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IN MY OPINION Challenging Quackwatch’s Position on Lyme Disease By Marjorie Tietjen The honest unvarnished truth concerning Lyme Disease, it’s co-infections and chronic illness will be exposed. Deception and fraud eventually bring about their own demise. This is simply a natural law of the universe. In the meantime, however, we need to be alert to the methods used to deceive concerning this particular medical cover up. Here is a link to the article I am challenging. http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html The folks at Quackwatch claim they have no financial and or political ties to government/corporations. Anyone can say this, but it would be difficult to prove. Actions, attitudes and results speak louder than words. “By their fruits ye shall know them.” From what I’ve read on this website, it appears that the writers are extremely one- sided in their views and seem inclined to attack and ridicule. They speak a lot about “approved studies” and base many of their conclusions on these studies, many of which are carried out by universities and government agencies which are funded by the drug companies. Of course, many drug companies directly carry out their own research studies. Doesn’t it seem very likely that their studies would be heavily biased? Just for the record, I don’t believe that there is a single study out there that can prove the nonexistence of chronic active Lyme disease, but there are studies out there that irrefutably prove that Lyme can still be present in the body after many months of antibiotic treatment. http://www.lymeinfo.net/lymefiles.html. The Greater Hartford Lyme Disease Support and Action Group has put up a US$10,000 reward to anyone who can prove that Lyme disease is always cured within 30 days of antibiotics and can never become actively chronic. This reward has been posted for over a year now and so far no one has responded. Many are beginning to observe that it is the private researchers, who have no such affiliations, who are being harassed and labeled as quacks, even when their work produces favorable results. Whatever happened to clinical observation and experience? Thousands of patients who have been labeled with various “autoimmune” diseases, have finally tested positive for Lyme, and were treated with long-term antibiotics, have either reclaimed much of their health, or at least have arrested their disease process. Not everyone improves however, as is also the case with many other accepted allopathic treatments. Reversing disability and sometimes death are the fruits of the Lyme doctors who are dedicated to their patients. What are the fruits of the mainstream medical system? All I see are symptomatic treatments for the plethora of symptoms caused by a single disease. Lyme disease can present with 40 or more symptoms. Every day we hear of a new drug advertised on T.V. to treat all those various symptoms. There is no long term profit in promoting a cure or a drug which would keep the disease process at bay. The Quackwatch article brought up two therapies - malaria therapy and ICHT (hyperthermia). These two treatments do seem to be more on the extreme end and I would advise a patient to do extensive research before undertaking these therapies. However, in the end, it should always be the patients’ prerogative as to what treatments the patients employ. I think most of us are old enough to make these decisions and if this is really a free country we would have total access to any treatment, drug or natural remedy. The next therapy which was mentioned was hyperbaric oxygen therapy (HBO). I have heard of many positive and encouraging experiences from people who have tried this therapy. However, frequently people have to go for follow-up sessions, when and if symptoms recur at a later time. And then, as with accepted allopathic treatment, sometimes for certain people there is no improvement. Everyone is different. The author mentioned an anecdote which seems to be for the purpose of suggesting that those who offer natural treatments are all shysters. The story mentioned that the director of a clinic, where a patient had her unsuccessful HBO treatment, would not refund her money. How many drug companies do you know of that refund our money when their drugs don’'t work for a particular patient ... or even causes serious side effects? HBO treatment may be fairly expensive but it is noninvasive and effective for many. Quackwatch brings up the fact that no studies have been implemented for the treatment of Lyme disease with HBO therapy. This implies that it is not even worth a try. If HBO therapy is so effective for other disorders then why hasn’t an “accepted” medical study been done in this area? I would think it would uncover very valuable information concerning the role of oxygen in the treating of many infectious diseases. Maybe this is why there are no studies. Again, cures do not result in profit. The use of colloidal silver was also frowned upon by the author of the Quackwatch article. From what I’ve learned, colloidal silver (CS) was used successfully for many purposes before modern antibiotics were ever invented. Perhaps the use of this substance is discouraged because drug companies would be unable to patent this natural product. It also can be easily made at home. I am acquainted with many patients who take CS on a regular basis and most have been helped immensely. It may or may not be a cure in every instance but it appears to arrest the disease process and many have experienced vast improvement. I have yet to see anyone turn gray ... which was the reason Quackwatch gave for not taking CS. The article states that the FDA is not aware of any substantial scientific evidence that supports the use of CS for diseases listed in the article. Well, maybe then it’s time to initiate some studies to investigate this apparently helpful substance. Another subject covered was the alleged overuse