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.

*

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.”

*

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

Some of you may have already read this interview conducted by Andy Wilson from the film crew of “Under Our Skin” on Feb, 28 in 2007, although the interview was not released until last month.   My computer crashed or I would have sent this out sooner.  The credibility of Dr. Burgdorfer  can not be questioned,  however, his knowledge of the disease epidemic is clearly censured. (See additional information at the end of this interview):

This interview with can also be viewed at the Under Our Skin Blog.

Andy Wilson: Could you describe the “Aha!” moment when you discovered the spirochete that causes Lyme disease?

Dr. Burgdorfer: I remember that time quite well. Allen Steere called me in the summer of 1977 and said, “Willy, I would like to discuss with you the methods you are using in dissecting ticks, and [looking] for microbial agents.” I sat with him about two hours that summer and told him over the phone how to dissect ticks. Then about two months later he called again, and I repeated, again, the same thing. And he finally said [in 1981], “Well, I’m willing to send you some serum [samples]. I want you to examine them for me.”

But it was not an “Aha” [moment]. It was a “What in the hell? What’s in that smear?” And then my work [on relapsing fever] as a Swiss student came back. [I said to myself], “Willy, these are spirochetes!” The slide showed long slender forms, a little bit curved, and they were only in the mid-part of the tick. Nowhere else.

There were so many people who said, “That is impossible Willie. You can’t get spirochetes out of hard-bodied ticks.” [But from my work on] relapsing fever ticks from Africa, I knew what a spirochete looked like. The Belgian Congo and Kenya are hot-spots for relapsing fever. Even Livingston [the African explorer and Scottish missionary] was exposed, and he called it “tick fever.”

Andy Wilson: And what did they call this spirochete?

Dr. Burgdorfer: I discovered the agent producing Lyme disease, so they called it Borrelia burgdorferi, after my name, Willy Burgdorfer. The initial findings were published right away in Science magazine. And even today, [this discovery] is considered a breakthrough in spirochetal research. There are many laboratories that are using our techniques, applying them to syphilis, because of similarities.

Andy Wilson: What are the similarities between Borrelia burgdorferi and syphilis?

Dr. Burgdorfer: The similarities that I know of are associated with the infection of the brain , the nervous system. The syphilis spirochete, Treponema pallidum has an affinity for nerve tissues. The Borrelia burgdorferi spirochete very likely has that too. Children are especially sensitive to Borrelia burgdorferi.

The Lyme disease spirochete is far more virulent than syphilis. We don’t know the end yet. And [we] can’t even make a [blood] smear with Borrelia burgdorferi and see the organism. It’s there. But you don’t see it. You cannot find this spirochete. Why not? After all, I have a sick person here. He is trembling all over. His spinal fluid is full of spirochetes. But when it comes to blood, it’s not there. So there is something associated with this organism that makes it different.

Andy Wilson: Why is Borrelia burgdorferi so hard to find in the body and culture outside the body?

Dr. Burgdorfer: Borrelia burgdorferi in the tissues of a patient is extremely difficult to demonstrate, because, first of all, you don’t like somebody to take samples out of your brain [to look] for spirochetes. The same with other tissues. Every system in your body can be infected with spirochete. But to prove that is extremely difficult. It demands surgical work, which is very expensive.

Andy Wilson: Are you a believer in the idea of persistent Lyme infections?

Dr. Burgdorfer: I am a believer in persistent infections because people suffering with Lyme disease, ten or fifteen or twenty years later, get sick [again]. Because it appears that this organism has the ability to be sequestered in tissues and [it] is possible that it could reappear, bringing back the clinical manifestations it caused in the first place. These are controversial issues for microbiologists, as well as the physicians who are asked to treat patients.

Andy Wilson: How do you feel about the controversy in the Lyme world?

Dr. Burgdorfer: The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research.

There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.”

Andy Wilson: What about the Lyme vaccine?

Dr. Burgdorfer: The [first generation] vaccine was not specific enough and not strong enough. So what is needed is additional work on a vaccine. What we have right now is a good example of work that goes to industry [too soon], and industry says, “Okay fine, get it out. “ And somebody says, well it’s too early. And it’s already on the market … and you see that every day …You see that this company is falling down, and these guys are realizing that the vaccine work is full of holes and never should have come out.

A lot of people are going to pay for that. They’re going to get sick with Lyme as a result of the vaccination. Then you’re in trouble.

Andy Wilson: What do you think about the relationship between Lyme and neuro-degenerative disease like Alzheimer’s and Parkinson’s disease?

