More on Lyme Dx:

Discussion in 'Lyme Disease Archives' started by bunnyfluff, Nov 6, 2007.

  1. bunnyfluff

    bunnyfluff Member

    Posted here by request:

    I got this from a great site I just found: truthaboutlymedisease

    Maybe you remember being bitten by a tick as a child and thought nothing of it, maybe you were bitten recently, most likely you don't remember a bite at all. But you aren't well and you have symptoms that cannot be diagnosed. Your Md may tell you have anxiety, depression, CFS, Fibromyalgia or worse, your Md thinks you are making it up and nothing is wrong with you. Maybe you remember having a flu like illness and have not been the same since. All of your test results have all been normal and possibly you have even had a negative Lyme test. Welcome to the world of Lyme Disease, where most of us with this disease have been down that road.

    As a Lyme Disease sufferer myself, I want to help you get on the correct road and that starts by trusting the information you read here.

    I think most people are amazed at how small a tick can be, the size of a the period at the end of this sentence. Not just Deer ticks transmit Lyme, all ticks are carriers. Many have told me they thought they had a black head pimple when in fact it was a "feeding" tick. Others describe, a freckle "with legs". They can be black, brown or tan and found in your backyard, parks, forests, everywhere. The most common place to get bitten is in your own yard.

    Lyme doctors are learning Lyme may be transmitted sexually, through saliva, organ donation, blood transfusions and passed to your children congenitally. It is not uncommon for an entire household to test positive for Lyme, not one of you will likely have identical symptoms.

    Lyme Disease, which is never talked about or discussed in the media, is the fastest growing infectious disease in the U.S. and the number one vector (insect) borne disease. Yes, you are far more likely to get Lyme Disease than West Nile Virus, at least 10 times more likely. You can be bitten and not know it and Lyme Disease can "percolate" in your body coming out one symptom at a time over years, or it can appear in instant.

    Having a negative Lyme test means nothing, zip, nada. The blood test your primary doctor orders has been proven to be an unreliable test. These tests were designed by the CDC (Center for Disease Control) and were NOT meant to be a diagnostic test and is highly unreliable. The CDC themselves have this posted on their website. Lyme has always meant to be a clinical diagnosis, not to be based on an any blood test.

    Recently in a surprise announcement, several news stations have reported the CDC has reported that 20,000 cases of LD were reported last year, but 200,000 cases of LD went unreported/misdiagnosed! Lyme simply is an epidemic.

    Most of us with Lyme Disease know the test given at hospitals and commercial labs across the country are unreliable. Most of us have been tested through Igenex, a tick borne specialty lab. (Please see ILADS basic info. - 1st link under Resources for more on the unreliable Lyme test). Igenex has many ways of finding tick borne disease and is the preferred lab of most Lyme literate Md's. But even though Igenex is a very reliable lab, no blood test is 100% reliable, therefore seeing an LLMD and telling him/her your symptoms is critical to correct diagnosis and treatment.

    Lyme Disease has been called the "Great New Imitator", having up to 75 different symptoms, it is hard to recognize by Md's since most of us don't have the same exact mix of symptoms. Md's are not trained to diagnose Lyme and will not treat you unless you have recollection of a tick bite or the classic bulls eye rash. Even if you do have proof of a tick bite or rash, they will surely under treat you. When Lyme is under treated or a bite is never treated, symptoms can appear and will not abate without proper diagnosis and treatment.

    Lyme bacteria, called Borrelia burgdorferi is similar to syphilis bacteria. It is corkscrew shaped and enters the body immediately after a tick bite and has been found in the CNS (central nervous system within 24 hours of being bitten). Because of its shape, it prefers to quickly move into the tissue, where it travels better and can invade organs and every bodily system. It grows in cycles, usually every 4-6 weeks and that is why long term antibiotic treatment is necessary. You cannot kill this bacteria in 2 weeks of antibiotics, it will grow again in a few weeks. It is a smart bacteria and can hide from the immune system invading healthy cells, going unnoticed, therefore is not attacked by our immune system. It can form cysts when it senses a hostile environment (antibiotics) and hide from many antibiotics.

