A group of clever researchers from Cornell have studied the anti-neural antibody reactivity in the brain of patients who have “Post Lyme Disease Syndrome” as compared to healthy people who have recovered from Lyme disease (and a control group of healthy people who have not had Lyme disease) in an effort to analyze the immune system abnormalities with respect to lingering symptoms, and mechanical evidence of possible permanent damage to the brain and/or clues to treatment in the future.

“Post Lyme Disease Syndrome” is the politically correct diagnosis for a patient suffering with Lyme symptoms who has been treated in accordance with the “IDSA Guidelines.”

In truth, Chronic Lyme Disease and Post Lyme Disease Syndrome are indistinguishable from symptoms alone, in fact, I know many people who suffer from terrible rage over the light dose of antibiotics and short treatment as prescribed by IDSA that have left them completely disabled months or years later when it is possible they could have been completely cured with one or two more weeks of antibiotics according to some Lyme experts, or a stronger dosage.

As people are educating themselves, they will not stand by and watch their children forced out of school because of political posturing.  They want answers and they want them now.

In some ways you can view Post Lyme Disease Syndrome as the IDSA foot soldier’s label fro “I don’t know.”  We would all prefer intellectual honesty, but that is just never going to happen.

However, a study such as this looking into the effects of the anti-neural antibody reactivity in those with PLDS gives us the good news that at least someone is asking the questions!

So the good news, (and the bad news) is that the study revealed abnormal behavior in the brain in both the healthy and unhealthy “previous” Lyme patients by assessing the extent of cross-reactivity of the anti-borrelia antibodies towards brain protein.

In other words, the Lyme spirochetes drill into the brain in such a way that is not easily destroyed by short courses of antibiotics – hence the “Post Lyme Disease Syndrome”.  According to the study, “…the cross-reactivity was confirmed by immunohistochemical analysis, which showed anti-borrelia antibody binding to neurons and glial cells of the cerebral cortex, and the dorsal root ganglion.”

The researchers began with the following goals:

“The aim of this study was to begin a process of examining potential immune abnormalities in PLS that would be relevant to the reported neurologic and cognitive symptoms of affected patients.

“Results of the antibody analysis demonstrate the presence of a heightened, but apparently non-specific, production of antibodies to neural antigens in PLS. We speculate that these antibodies may either 1) be indicative of past injury to the nervous system during the active phase of the Lyme disease infection, resulting in the immune  system being exposed to and activated by novel self antigens, or 2) point to the enhanced B cell mitogenic effect of the borrelia pathogen in cases of delayed treatment and prolonged infection in genetically predisposed individuals.

“As such, this study points to the presence of a differential immune response in PLS in comparison to healthy individuals.

“Obviously, these findings are preliminary and must be extended in future studies using a larger number of subjects and additional cohorts, including healthy individuals with past Lyme arthritis and neurologic Lyme, as well as patients with similar complaints and no history of Lyme disease.

“At this juncture, it is logical to assume that further study of immune system response in PLS is likely to yield more clues about the etiopathogenesis of the disease and provide insights that may pave the way for developing safe and effective treatments.”

As the research continued, there were surprises along the way that showed borrellia activity in the brain well after the treatment in both the healthy and unhealthy subjects.

Doesn’t that sound like chronic Lyme disease?  If the infection is present, active and causing measurable reactions in the brain, are we imagining our symptoms?

The study continues:

“We can make some conjectures about the possible reasons for the observed increased antibody reactivity to self antigens in PLS.

“First, our experiments with affinity-purified antibodies generated in rabbits against B. burgdorferi antigens clearly show that anti-borrelia antibodies can cross-react with several neural proteins. A number of earlier studies have also demonstrated the potential for cross-reactivity of the anti-borrelia immune response towards neural antigens (Alaedini and Latov, 2005; Dai et al., 1993; Garcia-Monco et al., 1995; Maier et al., 2000; Sigal and Tatum, 1988).

“A portion of the observed anti-neural antibody reactivity in PLS patients is, therefore, likely to be the result of such cross-reactivity. However, the observed anti-neural antibody reactivity cannot be attributed solely to positive anti-borrelia serology, as increased anti-neural antibody reactivity was also seen in the borrelial seronegative PLS group.

“Second, considering the non-specific pattern of immunologic reactivity, the presence of these antibodies might signify an activated immunologic response to neural injury caused by the original borrelial infection or another disease. Tissue injury can, in fact, result in the release of auto-antigens and lead to an increase in post-translational modification of proteins and production of novel self-epitopes that elicit a strong immune response (Doyle and  Mamula, 2005).

“Third, borrelial infection has been shown to be a potent polyclonal B cell activator, capable of inducing the  non-specific proliferation and differentiation of antibody-secreting cells (Ma and Weis, 1993; Yang et al., 1992). The ability of borrelia to act as a B cell activator is likely to be enhanced the longer the infection is left untreated (Soulas et al., 2005).

