Lyme read her story
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I tried to copy and paste her letter about Lyme disease.
I see why it mimics fibro, but she doesn't mention tenderpoints.
Posted on 02/10/14, 09:14 am
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Can't even read her post with those pictures flashing.
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Wow, when I copied and pasted I just did the text, Sorry
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I’m glad you’ve found your way to this page..but i’m praying that you are just coming for information and not because you either have this disease or are fearful that you might as well.
Before you read any further, I want you all to know that this is MY story, my experience and I do not claim to be an expert, nor am I a doctor, but the informatin contained on this page is information that I have gathered off of the internet and have studied and read about..or experienced personally.. so please DO your own research to learn more. There are many unknowns about this disease and I’m only posting what I have learned and experienced.
If you live here in Tennessee, here is the website for a support group that I attend:
Website Link: www.tn-lyme.org
Telephone Contact: 615.294.4781 / Email Contact: Lymetn@comcast.net
MY SYMPTOMS: Many of these symptoms I had all at one time, others
showed up over time. The time frame for my symptoms was from December of 2007 to December 2008.. and I’m still feeling the residue of some of these symptoms now. Many of these have diminished, but I’m still dealing with alot of pain.
If you would like to see a more accurate symptoms questionnaire from a Lyme Literate Dr., please click here and print off. [COMING SOON]
My symptoms are below:
This is how it all started for me: Burning pain down left arm that threw me out of bed in the middle of the night, then burning on the back of the neck, burning pain down both arms, entire back burning, pelvic, groin, leg and foot pain everywhere. Hair Loss, memory loss, blurry vision, floaters on eyes, loss of appetite, rapid weight loss of over 60 pounds, BLOOD clots on lungs, dizziness, weird sensations of things crawling on my body, back, muscle twitches, stabbing pains, shortness of breath.. can’t climb a set of stairs, can't walk across the room, room spinning, neck pain, crackling neck, muscle and joint pain, chest pain, hip pain, hot spots on my body, severe arm and leg pain, anxiety, panic attacks, unusual depression, feeling as if you are losing your mind, heart palpitations, heart racing,sweating hands and feet, can’t sleep at night, then sleep too much, heartburn worse than ever before, gastro and bladder problems. Ringing ears, pain in ears, ear fullness, increased and decreased hearing at times. 4 trips to the ER thinking I was dying or having a heart attack, one trip, they found blood clots on my lungs. Can’t drive car because it hurts my arms too much, even washing hair hurts.
PROCEDURES DONE on my body: MRI of Cervical, Thoaracic and Lumbar Spine, Myleogram w/out sedation, CT Skan of Head, (2) CT’s Chest, Venus Doppler of legs, Heprin shots and Warfarin treatment for 45 days, Full body bone scan with radioactive dye, Sleep Study, EKG’s, EMG’s, one with electrodes, one with needles, 4 months of Physical Therapy, 2 months of Deep Tissue Release, Pelvic Ultrasound..the list goes on and on...and thousands of dollars spent.
DR.s: 2 Neurosurgeons, Orthopedic Surgeon, 2 Gynocologists, 9 Chiropractors, 2 Massage Theurapists, 2 Acupuncturists, Gastro Dr., 2 Neurologists, Rheumatologist, 3 Primary Care Dr.s, Endocrinologist, Pulmonologist,.. and finally a Lyme Literate Medical Doctor!
What is Lyme Disease?
Lyme Disease Information
Lyme disease is found in many countries worldwide, and has been reported in 49 states in the United States. While a "bulls-eye" rash is diagnostic for Lyme disease, the types of rashes vary greatly. Further, a significant number of patients do not recall any rash or tick-bite.
When the initial bacterial infection occurs after a tick bite, people may develop a rash and experience a flu-like illness. Often the rash is a red ring resembling a bulls-eye, but occasionally the rash may be red all the way across. The key is whether the rash enlarges or
gets bigger, not if it is a red ring or solid red. See photos @ http://www.lyme.org/gallery/gallery...
