|
Home
|
|
Symptoms
|
|
Live Discussion
|
|
Diagnosis
|
|
Treatment
|
|
Area Support
|
|
Library
|
|
Research
|
|
Lymelinks
|
|
Contact
|
|
Pets & Lyme
|
|
DONATIONS
|
|
Drug Info
|
|
Medical Dictionary
|
|
Board of Directors
|
|
|
No Warranties or Representations
The data and information presented in this web site are presented in good faith and believed to be accurate. Any and all liability for the content or any omissions including any inaccuracies, errors, or misstatements in such data or information is expressly disclaimed. The web site is compiled for the sole purpose of informing community members of resources and information pertaining to Lyme Borreliosis Disease and its coinfections.
The Canadian Lyme Disease Foundation, Directors and members are not liable for any direct or indirect damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action arising out of or in connection with the use or performance of information available from this website.
Consult a qualified Lyme ( Borreliosis ) Disease literate doctor for medical advice if Lyme Disease is suspect.
|
My Lyme Story as of August 2004
Kate D., Halifax NS
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.
- Kate D.
1. www.canlyme.com/donta.html
| | | |
