SORRY....Not CFS or's

Discussion in 'Fibromyalgia Main Forum' started by bunnyfluff, Apr 18, 2007.

  1. bunnyfluff

    bunnyfluff Member

    LYME! I have been suffering and misdiagnosed/undiagnosed for 7 years. All of this joint pain, brain fog, migraines, sheer exhaustion, suicidal depression, worsening health, EBV, trips to the Dr~ blood work, neg. has all been Lyme. Here's how it happens:

    John Drulle, M.D.

    Since Lyme disease is caused by a spirochete bacterium, Borrelia burgdorferi, the ideal diagnostic test would be one which could isolate the bacteria from the patient by culture or direct stain. This is rarely accomplished.

    There are a few blood tests available, but they are not reliable, at this time, according to the CDC. Currently available commercial tests for Lyme disease provide indirect evidence of exposure to the Lyme bacteria. Most experts believe that the ELISA test (the typical test used by most family doctors) is only about 30-60%. When someone is infected with the Lyme bacteria, the immune system responds by making specific proteins, called antibodies, whose role is to seek out the Lyme bacteria, attach to them and initiate the process of destruction. In most patients, these antibodies are unable to destroy the Lyme bacteria, which by methods which are not completely understood, may remain alive in the human body for many years, in spite of high “titers” or concentrations of antibodies. Detectable levels of these antibodies may not be found until 3 to 8 weeks after exposure. Significant illness may be present before the test is positive. A number of patients clearly do not develop measurable antibodies. This is usually due to antibiotics given early in the infection for Lyme or non-Lyme infections. There is significant strain variability in Lyme bacteria isolated in different geographic areas, and since commercial tests have been developed from certain particular isolates, they may be incapable of detecting antibodies to a different strain of Lyme bacteria. It is also possible that some people’s immune systems do not recognize the Lyme bacteria is an invader and do not produce specific bacteria and their fragments; they may combine with all the circulating Lyme specific antibodies. Current commercial antibody tests for Lyme can only detect free circulating antibodies, and are incapable of detecting those bound up in immune complexes. Investigational tests have been developed to free these sequestered antibodies and render them measurable by the standard tests. There is wide variability between tests of commercial laboratories, and it is not unusual to have a serum sample test positive in one lab and negative in another. The percentage of Lyme patients who test negative on the antibody tests is close to 100% if the test is performed early in the infection, to anywhere between 5% and 40% in late disease, depending on the particular published data we wish to site. It is also known that false positive tests can occur. These may be due to other previous or current spirochetal infections such as syphilis, tick-borne relapsing fever, leptospirosis, and gingivitis. Some patients who have rheumatoid arthritis, Lupus, or mononucleosis may test positive. Some people who appear to be in good health and have no Lyme related symptoms may test positive. This may indicate past exposure to the Lyme bacteria, with spontaneous recovery, or it may represent a dormant infection which may activate at some future date and cause clinical disease. This has been well documented in European literature.

    The Western Blot is also available for Lyme disease. Here various sized Lyme antibodies are allowed to migrate on a strip of filter paper. They separate into distinctive bands, and serve as a fingerprint for Lyme disease. It may be useful to sort out false positive tests and in cases where the antibody titer is “borderline”. Since its results depend on the presence of Lyme specific antibodies, the same factors which can cause a negative serologic test may cause a negative Western Blot. The U.S. Center for Disease Control (CDC), unfortunately, has set criteria arbitrarily for reading a Western Blot test as a positive for Lyme disease. The criteria were set up for statistical analysis of the spread of Lyme disease and were not intended in general to guide doctors in diagnosis and treatment of the disease. The CDC surveillance criteria are very strict and miss many people with Lyme disease.

    The most common errors made by physicians in interpreting these previously mentioned tests are:

    A negative test excludes the diagnosis of Lyme disease.
    A negative test in someone who previously tested positive and received antibiotic treatment implies “cure”.

    PCR analysis is another type of test that looks for the DNA of the Lyme bacteria in the blood, urine, or tissue. To obtain a sample that contains the bacteria, multiple tests are usually required. In recent years, PCR testing has become extremely reliable when positive.

    According to Medical textbooks, the FDA and the CDC, Lyme disease is a clinical diagnosis, which means that the doctor should examine the patient for typical Lyme disease signs, look at the patient’s history and description of his or her symptoms and use this information to make a diagnosis. The laboratory tests may be a useful adjunct in making diagnosis, negative results do not rule out the possibility of the disease. They should not be relied upon for diagnosis.

    Testing is also available for co-infections, namely, Babesiosis, Erlichiosis, and Bartonella. Although B. burgdorferi remains the most common pathogen in tick-borne illnesses, coinfections are increasingly seen in patients with Lyme disease, particularly in those with chronic illness. Recent animal and human studies suggest that Lyme disease may be more severe and resistant to therapy in coinfected patients. Lyme disease patients should be aware that concurrent testing and treatment for coinfection should be mandatory.

