ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel
  • »
  • Health»
  • Diseases, Disorders & Conditions

Lyme Disease: Misdiagnosed, Underreported—and Epidemic!

Updated on June 11, 2017
donotfear profile image

Annette Sharp holds a BAAS in Behavioral Science from Texas A&M. She is a counselor and motivator with an empathetic heart.

Lyme Disease Facts

Lyme Disesease: Contracted in ALL States!

I want to stress the seriousness of this disease. According the the International Lyme & Associated Diseases Society (ILADS), Lyme Disease is the fastest growing infectious disease in the country. There is much controversy surrounding the origin, treatment, & testing for the illness. Borrelia burgdorferi, the scientific name for the bacteria, mimmicks other diseases such as Multuple Sclerosis, Lupus, Lou Gehrig's disease, Alzheimer's, Rheumatoid Arthritis, Fibromyalgia, & Chronic Fatique Syndrome.

The symptoms of of Lyme Disease vary. Most individuals experience one or more of the following: incapacitating fatigue, joint pain, muscle pain, fever, bulls-eye rash at tick bite (though less than 50% get the rash), odd nerve sensations, cognitive & mood disorders, memory loss, & depression.


" Lyme is one of the most serious epidemics of our time. Yet the opinions of 2% of the medical community are dominating the beliefs and practices of the mass majority of practicing Lyme physicians!"
" Lyme is one of the most serious epidemics of our time. Yet the opinions of 2% of the medical community are dominating the beliefs and practices of the mass majority of practicing Lyme physicians!" | Source

Do You Know These Lyme Facts?

The Center for Disease Control records about 20,000 to 30,000 confirmed Lyme cases per year. Only 10% of the cases that meet their "surveillance case definition" are actually reported. This means that as many as 300,000 or more new infections may occur each year.

The IDSA denies that Lyme bacteria can persist in the body after a short course (1-2 months) of antibiotic therapy.

ILADS doctors (Lyme Literate Medical Doctors) who disagree with short term treatment recommended by the IDSA may become targets of investigations by their state medical board for breaking standard treatment guidelines with the IDSA.

"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion." As stated by Connecticut Attorney-General Richard Blumenthal said in a 2008 news release.

Eight U.S. states -- Connecticut, Maryland, Massachusetts, Minnesota, New Jersey, New Hampshire, Pennsylvania and Rhode Island -- have passed laws to allow doctors to prescribe long-term antibiotics for the treatment of Lyme disease.

Lyme disease rashes can be mistaken for spider bites or skin infections.



Bullseye Rash

Rash can be much larger, spreading outward.
Rash can be much larger, spreading outward. | Source
Borrelia burgdorferi
Borrelia burgdorferi | Source

Facts from ILADS

Source:

International Lyme & Associated Diseases Society, PO Box 341461 Bethesda, Maryland 20827-1461

Disclaimer: The foregoing information is for educational purposes only. It is not intended to replace or supersede patient care by a healthcare provider. If an individual suspects the presence of a tick-borne illness, that individual should consult a healthcare provider who is familiar with the diagnosis and treatment of tick-borne diseases.

1. Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. (No one is immune to it).

2. Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. (It can infect multiple organs).

3. Less than half of patients with Lyme disease recall a tick bite. (Some studies suggest only 15%).

4. Fewer than 50% of patients with Lyme disease recall any rash. (It is not the most common dermatologic manifestation of early Lyme infection).

5. The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. (The surveillance criteria were never intended to be used as diagnostic criteria).

6. The ELISA screening test is unreliable. (The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol).

7. Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial Western Blot sampling. (The CDC eliminated from the Western Blot analysis the reading of bands 31 and 34 which are highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests).

8. When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. (Laboratories that use FDA approved kits (for instance, the Mardx Marblot®) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer).

9. There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide.

10. Testing for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick-transmitted organisms) should be performed.

11. A preponderance of evidence indicates that active ongoing spirochetal infection with or without other tick-borne coinfections is the cause of the persistent symptoms in chronic Lyme disease.

