This was the letter I sent out to people I knew last September when I thought I was going to stop reading about lyme and morgellons and just go back to regular life . . .
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Hello everybody:
I've been reading up on health stuff the past year. Nothing like getting really sick to get you suddenly interested in health issues. What I write below is just a summary of stuff I've learned. I see people and animals around me with symptoms that fit. But, I'm not hearing anything about this on the evening news.
Lyme disease is epidemic in the United States. The CDC had it's reporting system changed in the 90's so that reporting is reduced, discouraged, and the standards to trigger a report have been greatly narrowed - leaving people who actually have lyme disease falling outside of artificially narrow parameters and undiagnosed by doctors who don't understand that the standards have been rigged and who haven't been fully informed on all the symptoms. Doctors who do want to learn have been doing it on their own and becoming Lyme Literate Medical Doctors, LLMD's, and can be found through ILADS.
Remember when there was arguing over the unemployment figures back in the 70's and 80's? Depending on how the numbers were counted, unemployment figures could be presented as if things were getting better when they weren't. Well, Lyme disease is everywhere, but the "counting system" doesn't show it. Sometimes it is counted as another disease because the person is misdiagnosed, so while those disease numbers look like they are rising, the actual count of Lyme is not. Sometimes Lyme isn't diagnosed (counted) at all and people think someone died of a heart attack when it was Lyme - and could have been prevented.
Lyme disease costs health insurance providers a great deal of money. The less people diagnosed with Lyme disease, the more money health insurance providers save.
One thing I've learned this past year is that doctors who provide care to Lyme disease patients have been targeted and have had their medical licenses pulled or threatened. As a result, doctors in Lyme endemic areas will look right at a patient with a bull's-eye rash and not diagnose "Lyme disease."
But, many people do not get the telltale rash - and even if they do, they don't think anything of it and don't go to a doctor for a rash. Many people aren't aware they've been bitten by a tick, mite, flea, or biting fly that infected them with Lyme. Most doctors are unaware that Lyme disease diagnosis is primarily made by the symptoms the patients presents. They are unaware that even the CDC says that a clinical diagnosis has more weight than a laboratory test. Many doctors are unaware that many lab tests for Lyme will be negative for Lyme when the patient actually has Lyme, or the medical reasons for that, or how to read the lab test results so they tell the patient they are negative for Lyme when they are not. (Read threads about this at the FlashDiscussion on LymeNet, link at bottom)
The most accurate lab tests for Lyme are done by Igenex and Bowen.
Many people do not know that Lyme comes from more vectors than ticks. Or, that a tick can be as small as the commas you see here. Lyme is also transmitted via sex and from mother to child during pregnancy. Because lab animals who have been raised for generations in laboratory environments have had Lyme, it has been theorized that their food was a source. Because the spirochetes hide in blood cells, blood transfusions can be a source of infection. Aspertame has been linked in various articles, or events that affect the immune system and allow spirochetes to multiply.
Many people - and their doctors - believe that Lyme is not in their area. Where can Lyme be? Anywhere that a bird can fly. Lyme is everywhere in the United States and it is not being diagnosed. If a person goes to a doctor for aches and pains, and it is from Lyme, things can get much worse if the doctor prescribes steroids like Prednisone.
If you go to a doctor and say you have a cold, or the flu, does the doctor ask you who gave you the cold or flu? No. But if you suspect you've got Lyme, they ask if you've been bitten by a tick. Again, lyme is transmitted by a lot of other biting insects, not just a tick. And, most people don't remember being bit by an insect, nor do they actually see the insect. Whether or not you recall being bit, that has nothing to do with the diagnosis. Doctors should not dismiss your symptoms because you can't remember being bit.
What insects bite? Lice, scabies, bed bugs, mites - think about it. You don't have to have an outdoor lifestyle to get bit.
What triggered me writing this was reading the news article below. Since I got more tired and sick these past few years I've dropped out of activities. I've been doing health stuff and have been feeling better. I've started to talk to people around here again, and in chatting with people I've heard that people I know have been diagnosed with MS, Lupus, Chronic Fatigue, Fibromyalgia, and diseases that have to do with parts of the body that are often targeted by spirochetes.
Yet, I'm in an area that is not a "Lyme" area (Southern California.) A few months ago I took in two stray dogs that I had seen coming onto my property to drink water for a couple of weeks. Within a couple of weeks I had to take them to a vet, and they were put to sleep as both were obviously sick. Both had blood that the lab said was "full of babesia." Babesia is a lyme co-infection. In talking to others recently, their dogs have had - and died from - symptoms that match up with Lyme disease.
Of course, it is easy to dismiss what I am saying. Maybe I've been reading too much. I ask myself that often. Yet, again and again I'm finding the same symptoms popping up all around me. All it takes is asking around.
