ALDA: 90% of patients dx with CFS, have Lyme disease

Discussion in 'Fibromyalgia Main Forum' started by karynwolfe, Jan 15, 2011.

  1. karynwolfe

    karynwolfe New Member



    "According to an informal study conducted by the American Lyme Disease Alliance (ALDA), most patients diagnosed with Chronic Fatigue Syndrome (CFS) are actually suffering from Lyme disease. In a study of 31 patients diagnosed with CFS, 28 patients, or 90.3%, were found to be ill as a result of Lyme disease. (1)"

    "The Centers for Disease Control (CDC) in Atlanta, Georgia, reports that "there is considerable under-reporting" of Lyme disease, maintaining that the actual infection rate may be 1.8 million, 10 times higher than the 180,000 cases currently reported. Dan Kinderleher, MD, an expert on Lyme disease, stated that the number of cases may be 100 times higher (18 million in the United States alone) than reported by the CDC. It is estimated that Lyme disease may be a contributing factor in more than 50% of chronically ill people. (1)"

    "In 1982 the agent responsible for Lyme disease was discovered by Dr. Willy Burgdorfer, isolating spirochetes belonging to the genus Borrelia from the mid-guts of ticks infecting deer, other wild animals and dogs. Spirochetes are spiral-shaped bacteria of very early origin in the evolutionary scheme. The causative organism was named Borrelia burgdorferi (Bb), after its discoverer. Since then, the number of reports of Lyme disease have increased so dramatically that today, Lyme disease is the most prevalent tick-borne illness in the United States."

    "The disease was first recognized in the United States in the small New England town of Lyme, Connecticut, and has since taken that name. Lyme disease was first studied in 1975 by Dr. Allen Steere, following a mysterious outbreak in that town of juvenile rheumatoid arthritis. The relationship between rheumatoid arthritis and a disease of another name may not at first be apparent but, as discussed more fully below, Lyme disease has the ability to mimic many other diseases, making diagnosis extremely difficult."
    [This Message was Edited on 01/15/2011]
  2. Nanie46

    Nanie46 Moderator

    Thanks for posting this Karyn...I'm not surprised at all.
  3. elliespad

    elliespad Member

    I sure hope I'm one of the 90% who actually have Lyme. I am at the beginning process of being evaluated by a Lyme Specialist.
  4. m1she11e

    m1she11e New Member

    I was diagnosed about 5 years ago by a "LLMD" as having Lyme. My Igenex test was a negative but I had "Lyme specific bands." I started oral antibiotics and was on several different ones for about 6 months with no "die off" and no improvement. I did get to know some others that were diagnosed with Lyme and stayed on the protocol longer and even went to another doctor who would do IV antibiotics. Some said they were some better but I didnt see any really recovering. One even had to had her gallbladder removed from all of the IV antibiotics. Treating Lyme is not easy or cheap either!! I too was excited when I first had a REAL diagnosis.

    The problem is that most "LLMD's" are diagnosing everyone with Lyme now regardless of a negative test. Even a negative Igenex. I dont know anyone who has CFS type of symptoms that has now been diagnosed with Lyme by a LLMD. I am glad that Lyme is being brought to light but it seems to be the in fashion diagnosis now. This makes it even more confusing to try to decide what to do to get well. Is Lyme just another pathogen that our messed immune systems let in?

    I dont know the answers here. After researching for months and agonizing over how to come up with the money for IV antibiotics to treat my supposed LYME, I just realized not many were getting well and it was just financially out of reach for me. I hate to see people mortgaging their houses to get LYME treatment only to not recover. (I have seen this too)

    So 90 percent of CFS'ers really have Lyme or has CFS allowed Lyme to be one more bug to take hold???? I just hate to see so many of us chasing our tails at this point and chasing mine just got me so much sicker!!

    This is not an easy one to figure out... :-(
  5. karynwolfe

    karynwolfe New Member

    This is people should handle any diagnosis that doesn't have a definitive test:
    Try treatment for it and see if it helps. If it doesn't, move on.

