Lyme Disease

[gramvof14]

This is very serious and docs are not recognizing it,my sons neighbor had it for over a year she went through hell because the doc was testing her for everything and the lyme test came back neg thats the problem the test is not accurate.
http://www.lowellsun.com/ci_9454394?source=rss_viewed

[Roamer]

They even told the poor woman she had Lou Gehrig's Disease. That's terrible!

[gramvof14]

That Doc Luz Jacqueline Ruiz is a Neurologist and she is the Doc that my other DD goes to and she also has been having all the tests done on my DD and she is also saying she thinks my DD has fibroMyalgia well my DD goes tomorrow to see her and Carolyn my DD is bringing the article with her and she has a lot of questions to ask.I just talked to her and she has to go lay down because she is completely exhausted and in a lot of pain. This is very worrisome to me.They go away to Cal this friday I hope she can get some relief so she can enjoy herself.:1187603408.CR.Mothe

[Roamer]

Best of luck to your DIL, gram. I hope she gets to enjoy her vacation.

I got a PM from one of our members today telling me she was really feeling terrible. Sinus infection but she also got bit in the head by a tick. Her glands are swollen. She did go to the doctor, but I asked her to please come read your links, even though she said she's already looked up Lyme, just to be safe.

Very ironic that your thread appeared today, isn't it?

[gramvof14]

Best of luck to your DIL, gram. I hope she gets to enjoy her vacation.

I got a PM from one of our members today telling me she was really feeling terrible. Sinus infection but she also got bit in the head by a tick. Her glands are swollen. She did go to the doctor, but I asked her to please come read your links, even though she said she's already looked up Lyme, just to be safe.

Very ironic that your thread appeared today, isn't it?
I know, I hope that person reads it because those are some of the signs of it,thats what some of the signs along with a rash that my other DD had, it acts differant with each person thats what makes it differcult for them to diagnosis.:groan:

[LiveLaughLuv]

My DIL was diagnosed with Lyme Disease last year. Her symptoms were (besides a rash) flu-like plus a still neck, numbness on her stomach, aches, pains and a low grade fever.

You need a CDC doctor, a doctor who specializes in diseases, Try calling the Center for Disease Control and ask if there is a doctor in your area, or you call call your medical insurance company and ask the same.

I know they treated her with some powerful antibiotics that made her sick. It subsides for awhile, but comes back. She had gotten bitten by a tick while at Seven Flags Great Adventure Wild Safari. Hadn't realized it until her thigh was swollen and very red.

Good luck. I wish you all the best.

[Faith]

I found a tick on my head last Saturday night. It was a baby tick. The next day I noticed my lymph nodes were swollen and they hurt. I went to the doc this morning because I have a sinus infection and chest congestion. I told the doc about my tick bite, he looked at it and noticed himself that my lymph nodes were swollen. He said I'm glad you told me about the tick bite that changes the antibiotic I'm giving you. He gave me Doxycycline 100MG twice a day for 10 days.


I live in the woods. Every time I walk thru the woods I get a tick on me. However, this past weekend is the first time in a long time one has ever attached and actually bit me.

I've been bit by ticks many times in my life but the bite never caused a lymph node to swell up that I recall.

I spray deep woods off on me every time I go outside to work but I never spray my head/hair.

I will keep yall informed if mine turns into anything, please pray it doesn't.

Faith

[Pandabear]

Tick, tick, tick: How a single bite can change your life

I was one sick person when I met Dr. Murakami," says Brentwood Bay resident Marji Johns. "I couldn't believe the number of doctors I'd seen who ran lots of tests and couldn't tell me what was wrong. It was frustrating for them, too."

Johns, 45, was bitten by ticks twice in her life. First in the late 1970s, when a doctor immediately treated her for Lyme disease. Then she and her husband, Bob, were both bitten in 1996 when their dog brought ticks into their house.