    Originally written by John Drulle, M.D. in 1991 and updated by the John Drulle, M.D. Memorial Research Fund, Inc. in 2005

    So, you see, you can have a strain that doesn't react to the test, have it dormant for years, get it from a mosquito bite, have a co-infection, etc, etc, that makes it hard to detect.

    Last week, I couldn't put 2 and 2 together, get out of bed, had horrible joint pain for 7 years, migraines, depression that made me near suicidal.

    One week after starting my treatment I am happy, full of energy, free of pain. I finally have hope for my future again, which no other Dr. had given me before. A month ago I thought I would have to give up my career forever.

    Anyone can see I have been here for years, and I'm not here to sell you anything but some hope. Don't stop looking for what is really wrong. Dr"s aren't Gods. I almost died b/c they didn't look for a food allergy soon enough. For 9 yrs I was called a closet anorexic, put on Prozac, etc. I swore I would never let that happen to me again.

    Kudo's to Dr Rollins for believing in me, and continuing to test for parasites, co-infections, etc., and helping me get well.

    Sorry this is long. But I had to get it out there.

    Yours in Health,
  2. Marta608

    Marta608 Member

    Bunny, you say that one week after starting treatment you are happy, full of energy, free of pain. What is the treatment??

    I've been tested for Lyme twice with negatives both times but I still think it's a possibility. Interesting that the results are accurate only 30 - 60% of the time.

    By the way, CONGRATUATIONS!!!!!!!


    [This Message was Edited on 04/19/2007]
  3. dinkbay

    dinkbay New Member

    bunnyfluff, I would like to talk with you more about your illness, hope you could email me back at [edited to remove per site rules]
    I find your post so very interesting that I am hoping that you can email me .
    hugs to you and all who are having such difficulities

    Thanks again for your post.


    hugs to you all
    xoxoxoxox[This Message was Edited on 04/19/2007]
  4. bunnyfluff

    bunnyfluff Member

    I am doing the herbal treatment Samento. Here is some info. You can buy it over the counter. It also treats CFS and a host of other ailments, and has been used in other countries for generations.

    You have to start out slow, especially if you do the liquid b/c of the herx reaction. I am doing the pill form that I got from my Holistic Dr. I have had no bad reactions~ only fantastic!!!!! results!

    The lady who turned me on to this Dr was actually paralized with muscle stiffness....her husband had to carry her to the bathroom.....I kid you not.

    I just hope I can help get someone else on a path to wellness and get past all of this pain and suffering. I can tell you that I honestly was sitting in the bathtub crying last month, thinking about ending it all, and praying that I would get an answer. I have held on for my kids, but things really just kept getting worse and worse over the past 7 years. I felt like I couldn't kid myself anymore.

    There is no interaction with medications from what I have read, but do some research. I take a bunch of meds, but I feel like in a few months I will not be needing them anymore. I am already tapering off my migraine med.

    Gotta run for now!
  5. 139864

    139864 New Member

    Hi Bunny
    I am so happy for you ,more so that you are feeling so much better in yourself .I thought you might like to take this to your next Docs.appointment .It is recent & it relates to all the symptoms you have had including the Peripheral Neuopathy symptoms
    Best wishes
    Brenda uk

    2007 Mar 8; [Epub ahead of print] Links
    [Neurologic and psychiatric manifestations of Lyme disease.]Blanc F; GEBLY.

    The neurological and psychiatric manifestations of Borrelia burgdorferi sensu lato are so numerous that Borrelia is also called the "new great imitator". Thus knowing about the multiple clinical aspects of neuroborreliosis is necessary for the clinician. We reviewed literature for "classical" neuroborreliosis such as acute meningoradiculitis or chronicle encephalomyelitis, but also for encephalitis, myelitis, polyneuritis, radiculitis and more controversial disorders such as chronic neurological disorders, ischemic and hemorrhagic stroke, and motor neuron disease. We specified every time on which basis each disorder was attributed to Lyme disease, particularly if European or American criteria were met. Every part of the nervous system can be involved: from central to peripheral nervous system, and even muscles. In endemic areas, Lyme serology must be assessed in case of unexplained neurological or psychiatric disorder. In case of positive serology, CSF assessment with intrathecal anti-Borrelia antibody index will be more efficient to prove the diagnosis.

    PMID: 17350199 [PubMed - as supplied by publisher]
  6. bunnyfluff

    bunnyfluff Member

    Does this sound like you??

    Books/Video on Lyme Disease
    Lyme Disease ( commonly misspelled as Lime or Lymes ) symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite.