Dr. Burgdorfer: Right now they are building a research center at Columbia University, to study this possibility, because many physicians believe that neurological manifestations, regardless [of] what type, are typical for Lyme disease. [NOTE: This center has been built - see link above.]

Andy Wilson: What do you most regret about what has happened, in the aftermath of your discovery?

Dr. Burgdorfer: I most regret that the technology used to diagnose and to even treat Lyme disease wasn’t worked all the way through. It [wa s based on] only a few results, then published. And later on, people [wanted] to take them back.

I think Borrelia burgdorferi is too serious an [infectious] agent to play with, and with many laboratories, the severity of the disease is overlooked.

Andy Wilson: What’s the next stage of research?

Dr.. Burgdorfer: Neurological manifestations have to be the next stage of research. Also [Borrelia burgdorferi’s] antigenicity. Ecologically, the diversification of Borrelia is tremendous. Because of the spirochete’s ability to change—to change its physiology, to change its “antigenic” structure for instance—a spirochete may be capable of producing disease or not.

And one piece of work that needs to be done, that has lately been neglected, is development of the spirochete—whether it transfers [genes via] fission, or whether individual spirochetes have the ability to break into spheres or particles. We don’t know yet how they do it but they do. They go into the lymphocytes, they go into every tissue.

Just because we have not seen [them], does not mean that they are not there. Once the immune response is down, are [they] capable of re-entering the bloodstream and producing disease?

Andy Wilson: Do you have Lyme?

Dr. Burgdorfer: No. I don’t.. But I say that cautiously. Because I have been working with Lyme disease ever since 1981.

_______

CENSURE:

The team who filmed UNDER OUR SKIN had an unexpected visitor from a top researcher at the nearby Rocky Mountain Laboratories, a biolevel-4 NIH research facility.

Standing at the door, the government official said, “I’ve been told that I need to supervise this interview. This comes from the highest levels. There are things that Willy can’t talk about.”

The film crew was incredulous.  “We were stunned. After all, Dr. Burgdorfer had been retired from the lab since 1986. We were there to talk t o a private citizen, about the history of a very public discovery that had put him on the short list for a Nobel Prize. Earlier that year, the NIH had refused our requests to interview any of their Lyme researchers. What was going on? Why would the NIH want to censor information about the fastest growing bug-borne disease in the United States?”

Fortunately, our iron-willed film director, Andy Abrahams Wilson, turned the NIH handler away, and what followed was an amazingly candid interview about Lyme disease—its dangers and its controversies.”

Soon after the camera was turned off and the crew began packing up their gear, Dr. Burgdorfer told the film team with a sly smile, “I didn’t tell you everything.”

Willy Burgdorfer, Ph.D., M.D., and Scientist Emeritus at the National Institutes of Health (NIH), lives in Hamilton, Montana.

Dr. Burgdorfer is the discoverer and namesake of the spirochete (a type of bacterium) that causes Lyme disease, called Borrelia burgdorferi, and has received numerous awards, including the Robert Koch Gold Medal, the IDSA Bristol Award, the Schaudinn-Hoffman Plaque, and the Walter Reed Medal.

He is a coeditor of the book, “Aspects of Lyme Borreliosis,” and has published over 220 research papers.

The intensely oppositional theories about Lyme disease and the proper treatment of Lyme disease is widely spread and frequently debated between Medical Societies, University Medical Centers,  medical practices, politicians and scientists around the world.  However, it is less often that these groups argue amongst themselves publicly.

Last week sent a wave of delight (for Lyme groups) and shock (from the conventional medical establishment) when the Association of American Physicians and Surgeons, Inc. spoke out against the IDSA Guidelines in a press release: http://www.aapsonline.org/testimony/lyme-disease-guidelines-comments.php.

I have just become aware of another schism that is occurring just miles from Columbia University’s Lyme and Tick Borne Disease Research Center, located in northern Manhattan NYC at Yale University’s Medical Center in New Haven, CT where the IDSA guidelines have held sway since their inception.  I had the privilege of seeing Dr. Amiram Katz,  assistant clinical professor of neurology at Yale, believes that denying the possibility of persistent infection is counterproductive and ultimately harmful.

“In the textbook of pathology, which every medical student reads, it is written that there is chronic Lyme.… We know from syphilis [a spirochetal infection similar to Lyme disease] that this type of bacteria, the spirochete, can be alive and persistent, though at times dormant,” he says. Katz asserts that refusing to accept the evidence for chronic infection is “an example of how people are going to an extreme and damaging both themselves and the patients.”

On May 2, 2009, Dr. Andrew Wilner reported online (complete story on the Doctor’s Guide Peer View) about a study conducted by Dr. Katz and presented in Seattle Washington at the American Academy of Neurology (AAN) 61st annual meeting.