"We both got terribly sick with horrible muscle pain, flu-like symptoms, and were tested for Lyme, but only Bob's came up positive. Mine was equivocal." Ironically, her husband got better and she grew worse.

Suddenly the formerly ultra-fit paleontologist, whose company Pacific Paleo-Quest does international consulting and who was used to lugging around backpacks full of rocks all day, could barely get out of bed in the morning: "I had what seemed like arthritis migrating around my body. I had hives, bowel upsets, memory loss. I even developed a stutter."

Then she heard about a general practitioner in Hope, of all places, who was treating Lyme patients and achieving amazing results.

Dr. Ernie Murakami is not a specialist in infectious diseases, but he consults with specialists, GPs and patients from Saltspring Island to Quebec on the subject of Lyme, and is a clinical associate professor at UBC's Medical School, where he teaches about the disease.

It has become a consuming passion -- one that turned him into a champion for patients whose symptoms have been dismissed or misdiagnosed by other doctors.

"I began to learn about it in detail after I developed two techniques for removing ticks from people and pets," he said during a recent visit to Victoria.

'They are very common around Hope and because they may be infected with Lyme, you have to be very careful removing them, so you don't inject the bacteria into you."

Murakami was invited to national and international medical conferences to describe his innovative method. He became fascinated with the disease, which was first identified in Lyme, Conn., in 1975 after a mysterious outbreak of an arthritis-like ailment among school children. The disease is common on the East Coast of the United States and has been steadily moving west.

B.C.'s first case was reported in 1988, and Murakami saw his first Lyme patient in 1994. But the number of people who have been proven infected here is small, and many physicians disagree with Murakami's belief that Lyme is prevalent on Vancouver Island and throughout B.C.

Victoria infectious diseases specialist Dr. Wayne Ghesquiere says he has yet to see a confirmed case of Lyme that was acquired in this province, although he has seen people who have contracted the disease elsewhere.

"Yet there isn't a week or a month that goes by that I don't get a query about Lyme or see someone with a constellation of diseases, chronic symptoms of fatigue, foggy brain ... who thinks they have it. It is very prevalent on the East Coast, not here."

Murakami, in contrast, believes many of the people who come to see him have Lyme. More than 200 have been referred to Murakami by doctors, or contacted him directly. He willingly puts them on an intense antibiotic regime, a treatment other physicians are reluctant to prescribe.

He makes a diagnosis based on dozens of symptoms, as well as test results, "because testing is notoriously poor."

The $300 test performed at the B.C. Centre for Disease Control in Vancouver has only 35- to 40-per-cent accuracy, he says. There are many false positives and false negatives, meaning a negative test cannot guarantee you don't have the disease, and a positive test does not guarantee that you do. Labs like IgeneX in Palo Alto, Calif., have greater success because they have 10 more years of experience and sensitivity, he says.

Diagnosis can sometimes be confirmed by a spinal tap, but that is invasive and risky, says the doctor, who runs a Lyme clinic in Vancouver every Wednesday, and comes to Saltspring and Vancouver Island every four to six weeks to see patients. A recently formed support group on the Island already has 15 members.

Although Marji Johns' test was "equivocal," the doctor looked at her symptoms and diagnosed Lyme. He prescribed a combination of four antibiotics, which she took for two years.

"I've spent $300 to $400 a month on antibiotics," says Johns. "But when you are totally disabled you don't have much choice... I am almost fully recovered."

Murakami predicts a major epidemic of vector-borne diseases -- those carried by insects such as West Nile and in the case of Lyme, by ticks -- due to global warming.

"My message in a nutshell is: We've got to diagnose this early and treat it immediately," says the doctor, who notes the survival rate of ticks used to be 10 per cent but in recent mild years has rocketed to 90. "People's lives can change with a single bite."

