so many Theories but what can I do, please help

Discussion in 'Fibromyalgia Main Forum' started by carebelle, Dec 1, 2006.

  1. carebelle

    carebelle New Member

    I have been reading so many theories about CFS that my head is spinning I have only used rest to try and combat my CFS because I just do not know where to start. I also do not want to make things worse on my self. After recently finding some pain relief I have started to look for a way to help my CFS.

    HELP....... Where do I began? I am so tired and just have no energy or desire to exercise. I am NOT depressed but do stay on antidepressant drugs because of depression and low serotonin levels. I am just Tired ALL THE TIME.I do not take any supplements because I can not digest things and my stomach hurts from even Vitamins.

    How do I get My Doctor to help me or what kind of Doctor should I even go to?

    I do have a appointment on tue with a Endo and also a Physical Med Doc. I am praying they can help.

    Where did some of you start and how do I even know where to begin?
  2. Catseye

    Catseye Member

    Start with your diet. It's something you can do immediately and keep doing and it will only help you. Eliminate wheat and dairy to see if that helps and load up on vegetables. Avoid sugar and high carb stuff like pasta and potatos. No soda or junk food, of course.

    As for a doctor, when I first got ill I probably would have benefited from an endocrinologist or an intelligent liver doctor, as opposed to my stupid one. If you look at doctor Cheney's complete protocol, you can go through it and decide what symptoms you have and what tests and such need to be addressed. He will also recommend alot of supplements you can use. His article is available in the short version in the library, search Cheney and look at Nov 8, 2002.

    But I really would say look at the complete article as it explains alot and you will know what you need to do:

    http://membres.lycos.fr/chrisdel2/association/cheney/cheneyII3.html

    The last 2 "l"s (before html) are capital i's. The ones before are L's.

    He has treated thousands of cfs patients and know's what he's doing. I am recovering quickly now thanks to reading and studying this. Also Jacob Teitelbaum, a doctor who had cfs, has a good list of drugs and supplements to take. Alot are the same as Cheney but Cheney explains more and goes into more detail. Here's his:

    https://www.endfatigue.com/home.nsf/Basic?OpenFrameset&Frame=main_frame&SRC=Editable+Documents/Treatment+Protocol?OpenDocument

    I got cfs from hep c and it took awhile to go through these articles but I'd still be in bed in agony if I didn't. good luck to you! karen


    [This Message was Edited on 12/01/2006]
  3. shar6710

    shar6710 New Member

    The possibilities seem endless don't they?

    I agree with Barrowinnivations that you should try to eat as healthy as possible. I haven't given up dairy (yet) but I did give up wheat and I feel that helped.

    Then you must just decide which path you are more comfortable with. If you are more comfortable with traditional medicine and have a PCP you trust I would suggest seeing Mezombie's post:International Assoc. for CFS on ME/CFS Management.

    The article titled "An Approach to Finding Physician Care" really breaks down treatment into simple steps that even the most foggy brain can understand. If you like it print it off and take it to your doctor.

    Good luck,

    Shar
  4. NyroFan

    NyroFan New Member

    Carebelle:

    I would do what the girls above suggested, but I would also go through the yellow pages and go down the list until you hear someone say 'Yes, we treat CFS'.

    It may be worth the trip!

    nyrofan
  5. AllWXRider

    AllWXRider New Member

    CFS is a symptom. The problem needs to be researched further. Like a virus? Mercury toxicity?

    Heavy metal testing can be done with a Hair Test. Don't worry about the numbers, but if mercury is >0 you need to chelate it out.

    Epstein-Barr, Cytomegalo, CoxSackie and HHV-6 are the main viruses to test for. If you have a virus. www.prohealth.com has Transfer Factors targeted for your specific virus: http://www.transferfactor.ws/
    Also, Dr. William Wong has an enzyme approach:
    www.drwong.us

    Getting well takes time. You have to be patient.

  6. carebelle

    carebelle New Member

    I know it takes time .But I believe I have had CFS sence I was 14. I think it went into remission at times but has come back several times.Except 7 years ago I was DX with it and it has never gone away.I basically feel tired to exhausted all the time.
    I never feel rested even after a full nights sleep.Yes I do wake up a couple of times a night to go to the bathroom.I also take antidepressant meds that make me sleepy at night. But I only sleep about 2 solid hours.
    I am over weight but was very thin as a teen. My doctors will not believe me when I say or my husband says I do not eat alot. They do thyroid test they always come back normal.

