I completed this article after four intensive months of research. Since writing it, Dr S has edited his statements on the chronicneurotoxin website. There are also a few other doctors taking advantage of this money making opportunity by creating their own websites.
To my knowledge, there still has not been identified a neurotoxin produced by Borrelia burgdorferi. I think this material is worth considering when making a decision about treatment.
The emails I got directing me to his website came from individuals who used personal profile info including email addresses on lymenet.
Dr S never once directly answered my questions about his claims, but he did resort to name calling and veiled threats, which I have ignored. A good doc worth his salt, who has peer reviewed published, in all likelyhood would let his work and reputation stand on its own. I have not accused him of anything, but have stated the facts that I found and given information hopefully that Lyme victims can make an informed decision.
And recently, my daughter who has Lyme passed the VCR test given by our eye doc. I have edited out Dr S's name in this posting.A STROLL THROUGH THE WEB JUNGLE
A Close Look at a Neurotoxin Website
Terri R
I am not a scientist nor a medical professional of any kind. This article chronicles my journey of careful examination and research into claims made on the www.chronicneurotoxin.com website promoted by Dr. Richie S. The opinions formed are my own.
In the winter of 2001, I began receiving some personal emails, from people I did not know, directing me to the web site. It only took one post on a popular Lyme site to find out that others, who had listed their E-mail addresses, had also received emails inviting them to visit the neurotoxin website. I decided to take a look.
Some pretty interesting claims were presented on the website. Diagnosis of Lyme was "fool proof" and treatment consisted of the use of a cholesterol lowering drug that would rid the body of "a nasty suite of neurotoxins" produced by Borrelia burgdorferi. We miserable sufferers with Lyme (and other diseases) now had a chance of ridding ourselves of all our symptoms. Life could be great again! Now that sounded pretty amazing, simple and too good to be true.
Some of the wording and promises of cures sounded similar to the promises we all hear.. "add inches to your biceps" or "lose inches from your waist within days" or "thicker, fuller hair in less than half an hour." Also there was a mixture of scientific and medical jargon with broad scary statements and insinuations about the disease, and claims that this test and treatment would be the one chance I had to rid me of my disease and symptoms. If that were truly the case, I would have certainly been on a waiting list of hundreds of thousands of people. I decided to research every statement made on this website about Lyme disease diagnosis and treatment.
I waded through the scenario written about "one of the most debilitating diseases of the modern world" lurking in the backyard bushes. True enough. About how widespread the disease is, again true. Citing the "conventional wisdom" that many doctors hold to of three weeks of heavy antibiotic treatment, and the dictates that it will drive out the Lyme bacteria with "germ-killing drugs" and then the "painful symptoms of the disease will rapidly leave the patient." He goes on to state that" thousands" of Family Practice physicians are challenging this assertion regarding the duration of CLD(Chronic Lyme Disease.) I have had a lot of trouble finding one. He continues "Increasingly, the Family Practice docs are grappling with cases in which the major symptoms of Chronic Lyme Disease persist for years, despite proper antibiotic treatment in patients." Was he referring to proper treatment as the previously mentioned three weeks of antibiotics? He then goes on to explain that until quite recently, doctors were hampered by the lack of reliable diagnostic testing to confirm the presence of Lyme bacteria, along with "the disease causing toxins they produce and then release into the human body." Is he including all testing for Lyme, including cross-testing and clinical history? And just what are these toxins? I continued reading.
"Already struggling with the debilitating symptoms of their tick-borne disease, Chronic Lyme sufferers are patronized with insulting regularity by physicians who don't understand the biochemistry involved in chronic, neurotoxin-mediated illnesses, of which CLD is only one." He then describes how we go from physician to naturopath, to herbalist, to acupuncturist and other non-traditional healers. Dr. Shoemaker explains the dynamics involved in his correct understanding of the disease, and his treatment protocol. He claims that Borrelia burgdorferi produces a "nasty suite of neurotoxins" which remain in human fatty tissues found in nerve, muscle, brain, lung and bile, rather than in the bloodstream as happens with more common illnesses. Since these toxins move through the body's fat storage system and bile, they cannot be reached by the "antibodies" that "search out and destroy invading microorganisms in the bloodstream. Instead, they "continue to travel throughout the tissues for years at a time, triggering such classic symptoms of Lyme Disease." I wonder if he is saying the toxins can't be found by the antibodies, or the bacteria?. In reading many of the published research papers on Bb taking on many forms and hiding out in the body, I had not read of them producing a toxin.
