Great website - Fibro, Lyme? lots more info..

Discussion in 'Fibromyalgia Main Forum' started by Janalynn, Dec 31, 2009.

  1. Janalynn

    Janalynn New Member

    Kind of a long read, so I apologize in advance! =)

    With so much talk about Lyme, I thought I would reread the symptoms. I think it is great that those that have been misdiagnosed at one time or another, then found they actually have something else and can treat it successfully, want to share their information. I'm sure those people want to shout from the rooftops!

    The only thing that I haven't agreed with is that since Fibro has no known "cause", it must be caused by Lyme or another infection when in fact that may not be true at all. They haven't found the cause YET. There are many illnesses that they don't know the cause of yet, that doesn't make their diagnosis less valid. There are also a lot of "illnesses or conditions" that are labeled Syndrome's, not Diseases, but are well recognized just the same.

    I googled "Fibromyalgia and Lyme Disease"

    This site is great, if you get some time, peruse through it, it has many categories on the left side of the page to read through from medications, LDN, alternative therapies, the use of opiods, explanations of all types of muscle relaxers, what friends can do for you if you have Fibro, what makes something be called a syndrome name it, it's there. (click on one, then more subsections show up below) Wondering if this LDN they mention is the same thing you're taking Jam?

    To find the info on Lyme, click on "Associated Conditions" I pasted some of the info below. Please check out the website though for some good reading and information!

    "You may be wondering what Lyme disease has to do with fibromyalgia, but in fact, the two have more in common than you might first realize. Though very different diseases, both Lyme disease and fibromyalgia have very similar symptoms. As a result, many patients complaining of fibromyalgia symptoms are misdiagnosed with Lyme disease. This can lead to improper treatment and serious health problems. If you are experiencing symptoms of widespread pain, muscle stiffness, and fatigue it is important for you to get tested and diagnosed by a number of health care professionals in order to rule out Lyme disease.

    What is Lyme Disease?

    Lyme disease is an infection caused by the bacterium borrelia burgdorferia, which is transmitted to animals and humans by ticks. Lyme disease can cause a host of different symptoms because it affects a number of different systems within your body, including your heart, brain, and musculoskeletal systems. More than 23,000 cases of Lyme disease were reported in the United States in 2002, and unfortunately, this number has been increasing steadily. Lyme disease can be successfully treated, but if it is not caught early, treatment does become less effective.

    Ticks and Transmission

    Lyme disease is passed to humans and animals through ticks, which are small bugs that live in forested and grassy areas. Ticks are actually a member of the arachnid family, meaning that they are related to the spider and scorpion. Ticks survive by feeding on the blood of animals. They attach themselves to your skin until they become saturated with blood and fall off.

    There are hundreds of different kinds of ticks, but not all are responsible for carrying Lyme disease. It is only the black-legged ticks, commonly called deer ticks, that transmit the disease. When these ticks attach to your skin and begin to feed they can pass the Lyme bacteria into your bloodstream.

    Lyme Disease and Fibromyalgia
    Unfortunately, because their symptoms are so similar, Lyme disease and fibromyalgia are often confused for one another. Many people with Lyme disease suffer the same widespread pain and tender points as fibromyalgia sufferers do. There is a diagnostic test for lyme disease, but it often produces false positive or false negative results. Consequently, many patients are left suffering for prolonged periods of time.

    It is thought that between 15% and 50% of those patients diagnosed with Lyme disease actually have fibromyalgia. It is important that you be tested for Lyme disease using a variety of different diagnostic tests, in order to rule out this disease. Long-term antibiotic treatment can result in serious side effects, and won’t do anything for your fibromyalgia symptoms.

    Symptoms of Lyme Disease
    If you have been in tick-infested areas, it is important to be able to recognize the symptoms of Lyme disease. If you have fibromyalgia, it is also important to be aware of the few distinguishing Lyme disease symptoms. This will help to ensure that you aren’t misdiagnosed with Lyme disease.

    Local Symptoms of Lyme Disease
    Local or early symptoms of Lyme disease are those that occur within the first two months of infection. They are typically mild and many people mistake the symptoms for the flu, making diagnosis difficult. These Lyme disease symptoms include:

    •The presence of a spreading red skin rash around the site of your tick bite. This Lyme disease rash appears within 3 and 30 days of infection; however, it only appears in 60% to 80% of those infected with the disease.
    •low fever
    •slight headache
    •muscle and joint ache

    Disseminated Symptoms of Lyme Disease
    Disseminated Lyme disease symptoms occur after eight weeks of infection. These symptoms result from the bacteria’s invasion of widespread areas of the body. Symptoms include:

    •severe headache
    •severe muscle and joint pain
    •heart palpitations
    •neurological problems including memory loss, difficulty speaking, difficulty concentrating, and paralysis of the face (Bell’s Palsy)

    Treatment for Lyme Disease
    Lyme disease treatment can be effective, especially when caught within 8 weeks of infection. More serious cases may never be eliminated completely. A four-week course of oral antibiotics is given for those suffering from the early stages of Lyme disease. Commonly used antibiotics include doxycyclin and amoxicillin. Intravenous antibiotics, like ceftrioxone, are administered for more advanced cases.

