Could I have CFS?? Or FM? Please respond

Discussion in 'Fibromyalgia Main Forum' started by angiecw71, Aug 30, 2006.

  1. angiecw71

    angiecw71 New Member

    I have been sick continuosly for over a year. I have been on antibiotics continuously. I keep having sinus infections, ear infections, and bronchitus. I even had surgery in December for my ears and in April for all my sinus cavities. I have had an infection in my sinuses since my sinus surgery. My PCP sent me to an infectious disease doctor and I just finished up four weeks of IV antibiotics at home. Guess what, was off antibiotics for one week and have two ear infections my sinus are still completely swelled shut and now have developed a polyp in my ethmoid sinus. I stay tired all the time never feel good and I never want to get out of the bed. I can't even go to the grocery store or anything I don't have the energy to walk through the store. I used to love to shop, but now I don't even go in the stores just can't do it. Plus my back is hurting all the time. I heard somewear that CFS patient has recurring infections. Has anyone heard of this? I haven't been diagnosed with CFS or FM, but I mentioned to my doctor does she think I could have it she said it is possible, but right now she is too concerned with all the infections and my liver enzymes being so high. I am 35 yrs. old. Does anyone think that it might be CFS or FM?? I am constantly back and forth from my PCP, Infectious Disease, and ENT doctor and I am not responding very well to meds.. Any info out there???

    God Bless,
    Angie
  2. purplepooh

    purplepooh New Member

    I'm not to sure if you do have it? I feel you should go see a doctor to be on the safe side.

    Good Luck,
    meli
  3. Noahvale

    Noahvale New Member

    Angie,

    You poor thing! You really sound like you have been put thru the ringer! The only advise I can give you is to keep on your doctor about your symptoms. Have you researched CFS or FM? There are wonderful Web sites that have oodles of information out there that may be of some help to you. in the mean time..get yourself well. It sounds like rest is what you need. My Heart goes out to you, Take Care!

    God Bless, and Let us all know how your doing.

    P.S. -- If your doctor keeps giving you the run around, get a second opinion. It never hurts to get someone elses view on your health.

    noahvale--Kathy
  4. angiecw71

    angiecw71 New Member

    Thanks, I will continue to ask my doctors about it. I am currently seeing 4 doctors, surely one of them might be able to investigate it further, they just keep focusing on the infections etc. I just think that it could be that I have CFS. I will have to tell them to focus on my questions. I got to my infectious disease doctor tomorrow and I will ask him. Does anyone have some additional websites that can give me some more info.

    Thanks for your replies,
    God Bless,
    Angie
  5. sueliza

    sueliza New Member

    I am sorry you are going through all of this, what a nightmare. I agree with Kathy you need to keep on your doctor's to get to the bottom of this.

    Have any of your doctors mentioned mold and/or allergies? I had constant sinus infections and a headache that literally lasted a year in my twenties. The doctors couldn't figure out what was wrong. It turned out the wall I worked up against was completely covered in mold on the other side.

    Keep doing research like you are doing and working with your doctors. I hope you recover soon! :)
  6. angiecw71

    angiecw71 New Member

    Thanks so much for the info and the advice. I have taken every antibiotic on the market including erythromcin, clydimiacin, (I think I spelled it right)that is why they went to the IV therapy. Still no success. They are even talking about doing surgery again. I don't want to have surgery again on my sinuses since the one in April just triggered another major infection. What is that thing you said you wear around your neck I have never heard of it. I do know that my infectious disease doctor said that I should avoid smoke, crowds, and sick people. Could you please explain more about that hmmm, what did you call it ionizer?? Can't remember. I have applied for disability because I am not any longer able to work, I can't even sit up for long without having to go to bed, I am soo tired. My doctors tell me that it is prob. from all the infections but it may be CFS or FM. But they are not worried about that right now that they just want ot get rid of all the infections. I am going to ask more questions and see what they say. Oh yeah I forgot to mention that because of all the antibiotics I constantly have a yeast infection. I also developed a serious stomach infection that came from the toxins from all the antibiotics I am on an another antibiotic for that the stomach infection is called c-diff.

