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Nancy’s Plea

Doctors who have reservations about diagnosing Lyme disease or refuse to use Long-Term Antibiotic Treatment

Don’t dump everything in a generalized category like Multiple Sclerosis.

Differentiate

Understand that you are misdiagnosing if your diagnosis is determined by a negative result from a Western Blot.

Patients have Rights to be informed of all available treatment protocols and the right to choose which ones they want to use.

Symptoms brought your patient to your office. There is a long list of possible symptoms manifested by Lyme disease. If obvious diagnosis is not made, begin asking questions about exposure to ticks and tick larvae.

Nancy 1990

Diagnose in the office and begin treatment if the patient has been exposed to tick inhabited areas and demonstrates at least one of the symptoms of Lyme. Test, and retest and retest again with more varieties and sensitivity of tests. Work with a Laboratory that specializes in tick vector diseases. Positive results will confirm your clinical diagnosis. Negative test results do not rule out Lyme. Continue treatment and test again until you are certain that there is no connection with Lyme disease.

Misdiagnosed with Multiple Sclerosis my wife, Nancy Andison, suffered through years of continuous decline. Nancy can’t move her arms, legs, fingers or toes. She is fed through a tube and urinates through a tube. Her voice is almost undetectable. She has the right to choose a viable alternative treatment. If it is not allowed, she feels that she also has the right to ask for her loved ones to help her painlessly and peacefully slip these coils with dignity.

Written with respect for those who have been blinded by the status quo in the medical and insurance fields…

By Steve Andison, for Nancy Andison

aredandi@ak.net

Current Address:
9346 Parkview Court
Juneau, AK 99801
March 21, 2006

Dear Physicians,

We understand that you all will do what you consider best for the patient (modified by what may be controversial or unapproved by insurance). There is no single treatment protocol for addressing Lyme and its associated diseases. Different degrees and stages of the diseases may require a wide range of trial modalities before you find one or two that help. Not all patients will respond to one universal treatment. Please remain open to varying lengths, types, and potencies of treatment. Those who are researching new antibiotics, we hope that you will do trials on Lyme spirochetes and Babesia protozoa.

If you have uncertainties or consider long term use of antibiotics to be experimental, then you should catch up with current findings. Prolonged antibiotic treatment has been considered both appropriate and necessary for people who have contracted Lyme disease and have not responded to 30 day antibiotic treatments.

Nancy and I are biologists and after many years of dealing with Nancy’s Primary Chronic Progressive Multiple Sclerosis, we have become fairly knowledgeable regarding the immune system and the typical treatments for MS. The treatments did nothing to ease her suffering.. Therefore on July 1, 2004 I quit my job and dedicated myself to finding alternate views about autoimmune and demyelinating diseases, and new treatment protocols that provided some hope for her continued struggle. I have spent the last two years searching alternative diagnoses and treatments. As Nancy’s condition declined, I began questioning “our” ( “our” as in the medical community, conventional reasoning, accepted protocols) as well “my” personal unquestioning acceptance of mainstream MS diagnosis and treatment.

I knew that once I began finding alternative logic about her condition, I would find other more knowledgeable and credible researchers who have further developed new theories. I don’t ascribe 100% accuracy or efficacy to any of the studies or dogma of polarized groups, but with their help, I am finding answers that we desperately need for Nancy.

No treatment has affected the course (chronic decline) of Nancy’s condition. Indeed, at this point the only medications Nancy is taking are to control symptoms of her disease. Nothing is administered to target a causal agent of the disease. Nancy’s disease has been resistant or unresponsive to methotrexate, interferons, steroid, anti-inflammatory and all that conventional medicine has to offer.

I went back to some of the baseline information that we understand about MS, and added the correlation of Nancy’s work with mice, in tall grasses, with deer, with elk in the Northwest, prime endemic area for Ixodes pacificus, the western US black legged deer tick. I found that there are some new MS drugs being developed; but none of them are available to our useful for Primary Progressive MS. Partially by necessity (if it was MS it was incurable) and by logic (she fit all of the risk factors and symptoms of advanced Borrelia burgdorferi and Babesia microti) I returned to testing Nancy further for Lyme, even though Nancy had tested negative for Lyme Disease on two occasions. The similarity between Lyme disease and Multiple Sclerosis symptoms haunted me. The tick bites confirmed, the endemic areas we hiked, and because she was totally unresponsive to MS treatments, I was certain that Lyme disease was a better fit.

I researched the types of testing that Nancy had received for Lyme disease, and the current sensitivity of our best tests today. I selected a laboratory that had a high rate of positive results for Lyme disease . Those inordinately high positive results would either be due to higher sensitivity and accuracy, higher error rate, or different positive diagnoses thresholds (an article on this lab follows) I determined that Federal agencies, hospitals and researchers were using a laboratory that I had selected, IGenX Laboratory. Recently the lab had been recertified and identified as one of the best state of the art facilities in the US. We had blood drawn here in Alaska, processed and evaluated for Lyme disease at IGenX, in detail (13 tests).

Nancy tested positive for Lyme, and for Babesia as well. She had tested negative by standard tests in 1989 as well as our repeated attempt in 2005. However, on the face of them, the original tests included disclaimers regarding the rate of accuracy with these tests are best at 2 weeks post exposure, but are degrading after 4 weeks and are not dependable at all a year after exposure. In addition, IGenX sets their sensitivity levels to detect even trace amounts of antibodies, RNA, DNA, and immunoglobulin levels. They reason that it is better to have a few false positives that cause people to be treated with a short term antibiotic than it is to produce a negative that may cause a person to suffer, wither, and die over many years. In truth, however, their track record (as I understand it) is less than 100% accurate and misses 2% to 3% of tests that should have been positive. Therefore they produce more positive results with their approved tests, but they are one of the worlds most sophisticated and accurate labs for these specialized tests.

As I immersed myself in research I found that science had made giant strides since the definition of this disease in Lyme, Connecticut in 1975. The internet provided me with a great deal more medical library tools than it did in 1989. Unfortunately I also discovered that diagnostic guidelines and treatment protocols were distinctly polarized! The two camps have split so far apart that there are few standing in the center. Unfortunately these extremist positions have produced, for the most part, two undesirable outcomes. The one side will continue to over-diagnose and over-treat for Lyme disease; the opposite side of the debate consistently under-diagnoses Lyme disease and it goes untreated with dire and eventually fatal results..

The really disheartening aspect of this polarization produces several negative outcomes; the side that underestimates the number, severity, and complexity of Lyme disease cases misdiagnose and therefore ignorantly (sometimes stubbornly) condemn the patient to years of chronic suffering, pain, cognitive impairment, and neurological degradation. By stringent black and white dichotomous approaches and sticking to a blind protocol of 30 day antibiotic treatment, they are allowing reoccurrence of resistant bacteria.

The proponents of prolonged antibiotic treatment are largely rooted in real experience, which in scientific terms is anecdotal if not within a test. Cases and individual results recorded therapy and results determined physicians in the field (the real domain of endemic disease). There are a solid core of competent PhDs and MDs that have used these emerging patterns to develop a very different view and treatment protocol. The preponderance of evidence from successful and semi-successful positive outcomes of prolonged, pulsed, and combination of antibiotic treatment is very persuasive. It is persuasive to the extent that those professionals who refuse to take extended antibiotic treatment seriously should test their antithesis with the partnership of their opponents. However, the vast majority of funding is being invested in the short term treatment and under-diagnosis studies that confidently tout significant conclusions. Because they have a great deal of influence and funding to structure more elaborate tests and produce conclusions by their own definition.

The zealots that over-diagnose Lyme and over-prescribe antibiotics are harming their own cause. Those zealots that under-diagnose and under-prescribe are likewise discrediting themselves. In my opinion there are just two factors that have created this fissure between the two sides. Firstly a definitive and reliable test does not yet exist to make an accurate diagnosis based upon the test results alone. Diagnosing these diseases still requires more clinical logic than science. Patient history, pattern of behavior, location, vocation, and exposure must be accurately assessed to determine the risk factor of the patient exhibiting typical, unexplained, or advanced presentations of disease. That clinical judgment must weight the evidence. Yes, the doctor makes a rational judgment call.

Those patients in high risk groups with early or advanced facial palsy, neurologic disorders, or cognitive symptoms should be treated for Lyme even lacking confirmation by laboratory results. Confidence is heightened by positive test results and treatment may then become more aggressive. But testing is not yet definitive or superior to clinical diagnosis.

The second factor contributing to the divide, is the lack of a potent and targeted antibiotic compound that will eradicate the diseases even where capillary blood flow is inadequate to allow enough contact time or potency to destroy the causal pathogens. Therefore the selection of antibiotics, dosage, duration, alternating and pulse timing of the antibiotic tools we do have is again more logic and instinct than it is precise science.

The techniques employed with known antibiotics are effective to varying degrees today. Long-term pulsed antibiotics and the art of introducing synergistic antibiotic combinations is a legitimate and important treatment option. However, for the practice to become extremely effective we are going to need a new super antibiotic compound. The procedures and protocols may be correct, but our arsenal is too weak. I am inclined to endorse (by my own logic and instinct) the long term pulsed antibiotic, the best ones that we have for this use. When we have stronger or precisely targeted antibiotics perhaps the chronic persistent form of the disease may be completely eradicated in a shorter period of time. We already have a promising new antibiotic that shows promise as an antiviral that destroys HIV, while at the same time showing promise to be deadly (even in micro-dilution) to B. burgdorferi cells, and perhaps to the Babesia organism as well. Known simply as CSA-54*1 at this time, it will hopefully be patented, put on the fast track, and studied in human trials very soon.

