Borrelia – In the Lymelight

March 8, 2013

Joel (Snowathlete) continues his series on zoonotic pathogens with a thorough examination of Borellia and Lyme disease – and their possible relevance for ME/CFS patients.

Borrelia

Borrelia spirochete
by Tina Carvalho, University of Hawaii at Manoa

Borrelia is the bacterium that causes borreliosis. It is a microscopic spiral-shaped parasite. There are many different species of Borrelia, some of which cause Lyme borreliosis, otherwise known as Lyme disease.

Borrelia is a zoonotic pathogen transmitted via a vector, usually a tick. There is evidence that other arthropods such as fleas, biting flies, mites and spiders also carry it, but so far there is only limited – mainly anecdotal – evidence of transmission to humans by non-tick arthropods.

Transmission from ticks appears to be the most common and important method of transmission, perhaps because ticks have a salivary protein called Salp15 which the Borrelia attaches to and which is thought to have immunosuppressive effects [1].  Following transmission, Borrelia can travel through the body quite rapidly, including into the central nervous system [2, 3].

How common is it?

Borreliosis, including Lyme and Lyme-like diseases, is one of the most prevalent infectious diseases in the world. In the USA it is the most commonly-reported vector-borne disease and the sixth most common disease nationally. It is more prevalent in the northeast and upper Midwest of the US; in Massachusetts, only hepatitis and HIV-AIDS are more common, despite under-reporting.

deer ticks in a row

Deer Ticks (Ixodes scapularis)
Photo by Sandy__R

In the past there has been a view that tick-borne infections, particularly Borrelia, are only common in the US and that other parts of the world don’t have a problem. This is simply not the case, with the UK, mainland Europe and Asia/Oceania also affected. The disease is the same, the ticks (and often the species of Borrelia) are different.

The existence of Lyme disease in Australia is controversial. The government has strict border controls to stop foreign insects and pathogens from entering the country, and the government have been reluctant to accept that there is a local problem, claiming that Borrelia infection occurs outside the country when people travel abroad. Most Lyme organizations in Australia dispute this and so does some of the medical literature [4].

Different strains

In North America, the predominant strain that causes Lyme disease is Borrelia burgdorferi. This strain also occurs in Europe and Asia, though B. garinii and B. afzelii are more common in these areas. Many other strains are known to infect humans and cause disease, some being suspected of causing Lyme, or Lyme-like illness. In particular, two other strains; B. spielmanii and B. bavariensis (both closely related to B. burgdorferi) are now widely acknowledged to cause Lyme disease.

Some strains have only been confirmed to cause borreliosis in the last few years, but have possibly been doing so for much longer [5].

Co-infections

Those diagnosed with Lyme disease often have co-infections, usually transmitted by the same tick that gave them Borrelia, and these co-infections can complicate disease and treatment. Some of the more common co-infections are Babesia, Rickettsia, Ehrlichia and Bartonella, and they can be serious in their own right. It is common for ticks to transmit multiple pathogens in one bite. Some of these other pathogens will be discussed in detail in future articles in the zoonotics series.

Symptoms

Borrelia colony

Borrelia spirochete agglomeration into colony-like masses.
Image courtesy of BioMed Central.

When you peruse a list of symptoms caused by Lyme disease or other borreliosis, you can’t help but notice that most of the symptoms in the list are the same, or similar, to those belonging to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia.

As with ME/CFS the disease tends to get worse over time with new symptoms developing. A quick Google search will return many pages with information on symptoms. As most readers will be familiar with the majority of these symptoms already, I won’t try to list them here. Instead, I will focus on those symptoms that are usually distinguishable from ME/CFS, though not everyone with Lyme disease will have these symptoms.

  • Lyme can cause paralysis of facial muscles, sometimes called Bell’s palsy. It tends to be on only one side of the face and often is not permanent.
  • Meningitis may also develop from Lyme, or from other forms of borreliosis, and is another symptom which is not as common in ME/CFS.
  • Atrophy of the skin may occur, especially with treatment as the Borrelia rise to the peripheral circulation to avoid antibiotic contact.

Having any of the above may signal that you have Lyme rather than ME/CFS, though not having them doesn’t necessarily rule out Lyme.

The other species of Borrelia that cause non-Lyme borreliosis tend to produce milder symptoms, the main presentation being relapsing fever or short-term virus-like illness, but some strains such as B. miyamotoi can, in some cases, cause severe disease [5].

Borrelia’s effect on the immune system and its ability to change form

Borrelia cyst

Borrelia cysti, covered by a thick membrane masking the contents of the cyst.
Image courtesy of BioMed Central.

Borrelia is reported to spread quickly to the central nervous system [2, 3] where it is harder to touch, and it is thought that the longer you’ve had it, the harder it is to get antibiotics to these places to kill it.

Genetically speaking, Borrelia is a very advanced bacterium [6]. It is pleomorphic, which means that it can change form from a spirochete to a cell-wall-deficient L-form [25] which is thought to be a mechanism of defense and antibiotic resistance [7, 8]. There is also evidence that Borrelia is able to create biofilm [9] which is thought to provide resistance to antibiotics and immune cells.

Borrelia is the only bacterium with 21 plasmids (B. burgdorferi), which gives it a diverse arsenal. Plasmids are pieces of DNA separate from the chromosomal nucleus of the cell, and they express surface-proteins that are essential to the bacteria’s pathogenicity [10].

Ötzi the Iceman

The remains of Ötzi the Iceman, a deceased human discovered in the Alps in 1991, were found to be infected with Borrelia burgdorferi [11, 12], showing that the bacteria has been infecting humans for at least 5300 years.

Nevertheless, there is some suggestion that Lyme disease has become more pathogenic recently as cases have increased so much in the last 50 years. This may in fact be down to improved recognition and reporting, but there is another theory that it is related to changes in the environment that have favored ticks.

Another interesting view is that Lyme may cause autoimmunity [13,14,15], which is interesting because autoimmune diseases appear to have been on the increase in the modern age as well, and some people believe ME/CFS to be an autoimmune disease (see my previous article here). Perhaps it is possible that Borrelia may be a trigger for ME/CFS autoimmunity?

How is it tested?

Otzi the Iceman

Otzi the Iceman – not your typical Lyme disease sufferer

You’d think that as they managed to detect Borrelia in Ötzi, a guy who’s been dead for more than five millennia, it should be a simple matter to detect it in living patients in the here and now, but it isn’t, and as a result the testing of Lyme disease is controversial. There are many who believe that Lyme tests often produce false-negatives, though some disagree about this, and then there is the question of false-positives too… So who is right?

A recent argument for the reliability of tests (at least with established infections) is made by John J Halperin et al [16]. However, there are those in the Lyme community that disagree with the science behind many of the conclusions in this article, and they may be right on some points. A key fact, I think, is that the Centers for Disease Control and Prevention (CDC) still says that Lyme diagnosis should not be based solely on test results, which does support the view that the tests are not reliable enough.

Questions aside over the reliability of the approved tests, there is evidence that those who are immunocompromised are more likely to turn up false-negatives for Lyme as the FDA approved tests look for antibodies. The problem is that those with a compromised immune system may not produce antibodies properly [17]. This could therefore be relevant for those of us with ME/CFS because of the evidence of immune dysfunction.

The FDA approved tests

The FDA currently recommends a two-step test process using two different types of test. If the patient is positive or equivocal in the first test then the second test is carried out. If either test is negative then the tests indicate that the patient does not have Lyme disease.

The first test is an enzyme-linked immunoassay (ELISA), which looks for antibodies against Borrelia in the blood. The second test is known as a western blot and looks for immunoglobulin M (IgM) and/or immunoglobulin G (IgG) antibodies.

The results of the approved western blot tests are themselves contentious, as the results that are returned have to be interpreted and the CDC seems to be quite conservative about what constitutes a positive result. Therefore, some people believe that some results that the CDC would deem negative should in fact be read as positive.

Non-approved tests

There are several non-approved tests, some using blood, some using other fluids, some looking for DNA, others for antibodies or antigens. But what is consistent is that they all cost money and because they are not FDA approved you may question their reliability, and even if you don’t, your doctor probably will. Some of the alternative tests on the market have at least been formally assessed and so you may find such published papers [18] useful in making your own judgment on the value of such tests.

Rather than trying to make such a judgment for you or trying to produce an exhaustive list, instead I am just going to mention some of the more commonly recommended tests, though I personally have no experience with any of these tests myself.

Infectolabs in Germany are often suggested, and seem to find a number of people positive who had previously tested negative using the FDA approved tests. Another lab often recommended is IgeneX in the US which also offers a variety of different tests for Borrelia.

Chronic Lyme

Chronic Lyme (or ‘post treatment Lyme disease syndrome’ as the CDC prefers to call it) is controversial. At the heart of it are two opposing organizations and the only thing they have in common is the letters they share in their acronyms. Although it may sound like the title of a bad B movie, a paper titled “Lyme disease: the next decade” [19] does a good job of explaining the differences between these two groups, but I will briefly summarize it here:

Representing the dark-side in our little B movie, we have the Infectious Diseases Society of America (IDSA) who essentially state that chronic Lyme doesn’t exist and have tried to limit treatment of the condition. Representing the light-side you have the International Lyme and Associated Diseases Society (ILADS – remember: the one with the L in the acronym is on the light-side) who speak up for the many thousands of people who have difficulty recovering from Lyme, even after treatment.

