Why is Lyme Disease Not JUST a Tick-Borne Disease Any More?

If you have been diagnosed with fibromyalia, chronic fatigue syndrome, Parkinson's disease, ALS, MS or have gone undiagnosed with a chronic affliction, please read this article. 

Dr. Dietrich Klinghardt, MD, PhD is well known for his successful treatment of neurological illness and chronic pain with Integrative Medicine.  http://articles.mercola.com/sites/articles/archive/2011/08/27/dr-dietrich-klinghardt-on-lyme-disease.aspx?e_cid=20110820_DNL_artTest_B1

Here, he shares his latest insights into Lyme disease, including its causes, confounding factors that can make proper diagnosis elusive, and how to get around them, along with his own treatment protocol.

By Dr. Mercola

Some experts feel that almost everyone has been exposed to Lyme disease and may have it in one way, shape or form.  Whether that's true or not is up for debate, but clearly there are those who have it and are severely disabled by it.  Dr. Klinghardt—who is one of my earliest mentors in natural health and always on the leading edge—has actually suffered with Lyme disease himself, and as a result, he's passionate about finding effective natural treatments for Lyme.

The Ongoing Discovery of Lyme Disease

It's now been fairly well-established that chronic infection is an underlying factor in most chronic illnesses. Diseases such as Parkinson, multiple sclerosis and chronic fatigue are all turning out to be expressions of chronic infections.

"Right at the center of that is the ongoing discovery of Lyme disease," Dr. Klinghardt says.

Lyme disease has recently received a new definition. It now refers to illnesses transferred by insects, as opposed to simply a tick-borne disease. Mosquitoes can carry Lyme disease and many other serious infections, as can spiders, fleas and mites.

"Today I take a very different approach to Lyme disease," Dr. Klinghardt says. "I look at it as nature mingling with our genes. They are trying to incorporate their genome into our genome… Most of the time it goes wrong but sometimes it goes well. This is like the point I want to make upfront; that I take this more evolutionary view of it.

… We know that Lyme spirochetes were around for a long time but something happened maybe 30-40 years ago, where the creatures became more aggressive, more penetrating, and more illness-producing than they were before. Some of us suspect it's a man-made element. Some of us suspect that the global warming may play a role in it.

I personally suspect that the exposure to electromagnetic fields in the home and the microwaves from cell phone radiation are driving the virulence of many of the microbes that are naturally in us, and makes them aggressive and illness producing. There is probably evidence for all sides of the discussion."

Why Lyme Disease is So Tough to Diagnose…

Lyme disease is notoriously difficult to diagnose using conventional tests. And there's great variation in the presentation of the disease as well, depending on where you contracted it, and whether or not you have any other coexisting infections. There is a group of seven or eight microbes that are the most common. The worst ones are Babesia microti and the different forms of Bartonella.

"Underneath that, there's often an infection with Mycoplasma. We still don't know if it's really transferred with the same bite or if the people had it all along and become symptomatic when the immune system is suppressed by the spirochetes," Dr. Klinghardt says.

Other than the co-infections, there is what I call the "opportunistic infections." The combined effect of the initial infection is an immune suppressive effect, and then the patient becomes vulnerable to all sorts of other things. The most common things people contract early on in the course if the illness are different forms of parasites, such as protozoa; Babesia itself being one of them.

There is Giardia, amoebas, Trichomonas, malaria, and different forms of infections that aren't labeled yet. There is a new one, called FL1953. Stephen Frye discovered that. It's a protozoan organism that's causing severe fatigue and illness in chronically ill people. It's almost always present in a patient with Lyme disease.

And then we find a lot of worms in people. They may be microscopic and they may be macroscopic. That means they may be visible in the stool or they may not be visible."

Common Presentations of Lyme Disease

The most simple presentation is the orthopedic forms of Lyme disease as they're typically more superficial, affecting the larger joints. Interestingly, Dr. Klinghardt injects ozone into the joint in these cases, which he claims is:

"100 percent effective if the Lyme disease or… whatever the microbe is, lives in the joint and is confined to the joint space. Simply putting ozone in the joint will kill the spirochetes, and often with one, sometimes two treatments, make the joint completely pain free. That's one form of the expression of Lyme."

When the microbes and the associated immune reactions are situated in the connective tissue, the infection presents as a "vague, dispersed pain," which oftentimes ends up being labeled as fibromyalgia by conventional doctors. The immunological expression of Lyme covers a wide variety of immune system disorders, typically with some aspect of autoimmunity.

"I did my thesis in 1976 on autoimmune diseases and how the autonomic nervous system interacts with the immune system," Dr. Klinghardt says. "We found then that the determining factor of the outcome of an autoimmune disease was the presence of microbes that were catastrophically unresponsive to antibiotics.