Thus began a search deep through the jungle of information, papers, articles, abstracts and other materials available through the Internet and by phone interviews with many professionals.
I felt the claims made so far were pretty fantastic. I had never read any statements of 100% certainties about cure for CLD. I felt some of this information on the website could prove to be misleading, especially for those newly diagnosed or still searching for a diagnosis. Certainly for patient who had not had time to learn much about the disease, these statements may sound plausible, provide false hope (which can be devastating)and at worst lead to treatment failure and relapse. I felt it was too good to be true. I was especially concerned that Dr. S seemed to be stating that if you were not better with three weeks of antibiotic treatment, then you had a situation that was caused by the neurotoxin poisoning your system. This sounded a bit like similar diagnoses of Post-Lyme syndrome. In other words, the doctor on the website seemed to be saying that if we still had these symptoms after three weeks of treatment, we were cured of Lyme and had something else.
At this point I began asking very important questions of Dr. S. What diagnostic tests did he use to diagnose, and did he test and treat for the coinfections? What was the length of treatment with antibiotics for Lyme? How did he know that a patient would be free of Lyme? What did he recommend for treatment if he did find an active case of Lyme? What tests other than the VCS provided proof of toxins in the system? After several attempts to find answers to these basic questions, Dr. S told me that I did not have enough information to be asking him questions. I decided to continue to delve into the statements made on the website and search further. With the help of a lot of people, months of searching, asking, reading and questioning, I did find answers. I do not know what Dr. Shoemaker's answers would have been, but I can provide the answers that other professionals gave.
Dr. S's claim is based on the theory that once we are rid of the Lyme bacteria we still have the symptoms because the "nasty suite of neurotoxins" emitted by the Borrelia burgdorferi are not metabolized or excreted by our body, but instead bind with fat where they continue to cause the symptoms of Lyme Disease. This prompted immediate questions for him, which unfortunately have remained unanswered. How would he be able to detect the absence of Bb from the body? If conventional testing was not sufficient, how would he know when we were cured and at what point would his protocol for "cure" be most effective for Lyme patients.
I researched the statement that tick-repellents do not work. There are some mixed reviews, but most sources state that some types of repellents are very useful. The US Army has developed very effective methods. The American Academy of Pediatrics (and all other sources I contacted) states that repellents containing DEET are highly effective when used according to label directions, with a warning that they should be used sparingly but reapplied often, not on the hands and face. Concentrations of 30% or lower are very effective. Sprays containing permethrin are particularly effective but should be applied only to clothing. This kills ticks on contact. Tom Grier and Dr. James Katzel of the Lyme Alliance website have posted articles which describe ways to protect yourself and your property.Many reports are available about the studies done by the US Army who is running an excellent tick repellent program for our men and women in uniform. (they are also developing a tick testing kit to be used in the field.) There soonwill be a DEET containing product available that is said to be safe to use directly on the skin.
I took a careful look at the use of VCS test. This test is at the center of Dr.Shoemaker's claims of diagnostic capabilities through his website. I happened to be familiar with the test first hand. It was one of the tools used at the onset of my symptoms in the mid-1980s. I had a myriad of testing done. It was the first time I had ever experienced such a thorough medical exam... MRI, CAT scan, blood work, the works. I lived and worked in the area of East Carolina Medical School in North Carolina. The hospital is one of the best in the South. The last test my neurologist conducted was the Visual Contrast Test. It was the only test which showed any dysfunction. My doctor said, "You failed the test, but I cannot tell you why. This test just shows that there is something going on, something wrong with your optic nerve, but I have no idea what." He was very kind, but very puzzled. All of my other tests were normal, and I scored very high in neurological functioning with no impairment of my cognitive skills or movement.