“Therefore, the observed non-specific increase in autoreactive antibodies in PLS may be due to the mitogenic effect of the borrelial antigens, including OspA and OspB, and point to a possible association between post-Lyme disease symptoms and the duration of the course of active infection prior to treatment.

“Finally, immune abnormalities stemming from genetic predisposition might also play a significant role in the form of B cell and effector cell dysregulation that leads to elevated levels of released auto-antibodies (Hostmann et al., 2008).

“At this point, it is difficult to know what role, if any, the anti-neural antibodies might play in the pathogenesis of PLS. Several immune-mediated diseases of the nervous system, including multiple sclerosis, paraneoplastic nervous system disorders, autoimmune neuropathies, myasthenia gravis, and stiff-person syndrome, are associated with elevated levels of antibodies to neural antigens.

“A disease-causing role for such antibodies has been demonstrated in some of these disorders (Dalakas, 2008). In general, antibodies might have a pathogenic effect in the body through direct binding to a molecule and interference with its function, by activation of complement and initiation of an inflammatory response, or by inducing tissue injury through binding to Fc receptors on macrophages, neutrophils, and NK cells (Diamond et al., 2009).

“Considering the non-specific antibody response seen in the examined PLS cohort, however, a direct pathogenic role for the antibodies is doubtful. Nevertheless, even without a direct role, antibodies have the potential to be involved in disease mechanism through the activation of toll-like receptor pathways and secretion of various inflammatory molecules, which can affect the function of other cells responsible for neuro-psychiatric defects (Crow, 2007; Halperin, 2008; Nawa and Takei, 2006).

More sanctioned studies like this will spawn more…it is an event to be celebrated.

Dr Daniel Cameron is a name you can expect to hear more of.  He is the new “Rock Star” for chronic Lyme disease sufferers, and the cutting edge researchers around the world.

Dr. Daniel Cameron is a highly respected expert in the Lyme disease field, also, an actively practicing medical doctor in Mt. Kisco New York, as well as the author of over thirty scientific papers on Lyme disease.  Additionally, Dr. Cameron is the past President of ILADS (International Lyme and Associated Diseases) from October 2007 to October 2009, and on the front line; raising money for more research, securing financing, medical and political support as well as test subjects who are eager to join the data collection today, but also, finding patients who were treated in the past in a certain way and following their progress or treatment failure, and then putting the information together in such a way that even Dr. Steere will have a tough time refuting his meticulous research.

On June 18, 2010, Dr. Cameron released a scientific paper that is sending shock waves through the medical community for the rigorous standard of testing and reporting, with explosive conclusions which at the very least will demand further testing, especially when you begin to evaluate medical records showing the terrible suffering of children that could have been avoided with more proactive and serious treatment at the initial exposure to Lyme infection.

The report shows far greater suffering caused by delayed treatment, than would otherwise be the case, especially with neurological symptoms and arthritic symptoms and pain.   The results demand further investigation, in spite of the fact that the numbers of subjects cited in Dr. Cameron’s study are nothing to be sneezed at.

Considering the embarrassing lack of research thus far with respect to such an overwhelming and terrifying epidemic, along side the enormous political and medical debate that is bankrupting thousands and turning whole families out of their homes -  it is about time that more serious research be prioritized to stop the fractious and damaging posturing in favor of saving lives.

There are spiteful, mean-spirited people who will respond that Lyme disease does not cause death, but that death is caused by the hotly debated long-term antibiotic treatment and occasional flukes.  A spokesman from the IDSA (Infectious Disease Society of America) describes chronic Lyme disease as “the aches and pains of daily living.”   Certainly not a life threatening disease.  But those of us who have chronic Lyme disease already know how fragile our hold on life becomes.

Chronic Lyme disease takes lives even when there is a breathing shell left in place of the vibrantly active “pre-Lyme” person.  If life is defined by the heart beating perhaps there are many more with Lyme who suffer silently.  But I contend that those of us with bad cases of chronic Lyme are the “un-dead” – the “Lyme ghosts” living in agonizing pain – far, far beyond the aches and pains of daily living – unable to contribute to our families, friends, communities …in the meaningful way we once did.

And for children, who have yet to taste the pleasures of vibrant life – they don’t understand what they have lost.  So it is up to the adults to protect these victims and bring them back to health (God Bless Dr. Jones).

I think it is safe to say that Dr. Cameron is leading the way towards a new understanding od chronic Lyme disease, which is quite a coup when the entire IDSA is on record as not believing in the existence of chronic Lyme disease!

To read more about Dr. Cameron go to http://www.lymeproject.com/index.html.

In 2009, “Science Magazine” published a newly released paper from Whittemore Peterson Institute about the existence of XMRV, (which stands for xenotropic murine leukemia virus related virus,) which looked to be a causative agent in CFS, Fibromyalgia, Prostate Cancer and several other neuro-immune disorders.

