn't interesting the way you adapt to the whole deal. When I wake in the morning (I set my alarm 20 minutes before I get up so I can wake up) I think about what I have to do and the best order to do it Because of my energy levels.The number 1 on my list is a 20 minute nap before my kids get home from school so I can get thru the homework dinner prep and bed time prep. my 15 yr old is fantastic. He helps me so much. I was hit at the age of 17 (i'm soo not telling you how old i am now)and I'm still feeling the effects of those 2 yrs in bed. Sometimes it breaks my heart because my kids can see when I'm slumping. When they get up in the morning they know when I have had a bad night and they they say to me "bad night mum?" So the kids have had to adapt too! If you want relaxing music try jose gonzalez Snow Patrol and Train.. If you need a pick me up try Any type of dance music that apeals to you. If it wasn't for music I wouldn't have recovered the way i did.( I now habe an ipod nano and i love it) And wellkid. If you are the age I think you are. You will find that you will mature alot faster thatn your mates. Don't let this get you down. They don't understand. No matter how hard they try.Just go with the flow. Go out when you feel well enough. Don't skip a night out because you are worried about the next day. Go out on F friday night and sleep they next day away.don't miss out. And if your mates are like mine. They will look after you. Jarmie

This message is for Neisy...my doc just prescribed Cymbalta for me. I have CFS but was never actually diagnosed w/ FM. I did complain of leg & back pain. Do you take this for CFS or FM? I am hesitant to take it because i am not at all depressed. my main problem is fatigue and i get sick often with flu like symptoms. Do u think Cymbalta will help me?
[This Message was Edited on 01/15/2007]
[This Message was Edited on 01/15/2007]

My CFS started suddenly like a flu nearly 9 years ago. From the begining I knew it is a brain disease. From the neurological point of view CFS manifested like a dementia with a terrible dizziness, from the physical point of view CFS resulted objectively in a decrease of physical power of more than 99.99%, from the imunological point of view I "caught nearly all that flew around me" and I had constantly sore throat. There are theories of CFS experts that the immune system reacts inappropriately to a more serious infection which results in a brain damage.

I responded dramatically to citalopram (Celexa in your country) 4 years ago. I took this antidepressant more or less accidentally since I had no depression. The effect was miraculous although it did not lead to a full recovery but I fully realised that CFS is a brain disease. Since then I have tried over 50 neuroactive drugs. I also noticed that the dosage of these drugs is very important and that some of these neuroactive drugs can be seriously harmful. Currently what works best is: 10 mg citalopram, 200 mg amisulpride, 50 mg amitriptiline, 100-200 mg gabapentin. As a result I am able to work full-time.

Sincerelly Yours

Ales

Czech Republic

Hi. I read your What works for me. I tried exercise and I hurt so bad I had to stop but my doctor wants me to do it anyway, My question for you is; When I go to bed around 10 I lay awake for awhile until I have to get back up and usualy I have a snack. When I go back to bed I lay awake for a while or I may fall right to sleep. Do you have a suggestion on what I might do. When I am not working I cant get out of bed until 8 or 830. When I go to work I feel so tired I want to quite and that I cant do. Any suggestion will be a help. Thanks

Hi where do you get your vitamins and all the things you take? Linda

I have FM and live a pretty productive life, work full time, selling appliances. We are having a very cold winter and my pain level has really gotten out of control. I take Tramidol and a muscle relaxer but seems to not be too effective this time of year. I was reading other FM people "What Works for Me" and noticed several take Fibro Multi with Malic Acid. I just ordered my first 30 day supply. You requested what was in the shake? Did you find out I would also like to know......

The biggest thing that has helped with the brain fog and sudden nap attacks has been avoiding toxins such as perfumes, cleaning chemicals,scented personal care products, and cigarette smoke. Last year I discovered that almost instantly after smelling cleaning products my brain would fog up and I would get really drowsy. this explained why I would get so drowsy whenever I tried to do housework.Stores are bad too because of the cleaners they use and all the smelly scented products that they carry. I also often felt crappy and was ready to go back to bed after I had my shower and got dressed. Now I know that it is because I had just put fragranced shampoo on my hair, fragranced lotion on my skin an makeup-particularly bad is foundation- on my face. By the time i was ready for the day I was sleepy and brain foggy. Switching to fragrance free , chemical free products has made a big difference and has been easy because my local grocery store has a fairly good organic section and carries every thing I need

Hello ProHeath:

I believe that 'good' medical care rules of over much.