It would be many more years before I was correctly tested, diagnosed and treated with antibiotics. I improved immediately, and have continued to improve with on-going testing and treatment for the coinfections. Gaining a degree of health and a computer allowed me to learn much more about what was happening to my body. When I saw the VCS test being advertised as an "exam that can lead to diagnosis of Lyme disease" that can "pinpoint the diagnosis" being a "reproducibly reliable, inexpensive and non-invasive test that makes a virtually foolproof diagnosis of Chronic Lyme readily available" I remembered the puzzled look of my neurologist, and his inability to make a diagnosis based on the results of this exact test.
I decided to find out more about this test. I had the wonderful opportunity to come in contact with Dr. Art Ginsburg, an exceedingly pleasant Vision Scientist, who among many other achievements, developed and holds the patent on the Visual Contrast(VCTS) and the FACT clinical test systems. His work continues and he specializes in Visual Forensics, and has been featured on "60 Minutes." All of this is documented and explained clearly at www.contrastsensitiviey.net. Dr. Ginsburg was very helpful and informative, patiently answering all of my questions by telephone and by e-mail. After becoming familiar with how Dr. S was using the test, he had some concerns and questions of his own. He was not at all sure that this test was going to work well over the Internet, and was just beginning to look into that area himself. He had published a book in the 1980s detailing calibration for distance and contrast for the test to be accurate. He stated in that book that doctors use the charts rather than the computer systems to attain accuracy.
He also stated that the Visual Contrast Sensitivity Test cannot in and of itself make a definite diagnosis of any particular disease. "The VCS measures the total visual function (optics and retina-brain system) not just the optic nerve function. The test results can tell a doctor that there is something wrong with the patient that has affected the visual system. Further data are needed to determine what is wrong and the site of the problem. Contrast sensitivity by itself cannot diagnose neurotoxins but can be an important indicator of the effects of neurotoxins given other symptoms and findings associated with the effects of neurotoxins." He further stated that Dr. Shoemaker "has to rule out all other possibilities for the decrease in CS (contrast sensitivity) before making a claim the CS loss is due to neurotoxins. If, however, he suspects neurotoxins are causing a loss in CS and treats the patient for neurotoxins and their symptoms go away and the CS returns to normal then he has a correct diagnosis and cure." That was a lot of "ifs" that needed to be checked out further. Was Bb producing a toxin, and was it treatable with Cholestryamine? What other types of testing would Dr. S require to determine a diagnosis, and the presence of toxins? Again, these answers remain with Dr. Shoemaker.
Dr. S also makes the comment that the VCS is a little known test, but I had heard of it, and every neurologist and eye doctor that I questioned uses it all the time. They also said it could not determine if there was a specific problem. It could suggest that further testing needed to be done...that there was a problem.
Then I went into the website to take the VCS test. Dr. S states on the website that "the VCS exam demonstrates the effect of neurotoxins on the optic nerve and the array of connected nerves in the cortex of the brain." How could that be possible with no further testing? How could he rule out all other possible diseases and conditions that would affect the outcome of the VCS test? I went again to the page about Lyme Disease. Maybe I had missed something. Maybe there would be further testing available. No, the only mention of testing was again the VCS test. I was very intrigued with what the outcome might be. Would he possibly be able to determine if I had Lyme, or any one of the other many conditions mentioned on his website?
As required on the website I registered and $8.95 to take the VCS test and was presented not with the VCS test, but a few questionnaires. I was asked to indicate whether I had symptoms of fatigue, headache, eye or sinus problems, and joint pains. All these were familiar questions I had answered before for other doctors. Then I was asked if I had ever had Lyme Disease, been to the waters on the Eastern Seaboard, the Caribbean, did I eat fish there, have occupational exposure to pesticides and solvents, have "sick building syndrome" or MCS (Multiple Chemical Sensitivity.) wartime exposure to vaccinations, had I worked, visited or played adjacent to agricultural land that had been abandoned for chemical problem? That seemed to me to cover a lot of possibilities.
