Report from the 7th Annual AACFS Conference Madison, Wisconsin. Oct 7th, 2004 ‘Dr. Karen Vrchota’s Talk’ by Rich Von Konyenburg
This is my review of the fourth and final talk presented at the pre-AACFS session on Effective Therapies for Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM), sponsored by the Wisconsin CFS Association, and held at the Luther’s Blues restaurant in Madison, Wisconsin on October 7, 2004.
This talk was presented by Dr. Karen Vrchota, M.D.
Biographical Information – Dr. Vrchota (pronounced ver KO ta) currently conducts a private practice in Winona, Minnesota, called Integrated Health Care of Winona, specializing in the treatment of CFS and FM. (Her website is http://www.karenvrchota.com). She graduated from the University of Minnesota Medical School in 1985, completed her residency in family practice at Hennepin County Medical Center in 1988, and completed a fellowship in acupuncture and pain management there in 1990. She has been board certified in family medicine since 1988, and in holistic medicine since 2003. She initially worked at the Mayo Health Systems clinic in Wabasha, Minnesota as a family practice physician, and then in April, 2004 she started her current practice in Winona.
The Origins of Her Current Approach to CFS and FM
Dr. Vrchota began her talk by saying that she views herself as a foot soldier in the battle against these disorders, and that her main message to everyone was that the treatment approach that she has developed, based largely on the work of the previous speakers, CAN WORK.
Dr. Vrchota discussed the process she went through to evolve her current approach to treating these disorders. In her experience up to the spring of 2002, she had seen a lot of patients with a variety of disorders get better, but though she had seen many patients with CFS or FM, she had not been able to help a single one of them for even one day. Fundamentally, she had (and has) a strong desire to help her patients to become well. Thus inspired, she developed curiosity about how best to do this. The curiosity prompted her to use what she called the Sherlock Holmes approach: follow up on every lead, including listening to her patients, reading the books they referred her to, seeking out successful practitioners and networking with them, and generally learning about pathways to healing from whatever sources she could find. She integrated all these into her approach, and found that more patients were becoming well. This inspired her further, and she continued in this cycle.
Among the major influences she described have been the following: While working at the Wabasha Mayo Health Clinic, she attended a conference of the American Holistic Health Association, where Dr. Jacob Teitelbaum conducted a workshop in which he presented his holistic approach to treating CFS and FM. At the same conference she heard Dr. Steven Aung, M.D., speak on medical qigong and the mind-body-spirit connection. She also heard Lisa Everette, PharmD. and clinical nutritionist from O’Brien Pharmacy, discuss hormones, their coordination by the hypothalamus, and hormone disruptors, and read the book “Our Stolen Future,” by Theo Colborn.
She went on in 2002 and 2003 to take Dr. Teitelbaum’s beginning and advanced courses, and she also met Russ Jaffe, M.D., Ph.D, from whom she learned about the alkaline way diet, allergies, the vitamin C flush to assess current vitamin C needs, and the basics of detoxification. In 2003 she studied the teachings of Dr. Ritchie Shoemaker, M.D., including reading his book Desperation Medicine and finding out about cholestyramine treatment for neurotoxins.
Also in 2003 she attended the Wounded Warrior conference of the American Academy of Environmental Medicine, where she learned about the level of evidence of the infections involved in CFS, biological dentistry, and Immune System Activation of Coagulation, the latter explained by David Berg, M.S., of Hemex Labs. In May of 2004 she attended a Hemex conference in Phoenix, and learned about the International Association of Lyme and Associated Diseases, the Igenex Lab, and the Bowen Research Lab. She also met Carol Ann Ryser, M.D. and learned how she treats Lyme disease by rotating antibiotics.
As Dr. Vrchota was going through this learning process, she was also treating patients at the Mayo Wabasha clinic. She was given the go-ahead there to treat five patients using the treatment approach she was evolving, and four out of the five subsequently got well. Then, as she put it, “They started sending me the ‘fat-chart’ patients, saying, ‘Here, try this one!'” (The “fat-chart” patients were those who had seen many doctors and had had many tests run, without success.) She reports that these patients also became well, and then one thing led to another.
