For All Those Who Are Lyme Crazy. Advice. Misdiagnosis. Treatment. Testing Advice. Important.
My doctor thinks I am crazy?!
I have many symptoms of Lyme but my doctor refuses me tests, treatment & dismisses me!
What do I do?
This country is quite frankly is a joke when it comes to testing and diagnosing Lyme. There is no urgency or worry about how serious this disease is.
You mention Lyme and they don't want to deal with you or the tests/treatments needed.
In the U.K. we no longer carry out the detailed tests to diagnose Lyme.
Yet Lyme disease is becoming an epidemic!
You wouldn't think it was though, with lack of funding put in place by Governments to fund research, treatments being ridiculously expensive, testing not being carried out and consultants being sued, struck off and losing their licenses for fighting their corner on Lyme being so serious.
It's not right.
One bite - a lifetime of pain.
So how can you get the tests and treatment needed?
My advice to you, is email Armin Labs. They are based in Germany but have the latest Lyme testing equipment in their labs. They will send you a kit which you will have to take to a drop in day clinic to enable them to draw the bloods for you. Then you must Fed Ex the bloods back to Armin Labs. They will provide the address etc and the kit explains the full process. You will then have to wait a week or so for the results but once you receive the results it will either give you answers or peace of mind.
If the results show strains of Borellia are present then take the results back to your GP they then should treat you or refer you to someone who can.
Don't be fobbed off and diagnosed with another disease or worse sent to a therapist because you are crazy!
The damages if Lyme is left untreated are fatal, deadly and truly miserable.
There have been 114 recorded deaths in the U.S due to Lyme 1999-2003. You may say- wow that's low, what is the problem? It can't be that fatal.
There have been 114 reported deaths that have been stated on their death certificates. The low rate isn't due to Lyme not being a killer, it's due to a number of reasons.
1. With Lyme comes a many co-infections. Which cause other symptoms and diseases. Between them all it's hard to say what has got the better of the person. Due to many deaths being heart failure, heart attacks or organ failures they are simply written on their death certificates as such. No mention of Lyme. So it isn't tracked and recorded.
2. The health industry know full well the dangers of Lyme and how hard and long the process is to treat. They and the insurance companies can't afford for Lyme to begin becoming more of a common issue as that would mean they would have to pump more money into it and pay more money out for treatments, tests and research for paients. Money, money, money - priorities right?!
3. Many have committed sucide due to Lyme but these are never mentioned or brought into play. Never highlighted.
4. 25 per cent who die from Alzheimer's suffered from chronic Lyme having strains of Borellia in their bodies.
5. Many doctors just write down the simple infection or top symptom the person was suffering from as the cause of death. They don't do proper tests. Lyme isn't called the 'great imitator' for nothing. It gets misdiagnosied, mistreated and hides in the shadows!
A quote from owndoctor.com -
'Lyme is nearly never stated as the cause of death, to protect hospitals and doctors from malpractice lawsuits.'
All to save a dollar or two.
Always money - always the priority.
I would just like to create a little memorial for all the people who have died due to Lyme and had Lyme recorded as responsible for their deaths. There are a few sucide victims in the too.