Any autoimmune disease, including rheumatoid arthritis, we suspect has an underlying level of Lyme disease that needs to be treated appropriately before the patient has a chance to recover from the illness."

The gastroenterological presentation, where you have constant stomach problems, constipation, recurring stomach ulcers and/or indigestion, is very common, especially with the Babesia infection. This is sometimes the direct outcome of pancreatitis or hepatitis, but it can also be due to parasites acquired after contracting Lyme disease. In these cases, aggressive treatment of the parasites typically resolves the problem.

"The most startling form of the expression of Lyme disease is a wide variety of neurological illnesses," Dr. Klinghardt says.
"That is what we specialize in… We see a lot of cases with multiple sclerosis (MS)… ALS… [and] everything in between: the chronic fatigued patients, the patient with vague, undistinguishable neurological symptoms, the feeling of buzzing in the head, buzzing on the skin, crawling under the skin…"

How to Diagnose Lyme Disease

Insomnia is one of the key symptoms in many cases of Lyme disease, along with neurological symptoms such as headaches and a wide variety of pain syndromes. But you cannot diagnose Lyme disease on symptoms alone, because they're so varied.
Testing is required, but even that is not a sure-shot…

Most commercial tests designed to detect chronic infections are based on measuring your immune reaction—the presence of antibodies—to the invading microbe. However, one of the primary cells that get infected with Lyme spirochetes are the white blood cells themselves, which is a bit of a game-changer… because if your white blood cells are infected, they lose the ability to produce antibodies.

Hence it is relatively common to get a negative test result…
Dr. Klinghardt refers to this as "the Lyme paradox," because in order to diagnose Lyme disease properly with one of the accepted commercial tests, you have to first treat the Lyme disease, in order for your white blood cells to be able to mount an appropriate immune response. Only then can a lab test be used to detect the presence of Lyme disease.

"An exception to that are the test based on direct microscopy, where you're not depending on the immune responses for the patient," he explains.

However, this too has its drawbacks and difficulties. For example, the FISH test for Babesia is done on blood. But Babesia lives in the central nervous system, joints, and connective tissue. It doesn't live in your blood stream, at least not in significant amounts, so it can easily be missed when looking at blood.

To get around the many testing conundrums surrounding Lyme, whenever he suspects Lyme, Dr. Klinghardt treats his patients for Lyme disease for at least six to eight weeks, followed by a Western blot test, which measures immune response. The treatment is initially based on the clinical symptoms presented, along with a form of muscle testing he developed, called autonomic response testing (ART), which incorporates both classical neurological testing and kinesiology.

"It's not related to the applied kinesiology system that's quite distinct," Dr. Klinghardt explains. "It... may look similar… [but] we're looking for very specific reflexes that are connected to very specific illnesses. We arrive at a tentative diagnosis through history taking, through looking at skin signs; palpating the tissues; testing the normal neurological reflexes; orthopedic tests, and then we add the muscle testing as an additional tool."

Tests and Lab Recommendations

Dr. Klinghardt exclusively uses the IGeneX Lab in Palo Alto for his blood tests, and Fry Labs in Arizona for direct microscopy testing.

"I don't have a financial investment in it, but it's the gold standard in our field," he says. "They use two different antigens. The commercial labs and hospitals and so forth, they use one antigen and are notorious in under-diagnosing Lyme disease. We recommend to rather not test it than get a false negative, which will sometimes lead the patient 20 years on the wrong track. With the other co-infections, the detection rate drops way down.
… We do the FISH test [for Borrelia] at IGeneX Lab. It's a direct microscopy test which has more false negatives than the western blot.

… The leading test for Bartonella that we use is Fry Labs in Arizona. Steven Fry, who does a wonderful direct microscopy test, often comes back positive with the diagnosis of hemobartonella. Hemo means simply blood – Bartonella in the blood. Remember, he's testing the blood where the Bartonella typically does not live. It lives in the nervous system. So if you find it in the blood in small amounts it generally is an indicator that there is a high amount in other tissues in the body."

An indirect test is the CD57 test. "CD-57" is a specific group of natural killer cells that are particularly damaged by the Lyme spirochetes. Therefore, if your numbers drop to a certain level, it is an indirect indicator that you may have Lyme disease, because the only known infection to suppress CD57 is that of Borrelia burgdorferi.
Normally, your CD57 value should be over 100. If it's lower than that, you're infected with Borrelia. If it's below 60, you probably have both Borrelia and Mycoplasma, and, most likely, some other co-infections.

Dr. Klinghardt's Treatment Approach

Dr. Klinghardt takes microwave radiation and electromagnetic fields very seriously, as it can have a profound impact on Lyme disease.