of IV antibiotics. The more prevalent use of oral antibiotics and the fact that they are much cheaper, was not discussed. Intravenous antibiotics are known, potentially, to have more severe side effects than oral antibiotics so it would be prudent to administer sufficient doses of orals whenever possible, before resorting to the IV. In some severe neurological cases, some doctors would, of course, want to try the IV antibiotics first. Using orals, whenever possible, before going the IV route is already the policy of most Lyme literate physicians. Many times higher doses of specific oral antibiotics will travel through the blood brain barrier with as much efficiency as the IV antibiotics if taken for a long enough period. All this is not to say that there are no unscrupulous IV companies out there, just as it would be ludicrous to believe there are no unscrupulous pharmaceutical companies foisting thousands of symptomatic treatments on those with chronic illness. Most of these drugs cause a vast range of symptoms directly attributed to the drugs themselves, which then calls for more symptomatic treatments to cover up the new symptoms. The more drugs are prescribed, the more money the drug companies rake in. I truly believe this is the primary reason why Lyme is such a political disease and why we are being denied the necessary antibiotics. Syphilis is a very close spirochetal cousin to Lyme disease. If you are not already familiar with the Tuskegee experiment, I would suggest researching into that government crime. Concerning my own case, I was not diagnosed until eight years in to the disease. I was told I had Chronic Fatigue Syndrome, which, of cours,e has no cure - only symptomatic treatments. This late diagnosis resulted in tertiary or late stage Lyme disease with much brain and nervous system involvement. At this point I was very grateful to have found a doctor who has had success in treating many chronic Lyme patients. This doctor tested me via the Western Blot. Although I was negative, this doctor knew, according to my symptoms, history and location, that I was most likely infected with borrelia burgdorferi (Bb), the causative agent of Lyme disease. I was treated with a high dose of doxycycline, which is known to penetrate the blood brain barrier at higher than normal doses. I did have herxheimer reactions which lessened with each month of treatment. There does appear to be a cyclic nature to the herxheimer and this may have to do with the life cycle of the Lyme bacteria and its pleomorphic nature. I did not even begin to show improvement till the end of the fourth month. After the four months some of the symptoms were gone and others were diminished in severity. At this point, I was retested using the Western Blot and I was positive. This happens to quite a few patients. It is believed that this phenomenon is due to the breaking up of the circulating immune complexes. In other words, those who are sickest with the disease are the most likely to test negative, until enough spirochetes are killed off, which then would make antibodies available for measurement. This may partly explain the difficult time the Columbia University study had in finding patients to meet their study entrance criteria. There are many reasons why you can test negative and still have Lyme disease. http://www.mentalhealthandillness.com/seronegativelymedisease.html After six years of intermittent treatment, I improved greatly, but it was not until I have been on antibiotics, consistently now for a year and a half, that I finally feel that I have my life back. It is important to realize that you also have to be treated holistically in order to receive substantial improvement. This can include lifestyle changes, changes in diet, certain herbal supplements, probiotics and other natural treatments. The immune system must be supported. I know from first hand experience that chronic active Lyme is real and that the longer one goes without treatment, the more difficult the microbe is to eradicate. I was headed for total disability but thanks to the few brave doctors out there who treat chronic Lyme, I am now leading an almost normal life. It’s an obvious example of cause and effect. Patients are sick with a chronic illness, they are treated with appropriate doses of antibiotics, for the needed length of time and, so, most people significantly improve. I really don’t see why there should be a controversy, unless, of course, the controversy is related to politics and profits. Now, as far as transmission of Lyme disease from the mother to the fetus is concerned, Quackwatchers tell us “there have been no documented cases of mother-child transmission and no cases of fetal injury associated with a lyme infection.” A recent state hearing in Connecticut featured a testimony which did document mother-child transmission. Three years prior to the hearing, Elise Brady-Moe was misdiagnosed with rheumatoid arthritis. About half a year later she tested positive for Lyme disease and was treated for seven months with antibiotics before she felt safe enough to conceive a child. She was 18 weeks pregnant when her baby died. The placenta and the fetus tested PCR positive for Lyme disease. Brady-Moe then went on another round of antibiotics for six months before conceiving her next child. It did not survive past nine weeks. She again requested a Lyme test and again the placenta was PCR positive for Lyme. Her problems went on for a bit more and you can view her whole testimony, along with the rest of the hearing proceedings at http://www.cslib.org/attygenl/health/0129lyme.pdf . Here you will find many other testimonies describing the life shattering effects of chronic Lyme disease. Does Quackwatch feel that all these people are lying and that testing records were falsified? Or are they simply ignorant of the facts? Under the heading of Political Aspects, the writer of the Quackwatch article goes on to ridicule those who form support groups