12. There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. (Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed).

13. Most cases of chronic Lyme disease require an extended course of antibiotic therapy to achieve symptomatic relief. (The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy).

14. Many patients with chronic Lyme disease require prolonged treatment until the patient is symptom-free. (There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme disease is cured).

15. Like syphilis in the 19th century, Lyme disease has been called the great imitator.

"Currently there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. False positives and false negatives often occur, though false negatives are far more common. In fact, some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results. "

*ILADS is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of tick"borne diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

Mystery Illness?

Lyme and it's co-infections of babesiosis, ehrlichiosis, bartonella, and Rocky Mountain Spotted Fever can affect the musculoskeletal system, neurological system, mental capabilities, psychological well-being, head, face, neck, eyes, vision, ears, digestive & excretory system, respiratory, circulatory system, reproduction, and general well-being of those who have it. In other words, Lyme and co-infections affect the complete central nervous system!

___________________

If Lyme Disease is not properly treated, one may become permanently disabled. Some people may not have a recurrence of the symptoms, but the majority suffer.

___________________

If you have the bulls eye rash, you have Lyme! Even if the test is negative (by CDC standards), a bulls eye rash is the sure indicator of definite infection.

_________________

Some medical researchers believe there is a possibility that Lyme & other tick-borne diseases can be sexually transmitted. There has never been any research to confirm or deny this information.

_____________________

In many cases, a person who is suffering from unsuspected Lyme disease is misdiagnosed as having something else other than Lyme.

_____________________

There is a theory that Lyme was developed as a biowarfare agent at Plum Island Animal Disease Center, NY in the 1950s.

If you would like more information, please refer to my personal account of the illness here on Hubpages AND VISIT THE LINKS AT THE END OF THE ARTICLE.

Comments

    0 of 8192 characters used
    Post Comment

    • donotfear profile image
      Author

      donotfear 5 months ago from The Boondocks

      Thank you for your response! Yes, I wrote this article a few years ago and have been lax in updating it. Your story is like so many. Recently, I've been getting more emails and phone calls from individuals that cannot get a diagnosis. Very sad situation. I maintain some websites and Facebook pages as well. www.arklatexlyme.com.

    • dlegendre profile image

      Diane Blanchette 5 months ago from New Hampshire

      This article may have been written years ago but it is absolutely correct! Misdiagnosed or untreated Lyme Disease can affect every body system. and I mean EVERY. I have been sick for years. Since multiple medical doctors did not think out of the box my condition was left untreated and became worse every year. They couldn't figure it out so I was diagnosed with a mental disorder! Then, one holistic nurse practitioner took one look at me (I was extremely ill by that point) and knew. I was in such bad condition she started aggressive treatment right away. Very aggressive treatment. Along with repairing my digestive tract and improving my immune system. When I first saw her I presented with bloodshot eyes, white drainage in my eyes, open wounds all over my face that were there for almost a year and would not dry up or heal, my chin would suddenly swell up turn red and itchy with large bumps, i had mysterious bumps and lumps all over my neck , sores and large bumps all over my chest, unrelenting itchy skin everywhere. wheezing in my lungs, coughing constantly, sinuses totally clogged, swollen glands, constant headache, joint pain, random joint swelling and redness, itching feeling inside my joints, heart rate of over 120 at rest, high blood pressure that no doctor could get under control, leg and ankle swelling, then it affected my brain. I couldn't think. It was difficult to organize in my head or do math. I stopped reading books...I couldn't read and the info or story I was trying to read couldn't sink in my head so I would reread one sentence 5 times. I was totally always fatigued as if I was 80 yrs old. My speech was not as articulate. Gosh, my workplace sent me to the ER twice, not by my request but theirs! How long have I had Lyme that went undiagnosed? Years, it started years ago. Much damage has been done. I have been treated aggressively for barely 6 months now.....already my heart rate is in the 70 to 80 range. My blood pressure just recently responded and is considered normal, my heart stopped pounding, I am no longer dizzy and short of breath. no wheezing, and just this past month I can breathe out of my nose, headaches reduced, only occasional joint redness and swelling and pain and I am on my 6th reading book in a series. So please, don't let doctors convince you that it is only in your head. Continue to seek out healthcare professionals until someone truly listens and is willing to treat you.