    Lyme disease does become chronic in about 5% of cases. Chronic lyme disease, called post Lyme disease, does not respond well to treatment and can lie dormant in your body for years. People with post Lyme disease can suffer from recurrent symptom outbreaks for many years.

    Lyme Disease Prevention
    In order to avoid getting Lyme disease, your best solution is to avoid contact with ticks or tick-infested areas. If you are going to be in areas where ticks are breeding:

    •Wear long sleeves and long pants
    •Tuck your pants into your socks
    •Use tick repellent
    •Keep your pets inside
    •Check yourself every 24 hours for ticks. Remove any ticks you find and keep them in a glass jar for testing."

    I was surprised that this said many people diagnosed with Lyme actually have Fibro, not the opposite.

    Here's to a New Year that is better than the last in every way!
  2. Nanie46

    Nanie46 Moderator


    There is much inaccurate information on that website.

    If you are looking for accurate Lyme disease information, do not look there.

    For example...

    "As a result, many patients complaining of fibromyalgia symptoms are misdiagnosed with Lyme disease."

    Nothing could be further from the truth. In reality, most patients are diagnosed with fibromyalgia, not lyme.

    Most Dr's do not even believe that chronic lyme exists, and mistakenly rule it out with a negative lab test. Fibromyalgia diagnoses are much more common.

    and this....

    "Treatment for Lyme Disease
    Lyme disease treatment can be effective, especially when caught within 8 weeks of infection. More serious cases may never be eliminated completely. A four-week course of oral antibiotics is given for those suffering from the early stages of Lyme disease. Commonly used antibiotics include doxycyclin and amoxicillin. Intravenous antibiotics, like ceftrioxone, are administered for more advanced cases.

    Lyme disease does become chronic in about 5% of cases."

    Most Dr's follow IDSA guidelines for treatment of Lyme. Those guidelines do not provide enough medication at high enough doses or long enough periods of time.

    That is one reason why people originally treated for Lyme by a Dr following those guidelines, find themselves with returning symptoms which become chronic. Then the Dr tells them that they were cured of lyme, so their symptoms could not possibly be related.

    Since Dr's often do not recognize Lyme, even in it's early stage, people often go untreated altogether.

    This is what happened to me and many others. A flu-like illness appears. The Dr told me it was viral, so no need for any antibiotics.

    Later the infection spread and then spread some more...leaving me with fibromyalgia, fatigue, insomnia, cognitive problems, etc.

    Lyme becomes chronic very commonly because of the ignorance of Dr's who do not know how to recognize, diagnose or treat Lyme.

    One place on the site you posted said fibromyalgia was called the "great imitator".

    Wrong......syphillis is the "great imitator". Lyme is called the "new great imitator".

    Both syphillis and Lyme are spirochetes.

    Then there is this.......

    "There are hundreds of different kinds of ticks, but not all are responsible for carrying Lyme disease. It is only the black-legged ticks, commonly called deer ticks, that transmit the disease."

    This is incorrect. Other ticks such as the Lone Star Tick and the Dog tick can transmit lyme.

    It is important for people to get accurate Lyme information.

    Here are links to sites with accurate Lyme information.....,_LIA.pdf

    Fibromyalgia is a symptom of a larger picture. Often, that larger picture is a bacterial infection and related coinfections...lyme, babesia, bartonella, ehrlichia (HME and HGE), RMSF, etc.

    Just because a site is on the internet and looks like it is official with a picture of a Dr on it, does not mean the information is accurate.

    I would not want anyone to read that and get misinformation that might prevent them from finding the cause of their illness.

    If the documentary film "Under Our Skin" ever plays in your area, please go see is a link to the trailer....

    Go to and post on the Medical Questions board...ask how many people were initially diagnosed with fibromyalgia or chronic fatigue syndrome and later found out the cause of their illness was the bacteria borrelia burgdorferi and related coinfections......the numbers are overwhelming.

