Question to those who have lymes disease or CFS

Discussion in 'Fibromyalgia Main Forum' started by 57Wagon, Nov 14, 2005.

  1. 57Wagon

    57Wagon New Member

    I was diagnosed with CFS and my blood work came back negative for lymes disease. I question if my lymes disease test results were a false-negative.

    My main symptoms are:
    Headaches
    Bad short term memory
    Brain fog
    Problems with concentration
    Leg muscles hurt
    Light sensitivity
    Noise sensitivity
    Fatigue

    I feel not bad in the morning, but as the day progresses the symptoms increase with severity. If I have a good nap in the day the symptoms will almost go away for a short period of time but will return within a couple of hours.

    Does your lymes disease symptoms come and go depending on how tired you are? Or is this common with CFS
  2. karatelady52

    karatelady52 New Member

    Did you have a Western Blot by Igenex for lyme or was it the Elisa? I think I read somewhere that the Elisa is 50% wrong most of the time. I wouldn't stop until I had the other test because lyme just keeps getting worse and worse and can be devestating if not treated.

    If you want to get a lot more information, go to Lymenet dot org. I have learned so much from them.

    They will tell you that you can have several false negatives before getting a positive. A good LLMD (lyme literate MD) doesn't just use the blood test but also looks at symptoms. Your symptoms do sound like lyme because lyme can cause a lot of neurological problems.

    Also, were you checked for viruses, toxins, etc?

    Sandy
  3. 57Wagon

    57Wagon New Member

    I have had so many blood tests I'm not sure what they were all for. I know the last tests included immunoglobulin and IGG Ant.

    I have asked for several metals test (mercury and lead...) over the past few years.
  4. karatelady52

    karatelady52 New Member

    I didn't answer your last question. Yes, the symptoms can come and go. Stress and tiredness can cause what I always thought was a "flare" from FM but it was actually the lyme.

    For some reason even the weather bothers me. If its cloudy and rainy my pain is a lot worse.

    Naps are very helpful when your immune system is taxed and you will feel better when you wake up. In fact, on the lyme board I mentioned to you, most of the LLMD's will say besides the antibiotics, you have to get good sleep, rest when tired, eat a low carb diet to get well because candida taxes your system even more.

    My body is so shot from having chronic lyme, I'm having to take all the hormones, progesterone, estrogen, testosterone, cortisol along with other supplements to help thin the blood that tends to thicken where lyme like to hide.

    There's no way for you to know unless you have a Western Blot done. Mine was done through the Fibromyalgia and Fatigue Center and they used a good lab -- Igenex. If you have a doctor who will work with you, maybe he will run one for you.

    Sandy

  5. victoria

    victoria New Member

    and yes all his symptoms tended to come and go, pains migrated too, had noise/light sensitivity, he is on treatment now, is overall doing better.

    I've been dx'd with CFIDS with pretty much the same symptoms... but I elected to do Marshall Protocol, was doing it before we realized what was going on with son, but because of my response to the MP (definite herxing) and disappearance of hip pain) I'm sure I have some type of microbial infection... just don't have ins. to pay for tests, and won't spend on me what we've spent on son.

    Keep trying!

    All the best,
    Victoria
  6. 57Wagon

    57Wagon New Member

    I will ask my doctor when I see him next week if I have had the Western Blot Test done.

    If a person doesn't test positive for lymes but still has the symptoms the same as lymes or CFS would it hurt to be treated with antibiotics for lymes disease just in case?

    Thanks for the information
  7. hopeful4

    hopeful4 New Member

    Hi 57,
    Yes, I believe many of your symptoms sound like Lyme, I have all you mention except for the leg pain. I was just DX, so I'm on a learning curve here.

    Treating chronic Lyme only with antibiotics is not likely to be very successful. It seems that different antibiotics help treat different forms of the spirochete, and in addition it is common to have co-infections that may need treatment with something else.

    At FFC, I will be on an antibiotic (waiting for Insurance approval), Cumanda (from a tree bark in Peru used to treat for viruses, parasites, and lyme); Lumrokinase (I believe this enhances the effect of the treatment); Burbur (helps with herxing) and Samento. I will start each one separately in case of a reaction.

    At the same time treating for candida, and mycoplasma. Still need to test for neurotoxins real soon.

    As karatelady says, the Igenex Western Blot is the way to go for testing. Also, working with a Lyme literate doctor is so important, as the diagnosis is clinical, meaning the lab test is only one part, and symptoms and history another.

    I will copy and insert an article for you below.

    Take care!
    Hopeful4

  8. hopeful4

    hopeful4 New Member

    This is from the Fibromyalgia and Fatigue Center

    Lyme Disease and Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue


    Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called “the great imitators” because they can mimic virtually any disease, which often leads to misdiagnosis. Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.

    Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as ‘brain fog’. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer’s disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.

    Patients with chronic Lyme disease often complain of ‘strange’ or ‘weird’ symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment.

    Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease. The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).

    If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.

    There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive. As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).

    Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst. Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease. Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy. A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).

    To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients.

  9. victoria

    victoria New Member

    Even the CDC says doctors are supposed to treat on the basis of overall clinical picture, not rely on only blood test or whether or not you know you had a rash (less than 40% do anyway)...

    Also, besides trying different abx to see how you react (what kind of herxheimer reaction is observed), Flagyl should be used for the cyst form of the spirochete, one way in which they hide out... as do e coli in bladder infections, by the way!

    Hope this helps,
    Victoria
  10. Rosiebud

    Rosiebud New Member

    common to CFS. CFS/Fibro/Lyme have many symptoms in common so if you are able to get a Lyme test then get it.

    love
    Rosie