The race was on.

All around the world there were doors opened for research scientists to apply this remarkable discovery and try to find better diagnostic tools, better treatment and of course – the great career maker – finding a cure.

Somehow, I am willing to bet that the excitement surrounding the original research had more to do with the potential impact on prostate cancer patients.

Why?

Well, if you aren’t familiar with “Osler’s Web: Inside The Labyrinth of the Chronic Fatigue Syndrome Epidemic”, then perhaps you are unaware of the government scandal that was exposed by author Hillary Johnson in 1996 proving fraud to the tune of many millions of dollars that had been earmarked from Congress to the CDC to research CFS/ME, but had been applied to other programs.  This involved cooked books and lying to Congress amongst many other crimes by an entire division at CDC.

Thankfully those funds have been accounted for and new programs put together under new management at the CDC.

So, up until the announcement last year by WPI, there had been very few breakthroughs regarding cause or cure, and the XMRV discovery gave the estimated 17  millions of sufferers hope for the first time in many years.

Now, a year later, the mud slinging has begun with small studies that seem designed to do nothing more than cast doubt on the original work at WPI.  With the close connections that have been drawn between CFS/ME, Fibromyalgia, RA, MS, Autism, chronic Lyme disease (Oooh, yes we have been told by the dark robed priests of the IDSA that there is no such thing as chronic Lyme disease!) by top researchers who have been written about elsewhere in this blog, one must question the validity of the mud-slingers, and wonder if continued funding will allow WPI and other reputable research firms to solve the mystery of XMRV – amazingly only the third type of virus known to mankind at this time.

So little is known just yet, but enough for some medical doctors who are themselves infected with chronic Lyme to consider jumping ship altogether and dividing Lyme sufferers into those who respond to antibiotics – those without XMRV, and those who don’t respond to antibiotics, don’t have Lyme and have XMRV instead which would explain quite a bit about the vast differences between treatment responses.

One such doctor is Jamie Deckoff-Jones, MD who tells her story convincingly at http://treatingxmrv.blogspot.com/2010/05/thoughts-about-chronic-lyme-disease.html

It has been so exciting to think that perhaps XMRV would give chronic Lyme, CFS/ME, Fibromyalgia and other chronic illnesses some hope for future help.  But it appears that the baby may be getting thrown out with the bath water.

I repeatedly try to reassure those who have failed on one or many protocols that it may just be the unique mixture of diseases and immune response, and/or immune strength.

It is devastating as this reader will tell you after her most recent commitment to Marshall Protocol.  Meet Mindy who has suffered unbearably.

♥♥

Hi there Jenna, I see that you have alot of information about the Marshall Protocol.

Let me tell you about some people I kinow that invested years of their lives on the protocol & starved their bodies of optimal levels of Vitamin D3.  I found these people on www.cpnhelp.org as I ended up there back in 06 when I found I had a raging infection of Chlamydia pneumoniae (not STD) named Chlamydia which is either Latin or Greek.

Chlamydia means to cloak, which is exactly what the bacteria does.  It hides from our immune system inside our cells & has several life phases. [See http://www.lymediseaseresource.com/Chlamydia_Pneumoniae.html]

It is highly contagious, and I got it after having a cough which then turned in to pneumonia.  About 70% of the population has it by their 50′s.  Doctors know little about it & just say, “…ahhh, the immune system will take care of it”

This is fine, if your immune system isn’t malfunctioning & testing super low as mine has been for years. [And so many of our immune systems are just ignored, and yet desperate for help!]

Anyway, the more I was involved in the protocol, the more horror stories I began to hear about others experience of the Marshall protocol treatment.

Also, terrible stories about the website which is heavily sensored making it impossible for people to actually relay their real life experiences during the protocol. Again, some testify to having excellent results with the Marshall protocol.

It is never a good idea to starve your body of an essential vitamin, mineral or anything we would naturally intake.  Low levels of vitamin D3 has been linked to diabetes, MS etc & the list is getting longer.

All the people who are not on the Stratton/Wheldone protocol for treatment of cpn at the site noted above are actually making good progress in the fight (some are, some definitely are not.)

I am one who is not.

I have been on abx for 3 years in June & have pulsed about 29times by then.

The science on the site is sound & this bacteria is another piece of the puzzle that is for sure.  I think you may find it quite interesting.

Like you Jenna, I have had Lyme for many years.  Here in Canada our diagnostics programs belong with the dinosaurs!  I can only say that I have been so blessed that my doc has stuck his neck out for me!  It is a miracle – praise God!

His wife & son both have Chronic Lyme & he has them in the US for treatment.  Unfortunately, I don’t have $20,000 to be able to follow his plan.