"One of my primary treatments for Lyme disease is to put people in protective clothing that shields them from incoming microwaves," he says. "We shield the bedside. We turn off the wireless internet at home. We put shielding paint on the houses. That has been a more successful strategy to treating Lyme disease and to get people neurologically well than any of the antibiotics or any of the antimicrobial compounds."

He's convinced that the increased virulence we're now seeing is related to the dramatic increase in electromagnetic fields and microwave radiation from cell phones, cell towers, and all manner of wireless technologies. Therefore, EMF and microwave radiation mitigation are part of the standard protocol, as any subsequent treatment of Lyme disease will not be as effective unless these external factors are addressed.
Below is a summarized outline of Dr. Klinghardt's treatment for Lyme disease. For more information and details, please listen to the interview in its entirety, or read through the transcript.

1. First, external factors that act upon the body 24/7 are evaluated.
   This includes electrosmog, EMF, microwave radiation from wireless technologies, and molds. To test for the presence of mold, he uses the ERMI score, which is a semi-quantitative assessment of how much molds is in your home. The score should not exceed 2. However, most of his patients score between 15 and 20. For more information on mold, Dr. Klinghardt recommends www.SurvivingMold.com.
2. Once external influencing factors have been determined, they're remediated and mitigated. (For mold remediation, please refer to this previous article.)
   
   To mitigate microwave radiation, Dr. Klinghardt recommends shielding your home with a graphite paint called Y Shield outside, and use special silver-coated cloth for your curtains. These measures will compromise your ability to receive cell phone calls, so depending on your situation, you may opt to shield just your bedroom, or shield your entire home and just use a landline.
   
   All cordless telephones are removed, and patients are instructed to turn off all the fuses at night, until they have recovered from Lyme disease.
3. Next, the emotional component of the disease is addressed using Energy Psychology tools, including psychokinesiology (PK) which is similar to the Emotional Freedom Technique (EFT), but more refined and advanced..
4. Dr. Klinghardt begins the treatment for Lyme disease by addressing parasites, followed by "the Klinghardt antimicrobial cocktail," which addresses the Lyme spirochetes, Babesia, and Bartonella. For more details and complete recipes to all his treatment cocktails, see www.KlinghardtAcademy.com or send an email to info@KlinghardtAcademy.com. Some of the ingredients in his formula include: wormwood (artemisinin)—which has been found to be extremely effective for malaria—combined with phospholipids; vitamin C, and specific herbs.
   
   Lastly, viruses are addressed using a tincture of Native American herbs called Viressence, by BioPure.
5. Additional lifestyle factors are also addressed, including diet and vitamin supplementation.

A Word on Antibiotics

Conventional Lyme treatment hinges on long-term use of antibiotics. While this treatment can indeed be effective, there are many reasons to opt for alternatives such as those detailed by Dr. Klinghardt, as antibiotics will disrupt your gut flora, thereby exposing you to a whole host of other pathologies.

More Information

In Dr. Klinghardt's experience, the International Lyme and Associated Disease Society (ILADS) is by far the best and most responsible group, so to learn more about Lyme disease, see www.ILADS.org.

"Depending on where you live in the U.S., consider the treatment that is offered to you through a Lyme literate physician. Most of them have been through the training at ILADS and I do recommend that," Dr. Klinghardt says.

"But there is a level beyond that, which I'm hoping I'm introducing here. If you just do antibiotics, okay, you just do antibiotics. But if you think more holistically and do the things that I recommend, then you no longer will need to resort to antibiotics because you cover your system on so many other fronts. And with that you're not only treating Lyme disease but you're preventing cancer, diabetes, Alzheimer's disease—you're preventing pretty much all the other things that we didn't know were associated with Lyme.
So by treating the mold, by getting electrosmog under control, by treating the infections, by treating insulin resistance, we are preparing the patient for much happy and healthier longer life, and more productive life, which is of course what I'm hoping for…"

Again, Dr. Klinghardt provides free access to all his recipes on his web site, so to learn more about his treatment, please see www.KlinghardtAcademy.com.

Update on Journey with Lyme Disease & Magnetic Therapies

By Janis Uquillas, R.N.

It has been a month since I lost wrote and I am very happy to report that I have slept soundly every night since I started sleeping on magnets in early September.   When I first received my super bed grid and Vitality Enchancer on September 16th, I went full speed ahead and was drinking magnetized water, using the super bed grid and enchancer and some localized magnets.  I experienced constant nausea and a funny taste in my mouth so I thought maybe my body is trying to adjust to all of the heavy duty magnetics and I will have to go more slowly.  So some nights I would sleep in my bed for half the night and then move to another bed without magnets. 

