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 Post subject: Lyme Disease the multi system disease
PostPosted: Mon Feb 18, 2008 7:25 pm 
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Joined: Sun Feb 17, 2008 9:42 pm
Posts: 2809
Location: USA
There is so much to learn about Lyme disease and it can be overwhelming. The following is just the tip of the iceberg. But learn all you that you can, keep studying.

A good website and article can be read here about the complexities of this disease:

Lyme disease is a very complex multi-system disease that is not understood by most mainstream Md's across the U.S.A. It is first important to understand that there are many issues that surround this disease, the unreliable testing, the illiteracy of mainstream Md's and treatments and the possibly not so far fetched "conspiracy theories" that have been implied.

Many of us with LD, including me, have seen many doctors and had many tests, been misdiagnosed, before seeing an LLMD (Lyme Literate MD) and having blood tests sent to a private specialty lab that specializes in Tick Borne Illness, Igenex and finally being correctly diagnosed.

Many of us had been sick for months or years before being correctly diagnosed. Lyme Disease can manifest itself in many ways, since there are so many symptoms and 300 strains worldwide. It is rare to even find two people with identical symptoms.

Lyme Disease can lie dormant and "percolate" coming out one symptom at a time or explode with many symptoms all at once. Usually an explosion of symptoms is caused by a "trigger" such as a cortisone shot (an immunosuppressant) or chemical fumes, stress and more.

It wasn't until 2006 I experienced a sharp knife like shoulder blade pain that felt like it went straight through to my chest and a mainstream MD misdiagnosed me with muscle strain, gave me cortisone shots and unknowingly disseminated Lyme Disease and set 3 dormant viruses loose sending them throughout my body. Cortisone is very detrimental and in my case the shots suppressed my immune system giving free reign to the bacteria, spreading it throughout my body making it active and widespread.

Within weeks widespread symptoms appeared including neuro symptoms that included pins and needles, numbness, shooting, burning, stabbing pains and flu-like symptoms, I had 35+ symptoms in all. (Please see the main website below for my story under Author's Bio and other patient stories under the Stories link).

My symptoms were extreme and excruciating. But others can experience much less severe symptoms, each person is different. Symptoms can wax and wane as well. Rarely do 2 Lyme patients have the same set of symptoms. Here is a symptoms list and any combination is possible:

I ended up seeing 12 different doctors & some of the best specialists in California and had many, many tests, including MRI's, CAT scans, Ultra Sounds, blood tests, including 2 negative blood tests for Lyme disease. All other labs returned normal as well. A respected Neurologist suggested MS, my primary doctor diagnosed me with Anxiety, another MD diagnosed Fibromyalgia again. None of them were correct & when you think about it, none are "diagnoses" they were "symptoms".

Believe it or not I was one of the lucky ones. Many see up to 40 doctor's and I know of one person who saw 150 Md's. This proves without a doubt our medical community is completely illiterate and uneducated when it comes to Lyme Disease.

Many, in fact most, are misdiagnosed with everything but Lyme disease, from MS, ALS, Fibro, CFS, Lupus, Anxiety just to name a few, until finally finding direction to correct lab testing and Lyme literate Md's.

As I searched on line using my symptoms, Lyme Disease kept coming up. I learned that the blood test that doctors use was highly unreliable and can produce a false negative more times than not. I tested through mainstream Md's twice for Lyme, both times the results were negative.

The blood test (devised by the CDC) given at all conventional labs like Quest, hospitals and other labs, was not designed to diagnose Lyme disease, but instead in was designed to track a narrow band of patients for epidemic purposes and has a reliability rate of about 30%. Please click on this link to read more about the unreliable CDC tests, read both pages:

Unfortunately, doctors rely 100% on the unreliable blood test. I realized (after extensive research) that you can have a negative blood test and still have Lyme disease.

