Most Canadian doctors are not familiar with Lyme disease and have not been trained to recognize it. The simple but cruel lesson I learned is that if doctors don’t look for something, they won’t find it.
I have had a very difficult time obtaining a diagnosis and treatment. Due to my own persistence and financial investment, after eight agonizing years I finally identified my health problem. Over 20 doctors in Ontario and Nova Scotia failed to diagnose my Lyme disease.
My pain became unbearable and I have had to take painkillers constantly for the last two years. In an effort to avoid addicting narcotics, I had one of my doctors arrange to obtain Ultram (tramadol hydrochloride) from the US. In my opinion, Health Canada should try to bring this drug to Canada because it might alleviate some of the drug problems and crime caused by narcotics. Ultram works for me, whereas drugs such as Tylenol 3 (with codeine) and even Vicodin do not touch my pain.
Before my Lyme diagnosis, I tried Dr. St. Amand’s Guaifenesin protocol for Fibromyalgia. It did not help me, but resulted in my reading the experiences of many chronically ill people on the internet. I learned a lot. In recent years, many good medical articles and studies have also been added to the internet. My study of these materials was what eventually led to proper testing and a Lyme diagnosis.
I actually knew enough to ask for a Lyme disease test when I first became critically ill. The results were negative. The test was an ELISA test, the official first screen for Lyme. A few years later I had another negative ELISA test. Finally, years later, I found out that the ELISA is not a reliable test for Lyme, especially late chronic Lyme. My recent test panel included, from the same test tube of plasma: negative ELISA, negative C6 Peptide ELISA, positive Western Blot. The ELISA test for Lyme should not be used, and especially not as a first screen. Current policy is that people don’t receive the more accurate Western Blot tests unless they have a positive ELISA result. Professor of Medicine and Director of the Lyme Disease Unit at Boston University Medical Center, Sam T. Donta writes that “over 75% of patients with chronic Lyme Disease are negative by ELISA, while positive by Western blot” (*see explanation from Donta 2002 below). The policy of relying on the ELISA as a first screen test must be changed because it is ruining people’s lives.
I received positive results for the Western Blot test, having had to send my blood to IGeneX Lab in California and pay for the tests myself. A doctor at the Environmental Health Centre in Fall River, Nova Scotia was at least willing to sign for them, even though he thought it was unlikely I had the disease. My results are positive even by strict CDC criteria (US Centre for Disease Control) and IGeneX lab is one of the leading labs in the world in the field of Lyme disease detection.
Our health system cannot be saving any money by using the less reliable ELISA test. I went to the doctor at least once a month for eight years due to wide-ranging symptoms, none of which were successfully resolved because no one addressed their cause. I have had repeated, extensive testing for rheumatic diseases. If I had been tested with the Western Blot test to begin with, we would have known immediately what was wrong and could have begun appropriate antibiotic treatment, saving a lot of unnecessary use of the health system. Not to mention the fact that I have been unable to work much in recent years and may end up reliant on the welfare system in my old age unless I can recover sufficiently from late-stage Lyme and work hard enough to make up for years of lost income (Lyme is harder to treat successfully the longer it persists). My family has also suffered from this disease. Having a mother who sometimes can’t get out of bed in the morning is hard on children.
Mainly I have joint, muscle, and connective tissue pain, but I have also had many other strange symptoms body-wide. At one point I received a diagnosis of IBS. Luckily I do not have many neurological symptoms, although in recent years I have had problems with disturbed sleep and even some short-term word recall.
I do not remember being bitten by a tick, although I grew up in Massachusetts, where Lyme is endemic, and I frequently visit my parents there. I also could have contracted the disease in Indiana or in Southern Ontario. I have not ever had the classic bulls-eye rash either. It is important that doctors be informed that patients without these hallmarks may still have Lyme disease. Dr. Sam Donta states1 “the rash occurs in fewer than 50% of patients with Lyme Disease, but the true incidence of Lyme Disease in the absence of a rash is unknown.” Furthermore, Donta points out that on a clinical basis, ‘chronic fatigue syndrome’ or ‘fibromyalgia’ cannot be readily distinguished from chronic Lyme Disease. Indeed, accumulating experience suggests that Lyme Disease may be a frequent cause of fibromyalgia or chronic fatigue.”
Unfortunately, doctors tend to assume that patients with multiple body-wide symptoms along with pain and/or fatigue have one of these “waste-basket-label” syndromes that they believe little can be done for. A common belief seems to be that patients with unidentified chronic pain have an oversensitive nervous system. My own frustrated doctors tried prescribing antidepressants and sending me to a psychiatrist, to no avail. I was found to be normal. Indeed, I had normal results for every test the doctors thought to try. For lack of proper guidance from the health care system, many cases of chronic infectious disease such as Lyme are being missed. Now that I know I have Lyme disease, we have found several tests for which I do have abnormal results.
One of these indicators is the D ratio. A California researcher, Dr. Trevor Marshall found that the ratio of 1,25 D to 25 D in one’s system is a good measure of Th1-type inflammation. This applies to many types of bacterial/immune diseases such as Rheumatoid Arthritis, Osteomyelitis, and at least some cases of Chronic Fatigue Syndrome, as well as Lyme. Dr. Marshall’s treatment protocol was first tested on Sarcoidosis patients, and has proven to be very effective. The protocol uses an ARB, Benicar, to blockade the cytokine cascade responsible for inflammation. This allows the patient’s own immune system to work properly again, and also potentiates the low-dose intermittent antibiotics used (mostly minocycline and zithromax).
My own 1,25 D value came back higher than the maximum Merck value for a healthy individual, and is higher than the value at which bone resorption starts occurring. This explains why my dentist was starting to see early bone loss in my jaw, and a bone density scan came out low normal. My D ratio, is very high. I started the Marshall Protocol in July 2004, and I am documenting my progress on line at http://www.marshallprotocol.com.
As for the possible coinfections of Lyme (other infections carried by ticks), I am counting on any such also being addressed by the Marshall Protocol. The one possible exception might be Babesia. Based on my thorough research, one of my doctors and I decided that we should test my blood for Babesia because it is a parasite and the one coinfection of Lyme that cannot be treated successfully by the same antibiotics as Lyme. Many Lyme specialists believe that it is necessary to clear Babesia from the system before Lyme can be successfully treated. While, I do not have overt symptoms of Babesia, it is possible to have a subclinical case. Experts disagree and it varies according to region, but a conservative estimate is that 20% of Lyme patients also have Babesia. My doctor wrote a script for a Babesia test, specifying that the blood be sent to IGeneX lab in California, as my Lyme test was. I would pay for the test itself. I had the blood taken at the QEII hospital in Halifax, but then an infectious disease specialist there overrode our carefully-thought-out action, plucked my blood out of the system and threw it away. So I have no Babesia result.
It worries me that access to accurate testing through our health system is being limited. I also need to get my son tested for Lyme, as there is a good possibility that he was born with it. He has had many neurological symptoms and some physical symptoms that could be explained by Lyme. But in a study by T. Gardner, in Infectious Diseases of the Fetus and Newborn Infant, 72% of newborns with tissue-verified Lyme disease did not produce enough antibodies to be seropositive for Lyme. So instead of a Western Blot, I am first trying to arrange a Lyme Dot Blot Assay (of the urine) for him, an antigen test only done by IGeneX.
I will update this report when I am further on the road to recovery, and when I have more news about my son’s results.