After about 4 days, I felt off balance.  That scared me as I had previously had attacks of vertigo off and on since the 1970's and the last attack in February landed me in the hospital and bedridden for 3 weeks.  So I decided to remove the Vitality Enchancer and stop the magnetized water and just try sleeping on the super bed grid for awhile to let my body adjust.  The nausea and dizziness stopped completely and I felt great.  Now I feel that I have more than adjusted to the super bed grid and some localized magnets so adding back the Vitality Enchancer and the magnetized water so that I can do the full magnetic protocol for Lyme disease.

I am beyond thrilled with more than 6 weeks of nightly sound sleep.  Restful sleep makes a world of difference.  I feel that my overall health is gradually improving.  Occasionally I have pains that indicate either a die-off reaction or just the normal ups and downs of Lyme but generally the quality of life is better each day. 

My husband reports a much deeper sound sleep as well.  I just finished making magnetic dog beds for both of my dogs yesterday.  Last night they sleep there for the first time.  My little pom slept on her back and she never does that and she slept soundly and didn't wake me up early like she usually does.  My other dog leaped out of bed with great energy this morning and usually she is dragging. 

Will keep you posted on my progress.  Blessings.

Journey with Chronic Illness

By Janis Uquillas, R.N.
9/12/11

The last time I remember sleeping well without a natural or medicinal sleep aid is when I was a teenager.  Now, I am 59+ years old.  I have lived with Chronic Lyme disease, fibromyalgia, chronic fatigue syndrome, multiple disc herniations, chronic nerve pain and arthritis to name a few for many years.  I think that I got infected with Lyme disease as a teenager and have been sick since.  The Lyme wasn't diagnosed until approximately 3-4 years ago.  I believe that the Lyme disease is the root cause of many of my symptoms.  Treating chronic long term Lyme disease is not only extremely expensive but difficult to put it mildly.  I long go lost optimistism for beating this illness and settled into a quiet reserve of life with pain, fatigue and many other issues.  JES Organics has been such a blessing for me, I can't imagine life without my mission.  At times, I wondered given the poor quality of life, how I could manage to live into old age not sleeping and living with pain all the time. 

Sleep had always been a big problem for me along with a host of many other symptoms.  I try to be as alternative as possible in any treatment approaches as I believe that medicines while they sometimes have their places in our lives and in our health, generally cause more problems and should be avoided as much as possible.  If there is a natural approach, try that first in my opinion.   

Approximately 3 months ago, my holistic doctor recommended North Pole magnetic therapy for me as treatment for my Lyme disease.  Initially, I took this information lightly because after all, I have been an alternative medical researcher for years and I hadn't heard much on this topic before.  Then he asked me to read a book on the subject which I slowly got around to doing.   The book certainly peaked my interest enough to want to learn more on the subject, to be honest, it sounded too good to be true!  So I went to the library and checked out every single book available on magnetic therapy and also did a lot of research on the Internet reading as many articles as I could find.  Every single book and article I have read has indicated that north pole magnetic therapy is beneficial for so many symptoms and illnesses.  I also learned that the reason it may not be widely known is because clinical trials are extremely costly to conduct and often require private funds unless it is a drug backed by a big pharmaceutical company.  Let's face it, do you really think that 'Big Pharma' wants to do clinical trials on magnets that would eliminate the need for many drugs. 

So after months of researching and trying to find out the correct protocols for me, I am excited to say that my magnetics are on the way here, due to arrive this week.  I feel like I have been waiting forever for them to arrive.  In the meantime, 3 weeks ago, I ordered 2 magnetic pads.  Today I can report that I haven't taken any sleep aids for almost 2 weeks now and sleeping very well.  The north pole negative polarity magnets stimulate the pineal gland and melatonin production.  I never liked taking the melatonin supplement because the sleep wasn't great and it gave me nightmares but I have no problem with natural production of the melantonin.  This is just the tip of the iceberg for me.

In the books and articles that I have read, I am very optimistic that the magnetic protocols will change my life.  This is highly unusual for me, a natural skeptic and someone that has tried many things.  My doctor did warn me and this was confirmed in all of my reading that not all magnetics are created equally.  It is crucial to get the right type, right size, correct protocol and good quality.   

As my journey continues, I will be excited to share my progress with you.  It is possible that I will experience some detox reactions during treatment and that is to be expected, I don't fear that like I did with taking medications in the past for Lyme as I don't also have to worry about the damage that the treatment is doing to my body because the magnets will not harm me. 

If you have any questions, please feel free to e-mail Janis at jes@jescollection.com.

Breaking Lyme Disease Research News: New Hope for Lyme Disease Patients

A new research study shows that healthy individuals, certain Lyme disease patients with persistent neurologic symptoms, and chronic fatigue syndrome patients possess different proteins in their cerebrospinal fluid. This finding provides evidence that chronic fatigue syndrome and neurologic Lyme disease are distinct disease entities.