There are so many of us who do not have it (I think so for myself) and yet it is so improtant.

My doctor, for example, takes on a very cold nature and just writes the prescriptions.

What can i do?

nyrofan

Was what my Dr. ordered thinking it might help. He started me slow, and then increased the dosage. After about six weeks I was so anxious I couldn't stand it. I have heard that sometimes anti-depressants can have that effect on people and the anxiety eventually goes away. I was having a really rough time at work, so I had to go off of it and back on Wellbutrin which I'm not sure helps my FM or not. Has anyone else experienced anxiety with Cymbalta? I am new to this....diagnosed 3 months ago, but not new to all the symptoms I'm sad to say.

Ok the icon I chose isn't mad but there is no question icon? You know the smiley with the question over its head! So ok no sugar! That sounds awesome, but then what do you eat? Tell me! Blessings~~Imasleephelp

Ok, I think I said this, but I have had CFS since 1998 and I'm looking to find a more natural approach without overdosing because I'm already on alot of Western Meds which is fine but no more. The side affects are too difficult. Please don't try and shove your ideas, just share. Thanks~~Imasleephelp

Please share if you are homebound and what works since you are if you are. In America~~Imasleephelp

Move my stuff from the end up Moderator!~!~Imasleephelp

It may be something that I would be interested in trying.

Could you please explain what this is?

I am on that and I feel I did better on Effexor. The only difference I can tell is that my hands seem to be a little better but my headaches/migraines are much worse (I think that is due to stress and anxiety). Also the $$$cost$$$ is outrageous. I have to see the DR and try something else.

I was diagnosed with EBV & CFS in 1989 (freshman in college)... I do believe that a healthy diet and getting ample sleep has helped. I have been to numerous doctors over the past years and no one seems to know how to treat this mystery disease. I decided to go to a Homeopathic doctor last week. He gave me a shot of a "remedy" and i am still waiting to feel better (having a 6 month old & 3 yr old does not help)! He also told me to try a product called Zeolite (www.zeoliteinfo.com). He said that will rid my body of all kinds if toxins and will help improve my overall health and well being. I will try it this week and get back to you all. Anyone heard of this or try it?

Admitting I needed professional help! When I got that help: 1) Flurox 2) Stopping drug & alcohol abuse 3) Light excersize 4) Evening Primrose Oil 5) Fish Oil

I believe Neurontin is used for neuropathic pain or all over muscleskeletal pain. My hubby was on it & not for anxiety.

I hope that may help someone.

your friend- Fungirl

- Getting the diagnosis: fibromyalgia with myofascial pain and chronic fatigue

- Pain meds to take me over the pain plateau and back down again (I took Oxycontin and Vicodin, but now only take the Vicodin as needed)

- Retirement!

- Learning to pace my activities

- A good multi-vitamin/multi-mineral pill, plus C complex, B complex, calcium, Omega3 fish oil, CoQ10, fiber tabs, vitamin E, Ginko-biloba, etc.

- Oatmeal every morning, which helps curb my desire for snacks (I eat mine with cinnamon, vanilla, raisins, sunflower seeds, green pumpkin seeds, and toasted walnuts so I actually like something now I used to detest!)

- a loving husband

- a good pain doctor

- a good chiropractor

- a good internist

- a heating pad in my recliner

- walking

- gardening

- getting out in the sun

- Neurontin

- drinking lots of fluids (I've learned to love teas: caffeine tea in the moring and either decaf or herbal the rest of the da)

- learning to let some stuff go, like housework

- Vicks Vapo rub (a little over the bridge of my nose at night gives my sinuses the feeling of being less stuffy

hi ya all - 1st time here & very new w/dis stuff

What works for me is more of an attitude remedy. I'm 23 and have been dealing with fibromyalgia for some time now, I went through major depression spells with a lot of anger at people who didn't understand that the pain was real for years before I accepted it in myself.