For now, however, persistent Lyme infection tends to return after the patient has been asymptomatic. Apparently Borrelia burgdorferi leaves reserve cells hidden in areas of low capillary influence, or in the form of cysts that are impervious to antibiotics. Babesia microti cloak themselves by invading red blood cells of the host. There they are protected by the self-presenting antigens on the exterior of the red blood cell. If we are to have any chance of eradicating, or even significantly control the level of disease, we must catch the Lyme disease in its spirochete form, and the Babesia after it has divided and is en route between red blood cells. It is therefore not surprising that the attack against these diseases will not be a swift and complete eradication. Over the course of many months a high percentage of these diseases may be destroyed while they are vulnerable. Even with pronounced improvement, however, a maintenance skirmish may be needed to attempt to pick off the stragglers so the population does not grow again.

For patients that have had the disease for many years and are in final stages, a 30 day treatment will have little measurable or observable effects. A 90 day treatment may not even provide significant results. Therefore an extended treatment with various antibiotics for several days, alternated with unmedicated days (giving the body breaks from stress, and keeping the disease in a state of transition) is indicated. As most antibiotics destroy good bacteria as well as the target bacteria , antibiotic treatment should be supplemented with beneficial gut bacteria (probiotics). After perhaps 6 months an assessment may be made to determine by some measurable basis if the patient has realized any benefits.

I understand why the experts are divided in their opinions. There are strong statements regarding the neural scarring or plaques being nonexistent or present in Lyme disease and definitively confirmed in Multiple Sclerosis. This was an early assumption, but has been disproved (see following figure).

I have explored the immune system to the molecular level, its complexity and mathematical implications of virtually infinite variations in how we can interact or direct it. I’ve studied the autoimmune dysfunctional responses in detail and the variables are overwhelming (especially for a layman like me). There are several mechanisms by which the body can attack itself. There are likely many genetic mutations (dominant genes explaining familial clusters). A new genetic discovery fits into the rationale that suggests part of the equation for contracting the disease includes a genetic propensity. A study published December of 2005 reports the location of a gene that if mutated allows immune dysfunction. It is called the TACI gene, (Tumor Necrotic Factor Family*1).

On the definitive side of our theories we may measure patients at higher risk genetically when we factor in the recently found TACI gene mutation with immune system disorders. Not every person with this genetic mutation has a disorder (having not been infected with the appropriate pathogen) but every person with immune system disorders expressing neurologically had the gene present, and at least 50% of their family members also had this genetic mutation.

TACI*2stands for Transmembrane Activatort and CAML Interactor. TACI*2 is expressed on B cells and signals through CAML. (Calcium-modulating cyclophilin ligand) transmitted via lymphocytes. The TACI*2 gene is a member of the Tumor Necrosis Factor Receptor Super Family and is therefore often referred to in medical literature as TNFRSF. This gene has loci in the DNA sequence in the second Tumor Necrosis Factor family located at site 13B. If you are interested in looking at this relatively new relationship between TACI*2 and immune dysfunction, you may want to start at John Hopkins University, Online Mendelian Inheritance in Man (OMIM) site.

Old knowledge looks for an erythema migrans and “typical” symptoms as well as serological confirmation to make a diagnosis. New findings indicate that the old view was far too simplistic. Less than 40% of Lyme disease patients ever presented an erythema migrans (target banded rash at infection site). Less than half of the patients recall a rash or flu-like symptoms. 50% of Lyme patients will initially test negative. While a high population of Borrelia and or antibodies are clearly detectable there is additional accuracy in the testing (after two weeks, before three months). Outside of this window, testing is anecdotal until a physician has repeated tests, and availed himself of the many super-sensitive tests (required to diagnose responsibly regardless of what insurance companies have to say about it).

It took quite some time and even conscious effort on my part to check my prior understanding and clinical beliefs. I had to consider what would happen if multiple conditions and infectious agents cause a dysfunctional immune response, demyelination and self destructive antibodies exhibiting virtually identical processes and results. Could they not all appear the same when separated from other clinical and patient history understanding. What if there was a single pathogen that could settle into one of several genetic immune weaknesses; could that same invasive organism result in several diseases, leading scientists to look for a new virus or bacteria when it was right there under their noses. Perhaps the differing symptoms are not the result of different pathogens, but are results a known pathogen taking advantage of different genetic weaknesses?

What if every time we saw lesion on the brain that looked like MS, we simply diagnosed it as such? What if the patient was a US Fish and Wildlife biologist working in tall grasses studying elk and habitat, or population cycles of mice as they relate to population cycles of coyotes? Would that single clinical history interview change the interpretation of the same MRI image to Lyme disease? Could the same bacterial and protozoan agents be expressed with differing emphasis presenting in several patterns causing a descriptive name (such as ALS, MS, Lupis) but had all come from the same type of invasive organism?

I believe we are too certain of ourselves at times. Like the flu, many variants will all be called the flu. Many illnesses have “flu like” symptoms. Many expressions of Lyme with or without a co-infection can be said to have “MS” like symptoms. Where flu-like symptoms present muscle aches, fever and nausea, these illnesses may be either a different strain of flu, or a different disease altogether that cause the symptoms. We have to understand that whereas there are many wildfires every year that consistently leave the same appearance and destruction, they were not all caused by lightning even though they look the same. Likewise several pathogens may cause the same kind of demyelination and immune dysfunctions that attack where the genetic weakness lies, attacking muscle, bone, cartilage, nerves, brain or any area that the immune system can attack.

Consider: Neurol Sci. 2001 Nov;22 Suppl 2:S79-83.

Differential diagnosis of posterior fossa multiple sclerosis lesions--neuroradiological aspects.

Falini A, Kesavadas C, Pontesilli S, Rovaris M, Scotti G.

Department of Neuroradiology, Scientific Institute San Raffaele Hospital, Milan, Italy.

Various infratentorial pathological conditions can mimic multiple sclerosis (MS) both clinically and radiologically. We review the inflammatory, vascular, neoplastic and metabolic conditions which show features similar to those of MS on magnetic resonance imaging (MRI). Behcet's disease, Lyme disease, progressive multifocal leukoencephalopathy, neurosarcoidosis, Whipple's disease, listeria rhombencephalitis, Bickerstaff's brainstem encephalitis, vasculitis due to systemic lupus erythematosus, and acute disseminated encephalomyelitis produce inflammatory lesions similar to those of MS in the brainstem and cerebellum. Neoplastic diseases, in particular pontine gliomas and lymphomas, can mimic MS. Vascular ischaemic lesions, either due to infarction produced by occlusion of a major posterior circulation artery or due to small vessel vasculopathy, can lead to posterior fossa lesions. The MRI changes of central pontine myelinolysis can also mimic MS. Diffuse axonal injury, radiation and chemotherapy induce lesions that resemble MS, however the clinical history will exclude these possibilities. Finally, we discuss a few conditions which are similar to MS in clinical presentation but have different MRI appearances, such as brainstem cavernomas, posterior fossa tumoural lesions, aneurysms and vascular loops producing neurovascular conflicts. Analysis of the MRI findings with clinical history and laboratory data helps to narrow down the diagnosis of the infratentorial pathology.

LYME DISEASE BRAIN SCAN http://www.columbia-lyme.org/index.html

MRI captures the physical structure of the brain, unlike PET and SPECT, which reveal the functioning of the brain.

In neurologic Lyme Disease, approximately 15-45% of patients may have white matter hyperintensities. These are sometimes also called UBOs or "unidentified bright objects". In some patients, antibiotic treatment results in a diminution or disappearance of these hyperintensities. Certain MRI sequences are best able to detect hyperintensities; these include FLAIR sequences and Magnetization Transfer methods. These MRI images in Lyme Disease may appear similar to the demyelinated areas seen in the "white matter" of the brain MRI of patients with multiple sclerosis.

MRI captures the physical structure of the brain, unlike PET and SPECT, which reveal the functioning of the brain.

In neurologic Lyme Disease, approximately 15-45% of patients may have white matter hyperintensities. These are sometimes also called UBOs or "unidentified bright objects". In some patients, antibiotic treatment results in a diminution or disappearance of these hyperintensities. Certain MRI sequences are best able to detect hyperintensities; these include FLAIR sequences and Magnetization Transfer methods. These MRI images in Lyme Disease may appear similar to the demyelinated areas seen in the "white matter" of the brain MRI of patients with multiple sclerosis.

So where do I stand and what do I consider when advising my wife on how we should approach the end stages of TERMINAL Multiple Sclerosis (although you may read in highly respected journals that Lyme disease and MS are rarely, if ever, fatal.)? As I’ve poured through the studies I have noticed trends and generalized results. I have reached tentative conclusions based on what is known today, at this moment.

There have been some highly funded and highly touted scientific studies on Lyme, MS, and the possible link between the two. There have been frequently cited studies indicating that prolonged treatment with a battery of antibiotics shows no more efficacy than those cases treated with a 30 day course of the medications. In reviewing these studies I observed that those that were adequately funded were also very well structured and designed by highly qualified, influential, mainstream professionals. There were double blind placebo controlled well framed studies that produced laudable results.

However, whereas they were highly funded and highly touted studies, they are also highly suspect by level of confidence intervals, statistical significance, and sampling errors. Within the findings and conclusions of these studies were some undefined assumptions that could have skewed the studies toward the previously held conclusions of the researchers and funding organizations. The studies make broadly stated claims that prolonged high dose antibiotic treatment posed more risks to the patients and was no more beneficial than the standard 30 day protocol.