Results with Dr. Vrchota’s First Thirty-three CFS/FM Patients – Starting in July of 2002, after attending Dr. Teitelbaum’s workshop, she followed a total of 33 patients over a period of 18 months at the Mayo Wabasha clinic, using some of the forms developed by Dr. Teitelbaum as well as some she developed herself. There were 29 women and 4 men, ages 28 to 72, with an average age of 48. She kept track of patient progress using Visual Analog Scales (VAS) marked by the patients for energy, sleep, mental clarity, achiness, and overall feeling of wellbeing. These were also averaged together into a VAS representing all areas. At the beginning, the average rating for all the patients in all areas was 38. At the end of 18 months, this average was 80. There was a slump in the averages around 9 to 12 months. Dr. Vrchota interpreted this as being due to the fact that after patients experience considerable improvement, “They think they can go back to coffee and caramel rolls again, and then they say, ‘Well, maybe not.'” But this slump turned around, and at 18 months they were at the highest level of the entire treatment period. The same general pattern was seen in all five areas that were rated by the patients. It was interesting to note that the average VAS plot for the 29 women was much more dynamic than that for the 4 men. The plot for the men was essentially flat until it rose at the end of the period, not showing an initial rise or much of a slump, as were seen in the plot for the women.
The Elements of Her Approach
History forms – Dr. Vrchota starts with a new patient by using her modified initial form, which is considerably shorter than Dr. Teitelbaum’s long history form, because it was too much for patients to cope with on the first visit. Later she asks them to fill in a long history form, which is a modified version of his form, sixteen pages long and very comprehensive.
Some of the things included are biographical information; a description of the patient’s experience with their illness; two pages of lab test results; a symptoms checklist using the criteria for both CFIDS and FM; visual analog scales where patients can rate their energy, sleep, mental clarity, achiness, and overall sense of well-being; diet history; allergy history; past medical history; medications; nutritional supplements; health habits; other illnesses; surgeries; family history; social history; a comprehensive symptoms check-off list (organized by conditions they pertain to, such as adrenal symptoms, thyroid symptoms, sinusitis and other infections, etc.); a neurotoxins survey; a Beck inventory to look for depression; and a questionnaire developed by Dr. William Crook to look for medical history and symptoms specific to yeast infections.
She recommended to the patients in the audience that they fill out this form before they go to their physicians, and give it to them. This will be a big help to the physician, and it will make it possible for them to help the patient in a shorter time, with lower cost to the patient. This is especially important for those who have been sick for a long time.
Diet and nutrition – She gives guidance on diet. In particular, eliminating sugar and shortening. She recommends that patients drink green tea daily and avoid coffee, because it is so hormone-disruptive. She stated that coffee beans are sprayed five times after they are harvested and before they are processed, during the several steps of transport and storage that go on. She said that our southern neighbors use pesticides that are outlawed in this country. She said that we ship them these pesticides, and they send them back to us in our food.
She encourages her patients to eat organic, especially if they have problems with their hormones. Carbohydrates with high glycemic index should be eliminated from the diet. Many patients who have hypoglycemia eat only meat and vegetables. She believes that this can be healthy, but she also thinks that beans and lentils are good food. They release their energy slowly, and they have a “perfect” balance of carbohydrates and proteins. She said that if you use a couple of drops of Bean-O, which contains an enzyme that helps you digest them, you will not have problem with gas from beans. She recommends taking essential fatty acids, and her favorite is Nordic Naturals. She noted that Dr. Teitelbaum prefers Eskimo 3, and that both are good.
She routinely gives vitamin B12 shots to her patients. Dr. Teitelbaum gives them if the patient tests below 540. He noted that one can also do urine testing for methylmalonic acid. He said he thought it is totally reasonable to just give the shots to these patients without testing. Dr. Vrchota said that her experience is that nine out of ten of her patients say that “the day after they got the B12 shot it was like the curtain rose, the sun came out, their fingers stopped tingling, and their chemical sensitivities toned down.” Giving these shots carries a very low risk, because you won’t absorb more than you need, so she always does it.