I finished the questionnaires and went on to take the VCS test.
The experience I had taking the test was difficult to say the least. There were many problems with the test. The screen consisted of three blocks of patterns, like a ruffled potato chip design. Above it was a single patterned block. The instructions were to select the one of the three that matched the single one above. There were 90 different screens, and each time I finished one match I would be given the next. I was to sit a certain length from the computer and make sure my vision fit in with the limitations of the test.
The problems with the web site started early on in taking the test. More than half the screens were incomplete in some way, either split, or missing patterned blocks to choose from, or there was no response and I would have to wait for the screen to clear. All in all it was frustrating, and I felt that no medical diagnosis could be made from this experience. The only comparison I had in my experience was the test I had taken in the neurologist's office nearly twenty years earlier. That had been on a TV monitor and there were no problems with the performance.
I was frustrated. When I contacted the webmaster, Alex Hudnell, I was told that something must be wrong with my computer. My computer had been working fine. Then he said that the settings were not right. I checked with technical support and the settings were fine. Then he said I could take the test again. When I finally took it again, about a month later, things worked well, but my email address kept being rejected so I could not get any results. I had a few questions about the test, which were answered by H.K. Hudnell, of the US EPA. This is the same source who published (including a disclaimer) Dr. S's two reports on the use of VCS and treatment of other conditions (also listed on the website) with cholestyramine.
Within the hour of finishing the questionnaires, I received an email from the website saying that there was a good chance that I had a neurotoxin mediated condition. A few days later, and after several prompts, I received the results of the VCS test itself. There was no diagnosis given at any time. I was then presented the choices. For a fee of $49.95 billed to my credit card, there was the opportunity to open a treatment protocol file. This included the cost of two additional VCS tests. Or I could request a consultation for a fee of $100 charged to my card. I was informed that my physician, or a referral specialist I selected from their growing list of participating physicians, would do the actual prescribing of medications for me. The $49.95 would not cover any non-participating physicians fees, nor would they prescribe for patients who have not yet been examined.
I had more questions... did the test results show I have Lyme Disease? If so, how should it be treated, how would they treat it? If not, would they send me to someone who would? Does the cholestyramine cure this disease? Again, these questions would remain unanswered by Dr. S. However, HK Hudnell Ph.D., the Neurotoxicologist at the US Environmental Protection Agency in NC, did address a few questions specifically by answering "the VCS detects neurologic impairment in visual function. Impairment can be caused by a variety of biotoxins (neurotoxins) such as those from Lyme bacteria, and some neurotoxicants, such as volatile organic compounds (solvents.) A VCS deficit by itself is not diagnostic of the specific cause of illness. Diagnosis of chronic, biotoxin-induced illnesses requires evidence of exposure potential, a multiple system symptom complex, a specific type of VCS deficit and a lack of confounding factors. The VCS deficit is an important objective indicator. In people with visual acuity of 20:50 or better, the deficit is not generally present unless you've had chronic exposure to solvents or biotoxin exposure." This was not in agreement with the claims made on the website. In fact it was stating the opposite. When I pressed him a bit further, and asked about the problems I had in taking the test, he replied that the website was being upgraded, and that he thought the "website provides a good service by compiling relevant data that can be presented to a physician, but it does not by itself provide a diagnosis. Diagnosis and treatment require that a physician see the patient in person." That was not made clear on the opening pages of the website either. Only after I have paid my money, taken a test that was not designed to diagnose anything specific, filled out a few questionnaires that would indicate in print if I had been in contact with toxins, would I be told that I need to see a doctor.
At this point HK Hudnell would not answer any more questions, nor would Alex Hudnell, the webmaster. I did ask for a refund but was told I would not receive one. I certainly did not receive a diagnosis or anything else I had been promised on the website.