    Over 30% of people NEVER show positive on a test, and it's even a lower chance for people who (1) have had it a looonnng time, and/or (2) have other immune system problems, because they won't produce high-enough antibody levels to register as positive. It's unfortunate, but true. I have Lyme, had to get tested three times for it to show anything, and even then it showed the bare minimum. This is so common, which is why many doctors treat without the positive tests: If the patients have no response whatsoever, they probably do not have Lyme. But if they DO respond (like I do), that's one life saved from a progressive and fatal neurological disease.

    I agree that doctors do take advantage of people, no matter WHAT the illness may be, but it's important to understand that nearly all LLMDs are at the mercy of other organizations that go after their license just for trying to treat their patients, even if that doctor has literally saved their patient's life. This is not something most doctors want to risk, so it's less-than-likely a doctor will choose to be an LLMD just to scam patients. It happens, but it happens with any controversial illness. How many CFS doctors have I seen selling "muscle support supplements" for $30 a bottle when a person could eat one strawberry and get as much nutrition as what's in the pill. It's not the illness's fault, it's the doctor's fault, and we as the patients suffer from it.

    I'm sorry you've seen people mortgage their house to get treatment. I'm sure it happens with Lyme just as it happens to people with Cancer, who try to get the best treatment and just can't win. It's a terrible scenario and unfair. But you know what I hate to see? I hate to see people get diagnosed with Fibromyalgia, CFS, Multiple sclerosis, Parkinson's disease, ALS/Lou Gherig's disease, and die a miserable death from something that wasn't even investigated, because that's what -I- have seen. :(

    If anyone has symptoms and are getting no where with what they're doing for treatment, they need to weigh their options and act accordingly.
  6. gapsych

    gapsych New Member

    I think your story is very telling.

    If you do not recover after a certain amount of time taking antibiotics, there is probably something else going on besides Lyme.

    I think Lyme is important topic to bring up but when you hear that 90% of people with CFS really have Lyme, it's a pretty far out statement. The original article that stated this was an opinion piece.

    Based on this information, I would go with an Infectious Disease Doctor as you could be CDC positive. ID physicians are the ones who are backed by the science which shows not only that the use of long term antibiotics does not work but there are more risks than benefits.

    Studies have confirmed the above.

    An ID doctor will also consider the diagnosis in light of your risk factors and sometimes even try a round of antibiotics just in case.

    People have recovered after several rounds of antibiotics. If a patient doesn't then other conditions need to be looked into.

    When people continue the antibiotic treatment because they think they have Lyme, they may be missing valuable time finding out what is really going on.

    The risks of antibiotic resistance are also something to be considered.

    I am not posting this to start a debate but just giving you some information which may or may not be helpful as it looks like you have done a lot of research.

    I will not post further about this.

    Take care and good luck.

  7. karynwolfe

    karynwolfe New Member

    It IS a pretty far out statement. When dealing with something that has a definition as obscure as CFS, I'm sure any organization could do a study if they were selecting patients a certain way, and get it to where 90% of the people had Lyme (possibly by selecting participants in a certain part of the country, such as the Northeast). Or even do it the other way and find no one had Lyme. The criteria for CFS are so loose that anything in between would be possible. But the point was, people with a diagnosis of CFS do need to investigate Lyme disease.

    Some articles are suggesting that anywhere from 40-90% of people with Chronic Lyme are also testing positive for the XMRV virus! So those developments should be interesting to see. I reckon I'm a prime candidate for something like that...

    "ID physicians are the ones who are backed by the science which shows not only that the use of long term antibiotics does not work..."

    I think that depends on which science you're looking at. There is MORE than enough evidence that infection persists and causes outstanding disease, if people want to be bothered to look for it. It's there, it exists, if people really want to know.

    "The Case For Chronic Infection: Evidential persistence of Borrelia species post antibiotic exposure in vivo and in vitro.

    This article documents the available evidence supporting both the existence of Chronic Lyme Disease, as well as the persistence of the infection despite antibiotic therapy."

    This has 82 pages worth of science proving the extraordinary (and frightening) persistance of the Lyme disease bacteria.

