Fireman Needs Help

Discussion in 'Fibromyalgia Main Forum' started by fireman1000, Oct 20, 2005.

  1. fireman1000

    fireman1000 New Member

    I'm a 45 yr old firefighter who had a very severe chronic infection that led to mastoiditis and surgery followed by weeks of daily IV antibiotics. I felt tired all last winter and the infection started in Feb and was extreme in April. I've been out of work since the end of April. I started to improve in August but started having aches and pains and soon afterward, chronic fatigue. It's like the worst case of flu I've ever had X 10. I'm seeing an alternative doc now and he checked and I do have an active Epstein Barr virus and he's trying chelation therapy. I do see a little improvement, but I'm getting very discouraged and have no quality of life at the moment. I'm open to any suggestions and I live in TN if anyone can suggest any doctors or centers. I've also taken every supplement I've read about with hardly any improvement.
    Thanks
  2. goaska29

    goaska29 New Member

    Fireman-

    You should check out www.fibroandfatigue.com. I have my first appt at the Philly FFC on Tues. You can also search FFC on these boards, lots of people have tried them out.

    GoAskAlice
  3. JLH

    JLH New Member

    I really can't help you, but I'm sure someone will be able to.

    Here is some info that I copied from an old post for you about CFS:

    -----

    Self treating is a trial and error method. Some of us have done really well with it, others, not so much.

    If you are taking medications you should always check to see if there are any supplement/herb/drug interactions. Here is one site with information....

    http://www.umm.edu/altmed/

    Herbs and supplements can cause herxing, side effects, and you need to research them before you take them. Sometimes when asked for suggestions, I hesitate, knowing that I'm not all that familiar with each persons particular situation, symptoms, med use, diet, etc.

    I can well remember first reading about cognitive difficulties. I wasn't even aware of that as being a symptom and had to really look at myself to realize just how bad it was. My focus was the pain and fatigue. I realized I had ignored a multitude of symptoms for years. Assessing the full extent of my symptoms became very important. I suggest everyone else do the same.

    CFIDS checklists

    CHECKLIST OF CFIDS SYMPTOMS


    MOST COMMON SYMPTOMS

    * Exhaustion, made worse by physical exercise (100%)

    * Low-grade fever in early stages (60-95%)

    * Recurrent flu-like illness (75%)

    * Frequent pharyngitis (50-75%) (sore throats)

    * Joint and muscle pain (65%)

    * Severe muscle weakness (40-70%)

    * Stiffness (50-60%)

    * Post-exertional fatigue & flu-like symptoms (50-60%)

    * Multiple sensitivities to medicines, foods, and chemicals (40-60%)

    * Severe nasal & other allergies (40-60%) (often worsening of previous mild allergies)

    * Frequently recurring, difficult to treat respiratory infections (40-60%)

    * Dyspnea on exertion (labored breathing or hunger for air)

    * Painful lymph nodes (30-40%) (especially on neck and under arms)



    NEUROLOGICAL SYMPTOMS

    * Sleep disorders & unrefreshed sleep (50-90%)

    * Headaches (35-85%)

    * Visual blurring (50-60%)

    * Intolerance of bright lights

    * Parasthesias (30-50%) (numbness or tingling feelings)

    * Dizziness/Light-headedness (30-50%)

    * Ringing in the ears


    NEUROCOGNITIVE SYMPTOMS

    * Impaired cognition (50-85%)

    * Attentional difficulties

    * Calculation difficulties

    * Memory disturbance

    * Spatial disorientation

    * Saying the wrong word



    OTHER SYMPTOMS

    * Worsening of premenstrual symptoms (70% of women)

    * Nocturia (50-60%) (excessive urination during the night)

    * Tachycardia (40-50%) (abnormal rapid heart action)

    * Chest pain (25-40%)

    * Cough (30-40%)

    * Weight gain (50-70%)

    * Nausea, especially in earlier stages (50-60%)

    * Diarrhea, intestinal gas or irritable bowel (50%)

    * Intolerance of alcohol

    * Night sweats (30-50%)

    * Dry eyes (30-40%)

    * Dry mouth (30-40%)

    * Rash (30-40%)

    * Frequent canker sores (30-40%)

    * Herpes simplex or shingles (20%)

    * Symptoms worsened by extremes in temperature


    Here's another

    The numbers in parentheses are the percentage of CFIDS patients who experience those symptoms.