Symptoms can appear quickly or develop over time.[ii] Since Lyme is a multi-system disease, the list of symptoms is long, and it is common to see symptoms affecting multiple systems. Early in the illness Lyme disease can be confused with the flu, but as the disease progresses it can lead to cardiac, musculoskeletal, neurological, and/or other system involvement.
According to the International Lyme and Associated Diseases Society (ILADS), "Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurological conditions, as well as arthritis, CFS, Gulf war syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder and patients with various difficult-to-diagnose multi-system syndromes." Not only can Lyme disease be incorrectly diagnosed as other conditions, it can also occur concurrently with other conditions or be diagnosed incorrectly.
Lyme disease is treated with antibiotics, either orally or intravenously. Prompt and thorough treatment early in the illness is the most effective method for preventing a persistent, disabling condition. Patients with chronic Lyme disease often experience severe headaches, fatigue, pain, insomnia, and memory problems.
Chronic Lyme disease can render people completely disabled. There is no known cure for chronic Lyme disease, and its treatment is surrounded by much controversy. However, many patients find improvements when treated long term, either for Lyme disease bacterial infection and/or for the presence of co-infection.
Lyme disease (LD) is a multi-system bacterial infection caused by the spirochete Borrelia burgdoferi (Bb). The causative agent, Borrelia burgdorferi, is a type of spirochete. Spirochetes are long, thin, spiral-shaped bacteria. The bacterium is able to move around the body through the bloodstream and between tissue. It can also invade tissue, replicate, and leave the cell-destroying the cell as it emerges. Sometimes, as the bacterium emerges, the cell wall collapses around the bacterium, forming a "cloaking device". This action may aid the bacteria's ability to hide from the immune system response.[iii]
Immune difficulties are further complicated by the fact that spirochete can constantly keep changing genetic information expressed in its surface proteins. Just as viruses change from year to year, we know Lyme bacteria mutates. There are a number of organisms that can shift their surface protein in a matter of hours and that is how they evade detection and patients test negative. These organisms attach themselves to proteins and conceal themselves-- creating a cloaking mechanism that defies detection. This allows them to get where they want to go-- the nervous system. Once they are inside a cell, the immune system can't see them.
Pictures and slides showing bacteria transforming into cysts, spawning and starting the cycle again…http://www.lymeinfo.net/medical/LDA...
Borreliosis patients with a chronic infection most commonly have pain, tiredness, brain or thinking problems, blurry vision and neurological (nerve) problems. Borreliosis can cause any symptom and any disease. In addition to other symptoms, Borreliosis patients usually also have hypercoagulation (thrombophilia), endocrinopathies (hormone deficiencies), toxic metal elevations, deficiencies of essential amino acids and essential fatty acids, and also vitamin and mineral deficiencies. Borreliosis patients are usually low in iodine, have allergies, dead infected bone (osteonecrosis) in the jaw, have neurotransmitter deficiencies, and may have chemical sensitivities.
Pain is far and away the number one problem for those with Borreliosis. Not all patients have pain, but most do. Any part of the body can hurt, including the head, neck, eyes, ears, jaw, arms, hands, chest, abdomen, back, legs, feet, muscles and joints. This pain is sometimes worse than pain caused by surgery! Morphine may not help. I know for me personally, the strongest drugs such as Oxycodone did nothing but give me 20 minutes of relief and Morphine helped about 30 minutes each time I went to the emergency room..in which there were 4 times. I truly thought I was dying.
Tiredness or fatigue is the second most common symptom of Borreliosis. If you divided the pain symptoms into specific categories such as headache or joint pain, then fatigue would become the number one symptom. This tiredness has often been misdiagnosed as chronic fatigue syndrome. Fatigue can be so severe that the fatigue is described as complete exhaustion. Many are so tired that they lose their jobs and cannot help at home. They may also attempt a minor physical activity like walking to the mailbox or taking out the trash and become so tired that they have to go to bed. For me, even washing my hair was a task that would cost me physically each time..
my arms would be soo worn out from the scrubbing of my head, which is totally ridiculous..