People who died of Lyme disease Carole M. C. Alton, Angela Amato, Grace Amond, Harold G. Anderson, James Andrew "Andy" Anderson, Edward Stanley Arnold, Deiby Ashkenazy, June L. Anderson Atkins (Alzheimer's & Lyme), Lothar Bachmann, Julian B. Backus, Sue Baiata (suicide), Jerry Balistreri, Peter Anthony Banducci (ALS & Lyme), Gregory Lee Bankert, Patricia Jones Bauman, Moonface Bear (Leukemia & Lyme), Lonnie Benedict (ALS & Lyme), Eric Bengtson (suicide), Larry Bennett, Kurt Hilding Billing (suicide), Jonathan Bleefield, John Bleiweiss (LLMD and Lyme patient, LLMD-persecution related suicide), Deborah Jean Bodden (suicide), William "Billy" Boesché (ALS & Lyme), Bryan Bower, Judith Ross Boynton (ALS & Lyme), Charlie Bradley, Martha J. "Marty" Bradley, Scott Brazil (ALS & Lyme), Lauren Brooks, Anne Brown, Harry Burke, Pamela Truscott Byrne, Terry Cain (ALS & Lyme), Jerry Carrington (suicide), Watt Carter, Kathleen Cavert, Phil Chapman (ALS & Lyme), Carrie Chase, Bill Chinnock (suicide), Theresa Jean Wells Clay, Nicole Coats, Elizabeth A. Bowley Coen (suicide), Michael Coers (ALS & Lyme), David Cole, Jane Colfax, Luther Conant (ALS & Lyme), Patricia Elaine Jamison Cooley, Kimberly Ann "Kym" Nagle Cooper, Rachel Coxon, Vickie Crawford (ALS & Lyme), Alasdair Crockett (suicide), Katherine Alderson Crowe (ALS & Lyme), Michael Cunningham (ALS & Lyme), Jon Williams Davis, Carole A. Van Doorn (ALS & Lyme), John Drulle, James "Jimmy" Duarte, Martin Frank Dumke, Jeannette Eichelberger, Martin Eisenhardt, Kathleen Gambon Erdei, John A. Every, Herbert "Bart" Fenolio (initially diagnosed with ALS, then Lyme), Frank John Ferrigno, Ronald S. Ferris (suicide), Rick Fincham, Paul Fjare, Linda K. Jones Flory, Jamie Forschner, Shirley Forsman, Geri Robin Teitelbaum Fosseen, Joan Maura Friedenberg, Linda M. Fuller, Brittany Margarete Gallgher, Freida R. Gaultney, William D. Geiser, Julia Gilbert (possible suicide), Doris M. Grade, Gordon P. Grafton Jr., Michael Keith "Mike" Gregory (ALS & Lyme), Bryan Grimes Jr., Ryan Guerin, Stephen L. Gumport, Kenneth Hagen (MS & Lyme), Robert Michael Hanson, Peter Edgar Hare, Lila Star Smith Harms (suicide), Harry Hartner (suicide), Angela Quinn Hausman, Susan Hawkes-Koons (ALS & Lyme), Michelle Heap, Sue Ellen Helms, Alexandria Hermstad (ALS & Lyme), Stephen Allen Herring, Michael Hinsberger (MS & ALS & Lyme), Deanice Hinton, Brian Hirsch (ALS & Lyme), Robert J. Hoffmann (ALS & Lyme), Ted Paul Richard Hoggard, Barry Horton (ALS & Lyme), Hilary Fuller Inks, Everett "Ed" Francis Ives, Vincent Jachetta, Hartley Everette Jackson (Alzheimer's & Lyme), Karl Joedicke, Glenn Edward Killion, Dillon Jamison King (suicide), Lindsay K Kinneberg, Catherine Klapak, James Paine Koch, James Kohnle (allegedly murdered by his wife, allegedly due to his Lyme), Theodore F. "Ted" Kotula, Vernon Dale Kyle, Christina Marie "Christy" Lambeth, Erwin Lamp (suicide), Jon Pierre Lavallee, Jena Hellman Leblang, Jason Thomas Lee, Michael G. Linebaugh (ALS & Lyme), Jan Linton (self-defenestration - verdict of death by misadventure), Vicki Logan, Preston H. Longino, Ellen Agnes Loughlin, James "Jim" W. Loughran, Teresa "Terri" Royer MacKnight, Gabriele Magnotta, Bruno C. Malvezzi, J. Howard Marshall Jr., John Martini, James Roderick Mason, Alfredo Mathew Jr. (suicide), Susan Mayer-Smith (died of self-medication against the pain), Ann H. McChesney, Kimberly Carol McEachern, David A. McHoul, Karl McManus, Edward L. "Ted" McNeil, Chester A. Mellen, Kelly Renee Merando, Balsorah Lamar Miller (ALS & Lyme), Liz Missett (Lupus & Lyme), Craig W. Moon (Leukemia & Lyme), Shirley L. Moore, Jesse Jonah Goldsmith Morgan, Richard T. Mullin, DeWayne Murphy, Theda Myint (suicide): Kaiti Nagel, Steve Nelson, Michael Newman (set himself on fire - open verdict), William "Bill" Lee Nichols (suicide), Georgia Junior "Junie" Nicol, George Nijboer, James B. Olson (initially diagnosed with Asthma, then ALS, then Lyme), Ed Parker (ALS & Lyme), Brett Anthony Paul, Pat Pepper (ALS & Lyme), Gilbert "Gib" Thornton Perkins, Jennifer Elaine Pesci, Andrea Ortiz Peterson, Brian Pierson (ALS and Lyme), John Thomas "Tommy" Pitner, John Douglas Powell (ALS & Lyme), Isabella Radestock, Andrea Raphael, Russell Paul Reach, Teresa McGilley Redlingshafer, Amanda Reese, Frank Ray Rifkin, Kevin Ring (suicide), Meredith Ruth Roberts, Thomas "Curry" Roberts (suicide), Richard R. Robley, Karen Johnson Rose, Adam C. Rowett (suicide), Harold Roy (likely suicide), James Sanders, Jim Sazani, Timothy Alan "Tim" Selepec, Amanda Schmidt, Stephen Ross Seibert, Priscilla