Anyway, I will likely stay on the abx to year end.  My disabilty insurer has suspended me & are probably going to cancel my benefits here soon.  I don’t have any money to say the least.

♥♥

Most of us can relate to the financial jam that Mindy has smacked into.  Although some never get disability, I know Mindy is truly grateful for the support she has received thus far, and frightened by what the future may hold.  She has not laid down and given up though, she continues to educate herself and try products that are affordable.

So, when you are feeling alone, and SO sick and tired – of being sick and tired, you can say a prayer for Mindy and remember…we need to stick together.

Back in 2007 when I met with a top specialist in one of Harvard’s teaching hospitals in the Boston area – who actually taught about infectious diseases at Harvard Medical School, I recall with such clarity (especially considering my Lyme fog) the complete shock I felt when he announced to me that he knew I had all the symptoms of Lyme disease, but that he did not believe in chronic Lyme disease.

He said, “I don’t know what you have, but I know that you DON’T have Lyme disease!”

Even more shocking, (but at the time so early in my major crash I didn’t understand the full implications of what the doctor was becoming so agitated about,) was when this hot shot doctor went into a full tirade about how Dr. Steere, the supposed top scientist and medical doctor in the field of Lyme disease had been receiving death threats.

Death threats…those words rolled around in my fog-filled brain without making any sense until I had a more sympathetic doctor explain it to me in a way I could understand:

The author of the death threats felt Dr. Steere was standing in the way of progress.  This seems so very obvious to me now!  But I still couldn’t understand what anyone could hope to achieve issuing death threats, no matter how persuasive it was written.

Then, a couple of days ago, I received a report from Under Our Skin Blog about the long awaited review of the IDSA guidelines and the following quote was written under the lead picture:

Gary Wormser, MD, lead author of the IDSA guidelines, attributes many chronic Lyme symptoms to “the aches and pains of daily living.”

The aches and pains of daily living…

The aches and pains of daily living…

What in the world was this expert doctor talking about?

After reviewing 3,000 pages of peer-reviewed evidence challenging advice in its 2006 Lyme disease medical guidelines, eight Infectious Diseases Society of America (IDSA) panelists voted to keep the 45-page document “as is.”

How could such a controversial issue – internationally not just nationally – how could there not be one single dissenting vote??

(I wrote on the event in the blog post “http://www.lymediseaseresource.com/wordpress/idsa-creates-black-thursday-for-those-suffering-with-chronic-lyme-disease.”)

Please don’t misunderstand my comments as condoning violence or the threat of violence in any way.  But I frequently wonder what kind of event and/or personal tragedy will be required to get through to these powerful “experts” in their field.

Clearly, any person whether a teacher, physicist, oncologist, politician…anyone who could describe even a fraction of Lyme sufferers as simply living with the aches and pains of daily living needs further information, evaluation, first hand information…

If the body of medical science that has set itself up as a protector of patients rights in a field where our nation is facing perhaps the largest medical crisis in our history, and these doctors are scrambling for cover OR jumping on the podium and making so much noise that they hope people will believe them.

They point to studies that are not remotely sufficient, and minimize symptoms that don’t fit into their definition of “aches and pains of daily living.

I try not to rant and rave in my blog posts, but when I read those comments, i just could not sit on the sidelines and watch as many suffering people are devastated by such callous remarks.

For those of us who have been badly ill and/or disabled, disregard such ignorance and remember, we will get through this together.

Lyme Disease sufferers need to be aware that having mercury poisoning and Lyme Disease at the same time can be a confusing, frustrating,scary experience.

We have ample evidence of the many ways in which we contract Lyme disease – and many ways which seem obvious but are very controversial.

Mercury poisoning is a different type of infection, and the methods for contracting mercury poisoning are incredibly varied.

Perhaps the top ways in which we are poisoned by mercury is from dental fillings.

With dental amalgams, mercury in vapor form is released when the teeth are ground together while chewing. This mercury is absorbed into blood and tissue–including the pituitary and hypothalamus glands. These two glands seem to play a part in FMS symptoms.

Many researchers believe that the brain dysfunction which causes fibromyalgia is a direct result of mercury toxicity. For this reason, some people with FMS have had their amalgam dental fillings replaced with other materials.

Some (not all) have reported improvement in their symptoms. However, removing silver fillings alone doesn’t completely solve the problem, since mercury has also become lodged in the body’s tissues.

However, there are also sources of mercury such as seafood, auto exhaust, pesticides, fertilizers, drinking water (tap and well), certain foods, fabric softeners, fish, talc, body powder, paint pigments and solvents, laxatives, cosmetics, mascara, floor waxes and polishes, wood preservatives, plumbing, adhesives, batteries and air conditioner filters.