Dr. Katz has been treating patients with persistent neurological symptoms with infusions of immunoglobulin (in appropriate medical cases) and finding remarkable success.

Dr. Wilner reported that all patients were treated with immunoglobulin for at least 6 months, and that after the treatment 100% of his patients showed improvement.

“The diagnosis of chronic Lyme disease is not widely accepted, yet these patients have symptoms and nerve biopsies that respond to IVIG treatment, legitimising their complaints,” concluded Dr. Katz.

I don’t know if I will be given this immunoglobulin treatment or not, but I am excited to be under the care of a logical thinking scientist and medical doctor who look at the evidence instead of listening to the predjudice of their colleagues “belief system.”

As more and more medical doctors push their way out of the box to help their desperate and suffering patients to find that longer courses of antibiotics acyually improves symptoms – the faster mainstream medicine will be forced to re-evaluate their position.  Of course we all hope that the re-writing of the IDSA guidelines will be influenced by doctors who are successfully treating Lyme disease and NOT theorotizing academicians  or doctors with no experience at all!

Additional hope comes from the political sector. Last Thursday afternoon (April 30, 2009), in Hartford, Connecticut, the House of Representatives unanimously voted, just as the Health Committee had, on a bill that takes what will hopefully be viewed as a nationally recognized stand in the heated debate over the existence of chronic Lyme disease.

“It comes down on the side of people who suffer from Lyme in this big debate,” Rep. William Tong, D-Stamford, a bill co-sponsor, said according to Greenwich Times following the vote. “It says the scientific community can have that debate but we’re not going to let anybody else go without treatment.”

Brian Lockhart, staff writer for Greenwich Times further wrote:

“Although the state Department of Public Health does not expressly forbid long-term antibiotic treatment for Lyme, the national Infectious Diseases Society has dismissed chronic Lyme as a myth.

Those who believe in chronic Lyme argue this makes state physicians fearful of being reported to the health department if they choose to recognize and treat chronic Lyme.

“There is a ‘chill effect’” on doctors, Rep. Jason Bartlett, D-Bethel, said.

Rep. Kimberly Fawcett, D-Fairfield, who helped spearhead the bill, told her colleagues prior to Thursday’s vote:  “We recognize this controversy in diagnosing this disease. But let’s give our doctors the freedom and autonomy.”

Rep. Scribner, R-Brookfield, a member of the legislature’s Public Health Committee, agreed.

“We’ve witnessed many people who have suffered long term,” he said. “I strongly urge all the chamber to consider this measure which I think is a very responsible measure.” The Connecticut Medical Society supported the bill. The Society is not taking a stand on chronic Lyme disease but believes physicians should have the right to treat patients as they see fit.

The legislation would require a chronic Lyme diagnosis be made based on medical history and a physical. It only allows long-term antibiotics for chronic Lyme disease and the language does not preclude the state from investigating physicians for wrongly prescribing medicines.

Thankfully this bill appears to be on a fast track to become law in the very state where Dr. Katz is branching out into new medical territory with immunoglobulin infusions.  By taking the fear of litigation from the medical board away, pioneering medical doctors with intuitive genius (not only like Dr. Katz but the Lyme pediatrician Dr. Jones,  Psychiatrist Brian Fallon and Pathologist Dr. Alan B. MacDonald to name just a few) to continue their brave exploration into the frightening territory of chronic neurological Lyme disease.

Nattokinase, another “biofilm buster” is being used more frequently by Lyme doctors for the very difficult cases which don’t appear to improve with any other treatments – conventional or non-conventional.

Unlike lumbrokinase which has been used for less than fifty years, nattokinase has been used for at least 1000 years in Japan.  It is a potent enzyme extracted from a traditional Japanese food called ‘natto” which is a fermented cheese-like food  that has been popular as a folk remedy partly due to its taste, but more so for its ability to correct heart and vascular diseases.  It is produced by fermenting soybeans and adding “Bacillus natto” (shown at beginning of post.)

The resulting enzyme is produced when the bacteria interacts with the fermenting soybeans.

The following quote is taken from Allergy Research Group’s Newsletter (read here) in an interview with Dr.Stephen Hines:

“Lyme Disease is my specialty. I am a Lyme patient myself and I use myself as a test subject for any therapy I use on my patients. When you have a chronic infection that gives rise to Fibromyalgia and Chronic Fatigue Syndrome, you will deposit excess fibrin in your tissues, and that will trigger a secondary immune response. Your body deposits fibrin (defined below) so that organisms are inhibited from being very mobile.

“That is both good and bad. They’re not mobile, so they can’t do as much damage, but you also can’t get antibiotics or other medications to them as easily.

