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Man's Ravaging Lyme Disease Eludes Doctors for a Year

Discussion in 'Other Health News and Research' started by Ecoclimber, Jul 26, 2014.

  1. Ecoclimber

    Ecoclimber Senior Member

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    Man's Ravaging Lyme Disease Eludes Doctors for a Year
    Jul 8, 2014, 5:18 AM ET
    By SUSAN DONALDSON JAMES
    Susan Donaldson James More from Susan »

    [​IMG]
    Digital Reporter
    via Good Morning America

    [​IMG]
    Allen Bargfrede, seen with a deer tick, got Lyme disease in Spain, but couldn't get a definitive diagnosis when he returned to the United States.


    Allen Bargfrede said he was jumping into the shower when he spotted a tiny tick on his ankle that would change his life.

    “I washed it off and didn’t think about it anymore,” said the 39-year-old associate professor of music business at Berklee College of Music in Boston, who was in Spain at the time for a conference. “I remember thinking to myself, ‘I hope I don’t get sick from that.’”

    Two days later, Bargfrede said he developed the classic bull’s eye rash of Lyme disease, a bacterial infection transmitted through tick bites. The rash eventually gave way to a fever, cough and “strange headaches,” he said.

    “I had severe anxiety,” said Bargfrede, who was getting ready to head home to the U.S. when the symptoms began to worsen. “I was crazy scared to get on an airplane.”

    Bargfrede said it took nearly a year to confirm that he had Lyme disease after a string of “negative” tests, dangerous treatments and disbelief from most of his American doctors. ...

    ....According to the CDC, the cause of Lyme disease is the bacterium Borrelia burgdorferi, and the agency’s recommended test only detects that particular species. But Bargfrede’s illness was caused by Borrelia garinii, a species that’s prevalent in Europe but not in the United States.

    Bargfrede had a C6-based ELISA test, which is widely used in Europe and can detect as many as 18 species of the Borrelia bacterium. But the test is not used in the U.S., according to the CDC....


    ...An exemption in federal regulations allows many labs to offer Lyme tests without proof that they accurately identify the disease.....a cottage industry of more than 70 alternative tests has cropped up in labs around the country, some reputable and some not....

    ...Blood tests are not helpful in Lyme disease, according to Mead, because the Borrelia bacterium is a spirochete that quickly leaves the bloodstream and “burrows” into other parts of the body.....

    For the remaining article click on link here or above
    Also:
    ---------------------------------------------------------------------------------------------------------------------

    Additional cases of Lyme disease have been found in patients from several states in the southeastern U.S. by Professor Kerry Clark, associate professor of public health at the University of North Florida in Jacksonville, FL and his colleagues.

    These cases include two additional Lyme disease Borrelia species recently identified in patients in Florida and Georgia. Overall, 42 percent of 215 patients from southern states tested positive for some Lyme Borrelia species. More than 90 cases of Lyme infection were confirmed among patients from Florida, Georgia, North Carolina, Texas and Virginia.

    Also in Southern States two additional Lyme disease Borrelia species which have been discovered that produce Lyme disease: B. americana and B. andersonii. They provide additional evidence that multiple Lyme Borrelia species are associated with human disease in the U.S.including ,B. bissettii and Borrelia burgdorferi similar to the situation in Europe.

    Current testing methods and interpretation criteria, designed to detect just one species (B. burgdorferi), may explain many of the complaints involving the unreliability of Lyme disease tests in the U.S.

    Most of the patients included in Clark's study were suffering from a variety of chronic health problems, such as fatigue, headaches, muscle and joint pain and cognitive dysfunction. As a result, Clark's research may help millions of chronically ill people living in areas where Lyme disease wasn't previously recognized. Called "The New Great Imitator," Lyme disease is often mistaken for illnesses such as fibromyalgia, chronic fatigue syndrome, lupus, multiple sclerosis, rheumatoid arthritis, Lou Gehrig's disease (ALS), Parkinson's, ADHD and even Alzheimer's.

