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    Old 02-16-2005, 03:15 PM   #16
    CFD 333
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    Re: whats going on?

    From reading some of your descriptions of your illness, i have to say that my illness started and exists almost in the exact same way! About a year and half ago, I had a really bad faint spell at work one night...never felt anything like it in my life. At the time, I just figured it was the flu, I went home and suffered through it for about 10 days. One of the remarkable things I noted was that all the dizziness, faintness, weakness, and nausea and vomitting slowly but surely lifted in the next coming weeks. My anxiety remained behind though, but not as bad as it was during that period. I was really into weighlifting at the time so as soon as I thought I could handle it again, I started again. Little did I know that this was pretty much the end of me--after that workout session, I suffered a major relapse but this time, the symptoms never cleared. I continued working as long as I could but eventually had to stop...the anxiety, panic attacks, negative thoughts, faint spells, flu symptoms, terrible sleep, exercise intolerance, post-exertional malaise, brain fog, and poor memory has never left me since. There were times where I felt better...last spring and early summer...but it didn't last.

    Early on in the course of my illness, I was diagnosed as having Lyme Disease...ok, I thought, a few weeks of antibiotics and I'll be fine, right? Wrong! They immediately started me on IV Rocephin for six weeks....it did virtually nothing for me. I took Doxycycline after this for another six weeks...felt terrible the whole time I was on it....after stopping, I started feeling better and better...not great but better...It was also getting warmer at the time too...hmmmm...I'll tell you about my theory on that later. I relapsed after attempting allergy shots. I was diagnosed with really bad allergies but the shots must have caused havoc to my immune system because they caused a MAJOR flare that I never recovered from totally. Bad news...don't even think about trying them. I was eventually diagnosed with having Post Lyme Disease or Chronic Fatigue Syndrome after major depression was ruled out. They decided to not try or continue antibiotics again because it wouldn't help.

    Now, like I was describing before, I'm sure more than one of you has noticed that you feel much better in the warmer weather. I believe this has to do with the sunlight exposure. I've theorized that in the winter months, our body is producing excessive amounts of melatonin which is driving our serotonin levels really low causing increases in depression, anxiety, and other symptoms such as cold intolerance and oversleeping. I've done some research into Seasonal Affective Disorder and I believe that it may have a lot to do with it. The current treatment is Light therapy and/or antidepressant. I don't know about any of you, but I am extremely intolerant to antidepressants---they make me so sick and panicked even at a fraction of the total dose...completely unbearable. I'm going to try Light Therapy soon, hopefully it will help me...who knows...

    Anyway, I'm really curious about also trying thyroid replacement therapy (even though my blood work looked normal) or trying Provigil (a mild stimulant). I've heard people are having success with them...Anyone tried these?

    Last edited by CFD 333; 02-16-2005 at 03:18 PM.

     
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    Old 02-17-2005, 05:32 AM   #17
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    Re: whats going on?

    I wouldn't mess around with your hormones (Thyroid replacement therapy) if you don't have an existing problem. You would just be further unbalancing your system.

     
    Old 02-17-2005, 07:37 AM   #18
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    Re: whats going on?

    Peregrine - Yeah, I totally agree. I had some advice from a private doctor that I should take a trial of thyroxine as my TSH is slightly raised (but only if you take AACE's guidelines of 0.3-3.0). My GP and endo said that it wasn't necessary, so I've decided against for the time being, despite having all the symptoms of hypothyroidism. If my thyroid is beginning to fail then it'll carry on and in a few years the TSH will be out of range.

    The problem with taking thyroid replacement therapy when you don't need it, is that you run the risk of becoming hyperthyroid and get all the horrible things associated with that. I have been told that a very small amount of thyroxine if your TSH is high-normal, probably wouldn't cause hyper, but is it worth the risk???

    What I have found that's helped is CoQ10 - it's relieved me of the worst of my aches and pains. I used to struggle getting up in the morning, but don't have as severe aches as I used to. Definitely worth a try despite the expense.

    Last edited by kiya; 02-17-2005 at 07:37 AM.

     
    Old 02-23-2005, 11:03 AM   #19
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    Re: whats going on?

    I've heard of the Marshall Protocol but I'm not to thrilled about it. First of all, having elevated Vitamin D doesn't prove that the illness is somehow fed by it...That doesn't make sense to me. I've read a lot of the posts put up by patients on it and the results were mixed at best. Remember that the protocol involves extensive use of antibiotics so that is where the benefit, if any, may be noted. Sunlight has always helped me feel better and the warmer it is outside, the better I feel. If anything, my vitamin D levels may be lower than normal although I have no proof of that. The reason I mention Seasonal Affective Disorder is that depression and anxiety are very common in CFS/Fibro and having this disorder will only serve to compound the problem. I always noticed that I felt better in the warmer months my whole life. Now that I'm sick, it seems a whole lot more of a problem. It feels like as soon as it turns fall, someone has punched a hole in my gas tank and my enegry slowly leaks out until I'm wiped! Anyone who has this condition along with CFS/Fibro should certainly address it...it could mean the difference between staying home all day in bed and being able to work again.