    [This Message was Edited on 01/01/2010]
    [This Message was Edited on 01/01/2010]
  3. loto

    loto Member

    I have some questions for u because I know u know a lot about Lyme. A friend of mine's husband was recently diagnosed with lyme.
    Actually he was diagnosed with FM before he was tested and diagnosed with Lyme.
    He started out this past year going to a doctor because of severe pain in his shoulder blade area.
    I don't know all the details, but just a few months ago he was given the FM diagnosis. Then, finally 1 month ago he got the lyme test and it came back positive.
    So anyway, the doctor that gave him the positive result told him that he could tell him exactly when he was infected. He said by looking at the results of the test, he became infected about 3 weeks before the blood was drawn for it. I just didn't really believe this. I asked my friend, "well, do u think he really has lyme instead of FM then?" She said she doesn't think so, because he was diagnosed with FM a few months ago, and the DR said he came down with Lyme about a month and a half ago.
    Does this make sense to u?? Can drs really tell when someone was infected with lyme? He didn't have any tell-tale rash, but she does know he's a "tick" magnet. (which btw I am too).
    My friend and her husband aren't really concerned too much if he was misdiagnosed with FM, I guess they'll just see when he's done with the Antibiotics if his FM symptoms disappear.
    I am just curious if drs can tell when someone was infected by the tick bite.
  4. munch1958

    munch1958 Member

    The site doesn't even say who publishes it either. I would follow the links that Nanie listed for accurate information about Lyme disease. The ALDF, which is a front for the IDSA also has very incorrect info. As does the CDC's website.

    For every person that meets the CDC's narrow criteria which is for REPORTING purposes only, there are about 10 - 20 more people who are not being tracked. This puts the rate of Lyme infections around 230,000 per year not 23,000.

    Loto: Unless someone has an erythema migrans rash it is impossible to pinpoint exactly when someone was infected with Lyme disease. Less than 40% ever see the rash associated with Lyme disease. Once the distinctive rash appears a Lyme infection is a guaranteed thing.

    The buried truth about Lyme disease deaths....

    For state statistics on what kinds of tick are located in your state and to learn what infections those ticks are transmitting please go to this site:
  5. victoria

    victoria New Member

    All the research has shown that Lyme can lay low for many years and be asymptomatic.

    The other thing to remember is that ticks carry far more than Lyme -so even if one doesn't have Lyme 'specifically' you could have a number of other infections, such as mycoplasma, bartonella, etc.... to write it off is a mistake. Lyme accounts for 95% of reported vector-born diseases, while West Nile Virus accounts for about 2% - yet which one do you hear more about?

    I believe that we all have more than one 'thing', whether or not Lyme is included in the panoply... because, don't forget to add viruses into the mix. These bugs are all opportunistic if one's immune system becomes compromised, or, have something like XMRV that is in our RNA that could predispose us. I'm betting there will be other retroviruses found eventually.

    Please go to the sites that are reliable... tho I'm happy that you're discussing Lyme and its 'friends' here, there are so many found to have it along with other things...

    all the best,

  6. Janalynn

    Janalynn New Member

    Well, I personally enjoyed the site for many other reasons. I do not have Lyme disease so I am not trying to prove or disprove anything nor am I visiting Lyme sites specifically.

    I don't like hearing that you can't have Fibromyalgia -that it basically doesn't exist, just given a name, because it doesn't have a known cause.
    Can people be wrongly diagnosed? Absolutely, like they can be with many other things. That is also why so many things need to be ruled out in order to get an accurate diagnosis.

    It sounds strange when someone says they have Lyme but still have Fibro symptoms - wouldn't you have Lyme symptoms?

    Regarding having Fibro, then being diagnosed w/Lyme - my girlfriend's sister went through that about 2 years ago. She was successfully treated with antibiotics shortly after her rash appeared. She was lucky enough to have the classic rash to alert her. She did not remember being "bitten". She still has Fibro.

    Like I said, I liked a lot of the information on the site about Fibro - I won't continue reading any websites if I find info that I know to be inaccurate (about Fibro, since that's what I'm reading about specifically) God knows, there's a lot out there.
  7. victoria

    victoria New Member

    about your girlfriend's sister... did she experience any symptoms that disappeared after being 'successfully' treated with abx? Just wondering how she knows that it was successful... it's really a clinical dx. I wonder what all she's been tested for altho tests are pretty unreliable for most things, whether bacterial or viral... so many things are more of a clinical dx.

    I'm not trying to split hairs... my problems began after age 19 after a year of mono... never showed up with active mono after that, either; nothing much helped me as I went thru cycles of crashes & recovery... eventually just kept cycling down.

    Long after that, I simultaneously realized my son had lyme and I realized why the experimental protocol I was using has helped me (later found a test from 9 years ago showing I had Lyme tho nobody told me); plus many of his symptoms plus his reactions to meds were the same as mine.

    What will be left of symptoms is hard to guess at this point, once I'm done.

