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Needing help & doctor's don't have the answer
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Author:  Cog1st [ Mon Feb 18, 2008 7:36 pm ]
Post subject:  Needing help & doctor's don't have the answer

All of us with tick borne diseases have been there. You don't feel well, you likely are in pain (but not always, maybe you have chronic infections, fatigue or "fibro" or possibly insomnia, anxiety or anyone or many of the 100 symptoms of tick borne disease) or maybe like me you hurt so bad you can't describe it. Lab results show nothing wrong, MRI's, CAT scans, blood tests and more. Md's can't figure out what is wrong. You could be misdiagnosed with anxiety, depression and many other "symptoms" of this disease, even the infamous "it is all in your head" diagnosis. (Please visit our main site for more information and Resources http://www.truthaboutlymedisease.com

There is so much to learn about Lyme disease and other bacteria ticks carry called co-infections. It is 100% up to you to become educated and seek help, I can help get you onto the correct path.

Lyme disease is a very complex disease that is not understood by the mainstream medical community, including, primary Md's, neurologist, Infectious Disease Md's and more. There are many controversial issues that surround these diseases, the unreliable testing, the illiteracy of mainstream Md's and the even the treatments.

Tick borne diseases are now the number one vector borne (insect borne) diseases in the United States and the fastest growing infectious diseases in the U.S. For comparison the CDC reported in 2006, 1,000 cases of West Nile Virus nationwide; 40,000 new cases of HIV/AIDS and 23,000 new cases of Lyme Disease BUT the CDC admits this number is incorrect due to unreliable testing and under reporting and that the actual infection rate is 10 times higher, making it approx., 230,000 new cases of Lyme nationwide each year.

Many of us with tick borne disease, including me, my husband, my son all have seen many doctors (between all 3 of us a total of at least 34 Md's before getting correctly diagnosed!) and had many tests, including several negative Lyme tests, 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 being correctly diagnosed. Some 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.

I was lucky (ha!) I only saw 12 Md's, my husband saw more, about 20, and my son, the first time at age 7 they never figured out what was wrong but put on IV antibiotics after seeing 3 Md's. When he relapsed 10 years later I knew immediately what was wrong but he saw 2 Md's and that was it. 34 Md's between the 3 of us. Some patients report years and years of finding an answer and having seen up to 40 Md's. YOUR PRIMARY MD'S ARE NOT SCHOOLED IN TICK BORNE DISEASE!! All 3 of us got what I call the 3 steps of Md illiteracy, "The look" (confusion) "The question" (Are you stressed?) "The diagnosis" (Anxiety, depression, CFS, Fibro or possible MS) NO, Wrong! Md's are trained in medical school to NEVER tell you they don't know what is wrong and if it doesn't "fit" to their text book training, then it becomes YOUR problem.

Lyme disease can lie dormant in your body for years and not cause any problems. Some remember a tick bite, most do not. If you ever remember a tick bite even if it was decades ago, you MUST consider Lyme seriously. Flea bites, mosquito bites, biting flies, congenitally, blood transfusions and even sexually, these disease can be passed.

I was diagnosed in 1996 with Fibro, but had manageable symptoms. I did have migraines over the years, vertigo and muscle aches that would come and go. It wasn't until early 2006, something very wrong caught my attention and caused excruciating pain. 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 the Lyme Disease ( I was unaware at the time of the shots that I had Lyme Disease) throughout my body. It is now believed I had "localized" Lyme Disease until the cortisone shot basically suppressed my immune system giving free reign to the bacteria, spreading it throughout my body making it active and widespread. Cortisone can be a terrible mix if you have Lyme. The shots I had also re-activated dormant viruses (100% of the population has dormant viruses) making my pain 100 times worse than the average Lyme-only patient. I also had tick borne co-infections. Viral co-infections are more common with Lyme than most realize and will cause horrendous pain especially if you have had any corticosteroid treatments, shots, pills, creams, nasal inhalers etc. Please understand this is my experience, not everyone will have the same experience or symptoms, that is why LD is so hard to diagnose, rarely if ever, will 2 of us ever have the same mix of symptoms.

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, I could not eat and lost 20 pounds within weeks, I felt like I was dying. My symptoms were extreme and excruciating but many others experience much less severe symptoms, each person is different and can experience different symptoms. Symptom's that "cannot be described" is also common with Lyme Disease. Lyme can come on slowly or with a bang.
Symptoms can wax and wane, some days I would feel as if I was getting better and then a day or two later, I would feel just horrible all over again and the pain was unmanageable. I learned later that waxing and waning is what Lyme "does". I ended up seeing about 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. There are many, in fact most are misdiagnosed with everything but Lyme disease, from 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. My full story can be read here, among many others: http://www.truthaboutlymedisease.com/ph ... um.php?f=5

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 learned spinal taps were even more unreliable!