    University of North Florida. "Lyme disease confirmed in humans from southern states." ScienceDaily. ScienceDaily, 13 May 2014. www.sciencedaily.com/releases/2014/05/140513091115.htm>.

    ---------------------------------------------------------------------------------------------------------------------------
    Might as well get them all out there:

    Hartland Virus

    Rocky Mountain Spotted Fever
    A New Tick-Borne Parasite That Invades Red Blood Cells: Beware Babesiosis


    According to Columbia University’s comprehensive report, Babesiosis can be fatal in up to 20 percent of people with such immune-compromising problems.

    There is another thread on this subject that you may find interesting
    Lyme Disease: Discovery of other Reservoirs for ticks
     
    Last edited: Jul 27, 2014
    merylg, Sushi, Sidereal and 4 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    Very interesting ... at least one of the more recently discovered strains, Borrelia carolinensis, is carried by a certain type of mouse whose range includes southeastern Oklahoma. That's where I lived out in the woods when I was bitten repeatedly by ticks.

    Maybe that explains why my Western Blot was completely negative, since it only tests for specific type of Lyme, and I have a different version.
     
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  3. maryb

    maryb iherb code TAK122

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    @Valentijn
    my WB was positive, Infectolab negative and I live in the UK?!!!!
     
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  4. anciendaze

    anciendaze Senior Member

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    Note that the article does not mention borrelia miyamotoi, which was just found to be present in some U.S. patients in the last couple of years. While technically this causes relapsing fever instead of Lyme disease this is definitely a borreliosis. Arguments that it is very rare in humans here revolve around reported cases, which are hard to find when there is no reliable test, and doctors who listen to the C.D.C. believe the disease is not present.

    How widespread is the spirochete in the U.S.? You can find it around Lyme Connecticut in the same ticks, ixodes scapularis, and same mammalian host, peromyscus leukopus, as b. burghdorferi. You can find it in ixodes pacificus, the most common Lyme vector in California. You can find it in a high percentage of wild turkeys in Tennessee. This might also explain a number of cases resembling borreliosis around the Gulf of Mexico which have been dismissed as harmless because they did not test positive for b. burghdorferi.
     
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  5. Bob

    Bob

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  6. Valentijn

    Valentijn Activity Level: 3

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    Well in the US they certainly act as though only one variety exists in the entire world :rolleyes: According to some parts of wikipedia (and confirming what I'd heard elsewhere) at least 12 varieties of Borrelia are known to cause Lyme disease.
     
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  7. anciendaze

    anciendaze Senior Member

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    The problem has been that there is one species of spirochete which is commonly recognized and reported as the cause of Lyme disease in the U.S., borrelia burghdorferi.

    In Europe there is recognition that b. garinii and b. afzelli also cause human borreliosis. Recognition of b. miyamotoi in humans is more recent, but even so we are talking about 4 distinct borrelia species and over 100 strains -- without mentioning the new species discussed in that article. The problem of finding new species is that all borrelia spp. are difficult to culture. Those that might well cause chronic disease are especially difficult.

    There is a second problem with reported incidence, which is based on positive results from particular tests that may not be very sensitive. Literature distributed by the CDC concentrates on the visible rash, insisting that 80% of true Lyme cases exhibit this. (Other sources give much lower percentages.) The problem, even when doctors in a region have not been told to ignore a rash as a minor problem which is not true Lyme disease, is that very few doctors recognize that the visible signs usually precede seroconversion. This means the patient with the visible sign will often test negative, as happened in the case above. By the time the patient develops antibodies, the case may already have been dismissed as a "personal problem".
     