Therefore these studies implied that the opposite (prolonged antibiotic use) clinical point of view is in error, or at very least unsubstantiated benefits could not justify the clinical risks. In reality all that they really proved was that those antibiotics delivered at that dosage in a 90 day treatment protocol was insufficient to eradicate persistent Lyme disease. They in no way have proved the ineffectiveness of the other treatment protocols. The architects of these studies, however, were using their own definitions of words, concepts, and significant finding as if they were impartially (in the true sense of science) simultaneously testing the opposite hypothesis as well as there own. When they say “long term treatments” provide no additional benefits they are defining long-term as 90 days. Most proponents of long-term antibiotic treatment say that 90 days is a good start but then kick it up to two additional groups: 90 weeks, and then 90 months. In addition, within the long-term advocates are a whole subset of antibiotic selection, synergistic combinations, doses, and spiking/withdrawing cycles of antibiotics that must be incorporated if the hypothesis were to be truly tested.

Intrinsic in several of these studies are flaws in sample size, implying greater statistical significance than confidence intervals should be generalized for accuracy in predictive application to the population. The available sampling pool, in some, and eligible test subject criteria in other, tests would select for a given outcome. In essence, we do not know what expression of disease was sampled and whether the same infirmity was representative of what we declared we are testing and or proving. When does Lyme disease become a post-treatment resistant strain of disease, post-treatment after 14 days, 30 days, 90 days, or 36 months of treatment? Treated with what antibiotic combinations and delivered on what schedule?

There are also some persuasive studies demonstrating that short term antibiotics may be useless in persistent cases and that prolonged and adjusted treatment is necessary if any improvement at all will result. These studies are highly persuasive but most do not have the scientific structure to be conclusive. They are, on the other hand, not theoretical, but are accumulations of real-life cases and outcomes from different physicians, and sifted by a data base. Excellent evidence that more funding is imperative for thorough assessment of the varying forms of this treatment protocol. The lack of test design diminishes the statistical certainty that we can attribute to these results. There are many flaws in these reports as well, but they are consistent enough to demand a well financed, thorough and well defined study. Because the observations are not confirmed or controlled by structured testing parameters resulting in properly framed numerical data that can be accurately manipulated and theories extrapolated from, they are widely dismissed as “only anecdotal” evidence.

In dealing with both MS, and Lyme disease I have had the opportunity to talk with many people who could confirm that mainstream, old school treatment protocols were ineffective except in cases of very recent exposure. They chose different protocols and were greatly improved. These observations cannot constitute scientific significance, but they do place an onus on researchers (of both extremes) to blend knowledge, reach collaborative single definitions of terms, and agree on the criteria that constitutes both the control group and the other test group parameters.

I am emphatic about the need for joint study, collaboration and funding, because I have known and talked with many that had failed with the traditional treatments, but totally reversed the course of their disease which had been, for the preceding 15 years, primary chronic progressive with no remissions and only a few plateaus. They had slurred speech and were bedridden and unable to feed themselves. They are now ambulatory clearly verbalize, and show no cognitive deficits. The doctors who have these successful experiences should combine their experience and examples of theses and varying protocols to test.

There is a great tendency for patients and doctors to overstate their confidence that what worked for one, proves that the same treatment will unequivocally cure any patient. Desperate patients have heard about a cure (of a sample patient) and make an appointment with over confident doctors. The frequency of total success, or even beneficial results may be overstated. This stigmatizes the unilateral single theory treatment by certain doctors who believe that their results may be consistently replicated. Hopeful sufferers pass the word along and people begin expecting miracles, only to be cruelly disappointed.

Overstating the probability or frequency of positive outcomes feeds the fire of controversy. The patient may have developed too high of expectations and will become disappointed and critical. The opposition will use those examples of failure. However, on the opposite trend, the stubborn physician who treats only with a 30 to 90 day protocol and then declares the patient incurable; he may be condemning a patient to great unnecessary suffering and may in turn be embarrassed when another physician takes a different tact and succeeds. The real damage is done when a patient has severe disappointment and depression when the treatment does not work. Likewise, a patient led to believe that this will absolutely work may report misleading improvements that are nothing more than placebo effects that will come and go.

I have read and could contribute to criticisms and flaws in studies on both sides of the issue. There are point and counterpoint reviews of the most influential studies and evidence for both sides of the discussion already on the internet. But it is not my intent to single out studies and stimulate controversy. I have thousands of pages of studies, testimonies, litigation, pure science without application, and far too much for me to completely understand. It would be counterproductive for me to attempt to address these issues in a comprehensive manner. I will only propose that there is more than enough evidence on several treatment protocols that severely impaired patients should have the right to make an informed consent to. Be willing to try them all in the hopes that you will find one that is effective against an individual’s own expression of immune dysfunction.

We do not have adequate evidence to be obstinate in our respective positions. However, many of us no longer have time to wait for the evidence and studies to accumulate and new treatments to evolve. We wish we could make a more informed choice, but we do not have that luxury. We must go with what we know now, and so long as it is not totally irresponsible and is the desire of the patient, it is the patient’s right to chose where to make their stand!

There is something desperately wrong if a physician is fearful and allows the legal system, insurance companies or mainstream peer pressure to determine what and how the patient can be treated. It would be staggering if we actually knew how many patients’ care and untimely death was determined by insurance companies, their actuarial tables and their overriding mandate for cost efficiency and profits. Doctors are afraid to go outside of the “typical” guidelines as approved by the aggregate of insurance company data. The long term pulsed and varying antibiotic treatment has been shown to greatly improve or cure patients with Lyme and its associated diseases, but it is forbidden until the treatment is clearly defined, limited, averaged, and proven. Then, dragging their feet, and likely only after they calculate that the onslaught of lawsuits will be more expensive than treating every chronic Lyme patient with long-term antibiotics, will they begrudgingly begin coverage and approval.

There is an intrinsic conflict of interest when insurance companies are allowed to either choose which treatment a patient is eligible for, or to override a doctor’s decisions and prescriptions. The system needs repair if the insurance companies have the ability to stigmatize or cause problems for doctors that are responsibly treating their patients to the best of their abilities. They may not be treating according to the age, dosage, or term that the insurance company approves, but the doctor has still taken an oath to judge the required tests and treatments according to the patient’s symptoms and response to treatment. The doctors should not fear the patient who does not fit the statistical average. Any insurance company, professional physician or scientist (practicing or researching) who is digging in their heels with a final dogmatic and immovable position is either full themselves or credulous.

The physician who only considers opinions of mainstream, conservative, insurance compliant doctors, will be afraid of law suits resulting from patients’ requests for alternative treatments (with proven efficacy in part of the population) if the treatment is not popularly regarded by insurance companies. If you, as a physician, treat by popularity and safety margins and refuse to treat a patient differently (if the patient is unresponsive to demographically popular theories) then you are simply not putting the patient first and your license should be revoked if you insist upon treating, unalterably, by traditional practice despite the fact that the patient is unresponsive. Doctors with weak knees and feet of clay tend to watch a patient be treated right up to the day the mortician takes over his duty, and with a clear conscious laments “Well, that is heartbreaking but we did everything we could.” Did you? Was something else indicated but not mainstream enough for you? Or did you refuse to try something because of all of the paperwork and challenges from an insurance company or your own hospital, clinic, or HMO management?

If you insist on only treating with the standard that applies to the majority, you are putting your oath in lower priority and are ignoring the patient as a singular unique living soul, the basic principals of medical practice and science. There are already records on human trials with the procedure we are now requesting. If the history of medicine had followed your current guidelines, we would still be letting blood and decreeing incurable diseases as punishments from a deity. Don’t be stone aged, please be on the cutting edge and be proactive, interested, and unbiased until there is conclusive evidence. Or spend your life and career in the “safe zone” while dozens of your patients suffer needless slow deaths, gradually diminishing them over decades. Of course, you will never be sued if you stay in the middle. But those patients who are looking to you to find a way to help them, they expect you to try alternative treatments when the statistical middle-of-the-road, insurance covered protocol is not working.

Doctors in Alaska should understand that virtually everyone in this state leaves the state to visit home, relatives, or warmer vacations with a change of scenery. There, Alaskans may contract Lyme disease and other complications. The Alaskan comes home and is diagnosed by a doctor who does not have the experience he or she needs. If the doctor is too prideful to consult with doctors that have experience and a level of success with Lyme disease treatment in endemic areas, that doctor should not be practicing any longer.

Canada! (Excuse me, I’m referring to the government not the citizens) What is your situation? I’ve noticed that the United States Center for Disease Control Lyme tracking map clearly demonstrates that American ticks refuse to enter Canada without proper documentation. As there is no application procedure for insects, as of yet, American ticks confine themselves to the northern boundaries of Washington state, and Maine. You Canadians have a good system for studying Multiple Sclerosis (perhaps even better than US studies and approaches). You need to take a good look at tick born diseases within the Canadian citizenship and report how many people have Lyme disease. Perhaps you are insulted that the disease is named after an American city. I say pick one of your cities and name your northern version as you wish (Ontario Disease?). Help us understand if there is a correlation between the Ontario disease and Multiple Sclerosis. Do your Royal Canadian Horseback Police have a higher rate of Ontario disease than do your city-bound police force? Eh? Do you have a higher incidence along your coastal regions? How far north do these ticks and diseases extend?

As this letter is being written, there is not a preponderance of evidence suggesting that only one treatment protocol and duration is efficacious. The offhand dismissal of “anecdotal” reports, studies, and observations of both doctor and patient is really quite foolish. These frequent observations accumulate and show tendencies that should be the impetus for advancements in medical science (this is the way it always has been). Conversely, people who broadly interpret the popular mainstream structured studies as dead wrong, and as intentional subterfuge, are a little too conspiracist-like to be reasonable.

In my opinion, the proponents of the above mentioned long-term antibiotic regimen have no overwhelming statistical evidence that rises to the level of proof. However, the “N” (sample size) portion of the statistical equation is much larger and persuasive in this school of thinking (albeit less structured) and the impressions of these doctors are likely to, but yet to be, proven. I am swayed more by the frequency, consistency, and sample sizes of the doctors practicing in the Lyme endemic trenches than I am by the more exactingly designed studies. These better designed but smaller scoped studies extrapolate to the thinnest of margins conclusions that hardly render a final verdict above that which could be defined as opinion. They certainly have not proven their case either. I believe, however, that they are on the correct path if they combine their case results and clinical experience with the research indices already established by a greater body of clinical cases.

