New to forum and need to now where to start

Discussion in 'Fibromyalgia Main Forum' started by melissaz, Feb 12, 2007.

  1. melissaz

    melissaz New Member

    I was diagnosed with CEBV over two years ago, and within 6 months was diagnosed with CFS. I have been working with my primary care doctor, but am not sure where to go from here. I have yet to see any improvement in the past 2 years, sometimes sleeping up to 60 hours without a break!
    I have an appt. with my GYN to test my hormones, which I assume would include testing the Adrenals. Could any of this be a cause of severe water retention?
    Between the exhaustion, the glands, hormones, aches and pains, and fluid retention, I feel like a walking complaint!
    Does anyone have a suggestion as to where I may start next? Any advice is welcomed! I am a bit afraid of trying any vitamins or herbs until I know that everything else has been checked.
    Thanks!!
    [This Message was Edited on 02/12/2007]
  2. melissaz

    melissaz New Member

    If this even helps, I live in KY, not sure if there are any good docs!!
  3. findmind

    findmind New Member

    welcome to our party! LOL

    Well, I'd look at the postings by the people on Valcyte...it seems to work well on the CMV patients. See is you can get your PCP to decide if that is ok for you to try.

    I'd also check out the products on this site for your specific problems.

    Hope you find a plan that works well for you and you recover soon.

    There's always hope!
    findmind
  4. chopindog

    chopindog New Member

    Welcome to the board! I am sure you will get more replies tomorow!Just a warnig I had a rough day STRESS!!!! And it is now past 2am, and I am like you, I sleep all the time now and I am getting really tired!

    My best advice is to educate yourself as much as possible. This sight is full of info and is always up to date in the latest findings, plus lots of general info.

    The CDC now has a great site for cfs, and this info is much more respected by doctors. try to find doctors who at least believe in the disease and who are also willing to learn more, and resd info you bring them. And stay far away from the ignorant jerks who are not willing to learn anything new at all!!!!!!!!

    Well i can barely see the letters on the keys anymore. Good luck!!! And one last thing, use this webboard. It not only keeps you sane from not feeling like your completely alone, but the people on this webboard are very informed and extremely helpfull. Just yell help and people will come running!

    Love, Joy
  5. melissaz

    melissaz New Member

    Can my MD prescribe the Valcyte? It seems like everyone on the forum is seeing a select few docs?? I am more than happy to bring him everything to help research this, as he does his best to do a lot of this for me. Do you know if insurance covers this?
  6. TwinMa

    TwinMa New Member

    I think improving diet is key. It doesn't need to be a complete overhaul overnight, but work toward improving it.

    Cut down on sugary stuff. Cut down on processed food. Eliminate soda pop. Eat more fruits and veggies.

    Try the Shake posted by Stormyskye. It's a wonderful natural start because it's just food. It can help propel you into a world of eating better. The details of it can be found on her thread called "My Road to Remission". The basic five ingredients are apple, molasses, whey protein, almonds and flax seed. I've been eating it every morning for a year and a half, and I really believe it helped me start down the right path toward feeling better.

    Take probiotics. They are just beneficial bacteria to help rebuild your gut. There is a ton of info on this board about them.

    Read, read, read. There is a wealth of information on this board. You will start to see things that ring true for YOU. Each of us has to determine their own path, and self-education is the way to find out what is going to work for YOU. Good luck!
  7. pearls

    pearls New Member

    Well, you are not alone. We are all "walking complaints."

    We are not all seeing a few select doctors. We are from all over the United States, England and some from other places, as well. There are some centers where there are doctors doing research and so forth, but as for me, I live out in the country and have to travel about 35 miles to see my pain management specialist in a medium-sized city.

    Taking a good multi-vitamin will not hurt you in any way. I'd start there. This is very important!

    Try to do some kind of gentle exercise each day, even if it is only walking around the house at first.

    Sleeping 60 hours is certainly not normal, especially when you are exhausted all the time. It seems to me you are not getting deep, restorative sleep. Getting past the dreaming state and into the delta stage is important because that's the stage where your body heals itself. You need to ask for help for that, perhaps a sleep study.

    Also, learn all you can about this disease. This site is excellent. There are good articles to read, a wonderful email newsletter if you care to subscribe (it's free), and a lot of very caring people here.

    Pearl S.
    [This Message was Edited on 02/14/2007]
  8. findmind

    findmind New Member

    Ditto to everything you said...

    Double ditto!

    findmind
  9. melissaz

    melissaz New Member

    Thanks to all who responded, and post info that I can research! After 2 years of this, I finally just got fed up. I have decided to try to be more proactive after realizing that I was robbed of my late twenties, single, and can't work! It just took me a long time to accept the disease, and figured that I would have got better by now.

    I have seen my general doc, a rheumatologist, infectious disease, ENT, and my OB/GYN during this time. Is there someone else I should be seeing, that could possibly be a bit more helpful? My regular doc has been great, and very supportive, but for my condition, I don't think that a regular MD could ever be alloted the time that I need. He has stretched as far as to give me over 1 1/2 hrs. on a visit, but can't do this everytime. Suggestions would be great!
  10. Slayadragon

    Slayadragon New Member

    Try reading "From Fatigued to Fantastic" by Dr. Teitelbaum.

    The name of the book is very silly. The stuff in it will not get you to "fantastic."

    I will give you a good introduction to issues to consider in treating it.

    Once you know what issues might be problems for you, you can try to find doctors to treat it.

    There are very few doctors (mine is one) who know about a wide variety of issues regarding CFS at present. Perhaps there will be more in the future though.

    In the meantime, understanding the disease yourself rather than relying on doctors to help you figure it out is pretty much the only way you're going to get anywhere.

    Best, Lisa

  11. melissaz

    melissaz New Member

    Off hand, I would not be able to tell you exactly every test that has been run. The rheumatologist took about 30 vials of blood and told me the worst thing that could happen, is if nothing came up in the blood work. Of course, nothing came up! But, that visit was about a year and a half ago. I do know that my MD has tested me many many times for EBV, kidney functions (including the 24 hour urine sample), thyroid, arthritis, and Lyme disease. He has requested that I ask my GYN to test my hormones, in search of maybe that being an underlying cause. I see the GYN next week for the tests, but I don't even know what the hormone testing entails. I do have endometriosis, and went through Lupron therapy, and it does seem as if the fluid retention worsened when the estrogen started coming back, but it is hard to say since the estrogen gradually came back after the Lupron therapy. I am sure that there are probably hundreds of other tests he has run that I did not even know about.