Man's Ravaging Lyme Disease Eludes Doctors for a Year

[Ecoclimber]

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 »

Digital Reporter
via Good Morning America

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:
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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>.

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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

 

[Valentijn]

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.

 

[maryb]

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

 

[anciendaze]

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.

 

[Bob]

I'm not well-read about Lyme disease but I thought that there was only one bacteria that was widely associated with Lyme disease. So it surprised me that Europe test for more than one.

Prof Lipkin's been out hunting for more tick-related bacteria. It seems he might be finding some interesting stuff, according to his Stanford presentation video.
http://mecfs.stanford.edu/2014SymposiumVideo.html
http://forums.phoenixrising.me/inde...cfs-symposium-videos.31341/page-2#post-481759

 

[Valentijn]

I'm not well-read about Lyme disease but I thought that there was only one bacteria that was widely associated with Lyme disease. So it surprised me that Europe test for more than one.

Well in the US they certainly act as though only one variety exists in the entire world 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.

 

[anciendaze]

I'm not well-read about Lyme disease but I thought that there was only one bacteria that was widely associated with Lyme disease. So it surprised me that Europe test for more than one...

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".

 

[Martial]

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.

 

[Hanna]

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.

 

[Ren]

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.



Treating physicians: Dr. Charles Crist

Essentially, I am a Family Practice medical doctor whose primary focus is on patients with borreliosis or Masters Disease...I practice in Columbia, Missouri, USA.

...I attended medical school at the University of Missouri-Kansas City, and did my residency in Family Practice at St. John’s Mercy Medical Center in St. Louis, Missouri. After that I served three years on active duty in the United States Air Force and became an A-10 Flight Surgeon.

In 1988, after leaving the Air Force, I joined a group of medical doctors in Cape Girardeau, Missouri. The group included Edwin J. Masters, M.D., for whom Master’s disease is named. During the five years I practiced medicine with Dr. Masters, I became heavily involved with helping patients with Masters Disease, or more accurately with borreliosis. (Several different bacteria that are borrelia may cause this disease, so borreliosis is a better name.)

http://drcharlescrist.net/about-dr-crist.html


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

Diseases Transmitted by Insects. Sand fleas, sand flies, ticks, mosquitoes, and other insects in this area transmit potentially serious diseases such as malaria, dengue fever, yellow fever, lyme disease, and leishmaniasis. Symptoms usually include fever, headache, weakness, and muscle aches. Personnel should report any illness with fever to medical personnel. (pdf p.66)

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



Also, from NYTimes:

There are two major forms of relapsing fever:

Tick-borne relapsing fever (TBRF) is transmitted by the Ornithodoros tick and occurs in Africa, Spain, Saudi Arabia, Asia, and certain areas in the western United States and Canada. The bacteria species associated with TBRF are Borrelia duttoni, Borrelia hermsii, and Borrelia parkerii.

Louse-borne relapsing fever (LBRF) is transmitted by body lice and is most common in Asia, Africa, and Central and South America. The bacteria species associated with LBRF is Borrelia recurrentis.

In the United States, TBRF usually occurs west of the Mississippi River, particularly in the mountainous West and the high deserts and plains of the Southwest. In the mountains of California, Utah, Arizona, New Mexico, Colorado, Oregon, Washington, infections are usually caused by Borrelia hermsii and are often acquired in cabins in forests. It is possible that the risk now extends into the southeastern United States.

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


And "Relapsing Fever" Medscape:

Other described modes of transmission in the literature include blood transfusions, a laboratory worker who was bitten by an infected monkey with gingival bleeding, and intravenous drug use.[2] In rare cases, transplacental transmission has been reported.[7]

http://emedicine.medscape.com/article/227272-overview#a0104

TBRF has been reported in 14 states west of the Mississippi river, including Arizona, California, Colorado, Idaho, Kansas, Montana, Nevada, New Mexico, Oklahoma, Oregon, Texas, Utah, Washington, and Wyoming.[11]

...TBRF is endemic in Canada (southern portion of British Columbia), Mexico, Central and South America, central Asia, Africa, the Mediterranean region, and Russia

LBRF is endemic in Ethiopia and Sudan, especially during the rainy season. The disease typically occurs in areas of war, famine, mass migrations, or overcrowding.[4] Homeless people in crowded shelters are also at risk of LBRF. In a study of 930 homeless people in Marseilles, France, body lice were found in 22%, and immunoglobulin G (IgG) to B recurrentis was found in 15 individuals.[13]

http://emedicine.medscape.com/article/227272-overview#a0199

 

[PDXhausted]

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

 

[Martial]

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

Igenex already tests for multiple strains.

 

[PDXhausted]

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)?

 

[Martial]

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)?

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.

 

[Ren]

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)?

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

 

[Ren]

From 2010 but still relevant and very much worth remembering: 15-year-old dies from untreated Lyme:

https://translate.google.com/transl.../linus-15-dog-av-borrelia/&edit-text=&act=url