The third most common symptom is brain or cognitive problems. Common symptoms or diseases include memory loss, decreased mental concentration, mood swings, irritability, depression, anxiety, panic disorder, manic-depressive illness (bipolar), obsessive-compulsive disorder (OCD), paranoia, schizophrenia, and “brain fog”. I remember going into Kroger and not remembering what I had come into the store to get and would totally forget where my car was many times. I now have to turn around and memorize where I parked by looking back and seeing the backwards vision of what I would see when I would come out of the store.
Blurry vision is the fourth most common symptom in borreliosis, but that is with combining all of the various pains together and all of the brain or thinking problems together. The bacteria can inflame any part of the eye (causing conjunctivitis, iritis, uveitis, retinitis and optic neuritis), so having blurry vision as a common symptom is not surprising. I experienced seeing floaters in my eyes many
years ago.. and thought that it was just film on my eyeball and never realized that these were floaters. It wasn’t until I was receiving treatment that the floaters became even more noticeable. Trying to see an email clearly became a huge problem. Very soon after this started, I needed to start an antibiotic eye-drop to kill the bacteria in the eyes. There are many reasons for floaters though, so don’t think that because you have this, that this is your problem.
Finally, there are the neurological symptoms. Neurological borreliosis is also known as neuroborreliosis. Patients may experience numbness, tingling, burning, twitching, jerking, and muscle weakness. In addition, they may have seizures, and multiple sclerosis, Parkinsons, amyotrophic lateral sclerosis (ALS or Lou Gehrig disease) encephalitis, meningitis, stroke and dementia. As one neurologist who specializes in borreliosis put it, “The chapter on neurological Lyme disease is still being written.
In addition to the above symptoms, there are “red flags.” These include memory loss, twitching around the eyes, Bell’s palsy (in which half of the face droops), tinnitus (which is ringing or buzzing in the ears), symptoms that affect one side of the body more than the other, symptoms that are worse when a patient first gets out of bed or that are worse in the winter.”[vii]
288,787 cases of Lyme disease have been reported to the Centers for Disease Control, 1980 - 2007 (06/16/07). There have been 3,294 cases of Lyme Disease Reported to the Centers for Disease Control for the year 2007 (06/16/07). Remember it is conservatively estimated that only one in 10 cases of Lyme disease is actually reported to the CDC
- so there may have been at least as many as 2.89 million cases of Lyme disease since 1980 and 32,940 cases in 2007.[viii]
Documentary and videos on Lyme Disease --
“Under Our Skin, an infectious film about microbes, money and medicine.
“One of the most controversial illnesses in the history of medicine, Lyme disease may be the fastest growing infectious disease in the United States. Yet each year thousands are misdiagnosed - many of them told that their symptoms are "all in their head." This upcoming documentary investigates the shocking human, medical, and political dimensions of Lyme disease, an emerging epidemic destroying countless numbers of lives. A case study of the dangers of the confluence of money and medicine, the film brings into focus a haunting picture of our healthcare system and its inability to cope with a biological terror under our skin.”
Video trailer on YouTube http://www.youtube.com/openeyepictures
Congress just watched a shorter version of "Under Our Skin" and what followed in their meeting afterwards with the Senators is riveting. If you don't look at another thing on your computer. Please, PLEASE listen and watch this stunning meeting at the House of Representatives, just a few days ago regarding Lyme Disease, the fight to save patients and cover up!!!
Click here to Read Pat Smith’s Update and watch the video.
Interview with musician Darryl Hall who openly discusses his battle with Lyme disease and tick-borne coinfections... http://www.lymeinfo.net/darylhallly...
Check out what he has to say about this as well by looking at the following links:
Further Lyme Info…
The Lyme Disease Foundation (LDF) is the premier nonprofit dedicated to finding solutions for tick-borne disorders. www.lyme.org
The Lyme Disease Network is a non-profit foundation dedicated to public education of the prevention and treatment of Lyme disease and other tick-borne illnesses. www.lymenet.org
Connie Strasheim’s Blog, Lyme Bytes – A site of encouragement, humor and information on Lyme disease and related syndromes. http://www.lymebytes.blogspot.com/
More Medical reports, slides, and information regarding Lyme can be found at … http://www.lymeinfo.net/lymefiles.h... http://www.lymediseaseassociation.o... http://textbookofbacteriology.net/L...
