New CFIDS Question Concern

Discussion in 'Fibromyalgia Main Forum' started by MrLund, Aug 9, 2008.

  1. MrLund

    MrLund New Member

    Hello, I am 24 years old and I am new to CFIDS. Apparently, my doc just said all my symptoms are related to CFS and that is it.

    It all started few years ago when all I felt like doing was sleep and sleep, I hated to do anything. I never felt like doing any in life.

    Major symptoms that concerns me the most is ,

    I am unable to concentrate, feel dizzy & light head along with lazy eyes.

    For example, if I stair at an object, I start getting headaches in the frontal lobe of the head along with feeling lazy & dizzy.

    At this point, all I feel like doing is just close my eyes and lay down.

    This has messed up my life , I can concentrate and study or remember anything.

    I went to a Nuero who is running bunch a test so far.

    My MRI is normal as of last week. thats good.

    I am waiting on ENG & Brain Wave Test.

    Q: Can someone tell me what this may be or am I the only one who is having all these problem.

    Q: My CBC always shows that my body is fighting a infection, my lymphocytes are always have been elevated. Is this normal for everyone ?

    Q: Any suggestion, tips or test I can do ?


    Any help is great at this point.

  2. ladybugmandy

    ladybugmandy Member

    you have come to the right place. there is a lot of information just have to search for it.

    did a flu-illness trigger the CFS?

    my first action would be to find a proper CFS specialist in your area and begin testing for viruses, bacteria, and fungi.

    good luck
  3. ABLUV

    ABLUV New Member

    So sorry you're sick. It sure does sound like you have CFS, I started out the same way. I was 28 when the sleeping started but I was 25 when I started catching bronchitis, stomach viruses, respitoy infections and sinus infections over and over and OVER. They put me on antibiotics over and over and OVER. My poor immune system is wrecked. It says there's an infection but the doc can't find it. I produce hordes of antibodies for viruses that aren't active is what the doc told me which drains me of energy. At least that was his theory.

    You're taking the right steps. Testing for everything: Lupus, Lymes Disease, MS, Anemia, B vitamins, D vitamins. Check for everything you can afford to check. If it's Chronic Fatigue ask around for a specialist who can teach you how to manage your symptoms. Surf around this website; it is a wealth of information to help you survive and even thrive with CFS.

    Do you drink soy milk? I just discovered that soy milk triggers bad fatigue for me. So I'm swearin' off the soy. Yep, I'm on the wagon now gang, yeeeha...:)
  4. Catseye

    Catseye Member

    You can start by investigating gut dysbiosis (which causes nutritional deficiencies which cause our major symptoms) and major infections like lyme disease. I'm treating the gut dysbiosis, which is also treating my own major lyme disease infection, and I'm coming out of this. I was sick for over 5 years. See my thread with "comprehensive stool analysis" in the title. You can find it with the search function. I go into detail about the tests I've done and what I'm doing about the results. It's working. I found an expert online who is getting me over this and we're doing everything by phone and email. I have tests done and he gets the results and makes supplement and diet recommendations based on everything, including the answers to the 200-300 questions I completed on his website. His name is Gary Farr and he's at becomehealthynow. He knows what to do about CFS and just about any othe chronic illness out there. I was very lucky to find him, he's a real health expert unlike medical doctors. That's why they can't find anything wrong even when we feel like we're dying. They refer us to shrinks like we're morons just because they can't figure out what's wrong.

    CFS isn't incurable per se, it's only incurable by a medical doctor because you can treat it with diet and supplements (which is what you really need) and doctors can only prescribe drugs and surgery.

    You have to fix the guts no matter what the problem is. The guts are also the heart of the immune system. Then you may have to fix some other things, too, but the guts are the main thing along with digestion. Then you should go get a reliable lyme disease test. You'll have to do some research to find out which is the best one. I had one when I first got sick that said negative, but I've since found out it was one of the unreliable ones. I probably could have saved lots of time, trouble and agony if I had done a good one first. Mostly, medical doctors will be of no help and will just suck your wallet dry.