    Lyme is a "political" disease that has doctor's butting heads regarding treatment, all I know is that I will never trust any doctor again unless he is a Lyme literate Md. The IDSA (Infectious Disease Society of America) has really become the Lyme patients enemy. Their claims of short term antibiotics "curing" Lyme Disease is baloney. They believe that if you still are sick after a short course of antibiotics that you have "Post Lyme Syndrome" and will live this way forever.

    ILADS (International Lyme and Associate Disease Society) are our "friends" . They have mountains of evidence that long term antibiotic treatment works! The IDSA is not willing to go through all the evidence, they are a hard headed group of uneducated Md's who give a gloomy, dismal outcome, one with no hope of getting well. They also claim if Lyme is not caught within 4-6 weeks of being bitten, you will never be well again. Nonsense! The IDSA is wrong, period. I am living proof they are wrong ( I am getting well slowly but surely) and their are many others who have gotten well following ILADS protocols that can tell you too, the IDSA doesn't know what they are talking about and statement from them regarding Lyme should be ignored. Be aware, most mainstream Md's follow the lame protocol of tthe IDSA.

    No matter what your story, you remember the bite, you don't remember any bite, you are obviously searching for answer to your symptoms. If you have had "normal" test results or test results that don't quite fit your symptoms (the only test result I had that was "off" was my cortisol was high, my Md, thought he had struck gold, but he was very wrong) or if you have been diagnosed with any of the following (this is only a partial list), please consider seeing a LLMD (Lyme Literate MD) to rule in/out Lyme Disease:

    Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystitis, GERD, Acid Reflux, Fifth Disease, Multiple Sclerosis, scleroderma, Lupus, early ALS, early Alzheimer's Disease, Chron's Disease, Ménières syndrome, Reynaud's Syndrome, Sjogren's Syndrome, Irritable Bowel Syndrome, Colitis, Prostatitis, Psychiatric disorders (bipolar, depression, anxiety, etc.), Encephalitis,Sleep disorders, Thyroid disease and various other illnesses. Any multi-symptom, multi-system issues, Lyme must be considered.

    Lyme literate Md's are not easily found and are not listed in your local phone book under Lyme Md. They are far and few between and many have to travel a ways once one is found. Believe me when I say, your primary doctor has never even heard the term, "Lyme Literate MD" so don't waste your time asking for a referral.

    The most important fact I can tell you and that you must remember and be aware of is that your current primary Md (no matter how much you may trust or love him) doesn't know the facts surrounding this disease and is totally uneducated about Lyme Disease. Your doctor does not know the symptoms of Lyme or how you may contract Lyme and he/she does not know how to test for it or how to treat it. Neurologists, Infectious Disease MD's and specialists from all fields of medicine, know very little regarding Lyme Disease, if anything at all. Follow your gut instincts, your instincts will never fail you.

    My best to all of you!

  2. jess

    jess New Member

    Hi Bunny, thanks so much for that great info. I went to the site, thetruthaboutlymedisease and there is so much info on it. I found info on CD_57 test which I have been looking for for a while. i truly believe I have Lyme and will take the Ignex test in 2 weeks. I have been sick for so many years 20+ and have been getting worse. My daughter was born with the same thing as me so if I have LYme she will be tested too. I am beginning to think that most CFSand Fibro are symptoms of Lyme. I think it's all Lyme. Well thanks again and be well, Jess
  3. Katy47

    Katy47 New Member

    At the risk of sounding irresponsible, I'm told you can buy any antibiotic over the counter in Mexico.

    Seems like a good shortcut to me if all else fails, esp. since self assessment and education is usually better than most docs'.


  4. munch1958

    munch1958 Member

    I've heard some have turned to vet meds to self treat. Now
    that's scary.

    I've bought some meds in Mexico. Turned out what I bought for sleep was the best pick me up ever.

    I'd be afraid of not getting it right doing it myself. What about coinfections?
  5. Katy47

    Katy47 New Member

    I suppose just research your co-infections thoroughly and stock up on the appropriate antibiotics - broad spectrum, esp.

    I'm new to this, but I would suer be happy to go to Mexico if my FFC doctor "misses" Lyme and I still feel I must have it. I would also plan to double and triple my intake of probiotics, of course, to offset the antibiotics.

    Get your passport if you don't have one yet!