I want all of the MS cases and Lyme cases compared and altered according to risk, and response to treatment. I want all of the US, European and Canadian data accumulated and categorized. I want all of this data to be standardized and organized so that hundreds of thousands of anecdotal experiences with diagnosis and treatment can be included in the data base. I want the results of treatment efficacy to stand up to a Chi-squared test and adjusted with Yates correction factors to determine our degrees of confidence and freedom. I want to know a hierarchy of effective treatments to attempt. Unfortunately what I want remains a distant hope, while we must make decisions today. I don’t want my decisions limited by someone’s pride, ego, or financial gain. I don’t want my doctors to buckle to pressure. Nancy and I want the right to choose a treatment other than the treatments that have failed. It is the right of the patient.

There is more than enough evidence to establish the link between Borrelia burgdorferi, Babesia microti, and the symptoms that Nancy Andison has exhibited. Further, it is a known fact that Nancy Andison had in previous years been in Lyme endemic areas and that she had been bitten by ticks while studying elk, deer, mice (carriers of the infected tick) and their habitats; exposing her to the known vector of Lyme bacterial infection and its associated co-infections. According to accepted medical protocol it is prudent to assume that she has Lyme disease and we should therefore aggressively treat with antibiotics lethal to these organisms for as long as it takes to attain achievable benefits. I don’t give a damn that the insurance company insists that 30 days of treatment will eradicate the diseases she contracted 24 years ago. Does anyone really believe that insurance companies put patients’ well being above their profit margins? Whereas these treatments should have been started long ago on clinical evidence alone, now that we have positive test results to confirm the diagnosis we should be treating Nancy with a long-term antibiotic treatment rather than with drugs to control her symptoms. We also realize that it is reasonable to assume that an Alaska doctor would not be entirely aware of diagnostic tests and protocols in 1986 that we are aware of today. Even the neurologists in the best research hospitals started with the assumption that they were dealing with MS.

There is proof that various antibiotics are lethal to the bacteria and micro-organisms that tests have shown to exist in her body. We know that additional antibiotics with increased efficacy are currently being developed and tested, we want Nancy to be around to take advantage of the upcoming antibiotics. We understand the risks associated with prolonged treatment, they have been long established. But with that knowledge, we are also aware of the controls that exist to balance the risks of Clostridium difficile and that Nancy has previously overcome this complication with antibiotic treatment. We also understand the appropriate prophylaxis for these conditions with the use of concentrated pro-biotics.

We also understand the risk of “line infection” associated with long term intravenous treatments. Furthermore, we understand the nature of associated staphylococcus infections (and that there are strains that are resistant to readily available antibiotics).

Nancy had been previously diagnosed with Multiple Sclerosis. We will agree with that diagnosis, however, it is important that it be modified to indicate her disease as untreated chronic persistent Lyme disease, and Babesia infections presenting with Multiple Sclerosis-like symptoms. Because the symptoms of Multiple Sclerosis and these Lyme associated diseases are identical they are easily mistaken for each other. Nancy was diagnosed with MS because an ELISA and Western IgG blot test were returned negative. At the time we were all unaware that these tests were not to be used as the primary diagnostic tool when coupled with Nancy’s background.

However, when the above diseases are likely (circumstantially in Nancy Andison’s case) and certainly when these diseases are known to be presently persisting in Nancy Andison’s body (as established by certified laboratory testing) the precise disease description is Lyme disease with associated B. microti co-infection. The primary diagnosis should be amended and dated in all of her existing medical charts explaining that Nancy Andison has Lyme disease that was undetected and was treated as multiple sclerosis which is an accurate description of unchecked Borrelia burgdorferi and Babesia microti which are not responsive to standard MS treatments. Treatment has been limited, thus far, to addressing ancillary symptoms. The definitive diagnosis was not made until 2005. From this point forward treatment will include a prolonged antibiotic regimen specifically targeting the diseases that compromised her immune system. We are establishing a current symptom baseline in 2006, Nancy’s conditions, scaring of nerve tissue that causes neurological failure, axonal damage, and neuronal and muscular atrophy will be identified and quantified to the extent possible. Treatment will now begin for eradicating Lyme and Babesia disease. Changes in condition will be noted as they occur.

I encourage our physicians that there is precedence demonstrating that if you are testing for things indicated by likelihood (wildlife biologist with ticks on her) or by symptoms (she has all of them) there is no unreasonable testing or costs. If you document your reasoning, remain current with charting the patient’s response to treatment, your rationale, results, and reasonable adjustment to the results you are getting, then you are safe. If you ignore the rights of the patient when they have made a reasonable choice of treatment, you are not safe. Further, we insist that our doctors treat to the best of their ability and within reasonable conformance to the patient’s expressed choice of treatment protocol. We will not tolerate treatment only as diagnosed and prescribed by insurance companies.

Physicians are being sued for treating with expensive and uncovered antibiotics that are of little or no effect. There are physicians being sued for treating for MS when Lyme was clearly indicated and in the case of chronic long-term Lyme a long-term treatment is also indicated; especially if requested by an informed patient. When physicians document their rationale and patient’s comments, the long-term antibiotics that are indicated by clinical diagnosis, and that the patient was warned that insurance may refuse to pay for such treatment there has never been a legal penalty or medical board censure let alone removal of license. In no case within these parameters has a patient or group action ever been upheld. In every case the plaintiff did not prevail. There is coming a day, however, when doctors or insurance companies that refuse this alternative treatment will be negatively sanctioned and held accountable.

We are a well informed family. We know about antibiotics, associated risks, Clostridium defficile, balancing with probiotics and the Herxheimer’s response. We hold harmless the doctors that help us achieve our goals. We accept full responsibility for our chosen treatment protocols. Nancy is dying. She was not properly diagnosed by the obvious clinical evidence and further reasonable testing for various indicators of Lyme repeatedly over a period of time. She was misdiagnosed. However, there was no negligence or reasonable expectation that a doctor in a region innocuous for Lyme would know more than our family physician knew and was advised by the laboratory that served the family practice.

The bottom line consistent with current knowledge; Nancy has been presented with four choices. 1. She can continue a failed treatment protocol that her body has been unresponsive to, that does not address a disease, and is only medicating for symptoms while she declines neurologically and is in greater levels of discomfort and reduced abilities to communicate. 2. Nancy can engage in an aggressive antibiotic treatment per guidelines that are well established. 3. Nancy can pursue her desire to avoid further decline and loss of dignity by asking her family for assistance in ending her suffering via compassionate family assisted suicide. 4. Nancy can be allowed to make an informed decision between two courses; one treatment that has only a 5% chance of improving her condition, or the other treatment that has proven to have zero percent chance of improving her fate. Which one would you choose? Which one will you allow?

Gentlemen, Doctors, you must re-evaluate your ethical position in relationship to your oath. It is with absolute certainty that I tell you her condition is terminal, in the not too distant future. It is also with absolute certainty that I tell you she has been unresponsive to typical MS treatments. I am also stating that there are alternative safe and proven methods of treating her disease, although it is not without risk, it is the only reasonable alternative. Those of you who fear our litigious society had better focus on your oath to do no harm as it will prove more prudent than the “be not sued” oath. Such a safe and ineffective stance will eventually be interpreted as incompetence when presented with Nancy’s type of clinical symptoms and personal history.

You know for certain that what you are doing now is not working for Nancy. You know that her condition will be terminal. You know that your treatments have been employed for sufficient time so as to prove them ineffective for her neurological demyelinating disease. You also know there is another option that her specific diagnosis may very well respond to. You, however, have denied this patient her right to try to save her own life by electing her own choice of viable and legitimate treatments. You have denied patient rights. You are, in fact, choosing to do her harm in an attempt to protect yourself financially as a higher priority than her wellbeing . Having read this, you can no longer consider yourself “harmless” in the course of her treatment.

If you afford yourself current education from all sides of this issue, you may actually become emboldened and confident to recommend and prescribe treatments (that insurance companies have not previously approved) simply because it is in the best interest of the patient. Be part of pushing insurance companies to comply with new beneficial treatments, not proponents for status quo above patient benefits. If other treatments are not working and another protocol may work, it is your obligation to inform the patient. To cause Nancy to adhere to a treatment that has PROVEN to be ineffective, and refusing a legitimate alternative therapy that she has requested, you are intentionally doing her harm.

Don’t allow insurance companies to leverage your diagnosis and treatment. Don’t allow politically mainstream American Medical Association held views limit your reasonable choices. This is her life, she has the right to try to save it in this other treatment protocol, and there are many physicians that are familiar with it, can keep her safe, and can consult with you. If you abdicate your responsibility to fully inform and treat, to the best of your knowledge and well known medical advancements, you are on legally thin ice.

Nancy and I are choosing our course of treatment. We are consulting with Lyme and Lyme associated disease specialists. We do not expect our decisions to be ignored, doctors less informed about Lyme and associated diseases may consult with doctors who are in endemic Lyme regions, both those who treat according to the dictates of the insurance companies and those who are experienced with treating invasive and evasive micro-organisms with long-term antibiotic protocols.

Will you allow us our choice of treatments; or will you insist upon unsuccessfully treating her into her grave to protect your own behinds? What will you allow?

Please let us choose how we make our last stand. Respect Nancy’s wishes.

*1 The Salt Lake Tribune

By Bob Mims

The Salt Lake TribuneResearchers, including a BYU scientist, believe they have found a new compound that could finally kill the HIV/AIDS virus, not just slow it down as current treatments do.