As mentioned before, there is evidence that the Lyme Disease organism intentionally stores and sequesters mercury. This activity results in increased mercury concentrations in and near Lyme Disease colonies in the body—mercury and Lyme Disease are together in close quarters. For anyone afflicted with both mercury toxicity and Lyme Disease, the experience can be a frightening roller coaster ride.

Similarities between Chronic Lyme disease and Mercury poisoning are primarily focused on the painful and recurring symptoms of each illness.

Mercury poisoning often occurs with prolonged inhalation of its vapors and/or when mercury is ingested through the skin or internally through the gastrointestinal tract.

Acute poisoning occurs rarely, with large concentrations of mercury vapor in the air. There are headache, weakness, nausea, vomiting, fever. When you delete a poisoned atmosphere, and taking the necessary measures, all phenomena will quickly disappear within four to five days. In a few cases developed marked autonomic instability, asthenic feeling, sleep problems, shaking of hands and head.

In chronic poisoning, which occurs during long-term inhalation of even very small concentrations of mercury vapor, there is a general weakness, drowsiness, headache, depression, sweating, and recurrent muscle cramps.

While survey, reveals fine fingers’, eyelids, tongue tremor; persistent red dermographism (known as skin writing), the revival of tendon reflexes. Very often occur an increase in thyroid, dysfunction of sexual glands, dyspeptic disorders, stomach disorders and gum disease.

In more severe poisoning against a growing background of these poisoning symptoms, develop significant psyche changes: depression, obsessive feelings, visual and auditory hallucinations. An organic neurological symptom is increased.

There appears coarse tremor, which becomes more intention and extends to the muscles of the limbs, head and torso (mercury labeled tremor). Bells Palsy conditions ares are not uncommon.

Because the Lyme Disease bacteria and mercury typically occupy the same places in the body, the symptoms of each are very difficult to distinguish. Someone with Lyme Disease may not be aware that they have mercury poisoning and thus assume that all of their symptoms are Lyme Disease-related, when in reality, some are mercury symptoms.

A person who knows they have both mercury toxicity and Lyme Disease finds that the next challenge is to separate the symptoms and determine which are caused by which problem.

The presence of mercury in the living environment of the bacteria is advantageous to the bacteria. As the mercury-rich environment is altered, the infection responds with self-protective activities.

To make matters even more complicated, when Lyme Disease organisms are being killed or attacked, mercury symptoms may be altered as well.

As you manipulate the Lyme bacteria’s living environment and kill Lyme Disease organisms, mercury is mobilized and released which can cause symptoms to flare up unbearably.

Sometimes mercury is actually stored inside a spirochete or bacterial colony itself.  When that colony is disrupted or eradicated (with antibiotics or rife machines or some other anti-Lyme treatment), mercury is released. This results in an outbreak of both herx reaction symptoms and mercury mobilization symptoms.

In fact, many herx symptoms commonly experienced by Lyme Disease sufferers are actually symptoms of mercury mobilization. Because dying Lyme Disease organisms can release mercury, it is important to use a mercury detoxification protocol while undertaking anti-Lyme therapy to sop up the mercury that is released during the killing of Lyme Disease bacteria.

Mercury is a very strong immunosuppressant, and its presence in the body may mask inflammatory Lyme Disease symptoms. Lyme Disease patients may actually feel that their Lyme Disease symptoms are better when they are mercury-poisoned because the inflammatory response to Lyme Disease is reduced. When mercury is removed from the body, an individual may experience increased Lyme Disease symptoms and herx reactions because the immune system may begin to function properly again.

Another confusing similarity is that mercury chelators are not able to reach mercury stored inside Lyme Disease organisms until the organisms are killed and the mercury is released into circulation. Therefore, as long as there continues to be an active Lyme Disease infection, it is also likely that additional mercury is sequestered throughout the body. For this reason, mercury detoxification should not be considered to be finished until all Lyme Disease bacteria are completely eradicated. A mercury removal program is often needed for quite a long time, sometimes even years.

Lyme sufferers should consider carefully the possibility of mercury poisoning and that any stagnation in their healing progress may be, at least partially, a result of the presence of mercury in the body. It is essential first to find out if mercury is a problem, and then decide how to get rid of it.

Mercury chelation can help rid the body of toxicity, but can also cause unpleasant symptoms. Perhaps the most effective, the most thorough and healthy method for ridding your body of mercury poisoning or any kind of heavy metal is with Far Infared Saunas. LuxSpas Infared Saunas are made with Canadian spruce and cedar cabinetry with ionization, light therapy and music therapy.

Most cases of Lyme Disease will not show satisfactory improvement (regardless of which anti-Lyme therapies are used) unless mercury toxicity is addressed. Lyme Disease and Rife Machines includes a helpful chart that provides additional mercury detoxification resources, including contact information for a health-care practitioner who is willing to work with Lyme Disease sufferers toward the task of mercury detoxification.

