FM and CFS vs Lyme Disease

Discussion in 'Fibromyalgia Main Forum' started by taysmom, Sep 17, 2006.

  1. taysmom

    taysmom New Member

    Hi all
    I'm new to this board. I was just diagnosed with FM and CFS and also have Hashimoto's Thyroid Disease.
    My bosses wife insists that I have Lyme Disease.........so I was wondering if anyone had any opinions on this?
    She claims that many people she knows were diagnosed with FM and CFS and were misdiagnosed and now being treated for Lyme Disease.
    I have had an ELISA test which was negative and am waiting for results of the Western Blot test for Lymes.
    I'm getting ready to go to a Fibro and Fatigue Clinic, but still keep wondering if I'm doing the right thing.
    Any thoughts would help me greatly. Thanks.
  2. mollystwin

    mollystwin New Member

    Your bosses wife has a point that many people diagnosed with FM and CFS do in fact have Lyme. My twin sister and also my SIL were two people I know who were diagnosed with both and really turned out they have Lyme.

    If I were you, I would get a Lyme test from Igenex. Insist on this test. My SIL had four negative test results before getting a Igenex test that was positive. The false negatives were western blots and ELISA tests I beleve. There are many false negatives even with the igenex tests, but the Igenex is the most reliable.

    Good luck to you.

  3. taysmom

    taysmom New Member

    Thank you for your reply. I feel confused about what I might have. I actually did send an Igenx test in and I'm still waiting for the results. If they come back negative......do I have FM/CFS or do I have Lyme????? I've been trying to get a dx for 2 years now!! I hope I can find some answers, because I have been sick for too long (as I'm sure you understand). Thanks again.
  4. hopeful4

    hopeful4 New Member

    Hi taysmom,
    Yes, it sure can all be confusing. I was diagnosed w/CFIDS in 2000, went from Dr. to Dr. trying to get well, but got worse. I found help at the Fibromyalgia and Fatigue Center where I was finally diagnosed with Lyme Disease!! That was in Dec. '05.

    The symptoms of CFIDS, FM, and Lyme are overlapping, very similar. The ELISA test is notoriously not reliable. The IGENEX Western Blot, is considered far more reliable. However, even that can come up negative, and sometimes one must begin treatment before it will indicate positive.

    Lyme Disease is diagnosed clinically. That means the Dr. will take into account your history (including where you have been, and what activities you've been involved in), and your symptoms. The lab test can help make the diagnosis. But, if it comes up negative, that does not rule out Lyme. Confused yet?

    As far as the Fibro and Fatigue Centers go, I believe that different doctors at the different centers have different levels of understanding and ability to help patients with Lyme Disease. If you are not satisfied with the care at the FFC you choose, you may want to consider finding a Lyme Literate Dr. (LLMD). Many infectious disease doctors, rheumatologists, etc. just are not familiar enough with Lyme to diagnose and treat effectively.

    I strongly suggest that you read up as much as you can on Lyme Disease. You can find info at lymenet dot org, and lymeinfo dot net and ilads. Very important to read is Dr. Burrascano's Advanced Topics in Lyme Disease, Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses.

    I'm going to repost you a couple of past posts FYI.

    Best wishes,
    Hopeful4
  5. hopeful4

    hopeful4 New Member

    Lyme Disease and It's Link to CFIDS and FM


    Many of us with CFIDS/FM found out we have Lyme Disease. I will post you some info to consider for yourself:


    Lyme Disease and Its Link to Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue
    ImmuneSupport.com

    10-03-2005

    By Kent Holtorf, MD
    (Reprinted with author's permission)

    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.



  6. hopeful4

    hopeful4 New Member

    Lyme Symptoms Re-posted


    Lyme Disease

    Below is an article from the Canadian Lyme Disease Foundation:

    Lyme (commonly misspelled as Lime or Lymes) Disease 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.

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

    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. 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 Presentations and Misdiagnoses

    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.