And, unlike the expensive, drug cocktails 25 years of research have produced for those with the deadly virus, the compound invented by Paul D. Savage of Brigham Young University appears to hunt down and kill HIV. Although so far limited to early test tube studies, CSA-54, one of a family of compounds called Ceragenins (or CSAs), mimics the disease-fighting characteristics of anti-microbial and anti-viral agents produced naturally by a healthy human immune system.

Under a study sponsored by Ceragenix Pharmaceuticals, Savage and his colleagues developed and synthesized the compound for Vanderbilt University's School of Medicine. In his Nashville, Tenn., laboratories, Derya Unutmaz, an associate professor of Microbiology and Immunology, tested several CSAs for their ability to kill HIV.

While issuing a cautious caveat about his early results, Unutmaz acknowledged Monday that CSAs could be the breakthrough HIV/AIDS researchers have sought for so long.

"We received these agents [from BYU] in early October and our initial results began to culminate by November 2005. We have since reproduced all our results many times," he said. "We have some preliminary but very exciting results [but] we would like to formally show this before making any claims that would cause unwanted hype."

What studies to date show is a compound that attacks HIV at its molecular membrane level, disrupting the virus from interacting with their primary targets, the "T-helper" class white blood cells that comprise and direct the human immune system. Further, CSAs appear to be deadly to all known strains of HIV.

That would be a welcome development for the estimated 40.3 million people now living with HIV/AIDS globally, including nearly 5 million newly infected in the past year alone.

"We have devoted considerable resources to understand the mechanism of these compounds. We think this knowledge will enable us in collaboration with Dr. Savage to design even better compounds," Unutmaz said.

In addition to being a potential checkmate to HIV, the compounds show indications of being just as effective against other diseases plaguing humankind - among them influenza, possibly even the dread bird flu, along with smallpox and herpes. Savage said he and his BYU research team had been studying CSAs for eight years, noting the compounds' value against microbial and bacteria infections. It was only a year ago they saw that CSAs killed viruses, too.

"They kill viruses very effectively and in a way paralleling our own, natural defenses," Savage said, noting that beyond the obvious use as a weapon against the AIDS pandemic, CSAs could help many others with non-HIV immune deficiencies. Further, the compounds appear to have few limits on how they are delivered to patients. Although early indications are for application of CSAs with an ointment or cream, pills or injections may also be developed - if the compound gets to market. BYU and Vanderbilt have jointly filed a patent on CSA technology, which has been licensed exclusively to Ceragenix.

Ceragenix CEO and Chairman Steven Porter said only further research will tell, but he was optimistic about the application of CSAs in the war on HIV/AIDS. There are indications that it could help battle antibiotic- and antiviral-resistance strains of disease as they manifest themselves.

"We are encouraged . . . that CSAs may provide a completely unique family of anti-infectives, potentially active against a wide range of viral, fungal and bacterial targets, including those resistant to current therapies," he said.

Assuming continued positive test results in animal and eventual human trials, Porter estimates it could be three to seven years before the compound is available by prescription. That transition could be accelerated, however, if the Food and Drug Administration should decide to fast-track the drug.

That day is still a long way off, though. First, researchers plan to publish their results in scientific journals, seeking peer review and independent confirmation of their findings. Assuming no flaws are found, several rounds of testing would follow. Most of the nation's leading AIDS experts were attending the Conference on Retroviruses and Opportunistic Infections in Denver on Monday. The event's policies prohibits on-site news conferences or releases during the conference, and efforts to reach scientists there were not successful.

Of the few AIDS research luminaries reached, all said they preferred not to comment on the Vanderbilt tests until full results are published.

bmims@sltrib.com

*2

TACI is mutant in common variable immunodeficiency and IgA deficiency.

Castigli E, Wilson SA, Garibyan L, Rachid R, Bonilla F, Schneider L, Geha RS.

Division of Immunology, Children's Hospital and Department of Pediatrics, Harvard Medical School, 300 Longwood Avenue, Boston, Massachusetts 02115, USA

. None of these mutations were present in 50 healthy subjects. TNFRSF13B mutations cosegregated with the phenotype of CVID or IgAD in family members of four index individuals that we studied. B cells from individuals with TACI mutations expressed TACI but did not produce IgG and IgA in response to the TACI ligand APRIL, probably reflecting impaired isotype switching. These results suggest that TACI mutations can result in CVID and IgAD.

Laboratory:

Tick Specialty Labs: Too Many Positive Findings?

They Save Lives

By James L. Schaller, MD, MAR, PA, DABPN, DABFM

I asked Dr. Harris, from the internationally respected, IGeneX labs, to reply to the dubious comment that IGeneX "only has positive findings." This is not valid for many reasons. First, many physicians using IGeneX get negative results. Further, IGenex has done quality assurance studies with appropriate negative findings in uninfected controls. And the company, as you can see below, has done a great deal to be certified and licensed.

The "all results are positive comment" is lazy, sloppy and uninformed. Lyme is the leading vector illness in the USA. A positive result should not be rare.

*********

IGeneX, Inc. is a reference laboratory located in Palo Alto, California specializing in Lyme disease and other tick-borne diseases. We take pride in the quality and diversity of the testing that we perform on samples from around the world.

IGeneX is licensed by CMS (Centers for Medicare and Medicaid Services) and is strictly regulated by CLIA. We are licensed in all states, including California, New York, Pennsylvania, Maryland, and Florida where special licensing is required. The laboratory is inspected by these state and federal agencies on a regular basis. A Ph.D. consultant is also used to ensure that our laboratory is current with all the compliance regulations.

IGeneX participates in all proficiency programs required, such as New York State. Independent specialty laboratories, such as IGeneX, who have a narrow focus in testing, typically are not certified by CAP, but we do participate in the CAP Proficiency programs.

IGeneX has been testing clinical samples for over 11 years. The staff consists of a Laboratory Director, an MD Clinical Consultant, and several other MDs who also are licensed Clinical Laboratory Scientists who manufacture and perform tests. The personnel responsible for the test quality and performance are all licensed Clinical Laboratory Scientists, most of whom have been with IGeneX for many years. Our Research team is comprised of qualified PhDs and MDs and experienced Research Associates.

Customer Service is our main goal and the office staff is always willing to assist our patients and physicians. We take pride in our trained personnel that have worked together for years. IGeneX is continually working on the advancement of existing tests. In addition, IGeneX is committed to designing and researching new technologies and opportunities. Our goal is to give Lyme patients and their physicians state-of-the-art tools for diagnosis of Lyme and other tick-related diseases.

Please feel free to contact me personally at 800/832-3200 if you have any concerns or questions. We truly appreciate our patients and clients.

Sincerely,
Nick S. Harris, Ph.D., ABMLI President/CEO

[Steve Andison Comment] The Federal Center for Disease Control periodically ships identified samples of what they know to be positive and negative samples to IGeneX to determine the accuracy of their testing procedures. Their accuracy rate for both positives and negatives is unsurpassed by any facility in the United States and with their state-of-the-art techniques and equipment, they may be the most accurate lab for diseases carried by ticks.

IGeneX, Inc. 797 San Antonio Rd., Palo Alto, CA 94303 USA
Tel. 650-424-1191 Toll Free. 800-832-3200 Fax. 650-424-1196 igenex@igenex.com

http://www.igenex.com/newsopt1.htm

Doctors:

Steven Harris, MD
200 Providence Mine Road
Suite 110
Nevada City, CA 95959
530-470-9184

Joseph J. Burrascano, Jr., M.D.
139 Springs Fireplace Road
East Hampton, NY 11937
(516) 324-7337

Dr. Michael J. Cichon
In medical practice for 35 years
Specialties Infectious Disease Medicine, Internal Medicine
9804 North 56th Street, Tampa, FL. 33617-4802
(813) 985-5513

Virginia T. Sherr, MD
47 Cresent Dr
Holland, PA 18966-2105
(215) 322-6567

Nick S. Harris, PhD, ABMLI President/CEO IGeneX
797 San Antonio Rd.
Palo Alto, CA 94303 USA
Tel. 650-424-1191 Toll Free. 800-832-3200 Fax. 650-424-1196

Audrey Stein Goldings, MD
11617 N Central Expresway
Suite 140
Dallas, TX 75243-3845
(214) 357-1878 The contacts above can lead you to other contacts across the nation and in Canada.

There are also many studies and organizations dealing with these diseases, some of which are included below.
IDSA- Infectious Diseases Society of America
NIAIDS- National Institute of Allergy and Infectious Diseases
CDC- Center For Disease Control
ILADS- International Lyme and Associated Diseases Society
LDA- Lyme Disease Association
The following piece by Lorraine Johnson, JD, MBA, Executive Director of California Lyme Disease Association is very close to my own findings, and articulates the issues very clearly.

Lyme Disease: Two Standards of Care

By Lorraine Johnson, JD, MBA Executive Director, CALDA (California Lyme Disease Association)
Updated February, 2005

The central difficulties in the diagnosis and treatment of Lyme disease stem from the lack of sufficiently sensitive and reliable biological markers of the disease. Without such markers, it is difficult to determine who has the disease, the effectiveness of a course of treatment, and the end point of treatment. The ideal antibiotics, route of administration, and duration of treatment for persistent Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.[1–3]

Opinion within the medical community is deeply divided regarding the best approach for treating Lyme disease, particularly persistent Lyme disease that is not cured by short-term protocols. This split has resulted in two standards of care. Both viewpoints are reflected in peer-reviewed, evidence-based guidelines. Some physicians treat patients for 30 days only and assume that remaining symptoms reflect a self-perpetuating autoimmune response.[4] Other physicians assume that the persistent symptoms reflect on-going infection and gauge the duration of treatment by the patient's individual clinical response. These physicians believe that there is insufficient evidence at this point to adopt standardized treatment protocols.[5]

While each viewpoint has a strong underlying hypothesis, the scientific evidence supporting either viewpoint is equivocal. Outcomes research is limited and conflicting. The NIAID has only funded three double-blind, placebo-controlled treatment outcome studies for long-term treatment of persistent Lyme disease. The findings of two studies (Klempner and Krupp) are contradictory, with one indicating that continued treatment is beneficial for treating fatigue and the other indicating that it is not.[6–8] The third NIAID-funded study has recently been completed and preliminary results support continued antibiotic treatment for patients with persistent Lyme disease.[9] The findings of five non-controlled studies support continued treatment.[1, 10–13] The existence of limited or conflicting controlled studies is not uncommon in the practice of medicine. Where this is the case, the unique clinical course of the patient, of necessity, bears the laboring oar in treatment decisions.