    The only thing that has recently showed up in my blood work is my liver enzymes are a little high.
    I do not really get colds anymore except for maybe a couple of days if that.
    But I do not go out much around groups of people who may have colds.
    I'm pretty much in my house except for Dr appointments.
    What keeps me in is feeling exhausted and back pain,leg pain.I can only walk a few feet at a time.
    My husband has grocery's delivered because I can not carry them and he works so many hours. Its only like 6 dollars and a tip. But I would love to feel strong enough to do it myself.
    I do eat a healthy diet. I gave up pop (coke ) over a year ago that was the worse thing I did. I use little sugar .I am going to give up red meat again .I very seldom drink coffee anymore. I do drink green tea and white tea.

    I guess I need to eat more veggies.I do drink lots of water all day. I do not eat much bread hardly ever white bread .When I do its wheat. But I do not eat much and it doesn't seem to bother me.

    If I could just feel well enough I'd take a cooking class for vegetarian's would love to go out for a few hours a day and take classes or visit a friend.Or just go to the mall for lunch and a walk.
    I'm just so tired of being tired.
    I am thankful some of my pain is gone .I hope this is the beginning of some other changes that will give me more energy.

    My biggest problem is my mind has all these wonderful thoughts about what I'd like to do but my body just cant do them.Very frustrating. I'm only 53 and feel like I live in the body of a 93 year old.
    Thank you to anyone that has taken the time to read all of my venting ,I'm sorry I've carried on so long today.
  7. shar6710

    shar6710 New Member

    IMHO:If you aren't sleeping well then I would really suggest you start there. Get your doctor to refer you to a board certified sleep specialist. You may need to have a sleep study done.

    Poor quality and quantity of sleep is a symptom that can be treated. If you are not sleeping correctly your body and brain cannot repair itself and that may either be causing some of your symptoms, making symptoms worse or both.

    I wouldn't settle for your PCP just giving you sedatives; you need to be evaluated by someone who really knows what they're doing.

    Good luck,

    Shar

  8. mbofov

    mbofov Active Member

    They are much more educated about diet and supplements than regular M.D.s.

    Also, educate yourself. Read everything you can. Read Dr. Teitelbaum's From Fatigued to Fantastic.

    The person who has helped me the most is my chiropractor who does muscle testing. All my blood work was always normal, the regular docs didn't know what to do. My chiropractor with his muscle testing diagnosed weak adrenals and gave me supplements for those, he helped me with a myriad of digestive problems, saved my gallbladder, helped me with a liver detox, and more things. Without him, I would felt lost and hopeless.

    Mary
  9. carebelle

    carebelle New Member

    with a plan like eating more veggies and yogurt but I have to be careful fruit bothers my stomach. I also gave up dairy years ago I am allergic.

    Thank you sometimes we feel so overwhelmed and just do not know how or we are scared to take a first step because it may be the wrong step ,so we do nothing.
    Just by giving me the steps to start really makes a different in how I feel .I can start in those foot steps because you were more specific with what to do. Thank you again.
  10. quilp

    quilp New Member

    Hello I seem to remember you having similar symptoms to me especially in relation to the abdominal area. Perhaps you have a candida problem ? I got rid of my candida and I now have more energy and I can read, watch TV, go on the internet for hours at a time; something I haven't been able to do for over a decade without severe repercussions.
    I too put on weight but given that my body was craving for food all the time and the fact that I was unable to exercise because I was so exhausted, what did my GP expect !
    Mark x
  11. Catseye

    Catseye Member

    You said "eating more veggies and yogurt" but that's dairy!! To see the no-dairy improvement, you have eliminate all milk, cheese and yogurt and anything with them. And do it for at least one month. It's not only that the proteins in milk curdle in your stomach and become irritating, but they can set off your immune system and make you hypersensitive to things that ordinarily wouldn't bother you. Like me and cats. If I drink milk, then I can't cuddle with my cats, I sneeze my head off.

    And especially with IBS. I have leaky gut syndrome, probably you do, too. This means the dairy proteins are passing through our intestinal membrane into our bloodstream and have to be eliminated. That causes a lot of problems. In fact, I suspect I gave myself leaky gut syndrome from drinking milk. I had stopped when I first got sick, but I thought if I got raw milk, without being processed, that it would be okay. So when I was feeling really good, I started with the raw milk. Boy was I wrong. And it crept up on me slowly, so I didn't know right away that all the problems I was having were because of milk.

    That was really dumb of me because it set me back about a year in my progress. But now I know for sure and I'll never touch it again. Did you know Asians can't digest lactose and don't drink milk? The US has the greatest milk consumption and the highest rate of osteoporosis.