“Ultimately, in order to treat the infection, we want to get deep into the tissues and this is where nattokinase has a powerful role. I start my patients on nattokinase and build them up slowly, and once they have reached a peak level and the pathogens are exposed and vulnerable, I add in the antibacterial, antifungal, or antiviral medications.”

Nattokinase, like lumbrokinase is a powerful anti-coagulant with some amazing medicinal properties.

“Lyme Fog” like Alzheimers is partially caused by the slow build-up of “amyloid deposits.”

NOTE: Nattokinase was first developed into a marketable product in the US by Stephen Levine, PhD who is the founder of Allergy Research Groups.  To sign up for their newsletter about other groundbreaking medicine click here.

According to a recent article by Vitamin Research Products, another cutting edge lab,  Amyloid deposits are particles of oxidized protein that build up inside all non-dividing, or post mitotic cells, such as the brain, heart and other key cells. Amyloid buildup slowly shuts down the ability of the cell to function properly and acts as an irritant, increasing free radical generation. (read full article here)

Evidently, brain cells are especially vulnerable to amyloid buildup during disease processes. Amyloid proteins occur in much greater abundance in Alzheimer’s disease and maturity onset diabetes than in the normal aging cells.

Over the past 40 years, only a few compounds have been reported to dissolve amyloid protein. However in January of this year (2009), researchers have discovered that nattokinase could cleave amyloid and enhance amyloid clearance. The researchers discovered that nattokinase, but not trypsin or plasmin, has the ability to degrade amyloid.

So, nattokinase is showing clear evidence of clearing the brain of biofilms AND amyloid proteins.

Additionally, nattokinase is believed to help cure chronic Lyme disease due to its ability to destroy any infection residing in blood platelets as well as dissolving biofilms. This could be one of the reasons for its current success with the stubborn chronic cases where a variety of co-infections turn the blood into “infectious soup” – as the enzymes seem to clear up a multitude of symptoms very quickly.

“Patients are reporting that they have more energy, less pain and a clearing of mental confusion in the first few days of using nattokinase!” Patricia Kane, PhD tells of her experience using nattokinase with chronic diseases.

This special enzyme also stabilizes blood pressure shown in various studies, and due to the fortifying role of nattokinase as an anti-coagulant, veins and arteries retain better flexibility which plays an important role in preventing and/or treating high blood pressure and hypertension.

Dr. Chris D. Meletis concludes in his article for Vitamin Research Products:

“Hypercoagulation is linked to heart disease, strokes, hypertension, pulmonary embolism, venous insufficiency, inflammatory bowel disease, fibromyalgia, chronic fatigue syndrome, diabetes and migraines. Nattokinase has impressive blood clot dissolving or thrombolytic activity matched by no other enzyme. Consequently, nattokinase is an ideal natural approach to stop excessive coagulation, improve heart health, and reduce factors involved in a host of disorders.”

Look for more information on a third miracle enzyme “serratiopeptidase”, the final article in this three part series.

NOTE:  This is a powerful anti-coagulant so it must be used with care.  If cut while taking this product, contact your physician immediately.

Best place to purchase:  Vitamin Research Products makes a product that is combined with the third enzyme in this series: “serrapeptase” in the correct dosages and with enteric coating to be effective.  Don’t be fooled by bargain basement prices…you will be wasting your money and will not derive any benefit.

Click here for recommended product.

It is so difficult to read articles about Lyme disease – especially chronic Lyme or neurological Lyme when it is written by someone who has never experienced it.  This medical journalist, and senior editor at Discover magazine Pamela Weintraub has experienced Lyme disease herself, and also her husband and children!  Read her story here.

You will also be interested in reading her Part Two on Neuro-Lyme.  Read Part Two here. For those of you who are suffering with neurological Lyme disease, you must know that no two “presentations” are exactly alike, and even if you have mild symptoms today, that doesn’t mean that a stressful situation next month could throw you into a full-blown case of disabling brain disease.

Evidently, initial results coming fron neurological specialists on Lyme disease like Dr. Brian Fallon is that the damage caused in the brain by neuro-Lyme can improve with treatment but it can also cause permanent damage.

Check out Neuro-Lyme.com for more information on research projects underway.

If you have had Lyme for more than a few months it is very likely that you do.  There is a gaping hole in scientific reporting about the dangers, symptoms and treatment for neurological Lyme which is why it is so refreshing to see the year end with a hard-hitting honest report on neurological Lyme disease.

Part I of “Neurological Lyme Disease Can Be The Shadowland of the Mind” published yesterday by Psychology Today and written by Pamela Weintraub covers some history, some real-life stories and a very helpful update on research regarding the crazy things it can do to our bodies, and the diseases it can mimic.