    On January 18 of last year, I did a thread called "neurotransmitter precursors". This will explain the various amino acids that are the precursors for neurotransmitters which are what you use to think and feel good. I had severe brain fog before I started taking them.

    good luck

    [This Message was Edited on 08/09/2008]
  5. MrLund

    MrLund New Member


    I appreciate and I am great full I have found a site like this.

    Yes, you are correct, all my doctors think I am moron who is just depressed and have anxity, I know I am not depressed or have anxity problem.

    Currently, I am seeing a doctor who is so called ' CFIDS ' M.D. doc, but so far he hasn't done shit for me ( sorry ).

    I have been tested for following
    CMV = Yes, I have it but inactive.
    HHV 6 = Yes, Inactive
    HIV = Not found
    Lyme = Not found
    ANA = Not found
    EBV = Not found
    Heb B, C = Not found
    Steph = Not found
    Mycolplsama = Post exposure.
    Sojram = Not found
    Lupus = Not found.

    Following Vitamins I take Daily
    Vitamin C = 1000 mg
    Magnesium = 500 mg ( stops lot of pain in the body )
    Vitamin E = 200 IE
    Fish Oil = 2400 mg I think ( 4 cap a day from nature made fish )
    B-Complex = 1 tablet a day

    Daily Working out
    M , W, F = 1 mile running
    M - F = Home Work out in the morning video

    Those all virus, vitamin, and working out I have been tested for.

    Pretty much, I feel shit all day, my family members think I am useless, my wife thinks I am useless... I hate this feeling.

    Feel brain fog all day long.

    Yes, MRI is normal and negative and the neurologist can't find anything.

    I am starting to read alot of CFIDS, and I did notice that there is some strange virus or bacteria acting its way up, but mostly due to HHV 6 and CMV.

    I am starting to eliminate lot of foods I eat, junk, etc...

    I am starting to take Probitics, will that help with the gut ?

    Q: Do majority of you have HHV 6 & CMV or is it just me ?

    Q: Should I take probiotics ?

    Q: It seems like Fatigue is brought on more by exercising a lot ? Is it me or is this true for everyone ?

    Q: Are there more test I should check for ?

    Q: how is everyone else living, are you guys turning healthy again, feeling better ?

    I just want my life back, will I be able to live normal.

    I am sorry if I am asking way too many questions, but I just feel so lost and no one seems to understand me.

    Everyone including my wife & my family members think its all in the head.

    I am just hoping is nothing serious.

    No Soy Milk product or nothing, I been eating lot of carbs that i need to stop.

    My allergies have gone so bad. Over 2 weeks ago, I came down with Hay Fever and I still have not recover from it.

    [This Message was Edited on 08/09/2008]
  6. findmind

    findmind New Member

    I do highly suggest you go to the Dallas/FtWorth website and read Dr. Paul Cheney's "The Heart of the Matter", which is extremely long, but, I believe, extremely important.

    The one-mile running you do could be endangering your life, at worst, and your energy levels at best.

    Also, PhoenixRising site has a good article about viruses (under Research), and some good info about them and the immune system dysfunctions in ME/CFS.

    There are many avenues to wellness, or at least functionality; I believe the genetic research being done (also read about Dr. Kerr in the UK, here and on the web) may soon hold treatment options for us.

    Best wishes to you in your search for answers that fit you, specifically.

    Also, maybe your wife could read some of these posts; they may help her understand that you really do have a very serious, perhaps even life-threatening disease, not just the "yuppie flu".

  7. MrLund

    MrLund New Member


    I can only run 1 mile because that helps me alot..It gives me enough energy to do so much in life.. I can not run more than 1 mile a day. for instance, if I run 2 miles a day straight, then I will experience my CFIDS getting worse.

    Exercising little helps a lot.

    Am I taking the right vitamins ?

    Also, my Vitamin D level is low.

    I am so confused, my CFIDS M.D. Doc says that it's not bad enough for me to do marshal protocol or anything.

    he just mention that well check your blood and maintain it, thats it.

    He did ask me to do a Adernal Test, but never go to it...have no idea what this was ?

    How can I feel better, any vitamins, supplements i can try ??