for chronic Lyme sufferers. Evidently he is implying there is no such thing as chronic Lyme and that those who believe that they have Lyme, and form support groups, must be delusional. Chronic Lyme is not a belief system or a religion or a figment of the imagination. It is a devastating chronic progressive neurological disease, as is its cousin syphilis. Patients are demanding and certain doctors are prescribing long-term antibiotics because they work ... period! Syphilis, which is also a spirochete, also frequently requires open ended antibiotic treatment. Why would it be so surprising to find out that Lyme could also be congenitally and sexually transmitted, as syphilis is? Patients and knowledgeable physicians criticize those who block their treatments for an obvious reason; they want to get well. Clinical experience, testing and autopsies have proven that Lyme can be a chronic infection. Before the Smithkline Beecham Lyme vaccine ever hit the market, many informed people in the Lyme community were aware that 30% of vaccine recipients, with a specific genetic marker, would be at risk of developing an immune arthritis which could be worse than Lyme disease itself and would be incurable. SmithKline Beecham did not advise the public of this fact. When the vaccine came out it was being administered at drug stores, grocery stores, etc. To my knowledge, there were no doctors present or literature to explain this risk or to ask the recipients if they currently had Lyme disease, as this was another risk factor. I stood outside of grocery stores handing out information which fairly presented both sides of the controversy. I wanted people to have the information so they could intelligently decide for themselves whether or not to receive the vaccine. Two people, who worked at this grocery store, and saw me distributing material, told me they were in the vaccine trial study and they were now newly labeled with Fibromyalgia. I was present at a Lyme disease conference where SmithKline Beecham had sent a representative to speak to us. There were many doctors in the audience, along with patients and advocates. The whole presentation consisted of a slide show showing the different types of Lyme rashes. When the speaker was finished, a doctor stood up and said we were hoping you would share with us information concerning the reported adverse reactions of the vaccine. The SmithKline Beecham Rep. stated that there were no significant reactions observed or reported. A very loud, collective groan rose from the audience. We knew that to be a complete lie. Doctors were continually being faced with vaccine recipients who had either become much worse or they now had Lyme disease where they didn’t before. Of course, not everyone was adversely affected. We want to know why SmithKline Beecham did not warn the public that a significant number of people, (30% of the population) could contract a serious disease (Treatment Resistant Arthritis), from this vaccine. In front of me I have a copy of a Class Action Law Suit with Karen Cassidy as the plaintiff and SmithKline Beecham as the defendant. Cassidy was also representing others who were adversely affected by the vaccine. It is rather long, but I would like to include the following excerpt which summarizes the deception involved: “73. The Defendant (SmithKline Beecham) has made or caused to be made, through advertisements, directly or indirectly, explicitly or by implication, representations and omissions of fact which are material, false, deceptive and/or likely to mislead consumers, including but not limited to the following: 1. That the LYMErix vaccine was safe and effective for it's intended use. 2. That the LYMErix vaccine did not pose an increased risk of Treatment Resistant Lyme Arthritis to those vaccinees who are HLA - DR4+. 3. The Defendant had fully disclosed it’s knowledge of the heightened risks and incidence of adverse reactions, including but not limited to the heightened risk of Treatment Resistant Lyme Arthritis among HLA - DR4+ vaccinees; 4. That LYMErix was safe and effective to those individuals suffering from asymptomatic or early Lyme disease at the time of vaccination; and 5. That a single course of LYMErix vaccination would provide permanent or continuous protection against Lyme disease. 74. Contrary to Defendant’s representations: 1. LYMErix vaccine is neither safe nor effective for its intended use; 2. Vaccinees with HLA-DR4+ gene are at a significantly increased risk of developing Treatment Resistant Lyme Arthritis; 3. Defendant has suppressed and concealed material information developed by or otherwise known to them concerning the adverse health effects and/or incidence of adverse reactions associated with the vaccine, including but not limited to increased risk of Treatment Resistant Lyme Arthritis; 4. Vaccinees suffering from asymptomatic or early Lyme disease, at the time of vaccination, will suffer from a more progressive and enhanced Lyme disease than they would have absent the vaccine; 5. The LYMErix vaccination requires that, in order to maintain the advertised levels of protection against Lyme disease, vaccinees shall require booster shots with as-yet undetermined frequency, thereby exposing vaccinees who are HLA -DR4+, to heightened and ongoing risk and expense. 75. Defendant’s deceptive representations and actions and omissions of fact have been and are material, false, deceptive and /or likely to mislead consumers about the adverse health consequences of LYMErix and therefore constitute deceptive acts or practices.” Here is a link to an article discussing this vaccine fiasco http://www.sheller.com/Practice.asp?PracticeID=32 So, do you think that SmithKline Beecham withdrew its vaccine from the market due to simple lack of public interest, as SmithKline Beecham and Quackwatch states? Or is it more likely that so many people were harmed by the vaccine and that this was the cause for it being taken out of circulation? I rest my case. |