One item Ms. Weintraub mentions that we must be very vigilant about.  She writes:

The German neurologist Rudolph Ackermann found that the sickest of these neuroborreliosis patients suffered an inflammation of the brain and spinal cord called encephalomyelitis, also seen in syphilis.

When the condition involved the spine it resembled multiple sclerosis and when it involved the brain, particularly the cerebral cortex, it could produce psychoses or seizures.

The condition was progressive and degenerative without treatment, but even after antibiotic therapy, most of the patients retained the symptoms, though to a lesser degree.”

How often do we meet people who have been told they have MS but the way they describe their symptoms you just KNOW in your gut it is Lyme?  But how do we lovingly tell someone that it could be a much more henious disease, also with no cure.

Why aren’t the doctors testing for this?

Read all of Part One here.

We shall all look forward to Part Two…

Thank-you Ms. Weintraub!

On those bad days… the ones where you feel so alone and so empty…it is so important to reach out to the greater Lyme community through blogs or forums. It really help to have friends (even if they are new friend) who truly understand what you are going through.

So, don’t be shy. Take the chance, you will be surprised and rewarded how people will embrace you – and we need that community to keep our sanity as mainstream doctors continue to insist that our illness is all in our heads!

I have always hoped that if some very prominent celebrities were diagnosed with Lyme, that more media attention could help our cause and perhaps even gather some critical attention from the Capitol with long-needed legislation for assistance and relief from medical costs, insurance, costs and treatment availability!

Well, my last post showed the most recent discussion on the House floor over Lyme (make sure you watch it here), which is very exciting. Yet another exciting fact is that there have been more prominent people who have been diagnosed and treated with Lyme disease, such as:

* George W. Bush, President of the US
* US Senator Schumer of NY
* Richard Gere, actor
* Christy Turlington, model
* Amy Tan, author (“The Joy Luck Club”)
* Meg Cabot, author (“The Princess Diaries” series)
* Pete Seeger, folk singer and activist
* Daryl Hall, musician, Hall & Oates
* Rob Kress, former WXYZ weathercaster
* Jamie-Lynn Sigler, actress
* Pamela Weintraub, medical journalist
* Alice Walker, author (“The Color Purple”)
* Rebecca Wells, author (“Ya-Ya” novels)
* Tom Seaver, former New York Mets pitcher
* George Pataki, New York governor

The effect of these notables having a brush with the horror of Lyme disease will certainly build awareness in a way that no blog can do!

Another hopeful sign according to the new website for “Under Our Skin” (http://www.underourskin.com/index.html), two weeks ago, Dr. Mehmet Oz, a regular guest on Oprah and highly regarded voice in the medical community, interviewed Andy Abrahams Wilson and Washington, DC ABC-7′s Medical Reporter Kathy Fowler on his XM radio show “Dr. Oz, Oprah & Friends.”

They talked for 45 minutes about the film and the controversy surrounding Lyme disease. The radio show will air in the coming weeks. In the meantime, Dr. Oz and Oprah want to hear from people with Lyme disease. Go to the website for further information on how to submit your story.

Exciting research is being conducted under Dr. Mario Philipp at Tulane National Primate Research Center using rhesus monkeys which are very similar to humans biologically. The objective is to better understand how the spirochetes infect the brain, how they damage the brain and how they can be destroyed.

According to interviews with Pamela Weintraub (see Unknown Cure – Inside the Lyme Epidemic), Dr. Philipp has made great progress on proving his theory that Lyme infection inflames the brain (as it does joints), begins killing brain cells and persists in spite of treatment.

One of the most daunting hurdles in studying neuroborreliosis, is that even when disease is fully expected and diagnosed through current methodology, the actual spirochetes are very hard to find. The monkeys are allowing researchers to make controlled experiments and verify results definitively.

One surprise result has come from the observation of the immune system in relationship to the disease. There has been great debate on whether the chronic nature of Lyme disease comes from the actual infection or an over-reaction of the immune system where the body actually attacks itself.

Dr. Philipp reported, “There is no need to imagine an autoimmune engine for this disease. The spirochete is the direct cause. When people remain sick, the cause is either the spirochete or the remnants of its lipoproteins never fully cleared.”

Another amazing discovery made by Dr. Philipp is the nature of the infection within the body. He has found definitive proof of genetic differences between the spirochetes in each area of infection (heart, brain, skin…) as well as different genetic code for spirochetes in immune-suppressed primates versus those with a healthy immune system.

This is great news for those of us suffering as it brings medical science one step closer to finding a cure.