Add me to the list...20 yrs ltr.

Discussion in 'Lyme Disease Archives' started by gypsysoul, Jun 8, 2009.

  1. gypsysoul

    gypsysoul New Member

    Dr just called.....I have Lyme. Test was positive.

    I have been told......It's FM
    It's all in my head
    My brain chemicals aren't right......etc

    I have lost a marriage, the respect of many people, (because they thought I just might be mental after all) and I was just plain lazy. Because how could I look so good and claim to be so sick?

    Now I just feel afraid, I don't even care to say I told you so....
    [This Message was Edited on 06/08/2009]
  2. Nanie46

    Nanie46 Moderator

    Hi gypsysoul.....

    I am going to copy my answer to you that I posted on the FMS/CFS board......

    I understand how you feel.

    I had a FMS diagnosis for 21 years before discovering the cause of my symptoms is the bacterial infection, borrelia, burgdorferi....lyme.

    Many people here have also discovered the same thing...their names can be found on a post on the lyme board.

    The best thing you can do is educate yourself about lyme and associated coinfections that many people also have.

    I am glad you are getting answers, since you can't really recover until you know the cause of the illness.....and that is what is so frustrating about being labeled with FMS or CFS....they always say there is "no known cause".

    I find that to be aggrevating since everything has a cause.

    Lyme can cause a fibromyalgia syndrome or a chronic fatigue syndrome.

    I urge you to post on the lyme board and also go to lymenet.org.

    Lymenet.org is a very busy lyme board with lots of intelligent people who will support you.

    You can go to lymenet.org....click on flash discussion....sign up for free like you did here....click on the Medical Questions board...then create a new post.

    Most people with lyme cannot read long paragraphs where the words seem to run together, so break up posts there with only 1 or 2 sentences per paragraph.

    It takes a good lyme literate MD (LLMD) to really treat lyme properly and to evaluate for associated coinfections like babesia, bartonella and ehrlichia, among others.

    I am glad to see that your Dr is talking about Rx for 6 months, however, it takes long term combination antibiotic therapy and treating coinfections too....plus addressing adrenal and other hormone issues.

    Many people with chronic lyme have to treat for 1-2+ years. It is possible to relapse later.

    It is also important to follow a special diet...gluten free, dairy free, sugar free, no sugar substitutes except stevia, no soy....no allergenic foods.....high protein, low carbs...no processed food.......candida diet.

    When taking antibiotics, it is necessary to take alot of high quality refrigerated probiotics at least 2-3 hrs after the antibiotics. Also many supplements are helpful. Fish oil is very important.

    Supps with magnesium, calcium, iron, etc, which many do contain, should be taken at least 2 hrs away from antibiotics.

    Getting a blood test in a month will not show that you are "cured", but your Dr could misinterpret it and tell you that...only to have symptoms return.

    Chances are that one month of antibiotics are not enough for you to notice any difference in symptoms......it takes a very long time....and many people take 2-3 antibiotics and antimalarials at once.

    I will add some links here with very important info for you to read.......


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    http://www.ilads.org/files/ILADS_Guidelines.pdf


    http://www.ilads.org/insurance.html



    I can be found on lymenet.org as Dekrator48.....hope to see you there...it's a great site.




  3. jarjar

    jarjar New Member

    gypsy

    I was in the same boat as you time wise, marriage wise etc. I was one of the first people on this board several years ago that started encouraging people to not accept a cfs/fm diagnosis and go get an igenex western blot. I felt that was one thing I could do was to help people not sit there the rest of their life thinking they could do nothing to get better.

    The more I posted encouraging people to get the test it seemed the more people started popping up and finding out they had lyme also. I eventually stopped as I saw others picking up my banner and encouraging people to get properly tested.

    I am seeing some great results from the Marshall Protocol and sometimes I have to pinch myself that I feel as well as I do. Hopefully within a year I will be in remission. Cautiously optimistic on my part. I don't suggest the MP as a first treatment as it is difficult to stay on depending on your lifestyle.

    You have been given some good information above. I'm so glad you got the correct diagnosis.
  4. munch1958

    munch1958 Member

    I got bit by a tick in 1969. Then again in 1974. And again in 2001. These are the bites that I know about -- there could have been even more of them. I didn't get any testing or a diagnosis for 37 years. I started Lyme treatment in May 2006 after a lifetime of poor health.

    All of my tests are NEGATIVE which happens to 55% of those with chronic Lyme. For this reason, I now think everyone should use the ILADS point system to asses their risk (see below). I scored 12 points. If they had done a biopsy on my childhood hand rash (I now believe it was ACA) then I'd have 19 points.

    During a trip to the Ozarks (highly endemic) in August 1969, I was bit by some ticks. We were in Arkansas visiting my uncle (by marriage) brother's farm. I was wading thru some weeds or grass that was taller than I was when the dirty deed was done. I came home very sick from this trip with a flu like illness.

    I've seen roughly 209 doctors for a multitude of health problems (see my profile). Not one of them ever put the pieces of the puzzle together until I had extensive testing at the Detroit FFC. Even then the doctor would not acknowledge my Lyme disease.

    It is almost inconceivable that something the size of a poppy seed (nymph) and a sesame seed (adult tick) can make you so sick that you wish you were dead. Now that you have the proper diagnosis you can get the right treatment.

    This is very hard but now that you have a piece of paper with the words "positive" on it for a "REAL" disease you can prove that you were never crazy. You will be amazed at the change in those around you. When they see you finally getting better they will be shocked at your progress.