    Fatigue (100%) - usually made worse by physical exertion

    Cognitive function problems (80%)
    - attention deficit disorder
    - calculation difficulties
    - memory disturbance
    - spatial disorientation
    - frequently saying the wrong word

    Psychological problems (80%)
    - depression
    - anxiety
    - personality changes, usually a worsening of a previously mild tendency
    - emotional lability (mood swings)

    psychosis (1%)

    Other nervous system problems (100%)
    - sleep disturbance
    - headaches
    - changes in visual acuity
    - seizures
    - numb or tingling feelings
    - disequilibrium
    - lightheadedness (feeling "spaced out")
    - frequent and unusual nightmares
    - difficulty moving your tongue to speak
    - ringing in ears
    - paralysis
    - severe muscle weakness
    - blackouts
    - intolerance of bright lights
    - intolerance of alcohol
    - alteration of taste, smell, hearing
    - non-restorative sleep
    - decreased libido
    - twitching muscles ("benign fasciculations")

    Recurrent flu-like illnesses (75%) - often with chronic sore throat

    Painful lymph nodes - especially on sides of neck and under the arms(60%)

    Severe nasal and other allergies - often worsening of previous mild problems (40%)

    Weight changes - usually gain (70%)

    Muscle and joint aches with tender "trigger points" or Fibromyalgia(65%)

    Abdominal pain, diarrhea, nausea, intestinal gas "irritable bowel syndrome (50%)

    Low grade fevers or feeling hot often (70%)

    Night sweats (40%)

    Heart palpitations (40%)

    Severe premenstrual syndrome - PMS (70% of women)

    Rash of herpes simplex or shingles (20%)

    Uncomfortable or recurrent urination - pain in prostat (20%)

    Other symptoms:
    - rashes
    - hair loss
    - impotence
    - chest pain
    - dry eyes and mouth
    - cough
    - TMJ syndrome
    - mitral valve prolapse
    - frequent canker sores
    - cold hands and feet
    - serious rhythm disturbances of the heart
    - carpal tunnel syndrome
    - pyriform muscle syndrome causing sciatica
    - thyroid inflammation
    - various cancers (a rare occurrence)
    - periodontal (gum) disease
    - endometriosis
    - easily getting out of breath ("dyspnea on exertion")
    - symptoms worsened by extremes of temperature
    - multiple sensitivities to medicines, food, and other substances

    The FMS check list is just as extensive. So is Lyme, GWI, Candida, and a multitude of other illnesses. The symptoms overlap.

    Testing is an important factor. Keep in mind that some tests don't measure things very accurately. You do need to rule out things like Chiari Malformation, etc.

    There is an extensive library here at this site with more information that you can possibly swallow in a year. But give it a try.

    Learn how your body works. It's all connected. If the "gut" doesn't work properly, then a lot of other things aren't going to work right either. Likewise, if the adrenal glands, or thyroid, or liver, or hormones, or pituitary, or colon, or...or..or.. you get the idea. If any one part is not working properly, there is a domino effect, and systems start to fail. Each part is dependant on another part in order to function properly.

    No two people have exactly the same symptoms. What works for one may not work for another. So much depends on what exactly is happening in your body. If there are viruses running rampant, your treatment may be different that someone who seems to have FMS but may really just have a bad case of candida. (I considered that for myself for awhile. Turned out to not be the case.)

    There is hope. For all of us. Together we are learning so much about how it all works. Someone here is trying most everything. From difficult protocols to the very simple. Ask lots of questions. That helps all of us learn.
  4. Grandma6

    Grandma6 New Member

    Hello,
    My hubby is the Fire Chief of our Volunteer Fire Dpt. and he has active Epstein Barr also. A few months ago we thought there was something terrible wrong with him and until all the lab work was back we were very worried. When the diagnoised came back Epstein Barr we did all kinds of research on it and were shocked how many people have it yet we had never heard of it. He missed 2 full weeks of work and for him this is rare.