Greenwich, CT (PRWEB) March 3, 2011

Through "protein profiling" of spinal fluid, a new research study shows that healthy individuals, certain Lyme disease patients with persistent neurologic symptoms, and chronic fatigue syndrome patients possess different proteins in their cerebrospinal fluid. This finding provides evidence that chronic fatigue syndrome and neurologic Lyme disease are distinct disease entities.

“The potential for spinal fluid biomarker detection to aid or actually establish diagnosis of Lyme disease is within our grasp,” according to Dr. Harriet Kotsoris, Medical Director for Time for Lyme, a Connecticut based non-profit organization that has been funding research for Lyme and tick-borne diseases since 2002 and has raised nearly $5 million to date.

The research was led by Dr. Steven E. Schutzer of the University of Medicine and Dentistry of New Jersey-New Jersey Medical School, and Dr. Thomas Angel, Dr. Tao Liu, and Dr. Richard D. Smith of the Pacific Northwest National Laboratory. The study, “Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome” is published in the February 23rd issue of PLoS ONE. Time for Lyme provided funds for the study along with the National Institutes of Health among other organizations.

Dr. Kotsoris also notes that this study exemplifies the key role collaboration plays in research funding among a wide variety of public and private institutions.

Click here for more information on the published study results: http://www.timeforlyme.org/PDF/article_journal_pone_2_2011.pdf

Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease

Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease

by Bonnie Gorman RN

Dr Sam Donta presented a comprehensive, compassionate, cutting-edge lecture to Mass. CFIDS/FM Association members on November 3rd, 2002. His topic was "The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues." Dr. Donta is a nationally recognized expert on Lyme disease. He is the Director of the Lyme Disease Unit at Boston Medical Center and a Professor of Medicine at BU Medical School. He is a bacteriologist and an infectious disease specialist, who views CFS and FM from that vantage point. He is also a consultant to the National Institutes of Health (NIH), and presented at NIH's scientific meetings on CFS research.

What does Lyme disease have to do with CFS and FM you might be asking? Some people believe that Lyme disease may be one of the causative factors in both CFS and FM. Others believe that some CFS and FM patients are really misdiagnosed chronic Lyme disease patients and vice versa. Some believe that there is no such thing as chronic Lyme disease, instead these patients actually have CFS or FM. We asked Dr. Donta to help sort all this out.

Parallel Symptom Patterns

Dr. Donta presented the symptom lists for chronic Lyme disease, chronic fatigue syndrome (CFS), fibromyalgia (FM), and Gulf War Illness (GWI). He pointed out the similarities between them, and found there were few differences. He has treated hundreds of patients with these illnesses. He found that CFS and GWI have identical symptoms, and FM is only distinguished by a positive tender point exam, that is often positive in CFS and GWI as well. Clinically it is almost impossible to distinguish or differentiate these illnesses.

He has concluded that chronic Lyme disease is remarkably similar to CFS, FM, and GWI. These multi-symptom disorders have similar symptom patterns consisting of fatigue and neurocognitive dysfunction, along with numerous other symptoms that probably relate to altered neurological function. Musculoskeletal symptoms may be more frequent in FM and in some patients with chronic Lyme than in CFS, but the definition of CFS and GWI also includes muscle aches (myalgias) and joint aches (arthralgias).

Lyme Disease Symptoms

Flu-like illness, fever, malaise, fatigue, headache, muscle aches (myalgia), and joint aches (arthralgia), intermittent swelling and pain of one or a few joints, "bull's-eye" rash, early neurologic manifestations include cognitive disorders, sleep disturbance, pain, paresthesias (including numbness, tingling, crawling and itching sensations), as well as cognitive difficulties and mood changes.

The only symptom difference in Lyme disease is the expanding circular rash with a clearing area and center resembling a "bull's eye." He pointed out that Lyme has multiple types of rashes and half of the rashes are not typical, they may not even include the "bull's eye" rash. They can appear from two day after the bite, then go on for a week or so. Patients who are infected may not develop or see the rash, and may not develop any future symptoms. In studies, only one third of the patients were actually aware of their tick bites.

30-50% of acute Lyme disease patients went on to develop chronic Lyme disease. Additionally, some previously asymptomatic patients may reactivate their infection following various stressors such as trauma, surgery, pregnancy, coexisting illness, antibiotics treatment, or severe psychological stress. The Lyme vaccine can also reactivate their infection. Similar triggers such as trauma, surgery etc. are known to precipitate CFS, FM and GWI as well. This is not a new phenomenon with infectious diseases. We know infectious diseases (i.e. TB) will reactivate after illnesses or surgery-- any stressor.