This study [20], which supports the views of the IDSA, claims that chronic Lyme doesn’t exist. Nevertheless, the evidence to the contrary is not insignificant, and there has even been litigation against the IDSA alleging conflicts of interest that may have influenced their position on chronic Lyme.

The thing is, it’s all too easy to dismiss an illness like this, isn’t it? That is, unless you’re the guy suffering from it, in which case you know all too well how real it is.

Whatever the reason – unidentified infection, bacterial remnants, autoimmunity, irreversible damage – I believe these people are sick, and just like ME/CFS, the illness is not given the attention it deserves.

How is Lyme disease treated?

lone star tick

lone-star tick (Amblyomma americanum)
by Elizabeth Nicodemus

Unsurprisingly, treatment is controversial too, with some believing that longer and stronger treatment is needed, especially in long established illness.

One of the important factors here is that Borrelia is known to replicate slowly, often only once or twice in 24 hours, whereas a bacterium such as staphylococcus (mentioned in my first article on zoonotics) would replicate around 70 times in 24 hours. This is important because many antibiotics target the cell wall of bacteria when they are dividing.

Antibiotics are bactericidal (they kill bacteria) or bacteriostatic (they inhibit replication), so bacteriostatic antibiotics given in short courses may not reduce Borrelia infection very much. Bactericidal antibiotics are probably better against Borrelia, but still the argument is made that low dose and short-course treatments are insufficient to kill most of the infection. This leads to some experts stating that long-term antibiotic treatment is required to control or eradicate Borrelia.

Those that are immunosuppressed by another illness can have more difficulty eradicating Borrelia and so it seems reasonable to suspect that anyone with both Borrelia and ME/CFS would have difficulty with treatment. Additionally, someone with Lyme may be more susceptible to ME/CFS and probably other illnesses, due to the immune impact of Lyme.

Different antibiotic treatments may be given to target Borrelia in its various guises and stages of illness. The treatment of choice is usually doxycycline, but other antibiotics including penicillin, amoxicillin and cefuroxime axetil are also commonly prescribed. In more stubborn cases cefotaxime or ceftriaxone may be given intravenously. Treatment in pregnancy is usually with erythromycin.

As well as ceftriaxone, minocycline or metronidazole may be used where infection of the brain is suspected as it crosses the blood-brain barrier. Additionally, there is evidence that metronidazole may be more effective against Borrelia in its cyst form [21].

What has this to do with ME/CFS?

Some people think that ME/CFS is actually undiagnosed Lyme. There is some limited evidence for that, such as a study from Poland which found that 50 percent of patients diagnosed with borreliosis or tickborne encephalitis could be identified as having CFS, concluding: “The findings suggest that the chronic fatigue syndrome is frequent among patients with a history of borreliosis.” [22]. This illustrates that tickborne zoonotics may be implicated in ME/CFS. Alternatively, it could be argued that this is just a result of the two illnesses presenting with similar symptomology.

Another study looked at gender differences and found that women were significantly more likely to develop chronic Lyme compared to men [23]. This is interesting, given the higher ratio of women to men with ME/CFS. Of course, correlation does not constitute evidence, and the finding may support other conclusions, such as the higher degree of women with autoimmune diseases.

A recent study provides evidence which suggests the two diseases are distinct by demonstrating that the cerebrospinal fluid was different in the two conditions [24].

As you can imagine, both sides continue to argue over whether the two illnesses are the same, related, or completely separate. I’m not sure there is enough evidence either way yet, but what is certain is that some people with ME/CFS do later turn out to have Lyme disease. In the last two months on the Phoenix Rising forum I have noticed at least three recent posts (Jan-Feb 2013) from ME/CFS sufferers who have been tested for Lyme and come up positive.

Then you have to bear in mind that Lyme is caused by several different species of Borrelia, as explained above, and several other species are suspected of causing Lyme. Each comes with its own flavor of Lyme disease, where symptoms differ slightly. Additionally, as stated earlier, some people infected with Borrelia don’t get Lyme disease but get other borreliosis illnesses, some of which come with overlapping symptoms to ME/CFS, or which may be present as co-infections.

And importantly, if the illnesses are distinct, then there is still no rule that says you can’t have ME/CFS and Lyme disease at the same time.

Not all species of Borrelia are tested for, and probably not all are even discovered yet, as most have only been discovered in the last two decades. Indeed, the Australian government agree that another pathogen infecting Australian ticks, either a novel Borrelia or some other zoonotic, may be the cause of Lyme-like disease in the country, so there is still room for a greater number of people to have Lyme, borreliosis, or some other tick-borne pathogen as the cause of their ME/CFS, or at least as a co-infection.

Whereas there is some scope for ME/CFS to turn out to be caused by Borrelia, I don’t think anyone can reasonably make that kind of claim yet. For the moment it is categorized as a different illness.  Nevertheless, I think the similarities are quite intriguing and at the very least some people labeled as having ME/CFS do have Lyme either instead of, or as well as, ME/CFS. I think it is good, therefore, that some ME/CFS doctors do test for it, and adjust their treatment protocols accordingly. Lerner, De Meirleir, probably one or two others, but it does appear that some ME/CFS doctors overlook it.

What should I do then? Get tested?

With the symptoms being similar and with the knowledge that some people with a diagnosis of ME/CFS do later test positive for Lyme, it has to be said that there is a case for getting tested. Most of us would probably bite your Borrelia-infested arm off if we could swap from an illness of unknown etiology to one of proven etiology, with some prospect of treatment.

The level of testing you go to is of course a different topic and there are no easy answers on how far you should pursue it, but it would seem prudent to at least have the standard FDA approved tests, and if you live in a region where Lyme is endemic, or you think you have some other reason to suspect that you might have been bitten, then you may want to explore test options further.

Joel was diagnosed with ME/CFS in 2009 but struggled with the illness for some time prior to this. He loves to write, and hopes to regain enough health to return to the career he loved and have his work published. 

OTHER ARTICLES BY THIS WRITER:

REFERENCES:

  1. Joppe W.R. Hovius, et al. Tick–host–pathogen interactions in Lyme borreliosis. 2007.
  2. Steer AC, et al. The Emergence of Lyme disease. 2004.
  3. Pachner AR, et al. Lyme neuroborreliosis: infection, immunity, and inflammation. 2007.
  4. Mayne PJ. Emerging incidence of Lyme borreliosis, babesiosis, bartonellosis, and granulocytic ehrlichiosis in Australia. 2011.
  5. Platonov AE, et al. Humans infected with relapsing fever spirochete Borrelia miyamotoi , Russia. 2011.
  6. Frazer, et al. Genomic sequence of a Lyme disease spirochaete, Borrelia burgdorferi. 1997.
  7. Elizabeth Fuller, et al. β-Lactam Resistance in Staphylococcus aureus Cells That Do Not Require a Cell Wall for Integrity. 2005.
  8. A Kersten, et al. Effects of penicillin, ceftriaxone, and doxycycline on morphology of Borrelia burgdorferi. 1995.
  9. Sapi E, et al. Characterization of Biofilm Formation by Borrelia burgdorferi In Vitro. 2012.
  10. Chan K, et al. Detection of established virulence genes and plasmids to differentiate Borrelia burgdorferi strains. 2012.
  11. Iceman Autopsy – National Geographic. 2011.
  12. Kean WF. The musculoskeletal abnormalities of the Similaun Iceman (“ÖTZI”): clues to chronic pain and possible treatments. 2013.
  13. Aberer E, et al. Molecular mimicry and Lyme borreliosis: a shared antigenic determinant between Borrelia burgdorferi and human tissue. 1989.
  14. Elizabeth S. Raveche, et al. Evidence of Borrelia Autoimmunity-Induced Component of Lyme Carditis and Arthritis. 2005.
  15. A M Ercolini, et al. The role of infections in autoimmune disease. 2009.
  16. John J Halperin et al. Common Misconceptions About Lyme Disease. 14 January 2013.
  17. van Dop WA, et al. Seronegative lyme neuroborreliosis in a patient using rituximab. 2013.
  18. Volker von Baehr et al. The Lymphocyte Transformation Test for Borrelia Detects Active Lyme Borreliosis and Verifies Effective Antibiotic Treatment. 2012.
  19. Raphael B Stricker, et al. Lyme disease: the next decade. 2011.
  20. Henry M Feder, Jr., et al. A Critical Appraisal of “Chronic Lyme Disease”. 2007.
  21. Brorson O et al. An in vitro study of the susceptibility of mobile and cystic forms of Borrelia burgdorferi to metronidazole. 1999.
  22. Gustaw K. Chronic fatigue syndrome following tick-borne diseases. 2003.
  23. Wormser GP, et al. Implications fo gender in chronic Lyme disease. 2009.
  24. Steven E Schutzer, et al. Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome. 2011.
  25. Mursic VP, et al. Formation and cultivation of Borrelia burgdorferi spheroplast-L-form variants. 1996.

