I know this board is for Fibro and CFS sufferes. I do not have Fibro or CFS. However, I was recently diagnosed with disseminated Lyme disease.
I thought I would come here and encourage anyone who has been diagnosed with Fibro or CFS to investigate Lyme disease with an ILADS trained LLMD (Lyme LIterate MD.)
I have met numerous Lymies in the past 2 months. Many were misdiagnosed with Fibro or CFS for years or decades before being accuratly diagnosed with Lyme. In many situations, people recovered...complete recovery...after getting the proper treatment by an LLMD. In most situations people at least get better.
Please know that Lyme is very controversial. Most regular docutors follow the IDSA Lyme guidelines. The tests are very innacurate and the treatment is not adequate. I tested negative on my first Lyme test back in March before testing positive in April on a better test by an LLMD.
So..it is something to consider. Google ILADS for Lyme and find the various treatment protocols. Also check out the film "under our skin." Google it or watch the trailer on youtube.
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, oval and spreading out (more generalized)
Raised rash, disappearing and recurring
Head, Face, Neck
Unexplained hair loss
Headache, mild or severe, Seizures
Pressure in head, white matter lesions in brain (MRI)
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy, Horner's syndrome)
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 (phlegm) ), 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)
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
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
Mood swings, irritability, bi-polar disorder
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
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)
Forgetting how to perform simple tasks
Reproduction and Sexuality
Loss of sex drive
Unexplained menstral pain, irregularity
Unexplained breast pain, discharge
Testicular or pelvic pain
Unexplained weight gain, loss
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
Increased effect from alcohol and possible worse hangover
I have almost all of the symptoms listed above. how does one get tested? how can you be sure this is what it is? many doctors have told me that there is nothing wrong with me, done all kinds of tests that come back fine. i was once told several years ago that it might be fybro..since then the doctors i have seen wont test me for anything.
I can also testify that Lyme disease, if not caught early, can turn into a diagnostic and treatment nightmare.
In regards to the above post asking about how to get tested:
The medical community is strongly polarized on the topic of Lyme disease, and everything from testing, to diagnosis, and through treatment, is affected by what type of doctor you see.
As bcb1200 notes, ILADS-trained doctors (International Lyme And Associated Diseases Society) adopt a more broad interpretation of the tests used for Lyme disease. The standard testing scheme is a two-tiered method involving first a screening. If (and only if) the screen is positive is the more detailed Western Blot performed. It is important to note that the tests do not detect Lyme directly. Instead, they detect the antibodies the body makes in response to Lyme. However, even if you get a Western blot that shows Lyme disease, you may still be told that you are "negative" because the widely-adapted IDSA guidelines require that many bands (corresponding to many different antibodies) be present. This is ridiculous, since if you have ANY Lyme-specific bands, then you have Lyme disease. Saying "you only have a few bands" is like saying "you are only a little bit pregnant." That's not how it works, either you have it or you don't!
The guidelines for testing were developed for disease monitoring, and not for diagnosis. That is why they are so stringent.
Also, a person who has been sick for a very long time is actually more likely to test negative than someone with a more recent infection. This is because over time, the body stops having a strong antibody response to the Lyme bacteria. Finally, ticks carry diseases other than Lyme that contribute to the illness. These are called "co-infections," and they are not tested for with standard Lyme testing.
Then, even if you do get a diagnosis, there is a lot of disagreement about how to treat Lyme disease. The standard route is two weeks on a single antibiotic. On the other hand, ILADS doctors will use long-term, combination antibiotic treatment. I am on the later, and have been treating my LD for more than 1.5 years. It has given me my life back, bit by bit.
Often, ILADs doctors will make a clinical diagnosis, based on symptoms, history, and tests ruling out other conditions. The treatment for LD is antibiotics, which have a relatively low risk. So an ILADS doctor may try antibiotics based on a clinical diagnosis. Lyme disease patients often experience extreme responses to antibiotics called "Herxheimer reactions." These reactions occur when the bacteria start to die and release toxins into the body. It's sort of like a hangover, when the body can't process the alcohol fast enough to avoid us from getting sick from the toxic aldehyde metabolite.
I do think there are causes of fibromyalgia and CFS other than Lyme. Viruses can trigger CFS, an injury or surgery can trigger fibro, etc. But it is true that many Lyme patients are misdiagnosed with fibro and/or CFS.
My Lyme diagnosis was very delayed, and my Lyme disease did cause secondary problems including myofacial pain syndrome. Lyme weakens the muscles, so I developed many painful trigger points. So I have fibro problems secondary to Lyme and requiring treatment separate from my long-term antibiotic treatment for Lyme.
Again, the "take home" message here is that if you do have late-stage Lyme disease, you will not get a diagnosis for it, nor will you get adequate treatment, unless you actively seek an ILADS MD. I saw about 8 doctors and specialists within a year that all strongly denied that I could have LD, it was only when I specifically sought out a so-called LLMD that I made any progress.
By the time I was diagnosed, I was effectively disabled. I had lost the ability to work full time, I was in constant pain, I couldn't think straight, was experiencing palpitations, and loads of neurological symptoms. It has taken a long time, but I am improving, working full time and rebuilding my life.
Sorry for the long long post, but obviously this hits close to home for me.
There is yet another thing that fits in with all the above. One of the viruses many of us were given along with the polio vaccine shares something with the borrelia spirochete. The virus is known as SV40 and like the borrelia spirochete it prefers to infect glial cells of the central nervous system. It causes vacuolation of these cells which could be the fibro of fibromyalgia.
Glial cells, sometimes called neuroglia or simply glia (Greek γλία, γλοία "glue"; pronounced in English as either /ˈɡliːə/ or /ˈɡlaɪə/), are non-neuronal cells that maintain homeostasis, form myelin, and provide support and protection for neurons in the brain, and for neurons in other parts of the nervous system such as in the autonomic nervous system.
As the Greek name implies, glia are commonly known as the glue of the nervous system; however, this is not fully accurate. Neuroscience currently identifies four main functions of glial cells:
To surround neurons and hold them in place,
To supply nutrients and oxygen to neurons,
To insulate one neuron from another,
To destroy pathogens and remove dead neurons.
For over a century, it was believed that they did not play any role in neurotransmission. That idea is now discredited; they do modulate neurotransmission, although the mechanisms are not yet well understood.
Presently there is no testing available for SV40, the virus given us, especially those of us 55 or older who received the Salk vaccine.
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