Please read the article below, and below that I've added some links to a list of symptoms to watch for and more information for those who want to learn more.
Please pass this email on to others - people die from Lyme disease. Animals too. And, I am baffled why this isn't in the evening news. This is more important than athetes and movie stars and their affairs. Learn the symptoms and ask around. Watch.
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"Spirochetes also can metamorphose to take the form of a cyst, which
develops when the spirochete has an adverse environment
(antibiotics). An "L" form is similar to a larva and "hatches" from
the cyst when things are safe for its existence, said Forester."
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www.thevictoriaadvocate.com/428/story/4089.htmlVictoria Advocate
Victoria TX
September 20, 2006
LIVING WITH LYME DISEASE
Life can quickly change with a simple tick bite
September 20, 2006 - Posted at 12:00 a.m.
BY TIM DELANEY
Like an assassin with disregard for its human target, it waits to
harm when the opportunity arises. This insidious creature is Lyme
disease and the most that is known about it is that - in Texas and
the region - it is carried by the Lone Star tick and the black-
legged tick.
The disease infiltrates bodies because little is known about how to
detect and terminate it.
There are potentially other sources: other ticks, such as the
American and brown dog tick; chiggers; fleas; and an array of
obscure biting insects, such as dust mites and sand flies.
A Lone Star or black-legged tick bit an active Victoria pre-teen two
years ago. At the time, she enjoyed hunting with her dad and playing
sports at school, and she excelled at her studies. Her peers
considered her happy and positive.
The world of Mercedes DeLaGarza, now 12, changed for the worse
because of the disease. Similar stories are numerous in Texas and
across the country.
Lyme disease is caused by tick spirochetes, corkscrew-shaped
microorganisms, known as Borrelia burgdorferi.
A tick transfers these spirochetes when its beak-like projections
burrow into a person. The spirochetes drill into white blood cells
where they hide. Healthy white blood cells do not recognize
compromised white blood cells as threats, so the immune system fails
to fight off the microorganisms.
As more is learned about Lyme disease, this is just one of three
ways spirochetes hide, said Dr. Jonathan Forester, a Lyme expert in
Louisiana.
Spirochetes also can metamorphose to take the form of a cyst, which
develops when the spirochete has an adverse environment
(antibiotics). An "L" form is similar to a larva and "hatches" from
the cyst when things are safe for its existence, said Forester.
Death from Lyme disease is unusual, but it can happen when
spirochetes target the heart.
Lyme was first identified in the United States during an outbreak of
arthritis-like symptoms in 1975 in Lyme, Old Lyme, and East Haddam,
Conn.
Since that time, medical research has been slow in coming, and
knowledge about the disease has not increased much.
AREA FAMILIES ENDURE LYME
Mercedes DeLaGarza of Victoria moves slowly across her mother's
kitchen and seats herself at the kitchen table. She scowls at her
mother's question, "How are you feeling?" Mercedes has her good days
and her bad days, usually the latter.
A New York doctor diagnosed Mercedes with Lyme disease after running
a gantlet of tests for other maladies because her earlier Lyme tests
came back negative. By the time she saw Dr. Charles Jones in New
York, a brain SPECT (single photon emission computerized tomography)
showed that Lyme had entered her brain.
Mercedes was 10 years old in late January 2004 when she went hunting
with her father near the Guadalupe River, where she sat in a deer
blind, she said. After that trip, she said the joints of her fingers
began to hurt.
"I thought maybe, 'I won't be able to do things like tennis.' I get
real tired real easy. In early February, I had a rash - didn't know
that it was caused by a tick. The rash was a perfect circle with
purple dots."
Angie DeLaGarza, Mercedes' mother, took her to a hematologist, a
psychologist and a neurologist. But in Mercedes' circle - friends,
fellow students, and teachers - relationships, perceptions and
tolerances declined.
"They called her 'lazy.' They told her, 'You're rude,'" her mother
said. "This is the meanest bacteria."
As time passed, before she was finally diagnosed with Lyme in May
2004, Mercedes endured immense physical and mental pain because of
other tests. She continues to take medication for pain associated
with the disease.
"Mercedes has gone through two spinal taps, steroid injections.
She's seen three neurologists in San Antonio and Victoria," her
mother said. "One doctor told her it was all in her head. They think
she is crazy, has MS and chronic fatigue. One doctor told me I had a
lemon for a child."
After the Lyme diagnosis, doctors were worried about every organ in
Mercedes' body, including her heart.
"It's too hard to deal with," Mercedes said.
Her mother added, "Insurance covers Lyme, but not if the tests come
back negative like they did at first. And medication is usually long-
term antibiotics - $1,300 a month. If they would catch this right
away and take care of it, insurance wouldn't be so bad. So what
makes them (doctors) think it's not in this area?"