    Anyway, good luck to all of us in the coming year!

    all the best,
  8. Nanie46

    Nanie46 Moderator


    I agree with munch that the Dr cannot determine exactly when this man was infected by looking at his test result.

    Since Lyme is a clinical diagnosis, based on history and symptoms, it is likely that he was infected sometime before his fibromyalgia symptoms appeared.

    A person can be bitten at different times in their life, and their immune system can keep the infection in check until another bite happens or a stessful event occurs.

    Then the infection can flare and finally cause big problems.

    Or, a person can become very ill from the very first tick bite.

    It is also likely that this Dr is not lyme literate and will follow the IDSA guidelines which are very inadequate for treating lyme.

    This means he is likely to receive antibiotics in too low a dose for a short duration of a few weeks.

    Sometimes symptoms will ease a little with this, but then reappear soon after.

    I really urge your friend's husband to find a Lyme literate MD who follows ILADS guidelines through your local lyme support group, through the or on the Seeking a Doctor board at

    He can also post his questions on the Medical Questions board at There are alot of people there who have alot of experience.

    Of course there is a lyme board here too, but it is not very active.

    I hope he gets the help he needs so he does not have a life of misery.
  9. Nanie46

    Nanie46 Moderator


    Fibromyalgia certainly exists because many people have the pain, stiffness, tender points, etc.

    It is the cause of the fibromyalgia that is in question.

    For example, my daughter has migraines. Her migaines can be a diagnosis or a symptom.

    Her migraines are real, but they also have a cause, which most Dr's don't look for. They just give you meds to try to prevent or treat them.

    My daughter has lyme. Her migraines are a symptom of lyme.

    She still has migraines, but the cause is the bacteria Borrelia burgdorferi.

    Many people have fibromyalgia.

    Why is it that if the cause is found to be a virus that the diagnosis is then still called fibromyalgia? Should it be renamed to reflect the viral cause?

    People have lyme but still have insomnia, fatigue, fibromyalgia, migraines, trigeminal neuralgia and many other symptoms. These symptoms frequently become diagnoses.

    Fibromyalgia might be considered a diagnosis, but it is still a word that describes a certain set of symptoms and many lyme patients develop that set of symptoms.

    Regarding your girlfriend's sister who was "successfully treated" for lyme, I would urge her to find a Lyme literate MD and get an evaluation.

    Lyme is a clnical diagnosis based on history and symptoms. If she has fibromyalgia symptoms and had a known lyme diagnosis already, her fibro is likely a chronic lyme symptom.

    99% of Dr's undertreat for lyme because the follow the IDSA guidelines instead of ILADS guidelines, which is why there are so many people left with chronic illness.

    Please tell your girlfriends's sister to go to's Seeking a Doctor board and Medical Questions board and post any questions she may have.

    Please also give her this link...

    I really feel for your friend's sister...this happens to alot of people.[This Message was Edited on 01/02/2010]
  10. Nanie46

    Nanie46 Moderator

    I do not think that everyone with fibromyalgia has lyme disease.

    I do think that there are various infectious causes of fibromyalgia.

    For instance the cause of one person's fibromyalgia might be XMRV, another person's might be mycoplasma and bartonella, another's may be babesia, another person's is Borrelia burgdorferi, and others may be from various combinations of infectious agents.

    It can be a matter of semantics whether you say a person has fibromyalgia or a fibromyalgia- like syndrome.

    I have fibromyalgia according to all the criteria. People get too hung up on the name "lyme" which is really a city in CT.

    It is a bacteria that can cause a fibromyalgia syndrome.

    Many people do not understand this fact and therefore never even know to consider this bacteria as a cause.

    My LLMD codes my visits as Lyme disease, fibromyalgia, chronic fatigue syndrome.

    One diagnosis does not have to be changed because the offending bacteria was actually became an additional diagnosis.

    I don't understand your comparison to cancer.

    It is obvious that we will not agree on all points, so there is no use bantering back and forth about it.

    I did not start this post, btw.
    [This Message was Edited on 01/02/2010]
  11. Janalynn

    Janalynn New Member

    Thank you!!

    Happy New Year to you as well.

  12. victoria

    victoria New Member

    we're all too often hung up on 'names'.

    If medical testing was 100% reliable (which it's far from being), we'd likely find we all have different populations of bugs that are making us ill and a lot of overlaps between us all.

    So many of the diseases talked about here have such a similar 'laundry list' of symptoms, it is the reason why I think it makes it so difficult. For everyone, from the docs to the officials to the patients.

    I hate to see a 'name' split us as a population. I know I have more than Lyme. Trying to find out tho is almost impossible.

    Peace to all of us in the New Year, and here's to finding out more about the XMRV one way or another for starters.

    all the best,

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