Insurance companies have placed the full weight of their economic clout behind the less expensive short-term treatment protocols. More expensive longer-term treatment options are discredited as "experimental" or "not evidence-based." The point, of course, is that the science underlying both the short-term and the longer-term treatment options is equally uncertain (like prostate cancer). The appropriate response to equivocal research findings in healthcare outcomes is to fund more research. It is estimated that only 20% of medicine practiced today is rooted in double-blind studies.[14] The bulk of medicine today is practiced in the grey zone. Evidence-based medicine requires only that medicine be practiced in accordance with the evidence that currently exists, not that treatment be withheld pending research.

Insurance companies have adopted guidelines reflecting short-term treatment approaches. However, the legal standard of care for treating a condition is determined by the consensus of physicians who actually treat patients, not by treatment guidelines.[15] Moreover, more than one standard of care may exist. A number of surveys have found a fairly even split among treating physicians. One survey found that 57% of responding physicians treat persistent Lyme disease for three months or more.[16] Fallon notes that for over 3400 patients screened for the Columbia University study of persistent Lyme disease, the mean duration of IV treatment was 2.3 months and the mean duration of oral antibiotic therapy was 7.5 months.[6] In another survey, “50% of the responders considered using antibiotics for a time greater than one year in a symptomatic seropositive Lyme disease patient. Almost that same number would extend therapy to 18 months if needed.”[17] For treating early Lyme disease, there are conflicting surveys. Most physicians responding to one survey specified short-term treatment[18], while 43% of those responding to another survey would treat erythema migrans-positive Lyme disease for three months or more.[16] All jurisdictions that have considered the matter have found two standards of care in the treatment of Lyme disease.[19]

When more than one standard of care exists, the critical question becomes who decides the appropriate course of treatment for the patient. Under the medical ethical principle of autonomy, the treatment decision belongs to the patient. Hence, the American Medical Association requires that the physician disclose and discuss with the patient not only the risks and benefits of the proposed treatment, but also the risks and benefits of available alternative treatments (regardless of their cost or the extent to which the treatment options are covered by health insurance).[20] For example, patients with prostate cancer (where significant uncertainty exists regarding long-term treatment outcomes) must elect between watchful waiting, radiation and surgery. The legal doctrine of informed consent also requires that patients be advised of material treatment options. Treatment choices involve trade-offs between the risks and benefits of treatment options that only patients-who know the kinds of risks they are willing to run and the types of quality of life outcomes that matter to them-are uniquely suited to make.

Sound health care policy follows suit, with healthcare costs generally witnessing a reduction when the patient's preference is supported. Patient preference exists whenever there is more than one acceptable treatment approach. When inefficiencies in the Medicare system were analyzed by looking at small area variations in medical practice, most variation in preference-sensitive care was found to reflect physician opinion. In patient preference situations, patient and provider values are often in conflict and public healthcare researchers recommend reducing the medical practice variations in these situations by “reduc[ing] scientific uncertainty through outcomes research... and establish[ing] shared decision-making for preference-based treatments.”[21]

Respect for the basic autonomy of the patient is a fundamental principle of medical ethics. Without adequate information about treatment options, their probable outcomes, and the risks and benefits associated with each, patients cannot act autonomously. Today, however, many patients are either denied treatment by their HMO physicians who follow actuarial treatment protocols generated to keep treatment costs down, or they must find an independent physician to treat them, with the all but forgone conclusion that coverage for this treatment will be denied by their insurer based on cherry-picked (economically favorable) guidelines. Moreover, HMO physicians generally do not advise their patients that treatment alternatives exist.

Scientific uncertainty about Lyme disease has resulted in more than one treatment approach (like prostate cancer). We agree with the AMA, ACP and other professional medical organizations interested in promoting informed patient consent and want to make sure that:

Physicians, insurers, patients and governmental agencies are educated that two treatment approaches exist; Physicians give patients sufficient information about treatment options to enable patients to make a meaningfully informed choice and respect the autonomy of that choice;

Insurance reimbursement be provided for treatment rendered in accordance with either standard of care; and Government agencies provide unbiased information and remain neutral regarding both standards of care and treatment approaches.

References

1. Oksi, J., et al., Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis. Ann Med, 1999. 31(3): p. 225–32

2. Coyle, P.K., Neurologic complications of Lyme disease.. Rheum Dis Clin North Am, 1993. 19(4): p. 993–1009

3. Hunfeld, K.P., et al., Standardised in vitro susceptibility testing of Borrelia burgdorferi against well-known and newly developed antimicrobial agents—possible implications for new therapeutic approaches to Lyme disease. . Int J Med Microbiol, 2002. 291 Suppl 33: p. 125–37

4. Wormser, G.P., et al., Practice guidelines for the treatment of Lyme disease. The Infectious Diseases Society of America. Clin Infect Dis, 2000. 31 Suppl 1: p. 1–14

5. The International Lyme and Associated Diseases Society (ILADS), Evidence-based guidelines for the management of Lyme disease. Expert Rev Anti-infect Ther, 2004. 2(Suppl): p. S1–S13

6. Fallon, B.A., Testimony at public hearings in re Lyme disease for the State of Connecticut Department of Public Health. 2004: p. 134–153. http://www.cslib.org/attygenl/health/0129lyme.pdf

7. Klempner, M.S., et al., Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med, 2001. 345(2): p. 85–92.

8. Krupp, L.B., et al., Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology, 2003. 60(12): p. 1923–30.

9. Fallon, B.A. Laboratory findings in chronic Lyme disease and results of the controlled treatment study. in Columbia University/LDA’s Lyme & Other Tick-Borne Diseases:Technology Leading the Way Conference. 2004. Rye Town, NY.

10. Wahlberg, P., et al., Treatment of late Lyme borreliosis. J Infect, 1994. 29(3): p. 255–61.

11. Oksi, J., J. Nikoskelainen, and M.K. Viljanen, Comparison of oral cefixime and intravenous ceftriaxone followed by oral amoxicillin in disseminated Lyme borreliosis. . Eur J Clin Microbiol Infect Dis, 1998. 17(10): p. 715–9

12. Fallon, B.A., Repeated antibiotic treatment in chronic Lyme disease. J Spirochet Tick Borne Dis, 1999. 6 (Fall/Winter): p. 94-101.

13. Donta, S.T., Tetracycline therapy for chronic Lyme disease. Clin Infect Dis, 1997. 25 Suppl 1: p. S52-6. www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=9233665

14. Hitt, J., The year in ideas: a to z.; evidence-based medicine., in New York Times (December 9, 2001, Sunday).

15. Hurwitz, B., Clinical guidelines and the law. BMJ, 1995. 311: p. 1517–1518.

16. Ziska, M.H., S.T. Donta, and F.C. Demarest, Physician preferences in the diagnosis and treatment of Lyme disease in the United States. Infection, 1996. 24(2): p. 182–6. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=8740119

17. Katzel, J., Is there a consensus in treatment of Lyme Borreliosis?, in Lyme Disease 1991 Patient/Physician Perspectives from the U.S. & Canada, L. Mermin, Editor. 1992.

18. Murray, T. and H.M. Feder, Jr., Management of tick bites and early Lyme disease: a survey of Connecticut physicians. Pediatrics, 2001. 108(6): p. 1367–70. "http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=11731662

19. In the Matter of Joseph Burrascano, M.D., Determination and Order (No. 01-265) of the Hearing Committee dated November 6, 2001. http://w3.health.state.ny.us/opmc/factions.nsf

20. American Medical Association, Code of Medical Ethics. http://www.ama-assn.org/http://www.ama-assn.org

21. Wennberg, J.E., E.S. Fisher, and J.S. Skinner, Geography and the debate over Medicare reform. Health Aff (Millwood), 2002. Supp Web Exclusives: p. W96-114. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12703563

Please do not hesitate to contact me regarding any misgivings or questions you may have. Please make contact with doctors who have extensive experience with Lyme disease. Speak with physicians on both sides of the fence; but try hard to understand which side of the fence we are on and find rationale that will allow you to respect our wishes. If you cannot support us in our decisions, then please inform us of that fact in the very near future. We must move on to someone who will support us and make an honest attempt to improve Nancy’s life.

Please also feel free to update me with studies or new findings that you have or may come across. I am open to input as we go, but we do have to get going.

Steve Andison, for Nancy Andison

We have only recently established that Nancy has had a long term infection of Lyme disease (Borrelia burgdorferi) and babesia. It is our reasonable hypothesis that her immune system has become dysfunctional in reaction to these pathogens, that dysfunction is Multiple Sclerosis. Because Nancy contracted this disease between 1983 and 1985, the treatment protocol must be protracted compared to typical treatment of individuals who are treated soon after infection.

We are first treating the underlying disease while we are controlling symptoms of multiple sclerosis. When treatment of Lyme disease is complete, we will determine what remaining neural and muscular deficit remains and then we will focus on those challenges.