    Thanks again,
    God Bless,
    Angie
    [This Message was Edited on 08/30/2006]
  7. charlenef

    charlenef New Member

    im sorry to hear your not feeling so well.in stead of antibiotics did you ever think of trying probiotics they build your system up where antibiotics break it down it might be worth looking it to. good luck charlene
  8. smalone

    smalone New Member

    I went to the Mayo Clinic regarding reoccuring sinus infections and CFS. They said you cannot clear up a sinus infection with 7 - 10 days worth of antibiotics. You must stay on the anti. for at least 4-6 weeks to kill the infeciton out completely. They gave me the antibiotic Levaquin which is the only thing that every cleared my sinus infections up. They also gave me a shot for the inflammation in my sinuses. After that, I didn't have another sinus infection for about 10 months.
  9. angiecw71

    angiecw71 New Member

    Thank you prickles for all the info you have given me. I do believe I would benefit for the ionizer. Also any info. you can give me would be appreciated. I thank you all for responding to my post. This is to charlenf, I have recently been to an infectious disease doctor who did blood test to check I my immune system and found out that my IGg levels are low, your IGG level is the most important Ig level for fighting infections. He put me on IV antibiotics at home for 4 weeks and I am still sick. He said that I might have to have IVIG therapy once a month for the rest of my life and that builds up my antibodies to help me fight infections since mine is low. It is very expensive though approx. $3,000.00 each time which would be once a month. He gave me a pneumonia vac. and in 6 weeks he has to do blood work to see if my body responded the way it was suppose to from the shot and that determines whether or not I produce those type of antibodys. If my body does produce the antibodies then I would not benefit from IVIG therapy. If my body does not then I would benefit from it. I asked what if my body does produce those antibodies, he doesn't know what we will do considering that my IGG level is low. I told him oh no, does that mean I am going to stay sick the rest of my life??? He looked at me and said well lets cross that bridge when we get to it. He is a nice doctor, he knows how upset I have been from being sick all the time, he has seen be break down right there in his offic. So I think he didn't want me to know that he didn't know what to do next. But I know what he meant by well lets cross that bridge when we get to it. I was suppose to go back to see him today, but I rescheduled. So I go back Sept. 19,I am thinking I should have went, but that tropical storm Ernesto is bringing a lot of rain here in NC today and I hate drivning in the rain since he is 40 minutes from me.
    I want to thank you all for responding to my post. Has anybody else ever known anybody with low IGG which is called hypogammaglobulemia??

    Thanks,
    Angie
  10. angiecw71

    angiecw71 New Member

    Thanks for responding to my post, I have been on every antibiotic you could imagine. For weeks at a time and right in the middle of a cylcle of antibiotics develope a new or more serious infection. Even just finished IV antibiotics for 4 weeks and one week later last week had 2 ear infections again and the same old same old with the sinuses. I have even been on prednisone for months at a time and they finally weened me off of those because they weren't working either. It is because of all the antibotics that I developed C-diff a serious stomach infection caused by the toxins from the antibiotics. Thank you for your suggestion, but I have tried that...Ugh!! It is frustrating.

    Thanks Angie
  11. carebelle

    carebelle New Member

    Angie This is all terrible for you.
    Read my post today that says EVERYONE NEEDS TO READ THIS
    go to those web sites and read you may want to print for your doctors information that can help them decide if you do have CFS.
    Good luck and I guess if they are not helping you find new doctors with a fresh look at your health problems may be the best thing to try.
  12. angiecw71

    angiecw71 New Member

    Thank you carebelle, I really apprecitate you responding to my post. If my doctors don't pay attention soon to what I think are CFS soon I will be going to another dr. I am going right now to look at your post.

    Thanks,
    Angie
  13. Leaknits

    Leaknits New Member

    Has your dr ordered blood tests for Epstein-Barr Virus?

    A "positive" result to the EBV test can mean you have CFS. On the other hand, the positive result could also mean that at some time in your life you were exposed to EBV and your body has built up antibodies to it.

    Confusing? You bet. And no fun at all to try to muddle through, if you are feeling as brainfogged as some of us get because of CFS/FMS.

    Has dr tested you for Mono? Just like EBV, a lot of people have been exposed to Mono and might be carrying around the antibodies to it.

    I'm sorry to read your saying you are not responding very well to meds...that, too, happens to a lot of us. MY THEORY, ONLY, NOT MEDICAL OPINION, I'M NOT A DR: People with CFS/FMS can be chemically quirky and that can create odd responses or reactions to meds.

    Angie, a favor, please? Could you break up your posts into paragraphs? Lots of us have trouble getting through un-paragrahed messages. It's a cognitive thing. Thanks!!
    Lea.
  14. angiecw71

    angiecw71 New Member

    Hmm, I have never heard of EBV, I will mention that to my doctor, they sure don't mind taking my blood every time I go to check a bunch of other stuff. I will definitely right that down to ask him when I go. I tend to forget alot. So I take a list of what I need to ask or what I want to know.

    I definitely don't mind breaking my post into paragraphs. I will also ask him to check for Mono virus too. At this point I am willing to have them check anything. I am sick and tired, of being sick and tired.

    I am sure you all uderstand what I mean. Thanks for responding to my post.

    Thanks
    Angie