It helps to appreciate my effort when I'm feeling more or less physical and understand that there isn't any personal judging going on. Sometimes it's easy to match discomfort with a criticizing thought towards myself like thinking that what I feel is what I'm projecting towards the world that is a downer to be around, but it really isn't taking energy from other people or about them or making me negative. Start to be more on your side by directing a nurturing attitude towards yourself and your uniqueness and right to be comfortable as much as you can be. Fibromyalgia can be a big part of your life but there are parts of yourself and your life that can remain in wonderful tact during the rough patches like love and thanks for all the support and understanding that exists in the world when it does exist.

Trust me, self support goes a long way. If there are any attitudes that you have that make you suffer more than you have to by directing impatience with yourself at yourself (like feeling like you're a burden) let it go as much as you can each day. :)

*Rebecca*

Hi Stormy,

you said you used Probiotics for candida....is this a perscription....or can you get it over the counter? I get alot of yeast infections. My first one I was only 11. Thanks!

Faith

I noticed you wrote green food drink and someone else wrote about it to. What is this?

Faith

Hi, you mentioned the thyroid....My younger sister has Graves Disease and my older sister has thyroid hypo....I have thought that maybe my fibromyalgia could be directly linked to the thyroid based on this fact alone...but my tests always come back normal. Is there something I am missing? Some particular test that I should ask for? Thanks!!

Faith

could you tell me what d-ribose is. i have fibromyalgia and hurt all the time , my pain meds only take the edge off a little.

and i am so tired of feeling the same way everyday any suggestions i'd appreciate

thank you samigirl

As of today since I have tried many things!

1. Quitting my very physical job!

2. Learning to pace myself and not do much physical stuff for very long.

3. Neurontin

4. Praying for strength

5. Meditation and relaxation tapes.

6. Mild exercise (walking, stretching)

6. Changing my thinking to be more positve so that the pain doesn't scare me as much.

This is my first time posting-not sure what I'm doing. I was curious as to what the shake consists of?

Hello and welcome!

A few suggestions since you're new:

Try posting your shake question on the general board, you'll get more answers. This board is just for "what worked for me", not really Q+A. You can also search on the general board by subject. If you put in "shake" I'm sure you'll find lots of info.

Fill out your bio with whatever info you feel comfortable revealing. At the least, it would be a good idea to say what illness you suffer from, eg: FM or CFS.

Hope this helps!

The dislocated first cervical vertebra, called the atlas, is the main cause of dysfunction in the body & the psych, of pain, disability, infirmity, & degeneration. I have been suffering with FMS/CFS for 6 years, also high levels of EBV. Tried both western medicine & alternative with no relief. For the last 2 years I have been pursuing the theory that the C1 vertebra is out of alignment & causing my symptoms. Several chiropractors confirmed that my C1 was out but the adjustments they made could not permanently keep it in. I even did long term chiropractic treatment in Tahoe with some success. Four months ago I was introduced to a new treatment for the dislocated atlas. It is a safe method by means of specific massage, spasm of the short muscles in the neck can be relieved, freeing the atlas to its natural position. A single session ($250) and the once dislocated atlas has been correctly repositioned, it cannot get out of place again. It is called the Atlas Pro-filax. The dislocated atlas causes a narrowing of the hole at the base of the skull & the spinal canal. As a result the spinal cord & some of the cranial nerves & nerve pathways are permanently compressed. Permanent pressure is placed on the vertebra & carotid arteries & associated blood vessels. My body is HEALING! I am getting stronger every week. Anxiety, depression, brain fog, fatigue & pain is gone. I still have some tight muscles on the right side of my neck, I continue to have massages. Numbness & tingling in hands and feet are gone. Headaches, dry mouth, blurred vision and a heavy head are gone. 2 months after this treatment I am sleeping. I have sent several fibro friends for this treatment and they are all healing. There are three practitioners, they are not chiropractors, in the US, all are in California. I am thrilled to share this information, I know it sounds too good to be true but my mind was open and I was ready.

Lena

Has anybody tried this ......the Guaifenesin Protocol.....I just found it in a book......."Everything your doctor has NOT told you about Fibromyalgia". This is related to removing phosphates from the body?????? Still researching and would appreciate any input????? Experiences????