    • donotfear profile image
      Author

      donotfear 2 years ago from The Boondocks

      Where were the test results from? What lab? They are generally negative, even mine was because they are so flawed. Ask to see the test yourself. How many bands were negative? All of them? If you had any positive bands on the test, it's significant.

    • Susan Trump profile image

      Susan Trump 2 years ago from San Diego, California

      Negative. Good to finally know.

    • donotfear profile image
      Author

      donotfear 2 years ago from The Boondocks

      Wow! Let us know how it turns out!

    • profile image

      Susan Trump 2 years ago

      Waiting for Lyme test results in 15 minutes. It's no joke. I write about those nebulous symptoms mimicking new designer diseases owned by big pharma. Thanks for writing.

    • Susan Trump profile image

      Susan Trump 2 years ago from San Diego, California

      It can be cured by multiple rounds of medication, however you need an expert. Most doctors, even today, will do one round and believe all is well.

    • profile image

      kelsey 2 years ago

      This sounds like a serious disease that you don't want to leave left a lone. If i ever even thought I had Lyme disease I would go get checked out right away. I wonder how it is treated or cured. http://www.ftwashingtonvet.com/services.aspx

    • Susan Trump profile image

      Susan Trump 2 years ago from San Diego, California

      Interesting story. I went into the library recently and a book jumped out in front of me. It was on Lyme's Disease and seemingly unrelated to me but I took it anyway. It taught me that Lyme's has symptoms that mimic other conditions which are Not Lyme's. This causes more misdiagnosis. Further it explained that the recovery is cyclical and unpredictable, needing on-going treatment.

      Not one week later I met a woman at a health clinic who was sadly suffering. Her daughter explained that she had just gotten over Lyme's Disease but is still not well. She had no idea her Lyme's was still present. Armed with the new information she was able to make an appointment with the doctor who wrote the book that jumped off the library shelf at me. It turns out the doctor was from the same area of New York as she lived.

      Ah, the universe.

    • donotfear profile image
      Author

      donotfear 2 years ago from The Boondocks

      Thank you Susan Trump!

    • Susan Trump profile image

      Susan Trump 2 years ago from San Diego, California

      Keep telling the story. People have to understand misdiagnosis. My area is lead poisoning...symptoms are similar. I'm on hub to bring awareness to health issues.

    • donotfear profile image
      Author

      donotfear 3 years ago from The Boondocks

      Rose, I hear you! Find a support group there are many. Look on Facebook, Lymie 24-7 hot line/

    • profile image

      Rose 3 years ago

      A horrific living nightmare since this began June 17, 2005. Effects all areas of my body and truly don't know how I have lasted so long.

      Slow debilitating torment, so frustrating and extremely difficult to get through each day. I have been unable to receive medical treatment and due to the emotional and verbal abuse received from the doctors when so desperate, was shocking and damaging. Not sure which was worse, the disease or the shocking behavior received from medical doctors.

    • donotfear profile image
      Author

      donotfear 3 years ago from The Boondocks

      Char, I totally understand! I just got back from the Mayday Project protest at the IDSA headquarters and it was unreal. So so many, but we are making some progress in raising awareness. Don't stop talking and educating others so that we can warn them. Thanks for sharing.....be blessed.

    • profile image

      Char Michigan 3 years ago

      I hit the ground in 2003, misdiagnosed with MS, multiple IV steroids left me incapacitated. Diagnosed myself with Lyme in 2007, saw the one LLMD in Michigan, who saved my life. However, I am not really living. No, just existing. My eldest daughter has also been in treatment for years, my husband and 2 other kids are Positive for Lyme as well. So, I wish I could have shown more on your state count. There are so many here in Michigan - we are just too sick to be active. Glad you are, thx

    • donotfear profile image
      Author

      donotfear 3 years ago from The Boondocks

      lymer: Thank goodness you let me know this!! I must have left it off when I was creating the survey. I will add it in a new box. Thank you for bringing it to my attention!

