Lyme Disease. A Clear and Present Danger.

Why Aren't Doctors Educated Regarding Lyme?

It's so frustrating to see others having similar problems to those I've had with mysterious fluxuating symptoms and no answers to why they are so severely ill. Why aren't doctors educated regarding Lyme disease? The testing is so easy. The symptoms are very broad, yes. However, when you have a patient who needs help and there are no answers, why aren't you testing them?

Here is an example of an online medical help forum where the doctor didn't even think of the OBVIOUS...

Med Help Forum Link

"I got suddenly ill after a camping trip 2 and a half years ago, and have never felt the same since. My initial symtoms were flu like, but much worse, I couldn't eat for a week, and I couldn't get out of bed for at least a week... I couldn't go anywhere for 5 months...The "mono" never went away, but it got slightly better...I have such strange symptoms though, I dont know what to make of it! I am of doctors telling me its anxiety...I can barely get out of bed and am tired all the time, and also many symptoms I have could not possibly be due to anxiety."

If you look at the forum, it takes, not the doctor, but another forum member to mention Lyme. Who knows if this person ever actually received that comment to get them the help that they needed.

As this story from Michigan shows, doctors need to be made aware of the symptoms and testing for Lyme disease so that the illness doesn't become so debilitating for the patient by the time they are lucky enough to be diagnosed properly.

Link - Click Here

"He was an honor student and a star athlete. But when a mysterious illness suddenly sidelined a Roseville teenager, his parents were desperate for answers...By October, Cameron Holloway was too sick to go to school and too weak to even think about playing soccer...Amy Holloway (Mom) turned to the Internet for answers. She said she learned from a woman in Pennsylvania that it could be Lyme Disease...when she addressed the idea to doctors, they "seemed to laugh at me," said Amy Holloway... A first test was negative, but a second test confirmed Cameron Holloway had Lyme Disease...only 30 percent of people with the disease get a rash at all and it does not always look like a bulls-eye...Cameron Holloway is now being treated with antibiotics, but faces a long road to recovery. He is focused on building up his strength so he can return to school, his friends and hopefully play soccer...My knees get weak and they hurt. I have muscle pains. I get night sweats, numbness in my legs and it's been really hard," said Cameron Holloway...His parents are grateful their son is being treated, but wish his illness would have been diagnosed sooner."

Remember, if you get the symptoms as listed in my post Link Here from January 5, 2008, get the simple tests done for Lyme as listed in the same post. Additionally, remember that you are not alone. There are many of us that have suffered the symptoms that you have suffered and are here to help you through your recovery.

Lyme Disease. Welcome to the War Zone!

The Lyme disease war zone is described by Stephen Harrod Buhner, in his book called Healing Lyme, as "...a battle between people holding competing theories of Lyme disease and its treatment. The intensity of the conflict has regrettably reached almost religious levels amongst the different proponents. Caught in the crossfire are those with Lyme disease who are trying to understand what is happening to them, and to discover how best to deal with it. This is, in my opinion, reprehensible."

When pondering the thought of Lyme disease and how I was infected, most doctors would take me back in time, to memories of when I may have experienced a tick bite. Of course, having late stage Lyme, I cannot remember any such occassion. However, the physicians have never inquired regarding other causes of my transmitting the disease, nor have they inquired regarding my family and their health circumstances.

"In order to reduce the incidence of this disease, the education of health professionals, the public and politicians about Lyme, needs to be addressed."
--Wendy Leffel, M.D., "Healing Lyme"

Did you know that there are other possible means of transmiting Lyme disease?
Note: most of these are refuted through the CDC's site CDC Lyme Disease

*Human Breast Milk
*Tears
*Urine
*Semen
*also has been transmitted to babies in the womb
*mosquitos
*mites
*fleas
*biting flies
*other documented routes

The stereotype that Lyme is only spread through tick bites is one of the things that keeps the medical community from diagnosing and treating the growing, unreported, number of cases of Lyme disease..."...that a significant amount of reputable research is being ingnored by the mainstream medical community."

"Epidemiologic data suggest that the actual incidence of Lyme disease could be as much as 10 times higher than CDC data indicate. This probably is a result of a restrictive case definition from the CDC, inevitable misdiagnosis, and the fact that physicians tend to under report reportable diseases of all kinds."
--Jonathan Edlow, M.D., Harvard Medical School

These organisms (borrelia) are often present in such small numbers, and antibodies are so low in some of those infected that they don't show up on the standard blood tests for Lyme. Therefore, there is a desperate need for standard use of more sensitive tests to accurately diagnose the population. There may be many of those that have tested negative for the disease, who are actually infected.

"We desperately need practitioners on the frontlines who recognize and treat Lyme properly in the early, most curable stages and who take appropriately aggressive measures in later stages."
--Wendy Leffel, M.D., "Healing Lyme"

Other approaches to treatment need to be approached. Antibiotics are known as not tough enough in the fight against late-stage, or chronic Lyme disease. Even with this research and evidence, the CDC recommendations for treatment are exclusively built around antibiotics. See their recommendations for treatment here CDC treatments and links

"Science, though it often is, should never be the plaything of the powerful nor used to control the innocent for the accummulation of power and profit."
--Stephen Buhner, "Healing Lyme"



What treatments are the correct treatments?