My wife, Nancy Andison is suffering from advanced MS. We are exploring a theory that demands that we treat MS as a symptom of an underlying invasive pathogen. We are focused on the Lyme/MS connection as there is significant clinical evidence to suggest that the ixodid vector may indeed have introduced disease into Nancy’s system and that her immune system acted in a dysfunctional way, or that the pathogens reprogrammed her thymus derived T-cells.

Nancy has been in prime vector environments for several years. She worked with field rodents, deer, and elk. She tracked them through grasses. On one occasion (in 1984) we had tracked a herd of elk in Oregon (through tall grasses) and after returning to base I discovered a bloated tick on her. I removed the tick and extracted the head separately. As she was a wildlife biologist doing field work in Oregon she may have been bitten on more than one occasion.

We would like to be in contact with others that have greater knowledge than we do regarding the Lyme and associated diseases connection with MS. Regardless of the camp you are in or the theory you have, we are compiling information and studies.

The most effective contact that you can have with us is via email (here).

Thank you for considering Nancy’s case.

Affliction:

Nancy Andison is a 42 year old female with severe chronic progressive Multiple sclerosis. She is virtually quadriplegic with neurological impacts on her breathing, speaking, swallowing, bladder and bowel control, and vision. Obvious brain and spinal sclera are present and established by MRI. Not only has myelin damage occurred but it is most likely that there has been axon destruction as well.

Medical History:

Nancy was a healthy child and young adult. She had no serious illnesses that were diagnosed until she was in mid 20’s. She was diagnosed with Multiple sclerosis when she was 26 (June of 1989). Although there was some evidence of Lyme disease, her primary diagnosis and focus of treatment was MS.

Nancy’s presenting symptoms were bladder hesitancy, slight foot drag on one leg, and severe emotional anxiety and depression. Diagnosed in June of 1989 (while still fully ambulatory) she was in a wheelchair by October of that same year. Chemical intervention was attempted with a series of 10-day intravenous ACTH treatments followed by weekly injections at home; but complications with ulcers arose. In 1991 she began Beta Seron injections every three days for 2 ½ years; complications from this drug resulted in a mandatory removal of her uterus. We then used Methotrexate for slightly less than a year but the side effects made Nancy very sick and there were no noticeable improvements. In 1995 Nancy began using Avonex and only recently discontinued this medication in mid January 2005. Interferon drugs provided no evident improvements. Nancy’s course of disease presented a fast onset, and then rapidly and chronically progressed, with only short periods of plateau.

Nancy had to quickly move from intermittent catheterization to an indwelling catheter and advanced to a superpubic catheter in March 2003. Nancy battled extreme spasticity and had numerous decubitis ulcers due to this spasticity. In February of 2004 she received a Medtronics Interthecal Medication Pump (continuous titration of Baclofen) and the implant has worked flawlessly and the difficulties with pressure sores have been alleviated.

Risks of aspiration became great; Nancy failed to thrive and was chronically dehydrated due to her inability to take fluids without choking. Her weight declined to about 119 pounds. In August of 2004 Nancy had a gastric tube implanted and her weight now ranges from 132 pounds to 136 pounds.

On a speech ability scale of 1 to 10 (1 being totally unable to sound, 10 representing normal abilities in vocalization) Nancy is now ranging between a 1 and a 7 on her best days. The ability to verbally express herself only lasts for several hours each day.

Nancy does not have any trunk control. Head tremors are continuous except when she sleeps. She does not appear to be able to sleep for more than about three hours each night. Her vision is affected by nystagmus and there may be other underlying age-appropriate optic problems causing poor vision.

Nancy cannot feed herself, she has some gradual onset of contractures, her fingers are beginning to turn in toward her palms, and her toe drop is significant. Her hearing, however, seems to be unaffected and very little cognitive change has occurred. Nancy has poor circulation in her legs and feet. Healing in this area is gradual.

Future Healing Protocols:

Whereas Nancy is at high risk of bladder cancer, urosepsis, aspiration pneumonia, pulmonary emboli, and arrhythmia; the real issue for lies in her quality of life. As standard courses of treatment have not shown any efficacy for her condition, Nancy is seeking alternative theories and unconventional treatments that have demonstrated promise.

Nancy no longer wants to suppress her immune system, but would like to balance and strengthen it. She would like to treat her MS as a symptom of a different causal disease rather than treat the symptoms of MS without addressing a potential pathogen or causal agent. In our new theory Multiple sclerosis is a major dysfunctional immune response to invasive bacteria.

One of the primary disease vectors we are looking at is the western tick. The simplistic and cursory methods that most doctors employ in this country to look at the potential of Lyme disease (and derivatives thereof) has not kept up with the knowledge and science that may now be employed. Many cases are being misdiagnosed or remain entirely undetected. If the true rate of incidence were known, I suspect that we would be able to trace the spread and threat of Lyme disease and its associated pathogenic and parasitic transfers. It is likely far more common than we currently understand and could reach near epidemic levels. It is not my intent to go into the science and sound reasoning behind these decisions, if our alternative methods show efficacy, I will update you on the path that we have taken and Nancy has chosen.

The basic treatment protocols will be built around nutrition and herbs with known therapeutic advantages. Intravenous vitamin supplements will be used along with some medications most typically used to treat malaria like disease. Known antibiotics will be selected and used as Nancy rebuilds strength. Her water intake will likely be doubled, and frequent water soluble antioxidants used several times each day.

A key element to her treatment protocol will incorporate bee venom therapy (BVT, or Apitherapy) and many bee products including bee pollen, propolis and royal jelly. Nutritional aspects will use better caloric sources and supplements.

Nancy has experienced all that the American Medical Association and western style physician attendance to her health issues. Of the many protocols that we have used, thus far only two remedies have shown promise. We have used two herbs and bee venom therapy that have produced dramatic and obvious improvements in Nancy’s condition. These directly associated and undeniable results would stand up to scientific scrutiny.

These therapies, while dismissed by the mainstream of western medicine, have been personally validated by Nancy and myself and witnessed by others. The improvements in Nancy’s health, when measured impartially, provide a scientific probability scale of confidence and definitively demonstrate that the improvements are only attributable to these alternative therapies. When the unavailability of resources forced us to discontinue these therapies, Nancy’s improvements reversed.

Despite the rather unorthodox remedies that we are seeking, we are far from abandoning good science; but we are judging efficacy on an outcome basis rather than a theoretical model that promulgates a unilateral FDA/AMA approach while denying the history of science, medicine and pharmacology. We are proposing an eclectic integrated modality of treatment from a worldwide knowledge base. All knowledge and theories are welcomed and considered, although we will be mindful not to introduce chemical substances that are contraindicated or that neutralize other areas of our developing treatment protocol.

We have heard so many theories about potential MS loci, and the primary modalities that should be employed first. We recognize that each school of thought, each specialty, and each researcher has the best of intentions and believe in what they have either been taught or their own pet theories. In each area of expertise we are laymen and less knowledgeable. However, the integrative modality we choose must make sense from our myriad of experiences and ultimately approved by Nancy Andison, and Steve Andison as provided by the Power of Attorney assigned to me, and by her living will. The East will meet the West. Traditional knowledge has merit. Anecdotal experiences will be explored. Knowledge from every source will be incorporated in giving Nancy her best chance at healing, some level of recovery, and quality of life.

Alternative Therapy:

BIRM: Biological Immune Response Modulator

http://www.birm.com/

Bittersweet Nightshade plant extract from the Amazon

Birmingham Institute Laboratory confirmed significant antiviral components, protection against destruction of T-4 lymph cells (destruction level in chronic disease decreased by 60%). Magnetic Nuclear Resonance demonstrated a cellular nutrient sugar of the lowest possible molecular weight. It is used to boost and balance the immune system.

Kalawalla: Polypodium leucotomos extract (http://www.rain-tree.com/samambia.htm)

Family: Polypodiaceae Genus: Polypodium Species: decumanum, leucotomos, aureum
Synonyms: Phlebodium decumanum, P. multiseriale, Chrysopteris decumana
Common Names: Samambaia, calaguala, huayhuashi-shupa, cotochupa, mirane, temakaje
Parts Used: Rhizome, Leaves,is a fern plant, which grows in the Honduran jungles and rain forests

Samambaia contains flavonoids, alkaloids and lipids and fatty acids. Within its lipids are sulphoquinovosyldiacylglycerols, which have been documented and patented as part of the plant's "active" chemicals. Primary chemicals found in this plant (thus far) include adenosine, alkaloids, arachidonic acid, arabinopyranosides, calagualine, ecdysone, ecdysterone, eicosapentaenoic acid, elaidic acid, juglanin, kaempferols, linoleic acid, linoleic acids, linolenic acids, melilotoside, oleic acid, polypodaureine, ricinoleic acid, rutin, selligueain, and sulphoquinovosyldiacylglycerols.

250 mg of standardized 50:1 extract

Dosage: 500 mg AM / 500 mg PM = 1000 mg/day

Samento: (Cat’s Claw)

Pentacyclic Alkaloid Type Uncaria tomentosa (free of tetracyclic oxindole alkaloids, (TOAs)) Containing 0.5% pentacyclic oxindole alkaloids (POAs).

http://www.nutramedix.com/pages/samento.html

Tapering up to 25 drops twice daily (ingested)

Marijuana:

Whereas we have no evidence that marijuana aids the healing process or permanently cures any MS related symptom (let alone the disease itself) we have found that marijuana does alleviate some of Nancy’s MS symptoms temporarily. The brief escape from some aggravating MS symptoms was welcomed and much needed by Nancy.

Nancy’s paralysis has further involved her diaphragm and her oxygen levels drop below 90% easily. She no longer uses marijuana even to relieve pain let alone as an escape. Her Lyme disease/ MS have caused frequent pre-ventricular contractions and a very weak “thready” pulse.

Although Canada has manufactured an innovative product (Sativex), (www.entheology.org/edoto/anmviewer.asp?a=226&z=1) with the beneficial chemicals of this herb, we are inclined to avoid the additional sedation or cognitive obscuration.