I was on guaif for 2 years. I was a patient of Dr. St. Amand. I had some improvement but it was a tedious treatment to follow but I did it. About 14 months ago I went off of it and did chiropractic treatment. I am no longer on it, doing well after the Atlas Pro Filax treatment. Lena

OPC-3 is an all natural supplement that fights free radicals. It contains pine bark extract, red wine extract and grape seed extract. It allows your body to heal itself. I started taking it and every week I noticed improvement. I lucklily have very few symptoms now and it's only once in a while. The woman who introduced me to it said that I would see results by the end of one bottle and I really did. I started working again 2.5 months after starting to take OPC-3 and have now been at my job for almost a year and a half. Here is a link to information about OPC-3.

http://www.marketamerica.com/jenga/index.cfm?action=shopping.uoProduct&storeID=8&prodID=13009

Over the past two years I have been eating a more healther diet and doing a lot of home cooking.

I have found that pineapple, garlic, onions and other foods with nateral anti-infalmortorys, have helped me. I now have a lot more energy and i am more paine free.

I make my own Pizzas, savery tarts, using wholemeal flour, free range and organic foods; because i have made it myselfe I know what is in it.They help me feel less tired.

I have found the moment I go back to erating junk food or processed food I feel really ill; aso have nticed that foods high i suger and salt make me fell unwell too.

I total recomend eating a good healthy diet, five potions of fresh fruite and veg a day,foos high in whle grans, plenty of water and using whle meal flouer to make things with.

I am also going to try to eat more fresh fish rich in omega 3, so thats samon, tuna, sardiens and other oily fish, theses too are natural anti-infamoretries. Walnut are good too, sadly i can not eat nuts as I have an allergiey.

hope this helpful, oh and try yoga or other gental excercise too, as I have found this helps with stiffness.

Stay posative and take things one step at a time, and most inportanly have fun to.

thanks for reading

Elaine please do reply

Do you know of anyone in Northern Calif who does this treatment?

anniegal, there is a Michael Haene in Nevada City, CA. His phone number is on the website atlasprofilax.com

Lena

Hey Everyone.

I have started on Fibro Complete Multi and it seems to help me get that boost needed in the mornings. My pain is somewhat taken care of with Darvocet and Morphine, but am looking for an alternative.

If you cannot work...DON'T! Get yourself well.

I am starting on probiotics and will try to get back to you all on how it's working.

Take care
[This Message was Edited on 03/02/2007]

You struck a nerve! I get so tired of people (mainly my husband) saying that I just need to exercise. He just doeans'nt get it!

I have still not reached a level of health that I want, but I'm much better than when diagnosed a few years ago. I have been a vegetarian for the past year. I don't know if it is the cause, but I feel better. I do eat dairy food. Also, I try to get to bed at 10-10pm. I almost alwasy have a cup of hot chamomile (sp?) tea. My favorite is mixed with mango. Yum, and so relaxing. I eat fresh fruit several times a day and vegetables of some kind everyday, but not enough.

I use the slow cooker a lot so I have a rice and bean or other dish ready to warm up. That way, when I'm not up to cooking and want to eat something not as good for me, I can reheat it and have a meal.

I also take elavil, 25mg., tramodol, 50-100 mg. every night. Sometimes I take tramadol in the daytime too. Recently, I started taking Wellbutrin. It might help-but too soon to tell for sure. I tried other combinations of medication and different doses. This is the best for me. I am a little groggy in the morning, but not bad. Any less and I don't sleep and I hurt.

I'm trying to be good taking vitamins. I just hate to take more pills of any kind.

Oh yes, I get a lot of cramps, so I often sleep with a heating pad on my legs, especially if I wear a pair of shoes I haven't worn in awhile, day.

Of course I need to run a fan or I get too hot.

A hot tub or shower is great too.

Xyrem - 9 mls twice each night Oxycotin - 180 mgs every 8 hours Oxycodone - 30 mgs 4 times a day Singular once a day Zyrtec once a day Premarin 1.25 once a day Bentyl twice a day Phenergan twice a day Requip - one in the morning and one a bedtime Clonidine twice a day Xanax - twice a day Flexeril 4 times a day

abbylee

When You used the "Green Food Drink" was it the one from the store here? I just wondered.