I then began to seriously question the final statement that Dr. S basis his treatment on. Did Borrelia burgdorferi produce a "nasty suite of neurotoxins" as he claims? Did it produce even one? I took three giant steps into the jungle at this point and went on a journey that was long and thorough.
Is there a toxin that is produced by Lyme bacteria? This was the last big question I had. Taber's Medical Dictionary defines toxin as a poisonous substance of animal or plant origin. In Experimental and Clinical Neurotoxicology edited by Peter S. Spencer (Oregon Health and Science University) and Hubert Shaumburg (Albert Einstein College of Medicine) there are listed all the types of toxins you ever wanted to read about, from snake venom to botulism. In one chapter by W. Morton Grant entitled "The Peripheral Visual System as a Target" there are listed specific toxins known to effect the vision, such as absinthe, mercury, snake venom, and different chemical and environmental substances. He goes into great detail to define each type of impact the toxin has on nerves involving the eyes. On the use of tests for detection he says "In this case, when one wishes to test drugs and chemicals for possible toxicity to the visual system, the use of extra sensitive methods should offer advantages. This remains to be proved."
I did more specific searches on toxins and bacteria, Lyme disease and Borrelia burgdorferi and must have read close to 300 articles and abstracts, but nothing offered any proof to the assertion that Bb produced a neurotoxin.First I learned that some bacteria act as toxins, and some bacteria produce toxins. The reaction our bodies have can be the same in either case. Many bacteria have not been identified as producers of toxins. In other words, some bacteria are toxins that make us sick and others produce substances (toxins) that make us sick.
Dr Aravinda de Silva from UNC Department of Microbiology and Immunology responded to my questions early in the summer of 2002 concerning toxin production by Bb: .
People who have analyzed the whole Borrelia genome sequences
have not found any evidence of toxins in Borrelia that are similar in
structure to toxins produced by other bacteria. This means that Borrelia
does not produce toxins or produces toxins that are unique to Borrelia.
You can certainly quote me as stating that Lyme disease spirochetes do
not have proteins that are similar in structure to some of the well
studied toxins and virulence proteins in other bacteria. But it is
important to stress that this might mean that Borrelia do not have
toxins or that Borrelia have toxins that are unique to it.
The analysis that led to this conclusion was done by Dr. Claire Fraser
and her group that sequenced the whole genome of the spirochete. It was
published in Nature Vol 390, pages 580-586
Dr. Sam T. Donta at Boston University granted me a phone interview. I had tracked down one abstract titled "A Novel Toxin of Bb"(Sam T.Donta, MD, Mark J. Cartwright, Ph.D., and Suzanne E. Martin, Ph.D..) presented in April of 1999 at the LDF conference by Sam T.Donta. Dr. Donta said he was currently seeking funding to continue his research. During the interview, Dr. Donta explained patiently and clearly that there was a protein generated by Bb that appeared to affect the nerves and that this protein qualified as a toxin. He said that it might affect the sensory nerve cells and therefore the nerve cells may not function as effectively. When I asked him how this might affect us and how we might be tested for them, he said that SPECT Scans will show the affect to the temporal lobe and the frontal lobe of the brain and that aspects of memory and mood would be most affected.
I asked also how finding and identifying a toxin produced by Bb might affect our treatment. His answer was that it might not affect out treatment, but hopefully would lead to a better diagnostic test, as toxins in the body fluids produce a detectable marker. He feels that this toxin would prove damaging in small amounts as he suspects it is very potent. He also gave further hope in that it may lead to production of an antitoxin, or a vaccine, which would then "get to the heart of the matter" for prevention. He concluded by saying that further funding is needed for research into this area.
Further questioning of many professionals provided conclusive and consistent answers that IF there was a toxin of any sort present, and IF it happened to have a negative charge, and IF it happened to be in the gut, then it MAY bind with cholestyramine and be removed from the body. That may provide the patient with some relief of symptoms.