    What our doctor did for him and said that there really wasn't anything else to do is to load him up on vitamins. He was taking 3000mg of VIT-C, 100mg Zinc suppplement, 100mg Selenium, Calicum pills, and a multi vitamin. It has taken him a long time to get his strenght back but he is still not back 100% and we have know idea when he will be 100% better. Everything we've read about Epstein Barr is that it lays dormaint in 90% of the population and then when it flares up it knocks you off your block. My hubby is a healthy man and I have never seen him as drug out as he was with this.

    The only thing I can tell you is to be patient because it takes a very long time to get back to your old self. I wish you luck and I will keep you in my prayers.

    Grandma6
  5. fireman1000

    fireman1000 New Member

    I have tried every herb and supplement that I know of but nothing seems to be working. I have 90% of every symptom of CF but it feels like I'm fighting the worst infection I've ever had in my life. I had rocky mountain spotted fever over 20 yrs ago and almost died with it, but that was a piece of cake compared to this. It just lingers and lingers and I don't see any improvement.
    Thanks
  6. Grandma6

    Grandma6 New Member

    If you haven't already, you might want to go into the internet and do research on Epstein Barr. We found it very informative. What is strang, my 7 year old grand-daughter was sick a couple of months ago and they couldn't find out for a while what was going on so they ran lots of test and one of the test showed that at one time she has had Epstein Barr but it is laying dormant at this time. By the way, what they finally found out that she had is called Cat Scratch Fever, which we had never heard of but did research and learned more about it. She is fine now but we thought it interesting that at 7 she already has the Epstein Barr in her system.

    It's a really strang virus and now that we have been through it, we are finding more and more people that say they have had it.

    I know my husband is still not up to his old self and I had never seen anything knock him down like that stuff did. I've always been the sick one and he has always been as healthy as a horse. We were lucky because his bosses wife had Epstien Barr and he said that she had a 2nd flare up of it so he was very understanding. The doctor told us that it can take up to a year to ever get back to normal with it.

    I can't imagine how hard it has hit you since you already have ailments.

    Good Luck to you and I'll keep you in my prayers,
    Grandma6
  7. pumpkinpatch

    pumpkinpatch New Member

    I can understand how discouraging this can be. I also have tried lots of herbs, lotions and potions with no real improvements.

    I decided to visit a Fibro and Fatigue center and they took blood tests and found many underlying problems including infections. You might want to visit the website or phone the toll free number.

    Some of the infectious components they test for are EBV, CMV, herpes HHV6, mycoplasma, chlamydia pneu, lyme, ehrlichlia, candida,toxins. They also address your immune system and hormones.



  8. fireman1000

    fireman1000 New Member

    I was also a diver and I picked up a fungal infection a few years ago in my ears and took months to finally find a doc to help it. I think that may what part of my mastoidits was caused from. I may not have gotten completely over it. I live in southern middle TN and work at an AFB in middle tn. I was tested for lyme and have 99% of the symptoms for it, but the results were negative and I tried a months worth of antibiotics with no results. Does anybody know of a GREAT immune system builder because my body won't heal. I still have a hole in my ear drum from the original mastoid surgery that has been patched and won't heal and was told I'll need another surgery next month for it. I had an injection of phenergram that took over 6 weeks to stop aching as if I had just received it. I've done a lot of research on Epstein Barr virus and the doc told me 85% of all people have antibodies for it but it isn't active. My blood work shows that mine is active which I was told is similar to having adult mono but I can't see the light at the end of the tunnel and kind of feel as if I'm going backwards. I'm taking something called monolauren and cat's claw which is suppose to build up the immune system but I can't see any difference. I'm also taking several other supplements but haven't found that "magic" one yet.
    Thanks,
    Kenneth
    Thanks
  9. fireman1000

    fireman1000 New Member

    I went to web site and found the product but could only find the liquid and not powder. Am I doing something wrong?
    Thank-you
  10. fireman1000

    fireman1000 New Member

    Thanks for the web site info. I finally found it and ordered it.
    Thanks again!
  11. gramaT

    gramaT New Member

    I'm so sorry you are having to go through such a hard time. It may just take time to get over it. Keep researching and it seems like Duke and the Doctor.com has something for immune. She also suggests taking a good probiotic like Healthy Trinity from the health food store.

    Prayers for your health

    Carolyn