IMAGES
Figures B and H originally published by BioMed Central. Journal of Neuroinflammation. Judith Miklossy, et al. 25 Sep 2008. Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis.
B. Dark field microscopy of Borrelia burgdorferi showing the usual spiral form of spirochetes and their agglomeration into colony-like masses.
H. Cystic form of Borrelia burgdoferi spirochetes, entirely covered by a thickened membrane masking the contents of the cyst.

FURTHER READING:

  1. A History of Cell Wall Deficient Bacteria: A Selection of Researchers Who Have Worked with the L-form.
  2. Vaccination against Lyme disease: past, present, and future. 2013.
  3. FDA recorded webinar on Lyme disease diagnostic research. 2012.

 

 

Support Phoenix Rising

donate

 

123 comments

{ 123 comments… read them below or add one }

Lotus97 March 8, 2013 at 8:48 pm

I've been waiting for this one. Can't wait to read it :D

GcMAF Australia March 8, 2013 at 9:24 pm

Hi
good timing
First International Tick Borne Diseases conference 16-17th Match in Sydney
http://www.karlmcmanusfoundation.org.au/
Programme
http://karlmcmanusfoundation.org.au/files/FinalProgrammeR1.pdf
Opened by Professor John Shine, Director of Karl McManus Foundation
he was given a Prime Minster Scientist of the Year
Saturday closed by Professor Chris Baggoley, Australian Government Chief Medical Officer.
Big hitters on the local science scene!!!!!!
Some body who shall remain nameless is presenting on GcMAF and Lyme (early days yet) and Inflammation Therapy.
371 Australians diagnosed, about 30 new dx each month.
Tremendous work by Lyme people to get this going.

GcMAF Australia March 8, 2013 at 9:35 pm
GcMAF Australia March 8, 2013 at 10:20 pm

Actually I reckon Icce man looks like that tick!!!

svetoslav80 March 9, 2013 at 2:08 am


The first test is an enzyme-linked immunoassay (ELISA), which looks for antibodies against Borrelia in the blood. The second test is known as a western blot and looks for immunoglobulin M (IgM) and/or immunoglobulin G (IgG) antibodies.

ELISA also looks for IgM and IgG. The difference between the two tests is that ELISA is very sensitive (picks up almost all cases) but not very specific (may show lyme even in some people who don't have the bacteria – a false positive result). And Western blot is so specific that it would almost never falsely show lyme.

Sushi March 9, 2013 at 3:58 am

About to get all those "controversial" tests!

Sushi

snowathlete March 9, 2013 at 7:59 am


Sushi

About to get all those "controversial" tests!

Sushi

Which ones are you getting Sushi?

snowathlete March 9, 2013 at 8:02 am


svetoslav80

ELISA also looks for IgM and IgG. The difference between the two tests is that ELISA is very sensitive (picks up almost all cases) but not very specific (may show lyme even in some people who don't have the bacteria – a false positive result). And Western blot is so specific that it would almost never falsely show lyme.

Thanks. I wasn't very clear but you're right of course both are looking for IgM and/or IgG, though not all of the tests look for both so it's worth checking exactly what your tests look for.

taniaaust1 March 9, 2013 at 8:03 am

The iceman made me laugh.. thanks Joel. Good article. The lab which tests for lyme here in Australia, say they are discovering new kinds of lyme here. (I cant think right now where the link is but will put it up when I find it again).

just a couple of corrections to your article…. as far as those things telling apart Lyme from ME/CFS.. 2 of the 3 of those are in fact also found in ME/CFS.
Dr Cheney on his DVDs talks about ME people often loosing their fingerprints due to skin atropies. And Bells Palsy is a well known complication of Mono (EBV) http://www.nlm.nih.gov/medlineplus/ency/article/000591.htm and as we know.. EBV is very common with ME. Ive had Bells Palsy with my ME (I had severe mono when a teen.. thou in the next week or two.. I will be being tested for lyme).

snowathlete March 9, 2013 at 8:05 am


GcMAF Australia

Actually I reckon Icce man looks like that tick!!!

I think he looks young for his age though.
Interestingly, one of the papers talks about little medicinal tattoos on his body around the points where he had lyme arthritis. So he had treatment, though probably not that successful.

Sushi March 9, 2013 at 8:50 am


snowathlete

Which ones are you getting Sushi?

Probably PCR, sequencing if that is positive and the Infectolabs LLT.

Sushi

snowathlete March 9, 2013 at 11:40 am


taniaaust1

The iceman made me laugh.. thanks Joel. Good article. The lab which tests for lyme here in Australia, say they are discovering new kinds of lyme here. (I cant think right now where the link is but will put it up when I find it again).

just a couple of corrections to your article…. as far as those things telling apart Lyme from ME/CFS.. 2 of the 3 of those are in fact also found in ME/CFS.
Dr Cheney on his DVDs talks about ME people often loosing their fingerprints due to skin atropies. And Bells Palsy is a well known complication of Mono (EBV) http://www.nlm.nih.gov/medlineplus/ency/article/000591.htm and as we know.. EBV is very common with ME. Ive had Bells Palsy with my ME (I had severe mono when a teen.. thou in the next week or two.. I will be being tested for lyme).

Thanks tania,
I'd be interested to hear more about that lab in Australia. It sounds quite promising because Lyme seems to be under reported everywhere but particularly in Australia where it sounds especially likley that there is novel species of Borrelia at work.

That is interesting to hear about skin atropies in ME/CFS, thanks for pointing that out. I had not heard that before. My guess is that its fairly uncommon in ME/CFS – do you know if thats right or not?

Good point about Bell's and EBV. It just goes to show how similar the symptoms of ME/CFS can be to Lyme disease and really only strengthens the view that we should be tested as best as we can, for Borrelia. I'm pleased to hear you're testing for it – which tests are you having done?

Simon March 9, 2013 at 12:03 pm

Thanks for the comprehensive article, snowathlete. I've only glanced at it so far, but appreciated the introduction to Lyme disease and Borrelia- I was always pretty hazy about this. And I had no idea how common the infection was in the US – 3rd most common illness in some states is amazing.

Ema March 9, 2013 at 1:06 pm

Most LLMDs consider ELISA testing for Lyme to be worthless. I would be very skeptical of a doctor who stopped investigations in the face of clinical symptoms indicative of Lyme after only ELISA testing.

I found this recap by Thomas Grier listing the issues with ELISA testing here:

http://owndoc.com/pdf/when-accurate-lyme-tests.pdf

 The ELISA test is useless within the first four weeks of a tick bite.
 The ELISA may not detect late infection because the bacteria can find immune privileged sites in
which to hide.
 The ELISA test is not a standardized test. The design of the test can vary greatly from lab to lab.
 The choice of antigens used in the test is derived from a laboratory strain B-31 instead of the naturally occurring wild strains. The B-31 strain is proving to be highly variable and changing. Using a high passage lab strain may be cheap and convenient, but not an accurate representation of the various strains of Borrelia found in nature.
 The accuracy of the test varies even on identical samples, meaning that even the labs themselves introduce a variable of inaccuracy by poor procedure, interpretation, or quality control.

Ema

Ema March 9, 2013 at 1:30 pm


svetoslav80

ELISA also looks for IgM and IgG. The difference between the two tests is that ELISA is very sensitive (picks up almost all cases) but not very specific (may show lyme even in some people who don't have the bacteria – a false positive result). And Western blot is so specific that it would almost never falsely show lyme.

While ELISA tests do rarely present false positives, false negatives are much more common.

Ema

snowathlete March 9, 2013 at 3:25 pm


Simon

Thanks for the comprehensive article, snowathlete. I've only glanced at it so far, but appreciated the introduction to Lyme disease and Borrelia- I was always pretty hazy about this. And I had no idea how common the infection was in the US – 3rd most common illness in some states is amazing.

Thanks, Simon. Yes, staggering how common it is in some parts and because of the under reporting, the real number is likely quite a bit higher. In the UK it varies a bit too, Wiltshire where I now live is a hot spot for it, for instance.

svetoslav80 March 9, 2013 at 5:51 pm


Ema

While ELISA tests do rarely present false positives, false negatives are much more common.
Ema

How do you know? Every site I visit says that ELISA test for lyme has high sensitivity and low specificity. Also, I just found out there's a relatively new ELISA test – C6 peptide ELISA, which, when performed on cerebrospinal fluid, has 95 % sensitivity (only 5% false negatives) and 85-95% specificity (5-15% false positives).

Ema March 9, 2013 at 7:53 pm


svetoslav80

How do you know? Every site I visit says that ELISA test for lyme has high sensitivity and low specificity. Also, I just found out there's a relatively new ELISA test – C6 peptide ELISA, which, when performed on cerebrospinal fluid, has 95 % sensitivity (only 5% false negatives) and 85-95% specificity (5-15% false positives).

I read a study that put the false positive rate at about 2%. Unfortunately, I cannot find the link on a quick search so I will have to dig further.

The false negative being high is due to the reasons Grier listed in my post above. That is why LLMDs very rarely use them in practice.

I don't see a test using cerebrospinal fluid becoming a useful screening tool for the masses unfortunately.

I still think an antibiotic challenge may be at least as useful as testing for Lyme given all the pitfalls that still exist. That is why even the CDC says not to rely on testing and that it must be a clinical diagnosis.