    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


    Eyes/Vision

    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


    Ears/Hearing

    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

    Diarrhea
    Constipation
    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 affect from alcohol and possible worse hangover

  7. kellyann

    kellyann New Member

    I was told for many years I had Fibromayalgia. I started going to the FFC in Atlanta, found out I do have Lyme disease. I have been treated there for about 8 months now and I am no better off than I was in the first place, I am losing faith in the FFC. I don't know where else to go though. I can't believe that Lyme disease is so hard to treat.

    Kellyann
  8. musikmaker

    musikmaker New Member

    If Lyme is this hard to diagnois how can we be sure they are right when they tell us we have it? It all seems very overwhelming.
  9. mollystwin

    mollystwin New Member

    Kellyann- I'm sorry you don't feel any better after 8 months! But I understand that it can take quite a while for Lyme treatment to work. Sometimes even takes a year or two! Hang in there and I sure hope you feel better soon!

    Musikmaker- Lyme is very confusing! I have never heard of anyone getting a false positive with lyme though, so if you have a positive then I think you can assume you have it.

    Hopeful4- Thanks for posting all the info! It should be helpful to taysmom.
  10. taysmom

    taysmom New Member

    Now I'm even more confused than before. Does the FFC treat people for Lymes Disease? or just FM & CFS?
    Thanks for all the articles..........alot of the symptoms sound exactly the same. It is very scary that the medical world can not figure this thing out.
    I don't want to go and be treated for FM & CFS and then find out later on down the road that it's Lyme. Financially impossible!!!
    I'll keep you posted on what my test results are from Igenex for Lymes.
    Thanks again.
  11. mollystwin

    mollystwin New Member

    I hope your test gives you the answers you are looking for. My twin sis started at the FFC and will be forever grateful for them diagnosing her Lyme, but now goes to a terrific dr who has helped many patients with lyme get well. The new dr takes her insurance and has a lot more experience with lyme. Had she not heard of him from a neighbor, she would have stayed with FFC.
    The FFC does treat lyme, but some centers are better at this than others. [This Message was Edited on 09/17/2006]
  12. mezombie

    mezombie Member

    I'm feeling pretty low right now because I've tried just about every CFS treatment out there that I'm comfortable with, and I have not seen much improvement.

    I was hoping that I had neurotoxin poisoning, after reading Dr. Shoemaker's site. I was swimming in the ocean with Red Tide, and was eating a lot of seafood (some raw), so it all made sense to me.

    Yesterday I took the Visual Contrast Sensitivity Test. I passed --- meaning this is <b> not </b> what I have. I actually got depressed! Well, I figured if I had it, at least it was treatable...

    So my next move will be to check out the Lyme Disease angle. I'm grateful to have found out that Igenex is the lab to go to, that it's a clinical Dx, and that one has to find an LLMD.

    Thanks to all for raising this issue.
  13. taysmom

    taysmom New Member

    for all the great advice and for those great articles!!
  14. victoria

    victoria New Member

    My son would've been dx'd with FM since all his regular lab work came up 'okay'........

    but after my response to the marshall protocol (there are articles on it here in the Library up above), and the fact that people here started turning up positive for Lyme and getting better with treatment, plus that he grew up basically outside, led me to next have him tested for Lyme.

    The internist had NO idea what to recommend, by the way. So I took him to a LLMD 200 miles away. And Yes, it should be a clinical dx since even Igenex is not 100% reliable - no test is for anything that I've ever heard of.

    My son did come up positive on Igenex according to even the strict CDC standards, despite all his other bloodwork being normal; and was still positive 6 months after starting oral abx. It has now been 16 months of abx treatment; while he's doing some better (regained weight, higher BP and pulse) he still has a lot of pain and cognitive problems.

    I have read of some getting almost immediate results from treatment even when having had it a long time, while others take 2-3 years. Some do not get better. Some of the latter group are getting better with the MP by the way. (Yes it does take dedication/discipline to do the MP, which is why my son is not doing it.)

    How long it takes to get better, I think, just depends on your genetic susceptibility, probably also the variety one has (over 100 varieties of lyme in US alone) -- not to mention the general rule that there are probably coinfections as well.

    One thing has been proven to me over and over - no one thing works for everyone in our population, no matter how definitive the diagnosis it seems.

    Good luck with whatever you decide to do!

    all the best,
    Victoria