Clinical microbiologist Dr. Muhammad Morshed, head of zoonotic and emerging pathogens at the B.C. Centre for Disease Control, is also worried about Lyme. "Not because I'm expecting a huge number of cases, but because we always give it low priority," he says. "Physicians should be aware it exists and treat it accordingly."

He suspects it has been in B.C. for at least 40 or 50 years -- "we just didn't start looking for it until recently" -- which means many people may have been infected decades ago and misdiagnosed.

Morshed's surveillance teams started looking for Lyme bacteria between 1997 and 2001. They found infected ticks on Saltspring, Galiano, Bowen and Quadra islands, around Simon Fraser University, in Hope, White Rock, and all over Vancouver Island -- and he believes it has spread since then.

He stresses the disease is "very, very complex, like syphilis, with three stages." The first is easy to cure if diagnosed early and treated with enough antibiotics, but in its second and third phases it is a formidable enemy.

The bacteria can transform into a dormant phase that Murakami says can "actually hide in the tissue and then revive again later." The bacteria's genome also has elements that match human chromosomes, which means it is both hard to attack and difficult to identify in a test.

Dr. Murray Fyfe, a physician and epidemiologist at the centre, explains the infected ticks are found primarily in B.C.'s coastal region and since 1996 doctors have been required to report all confirmed cases to health authorities. Three cases were reported in 2001, 11 in 2000, three in 1999 and seven in 1998.

In the eastern U.S. there are thousands of new cases each year, says Fyfe, "but here in B.C. it is believed that only one species of tick (Ixodes pacificus) carries the disease and less than one per cent of that population has it. In New England up to 50 per cent of the ticks test positive."

Dr. Nick Harris, president of the IgeneX Inc. testing lab in Palo Alto, says if it weren't for AIDS, Lyme would likely be the No. 1 infectious disease in the U.S. and western Europe now. "In our little lab alone we had 350 positive Lyme tests last year, and in the whole country there were 18,000 officially recognized new cases. Our Centre for Disease Control says it is underreported by 10-fold, so that's 180,000 last year alone."

He says a tremendous number of patients with Lyme are mistakenly diagnosed with multiple sclerosis, fibromyalgia, or ALS.

"These people have seen 30 or 40 doctors until they finally luck-out and find one who knows about Lyme and sends them for testing," says Harris. "About half the testing we do is on people like that, who've had Lyme for years, and years, and years. They are completely demoralized and have just been thrown into a category like chronic fatigue because their doctors have no idea what is really wrong."

Lyme disease is frequently called "the great impostor" because it mimics other diseases such as MS, ALS, fibromyalgia, Alzheimer's, chronic fatigue, and bi-polar disorder.

Murakami tells the story of a Vancouver nurse who saw 20 doctors in her attempt to track down what was attacking her. She finally heard about Murakami, went to see him and was told she had Lyme. He prescribed three months of intravenous antibiotics, followed by oral ones in combination for five months. The woman, who at the height of her disease couldn't even drive her car -- "because she couldn't remember how to find her way around the city" -- is now not only driving again but back at work.

Patients treated for Lyme often feel worse before they get better. This is called the Jarisch-Herxheimer reaction and because it is uncommon in other diseases except syphilis, it is often used as a confirmation of diagnosis. Experts theorize it occurs when Lyme bacteria are killed off more quickly than the body's kidneys and liver can eliminate them.

Murakami explains the Lyme cycle begins when a tick, about the size of a sesame seed, picks up bacteria by feeding from an infected host such as a rodent. It stores the disease in its stomach, then transmits it to a deer, pet or human. The bite is not felt because the tick injects an anesthetic.

Within days of being bitten by a tick infected with Lyme, a person may develop a highly visible bull's-eye rash. But that does not always happen, especially if the tick was immature. Immediate symptoms are fever and general malaise, with the joint nearest the bite possibly becoming inflamed, he says.

Symptoms escalate rapidly. Within two weeks there can be night sweats, fatigue, and severe joint and muscle pain as the bacteria invades muscle tissue and tendons.