What diagnostic data is the correct data to report?

What tools and tests should be used for diagnosis?

"Six points stand out to me after a rather long and intense examination of the existing material: (1) There is a lot of hysteria about Lyme disease. Everybody is pretty scared, most are not really sure what to do, including the physicians; (2) There are a lot more sick people than the statistics indicate; (3) Antibiotics are not nearly as effective as purported to be; (4) Clear, concise, unemotional information is hard to obtain; (5) Tests for Lyme disease are not very reliable; (6) Something very strange is going on in the field of Lyme disease and its treatment."
--Stephen Buhner, "Healing Lyme"

Why aren't patients, across the country, being tested for Lyme? Why is this such a hard diagnosis to obtain, when it is the correct diagnosis?

Sources:
www.cdc.gov
www.lymenet.org
www.lymediseaseassociation.org
Healing Lyme, by Stephen Harrod Buhner

Plausible Multiple Sclerosis? No Way!

As I stated in the beginning to this series of articles on Lyme Disease, I experienced at least 8 years of being critically and chronically ill. Doctors could not figure out what was causing the symptoms.

Oh yes, they would guess that it maybe Arthritis, Lymphoma, Fibromyalgia, and the last diagnosis...PLAUSIBLE Multiple Sclerosis. However, I was not going to take PLAUSIBLE as the diagnosis.

Once I went through the process as stated in my December 30, 2007 post, I finally received the real diagnosis...Lyme Disease. That was after spending family vacation at Disneyland, this past October, in a wheelchair. I am never going to spend vacation at Disneyland in a wheelchair again!

Lyme Disease creates many symptoms.

Here is one site that gives some of those symptoms.
www.anapsid.org link
Abnormal sensitivity to hot or cold
Allergies (nasal, other; new, increased or worsening)
Canker sores (frequent)
Chills and/or shakes when hungry (may occur instead of feeling hungry)
Cold hands and feet
Extreme fatigue after minimal exertion
Feeling hot or cold often
Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills
Hair loss (alopecia)
Herpes simplex or shingles rash
Increased susceptibility to infections
Low-grade fevers
Low blood pressure (below 110/70)
Low body temperature (below 97.5)
Lymph nodes painful, swollen (in neck; under arms)
Night sweats (not related to menopause or fever)
Orthostatic Intolerance (neurally mediated hypotension)
Reactive hypoglycemia and insulin resistance
Thirst, increased
Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature and body temperature; low body temperature (below 97.6 F / 36.4 C)
Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto's thyroiditis)



An even more impressive and comprehensive list of symptoms comes from the following site.
Canadian Lyme Disease Foundation Click Here For Link

"Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses."

"If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

"The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms."

"No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue."

Check this page link for a list of 75 symptoms that will help you to know if you should be tested for Lyme Disease.
Click Here For Page Link

I was asked about tests for Lyme Disease. The following relates the basics on the testing.

www.acponline.org link
"Blood Tests
Blood tests, also known as Lyme titers, cannot diagnose Lyme disease alone, but they are used to confirm a diagnosis. The most common blood test ordered for Lyme disease is the ELISA, with the western blot used as a follow-up test. The ELISA tests for antibodies, the body's defense system against infections; it does not test for the bacteria itself. These anti-Borrelia burgdorferi antibodies may take up to 2 to 6 weeks after infection to appear in the blood. Therefore, a blood test immediately following a tick bite will not be able to determine whether or not a person has been infected since not enough time has passed for antibodies to develop."

"Other bacterial infections and diseases may cause an ELISA to be positive when, in fact, the patient does not have Lyme disease. Therefore, the Western Blot, a more accurate test that can be used 6 to 12 weeks after infection, is recommended to confirm all positive or equivocal ELISA results. However, if symptoms and history strongly suggest Lyme disease, a doctor may begin treatment without blood test confirmation. Note that frequent testing without symptoms that suggest infection, even in endemic areas, increases the chance of a test result being positive when a person is not actually infected with Lyme disease."

I hope that this part in the series is helpful. I will continue to give further information in this series with blogs that include treatment options, statistics, links, etc.

If you suspect you may have Lyme Disease, don't wait for a doctor to offer to test you. Take it upon yourself to ask the doctor to order the tests. There is nothing wrong with taking control of your health care. It is your life. Choose to live it fully!

Sources:

www.anapsid.org - Melissa Kaplan's Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Melissa Kaplan, The Carousel Network, May/June 2003

www.canlyme.com - Canadian Lyme Disease Foundation

www.acponline.org - American College of Physicians

Lyme Disease Series (M.S., Parkinson's or...)

Look forward to more on Lyme Disease and related tests and links this week. I will include answers to questions and comments that I received from my posts and from my network sites as well. Thank you for your feedback. I feel as though I am receiving more from the post on Lyme Disease than I have given, thus far.