    Lyme Disease, SYMPTOMS & CHARACTERISTICS, a compilation of peer-reviewed literature reports

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscreet areas go undetected). Treatment in this early stage is critical. The Lyme Rash

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. Read here. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see Other Diseases and Lyme...Relationship

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    Free Canadian Lyme Disease Brochure (a computer file for you to print)

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup )
    Symptoms of Lyme Disease
    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring

    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears

    Digestive and Excretory Systems

    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)

    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage

    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness

    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety

    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks

    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstral pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain

    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you have not since felt well.
    Low body temperature

    Allergies/Chemical sensitivities

    Increased effect from alcohol and possible worse
  7. MsE

    MsE New Member

    Isn't it interesting that what for others would be bad news (Lyme disease) for people with CFIDS it is good news? I hope you continue to improve and I'm very happy for you. MsE
  8. twerp

    twerp New Member

    I'm so happy that you have found something that helps you.

    I've been googling Samento, and I see references to Samento with or without TOA and POA. I think one is bad - TOA I believe. Not sure about the other.

    Do you have any information on that?

    Thanks & Hugs,
  9. littleleafhopper

    littleleafhopper New Member

    Hey Bunnyfluff,

    Great news about finding the lyme! I hope that you will continue to have fabulous results! You mentioned the doctor that is helping you, but I'm not sure what that name was. Could you please be specific.

    Yours, Lil
  10. bunnyfluff

    bunnyfluff Member

    the TOA's are bad. You want the POA's.

    This herb can be used to treat a variety of things, it is an immune system modulator. That is the primary thing that is wrong- the Th-1 & Th-2 are out of balance, creating an environment perfect for the other virus' and parasites to take over and make us ill. That's why some people have EBV & HHV high and don't get a cold, and others constantly have sinus infections or strep.

    My Dr is in Ft Worth. Her name is Kari Rollins, D.O.

    This herb has been used for 2000 yrs to treat a host of things. Holistic healers are now using it to treat Lyme/ MS/ CFS/ EBV, etc., with great success.

    I have been taking a lot of different anti-virals, etc. with no real results. This stuff worked immediately!

    I don't think I have ever been this excited! I am already feeling 110% better and I still have 6 weeks to go in my treatment. I just can't believe it.....
  11. littleleafhopper

    littleleafhopper New Member

    Thanks for the information on Dr. Rollins Bunny! It's so wonderful to find Doctors that can help, and that listen. Sounds like you are really on the right track. Be well....

    Yours, Lil
  12. acer2000

    acer2000 New Member

    So where does one get this samento stuff if we want to try it? And based on your experience, how do you do it and what should we expect? :)
  13. ulala

    ulala New Member

    quick recovery!

    If you get a chance look up username neen85. She used to post a lot here and had Lyme and used Samento.

    Best wishes!
    [This Message was Edited on 04/20/2007]
  14. grace54

    grace54 New Member

    You have our attention, Please let us know what you are using and dosage if you can.

    I found a product called Saventaro- POA catsclaw 200% more potent than regular catsclaw ==20mg standardized root extract to contain minimum 1.3% POA and free of TOA's
    90 caplets $24.99. is this good? Thanks and happy for u:)
  15. puffy1

    puffy1 New Member

    So glad to hear you are doing so well what a reliefe I bet.

    My Lyme test was the western blot one I think all it says is no antibodies found and neg. both test I have had done same neg antibodies.

    should I ask for this other test?
  16. bunnyfluff

    bunnyfluff Member

    Puffy~ all of my previous Lyme tests had been neg. I even had the one where it reacts to the Lyme DNA. This is not uncommon. In some of the articles it explains that there are various strains of Lyme~ the tests are designed to only react to the most common one!!

    I started with 3 caps of the Prima una de Gato and am working up to 6 caps a day. It is labeled TOA Free, very important, as the TOA's interfere with the healing properties, and make it not pure or the same product/plant source. Mine is 0.5% POA's. 375 mg.

    Hope this info helps.
    [This Message was Edited on 04/19/2007]
  17. monalisa3

    monalisa3 New Member

    Bunny, It's great you are feeling better and recovering. I have FM and possible CFS. I have never been tested for lyme disease as I live in Australia. Have lookeed itno it about six months ago and according to research it rarely exists in Australia. I have had the classic bullseye rash that has been reaccuring many years ago. Doctors here in Sydney do not test for it and refuse to acknowledge any existance of it here. It is soooooo frustrating........
    Doesn't look like there is much that I can do about it.
  18. bunnyfluff

    bunnyfluff Member

    you can buy the Samento via the Internet. Try it and see if it helps. If you have the rash you have nothing to lose.

    My neice had Lyme and then was Dx'd with FMS as a result. If you were only treated with Abx it can still be in your system. Try this stuff and see if it makes a difference.

    Not any Cats Claw is okay- it has to say TOA free or it is not TOA free.

    I'm going out of town for the weekend. I hope if anyone tries it this week they have as good of results as I have had! I would not have been able to do this before- I can assure you of that.

    I only wish for health and healing for everyone on this board. This DD is so hard. It stole my heart and soul, it seemed. If this stuff helps even one or two of you as much as it has helped me, that will be a plus. I will feel like the information I have been able to share has done someone some good, somewhere in this world.


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