  8. ladybugmandy

    ladybugmandy Member

    hi there. i am glad you can exercise because it means your CFS isnt that severe yet...but maybe you should stop...many specialists do not recommend it.

    if you tell me where you live, i will try my best to find a good doctor near you.

    i see. dr. a. martin lerner in michigan, who is very good.

    good luck

  9. Catseye

    Catseye Member

    Well, it doesn't sound like you're all that bad if you can run! I was completely bedridden for years. Now I can ride my bike. I think you probably may be able to get away with just guy dysbiosis treatment, provided all major infections are ruled out. As for the post exertional malaise and brain fog, the amino acids will help a lot and look at these threads of mine for help with PEM. I narrowed down the causes of it and these supps can help:

    Mitochondria's role in PEM (crash) and how you can reduce it

    oxygenated water and juicing for low oxygen levels, PEM etc.

    And here is a post I did back in Jan:

    Here's some good scientific and hard evidence for restoring mitochondrial function. Garth Nicholson seems to have excellent credentials and it is nicely explained. It appears to be 11 pages, but it's easy reading and there's not too much on each page. Plus pages 5-9 seem to be mostly references, anyway. Go all the way to the end, very interesting. Apparently, NT Factor and antioxidants are extremely important in restoring mitochondrial function. I'm going to up my doses of antioxidants and I'm still waiting to receive my order of NT Factor.

    Here's the first article I found by Professor Nicholson, but it's much harder to read, it's much more technical:

    This is very important to me because I think this is my last, remaining problem. I was thinking it was hormones and the hypothalamus, but I'm getting those under control and I still am getting too tired from activity so the only thing left is malfunctioning mitochondria, in my view.

    But don't jump on this stuff thinking it will help until you address everything else I've mentioned, like digestion, liver, endocrine system, etc. You can work on all systems at once, you really should, but don't work on just one or two systems at a time and then give up because you're not improving fast enough.

    I am confident that if mine can be restored, the NT Factor and increased antioxidants will do it. The science is there, and they even have studies to show it. And since I'm doing everything I possibly can for my body all the way around, I should respond at the high end. Who knows if everyone in the study has paid so much attention and given so much care to all their body's metabolic systems like I have? I'll be starting the NT Factor as soon as I get it and when I know it's working, you'll know.

    Mr Lund,

    you can read about mitochondria on various bodybuilding websites. And the Myhill article "Heart Disease Secondary to Mitochondrial Malfunction" should help immensely. Don't worry about heart disease, it talks about the body making energy.

    You just need to read up on all of this stuff and I think you can probably wipe it out before it gets too bad. I'm sure I could have wiped my own out if I knew back then what I know now. Try to find a good endocrinologist who is interested in what your cortisol levels are throughout the day, rather than just in the morning. You adrenal glands will be overworked when you push it and they may benefit from a small amount of hydrocortisone. Drlam has a good article about the adrenals on his website and I was able to get mine from hardly working to working too hard. I get I overdid it, but I'm still working on it. You need to give your body some things it's been starved for and you have to keep reading to figure out what they are.

    Probiotics may help but you have to wipe out the bad bacteria first. You should also give up all wheat and dairy. They are too hard to digest and can keep you from healing. When you have gut dysbiosis, you have to starve out the bad guys (bad bacteria and yeast) while killing the bad pathogens and trying to fix digestion all at the same time. It's a very complex system and just doing a bunch of general recommendations may or may not work. You could waste precious time and money like I did. That's the reason for the stool analysis. Once you have a clear picture of what is happening in there, and an expert to interpret results, you can have a clear plan formulated to heal it. Giving up wheat and dairy should also take care of the allergies. You'll have to start reading labels and avoid all things that have any form of dairy or wheat in them.

    You can search for why dairy and wheat are bad, it's a whole other long story, but they will prevent you from getting well, there's no way around it. Especially if you have allergies - that tells me that you aren't digesting well and partially digested food is making it's way into the bloodstream and causing your immune system to react in an exaggerated way. It may take days or weeks to get the wheat and dairy out of your system, so don't give them up for a day, start sneezing and then think it didn't do any good. You can't heal a messed up gut with the very things that can mess it up. Eat more veggies. When you're eating veggies, you're eating less carbs (which are feeding the bad bacteria and yeast in the guts) and you're getting more nutritious food in you. You really want to avoid all grains if possible.