    Last edited: Jul 29, 2014
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  8. Martial

    Martial Senior Member

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    This is why blood tests are not the first measure of Illness with most LLMDs. I went around a year and a half with no proper diagnosis failing two western blot tests. Conventional Doctors would have left me for dead had I not demanded more specific things on my own (IgeneX Labs) testing; Of which came back indeterminate, meaning I had antibodies but not enough to be "CDC" Positive. Though based on symptoms and reaction to treatment it become acutely obvious, especially being bite multiple times growing up and through the years. Sadly this is also the same with the hundreds of other people I talk to as well. Some even go ten years without proper diagnosis or being misdiagnosed and never get better, until of course they finally find what they have and get proper treatment.
     
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  9. Hanna

    Hanna Senior Member

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    Knowledge about tick born disease is so poor in the medical profession. Babesia for example is still seen as a non-human disease in most of the countries. Or at best, they refer to a single strain that send you to the cemetery if not treated within 3-4 days (babesia divergens). The rest simply doesn't exist... except in your head. And the merry-go-round continues, and patients are left without treatment and considered hypochondriac. :(
     
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  10. Ren

    Ren Primum Non Nocere

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    Some EU countries' health systems don't recognize varieties of borrelia that exist beyond their country's political border. (This case wasn't borrelia - but I know of a person for example who became sick after visiting Africa, and they were completely blown off in their home country's healthcare system, and they finally had to go back to Africa to get treatment.)

    Re borrelia - If it hasn't been mentioned elsewhere: borrelia lonestari, associated with STARI (southern tick-associated rash illness) / Master's Disease (for Dr. Edwin Jordan Masters). B. Lonestari is transmitted by Amblyomma americanum.

    Amblyomma_americanum_tick.jpg amblyomma americanum life cycle.jpg amblyomma americanum distribution.jpg

    Treating physicians: Dr. Charles Crist
    http://drcharlescrist.net/about-dr-crist.html


    Also for Lyme (but what variety??):
    And "1st Infantry Division Soldier's Handbook to Iraq"

    And also for relapsing fever (post #4):
    Borrelia recurrentis - Louse-borne Relapsing Fever (LBRF)
    http://www.cdc.gov/relapsing-fever/resources/louse.html

    And Borrelia persica* plus several other species** - Tick-borne Relapsing Fever (TBRF)
    http://www.cdc.gov/relapsing-fever/index.html
    **http://wwwnc.cdc.gov/eid/article/17/7/10-1894_article

    See also: "Vector-borne Infectious Diseases in *Afghanistan" http://www.afpmb.org/sites/default/files/pubs/dveps/afghanistan.pdf

    relapsing fever i.JPG relapsing fever ii.JPG

    Also, from NYTimes:
    http://health.nytimes.com/health/guides/disease/relapsing-fever/overview.html#Treatment


    And "Relapsing Fever" Medscape:
    http://emedicine.medscape.com/article/227272-overview#a0104

    http://emedicine.medscape.com/article/227272-overview#a0199
     
    Last edited: Sep 19, 2014
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  11. PDXhausted

    PDXhausted Senior Member

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    Anyone know if Igenex or anyone else is in the process of developing tests for the other species?
     
  12. Martial

    Martial Senior Member

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    Igenex already tests for multiple strains.
     
  13. PDXhausted

    PDXhausted Senior Member

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    I only see them discuss B. burgdorferi on their test descriptions... Am I missing something or are there studies showing that we have similar antibodies to multiple species (ie western blot would cover multiple species)?
     
  14. Martial

    Martial Senior Member

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    There are multiple tests for a wide range of lyme and its co infections though they may not test some of the more rare strands. That being said blood testing is not nearly accurate enough with lyme because of all the false negatives, it is much more a clinical diagnosis unless you look for spirochetes and bacteria with a blood smear though even then its hit or miss. If you are really sick you just don't make antibodies after a certain point, usually tests are given to see how people progress as it turns more positive after certain months of treating.
     
  15. Ren

    Ren Primum Non Nocere

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    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC88929/
     
  16. Ren

    Ren Primum Non Nocere

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