Dr. Donta reported on the effects of gender on host susceptibility in Lyme disease, CFS, FM and other multi-symptom diseases. In all these disorders, women appear to be more affected than men, usually at about 2:1 ratios. He noted that neural cells contain estrogen and progesterone receptors, and that herpes viruses can utilize estrogen receptors to gain access to the reservoir in the cell nucleus. Treatment of chronic Lyme disease also seems to be gender-dependent to some degree, with men generally having more speedy and complete recoveries compared to women. He concluded that gender relationships are known for a number of infectious diseases, so it would not be surprising that such a relationship exists for chronic Lyme disease, CFS, FM and other multi-symptom disorders.

Etiology

Lyme Disease: A distinct difference between Lyme disease, CFS and FM is that the origin of Lyme is clear. Lyme disease is caused by spirochetal bacteria transmitted by the bite of an infected deer tick. This bacteria is the Borrelia burgdorferi bacteria. It was identified in the late 1900s in Europe. The US was late to recognize what Europe had described. Lyme disease was not formally identified by the CDC until 1977 when arthritis was observed in a cluster of children in and around Lyme, CT. Since that time Lyme disease has been identified in many states. The CDC reports that it causes more than 16,000 infections per year in the US. Some researchers feel that the prevalence is higher than that.

CFS and FM: Dr. Donta feels that Lyme disease is an important cause of CFS and FM. In addition to Lyme, there are a number of other possible causes. The evidence is still circumstantial though. Epstein-Barr virus (EBV), the major cause of infectious mononucleosis, continues to be debated as a cause of CFS. It is uncertain whether EBV can cause symptoms other than fatigue, such as myalgias and arthralgias that are not seen during acute or reactivated EBV infection in patients who are being immunosuppressed, but it remains possible that EBV could cause one type of chronic fatigue disorder. There are also other herpes viruses i.e. HHV6 that are being evaluated as potential culprits.

Dr. Donta reported that recently recognized species of Mycoplasma (Mycoplasma fermentans, Mycoplasma genitalium) have been implicated in CFS, FM and GWI. These same bacteria have also been implicated as causative agents of rheumatoid arthritis, based on PCR-DNA evidence in patients with these disorders in which 50 percent are found to have the DNA of the Mycoplasma in circulating white blood cells, compared to 5-10 percent of a normal population. Whether the presence of this DNA represents past exposure or ongoing infection remains to be resolved. No long-term studies have yet been performed in patients with CFS and FM to determine whether the finding of Mycoplasma DNA persists over months or years or whether such patients have any evidence of other infection such as Lyme disease or infection with Chlamydia species.

Central Nervous System Involvement

Dr. Donta reported that in Lyme disease, the nervous system seems to be the primary target for the bacteria causing the disease. Patients with Lyme disease express many neurologic symptoms such as pain, paresthesias including numbness, tingling, crawling and itching sensations, as well as cognitive difficulties and mood changes. Even the joint pains and occasional arthritis appear to be neuropathic in origin, as anti-inflammatory agents such as ibuprofen and other nonsteroidal anti-inflammatory drugs (NSAID) have little if any effect on the pain. Experimental evidence from animal models also affirm the localization of B. burgdorferi DNA to the nervous system. Dr. Donta postulates that the disease mechanisms could involve inflammatory responses, autoimmune responses or toxin-associated disruption of neural function. Any inflammatory responses appear to be weak, and there is no compelling evidence that Lyme disease is a result of immunopathologic mechanisms.

Commenting on his research, Dr. Donta speculated that if they are correct, and lyme bacteria is a nerve toxin that interferes with the transmission of the nerve impulse, then that is all you need to impede the normal flow of information. There is a lot of cross-talk in the nervous system. This toxin will decrease that cross-talk causing delayed responses resulting in cognitive problems-- the brain fog so commonly described in all these multi-symptom disorders.

Although the disease pathways for other possible causes of CFS and FM have not been defined, Dr. Donta postulates that the central nervous system would appear to be a logical target for other pathogens or other disease processes. These illnesses clearly affect the brain and are bound to cause many neurological manifestations. Any changes in immunologic function would not appear to be sufficient to explain the various symptoms, and are likely to be secondary to other disease processes.

He feels we have been thinking too simplistically about finding whole organisms replicating in chronic diseases. It is highly likely that there is no single cause for these illnesses. It's more likely that there are multiple causes-- different organisms causing the same final set of symptoms. Researchers need a better algorithm to study these fatiguing illnesses. We need to be more inclusive, rather than trying to separate the illnesses. Sometimes in medicine, if an illness is too complex to study, research interest dwindles. We have the technology to do the research, but there hasn't been the will and the momentum to get it done.