The blood test (devised by the CDC) given at all conventional/commercial labs like Quest, hospital & others 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%. The CDC actually explains on their website and instructs doctors that Lyme is a "clinical diagnosis" and diagnosis should be based on symptoms, not their blood test results since it is not reliable. Unfortunately, doctors must not read this and do not follow this recommendation, instead they rely 100% on blood test results to diagnose Lyme disease. I realized (after extensive research) that you can have a negative blood test and still have Lyme disease.

When I look back I am very thankful that a mainstream Md didn't diagnose me with Lyme. I would have been under treated, never tested for co-infections (which can be deadly if left untreated) and my symptoms would not have resolved in the 2 - 4 weeks of antibiotics they allow. (They follow IDSA guidelines, which are trash!) Real information and treatment can be found at http://www.ILADS.org

Lyme bacteria is cork screw shaped much like syphilis and it quickly leaves the bloodstream once entering the body and prefers to go deeper where it can travel better in tissue, making finding it in a small tube of blood drawn even harder.

Md's also mistakenly rely on patient recollection of the actual tick bite or classic "bulls eye" rash that sometimes follows. But in most cases patients do not remember a bite 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 or scalp. Most Md's don't believe ticks live everywhere, yet Lyme has been found in all states and it is now believed that not just ticks carry Lyme but possibly all biting insects & can be transmitted sexually or through blood transfusions. This disease is much more common than any doctor would believe and some estimate 50% of the population have Lyme, either dormant or active and can be responsible for many ailments.

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. Even if they do 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, they 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 are infected with one or more the co-infections that need treatment. This is why it is imperative that your blood test be sent to a reputable lab that specializes in tick borne illness called 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.

You are fortunate to have found this website/forum, since these doctors are not easy to find and are virtually unknown to conventional/mainstream Md's, you may never find one. You can register and post at our forum if you have any questions or would like to find an LLMD.

Some conventional doctors/specialists may try to make you believe and may tell you they are "Lyme literate", but they likely are not, some may be "schooled" to some degree but they are not experts with this very complex disease, not even infectious disease Md's. The common misconception among these Md's is that Lyme is a very rare disease & if you have it, it is easily cured with a short course of antibiotics, neither is true. The truth is Lyme is the fastest growing infectious disease, surpassing AIDS in U.S.

If Lyme disease is not treated aggressively and until you are symptom-free, the symptoms may never abate or may resurface (relapse) days, weeks, months or even years later. Conventional Md's use outdated treatment protocols, if they treat you at all, which is rare it will not "cure" you. There is no "cure", diseases are managed. But Lyme does get better with long term antibiotic treatment, you can go into remission forever, that is all of our hope with this disease.

Unfortunately, there is no quick fix for treating Lyme disease and it requires high dose, long term combinations of antibiotic treatment, until the patient is symptom free plus an additional 2 months beyond that. The treatments with antibiotics in the majority of people will make you feel worse before you feel better. This increase or worsening of symptoms is called the jarisch herxheimer reaction "Herxing" can last for an unknown amount of time, it varies from person to person depending on many factors, i.e, how long you have been infected, if co-infections are involved, or if you have received corticosteroid treatment etc.. your treatments may be oral antibiotics, IM shots or IV.

Detoxing the body of the toxins, supplements to rebuild the immune system and probiotics for intestinal health are all necessary. There is so much more to learn.

LINKS OF INTEREST : (Copy and paste each link if they do not go to the website when you click on them) or click here for direct link:

More than 90 subjects, videos, book recommendations and much more: http://www.truthaboutlymedisease.com/ph ... um.php?f=6

My story and other Lyme patient stories, reliable resources and more can be found at the main website: http://www.truthaboutlymedisease.com

Basic info regarding Lyme and unreliable CDC test (read both pages): http://www.ilads.org/basic.html
Symptoms list: http://www.canlyme.com/patsymptoms.html

Lyme & co-infection symptoms:
http://www.anapsid.org/lyme/symptoms/tbi-symptoms.html

Lyme Disease Association: http://www.lymediseaseassociation.org/

Igenex Tick Borne Specialty lab: http://www.igenex.com

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