I went off the provigil. I'm taking my multivitamin, my slo-mag and drinking Ensure so I won't lose anymore weight due to the ulcers on my tongue.

No I don't have a linguring cold. Yes I do have CFS and I've had it since 1998 and Sept. 2005 until present has been the worst and my Dr. and I and my family and friends don't want it to get worse. The ulcers on the tongue are either A) Hives or B) A result of the Dry Mouth disorder (not cottonmouth) from meds and/or CFS. Also, Dry Mouth can cause you to lose your taste, and it has. So we don't think the sores and whelps on my tongue and on my outside of my face are going away anytime soon. My Dr. is going to start me on low-dose Heparin which worked for two friends of mine who have CFS.

They went off of it after 2 years, but they had already started a strong regimin of suppliments and nutrition. And now they have one of the State of Virginia's largest Support Groups.

Blessings and thanks for any help.~~Islebabe

What is that? Bromalaine? Let me know. Islebabe

Yeah, I just reported Cymbalta and Provigil to the fDA.

I take my meds daily have oatmel for break-fast ( no sugar) Exercise on the treadmill Drink a glass of fresh made juice Flax oil with omega3 multi organic multi vitamin and I feel great for the most part. I get a little tired from time to time. Oh and the most important one YOGA!! I practive breathing exercising and yoga and it has helped be to turn the negative into a positive. I hope this can help someone out there but I think the most important thing to remember is that... Health is something that we need to work out with LUPUS and we have to never forget that.

I don't think ya'll realized how much your information has helped me want to help myself supplimentally and nutritionally. HAY!! I got to go out today with my hubby and that's a big deal when you are homebound.!! Thanks again``Islebabe http://beautyforchrist.braveblog.com

I was telling Stormsky (sp?) the same thing I'm going to tell you!!! What ya'll have done by posting what helped you is amazing!!! It's helping me to help myself in the ways that you guys have. I have a group at Google for Christians with CFS and it's called Beauty Angel Island. And I have a blog for all to read about my last 6 months with this dang disease at: http://beautyforchrist.braveblog.com Come visit. Islebabe

Lisa~~It's as I was telling Stormsky (sp) (sorry it's the "wooze") and Gothbubbles, ya'll don't know how important this private work you have done and listed it out for others like me is helping so very much. I keep thinking that girl or lady, went totaly sugarfree!!! HOW? Cold Turkey? What? I just thank that you are all amazing!! My blog is: http://beautyforchrist.braveblog.com and I have google group at Google called Beauty Angel Island. Blessings~~Islebabe (I'm not use to this because everywhere I go people call me beauty!

What is the name of the antidepressant developed for neuropathy but works well for fibro folk as well. It is both an SSRI and SNRI.

I AM NOW IN RECEIPT OF 'THE GREEN FOOD DRINK POWDER' STARTING TOMORROW!!!! YES!!! I JUST CAN'T WAIT TO START THAT NASTY STUFF!!! LOL!!!

supplement. I've been taking it since Sept. 1995 and truly believe this FM stuff would be a lot worse had I not been on Grapeseed Extract 4 yrs prior to FM hitting.

I've posted tons of info on this great antioxidant!!!

For me, staying off prescription drugs is KEY.

There's so much more but so much has been said by so many.

jam

Hi Stormsky!! Good morning there girlie! Did you say that in jest or do you actually have a post on here that is called "My Road to Remission?"~~Islebabe

Ok, I went to the Transfer Factor page. I understand the history, but when we say that here, do we mean what my Mom used to say long ago when I'd get sick "You will feel worse before you feel better?" I've started the Probiotic Green Drink, best thing I could have ever done for fiber. On the grasses they put in there, are they like free of something so our allergies to pollination don't go haywire? And the glutin free wheat, even though I don't know if I have a problem with glutin, I'm willing to find out without having a light stuck down my throat. Also, my husband and I were talking about the fact that it seems like my allergies have kicked in, itchy face, itchy nose, watery eyes and of course still, ulcers in mouth and outside mouth on face which aren't infectious, because they were swabbed. Going to a new allergist/immunologist as soon as they call me back. Thoughts anyone? TALK TO ME!! Blessings~~Islebabe

Did you ever find out? I'm looking for the same answer.? Islebabe