    • profile image

      lymer 3 years ago

      Michigan is not on your list, why. Have lyme got it in Michigan!

    • donotfear profile image
      Author

      donotfear 5 years ago from The Boondocks

      trish, I hope you seek the help of a Lyme literate medical doctor. Please go to www.lymediseaseassociation.org and find the 'Doctor Referral Link'.

    • profile image

      trish 5 years ago

      i got lyme in upper MI.(MI isn't a choice) i live in indiana... i tested positive in june of 2009. i feel horriable today. the doctor keeps taking blood and running test for thyroid and mono.. and ?? its in my bones and nerves.. it feels like lyme again.. he dosent beleive me. :( i hope you feel better fast.

    • ncyprus profile image

      ncyprus 5 years ago from hub pages

      very creative and informative stuff your good job!

    • donotfear profile image
      Author

      donotfear 6 years ago from The Boondocks

      Wow, Lyme Literate. I didn't know you were here on Hubpages!!! Thanks...I'll check out your hubs too!

    • LymeLiterate profile image

      LymeLiterate 6 years ago from Pennsylvania

      Awesome- I voted you up! If you haven't seen any of my hubs or my book, check it out- The Object of My Infection. I published it back in 2009. I had both Neuro Lyme and bartonella. Keep up the good work and the awareness!

    • True Cures profile image

      True Cures 7 years ago from Payette Idaho

      donotfear,

      I commented on your other hub but I have to comment here as well. It isn't about finding a cure for Lyme Disease it is about using cures for Lyme Disease that can't be patented.

      I'm asking people with lyme to sign a petition to get medicine to investigate cures for not only lyme but all diseases, the catch is the cures cannot be patented.

      Here is a link to a petition that can be used to persuade science and medicine to investigate cures for lyme that cannot be patented. The claims cannot be proven false or true without an investigation. I hope you and your followers will sign this petition to help end Lyme Disease once and for all.

      http://www.change.org/petitions/view/will_medicine...

    • donotfear profile image
      Author

      donotfear 7 years ago from The Boondocks

      technorican: I'm so sorry about your sister! What a terrible disease. I wish she could have found the answers sooner.

      I've already tested thru Igenex. I'm being treated by a LLMD. Thank you for your input.

    • technorican profile image

      technorican 7 years ago from Houston

      My younger sister died of ALS last year. She was 52 years old and a fitness trainer. She didn't want to be a mind trapped in a body. It is a horrible disease.

      Lyme disease and babesiosis mimic ALS and MS. The standard Lyme disease is NOT sufficient. Get the Western Blot test ASAP and have it sent to a respected lab such as iGeneX. My sister tested positive for babesiosis. There was some improvement with the treatment for a while but she had already lost use of her body by then.

    • donotfear profile image
      Author

      donotfear 7 years ago from The Boondocks

      cheaptrick: Thank you for your interest & compassion! It's cool. I'm just glad to know I've got a connection into the research part of this mystery. You're a real trooper. By the way, Lyme is a REAL big problem in Florida. Just look at the poll.

    • cheaptrick profile image

      cheaptrick 7 years ago from the bridge of sighs

      Hi'a D.Sorry I haven't gotten back to you with the info on Lyme but my understanding is my friend is working on it as time allows.Apparently there is some urgency hear because he tells me the department he works in has been directed to prioritise Lyme.I am try-in D and will stay on this I promise.Be well my friend.

      Dean

    • donotfear profile image
      Author

      donotfear 7 years ago from The Boondocks

      hello: Thank you for your continued support. You've been a great inspiriation for me each time I find one of your comments on my articles. Your thoughtfulness is much appreciated.