Ema

Lotus97 March 9, 2013 at 8:02 pm

Is there any consensus on whether chronic Lyme is Th1 or Th2 dominant? Buhner and others think it's Th1, but I spoke to someone here who is knowledgeable about this area and seemed to think many were Th2 dominant. Dr. Cheney and other CFS experts also think that many people with CFS (not Lyme specifically) are also Th2 dominant.

Ema March 9, 2013 at 8:17 pm

From the ILADS website:

"Lyme disease is a problematic diagnosis. The position adopted by the CDC makes it more complicated. Many patients do not elicit an antibody response great enough to be positive by currently available ELISA assays. In fact, studies conducted by the group responsible for Lyme Disease proficiency testing for the College of American Pathologists (CAP) concluded that the currently available ELISA assays for Lyme Disease do not have adequate sensitivity to be part of the two-tiered approach of the CDC/ASPHLD."

Ema March 9, 2013 at 8:37 pm

From LymeNetEurope:

http://www.lymeneteurope.org/info/laboratory-tests

"When a lab reports that their ELISA test has had high specificity and high sensitivity, it is usually interpreted by doctors as being a more accurate test, but the doctors don't know what the lab is actually measuring. One of the hidden problems of serologic Lyme tests is the fact that the tests must be primed with a source of bacteria to create the reactions with the patient's antibodies. To do this, virtually all labs rely on a laboratory strain of Bb known as strain B-31.Taking purified antigens from strain B-31 and injecting them into mice, they then can extract a monoclonal antibody to each antigen, or a polyvalent antibody soup. This antibody is concentrated and purified, and then added to the ELISA test to test the efficacy and performance of the test. Unlike the wild strains, B-31 grows well in culture, and this makes it a perfect choice as a consistent and inexpensive source of Bb. But the affinity the mouse monoclonal antibody has to B-31 antigen is quite different from the affinity the patients' antibodies have to the same antigen. This means the test may register as negative because the test cannot detect the slightly different antibody profile that a wild strain of Bb can produce. In other words, the labs are really comparing apples to oranges! This is why, when the American College of Pathologists used human sera to test the accuracy of 516 different laboratories ELISA tests nation wide, the overall accuracy was only 45%.

In the quest for specificity, most ELISA tests have become so specific that the test may fail to detect antibodies from related strains of Borrelia. This would include different genospecies that cause Lyme disease, as well as different Borrelia species that cause Tickborne Relapsing Fever. Would a cross reaction to the Borrelia species that cause Tick-borne Relapsing Fever be so bad?"

"In one year-long study by Dr. Sam Donta, MD, done on chronic Lyme patients, the initial ELISA tests proved to be more than 66+% inaccurate (1996 LDF Conference lecture). Other researchers have also found the ELISA tests to be inaccurate. Using a 45-panel diagnostic testing protocol from the NIH for testing the efficacy of the ELISA and Western Blot, researchers found the accuracy of the Lyme ELISA varied from about 5075%, and were routinely inconsistent. The CDC's ELISA test did no better on average than any other ELISA. It is the CDC ELISA test which is used for surveillance of emerging Lyme disease in the United States, yet the test was correct only about two out every three tests. Too often, a single negative ELISA test can prevent a sick patient from getting treatment, even despite having serious symptoms!"

GcMAF Australia March 10, 2013 at 12:34 am

We have sent letter to Australian Chief Medical officer with our demands
is in PDf
so i dont know where to post it here

snowathlete March 10, 2013 at 6:22 am


GcMAF Australia

We have sent letter to Australian Chief Medical officer with our demands
is in PDf
so i dont know where to post it here

That sounds great. Would love to see it. If it is online somewhere already, on another site, you could post a link to it. If not you can attach a file to a post (not sure what the file limits are).

Marlène March 10, 2013 at 10:04 am


taniaaust1

The iceman made me laugh.. thanks Joel. Good article. The lab which tests for lyme here in Australia, say they are discovering new kinds of lyme here. (I cant think right now where the link is but will put it up when I find it again).

just a couple of corrections to your article…. as far as those things telling apart Lyme from ME/CFS.. 2 of the 3 of those are in fact also found in ME/CFS.
Dr Cheney on his DVDs talks about ME people often loosing their fingerprints due to skin atropies. And Bells Palsy is a well known complication of Mono (EBV) http://www.nlm.nih.gov/medlineplus/ency/article/000591.htm and as we know.. EBV is very common with ME. Ive had Bells Palsy with my ME (I had severe mono when a teen.. thou in the next week or two.. I will be being tested for lyme).

FYI: Mono or EBV can be reactivated within 4 hours after a Lyme bite!

Marlène March 10, 2013 at 10:07 am

If you have bartonella (better known as cat scratch disease), you might not be able to produce antibodies to Lyme anymore.

Bartonella is hard to detect as well. It replicates very slowly and labs only test two species while over 10 species can make you sick with ME-like symptoms.

http://medmonthly.com/2012/07/bartonella-a-new-frontier-in-chronic-disease

Marlène March 10, 2013 at 10:09 am

If you like to figure out what symptoms belong to Lyme and co-infections, read this document or give it to your doctor: Just excellent and very readable!

Chronic Lyme Disease and Co-infections: Differential Diagnosis

Walter Berghoff*
Practice of Internal Medicine, Rheinbach, 53359, Germany
Full text
http://www.benthamscience.com/open/toneuj/articles/V006/SI0078TONEUJ/158TONEUJ.pdf

snowathlete March 10, 2013 at 12:37 pm


Marlène

FYI: Mono or EBV can be reactivated within 4 hours after a Lyme bite!

Thats interesting. Do you have a source? Not doubting what you're saying, just wouldnt mind reading more about it.

snowathlete March 10, 2013 at 12:42 pm


Marlène

If you have bartonella (better known as cat scratch disease), you might not be able to produce antibodies to Lyme anymore.

Bartonella is hard to detect as well. It replicates very slowly and labs only test two species while over 10 species can make you sick with ME-like symptoms.

http://medmonthly.com/2012/07/bartonella-a-new-frontier-in-chronic-disease

Bartonella is one of the zoonotics that I might cover in a future article. I expect a bunch of people have this instead of, or as well as their ME/CFS.

GcMAF Australia March 10, 2013 at 3:43 pm


snowathlete

That sounds great. Would love to see it. If it is online somewhere already, on another site, you could post a link to it. If not you can attach a file to a post (not sure what the file limits are).

GcMAF Australia March 11, 2013 at 1:56 am

damn it Janet
did not post
commercial channell doing stuff on Lyme in Sydney
looks like could coincide with conference
we may crack it bigtime this weekend
and Uni study on people with Lyme- not sure of the details
CHEERS

Marlène March 11, 2013 at 2:42 am


snowathlete

Thats interesting. Do you have a source? Not doubting what you're saying, just wouldnt mind reading more about it.

2003, Hulinska, Interaction of Borrelia burgdorferi sensu lato with Epstein-Barr virus in lymphoblastoid cells. Since the possibility of interruption of latent EBV infection has been suggested by the induction of the lytic virus cycle with chemical substances, other viruses, and by immunosuppression, we hypothesized that the same effect might happen in B. burgdorferi sensu lato infection as happens in Lyme disease patients with positive serology for both agents. We have observed EBV replication in lymphoblastoid cells after superinfection with B. garinii and B. afzelii strains after 1 and 4 h of their interaction. We found that viral and borrelial antigens persisted in the lymphoblasts for 3 and 4 days. Morphological and functional transformation of both agents facilitate their transfer to daughter cells. Association with lymphoblasts and internalization of B. garinii by tube phagocytosis increased replication of viruses more successfully than B. afzelii and chemical inductors. Demonstration of such findings must be interpreted cautiously, but may prove a mixed borrelial and viral cause of severe neurological disease.
http://www.ncbi.nlm.nih.gov/pubmed/12630667

Spring March 14, 2013 at 5:48 am

In the Netherlands I know at least 20 patients formerly diagnosed as ME/cfs who tested positive for Lyme on different lyme tests. There are also some who were negative on all kinds of testing. But if they have very low CD57 clinical diagnosis of lyme still can be made.

De Meirleir talks about it in his 12th video. It will be a while before that one is translated.

Shoesies March 14, 2013 at 4:18 pm


Spring

In the Netherlands I know at least 20 patients formerly diagnosed as ME/cfs who tested positive for Lyme on different lyme tests. There are also some who were negative on all kinds of testing. But if they have very low CD57 clinical diagnosis of lyme still can be made.

De Meirleir talks about it in his 12th video. It will be a while before that one is translated.

Waiting for that one!

merylg March 14, 2013 at 9:54 pm

http://www.karlmcmanusfoundation.org.au/

1st International Tick Borne Diseases Conference – Addressing the Complexities 15th – 17th March, 2013
Royal Prince Alfred Hospital
Sydney, Australia

Starts today! :thumbsup:

taniaaust1 March 15, 2013 at 3:34 am


Marlène

If you have bartonella (better known as cat scratch disease), you might not be able to produce antibodies to Lyme anymore.