Moulton Shafer (ALS & Lyme), Mary Shea (suicide), Steve Philip Shears, Cailean Walker Sheeran (suicide), Hilary Skinner (suicide), C. Gordon Smith, Roberta J. Sorbello-Luongo (ALS & Lyme & coinfections), Vincent Sota (ALS & Lyme), Johnette B. Sowder, Erin Elizabeth Spillers, Robert "Robby" Stamps, Beverly Stanton, Lori Hall Steele (ALS or Lyme), George R. Strobo & Jonalyn Maureen Strobo (dual suicide, both had Lyme), Karen Sullivan (suicide), Jodi Lynn Swift, Christopher Peter Thomas, David Lee Thomas, Mike Thomas (ALS & Lyme), Jenny Umpress, Clarissa Tilghman Yost, Philip Trapolsi, Cynthia Tolles Tseng, Carlton Tucker ("fudged number"), Jenny Umphress, Myrna Vallejo, Piet Van Leer, Diane Marie Antonia Varsi, Peter Vyselaar, Bryce H. Wagner, Sterling Edgar Walton, Ellen Havican Watson (likely suicide), Barbara Frances Weaver, Steven F. Wells (ALS & Lyme), Leslie Rae Wermers (Lyme & coinfections. Interview from 2007, died in 2008. Official cause of death: "cardiac arrest"..), JoAnne Whitaker (invented the 100% accurate Q-RIBb test for Lyme), George Wendell White Jr. (suicide), Robert Earl Wicker, Michael Wilson, Travis Allen Wilson, Lori Lynn Daman Widlund, Joyce Marie Woods, Kendall Wooten, William James Zell (ALS & Lyme).
All these people could have been saved when a timely diagnosis would have been made and proper treatment would have been administered. 13% commited suicide.
It's so upsetting and fustrating how paitents get treated.
Just yesterday I had to pay a visit to the hospital as my symptoms were becoming and have become heighten recently. My family wanted me to be checked out to ensure nothing else was going on, knowing full well the dangers of Lyme.
However just the mention of Lyme to the doctors there caused them to dismiss me. 'Well you have Lyme - we can't treat you! Go back to the person who is treating you.' They did routine bloods just make it look like they have done something. But they were totally pointless as they were abnormal due to Lyme! They didn't examine me properly. So they didn't show anything new or were any help.
Why is it that,
1. They won't test you for Lyme if they suspect you have it.
2. Some won't accept test results from abroad.
3. They will diagnose you with another dieseases - And CFS, Parkinson's, Fibromyalgia etc.
4. When you tell them you suffer with Lyme they will dismiss you, not willing to treat you and tell you that all your symptoms are common as a Lyme paitent ( well if they know the symptoms so well, why did it take me 9 years, hundreds of doctors appointments and dozens of doctors to diagnose me!)
It's a joke!!
It take on average 3.5 years for a paitent to be diagnosed with Lyme. Which by this time so much damage has been done, to the nervous system, brain, heart and vital organs that it's not just the viruses you have to fight but all the other diseases and complications the damage has caused.
Tommy Hilfiger's daughter Ally has suffered with Lyme for 25 years! She is only 31 years old!!
She has had treatment after treatment. It also took her years to be diagnosed, with dozens of doctors. If Tommy Hilfiger with his massive business empire can't find treatments, can't understand the expense of treatments, along with lack of research and how long it took them to find a doctor who dianosed Ally!! Well where is the hope for you and I.
This issue isn't small. It is fatal, deadly, miserable and so damn serious.
Please, please! If you do have the ANY symptoms just get checked out and if you need bloods PLEASE just spend the money and get Armin Labs involved. It may be an expense but health is priceless!! You would definitely understand if you are suffering from this awful disease. Those bloods may save you from a lifetime of suffering or I could be the key to an improved life !
Any questions ? Reach out.
Please - never feel alone. This disease is a lonely one. Don't fall into it's trap.
Speak out, share your story and spread the word.
Thank you for reading.
I hope you find this post touching, educating but also motivating.
Let's keep speaking out, the more voices - the louder the message that can't be silenced.
Love and peace