Clinical Diagnosis

Dr. Donta reiterated that the diagnosis of Lyme disease is primarily based on clinical grounds, just as with CFS and FM. Once other disorders are ruled out, the combination of symptoms over months is sufficient to make a presumptive clinical diagnosis. The diagnosis of Lyme is made easier if a typical rash is present during the early phase of infection. After that, it is difficult to distinguish the flu-like illness that can occur a few weeks later, or can recur over a number of months.

Dr. Donta reported that some patients develop severe headaches and an aseptic (infection free) meningitis, which frequently is diagnosed instead as viral meningitis. If a Bell's palsy occurs (drooping of one side of the face), the possibility of Lyme disease is likely. If an unprovoked arthritis occurs, causing swelling of a single joint, especially the knee, but sometimes more than one joint, then the possibility of Lyme disease should also be given high consideration.

He emphasized that it is the chronic phase of the disease that causes most problems for physicians and patients, because of the lack of objective signs and the presence of so many symptoms that it causes some doctors to attribute psychological reasons for the patients' symptoms. Many patients then receive a diagnosis of CFS or FM, when they may have underlying chronic Lyme disease as the cause of their symptoms.

Diagnostic Tests

Tests for Lyme disease, like tests for other infectious diseases, are often confusing and circumstantial, and their analysis and interpretation has often been flawed. In infectious diseases you do a Western blot test to see if you have a specific reaction. Western blot separates out proteins antigens of an organism you are looking for. It tells you if a person has been exposed. It is not a direct measurement of the organism. It is a measurement of whether the person has antibodies to it. Antibody tests are useful in the early stages of illness as with other acute infectious illnesses. Once the illness is in a chronic phase, antibody tests are not useful.

Just as viruses change from year to year, we know the Lyme bacteria mutates. There are a number of organisms that can shift their surface protein in a matter of hours and that is how they evade detection and patients test negative. These organisms attach themselves to proteins and conceal themselves-- creating a cloaking mechanism that defies detection. This allows them to get where they want to go-- the nervous system. Once they are inside a cell, the immune system can't see them.

That said, Dr. Donta explained that lab tests have been helpful is some patients with Lyme disease, especially those with arthritis, in whom there are stronger antibody responses than in those with the chronic, multi-symptom form of Lyme. The criteria for the laboratory diagnosis has been patterned after the arthritic form of the disease, and not the chronic form; as a result, there are many physicians who are misinformed about the test's lack of value in chronic Lyme disease. The Lyme Western Blot is helpful when it shows reactions against specific proteins of B. burgdorferi, but can be negative in 25-30 percent of patients who otherwise have chronic Lyme disease.

PCR-DNA tests for Lyme in blood, urine and spinal fluid are rarely positive, most likely because the bacteria and their DNA are not present in those body fluids, but inside nerve cells. Additionally, PCR-DNA studies are very easy to contaminate.

In chronic Lyme disease, the MRI exam of the brain is positive in about 10-20 % of patients. It can show some white spots (unidentified bright objects- UBO) in various areas, similar to those seen in multiple sclerosis (MS), a neurologic disease of unknown cause that has some overlapping symptoms with Lyme disease, CFS and FM, such as the numbness and tingling or paresthesias. (There are also positive MRI findings in CFS and FM patients as well.)

Dr. Donta reported that the brain SPECT scan shows some changes in blood flow to various parts of the brain, primarily the temporal (cognitive processing) and frontal (mood) lobes in about 75 percent of patients with chronic Lyme disease. Patients with CFS have also been reported to have some brain SPECT scan changes, frequently involving the occipital lobe. No comparative studies have been made among patients with chronic Lyme disease, CFS and FM. The mechanisms underlying these changes remain to be defined, but may be due to a mild vasculitis (inflammation of blood vessels) or to a signaling problem within the nerve network of the brain in those specific areas. It is promising that these changes are reversible in most patients treated with antibiotics that appear to be effective in treating the chronic Lyme disease. These MRI changes are often slow and may take a year to reverse themselves.

These are covert organisms we are dealing with. We need more direct detection methods for blood, spinal fluid and other body fluids. How do you detect organisms in spinal nerve roots or brain? Right now we can't. Nobody is going to biopsy patients. We need an illness registry so we can do direct detection studies, particularly of the brain, after death.

Treatment: Persistence Pays Off

Dr. Donta reported that there are lots of drugs that are active against the Lyme bacteria in the test tube, but the big question is whether the drug can get to the bacteria? Lyme bacteria lives in the cells of the nervous system, perhaps other cells. Dr. Donta has experimented with various intracellular-type antibiotics. He reviewed his journey through various antibiotics. After listening to his patients he decided that some antibiotics were better than others. He then looked at clarithromycin (Biaxin) and azithromycin (Zithromax) which he found had powerful activity against Lyme bacteria in a test tube.