Bartonella is hard to detect as well. It replicates very slowly and labs only test two species while over 10 species can make you sick with ME-like symptoms.

http://medmonthly.com/2012/07/bartonella-a-new-frontier-in-chronic-disease

I just looked up bartonella and wish I didnt. I didnt know before that its caused by cats. I once got bitten by a cat and it got infected to the point that the wound was very inflammed and ended up gooing everywhere due to infection and I had to take a course of antibiotics for that cat bite. I think I already had ME when I had that occur so wouldnt be surprised if I had yet another coexisting infection with everything else. Ive been getting lately one of my older ME symptoms of feeling like Ive got arthritis in a finger joint (years ago I used to have it badly in the finger joints and the pain would move around to various joints), its not there today but I had it again yesterday.

Sushi March 15, 2013 at 3:02 pm


taniaaust1

I just looked up bartonella and wish I didnt. I didnt know before that its caused by cats. I once got bitten by a cat and it got infected to the point that the wound was very inflammed and ended up gooing everywhere due to infection and I had to take a course of antibiotics for that cat bite. I think I already had ME when I had that occur so wouldnt be surprised if I had yet another coexisting infection with everything else. Ive been getting lately one of my older ME symptoms of feeling like Ive got arthritis in a finger joint (years ago I used to have it badly in the finger joints and the pain would move around to various joints), its not there today but I had it again yesterday.

Tania, maybe you should get checked to see whether you still have Bartonella. The good aspect is that if you do, it can be treated. The difficult aspect is that it is a hard treatment.

Best,
Sushi

snowathlete March 15, 2013 at 5:07 pm


taniaaust1

I just looked up bartonella and wish I didnt. I didnt know before that its caused by cats. I once got bitten by a cat and it got infected to the point that the wound was very inflammed and ended up gooing everywhere due to infection and I had to take a course of antibiotics for that cat bite. I think I already had ME when I had that occur so wouldnt be surprised if I had yet another coexisting infection with everything else. Ive been getting lately one of my older ME symptoms of feeling like Ive got arthritis in a finger joint (years ago I used to have it badly in the finger joints and the pain would move around to various joints), its not there today but I had it again yesterday.

Yeah, as Sushi says, worth getting checked. One of my earliest memories is being scratched badly by a cat. That was very sore. I also get a problem with some kind of arthritis in one of my finger joints. Only one and its worse sometimes than others.

taniaaust1 March 15, 2013 at 8:59 pm


Sushi

Tania, maybe you should get checked to see whether you still have Bartonella. The good aspect is that if you do, it can be treated. The difficult aspect is that it is a hard treatment.

Best,
Sushi

Ive printed off the "Bartonella: A new frontier in chronic disease" thing to take to doctors to try to convince one to test me next time I get to go to one. It says on that sheet "recommendations for medical practioners: . Consider testing patients at high risk who present with general rheumatic or neurological symptoms for Bartonella infection" (I get a ton of neuro symptoms including what appear to be seizures). It lists the Symptoms for bartonella as being "may range from reincuring fever, headaches, insomina, joint/muscle aches and pains, myalgia, neurocognitive dysfunction, seizures, vasculitis and vaso-proliferative tumors or lesions as well as more common lymphdenopathy and splenomegaly" (Ive italics all the symptoms there I get at times with the ME). One thing which is different to my ME then what many get was the VERY HIGH reincurring fevers I used to get (I still do get fevers at times but they are mild now) also the seizures (not related to the fevers, I think the seizure incidences thou may be related to the POTS).

The article says Bartonella has also been documented to cause osteomyelitis. I used to be in agony due to pain which felt like it was inside my bones (the doctors ignored it but it was very severe.. I used to cry from the pain in my bones so I think I probably had osteomyelitis at the time. Im not having much issues with the Bartonella symptoms now as my ME has changed (predominant POTS now).

I used to do a lot of animal rescue stuff with my main love being cats.. so been scatched a lot, not just that deep puncture cat bite which got infected). Hopefully I can convince a dr to get a test (not sure thou even if there is tests for this in Australia. The lab Im going to be doing my lyme test throu.. didnt have Bartonella on its list it sent out). I can do the lyme test in 1 week (been waiting for antimicrobial herb to get out of my body before doing the test).

Sushi March 15, 2013 at 9:38 pm


taniaaust1

Ive printed off the "Bartonella: A new frontier in chronic disease" thing to take to doctors to try to convince one to test me next time I get to go to one. It says on that sheet "recommendations for medical practioners: . Consider testing patients at high risk who present with general rheumatic or neurological symptoms for Bartonella infection" (I get a ton of neuro symptoms including what appear to be seizures). It lists the Symptoms for bartonella as being "may range from reincuring fever, headaches, insomina, joint/muscle aches and pains, myalgia, neurocognitive dysfunction, seizures, vasculitis and vaso-proliferative tumors or lesions as well as more common lymphdenopathy and splenomegaly" (Ive italics all the symptoms there I get at times with the ME). One thing which is different to my ME then what many get was the VERY HIGH reincurring fevers I used to get (I still do get fevers at times but they are mild now) also the seizures (not related to the fevers, I think the seizure incidences thou may be related to the POTS).

The article says Bartonella has also been documented to cause osteomyelitis. I used to be in agony due to pain which felt like it was inside my bones (the doctors ignored it but it was very severe.. I used to cry from the pain in my bones so I think I probably had osteomyelitis at the time. Im not having much issues with the Bartonella symptoms now as my ME has changed (predominant POTS now).

I used to do a lot of animal rescue stuff with my main love being cats.. so been scatched a lot, not just that deep puncture cat bite which got infected). Hopefully I can convince a dr to get a test (not sure thou even if there is tests for this in Australia. The lab Im going to be doing my lyme test throu.. didnt have Bartonella on its list it sent out). I can do the lyme test in 1 week (been waiting for antimicrobial herb to get out of my body before doing the test).

One of the sad things is that the standard tests only test for a couple of the strains of Bartonella and don't test for a strain that has been found in many ME patients. Not much you can do about it though without access to a lab that tests more strains.

Sushi

Sushi

Marlène March 16, 2013 at 2:35 am


Sushi
taniaaust1

Ive printed off the "Bartonella: A new frontier in chronic disease" thing to take to doctors to try to convince one to test me next time I get to go to one. It says on that sheet "recommendations for medical practioners: . Consider testing patients at high risk who present with general rheumatic or neurological symptoms for Bartonella infection" (I get a ton of neuro symptoms including what appear to be seizures). It lists the Symptoms for bartonella as being "may range from reincuring fever, headaches, insomina, joint/muscle aches and pains, myalgia, neurocognitive dysfunction, seizures, vasculitis and vaso-proliferative tumors or lesions as well as more common lymphdenopathy and splenomegaly" (Ive italics all the symptoms there I get at times with the ME). One thing which is different to my ME then what many get was the VERY HIGH reincurring fevers I used to get (I still do get fevers at times but they are mild now) also the seizures (not related to the fevers, I think the seizure incidences thou may be related to the POTS).

The article says Bartonella has also been documented to cause osteomyelitis. I used to be in agony due to pain which felt like it was inside my bones (the doctors ignored it but it was very severe.. I used to cry from the pain in my bones so I think I probably had osteomyelitis at the time. Im not having much issues with the Bartonella symptoms now as my ME has changed (predominant POTS now).

I used to do a lot of animal rescue stuff with my main love being cats.. so been scatched a lot, not just that deep puncture cat bite which got infected). Hopefully I can convince a dr to get a test (not sure thou even if there is tests for this in Australia. The lab Im going to be doing my lyme test throu.. didnt have Bartonella on its list it sent out). I can do the lyme test in 1 week (been waiting for antimicrobial herb to get out of my body before doing the test).

One of the sad things is that the standard tests only test for a couple of the strains of Bartonella and don't test for a strain that has been found in many ME patients. Not much you can do about it though without access to a lab that tests more strains.

Sushi

Sushi

Hello Tania
All strains of bartonella can be tested at Himmunitus in Belgium and Galaxy in the USA.
I had a bone tumor in '99 and the bone is still not healed, glomus tumor, thrombocytopenic purpura when I was pregnant, my newborn nearly died in IC due to an unknown infection (ahum) in 1995, my face looks as if I have lupus due to overvascularisation caused by bartonella, my bones hurt all the time as well, I lost weight as if I had aids, my chest hurts horribly, … I tested positive for bartonella in 2008 but the doctor said it was nothing because all other infections (Pfeiffer, CMV, …) were positive as well.
I know now that bartonella deadlocks your immune system and hell breaks loose. My last pregnancy was did the trick. Bartonella got the chance to break out again.

Ema March 16, 2013 at 8:00 am


taniaaust1

Ive printed off the "Bartonella: A new frontier in chronic disease" thing to take to doctors to try to convince one to test me next time I get to go to one. It says on that sheet "recommendations for medical practioners: . Consider testing patients at high risk who present with general rheumatic or neurological symptoms for Bartonella infection" (I get a ton of neuro symptoms including what appear to be seizures). It lists the Symptoms for bartonella as being "may range from reincuring fever, headaches, insomina, joint/muscle aches and pains, myalgia, neurocognitive dysfunction, seizures, vasculitis and vaso-proliferative tumors or lesions as well as more common lymphdenopathy and splenomegaly" (Ive italics all the symptoms there I get at times with the ME). One thing which is different to my ME then what many get was the VERY HIGH reincurring fevers I used to get (I still do get fevers at times but they are mild now) also the seizures (not related to the fevers, I think the seizure incidences thou may be related to the POTS).