    So no pizza, pasta, cereal, cheese, yogurt, ice cream, sandwiches, etc.

    The articles above will list lots of supplements you can try. The most important for energy are the mitochondria supplements and the antioxidant enzymes for the mitochondria. Go to the health food store and get a good multivitamin, don't get cheap, useless ones like Centrum. I like Alive Whole Food Energizer. You are probably low on minerals, too. A good mineral supp like Krebs Cycle Chelates will help. If you take magnesium, make sure it's magnesium glycinate, taurate or malate. Mag oxide is useless, it passes through you which is why they use it in laxatives.

    good luck


  10. gapsych

    gapsych New Member

    Welcome to the board. I think you will find lots of good information.

    However make sure you read up on all the different ways to help CFS/FM as there are many different theories about what works.

    What works for one person will not for another.

    I tend to go by what is pretty much proven by science.

    Definitely, find a rheumatologist. I think it would be a good start but sometimes with this DD it may take some time finding the right one. Also, with a lot of medications it can be trial and error. This is just the nature of the beast.

    Take care and keep us updated.

  11. kitteejo

    kitteejo Member


    The worst thing you can do is "push and crash". Most of us have learned that you must pace yourself. If you have a little energy don't go running a mile. You just "pushed your self and than crashed". I know it hard not to push yourself when you feel you can but it will only hurt you in the end.

    I only push myself when I feel it's worth two or three days in bed, like a wedding, family party, babysitting grand kids etc. These things will usually send me to bed.

    Sorry you got this at such a young age, you have a long road ahead of you however your young enough to hopefully see a cure some day for this awful illness.

    Others look at us and see a healthy person but inside we are fatigued and in pain. That's just the facts. You need to send away for books and booklets so she can read about this illness. Even after that some people still don't understand what we go through.

    Question for Sue; What city is Dr. Lerner in?

    Those on Probiotics, how many mg's do you take?

    Good luck Lund and come back everyday you'll get great advise here,

  12. MrLund

    MrLund New Member

    This is great information, more information than my CFIDS doc. What disease have many of you been checked for ? Are there any blood report that are specific ?

    The only things my doc request are CBC and normal stuff...

    Yes, that is correct, if I push my self than I will burn, but If I do mild work out, it feels great.

    I try my best to work hard and push, since I am so young people except more things.

    I wanted to go to Med School, but the brain fog and all the other illness I am having is making me hard to study and focus, I want to do so much in life, but it seems like everything is going down the hill.

    I will feel good one day and will have all the energy and positive thinking than one day I am so down that all I want to do is sit home and watch tv.

    It seems like I don't feel like doing anything.

    I don't know, but I tell my doc and he just says your fine..

    I am in AZ... I am already seen one of the CFIDS doc. Dr. Scott R.

    But, not much help.

    I feel so weak and fatigue. .. I have Probiotics from GNC the Vegetarian pills, I am taking 1 billion tablet a day...Should I take more..

    Good diet does help, still that doesn't give me the energy to do much.

    I don't have any pains, just fatigue and brain fog and lack of energy & motivation and feel so down.

    Should I see Infection Disease Doc ?

    Are there any disease that I should rule out than the one I mention ?

    I am thinking about seen another CFIDS doc but well see ?

    So far I seen 2 and all they say I am not that bad and I should just focus on life....How ????

    Sometimes I wonder how they even have their M.D. or N.D. certificates.

    Will I die early from this disease ? Will I have a heart attack ???

    Most doctors don't assume anything is wrong, if you go to internal med and they check your blood, they will say your healthy, but inside i am not .

    does this make any sense ?

  13. MrLund

    MrLund New Member

    Major complain is the Lazy Eyes, Feeling Sleepy, Front Lobe Headaches in the front of the head.