On the other hand, a sauna may be used safely in the privacy of your own home every day for 20 minutes or 2 hours depending upon what your body feels comfortable with.  Not only will the poisonous metals be eradicated from your body, but all kinds of healthy detoxification can occur simultaneously, building strength, energy, and initiating healing on many levels of your body.

I will go on the record once more to say that it will be scientific researchers who will unlock the mystery of chronic Lyme disease (and in fact, if any of the IDSA panel had given even a cursory glance at the significant findings with respect to DNA/Lyme  discoveries there would have to be some kind of change to the IDSA Guidelines.)  I think it is appropriate to add the additional caveat:  Politicians will become involved whether they want to or not.

As the number of the infected soar, and the number of those who truly suffer from lack of care continues to spiral into numbers unknown and not counted, it is only a matter of time before the power is taken out of the hands of the obviously dishonest medical organization “The Infectious Disease Society of America”, and put into the hands of a third party without any interest, attachment to outcome, financial or otherwise.

(Remember that the pride of some of these medical doctors who have invested most of their careers to a certain expertise…the pride involved is so powerful it cannot be measured.)

Health.com reported after the press release on the official review.

“… the committee’s affirmation of the guidelines is seen by some to be a whitewash because, they claim, the review process was biased.

Dr. Robert Bransfield, president of the International Lyme and Associated Diseases Society, said: “How can there be such total consensus with any scientific issue? It’s beyond comprehension.”

Bransfield added, “It makes me wonder about the accuracy of the process. This is what everybody was expecting that they would do: a process that would rubber-stamp it and basically validate what was there before. It’s a concern because it does compromise the best interest of patients.”

Another critic, Dr. Raphael B. Stricker, a San Francisco physician who treats chronic Lyme disease, said that “when the panel votes eight-nothing on almost every single recommendation, that suggests that there is something wrong with the process.

“Until we get a really objective review by an objective panel that’s not all in Infectious Diseases Society of America’s pocket, you are going to get the kind of thing you see with this, and that’s a problem,” Stricker said.

Another excellent response to the IDSA vote comes from Dr. Elizabeth Maloney in The Star Tribune (.com):

Dr. Maloney says, “The IDSA is concerned about the “overuse” of antibiotic treatment in patients with persistent symptoms. It states that the evidence doesn’t support additional antibiotics and recommends against retreatment. The conclusions are based on the results of four retreatment trials funded by the National Institutes of Health. However, a careful reexamination of that evidence found that two of the studies were so improperly designed that they should be ignored. The other two demonstrated one patient type that benefited from additional treatment.

Thus, while the IDSA’s viewpoint was emphasized in the April 12 article, it isn’t scientifically valid. This may surprise the many physicians who follow the IDSA guidelines on Lyme disease. But science and medicine are supposed to be based on the facts, not on majority rule, and the evidence clearly demonstrates that retreatment helps some patients.

What we don’t know is who else should be offered additional antibiotic treatment and what form that treatment should take. Studies to answer these questions have yet to be done, but today’s patients can’t wait for tomorrow’s research.

Until we have answers, doctors caring for patients must do so to the best of their ability. Practice guidelines may present a reasonable starting point, but recommendations made on a generalized basis should never be substituted for the clinical judgment of the doctor treating an individual patient.

Treatment decisions should be based on the health, financial and quality-of-life costs associated with ongoing, untreated Lyme disease, as well as on the risks associated with treatment. All medical treatments carry risks; in general, the risks of carefully managed antibiotic treatment are low.

Finally, I wanted to share a very moving “open letter” published by “Under Our Skin’s Blog” and written by Jordan Fisher Smith, the eloquent park ranger featured in UNDER OUR SKIN and the author of the acclaimed naturalist book “Nature Noir,” has written this open letter to the Infectious Diseases Society of America (IDSA), in response to the society’s decision to make no changes to their controversial 2006 IDSA Lyme Disease guidelines:

To the Infectious Diseases Society of America:

Almost twelve years ago, I was bitten by a tick at work, and contracted Lyme Disease and Babesiosis. Because of the job you’ve done at diminishing the perception of danger about tick-borne disease and pressuring doctors who treat it aggressively out of business, it took a year and a half and a nationwide search to find a doctor who would treat me.

By then I was dreadfully ill, and as a result I lost my job and my 21-year career. In my first year of antibiotic treatment I got worse. I pursued aggressive treatment for another six years, during which time I got steadily, if slowly better. During this time one of my two doctors was forced out of practice as a result of your work. Thanks to my heroic physicians, I am recovered after a nine-year battle with tick-borne disease. And I am now contributing to society, working, and raising my kids.

Your ineffectiveness and the extent of your compromise with the Insurance and HMO businesses are noted. You and your work will be forgotten eventually, as we have forgotten the names of the opponents of Copernicus. Shame on you for the suffering you are causing on the way to your eventual obscurity as prideful scientists who called it tragically wrong. The monument to your life’s work is an unchecked epidemic.