The article says Bartonella has also been documented to cause osteomyelitis. I used to be in agony due to pain which felt like it was inside my bones (the doctors ignored it but it was very severe.. I used to cry from the pain in my bones so I think I probably had osteomyelitis at the time. Im not having much issues with the Bartonella symptoms now as my ME has changed (predominant POTS now).

I used to do a lot of animal rescue stuff with my main love being cats.. so been scatched a lot, not just that deep puncture cat bite which got infected). Hopefully I can convince a dr to get a test (not sure thou even if there is tests for this in Australia. The lab Im going to be doing my lyme test throu.. didnt have Bartonella on its list it sent out). I can do the lyme test in 1 week (been waiting for antimicrobial herb to get out of my body before doing the test).

With your history of cat scratches, if you can tolerate antibiotics, it might just be worth skipping the somewhat unreliable testing and doing an antibiotic challenge for a few months to see if you saw any improvement.

(Yes, long term antibiotics are not good for the gut but neither is a long standing untreated infection.)

Ema

Spring March 16, 2013 at 9:57 am

Back to Borrelia, it was very interesting what I think dr. Ostfeld said at the TBDA forum this week. That Borrelia changes its outer proteins over time in your body. So you wont make the 'typical' antibodies anymore, but maybe other antibodies. Thought he said they were looking for this in monkeys. It would explain the whole negative antibodytesting in chronic patients. And better testing could be developped. Happy to see this is investigated. It would be easier to acknowledge by stubborn doctors than the 'not making antibodies anymore due to impairment of the immunesystem' which is hard to prove.

Because it is hard to find Borrelia in humans they are also doing a study where they let 'clean' thicks feed on humans ith lyme to see if they can detect Borrelia in the thick afterwards. Yuck! Scary testing method!

snowathlete March 16, 2013 at 7:07 pm


Spring

Back to Borrelia, it was very interesting what I think dr. Ostfeld said at the TBDA forum this week. That Borrelia changes its outer proteins over time in your body. So you wont make the 'typical' antibodies anymore, but maybe other antibodies. Thought he said they were looking for this in monkeys. It would explain the whole negative antibodytesting in chronic patients. And better testing could be developped. Happy to see this is investigated. It would be easier to acknowledge by stubborn doctors than the 'not making antibodies anymore due to impairment of the immunesystem' which is hard to prove.

Because it is hard to find Borrelia in humans they are also doing a study where they let 'clean' thicks feed on humans ith lyme to see if they can detect Borrelia in the thick afterwards. Yuck! Scary testing method!

My bolding.

Seriously? Who is going to sign up for that?! :eek:
The tick may be clean off Borrelia, but what about other tick-borne pathogens, known and un-known?
Besides, even a 'clean' tick still passes you substances that affect your immune system, and thats shorly the last thing you need if you already have Lyme.

Shoesies March 17, 2013 at 8:10 am

That clean tick stuff is for the birds. It is criminal they are doing that to humans. BTW – who trusts researchers anymore anyway?

Enid March 18, 2013 at 7:53 am

As a silly comment can I add that the scientists involved in the various autopsies of the 5000 year old virtual mummy man in the Alps a little while ago found he suffered from Lyme disease. One feels bound to add if he can be tested so easily why not me !

Enid March 18, 2013 at 8:00 am

Sorry Snowathlete I see Otzi is part of your article (hadn't read through completely), nevertheless it might be more prevalent than they think.

GcMAF Australia March 18, 2013 at 7:19 pm

Tick conference
http://karlmcmanusfoundation.org.au/files/KMF_TBD2013_Booklet.pdf

I think that in the US at least 95% of CFS patyients have Lyme infections!!!
just a thought
Big happenings at the tick conference
looks like some good treatment options
think the worm may have turned
spoke to most of the Lyme doctors
Government committee formed with 3 big pinch hitters from the Lyme community
direct link straight to the cheif medical officer
will update when i can

Sushi March 18, 2013 at 7:54 pm


GcMAF Australia

Tick conference
http://karlmcmanusfoundation.org.au/files/KMF_TBD2013_Booklet.pdf

I think that in the US at least 95% of CFS patyients have Lyme infections!!!
just a thought….

I knew there must be some good reason to be from the US!

Sushi

GcMAF Australia March 18, 2013 at 9:59 pm


Sushi

I knew there must be some good reason to be from the US!

Sushi

Sushi

I knew there must be some good reason to be from the US!

Sushi

Ha ha ha
at least you know that you people are consistant

merylg March 20, 2013 at 2:05 pm

Lyme Disease is in Australia…

GcMAF Australia March 20, 2013 at 2:35 pm

Mualla Mcmanus
Dear all,
I would like to say that TBD2013 was a success. We had more Drs turning up and wanting to learn how to treat Lyme Disease in Australia. More have emailed me about not being able to attend but that they are interested in purchasing the DVD. It is very positive. AIMA and KMF are in partnership. We will be working to get as many Drs as possible to join an learn about Lyme. AIMA has 300 Drs as members. Revolution is underway!!!!! Change is happening!!!. Having Prof Baggoley at the conference was also a sign to Drs not to be afraid of being deregistered if they treat Lyme disease. In addition we were able to get the conference RACGP approved for CPD points. That means we are on the way of being accepted. So soon big changes will be underway.

From Mualla McManus

GcMAF Australia March 20, 2013 at 4:00 pm

there is a petition to the Aust government.
https://www.change.org/en-AU/petiti…d-treatment-of-lyme-disease-and-co-infections
please sign to help all CFS sufferers

snowathlete March 20, 2013 at 4:08 pm

Can anyone sign, or just Australians?

GcMAF Australia March 20, 2013 at 4:54 pm


snowathlete

Can anyone sign, or just Australians?

anybody
we appreciate it muchly

Sushi March 20, 2013 at 5:10 pm
Sushi March 20, 2013 at 5:24 pm


GcMAF Australia

Mualla Mcmanus
Dear all,
I would like to say that TBD2013 was a success. We had more Drs turning up and wanting to learn how to treat Lyme Disease in Australia. More have emailed me about not being able to attend but that they are interested in purchasing the DVD. It is very positive. AIMA and KMF are in partnership. We will be working to get as many Drs as possible to join an learn about Lyme. AIMA has 300 Drs as members. Revolution is underway!!!!! Change is happening!!!. Having Prof Baggoley at the conference was also a sign to Drs not to be afraid of being deregistered if they treat Lyme disease. In addition we were able to get the conference RACGP approved for CPD points. That means we are on the way of being accepted. So soon big changes will be underway.

From Mualla McManus

Thanks for the update!

Do you have specifics about what treatments are being used in Australia?

Sushi

GcMAF Australia March 20, 2013 at 5:29 pm


Sushi

Thanks for the update!

Do you have specifics about what treatments are being used in Australia?

Sushi

yes i am trying to collate everything
a small byte here
vitamin C, large doses – try increasing slowly until get like loose bowels
then just drop back a dose
diatomaceous earth which helps kill parasites- 4 days on then 3 days off

est_sunshine March 20, 2013 at 7:08 pm

I'd really love more info from the conference if you have any GC, I've just tested positive for Lyme and beginning abx treatment.

GcMAF Australia March 20, 2013 at 8:29 pm


est_sunshine

I'd really love more info from the conference if you have any GC, I've just tested positive for Lyme and beginning abx treatment.

This is not my work so I have no opinion on its success
It does contain some pertinant points though.
For example from John Coleman
Patients diagnosed with Lyme disease and coinfections have a number of protocols to choose from for reducing the bacterial load; most will have significant antimicrobial activity. Lysed bacteria release endotoxins that may be as dangerous as the original infection unless all detoxification pathways are optimised.
Many Lyme Borreliosis treating doctors consider Herxing to be a sign that detoxification is inadequate, the antimicrobial program is too vigorous, or both. In my own practice, I gain better results by beginning with quite robust detoxification activities, primarily patient driven.
A strict dietary regimen and clearing environmental toxins in the home are a first step. Efficient bowel function is very important and constipation may be ameliorated with vitamin C titrated to bowel tolerance (usually combined with magnesium), which also assists as an anti-inflammatory, antimicrobial, antioxidant and immune booster.

Dry skin brushing, Epsom salts baths or foot baths, oil pulling, soaked chia seeds, warm lemon water and cautious use of infrared saunas have been found to help. Detox therapies that I have effectively used while treating neurodegenerative and autoimmune disorders (where systemic toxicity is an exacerbating factor) include Heel Galium-Heel and Heel Detox Kit at extremely low doses (beginning at about 1/30 of the recommended
doses), and MH Enhance P2 Detox powder. Byron White Formulas (BWF) Selective detox formulas are proving to be very efficacious at enhancing detoxification and reducing Herx effects when started at very low doses and titrated to individual requirements.
The BWF have the advantage of being aimed at specific infections (Borrelia, Bartonella, etc), so are effective at removing endotoxins as those bacteria are lysed. Optimising detoxification pathways allows more vigorous antimicrobial activity with less distress; patient compliance is increased and health improvements more assured.