The information on Lyme disease contained on this Website is not intended to diagnose or treat any disease, but is for informational purposes only, and should not, in any way, be taken as medical advice. Please consult a licensed health care practitioner for all your health care needs.
[iii] Lyme Disease Foundation, www.lyme.org
After you’ve read everything, talk to your Dr. and I pray that you will have better luck than I did with physicians, many are not open to talking about Lyme Disease, because they say that it’s not in the area that you live, which is just ridiculous to me. What I have found through my experience is that many physicians who’ve been practicing for a long period of time, realize that we don’t know everything there is to know and that the human body is a mystery and we don’t know everything there is to know about every disease and how our world has changed and affected our bodies.
HOW TO GET TESTED?
Getting tested and getting started on treatment was crucial for me, as I felt like I was truly dying. There is only one testing facility that I know of so far that has the most accurate test, even though they say sometimes they get false positives as well. That’s why it’s so important to see a LLMD (Lyme Literate Medical Doctor) who will not only look at your test results, but also look at the symptoms that you are experiencing.
I-Genex, is the testing facility that was suggested by the top Neurologist at one of the most prestigious hospitals here in Nashville, TN After two different Lyme tests came back with
negatives.. It was this Dr.’s suggestion that I send off for the test since he knew that there are many false positives and negatives with catching this bacteria in a form where it’s not hiding.
You have to call yourself and order the testing kit, which is FREE and this is what I did.
Call I-Genex at 1-800-832-3200, and simply give them your name and address and you can order as many kits as you need to, if you are concerned about anyone else in your family as well. After you receive the testing kit, you will need to have your medical doctor sign off on ordering the blood work for the test and then send your check for the basic Western Blot test. I’ve learned that this is what most Lyme Dr.’s order, the test is expensive, but it’s the best investment that I’ve made in myself to get my health back.
Their website is: www.igenex.com
795 San Antonio Rd
Palo Alto, CA 94303
I pray that you will find your way back to better health. And remember, I am not a doctor and don’t take my word for anything.. i’m just trying to help you with information that I’ve learned....and so far this is what has worked for me. I know that there is alot here, but go through it carefully, and more than anything, please know that God is in control. Get a team of folks around you that will support you, stay in prayer and remain hopeful.
This disease is causing quite a stir that there is a request from Dr. Oz, on Oprah’s show to hear from those that are suffering and to tell their story. So be sure and go to this link as well if you have a story to tell. Below is what appears on a recent press release from “Turn The Corner” Foundation
For Immediate Release
On November 26, 2008, Dr. Oz, part of the Oprah and Friends Network, asked for people to email him to learn how extensive Lyme disease is in the US. Everyone is encouraged to pass this on through email lists so everyone can contact Dr. Oz. Click here to email your Lyme story to Dr. Oz.
You can listen to Dr. Oz's Lyme disease broadcast here. The show features Andy Abrahams Wilson, Producer/Director of Under Our Skin and Turn the Corner's 2008 recipient of the Vision of Hope Award. It also features Kathy Fowler, a 2008 Courage Award recipient.
During the broadcast, Dr. Oz also asks Lyme patients in the audience to share their own stories. With enough of a response from the Lyme community, we hope to pique the interest of The Oprah Show, where Dr. Oz is a regular guest contributor. So be sure to tune in and write in! And remember to thank Dr. Oz for his interest in Under Our Skin and Lyme disease.
Email your Lyme story to Dr. Oz
Share your comments on Oprah's Community Forum
Click here to listen to Dr. Oz's Lyme disease show
Donate to Turn the Corner
Visit the Turn the Corner website
Ok, everyone.. I hope you all stay well and if you are battling this disease, please know that you are not alone. We’re all in this together!
much love to you, lisa b.
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