But the antibiotics, by themselves, did not seem to do any good. He found that you need to change the cellular pH (the degree of acidity or alkalinity), making it more or less acidic, to maximize the effectiveness of the antibiotic. This allows the antibiotic to work better i.e. doxycycline seemed to work better when the pH was higher. Dr. Donta has experimented with various agents to adjust pH i.e. amantadine (used to treat flu) and plaquenil (used to treat malaria). He just submitted proposals to NIH to study various agents to determine which is most effective.

Dr. Donta emphasized that the most important aspect of treatment is that it must be long-term-- 12-18 months, sometimes 24-36 months. This length is not unusual in the treatment of infectious diseases i.e. TB. In the first few months of treatment patients can expect an adverse reaction, symptoms will increase and you'll feel worse. You need to be able to hang in through this period, and allow 3-6 months of a treatment trial to determine if it is working. The earlier in the disease process that you start on treatment, the more successful it is. The more chronic the condition the less successful it is, and you'll need to treat over a longer period of time. This treatment resulted in substantial improvement and cures in 80-90% of patients with chronic Lyme disease. There are 10-20% who do not respond-- generally those with a strongly positive Lyme test.

Dr. Donta reported that similar results have been found in some patients with CFS and FM of unknown cause, supporting the hypothesis that some patients with CFS and FM have an underlying infection responsive to those antibiotics. Antibiotic trials in CFS and FM have been limited to one month, a duration that is inadequate to properly evaluate the potential of certain antibiotics to have a positive effect on the disease. Additional studies, examining both potential etiologic agents of CFS and FM as well as treatment trials should lead to a better understanding of both the cause and treatment of patients with CFS and FM.

Questions & Answers (Q&A)

Q: If the Lyme lab tests are inadequate and the symptoms are the same as CFS and FM, why not just treat all CFS and FM patients with the Lyme protocol?

A: You want to be conservative with your medicines. I think we have enough info now to tell CFS and FM patients to consider going on a 3-6 month trial of antibiotics and see if you're better. Consider all the other meds you are already taking that just treat symptoms and not the cause of your illness. They all have side-effects that can be hazardous. Is it worth it to you to consider a primary treatment aimed at a cause? There will be resistance from some MDs. They need to be educated. Your primary MD will need to consult an LD specialist re the treatment protocol.

Q: Do patients with Lyme disease also have bowel and bladder problems like interstitial cystitis (IS) and irritable bowel syndrome (IBS)? How are they affected by treatment?

A: Yes, many patients with Lyme have IS and IBS. He was surprised how much the bowel disorders affected treatment. Tetracycline generally helps the IBS. Plaquenil can sometimes irritate the bowel.

Q: I have received different results for the western blot Lyme test. Why?

A: Lyme test results are not reproducible from one lab to the next. You will get different findings from different labs. The western blot is not a great test for Lyme since the responses to Lyme bacteria are already very small responses.

Q: I've been sick for 15 years with CFS and my Lyme test was negative. Is there any value in treating now?

A: If the test was negative but you have the complex of symptoms and there is no other obvious answer, why not give antibiotics a try.

Q: I had the Lyme vaccine then got Lyme symptoms. Why?

A: Lyme vaccine was pulled from the market because it was causing reactions and reactivating a slow onset of Lyme disease.

Q: What are the ocular problems in Lyme?

A: He sees optic neuritis, similar to that seen in atypical MS patients.

Q: Is there any Lyme connection to cutaneous lymphoma?

A: He has looked closely for any cancer/ Lyme associations, but has not seen many.

Q: Is there a connection with thyroid problems?

A: Thyroid problems are a very common co-existing condition with Lyme, as they are with CFS.

Q: How do I differentiate itching from allergic reactions?

A: The same sensory nerve fiber pathways that carry pain carry itching, numbness, tingling etc. Rash is common symptom. Rashes could be caused by medications, especially if they are body-wide. Is it an allergic reaction or hypersensitivity reaction? Get a complete blood count (CBC) with differential. Eosinophils will be elevated if allergic reaction. If not, then it's a hypersensitivity reaction. Treatments are similar.

Q: How do we get funding for research to advance these illnesses?

A: He stressed how important it is to combine advocacy and research efforts. Ultimately it will be a political solution. Get active legislatively in DC. The CFS Coordinating Committee is a very good forum. Lyme does not have anything like that. Groups need to work together, not fight with each other. There should be a coalition of all these groups. We also need to show insurance companies the benefits of primary treatment to patients, as well as to insurer's bottom line.