Apitherapy: (Bee Venom Therapy) (BVT) (via Apis Mellifera, the Honeybee)

Nancy receives approximately 40 Stings from live bees three times weekly. Stings are strategically placed according to known apitherapist protocols, trigger points, acupressure points, and acupuncture modality.

It is widely held (and we believe) that there are volatile chemicals which are only preserved in the live bee. Extraction, dehydration, purification, and reconstitution with diluents to produce pharmaceutical grade serum allows for the dissipation and oxidation of important components of bee venom. Therefore we have found by experience that bee stings from live bees are more efficacious and outweigh any perceived risks for people who do not have a hypersensitivity to bee venom.

The components of Bee Venom have been documented by a least four scientists from 1955 to 1972. Bee Venom contains several biochemical or pharmacologically active substances, including at least the following: histamine, dopamine, melittin, apamin (mast cell destroyer - MCD), peptide, minimine, and the enzymes - phospholipase A, and hyaluronidase. There are at least eight protein fractions of Honeybee Venom, of which phospholipase A, melitten, and apamin are the three major ones. There are over 35 fractional components of bee venom, as well as synergistic and unidentified components.

Bee Venom therapy has been used as a treatment in many cultures around the world for centuries and in recent times has been advocated for use in the United States by a growing number of physicians. Whereas it may be difficult to quantify, synthesize and identify all of the beneficial components in bee venom with today’s science we must remember that over 60% of current medication had its origin in a natural form and over 80% of the world’s population relies upon natural remedies that actually have pharmaceutical properties. Many of the drugs widely dispensed by physicians today are prescribed for documented desirable side effects of chemicals even though they do not understand the etiology or biochemical interactions of (let alone the cellular and molecular level science) that produces the results. These doctors correctly use anecdotal evidence even if long-term side effects have not been documented.

The only difference in our personal approach compared to the AMA is that we are employing thousands of years of anecdotal evidence which has never been demonstrated and documented in a double-blind study. When there is either a comprehensive study, or when there is a preponderance of anecdotal and cultural evidence, the pharmaceutical efficacy of the chemical should be recognized and employed. The FDA will not approve the anecdotal approach and expects society to wait just a little bit longer until they have a proven treatment. Pharmaceutical and scientific progress is efficient in global terms, but the progress is akin to glacial or evolutionary time periods.

Science will provide tremendous cures (in time) and researchers pass their accumulated knowledge and data on to future researchers. But for someone who is facing their mortality or loss of quality of life within 5 years; a projection that a cure will “likely” be available within the next twenty years is of NO COMFORT. Sometimes we all know that “it” works, but it takes a century for science to catch up with knowledge and demonstrate “why” it works.

Royal Jelly: Nancy takes 1 teaspoon or royal jelly mixed with 1 tablespoon of raw honey twice daily.

Royal Jelly contains at least 17 amino acids, including the 8 essential amino acids, plus 5 unidentified related compounds. Aspartic Acid is a major amino acid, necessary for tissue growth. Royal Jelly also contains the amino and gamma globulin, which strengthens the immune system. It also contains sterols, phosphorous compounds and acetylcholine aiding neural transmissions and theoretically fights nerve disorders such as Parkinson’s disease, Alzheimer’s and Multiple Sclerosis. Japanese researchers have also found that Royal Jelly has a dramatic effect on Sarcoma cells.

Royal Jelly is rich in the important Nucleic Acids RNA and DNA, which produce many benefits throughout the body.

A study conducted in Germany has revealed that the daily use of propolis, royal jelly and pollen is an excellent way to lower cholesterol without the side effects of statins.

Bee Pollen: 1 teaspoon twice daily

Honeybee pollen contains every known vitamin, all of the minerals, proteins (amino acids), enzymes and coenzymes, fatty acids, and carbohydrates that our bodies need to sustain life in perfect balance.

Bee pollen has at least 96 active nutrients, including 22 amino acids, 27 mineral salts, 16 vitamins (including B-12), trace elements, fatty acids, hormones and enzymes." One pound of pollen is comparable to 15 pounds of fruits and veggies.

Pollen is a potent food source supplying all nutrients to maintain healthy immune systems and general overall good health. Whereas bee pollen is not a drug or cure, it promotes healing by its condensed nutritional values; aiding the body’s own healing properties.

Bee pollen is believed to regulate the function of the endocrine system, aid digestion, reduce stress and increase alertness and stamina. Bee pollen has more protein by weight than red meat, fish or eggs.

Bee pollen is the richest known vegetable source of steroid hormones which improve overall strength, muscle mass, and endurance. Pollen is known to accelerate healing, and increase CBC concentrations.

Bee Venom Eye Drops: 2 drops three times daily. Somewhat experimental, but tests have shown that there are no evident negative side effects for people who are bee venom tolerant. Nancy reports better acuity and clarity after 7 days of use. However, I have not yet noticed a change in nystagmus.

Bee Propolis: 1 teaspoon three times daily

Propolis has been demonstrated as an effective antibiotic in its own right; but is also believed to have synergistic properties when used with other antibiotics such as penicillin and drugs in the myacin family. It is called Russian Penicillin as it has been used for generations there and is affordable. Studies began in Russia, but were abandoned early on by World War II. Today the properties of propolis and other bee related health supplements are beginning to attract funding for full studies to determine potential benefits in fighting diseases that are becoming resistant to our widely used antibiotics.

Propolis is also credited with, antifungal, antiviral, analgesic, and anti-oxidizing properties. As medical science defined hypertension other cultures began to recognize a correlation between use of propolis and the absence of circulatory problems (including high blood pressure); even though they were primarily using it to treat sinus and bronchial ailments associated with allergies and asthma.

Propolis is an excellent source of histamine and serotonin, two tissue hormones needed by the body to help cope with allergies. These chemicals generate our allergic reaction when tissues are attacked by an allergen. Bee pollen combined with propolis has demonstrated a potential to provide these chemicals to defend against allergens without the full onset of an allergic reaction.

Future investigative treatment supplements:

The Multiple Sclerosis Society is accumulating a massive list of treatments that are being utilized by any MS patient willing to fill out the survey form. Eventually they hope to find correlations with successful treatments (traditional and alternative) that have demonstrated statistical significance in developing survey results. The listing of the supplements and treatments is comprehensive and ongoing. We will be reviewing these anecdotal reports for additional tools in fighting primary chronic progressive MS.

Most drugs have existed in natural form before man has attempted to concentrate, isolate, identify, name, or synthesize the pharmaceutically active ingredients. Many of these drugs are present (in diluted form) in herbs and cultural remedies. Many medicines are yet to be discovered in nature, primarily in plant or fungal form, as well as antibodies created by other organisms. Some herbs that have demonstrated some anecdotal benefits in fighting immune system disorders follow. We cannot define the active ingredient let alone the molecular weight of each culturally reputed herb, but science will continue. Until all is known, some of us must simply rely on advice, shared experience, and the most basic foundation of testing hypotheses … trial and error.

One at a time we can test ancient Chinese, South American, Native North American, and other cultures’ traditional medicines to determine which are simply superstitious and which are efficacious. We are scientific and are not inordinately adventurous. We are certain, however, that the customized alternative treatments we have been exploring have definitively produced more positive results and progress (with fewer side effects) than our many years of conventional treatment could possibly attain.

jergon sacha, mullaca, macela, sangre de grado, tayuya, iporuru, manacá, pau d'arco, amor seco, mulungu, bitter melon, clavillia, vassourinha, gervâo

Nutrition:

Nancy consumes six 8 FL OZ cans of Jevity 1 Cal with fiber [1422 mL] [1500 Cal] per day via her gastric tube. We supply 200 ml of water three times [600 mL] daily via gastric Tube. She also takes a small supplemental amount of liquid vitamins and minerals to round out recommended daily allowances especially since she is not weight bearing. At this time she is still able to take some food by mouth as well as gastric tube feedings.

Weight:

Nancy’s most current weight is 138 pounds (as of 3/2/05). Nancy weighed 122 pounds when she received her gastric tube on 09/09/04 and her weight has fluctuated between 142 pounds and 132 pounds since then. Target weight is 135 pounds.

Allergic Reactions to:

Penicillin- Nancy had an allergic reaction to Penicillin as an infant and has not been reintroduced to that particular antibiotic since then.

Xanaflex- Nancy responds poorly to Xanaflex; hypotension, very low heart rate, and cardiac synapse anomalies occur on this medication.

Baclofen Pump:

Nancy has a Medtronic drug infusion pump installed in her abdomen. It delivers Baclofen interthecally via micro-dose titration. A very slight beep will be occasionally heard if the pump is running low. If the pump is entirely empty the beeping will be more frequent.

A refill of the pump reservoir will usually last for 51 days at the current dosage level (as of January 2005). The pump is not battery driven and operates on a passive pressure inert gas bladder to provide resistance and therefore pressure when the reservoir is filled with liquid medication.

The pump has three sealed chambers. One contains an electronic module and battery; another contains a peristaltic pump and drug reservoir; and the third contains an inert gas. The gas provides the pressure that is used to force the medication into the peristaltic pump. The drug reservoir is filled via needle and syringe through the skin into the “fill port”.

Internal components of the SynchroMed EL pump

We are compiling information regarding the most recent opinions, studies and publications about the use of antibiotics that target Borrelia burgdorferi and Babesia microti. We are aware of a wide spectrum of opinions, conclusions, and recommended protocols. But we require all of the information we can acquire to share with our physicians and to employ with the greatest amount of confidence that we can substantiate in the near future.

Please feel free to share your information and favorite studies with us, as well as recommendations for specialists in this field that we should consult.

Thank you,

Nancy, Steve, Dara

The Andison family.

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