    If I try to study or do anything, I will start getting headaches and feel like closing my eyes. At this point I may have to lay down or just stop reading.

    What can cause this ?

    My eye exam is normal with my ophthalmologist.

    My neurologist says he has no idea and my MRI Is normal.

    Can someone tell me ?
  14. tennisnut

    tennisnut New Member

    As you are new to this disability and it is one, you may not know that exertion may be VERY bad for you, at this stage.

    You probably can not get your head around that, but I put myself through 2 years of ADDED misery and steroids, because I got complications from not stopping exercise.

    Therefore the exercise that you are doing can possibly be making you continuously worse.
  15. MrLund

    MrLund New Member

    I have stop running as of this week.. .no more running, but every time I felt bad when I run it made me feel good...

    Okay, so I will do normal home work out like P90 or some type of work out...

    Are there any secific disease I should be checked for ?
  16. binxi

    binxi New Member

    its important to get a proper diagnosis, but once you have one don't assume that your life is over. people on this board are here because they are sick and haven't yet recovered, but there are lots of people out there who have recovered. relax as much as you can now and improve your chances of a full recovery.
    i freaked out when i found out i had cfs but now when people hear i have it they tell me stories about people they've known who have recovered from it. if you get stressed about not getting better you will do yourself much more harm than good. i'm 29 and only been sick since november and feel that i'm already improving. there's no reason why you won't too.
    as for the early death thing, its early days to think about that! i have heard of people who have pushed themselves too hard physically then gone to bed and never woken up. its very rare, but more reason not to push yourself.
    just relax, take it easy, and try to stay positive- there's no reason you won't be well enough to study med soon and you can make us all better!
  17. Lichu3

    Lichu3 New Member

    keep track of how you feel over a few weeks when not exercising compared to when you are to see what effect exertion has on you. Physical overexertion can sometimes lead to cognitive problems (hence your cognitive symptoms may be realated to the exercise) and vice-versa.

    Also google for "Stanford" and "chronic fatigue syndrome" to read about antivirals for CFS. Note that in some cases, "inactive" infections as determined by common tests may actually be active when referring to HHV-6 and other herpes viruses.
  18. Jayna

    Jayna New Member

    You might feel great after running a mile (I used to) but two days later you may be nearly brainless, and exhausted to the point where opening your eyes is work, and have pain in all your major muscles.

    Some people have a 12-hour delay, or a 24-hour. Mine is 48 hours, and I met someone else on this board whose sickness became most acute 60 hours after his workout.

    Generally, upright aerobic exercise (like running) are the WORST for people with CFS. Walking is better, swimming is better yet (lying down position, less gravity on the joints), and stretching out in a Yoga routine is good for your whole body and probably won't trigger a crash in a fairly fit person.

    Get your energy output balanced with your daily energy production before you worry about drugs. There are no drugs that will give you back your 'normal' life until you've got your energy back in balance.
  19. MrLund

    MrLund New Member

    I thank everyone for there great support and inputs. I am really happy that I can get some answer.

    Yes, I have cut down on my running and other stuff, but someone how it made me breath better, umm...

    I started taking pro-biotics and I have been feeling sick , like extreme fatigue.. I don't know if this is Herx reaction or not.

    Today, I am feeling little better.

    For last 2 weeks I had Pretty bad allergies, like Hay fever, right know it seems like it has turned into Sinus Infection.

    My Voice is still messed up and I am still having symptoms , 3 weeks later.

    From What I read was that CFIDS people don't get sick much ?

    Are we proven to more allergies ?

    Is it hard for us to cure allergies or flu or something ?
  20. landra

    landra New Member

    I do not think so. And I don't think I have seen that anywhere. I have CFS and still get viruses (although with allergies and CFS it can be hard to tell).

    There is a thread on here called "does FMS protect people from getting colds?" The replies there seem to support that possibility.

    Many people with CFS also have allergies. I would guess that helps wear out our immune systems.

    If you think you have a sinus infection, you need to go to the doctor. Even people with CFISD can get infections, or bereak a leg, etc. so anything that would have sent you to the doctor before should send you to the doctor now.