—Jordan Fisher Smith, recovered victim of tick-borne disease

Thanks to Susan Jaggers, a friend of mine who does a wonderful job of staying up-to-date- on the issues that affect those of us with chronic Lyme disease, the following video, approximately 18 minutes, will give you a different kind of hope – one that I am very excited to share.

This presentation was delivered a year ago, and so perhaps you are familiar with the emerging science.  I for one would hope that in the last year much more would have been developed using this amazing breakthrough.

The breakthrough began in 2002, when molecular biologist Bonnie Bassler, bearing her microscope on a microbe that lives in the gut of fish, isolated an elusive molecule called AI-2, and uncovered the mechanism behind mysterious behavior called quorum sensing — or bacterial communication.

She showed that bacterial chatter is hardly exceptional or anomolous behavior, as was once thought — and in fact, most bacteria do it, and most do it all the time. (She calls the signaling molecules “bacterial Esperanto.”)

The discovery shows how cell populations use chemical powwows to stage attacks, evade immune systems and forge slimy defenses called biofilms. For that, she’s won a MacArthur “genius” grant — and is giving new hope to frustrated pharmacos seeking new weapons against drug-resistant superbugs.

Bassler teaches molecular biology at Princeton, where she continues her years-long study of V. harveyi, one such social microbe that is mainly responsible for glow-in-the-dark sushi.  Following is her lecture on “TED” – “On How Bacteria Talk”

According to “Lapis Light Natural Health”, a paper just published in the journal Brain, Behavior, and Immunity (also found in PubMed) highlights an important principal in clinical practice: even when an acute infection has been cleared by antimicrobial therapy, a chronic autoimmune disorder can develop due to immune dysregulation.

The authors begin by noting:

“Some Lyme disease patients report debilitating chronic symptoms of pain, fatigue, and cognitive deficits despite recommended courses of antibiotic treatment. The mechanisms responsible for these symptoms, collectively referred to as post-Lyme disease syndrome (PLS) or chronic Lyme disease, remain unclear. We investigated the presence of immune system abnormalities in PLS by assessing the levels of antibodies to neural proteins in patients and controls.”

Their data showed that…

“Anti-neural antibody reactivity was found to be significantly higher in the PLS group than in the post-Lyme healthy and normal healthy groups.”

Their conclusion:

“The results provide evidence for the existence of a differential immune system response in PLS, offering new clues about the etiopathogenesis of the disease that may prove useful in devising more effective treatment strategies.”

Indeed.

This is but one example of chronic conditions following acute infections, and why functional medicine practitioners are concerned with objectively assessing immune system integrity through cytokine analysis, white blood cell subset populations, vitamin D sufficiency, etc

Lyme researchers have understood for some time now that Lyme bacteria is vulnerable to hot temperatures, and for those of us who suffer with the chronic illness, we can feel the negative reaction to extremes in temperatures; hot or cold, and it is unpleasant to say the least.

I recently found a very interesting website called Chis-uk and found an excellent article about the relationship and possible therapy of heat for Lyme.  It also links Fibromyalgia, Chronic Fatigue Syndrome and Lyme disease.

Many are already aware of the connection but it is amazing how many people – even people who are suffering from all three – can’t (or won’t) make that connection.

The article, “Alternative Treatment for Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease” was written by Dr. Farah Khan, who is a New York licensed acupuncturist. She is an experienced herbalist, aromatherapist, and acupuncturist, and also practices a form of spiritual energy work that was passed on to her by a line of what she calls “Mexican curanderas.”  She writes:

“Heat can be helpful for treating Lyme Disease because the bacteria appears to prefer a low body temperature and is vulnerable to high heat.

There are many different sources of heat that can be used to treat this condition. Heat can also be helpful for people with Fibromyalgia and CFS who may actually have undiagnosed cases of Lyme Disease.

People usually feel a worsening of symptoms before they feel an improvement with the use of heat. My personal theory is that this is because the heat stirs up the bacteria before it kills it off or triggers the immune system to kill the bacteria off. This is speculative on my part.

The use of saunas can be very useful. A far infrared heat lamp can be used on problem areas. Hot baths taken for forty minutes at 102-104 degrees Fahrenheit have been shown to enhance immune system response in people with infectious diseases and auto-immune disorders in a research study done at Bastyr University.

A Chinese therapy called moxibustion can also be useful in warming problem areas. I do not recommend the use of cold packs or ice for pain in people with Lyme Disease, fibromyalgia, or CFS as these therapies reduce circulation to areas where circulation is likely to already be compromised. Also, the bacteria that causes Lyme Disease appears to prefer a cool environment, so cold therapy may cause real problems in people with this condition.” To read the whole article go here.