    You can easily prove something doesn't exist if the studies exclude the possibility of it...but once it's been found, you can't simply shove it back in the box and pretend it's not there. You can't "unfind" the presence of persisting borrelia infection in someone's joints, heart, and brain. If it's there, it's there.

    It's amazing that there's no problem giving people antibiotics for years to treat tuberculosis, or even things like acne, but for some reason giving antibiotics to treat a disease that can mimick multiple sclerosis, leave you bedbound, and eventually kill you...well, certain organizations can easily turn the other direction and ignore that evidence.

    That said, antibiotic resistance IS real: Even with my own personal battles, I have to make sure I'm not given certain antibiotics (or combinations, or lackthereof) at the risk of making my own infections resistant to treatment (such as Rifampin).

    That is why one needs a rational professional (usually an LLMD, but sometimes an IDSA doctor, who started my own treatment) who is both knowledgable about the existence of chronic infections like Lyme, AND CAN ALSO weigh the risk-benefit ratio of what treatments would be best, or not best. And who also knows when to stop, if necessary. It's only damaging to everyone if the doctor swings too far in either direction.

    I think gapsych summed it up best with, "If you do not recover after a certain amount of time taking antibiotics, there is probably something else going on besides Lyme."

    Again, if someone DOESN'T make any recovery after adequate treatment, whether it's for Lyme or something else, they need to explore other avenues and not beat a dead horse, as the saying goes.

    Case in point: I entertained the idea of Lyme when my illness became inexplicably worse for "no reason" and nothing that usually helped me, was helping anymore. Then it was time to look into other causes. I hope we can all do that, and not just accept a definition of CFS if we've always been wondering if it's really CFS or not.
  8. gapsych

    gapsych New Member

    There has been speculation that a virus, possibly like XMRV making us more susceptible to Lyme and that "chronic Lyme" may be the virus and still playing the role even after the Lyme is taken care of.

    But again this is speculation, but interesting nevertheless.

    And you can't rule out that some people, for whatever reason, do not get better, and still have Lyme but don't respond to antibiotic therapy. I have heard that sometimes steroids can help, but don't quote me.

    I just don't think chronic Lyme is as prevalent as some say.

    I will try and read the references but not sure if I can handle 82 pages at the moment.

    Have you read the book by Amy Tam describine her experiences when she had Lyme Disease? She was to the point of having hallucinations but could tell if something was real or not her dogs reacted to what she was seeing. Wow!

    There is a post on PH about someone being misdiagnosed with CFS. It makes the same point you do.

    It can be so hard to sort all these things out and doubly hard when we are not well and have to do our own research.

    A very well written, informative post. Thanks.

    Take care.

  9. victoria

    victoria New Member

    sometimes we just have to take the chance and pay for things and hope they work. I've seen people with cancer do it, and still die, yet no one says to not try traditional treatment.

    Many of you know my son was dx'd with all the 5 CDC bands 2X in one year (2005), and had been steadily going downhill the year prior. He had already been unable to attend HS due to physical/cognitive problems for 2 years. He had many of my symptoms but then got way worse at the tender age of 16-17. After reading about Lyme, it was like a lightbulb going off. I took him 200 miles to see the nearest LLMD.

    After 3.5 years of oral abx, he is better, tho not well. Lyme was the only diagnosable problem by blood tests, tho it's likely (by symptoms and responses to different abx) that he also has had bartonella and babesiosis. Reliability for the blood tests for most of the possible co-infections is worse than for Lyme.

    We do not regret spending any of the money as I'm not sure he'd still be here quite honestly. It is true there is no guarantee of getting better, much less 100%; he is actually on disability despite the treatment, and continues to have various problems; but at least he is not wasting away before our eyes as he was.

    He chooses to not take abx at this time, his LLMD agreed. We realize he had it a long time prior to the point he reached where our doctor would be concerned.

    There are many documented cases of people who have taken abx for long-term/Chronic Lyme who have had their lives restored to varying degrees. However I compare treating Lyme & Co to treating cancer back in the 1950s or 60s... some get lucky, some do not, who knows why yet.

    Unfortunately key is finding a good doctor, which is always hard no matter what one's chronic or acute health problems are.