After a month the infection has migrated to every organ of the body and started to wreak havoc. The organism swims better in tissue than in blood, and if undetected and untreated for months or years can become embedded in the nervous system, heart, brain, liver, spleen, and joints, causing pain and even partial paralysis, not to mention other damage such as depression, says the general practitioner.

http://mypage.uniserve.com/~ron-anne/bcnews.htm

[gramvof14]

This is an update on my DD she is in the Critical Stages of Chronic Lyme Disease.She had a CD57 test which was 26 should be over 200 she had a Western Blot test which came back positive for Chronic Lyme.She has gone through hell with brain fog and memory loss and terrible pain, she has been in and out of the hospital, she wears a heart monitor because it is attacking her heart she has had a cognitive test which is border line.The doctor will be starting her on IV when the ins.Co ok's it, but the Ins. Co will only ok 28 days that is not enough it will come back with a vengence if not treated for at least 4 months. They think she has had this since she was about 18 or 19 she is 43. her girls have been tested and they also have it the youngest is the worst. This disease is of epedemic proportions and it is not being addressed.
http://www.youtube.com/watch?v=sxWgS0XLVqw&feature=user
My DD lives in MA. this dicision was passed in Conn.it should be passed in every state.
http://www.healthcentersofamerica.com/information.cfm?id=173
Gramv

[Roamer]

Gram, when I worked in the ER, there is a thing in this state called the Baker Act. People who need treatment and couldn't afford it have to be treated by hospitals.

It may be called something else in her state, but if she needs the IVs, there might be help for her. Could she qualify for Medicaid? Or even Medicare, since she's totally disabled.

My prayers are with your family.

[gramvof14]

Gram, when I worked in the ER, there is a thing in this state called the Baker Act. People who need treatment and couldn't afford it have to be treated by hospitals.

It may be called something else in her state, but if she needs the IVs, there might be help for her. Could she qualify for Medicaid? Or even Medicare, since she's totally disabled.

My prayers are with your family.
Thanks Roamer but she has ins. they just won't approve long term treatment even thou the Doctor feels she needs it thats whats so frustrating the Ins. Co. don't want to pay so they play God with your life.My DD went to the cardiologist today and now she has to be on Beta Blockers the heart arrhythmia is much to slow. I am so angry and frustrated and sad all kinds of emotions.We are still waiting for the Isn.Co. to approve the IV treatment and I am sure they will only allow her 28 days that is not enough. Then they will see the wrath of her mother I will go to the Attorney General of Ma.I will make a lot of noise, they will wish they never heard my name. Thanks again ((((hugs)))) gramv

[Roamer]

Insurance companies are hated more than defense attorneys, IMO.

Take them on, Gram. Demand to speak to a supervisor or someone who can help solve this, not just some underling who answers the phone. It has happened that they will change their mind. Maybe her doctor could even call them.

We pay premiums, then they deny possible life saving measures. Bullsh*t!!

ETA: Years back, when I didn't have insurance and needed daily IVs for whatever reason (can't remember), my doctor did them in his office. See if this is a possibility, too.

Give them hell, g/f!!! :kissyface4:

[gramvof14]

Insurance companies are hated more than defense attorneys, IMO.

Take them on, Gram. Demand to speak to a supervisor or someone who can help solve this, not just some underling who answers the phone. It has happened that they will change their mind. Maybe her doctor could even call them.

We pay premiums, then they deny possible life saving measures. Bullsh*t!!

ETA: Years back, when I didn't have insurance and needed daily IVs for whatever reason (can't remember), my doctor did them in his office. See if this is a possibility, too.

Give them hell, g/f!!! :kissyface4:
Thanks Roamer, the Doc called my DD this morning and they are going to start treatment on the 24 of this month, she still hasn't heard from the Ins. Co yet.Just pray that no permanent damage has been done. (((hugs))) gramv