Lyme Disease Patients from Around the World tell us Their Story

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We keep getting told by doctors that Lyme disease doesn’t exist anywhere other then the East Coast in the US. None of the Lyme maps are current or kept up to date by the health agencies we are supposed to trust. So post your location below and a brief summary of what it is like where you live to have Lyme Disease.

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10 thoughts on “Lyme Disease Patients from Around the World tell us Their Story”

  1. Appleton, Wisconsin
    Bit in 2012 by 2 ticks. One with Lymes and the other carrying a different infectious disease.

    Medical community is ignorant and refuses to educate themselves. Now if I had breast cancer here I’d have all sorts of support and people would understand. I have Type 2 Diabetes as well as Factor 5 leiden and now liver issues and their trying to figure out what else.

    Long time friendships have been lost because I’m never sure if I’ll actually be able to show up for a party or planned event. It depends upon the day and the hour.

  2. Debbie Ewart, Frankford, DE I have had lyme for the last 14 yrs. I been through at least 20 doctors for 12 yrs. I been on every heavy duty antibiotic there is. Including the IV for 3 months.

    I couldn’t walk at all in the beginning, I lost over 25 pounds. It took me a little more than a year to get up n walk and take care of my self!

    I am NOT cured, but I am much better now. I have been down the road with herbs, which has helped. I am now doing Essential oils, which has been the best treatment for me.

    I am a activist for lyme disease in Delaware. We have come a long way over Lyme, but we still have a long way to go

  3. Betty Gordon, Iowa

    Misdiagnosed 35 yrs. by 40-50 drs! Using my daily journal went back to when I got deathly sick.

    1st wrong diagnosis was mononucleosis, the kissing disease, at age 20! I’m now 67!

    Dx correctly June 2004; treated for lyme for 2.5 yrs. by 2 different drs.

    Before correct dx, I was dx with diabetes 2; lyme and diabetes don’t go together; you can’t get a handle on BOTH of these illnesses.

    Tested blood for many other things; been treating all these things found wrong at the time and still.

    Quit lyme treatments since it wasn’t working due to my diabetes 2.

    My husband passed away 18 months ago from stage 4 cancer of r. lung & liver areas 2 NIGHTS AFTER HIS DIAGNOSIS~

    Total shock as he had advanced parkinsons’ and dementia bad.

    I donated his body to Des Moines University Osteopathic College for medical training of future drs.

    I wanted his brain diagnosed; they didn’t do that; but they didn’t tell me either they remove the brains preserving them so they could be used to teach students about too.

    I had DURAY RESEARCH FOUNDATION led by Dr. Alan MacDonald perform Jack’s brain autopsy.

    Paula Pierce in her Excalibur lab in Norman, Okla. was the 1st to do blood staining & discovered Jack’s brain made WORLDWIDE HISTORY! Alan confirmed her diagnosis.

    He had 2 diseases NEVER found together before:

    Borrelia/Lyme disease and Lewy body dementia causing violent hallucinations like actor, Robin Williams had.

    Jack was NOT diagnosed or treated for either of these diseases! Using his medical chart records, Jack also was not diagnosed for 35 years having LYME disease also.

    My Igenex western blot was CDC POSITIVE and so I was counted in Iowa’s 2004 Lyme CDC statistics.

    I had Jack’s blood tested too at Igenex; CDC NEGATIVE; but he had so many positives on both IGM & IGG.

    Since Jack is 1st in world with these diagnosis; we have written up his case to be published in a future scientific medical journal; name unknown at this time.

    Last minute things are being done at this time before submitting it for publication.

    I will be 1st co-author as a NON-MEDICAL person over 3 medical folks: Paula Pierce, Dr. Alan MacDonald, and Tom Grier, who is writing this up compiling all of our info.

    Jack’s poster board showing his brain result photos with another man having BOTH same illnesses as Jack found 2 wks. after Jack’s discovery can be found here: posters/5-127

    Between Jack and me, we’ve had 82.5 yrs. of chronic Lyme to date.

    I’ve tried to get Jack’s death certificate AMENDED showing that Borrelia/Lyme, Lewy body dementia, and chronic kidney failure contributed to his death vs. the cancer diagnosis showing only lung cancer; they are NOT trying to work with me at all.

    Also, I contacted Iowa’s State Health Dept. to get Jack added to Iowa’s LYME CDC statistics; they are requiring a COURT ORDER be gotten showing what should be stated on his death certificate.

    Fyi, earlier, they screwed it up showing he had COLON CANCER. I checked with the dr. signing death certificate. WRONG; they went from paper to internet, and a typo was made.