For those taking cholestyramine for neurotoxins (see below) she recommends good fats–avocado, olive oil, omega-3 fish oils, vitamin E and multiple vitamins. She noted that cholestyramine will “suck the fat out of a person’s body.” If they are lean to begin with, this will give them dry skin, and their hair will fall out. That’s why ingesting these fats and fat-soluble vitamins is important.
Dr. Vrchota gives her patients digestive enzymes, and also betaine HCl if their symptoms suggest that they are low in stomach acid.
Immune System – To build the immune system, she uses ProBoost thymic protein A. It’s something that is put under the tongue for sublingual absorption. She said it helps to fight viruses and cancer, is expensive, but is very helpful.
Gut – She treats for systemic yeasts if the score on Dr. William Crook’s questionnaire is greater than 140. She heals the gut, using the treatments that are on Dr. Teitelbaum’s treatment protocol. She noted that Dr. Teitelbaum had reported finding that one in six patients have parasites, but she has sent stool samples from 20 patients to Great Smokies Diagnostic Lab for parasite analysis, and not one has come back positive, so she suspects that the populations that she and Dr. Teitelbaum are looking at are different.
Sleep – She always treats sleep. She noted that if a person says “Ahh” and you can’t see the back of their throat, there is a high risk that they have sleep apnea. Even very skinny people can have it. Based on her discussions with other doctors, she estimates that about half the CFS patients have sleep apnea. If this is treated, she finds that the fatigue situation is a lot better. She includes the sleep hygiene recommendations of Dr. Teitelbaum. She also teaches what she called “bladder training.” She explained this by saying that humans used to live in caves, and that since it was dangerous to go outside the cave at night to urinate, the hypothalamus developed the capability to secrete more antidiuretic hormone at night, to shut off the urine production. She instructs her patients to take advantage of this by “training their bladder, like it was a baby.” She tells them to say, “There, there, bladder, daytime is for peeing, night time is for sleeping, so roll over and go to sleep.” She reported that she has no patients who get up and urinate at night now, except the ones who have diabetes. She said that her patients are able to get over that part of the disorder, which “is huge! It’s huge!”
For sleep medicines, she uses what Dr. Teitelbaum talked about. She starts with his Revitalizing Sleep formula, and then uses trazadone, Klonopin and others if that doesn’t work.
Hormones – She treats thyroid, adrenals and sex hormones. She uses bio-identical hormones from Lisa Everette at O’Brien Pharmacy. She pointed out that not all supposedly bio-identical progesterones are the same. Both Lisa Everette and Dr. Vrchota have had personal experience with different ones, and Dr. Vrchota has settled on the same one that Lisa Everette uses, because she can tell the difference. USP progesterone is not as potent and not as clean as the one Lisa sells.
Allergy screening – At the beginning, she did not treat allergies, but she found that that they were responsible for the 20% who did not get better in her first group of patients. She now treats food allergies by beginning with the allergy elimination diet (see below). Later, she may do an ELISA-ACT test. But she said that it’s very important to believe what the patient tells you they are allergic to, because they know. She also pays attention to what time of year the patient feels worse. If it’s the spring or fall, she suspects some type of inhaled allergens. If it’s the winter, she suspects mold. If it’s the summer, it depends on whether it’s early, mid or late summer. She pays attention to their childhood history of allergies, and whether they have cravings for certain foods or food addictions. She noted that she herself turned out to have an allergy to corn, which she was not aware of. She loved corn, but when she stopped eating it, she dropped 70 pounds over the course of a year. Now, if she eats corn, she gets rheumatoid arthritis and her joints swell up. She noted that if a person reports an allergy to vitamin supplements, they are most likely allergic to citric acid, because it is a common preservative used in vitamin supplements.
Infections – She said she treats all the infections she understands. For Lyme disease, in addition to standard lab testing, she uses the tests from Igenex and from Bowen Research Lab. She noted that Bowen has not been able to identify any patients not infected with Lyme disease, and as a result, their testing is controversial and is not covered by insurance. Igenex, on the other hand, is CLIA certified, and many insurance companies will pay for their tests. She also uses Igenex tests for other tick-borne diseases.
Dr. Vrchota also uses the CFIDS panel from Medical Diagnostic Laboratories (www.mdl.com) , which includes PCR tests for Chlamydia subtype, Mycoplasma general, HHV-6 A and B, HHV-8, Cytomegalovirus, Epstein–Barr virus, and Herpes simplex virus. They also have a panel that includes ELISA tests in addition to the PCR tests.
Neurotoxins screening – Her approach to neurotoxins is based on Dr. Ritchie Shoemaker’s work. She asks them how bad these symptoms are. What are their risk factors for mold, for chicken pox, and for Pfiesteria? She noted that in her geographical area, many people live where the river is flooding, and they have black mold in their basements. Lyme disease is another source of neurotoxins. She noted that many patient come in already having taken the visual contrast sensitivity test, but if not, she has them take this test.
Depression – As noted above, she uses the Beck inventory to screen for depression. She said she never wants to have one of her patients commit suicide. She noted that the difference between CFS and depression is that in CFS you have no energy but you have a lot of interests. In depression, you have no interests.
Her “shingle” – Dr. Vrchota has developed a one-page form for use in 15-minute follow-up visits, which she calls her “shingle.” It includes the date, weight, height, age, temperature, blood pressure sitting and standing, heart rate, whether pulse is irregular, whether tobacco is being used, visual analog scales as above, a general question as to how the patient feels compared to the last visit, questions about allergies, sinuses, hormonal symptoms, thirst, libido, function at home, work and in social activities, diet, irritable bowel syndrome, arthralgias, mouth sores, restless legs, sleep apnea, recent infections, current fevers, medications currently being taken, treatment for neurotoxins, and tender point index.
She said that by using this shingle, she has been able to supply data to patients so that they are not having trouble getting paid by insurance companies, for example Blue Cross/Blue Shield. She advised the patients in the audience that if they filled this out and brought it to their doctors on follow-up visits, they would be so grateful, because there is so much that has to be covered in the short time available.
Fibromyalgia code tool – Dr. Vrchota described another form she has developed, which lists the ICD-9 diagnostic codes for the various disorders that show up most commonly in her CFS/FM patients, as well as the tests most commonly ordered, including those from specialty laboratories. She noted that to order lab tests, doctors must specify a code that designates their tentative diagnosis. They must look these up, and that can be time-consuming. She suggested that doctors will be more receptive to ordering tests if it is easier to get the codes, as supplied on this form. This form also specifies how to run the cortrosyn stimulation test.
Multiple food elimination diet – Dr. Vrchota has a very detailed, five-page explanation for how to do this diet. The first list on this write-up shows the foods that are allowed and forbidden initially. This list has categories for cereals, fruits, vegetables, meats, beverages, snacks and miscellaneous. She has eliminated barley and oatmeal in addition to wheat, corn and cereal mixtures. Rice is allowed, unless the person knows they are allergic to it.
After seven days, the person adds milk on day eight, then on day 9 they take out milk and add wheat, and on day 10 they take out wheat and add sugar, and so on, through several common allergy-producing foods. The whole thing takes 19 days. If the person knows they are allergic to one of these, they don’t try it in this test diet.
Before and after adding each of these foods, the patient observes for symptoms and notices how they feel, act, behave, and what their pulse, breathing, writing and drawing are like. These indicate whether there is an allergy to each of these foods.
Treating allergies – Dr. Vrchota has found that the Nambudripad Allergy Elimination Technique (NAET) is very powerful for eliminating allergies and sensitivities to foods and other sensitivities. The website for this is www.naet.com. This technique involves a combination of acupressure and applied kinesiology to eliminate allergies. She said she wishes there was someone in her area who practiced NAET, but that some of her patients have seen Dr. Bircher, a chiropractor in Eau Claire for insomnia, and have had wonderful results. He is quite busy, and has recently hired an M.D. to assist him, which is kind of unusual. ( Dr. Teitelbaum testified to the group that he personally underwent NAET for his allergy to ragweed about five years ago, and it knocked it out in about twenty minutes.)
She also mentioned the alkaline way diet, which she had learned about from Dr. Russ Jaffe. In this diet, the patient eats two alkaline-forming foods to one acid-forming food.
She mentioned the importance of eliminating molds from the home.
When she is unable to help a patient with allergies, she sends them to Dr. George Kroker in La Crosse. He is a world-famous allergist with a special interest in CFS and FM. He is booked about three months out. He uses sublingual immunotherapy. He sees a patient once, gives them drops, and might see them again in a year. The drops are inexpensive: six dollars worth may last three months, and they are very effective.
Sinusitus treatment – Dr. Vrchota said, “When I found out that everyone from Andrew Weil to the Mayo Clinic was recommending nasal irrigation for chronic sinusitis, I said, ‘Well, even though I hate water up my nose, maybe I should recommend it, and the patients really love it! It makes their sinusitis go away.” She said that another treatment that has made a huge difference is one that Dr. Teitelbaum developed with Cape Apothecary. It consists of Sporonox 0.2% to kill the fungus, xylitol to keep the staph from clinging to the mucous membranes, Bactroban, Beclamethasone and Nystatin. She said that as a result of using these treatments, she doesn’t have any patients with sinusitis anymore–not any.
Neurotoxins treatment – For treating neurotoxins, if found to be present using the visual contrast sensitivity test, she uses cholestyramine, as pioneered by Dr. Ritchie Shoemaker. It is very important to time this properly relative to meals, or it doesn’t work. She tells her patients to take one scoop in 8 ounces of water, preceded and followed by 8 ounces of purified water, exactly 30 minutes before a meal containing some fat and some protein. She tells them to take it four times a day, at least three hours apart.
At the beginning, her patients had terrible constipation. One person had to go to surgery because of constipation. He was a diabetic, and he had gotten sick from being in the central lakes region of Florida. He had gone from 160 pounds to 360 pounds. He got bowel obstruction from the cholestyramine. As a result of these constipation problems, Dr. Vrchota said she now combines cholestyramine with Fibersmart from http://www.Renewlife.com. She uses one-half to one scoop of this with the chemical-free cholestyramine from Hopkinson Drug. Patients usually take it for from two to twelve weeks, until they feel well or until the VCS test has either stabilized or returned to normal.
She said she gives them hints on how to avoid drug interactions, how to stay on schedule, what to do about intensification reactions. She said only about 30 % of her patients have intensification reactions, so she lets them try the cholestyramine first, and if they start to have hallucinations, if they’re pleasant ones, they can just continue, and if they’re unpleasant, then she gives them Actos 45 mg for ten days, and on the sixth day, she has them start the cholestyramine back up. She noted that one patient “had Van Gogh on the ceiling for three nights, and she thought that was alright.” Dr. Vrchota said that a lot of people taking Actos have uncomfortable feelings such as weight gain or bloating and they just feel “icky.” She has had them follow what Dr. Shoemaker calls the “no-amylose diet,” which involves no sweets or grains except corn. They eat above-the-ground vegetables and meat for that ten days, and that has helped them avoid problems.
Lyme disease treatment – Dr. Vrchota uses a variety of antibiotics to treat Borrellia and Babesia, cycling them to kill both the spirochete and cyst forms, following the advice she received from Dr. Carol Ann Ryser.
[Concluding comments from Rich: I was very impressed with Dr. Vrchota’s straightforwardness and overall approach. She clearly is motivated to help people become well. She has gone to considerable effort to find testing and treatment methods that work. She has a holistic approach and integrates conventional medical treatments with alternative ones. She has introduced a number of innovations in the procedures she uses in interacting with her patients, and appears to have very good rapport with them. She measures outcomes and reports very good results. For more information about Dr. Vrchota, consult her website at http://www.karenvrchota.com.]