Clinical observations with those diagnosed with advanced neurodegenerative and autoimmune disorders had already shown the advantage of using vastly reduced doses of these remedies to provide effective therapy with little or no
aggravation. Indicative dosing comparisons include:
Aqua Hydration Formulas:
Recommended starting dose: 7 drops bd
My starting dose: 1 drop bd
Heel Galium-Heel:
Recommended starting dose: 10 drops tid
My starting dose: 1 drop daily
Herbal mixes:
Recommended starting dose: 5ml tid
My starting dose: 5 drops tid
Byron White Formulas:
Recommended starting dose: 1-2 drops bd
My starting dose: 1 drop daily

10-15% of debilitated patients will aggravate/ herx on even these low starting doses. For homeopathic remedies, the most effective dilution is K dilution (to be explained) while, with herbal remedies, the choices are either quantity
dilution or K dilution (to be compared)

Ecoclimber March 20, 2013 at 9:19 pm

Patients with Lyme disease can be misdiagnosed with Chronic Fatigue Syndrome!

A case of Lyme disease requiring over 1 year to diagnose at an infectious-disease clinic
Abstract

A 42-year-old woman presenting with years of fever and vague symptoms could not be satisfactorily diagnosed in physical examination or conventional workups. She was presumptively diagnosed with chronic fatigue syndrome and treated symptomatically. Fourteen months after the initial visit, she developed left facial palsy. Lyme disease serology was positive. Four weeks of oral amoxicillin ameliorated symptoms. Only 5 to 15 cases of Lyme disease are reported annually in Japan, mostly from the northeastern-most island of Hokkaido. It may occur anywhere in Japan, however; probably is underdiagnosed. Lyme disease may cause fevers of unknown origin. Astute clinical suspicion and appropriate workups are thus needed to diagnose this infection.

Eco

GcMAF Australia March 20, 2013 at 9:25 pm

There was a lot more said at the conference and so i am slowly getting it together

kolowesi March 21, 2013 at 10:58 am

Great article. I satisfy criteria for ME/CFS and for Lyme. Testing issues:
1. I had less than 1/4 normal absolute B cell count when tested at 18 months. Wouldn't this affect an antibody test?
2. My blood cells blow up starting at 2 hours. (Babesia?) Wouldn't this affect any test requiring whole blood, which is supposed to be good for 24 hours?
3. Western Blot, I had one band year 8 (under Montoya) Quest test. I had two bands (under Lerner) year 9 Labcorp. Neither doctor diagnosed Lyme or did further testing. Year 9 new doctor thought I had Lyme. Year 10, Igenex western blot positive IgM (by current CDC bands, one band short at the time) for Lyme.
4. Treatment can interfere with test results. Supposedly best to take antibiotics a few weeks to get the Lyme out of hiding, then go off, then test. I think.
5. Co-infections can interfere with test results. I have had reactivated EBV (positive IgM), active CMV and enterovirus (in stomach lining), positive HHV-6a according to research labs, positive mycolplasma by IgM. Many of these interfere with immune response or shift a person to Th-2 dominant.
6. Biofilms can affect test results. I take fibrinolytic enzymes an hour before antibiotics (pharma and herbal) and I get a herx if I'm doing this and have been off antibiotics, but not if I don't take the enzymes.

This is all just personal experience based on 15 years of trying to find out what's going on. Best to all who struggle and check hormones because you can have adrenal insufficiency, pituitary dysfunction and hormonal problems which will cause depression. That and lack of treatment, lack of support, and lack of money can lead a person to despair.

merylg March 29, 2013 at 3:30 am

Lyme Borrelia using Manganese to evade the immune system…

http://www.livescience.com/28120-lyme-disease-manganese.html?cmpid=514627

anniekim April 1, 2013 at 5:06 pm

I did some testing with infectolab recently and don't know what to make of my results (been ill for 14 years, currently bedridden). I had no igg antibodies to borrelia but did have igm ospc to borrelia garni and band 41 (which I know is not specific). My LTT elispot was negative.

I've read that you can have reactive igm's/repeatedly igms in late Lyme which then makes it impossible to differentiate between whether it is an early or late infection. Does anyone know if you have reactivating late igms as mentioned by Burrascno, would you then not have iggs? Are they mutually exclusive so to speak? Many thanks in advance.

GcMAF Australia April 1, 2013 at 9:10 pm


anniekim

I did some testing with infectolab recently and don't know what to make of my results (been ill for 14 years, currently bedridden). I had no igg antibodies to borrelia but did have igm ospc to borrelia garni and band 41 (which I know is not specific). My LTT elispot was negative.

I've read that you can have reactive igm's/repeatedly igms in late Lyme which then makes it impossible to differentiate between whether it is an early or late infection. Does anyone know if you have reactivating late igms as mentioned by Burrascno, would you then not have iggs? Are they mutually exclusive so to speak? Many thanks in advance.

Annie
i emailed this question to the CEO of infectolabs. maybe he will answer for you?

GcMAF

taniaaust1 April 2, 2013 at 12:19 am

All my samples to be tested for lyme currently on way to a lab interstate. Now I just got to wait to find out if they show up anything.

taniaaust1 April 2, 2013 at 12:26 am


Enid

As a silly comment can I add that the scientists involved in the various autopsies of the 5000 year old virtual mummy man in the Alps a little while ago found he suffered from Lyme disease. One feels bound to add if he can be tested so easily why not me !

I thought the same when I read about that.

taniaaust1 April 2, 2013 at 12:33 am


GcMAF Australia

Tick conference
http://karlmcmanusfoundation.org.au/files/KMF_TBD2013_Booklet.pdf

I think that in the US at least 95% of CFS patyients have Lyme infections!!!
just a thought
Big happenings at the tick conference
looks like some good treatment options
think the worm may have turned
spoke to most of the Lyme doctors
Government committee formed with 3 big pinch hitters from the Lyme community
direct link straight to the cheif medical officer
will update when i can

i just had a thought GcMAF.. I was thinking that seeing around 50% of CFS patients here in Sth Australia have been found to have Rickettsia (a finding by Dr John Graham who got hundreds of CFS patients tested).. I guess it is highly likely those ones also have lyme. (my past Rickettsia testing thou was negative)

GcMAF Australia April 2, 2013 at 1:00 am


taniaaust1

i just had a thought GcMAF.. I was thinking that seeing around 50% of CFS patients here in Sth Australia have been found to have Rickettsia (a finding by Dr John Graham who got hundreds of CFS patients tested).. I guess it is highly likely those ones also have lyme. (my past Rickettsia testing thou was negative)

I think I would agree Tania

anniekim April 2, 2013 at 4:26 am


GcMAF Australia

Annie
i emailed this question to the CEO of infectolabs. maybe he will answer for you?

GcMAF

Gcmaf Australia, that's really kind of you to email this question to the CEO of infectolabs. I hope he answers as I will be very interested to hear his reply. Many thanks

JT1024 April 2, 2013 at 12:26 pm

I'm trying to learn what I can about Lyme now. I tested positive by IGeneX for Lyme (Western Blot), Anaplasmosis, and Babesia in the last month.

In February, my tests included elevated titers for EBV, HHV-6, Mycoplasma, and Chlaymydia. I have not started antibiotics yet but feel like crap. Too tired and stupid to put one foot in front of the other right now.

My dog (my avatar) had anaplasmosis so it was not surprising when I tested positive as well.

GcMAF Australia April 2, 2013 at 4:33 pm


anniekim

Gcmaf Australia, that's really kind of you to email this question to the CEO of infectolabs. I hope he answers as I will be very interested to hear his reply. Many thanks

Here is the email
Here is some literature about isolated IgM as a sign for persisting Lyme:

Craft J, Fischer DK, Shimamoto GT, Steere AC. 1986. J. Clin.Invest.1978: 934-939. Antigens ofBorrellaburgdorferi Recognized during Lyme Disease appearance of a new Immunoglobulin M response and expansion of the immunoglobulin G response late in the illness​
Oksi J, Uksila J, Marjamäki M, NikoskelainenJ,Viljanen MK. 1995. J ClinMicrobiol. September: 33(9): 2260-2264. Antibodies against Whole SonicatedBorreliaburgdorferiSpirochetes, 41-Kilodalton Flagellin, and P39 Protein in Patientswith PCR- or Culture-ProvenLateLymeBorreliosis​
Kalish RA, McHugh G, Granquist J, Shea B, Ruthazer R, Steere AC. Clinical InfectiousDiseases. 2001: 33:780-785 PersistenceofImmunoglobulin M orImmunoglobulin G Antibody Responses toBorreliaburgdorferi 10–20 Years after ActiveLymeDisease​
Lomholt H. et al. 2000 Sep-Oct. Acta Derm. Venereol.: 80(5): 362-6. Long-termserologicalfollow-upofpatientstreatedforchroniccutaneousBorreliosisofculture-positive erythemamigrans​
Seriburi V, Ndukwe N, Chang Z, Cox ME, Wormser GP (2011) High frequencyoffalse positive IgM​
ImmunoblotsforBorreliaburgdorferi in Clinical Practice. ClinMicrobiolInfect , European Society of Clinical MicrobiologyandInfectiousDiseases. 10.1111/j.1469-0691.2011.03749.x​
Racine R., McLaughlin M. Jonesa DD. et al. (2011) IgMProductionbyBoneMarrowPlasmablasts​
Contributesto Long-Term ProtectionagainstIntracellularBacterialInfection. J Immunol 186, 1011-1021​
Prepublished online 8 http://www.jimmunol.org/content/186/2/1011 “Ourstudiesidentify a cellpopulationthatisresponsiblefortheIgMproduction in thebonemarrow, andtheyhighlight a novelroleforIgM in themaintenanceoflong-termimmunityduringintracellularbacterialinfection”.​
And here are my results from a study of 50 chronic Lyme patients:​

40 % Seronegativity​
28 % IgG-“Rest“-Titer​
22 % IgM- andIgG-Persistence​
10 % IsolatedIgM-Persistence​

Best regards
Armin

Sushi April 2, 2013 at 6:27 pm

GcMAF Australia

I know that is supposed to be English, but it is the kind of English that needs translation! :confused:

And you are a certified translator!