    Now that I've changed the subject to osteoporosis, just FYI, the main causes of osteo are excess animal protein (the body needs calcium to adjust the blood ph when you eat protein), caffeine, sodium (only in the presence of a low-calcium diet, BTW), tobacco and lack of exercise. Milk has alot of protein in it. All the advertising is pretty much pushing milk because it has calcium and you need it. And you do, but milk is probably the poorest choice of calcium you can make. The body ends up withdrawing calcium from your bones to neutralize the proteins and lactic acids in milk. I've emailed the American Dairy Association about these "problems" and I'm having a hard time getting a straight answer. That means they already know the situation.

    That should help you get off dairy!! good luck, karen
  12. rwolf

    rwolf New Member

    It is an exstremely important question you ask. Between my mother and I we have had CFIDS for over 55 years. The best advice I can offer is if the doctor has compassion it's a good place to start. If you think they aren't hearing you or even worse, not listening to you, RUN!!! If they truly seem to have compassion, start there.
    rwolf.
  13. Catseye

    Catseye Member

    The short answer is that kefir is not good for you. Especially if you already notice GI discomfort. Your body is telling you it doesn't want it. Here's the lonnnngggg answer:

    The problems with the dairy are many. Lots of people can drink kefir if they have a "dairy allergy" but that's because they are really lactose intolerant. The lactose is the sugar in milk and asians, for example, can't digest it. That's just because you need a particular enzyme to digest it and it is an enzyme that their pancreas doesn't make. If it was just lactose intolerance, we could all take the enzyme in supplement form and indulge.

    But the real dairy intolerance here is more about how your body is reacting to the proteins in the milk. I don't think it's an "allergy" like poison ivy or some people with peanuts, like you couldn't drink a super sized milkshake and then go into anaphylactic shock. But it still sends our immune system into overdrive, panic mode and then you become hypersensitive to other things. Like me and cats. I'll sneeze all the time when I drink milk.

    Even before I got ill, I had given up dairy when I read that you could get rid of hay fever and allergies by doing so. I did it and it worked. It took like 2-3 months but then I never sneezed again! It was when I got cfs I started drinking organic milk and then finally realized it was one of the things making me feel bad. Why did I do it? God knows!! Brain fog!!

    A few months ago, I went to this naturopath and he stuck my finger and put some blood under a microscope and pulled it up on his computer and we looked at my blood. They don't do this in labs!! We saw my blood cells all clumped together and a few candida and some squiggly, little parasites which freaked me out and some big funny-looking things that he said were undigested food particles. I had already suspected leaky-gut syndrome and that was proof.

    I had been drinking raw milk and raw milk yogurt because I thought they would be "tolerable" rather than pasteurized, processed milk. This was long after I quit the organic milk. I started drinking milk yet again! I'm so stupid! So I was wrong again, raw milk is bad, too. There's just something about milk the body doesn't like. If you're in good health, you won't notice anything from it, maybe some allergies. But when you get cfs, the slightest "bad" thing seems to affect the body alot more.

    I think so many things are not operating properly (mitochondrial malfunction, production of amino acids not happening sufficiently, hormone imbalance, etc.) that the body is already "compensating" and it has changed the way it functions to get along differently and when you force stuff on it like milk or let's say any poison, you feel it 100x more than you normally would.

    I had hay fever all my life until I quit dairy. I didn't get the hay fever with the raw milk but I got worse symptoms like I felt horrible but not right after drinking it. That's why it took me so long to realize it was the milk. It finally dawned on me one day so I stopped and a few days later I knew that's what it was. So I think all those ads about milk doing your body good? What a bunch of crap.

    If everybody knew they could eliminate their allergies by giving up milk, who would drink it? And that means while we were in good health and drinking milk, I think it was doing damage then but not enough to make us aware of it. We know now because of cfs. Watch what will happen when the dairy industry figures out what I've said here and that cfs people are finally bringing to light the fact that MILK IS NOT HEALTHY!!! It's sweet and satisfying and I miss my cereal and milk like hell but too bad.

    There's too much money in cereal and milk products, cheese, yogurt and so on. It will be a real fight before you finally see on the news or an ad saying "don't drink your milk, avoid it like the poison it is!"

    My new cfs theory: The only way to recover from cfs and fm is to eliminate everything unhealthy from diet and environment. That means too much income lost to the companies that make these products. That means the more our plight becomes public, the less money some people will make. That means nobody is in a rush for this to happen. I think I'll write a book about this! karen
  14. Catseye

    Catseye Member

    If you can afford it, go with Primal Defense. I use it and it has alot of all the good stuff. Here's what Cheney says about probiotics:

    Then a polymicrobial probiotic without fructo-oligo-saccharides. You don't want to use a probiotic with FOS, because FOS is simply fertilizer for the bad bacteria and makes them grow faster. [Probiotics are sources of healthful microflora. A good product will include acidophilus, bifidum, rhamnoses, and possibly others.

    karen