    • Hello, hello, profile image

      Hello, hello, 7 years ago from London, UK

      At long last I get round to read you hub and the terrific research and work you put in. My computer was down and now I am catching up with it. I am so sorry you hae such a hard fight on your hands but I admire you for putting up that fight and informing people of everything you found in your research.

    • donotfear profile image
      Author

      donotfear 7 years ago from The Boondocks

      Sister Carlotta: Thank you very much.

    • drpastorcarlotta profile image

      Pastor Dr. Carlotta Boles 7 years ago from BREAKOUT MINISTRIES, INC. KC

      You have truly did your researh on this subject!!!! WOW! I am PROUD of you!!!!!! GREAT HUB my friend, I am prayong for you!!! Much love...

    • donotfear profile image
      Author

      donotfear 7 years ago from The Boondocks

      sheila b.: Oh yes, I just started reading the book 'Lab 257. It tells all about how the deer go back & forth to the island. I bet they still do...I mean, as long as there are deer, they are gonna swim out there. The place is covered with ticks, still! I'm sorry your granddaugter got Lyme. I hope she's doing well....

      Hopefulinga: Thank you for voting! It's okay to put where you think you got it.

    • profile image

      hopefulinga 7 years ago

      I put north GA, but I'm really not sure because I've had this for so long. It could have even been central FL, east coast---which we have visited a lot over the years.

      But, since N GA is where I was diagnosed, that's what I put. :)

    • sheila b. profile image

      sheila b. 7 years ago

      I didn't see Long Island, New York. Manorville, to be exact. This was my granddaughter who got it, quite a few years ago. Has anyone told you deer swin onto Plum Island? And off again.

    • donotfear profile image
      Author

      donotfear 7 years ago from The Boondocks

      50 Caliber: As usual I can count on you! Thanks.

      payne: Thanks for the advice. Ten-four.

    • profile image

      payne 7 years ago

      use the directory on the lymenet site... it usaully shows new memebers and old as to local...if all would be honest in where, but, some people put earth or north pole

    • 50 Caliber profile image

      50 Caliber 7 years ago from Arizona

      donotfear, I'm still following along and voted N.Ca and west Tn., I find your drive for answers and your conviction to the issue quite honorable, 50

    • donotfear profile image
      Author

      donotfear 7 years ago from The Boondocks

      Art: I think the ticks are immune to everything! Remember how they covered us on the mountain? It was like the twilight zone! I hope you voted.....I'll send Heidi a message to vote also. I wanna blow the top off with activism!

      Razzle: Thanks for voting. Sometimes it's hard to know for sure. Sounds like that fire ant bite is suspicious, but WA state is definitely not immune. HMMMMMM.

    • profile image

      Razzle 7 years ago

      I voted for Southern California even though we don't know for certain where I got infected...I never had a known tick bite or bull's eye rash. But symptoms started after I was bitten by a red fire ant in the California Desert. It is also possible that I was infected when we moved to Washington State (Western part), because that's were we had moved to just prior to when my symptoms started.

    • Art 4 Life profile image

      Art 4 Life 7 years ago from in the middle of nowhere....

      Great hub dear friend~ I went camping this weekend, at the Buffalo, and got COVERED with the nasty things~ I had to really search to get them all... it seems even with bug spray they are still trying to get you! Do you think they are getting immune to the spray?

      Hope you do good on your research...hugs~

      Art

    • donotfear profile image
      Author

      donotfear 7 years ago from The Boondocks

      Traveler:

      The results will be used for we, as Lyme disease sufferers to help prove that the disease is in ALL states, not just the Norheast. I'm hoping to do a research paper (on my own, not for school), plus, I want to post the results in a month or so.

    • profile image

      Traveler 7 years ago

      How will these results be used?

    • donotfear profile image
      Author

      donotfear 7 years ago from The Boondocks

      breafastpop: I know what you mean. I freak if I see a tick now!

    • breakfastpop profile image

      breakfastpop 7 years ago

      I have lived in fear of Lyme disease for a long time. I worked for a neurologist for 4 years and saw so many cases of this terrible disease. My family thought I was nuts every time I told them not to run barefoot on the grass.