     
    Old 02-24-2005, 09:17 PM   #20
    terrienne
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    Unhappy Re: whats going on? EBV ?

    HEY !

    ALSO, CHECK OUT " EPSTEIN BARR VIRUS " ! It can be detected by blood work.
    EBV can cause all kinds of conditions, and it attacks the immune system, and our organs.
    It's like anything else, I suppose, ' everybody is different ! '
    I have been sick since June of 04' !

    I did a post on this under ' Infectious Diseases ', as I am searching for answers myself.

    Good Luck........,
    Hope this helps,

    Gee Gee

     
    Old 02-26-2005, 07:20 PM   #21
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    Re: whats going on?

    Mletters, wow, your story really interested me! Its amazing to note that our illness is almost exactly the same, even right down to the intolerance of antidepressants! I know exactly what you mean when you say that you feel like you have brain damage...I've often thought that about myself sometimes even though my MRI looked completely normal. I'm very curious about how you can tolerate St. John's Wort with no problems. I haven't tried that yet, but I have tried things like Sam-e and fish oil and they all seem to make me feel just as bad as antidepressants do. I was about to give up with those kinds of meds or herbs but maybe now I will try that one though...you never know. What does it seem to do for you and at what doseage are you trying it at? Also, about the Bach Rescue Remedy, does that seem to work as well?

    I haven't tried a saliva cortisol test, but I heard that they are notoriously unreliable. I have done the AM Cortisol blood levels several times and they seem to be on the high end of normal, but nothing that concerned my doctors. I actually expected them to show up really low, but that wasn't the case at all. Also, my blood pressure runs a little high normal, so that helped rule out cortisol problems as well.

    I haven't tried the Light Box Therapy yet, but I'm pretty excited about it. I've often wondered why I am so much more tired and sick in the winter months and the lack of light must be the reason for it. With little light, melatonin levels get high and that serves to drive serotonin way too low. While using an antidepressant is good enough for most people, since we can't take them, light therapy is probably the way to go. My doctor also gave me a script for Provigil which is a mild stimulant. Hopefully that may help clear up the brain fog and fatigue some...I will let you know how it works for me.

    I'm glad I ran into you because this gives us both a great chance to compare notes and help each other out. Please, if you ever find anything that helps you, let me know because I could use all the help I can get. I will definately do the same for you...Thanks a million.

     
    Old 02-27-2005, 04:13 AM   #22
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    Re: whats going on?

    Hi'ya,

    No problem. I will share whatever works for me with you and the rest of the board. I think we need to help each other out WHATEVER way we can, since doctors don't seem to be interested. You get the usual 10 minutes of ranting (or forgetting what you were going to say) and then get stuck on some waiting list for more tests! Anyway, that's my rant over.....He-He!

    .... St John's wort took about two weeks to work for me. It's the BIOFORCE HYPERICUM COMPLEX. You take 30 drops, 3 times a day in some water. It costs around 7.99 for a 50ml bottle. Available in any good health shop.

    I am also taking batch rescue remedy for the anxiety/panic attacks. I just take 5 drops whenever needed.

    Recently, the dizziness has been pretty bad (not like a spinning vertigo, just wierd head sensations and forehead pressure), so I have been taking Betahistine Hydrocloride (2 x tablets) in the morning. This really settles the dizziness down. Granted it isn't curing the problem but at least it's letting me live a little.

    At the moment, I'm just concentrating on work (still working full time as a computer analyst) and home life. Any social life is out of the window at the moment till I get better?

    My routine in the morning is, St.John's Wort, Half a glass of water with half a tablespoon of sea salt, pro-biotic drink, high EPA fish-oil (morEpa), adrenal suppliment tablet, and source of life (energy greens drink with B vitamins - for energy). Then, I juice some carrots every morning religiously. Then, it's a good breakfast of high protein (Eggs etc.). I avoid all Coffee, Tea, Carbonated drinks, anything with sugar and processed foods. I think it does help!

    Hope this is of some help.

    My next appointments are Neurologist in March and Vestibular function testing next week. I'll let you know how I get on.

    Just a couple of questions.....

    1. Do you feel allright when you first get up in the morning, then does the dizziness start 30-60 minutes later or is it always there?

    2. Does the back of your head and/or neck hurt or feel strange?

    3. Do you wake up early in the morning with racing nonsense thoughts?

    4. Do you bump into door posts and find you're more clumsy than normal?

    5. have you got bad short term memory loss?

    Take care,

    Mike.

     
    Old 02-27-2005, 05:11 AM   #23
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    Re: whats going on?

    Quote:
    Originally Posted by mletters

    .... St John's wort took about two weeks to work for me. It's the BIOFORCE HYPERICUM COMPLEX. You take 30 drops, 3 times a day in some water. It costs around 7.99 for a 50ml bottle. Available in any good health shop.
    Just a word of caution. St. John's wort is not right for everyone. It makes me (and everyone else I know who has CFIDS) feel worse, kind of a weird feeling as if it is doing the opposite of what it's supposed to do. Vitamins and herbs are not "one size fits all". I'm glad it works for you, but in the end, I think it's so important to listen to our bodies.

     
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