She added, "If you're in an area they say Lyme disease doesn't
exist, they go with a diagnosis of Alzheimer's, fibromyalgia,
multiple sclerosis, lupus and chronic fatigue syndrome, and they'll
tell you it's all in your head."
A chronic condition, fibromyalgia's symptoms are similar to Lyme
disease and include fatigue, pain in all muscles, ligaments and
tendons, and multiple tender points where slight pressure causes
pain.
It's not always visible
About 63 miles north of Victoria in Schulenburg, Arthur and Lynn
Holle live in retirement.
He looks healthy as can be, but looks can be deceiving.
Holle said a tick bit him in April 2000. He then had the Lyme
signature rash.
He noted, "This was not a deer tick; this was a brown dog tick. A
day or two after that I had a red spot. It was a one-and-a-quarter-
inch diameter red spot. Two days after that, a pink ring formed
around it."
Many Lyme patients don't get the rash, said Dr. Jonathan Forester,
Louisiana-based Lyme specialist. In fact more do not than do.
Holle was given doxycycline, the standard antibiotic for infectious
insect bites.
He said, "When I really got sick, I really got sick. Tiredness and
sleepiness - a week after the rash showed up. Three months later I
woke up tired, fatigued, and the next morning it got worse."
Holle's doctor said it was the first and only case he had ever seen.
The family doctor decided to prescribe 30 days of the antibiotic
rocephin intravenously.
"On the 15th morning ... I had some energy. It lasted me for three-
and-a-half years before a gradual return of symptoms," Holle said.
When Holle first tested for Lyme, he tested negative.
His doctor also prescribed a blood oxygen test because he suspected
that Holle suffered from heart and lung problems. Holle demonstrated
a shortness of breath to merit the test.
"He tested negative for heart and lung problems. The shortness of
breath is a common Lyme symptom," his wife said.
His local doctor referred him to eight different specialists in
Houston. These specialists all told him he did not have Lyme. Holle
was examined first by a rheumatologist, who suspected he had lupus.
"They never were able to nail it down," Holle said. "They said I
needed to see an internist - somebody else and somebody else -
cardiologists, psychologists, internal medicine and
rheumatologists."
Holle said, "Eighteen months ago when I really had my relapse they
told me that without tests we really do feel like you have no Lyme
disease."
Finally, a North Carolina doctor, who the family doctor consulted
with, diagnosed Holle with chronic Lyme disease. He continues to
take antibiotics orally for management of the disease.
A vet's diagnosis
Back in Victoria County, Karen Brooks of Inez said she learned she
had Lyme in 1998. "My vet diagnosed me."
She said she did not get the signature rash but kept a diary of her
symptoms and gave the log to her doctor."
"When your immune system is down you can get Lyme easily. And that's
when I got it," she said.
"I kept going to all these doctors and was diagnosed with lupus,
Cushings and AIDS. They kept telling me everything is negative,"
Brooks said.
She said the veterinarian who recognized her symptoms was from
Dallas, but she had met him at a dog show in Laredo. She said this
vet identified Lyme symptoms in her immediately.
"I've got a sharp mind. Don't tell me there's nothing wrong," Brooks
said. "I found a doctor who I got to do something."
IgeneX lab in California ran the Lyme test for Brooks. The lab also
sells the Lyme test kits for $95. Patients can buy the tests and
request that a doctor use them. The doctors have to request a lab to
run the test.
"I went to nine doctors. I finally went to Dr. Patricia Salvato of
Houston. I got four months of 2 mg of rocephen and four months of
zithromax daily."
Brooks said she still has "brain fog, but nothing like before (the
medication)."
Recently, Mercedes' mother met Brooks and asked, "How can they take
care of an animal with Lyme but not a human being?"
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Link to a list of Symptoms that indicate Lyme:
www.canlyme.com/ A reference source and discussion group on Lyme:
www.lymenet.org/(if you wonder if a symptom you experience is experienced by people with Lyme, go to the Flash Discussion page, use the Search function and enter your symptom - any related threads will come up for you to read)
Basic Lyme Information and the best medical resource for true and accurate information about the treatment for Lyme - especially about the two standards of care:
www.ilads.org/basic.html Because antibiotic treatment sends the spirochetes into hiding in a cyst form, one alternative treatment is the salt/vit c regimen:
www.lymephotos.com/and an email discussion group about this:
health.groups.yahoo.com/group/lymestrategies/ One entertaining yet informative Lyme-related blog:
www.twistoflyme.blogspot.com/ I have more, but don't want to overwhelm anyone. Remember, if you are going to get tested for Lyme, read about the different tests first on the above websites. If your doctor is going to use a test other than Igenex or Bowen, you are wasting your time and money.
Good Luck and Good Health,