    They corrected that, but it took 5-6 months to do this.

    Betty Gordon, Iowa aka bettyg 😉

  4. Sydney, Australia – Lyme isn’t recognised here – treatment expensive, no assistance. Thankfully we have a few courageous Drs who’ve educated themselves and are treating Lyme. I’m doing ok – diagnosed in Jan 2016 after years of multiple health issues that didn’t respond to traetment. Am on one antibiotic and herbs from the Buhner protocol, supplements, dietary modifications etc. Starting to have better days amongst the torturous ones. Others in Australia much worse off than myself.

  5. Pennsylvania, USA. I don’t remember one particular tick…as I pulled several off me over the years. I spent every single day walking my dog in the woods, but I was under the impression if I did not get a bulls eye rash I did not have lyme….assuming all along I was fine. Never got a bulls eye rash, but did have a strange rash in many places on my body. I began getting sick in 2009 (the list of symptoms is long)and got diagnosed one month ago…7 years. One day I was full of life and living to the fullest and the next day….bam! Sick! Sick like I had never been sick. And I never got better. It has been a long, long road to diagnosis. Back in 2009, no one tested me for lyme but for autoimmune problems which always came back negative, so I was never treated for my health problems. I was sent away being told I had anxiety (which I do not have) and to take these psychiatric meds. The doctors where I lived were of no help whatsoever. I am also a type 1 diabetic, which my drs like to blame for my chronic sickness. However, my blood sugars are excellent, so um….NO not buying it!
    Last year we moved and I went to a new primary doctor. Three months ago, I started having tachycardia. My primary dr did all the tests and my heart is fine….except it likes to beat fast. He ran every test imaginable to find out why I am always so sick. My bloodwork tested positive for Lupus (which turns out I do not have) and positive for hashimotos thyroiditis. He also brought up Lyme. I was like say what???? Really, I never had a bulls eye rash? He talked to me about all the misconceptions of lyme and the diseases that lyme mimics (one being lupus). Thank god I found him. He gave his complete support for me to visit a lyme literate doctor who is now treating me for lyme and coinfections.
    It has been a long road from where I began, but I finally have hope that someday I will be back to the old me…healthy and vibrant and have the energy and strength to do all the crazy stuff I dream up! I am also looking forward to giving my husband a break from the constant worry he has and how tired he is from carrying the load around here.

    Hugs to all who are infected and their caregivers and families who stand by them!!

  6. I am from Maryland. I was diagnosed in 1991 right after the birth of my first child. I did have a rebellious Dr. and she was able to buck the system and get me 6 weeks of IV rochephin. The infectious disease specialist told me that I would now be very sick when I got other non related illnesses. No doctor ever offered any other treatment or follow up for me or for the child I had given birth to while infected. In the year that followed I had another child. My son was born with lyme and I did not find out about that until he was 14. He refuses to go for treatment. His fiance has “sever rheumatoid arthritis” that does not run in her family. She needs the aid of a walker and monthly actemra infusions. She is 25. My son is asymptomatic but has mild autism. I cannot do physical labor. I slowly deteriorated and was not able to exercise due to the joint and muscle pain causing very unhealthy weight gain. I suffer from migraines and concentration and memory problems. Because I was diagnosed before the “crack down” I was able to keep off the radar and I chose to do that for fear of it affecting my ability to get a job or healthcare coverage. I am currently using nutrition, essential oils and hydrotherapy to keep mobile. I believe I had lyme for about a year before I was diagnosed.

  7. Even though I’ve been in treatment for almost 3 years, Lyme disease is still keeping me away from the life I used to enjoy. A well meaning doctor referred me to an infectious disease specialist but he refused to see me unless I could show him a positive Canadian blood result. A picture of the erythema migrans (Lyme rash) on my shin, a positive US blood test and clinical diagnosis by an LLMD in the US did little to convince him otherwise. So here I am – still sick…. and neglected by the very doctor who should be helping me.

  8. I was just diagnosed with Lyme disease and mold biotoxin illness. I was 25, living in Northwest Indiana, when I was infected. I was young and dumb then. The bullseye rash was present, but back then, I don’t think many people knew what to do. I’m 39 now, and have had mental issues since 2011: most assuredly from Lyme and mold. I hope the traditional medical community changes it’s tone, and starts to work with alternative medicine. I worked in medicine for 11+ years, before I had to quit. I just couldn’t multitask anymore. I start my Lyme protocol tomorrow. I’m both excited and scared.

  9. France. I have access to nurses for IV treatment, my disease was recognized as a long term condition but long term treatment is denied and antibiotics are out of pocket.

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