    [This Message was Edited on 01/18/2011]
  10. karynwolfe

    karynwolfe New Member

    "Reliability for the blood tests for most of the possible co-infections is worse than for Lyme."

    That's so true, vic. I know for Bartonellosis, specifically, there is less than a 20% chance that a chronic infection will be picked up by standard PCR or IgM/IgG levels. And this is a pathogen for which we've discovered over 20 new species within the past several years! (I have Bartonellosis, and it's a terrible infectious disease; I consider it far more damaging than even Lyme, because it replicates so much more quickly and is difficult to eradicate.)

    It used to be thought you could only get it from cats (Cat Scratch Disease), which is supposedly easily treated... And in truth, it usually is! But if you have any type of immune system problem, it can become chronic. Sometimes even without any prior problem. It is a stealth pathogen that is VERY good at living up to that name. Now we know a cat alone can transmit up to FIVE different species of bartonella, and it's not only transmissable through cats, but other species such as dogs and even by the insects (such as FLEAS) that carry the disease from host to host...

    January, 2009:
    "Researchers at North Carolina State University and the Centers for Disease Control and Prevention have produced the first link between a species of bacteria most commonly found in sheep and human illness.

    Dr. Edward Breitschwerdt . . . isolated the bacterium Bartonella melophagi from samples of human blood."

    "In nature, sheep are the most likely hosts for B. melophagi and transmission among sheep is thought to occur via a wingless fly known as a ked. The route(s) of transmission to humans is unknown.

    The blood samples Breitschwerdt and Maggi tested came from PREVIOUSLY HEALTHY WOMEN who were suffering from symptoms including muscle fatigue and weakness. One of the patients had been diagnosed with pericarditis, an inflammation of the membrane surrounding the heart. B. melophagi was present in blood samples from both women; Bartonella henselae, a strain of the bacterium which has been associated with human neurological illnesses and fatigue, was isolated from one of the samples.

    The research marks the first time that this particular strain of Bartonella has been cultured from human blood and associated with human illness.

    'Over the past decade, there has been a rapid expansion in the number of Bartonella species that are documented human pathogens,' Breitschwerdt says. 'From this preliminary data, it looks as though we may be able to add another species to that list.'

    'A small number of Bartonella in the bloodstream can cause infection, and this fact, coupled with the large variety of transmission routes by which people can become infected, make the diagnosis, treatment and prevention of the illnesses caused by this bacteria a real challenge,' Maggi adds. 'I think it's critical that we discover more about how this bacteria infects people, and how Bartonella infection relates to the subsequent development of progressive illnesses in humans.' "

  11. karynwolfe

    karynwolfe New Member

  12. Nanie46

    Nanie46 Moderator

    Clinical judgement is extremely important in the diagnosis and treatment of Lyme disease.

    Here is an excellent article:

  13. victoria

    victoria New Member

    when it comes down to it, no matter what one is treating when it comes to these problems, clinical judgement is the most important part ... which is where intelligence, clinical acumen, and experience all play a part.... and why there will always be disagreement as well.
  14. victoria

    victoria New Member

    which is exactly my point... one needs to find a doctor that seems trustworthy, but even then one has to use one's own judgement. Every doctor has their own biases unfortunately based on their own experiences.

    As a discussion point, I'm using a dx that shouldn't arouse any argument...
    when I was having problems with endometriosis and it was a new dx at the time, I spent a lot of money for bad advice and procedures from otherwise seemingly qualified doctors. Not only did I have to demand a laparascopy (after which the doctor lied about the severity of it).. I then almost ended up on danazol when simple diet control (specifically candida diet) provided the best pain control. That again was controversial to my doctors, probably still is, but without the Endometriosis Assoc. (a patient group), I'd have never guessed it would've helped.

    Many of us have been there/done that too many times, which is understandably & necessarily why we all tend to get a bit shy of jumping on bandwagons.

    We need to educate ourselves and be able to make a decision, &/or at least have an advocate that is unbiased to help. The less medicine I can take, the better, unless it is an obvious situation where more drastic steps need to be taken (as in my son's case).