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My own experience with hot baths is that there is a very intense worsening of symptoms – sometimes even scary new symptoms with very hot baths.  I asked my LLD what to do – don’t laugh – he said, “Try making it less hot or staying in for a shorter time.”  You see how thick that brain fog can stretch!

In all seriousness, if your symptoms are already life threatening, you should be very careful with a hot bath, and preferably have someone with you just in case you need help getting out quickly.  Remember, the drain can be utilized in a pinch and cold water can and should be used if you feel any worsening of symptoms.  I am not a licensed medical practitioner, so this is just my own experience and personal opinion.

Another interesting medical paper I found (that is over ten years old) theorizes that heat makes antibiotic treatment more effective! [Where do these papers go??]

The study comes from our esteemed friends at Stony Brook State University back when Dr. Luft was in the Department of Ecology and Evolution.  There were five doctors who participated in the research that is summarized as follows:

“Using 3 different strains, the authors found that all strains were inhibited in growth up to 40 degrees C and killed at 42 degrees C. In addition the susceptibility of borrelia to bacteriocidal agents (penicillin and ceftriaxone were studied) increased logarithmically as temperature increased.

For example, the potency of these antibiotics increased 16 fold by elevating from 36 degrees to 38 degrees C. (for most of us these numbers convert to 96.8 degrees F and 100.4 degrees F). To get this effect, in the laboratory, the longer the exposure to heat, the more injury to borrelia. Two strains were vulnerable at lower temperatures. What does this mean for the victim of borreliosis?

Many have noted that their bodies are often at a lower temperature than others. Are borrelia taking advantage of victims by lowering the host temperature and thus replicating better? Can we help our bodies in ridding us of this plague by thermal means?

It is difficult to find any clinical studies utilizing heat treatment of Lyme disease except for the heat induced by infecting victims with malaria (Heimlich, NEJM 1990;322:1234-1235). This is reported to cause remission but not cure. It also is not accepted in the USA to infect victims with malaria. Can the same benefit be achieved by external heat without the risk of malaria?

It is found that immersion in hot tubs at 104 degrees F raises the core temperature (oral) by 1 degree for every 10 min immersion. Thus for the 36 degree C victim, 20 min immersion will result in the 38 degree C core temperature. After some time, a number of victims may tolerate up to 40 min of immersion which matches a 40 degree C or 104 degree F core temperature.

Thus for about 30 min the deep tissue niches of borrelia such as brain stem, ligaments, and joints are assisted in fighting borrelia with increased temperatures. For this time and some time afterward as the body returns to its baseline temperature, the borrelia are exposed theoretically to 16 to 160 times as much antibiotic.

Perhaps the slime coating around borrelia and the wall are rendered more porous and the antibiotics can penetrate inside the borrelia.

Perhaps the borrelia cannot modulate antigenicity well to rapid temperature changes at these levels.

Perhaps the flagella are not functioning at this temperature and borrelia can be “caught” by monocytes and ingested.

Whatever the mechanism of heat treatment, victims of borrelia usually report the following:

At first the heat is difficult to tolerate. Victims must start and advance slowly with others assisting in and out of the tub. Often pain and tingling are even worse in the tub. Many have “herxheimer” like reactions afterwards and these are reported to be marked.

However as time goes by, most who can continue the heat treatments, find that the symptoms while in the tub decrease and disappear and that the herxheimer after-effect decreases.

It is wise to drink liquids while in the tub and afterwards. Some try rapid cooling of the skin after 10 minutes of immersion with ice or hosing and then repeat the heat immersion. A longer immersion time can thus be endured and redirection of warmed skin blood to the core repeated. This is like exercising without a work load. Some have endured external temperature of the water at 110 degrees F to more hopefully eradicate skin borrelia but this seems extreme for most.

Would breathing oxygen supplementation with a face mask also improve inhibition or killing of borrelia? Oxygen makes logical sense since borrelia are anaerobic but lab testing of this hypothesis appears impossible.

Finally, it may be correct to take a bactericidal antibiotic as part of a combination protocol if heat treatment is used. Tyndallization is a past microbiological term for inducing microbes which are hidden in spores and cysts to exit their protected encysted stage. Borrelia are known to exist in encysted stages (Brorson- Transformation of cystic forms of Borrelia b to normal mobile spirochetes, Infection 1997;25:240-246.)

These motile forms might best be attacked by a bactericidal agent at this time. At cooler times, a bacteriostatic agent, might be appropriate to have “on board.” Inducing the borrelia to exit encysted forms in the skin and other niches might at first make the victim sicker, but the goal is to get in control of this microbe and after 3- 6 months reduce its presence and harmful influence on the host — us.

So far, antibiotic treatment alone, particularly in the shorter courses offered, has resulted in 50% of victims suffering from a persistent infection both in early localized borreliosis and later disseminated intracellular borreliosis.”

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I don’t know about you, but I am going to go take a hot bath.