Md's will also rely on patient recollection of the actual tick bite or classic "bulls eye" rash that sometimes follows a bite. But in most cases patients do not remember a bite at all or a rash. Since many infected ticks are the size of the period at the end of this sentence, up to 85% of people do not recall a bite, which can occur in hidden areas such as the hairline, scalp, armpits or even genitals.

Most Md's don't believe ticks live everywhere in the U.S., but ticks know no boundaries & Lyme has been found in all 50 states. The most common and likely place to contract Lyme Disease is in your own backyard. I have read we are 10 times more likely to get LD than West Nile, but I believe the odds are much higher. The CDC currently admitted through reports on Fox news and other news stations that 20,000 people were reported with LD in 2006, but they believe the numbers are ten times higher and more likely 200,000 people went unreported or misdiagnosed.

The most important thing I can tell you right now & that I hope you understand, it is very important, illiteracy about Lyme disease runs rampant among conventional doctors and specialists, none are aware of the co-infections. You can run around for years from MD to MD and be told many different things. Even if they use their unreliable blood test for Lyme they never test for the co-infections. Ticks carry at least 4-5 other other bacteria that can also be transmitted through a bite called co-infections. Other bacteria include Babesia, Bartonella, Mycoplasma & Ehrlichiosis. It is imperative to be tested for Lyme and all the co-infections as each has their own symptoms and requires different treatment and you will not get well treating Lyme if you are also co-infected and up to 60% of us are co-infected.

This is why it is imperative that your blood test be sent to a reputable lab that specializes in tick borne illness, most LLMD's (Lyme literate Md's) use Igenex.

To be correctly diagnosed with Lyme disease (or to rule it out) and be tested for the co-infections you must see a Lyme literate doctor. These doctors are not easy to find and are virtually unknown to conventional/mainstream Md's.

The term "Lyme Literate MD" is a term the Lyme community uses and a mainstream MD would have no idea what you were talking about if you asked for a referral to one. This is why joining a forum and getting advice and help from patients is the most helpful thing you can do.

One way to find an LLMD is to join a support forum. Patients really are the experts and the most helpful & supportive for those who are new to Lyme disease or suspect they might have it. Online support forums have people from all over the country willing to help you. There is also a LLMD referral link under Resources at our forum index (link above) and one at our main website:

Some conventional doctors/specialists may try to make you believe and may tell you they are "Lyme literate", but be very aware most are not and use outdated protocols. This is a very complex disease and requires an LLMD to diagnose and treat correctly.

The common misconception among Md's is that Lyme is a very rare disease & if you have it, it is easily cured with a short course of antibiotics and neither is true.

Lyme is the fastest growing infectious disease next to (and is believed to have surpassed) AIDS in the United States and the number one vector borne disease (insect borne) in the U.S.

LD needs prompt and aggressive treatment and there is no quick fix for treating Lyme disease, especially if you have it for months or years, as many of us have. It is a disease and diseases can be managed, not cured. Treatment requires high dose, usually long term antibiotic, until the patient is symptom free plus an additional 2 months beyond that. The average chronic LD patient can take 1-5 years of treatment before symptoms abate. Current average time is 4.7 years.

I have known people to get well in as little as a few months and I have met people struggling for 24 years. Why some respond and other's don't is unknown. Mainstream Md's believe that if you do not respond within a month or so, you will be labeled with a diagnosis "Post Lyme Syndrome". They believe the bacteria dies immediately and if symptoms are still present, it from the damage done. LLMD's know this is not true, Lyme disease grows in cycles and only dies during those cycles. Much evidence from LLMD's has proven that if the patient is kept on antibiotics until symptom free the bacteria may either be eradicated (there is no test to prove this) or has gone dormant.

Learn all you can, consider the possibility with any multi-symptom, multi-system disorders. If you are in doubt of your primary doctors diagnosis, don't always believe or settle on everything you are told by Md's, follow your gut instincts and keep searching until you believe you have found the answer.

Best of health and well being.
Dana (more stories, info and resources)

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Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16

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