    Part of the problem is people have such faith in modern medicine. When you are sick for more than 2 weeks with something "mysterious" people start to shun you. I think the 2 weeks is about as long as a bad cold lasts.

    They think... Maybe I could get it. Maybe she's (or he) is just crazy sauce. After that then you get a nut job label. People are afraid of their own mortality so they just don't accept chronic illness. If it could happen to you then it could happen to them.

    I wish so many things were different about our culture as people. Reading Kafka's story about the man who worke up one morning and changed into a giant cockroach (a metaphor for his own TB illness maybe?) made me think differently about a lot of things.

    I wish you the best. So sorry you lost years too. Since you can't take back your last breath -- it's gone -- all you can do is move forward.

    From: http://www.ilads.org/files/burrascano_0905.pdf

    "TREATING CHRONIC LYME DISEASE

    J. J. Burrascano, MD April 24, 2004
    Board Member of International Lyme and Associated Diseases Society
    East End Medical Associates, P.C.
    East Hampton, New York

    TYPES OF LYME DISEASE
    . Early Lyme Disease ("Stage I")
    - At or before the onset of symptoms
    - Can be cured if treated properly
    . Disseminated Lyme ("Stage II")
    - Multiple major body systems affected
    - More difficult to treat
    . Chronic Lyme Disease ("Stage III")
    - Ill for one or more years
    - Serologic tests less reliable
    - Treatment must be more aggressive and of longer duration

    DEFINITION OF CHRONIC LYME
    . Ill for more than one year, regardless of whether treatment has been given
    . Disease changes character
    . Involves immune suppression
    . Less likely to be sero-positive for Lyme
    . More likely to be co-infected
    . More difficult to treat

    CHRONIC LYME DISEASE
    Why are patients more ill?
    . Higher spirochete Load
    . Development of alternate forms
    . Immune suppression and evasion
    . Protective niches
    . Co-infections

    SPIROCHETE LOAD
    . Low Spirochete Load-
    - Inapparent infection
    . Increased Spirochete Load-
    - Symptoms
    - Seropositive

    ALTERNATE MORPHOLOGIC FORMS
    . Spirochete form- has a cell wall
    - Penicillins, cephalosporins, Primaxin, Vanco
    . L-form (spiroplast)- no cell wall
    - Tetracyclines, Erythromycins
    . Cyst?
    - Flagyl (metronidazole), tinidazole
    - Rifampin


    IMMUNE SUPPRESSION BY Borrelia burgdorferi
    . Bb demonstrated to invade and kill cells of the immune system
    . Bb demonstrated to inhibit those immune cells not killed
    . The longer the infection is present, the greater the effect
    . The more spirochetes that are present, the greater the effect

    PROTECTIVE NICHES
    . Within cells
    . Within ligaments and tendons
    . Central nervous system
    . Eye

    DIAGNOSING LYME
    . Is a clinical diagnosis- look for multisystem involvement
    . 17% recall a bite; 36% recall a rash
    . 55% with chronic Lyme are sero-negative
    . Spinal tap- Only 7% have + CSF antibodies!
    . ELISAs are of little value- do Western Blots
    . PCRs- 30 % sensitivity at best- requires multiple samples, multiple sources

    CD-57 COUNT
    (Natural Killer Cells)
    . Low counts seen in active Lyme
    . Reflects degree of infection
    . Can be a screening test
    . Can be used to track treatment response
    . Can predict relapse
    . Commercially available and covered by insurance!

    WESTERN BLOT IN LYME
    . Reflects antibody response to specific Bb antigens- they are reported as numbers called "bands"
    . Some bands are seen in many different bacteria- "nonspecific bands"
    . Some bands are specific to spirochetes
    . Some bands are specific to Bb
    . Positive blot contains bands specific for
    Lyme
    . Specific: 18, 21-24, 31, 34, 37, 39, 83 & 93
    . Spirochetes in general: 41
    . Nonspecific: All others!
    . The more specific bands that are present, the more sure the diagnosis

    NOW THE BAD NEWS! PITFALLS OF THE WESTERN BLOT
    . Very difficult to produce and interpret a western blot
    . Bands do not easily line up
    . Appearance affected by subtle changes in temperature and chemistry of the test system
    . The specific strain of Bb used to produce the antigens may not match the strain the patient has!

    HOW DO YOU MAKE THE DIAGNOSIS?
    . Lyme is a clinical diagnosis
    . Even the best Lyme tests are only an adjunct
    . Use the ILADS point system

    POINT SYSTEM
    . Tick exposure in an endemic region 1
    . History consistent with Lyme 2
    . Systemic signs & symptoms consistent with Bb infection
    (other potential diagnoses excluded):
    . Single system, e.g., monoarthritis 1
    . Two or more systems 2
    . Erythema migrans, physician confirmed 7
    . ACA, biopsy confirmed 7
    . Seropositivity 3
    . Seroconversion on paired sera 4
    . Tissue microscopy, silver stain 3
    . Tissue microscopy, monoclonal IFA 4
    . Culture positivity 4
    . B. burgdorferi antigen recovery 4
    . B. burgdorferi DNA/RNA recovery 4

    POINT SYSTEM DIAGNOSIS
    . Lyme Borreliosis Highly Likely
    - 7 or above
    . Lyme Borreliosis Possible
    - 5-6
    . Lyme Borreliosis Unlikely
    - 4 or below"