Soooo….

Sushi

GcMAF Australia April 2, 2013 at 9:00 pm

er
er..
I think that this says that in 50 chronic patients
40 had no antibodies
28 had IGG
22 had IgM and IgG
10 had IGM

Remember Lyme has no rules , well maybe it does just dont know them yet.
Or-
There are known unknowns
& unknown unknowns. ??/;)

Sushi April 2, 2013 at 9:05 pm


GcMAF Australia

er
er..
I think that this says that in 50 chronic patients
40 had no antibodies
28 had IGG
22 had IgM and IgG
10 had IGM
Remember Lyme has no rules , well maybe it does just dont know them yet.
Or-
There are known unknowns
& unknown unknowns. ??/;)

That is one tricky pathogen! 40 with no antibodies–there goes the most common testing….

Sushi

Shoesies April 3, 2013 at 7:09 am

Holy Toledo!

anniekim April 3, 2013 at 10:24 am

Thanks Gcmaf for that. One thing I don't understand the Seriburi study included in the list above seems to be a paper just warning that many people who don't have Lyme can have a false positive igm. This is my fear. Do you have any thoughts on that study?

If I had a much clearer positive, ie, a few positive igg bands, rather than one just one Lyme specific igm I.d think I'd feel more confident to try Lyme treatment. At the mo, I really don't know whether it's an avenue I should go down. Very confused at the mo.

Gcmaf, the figures you included above, from 50 patients etc.., which study is that in the list given above? Many thanks

EDIT:

please ignore last question, didn't read your post correctly, see it is the doctor's study

merylg April 23, 2013 at 10:46 pm
merylg May 2, 2013 at 6:03 am

http://www.lymepa.org/Chronic_Lyme_…osis_and_a_possible_cure_with_antibiotics.pdf

snowathlete May 2, 2013 at 9:51 am


merylg

http://www.lymepa.org/Chronic_Lyme_…osis_and_a_possible_cure_with_antibiotics.pdf

It's a very interesting hypothesis, but have they followed it up with the kinds of studies they talked about needing?

wallace May 2, 2013 at 12:45 pm

We need more information. I urge people to buy this. Tests for bartonella are useless:http://www.amazon.com/Healing-Lyme-…536&sr=1-1&keywords=stephen buhner bartonella

wallace May 2, 2013 at 12:46 pm

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma (No) [Paperback]

Stephen Harrod Buhner

(Author)
List Price: $19.95
Price: $11.33 & FREE Shipping on orders over $25. Details
You Save: $8.62 (43%)
Pre-order Price Guarantee. Learn more.
o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o

This title will be released on May 5, 2013.
Pre-order now.
Ships from and sold by Amazon.com. Gift-wrap available.

[​IMG]
Looking for the Audiobook Edition?
Tell us that you'd like this title to be produced as an audiobook, and we'll alert our colleagues at Audible.com. If you are the author or rights holder, let Audible help you produce the audiobook: Learn more at ACX.com.

Book Description

Release date: May 5, 2013 | Series: No
A guide to the natural treatment of two of the most common and damaging coinfections of Lyme disease–Bartonella and Mycoplasma
• Reveals how these conditions often go undiagnosed, complicate Lyme treatment, and cause a host of symptoms–from arthritis to severe brain dysfunction
• Outlines natural treatments for both infections, with herbs and supplements for specific symptoms and to combat overreactions of the immune system
• Reviews the latest scientific research on Bartonella and Mycoplasma coinfections and how treatment with antibiotics is often ineffective
Each year Harvard researchers estimate there are nearly 250,000 new Lyme disease infections–only 10 percent of which will be accurately diagnosed. One of the largest factors in misdiagnosis of Lyme is the presence of other tick-borne infections, which mask or aggravate the symptoms of Lyme disease as well as complicate treatment. Two of the most common and damaging Lyme coinfections are Bartonella and Mycoplasma. Nearly 35 million people in the United States are asymptomatically infected with each of these pathogens, and at least 10 percent will become symptomatic every year–with symptoms ranging from arthritis to severe brain dysfunction.
Distilling hundreds of peer-reviewed journal articles on the latest scientific research on Bartonella, Mycoplasma, and Lyme disease, Stephen Buhner examines the complex synergy between these infections and reveals how all three can go undiagnosed or resurface after antibiotic treatment. He explains how these coinfections create cytokine cascades in the body–essentially sending the immune system into an overblown, uncontrolled response in much the same way that rheumatoid arthritis or cancer can. Detailing effective natural holistic methods centered on herbs and supplements, such as the systemic antibacterial herb Sida acuta, which acts to protect blood cells from invading organisms, he reveals how to treat specific symptoms, interrupt the cytokine cascades, and bring the immune system back into balance as well as complement ongoing Lyme disease treatments.
Show less

snowathlete May 2, 2013 at 2:31 pm

I'm working on an article about Bartonella right now.

merylg May 5, 2013 at 6:22 am
JT1024 May 5, 2013 at 11:20 am

kolowesi

I have similar co-infections to yours and still need treatment for them. For me it has been overwhelming to figure out who to go to since LLMD's don't advertise.

There are three LLMD's within an hour of where I live but most don't take insurance. At least my state passed laws so physicians treating Lyme cannot be prosecuted for not abiding by IDSA guidelines.

Unfortunately, the insurance companies have still been denying payment for treatments so patients have born the burden of horrific costs.

I just read of a case where in one family, 4 of 5 children tested positive for Lyme yet the insurance company denied treatment of IV antibiotics for one daughter (pg 23 of state report "Lyme Disease in Massaaschusetts" published February 28th 2013).

The politics of chronic disease is truly scary.

merylg May 8, 2013 at 7:37 pm

Perth Today Tonight – Lyme Forum

merylg May 11, 2013 at 7:19 pm
merylg May 12, 2013 at 7:04 pm
merylg May 15, 2013 at 10:31 pm

Interviews recorded at the recent NSW Lyme protest outside NSW Health office, North Sydney.

https://soundcloud.com/after-dinner-mint/audio-interviews-from-5-lyme#play

snowathlete May 24, 2013 at 5:17 am

KDM thinks I have Borreliosis. I had a p41 reaction on the test (flagella) and immune results suggest it as well as some symptoms.

snowathlete May 26, 2013 at 10:32 am
JT1024 May 26, 2013 at 10:46 am

Just found a great deal of information here: http://www.lymebook.com/steven-harris

snowathlete May 26, 2013 at 11:29 am


JT1024

Just found a great deal of information here: http://www.lymebook.com/steven-harris

the stuff about TMJ is interesting. We have a thread on TMJ here somewhere…At the moment I have some pain in teeth and last week saw the dentist and he says there is no sign of infection there. He isn't sure what to make of it. I swear it is worse when I eat sugary things, and that perhaps makes sense with Borrelia…

Also my jaw clicks sometimes, and is often excrusiatingly painful in the morning when I first chew something. Pain last a few seconds, then gone for the day usually. Its right on the TMJ joint.

merylg June 6, 2013 at 3:25 pm
merylg July 26, 2013 at 9:03 am
merylg July 27, 2013 at 5:49 am
GcMAF Australia August 10, 2013 at 1:27 am

Here is an up date from Huffington

http://www.huffingtonpost.com/c-m-r…-edu_74_b_3729435.html?utm_hp_ref=email_share

merylg August 14, 2013 at 12:03 am
merylg August 14, 2013 at 5:02 am
Nielk August 14, 2013 at 6:21 am


snowathlete

the stuff about TMJ is interesting. We have a thread on TMJ here somewhere…At the moment I have some pain in teeth and last week saw the dentist and he says there is no sign of infection there. He isn't sure what to make of it. I swear it is worse when I eat sugary things, and that perhaps makes sense with Borrelia…

Also my jaw clicks sometimes, and is often excrusiatingly painful in the morning when I first chew something. Pain last a few seconds, then gone for the day usually. Its right on the TMJ joint.

I'm sorry Snow about your pains.:(

Previous post:

Next post: