Hoito: Vuosien aikana olen kokeillut lukuisia hoitomuotoja jotka eivät ole tuottaneet tulosta. Alussa käytin mm. yli kahden vuoden ajan erilaisia antibiootteja. Suurimman avun olen saanut Marshallin protokollasta ( www.AutoimmunityResearch.org tai www.marshallprotocol.com). Olen käyttänyt tätä hoitoa nyt yli 18 kuukauden ajan ja vointini on parempi kuin koskaan 25 sairausvuoden aikana. Nyt olen ensimmäistä kertaa toiveikas omasta ja muiden kroonisiin sairauksiin sairastuneiden puolesta (myös autoimmuunisairaudet).
I was always interested in science and biology, but never wanted to become a doctor because I thought dealing with illness all the time would be depressing. Little did I know that I would spend most of my adult life dealing with illness, as an unavoidable part of my own life.
I grew up in Southern California, in the Los Angeles area. I was valedictorian in high school and graduated cum laude with a Bachelor's in Biology from the University of California. I then moved to Tennesse to enter a Ph.D. program in Ecology. I have always loved nature and outdoor activities, which led me to do a lot of hiking in the mountains throughout college and graduate school. Other things I enjoyed included horseback riding and sailing, as well as a variety of other activities.
I was in graduate school in the early 1980s when I began to feel chronically tired. Over a period of several years I became increasingly ill and finally became disabled in 1986, a year after I barely managed to obtain my Ph.D. At my worst, I spent years where I could hardly be out of bed even 5% of the day and I lost so much weight due to diarrhea and poor digestion that I looked "skeletal." Speaking one complete sentence would exhaust me.
In recent years, however, I have learned a lot, and I have improved greatly, so I think I can offer some hope for others. I have also learned about a new treatment that I think will lead to my complete recovery, over time, called the Marshall Protocol.
I was bitten by a tick twice, in 1980 and in 1981, but it wasn?t until a flu-like infection, about 5 months after the second tick bite, that I began to feel really ill. No one suspected Lyme disease back then and so I went from doctor to doctor, getting no help.
It wasn?t until 2001 that I was finally diagnosed with Lyme disease based on Igenex Lab tests. Previously, I had failed to qualify as a "positive" on the Lyme test using the regular CDC criteria. Later, I also had a positive Babesia test. Before the Lyme diagnosis, it was assumed I had chronic fatigue syndrome, fibromyalgia and irritable bowel syndrome.
The main medication that helped me during the first few years was low dose doxepin for sleep. Later, reducing my food allergies/sensitivities helped me significantly. When I first worked on reducing my food sensitivities, I tried rotation diets, but they only made me worse. Later, I found out this is because I reacted to nearly everything, and by rotating the foods, I was continually going through withdrawal reactions, which are even more intense.
For me, it was better to eat a constant diet of my least allergenic foods (and only occasionally rotate off them for a few days). I had to go on a very restrictive diet, but by doing so, was able to gain back the weight I had lost and I was able to be out of bed a little more and not be quite as exhausted. Over the years, I learned more about the pulse test for food allergies/sensitivities. To do this test, you take your pulse at various times and use changes in your heart rate to help detect your hidden food sensitivities.
Dr. Arthur Coca, an eminent immunologist of the 1950s, originally developed the pulse test. There are two forms of the test, which I find particularly useful. One involves testing your pulse when sitting and comparing it to when you are standing. If the pulse goes up when you are standing, then you probably have some hidden food allergies/sensitivities. Mine used to go up 30 beats per minute. Now that I have altered my diet to reduce food reactions, my pulse stays the same when I stand up. The other test is the short cut pulse test to help identify reactive foods, drugs and supplements. It is described in an article on the web (to find it, Google Issue 5 CISRA food allergy).
Books on tape have been an invaluable aid to me over the years in helping me to cope with the illness. I was too tired to read or watch television much of the time and I missed being able to become absorbed in a book. I read many different types of books, including subjects like history, psychology, spirituality and many types of novels. I could feel like I was accomplishing something by choosing educational books (including medical books) and I could be distracted by the novels. It really made it easier when I found out that Braille Institute and Recording for the Blind & Dyslexic loan free books on tape to people who are too ill to read, if their doctor signs a form. The variety available through these sources is enormous.
Over the years I have tried dozens of treatments that did not work. When I found out I had Lyme disease, I was treated for more than two years with various combinations of high dose oral antibiotics without any benefit. I also took 3 weeks of Mepron for my Babesia, but I became sensitive to the Mepron, so it only made me worse (in fact it took months to excrete all of it and so I kept reacting to it).
Now, I will move onto the most hopeful part. The approach that has the greatest potential for being a long-term cure, in my view, is the Marshall Protocol (MP). This treatment arose from research on sarcoidosis, an inflammatory disease that often has serious effects on the lung and heart. Sarcoidosis has been found to be the result of infection with multiple species of bacteria (including Borrelia burgdorferi, the cause of Lyme) and the MP has reversed the disease in a significant number of cases.
The types of bacteria that cause sarcoidosis and other chronic inflammatory illnesses, like Lyme disease, have been elusive, because they are able to hide inside cells as cysts (also called cell wall deficient forms). In this form, they are able to avoid being killed and can manipulate the immune system for their own benefit.
These CWD/cyst forms infect immune cells, called macrophages, causing them to convert vitamin D into its active hormonal form (1,25D) at a high rate. People often think they are deficient in vitamin D, but they usually are not ? the precursor, 25D, has just been depleted by conversion to the active hormone, 1,25D. One should measure the active 1,25D form as well as the usually measured 25D form (Quest Lab seems to give more accurate results for 1,25D). Usually, the 1,25D will be normal or elevated even though the 25D form is low. However, even if the tests are normal, a trial of the Marshall Protocol is usually worthwhile, in my view. Vitamin D supplementation is found to actually worsen the illness in the long run, even though sometimes people feel better initially.
You can read much more about the new information on vitamin D and the theory and practical guidelines for the Marshall Protocol for free from the Autoimmunity Research Foundation (www.AutoimmunityResearch.org or www.marshallprotocol.com ).
The MP involves first reducing vitamin D, which when elevated, suppresses bacterial killing. Then, one begins a medication (Benicar, 40 mg, every 6 to 8 hours) to modulate the immune system. The last step is to introduce very low doses of a series of specially chosen antibiotics. Lower doses of antibiotics are needed because the Benicar and the lower vitamin D make the immune system much better able to kill the bacteria that are weakened by the antibiotics.
One must do the MP slowly and gradually because if one takes too much antibiotic at once, the bacterial die-off reaction (Jarisch-Herxheimer Reaction or "Herx") is too large and many symptoms are exacerbated severely. Care must be taken to thoroughly understand the MP guidelines, because too severe a Herx may even cause a potentially life-threatening reaction.
The Marshall Protocol should be studied in depth before it is attempted and one should really take advantage of the free help available online. It is a long-term treatment that one needs to stick with to get good results. Many people start receiving benefit quite soon, like myself, but others go through months of "Herxing" before improving much. I think it is very important to do the treatment at a slow and cautious pace and take breaks, because sometimes people try to hurry things and this may actually set them back several months.
Patients on the MP seem to be finding that they improve without treating the coinfections, like Babesia. It seems likely that once immune function is improved by killing the bacteria, the body can "handle" the other infections without additional drugs.
I have been on the Marshall Protocol for over 18 months, and I have had the largest and longest sustained improvement I have ever had in my 25 years of illness. Some patients who have been on the MP the longest say they have never felt better than they do now. I plan to continue on the MP until I am one of those.
So, now I have great hope for my future, the future of other Lyme disease sufferers and those with similar chronic inflammatory illnesses (including autoimmune diseases). Thinking of illness is no longer depressing to me, since I have begun experiencing the results of this breakthrough in understanding and treatment of many chronic diseases.