Dr. James Coleman, of East Carolina Medical School, explained it this way:
Cholestyramine is an anion exchange resin, basically a pharmaceutical grade Dowex-1 anion exchange resin. Its in the form of tiny plastic beads (polystyrene) with a quaternary amine group attached giving them a strong positive charge. They are non-digestible and will pass through the GI tract unaltered. Along the way, any negatively charged compound they come in contact with will bind to them and be carried out also. The main therapeutic use for this drug is to lower cholesterol by increasing turnover in the body. A major use of cholesterol by the body is in the production of bile acids which are made by the liver and secreted into the bile to help metabolize and absorb dietary fats. Normally the bile acids are recirculated and very little has to be resynthesized from cholesterol. When fed cholestyramine however, the negatively-charged bile acids stick to the beads and are carried out of the body. In order to replenish the lost bile acids, the liver has to use up cholesterol. The overall effect is that cholesterol levels will decrease in order to support the increased rate of de novo bile acid synthesis.
With all that in mind, it is possible for cholestyramine to also bind any other negatively charged compounds. I am not sure but it probably has highest affinity for negatively charged compounds (which will stick to the positive charges on the beads) which also have low water solubility (so that they have a higher affinity for the plastic part of the beads than they do for the water in the gastrointestinal tract).
He goes on to point out:
I did some more checking on Dr. Shoemaker's work. There may be some validity in his findings using cholestyramine to treat dinoflagellate poisoning since some of that material may show up in the GI tract. However, most of what is known about B. burgdorferi pathogenesis points to nerve damage caused by the host immune response to bacterial antigens other than direct toxins. Treating this mechanism using a drug that is restricted to the intestinal tract doesn't make sense at the obvious level. The results may be real but due to some other mechanism. Since he hasn't published anything at all in a scientifically reviewed journal, its hard to critically analyze his results.
This reasoning was echoed by Bristol-Myers Squibb whose spokeswoman said that cholestyramine stays in the GI tract and is not capable of crossing the blood brain barrier. Although it is legal for physicians to prescribe drugs for other than their intended use, reputable doctors will base it on controlled studies for that use. She was not aware of any studies of that kind.
It is my opinion that none of the claims on this website has held up to questioning, nor seem to be based in scientific research, testing or publications. The VCS test is not designed to give a direct diagnosis of a specific disease and does not function that way. Neurotoxin formation by Borrelia burgdorferi has yet to be documented other than identification of a protein that appeared to act as a neurotoxin. Treatment with Cholestryamine cannot, by its design, cleanse the body of toxins outside of the GI tract.
People with Lyme disease are desperate and at the mercy of many offers of cure. We need to be careful and we must educate ourselves, read about the disease, and make our decisions wisely.
Alan Kopit, consumer attorney, states that every year "billions of dollars are spent on unproven, fraudulently marketed health-related products, devices and treatments that pose a direct threat of both economic and physical harm to people already suffering from serious illness." If you believe you are the victim of such a fraud, you may contact the FTC at 1-877-FTC-HELP or go online at www.ftc.gov. You can also contact your State Attorneys General's office, State Department of Health, or local consumer group listed in your phone book. To contact the FDA click on www.fda.gov or phone 1-888-INFO-FDA.
I wish to thank many people who helped me tremendously in this undertaking: Tom Grier, MS., Dr. Art Ginsburg, Vision Scientist. Dr. Fred Berman, D.V.M., Ph.D., Toxicology Health Science University of Oregon. Dr. Sam T. Donta, Infectious Disease, Boston University. Dr. James Coleman, East Carolina University Medical School, Department of Health and Science, Aravinda de Silva, Ph. D. Of UNC-Chapel Hill, Dept. of Microbiology and Immunology, Dr. Thomas Bourne, Director of the Barnstable County Department of Environmental Health, MA , and many others who tirelessly answered my questions and gave careful explanations.
[This message has been edited by once bitten (edited 21 April 2004).]
UBBFriend: Email this page to someone!
Printer-friendly view of this topic