Monday, July 10, 2017

My Open Letter to Doctors, Nurses and all Health Agencies about Lyme

I don't know if this letter will be given much credit, I am just an average individual who has been battling Chronic Lyme for 4 years.  But I was trained annually on prevention, I have a masters in environmental health, I know I was bitten, I know it was engorged, I had a rash, I got sick and yet four years later I have had to use up most of savings for treatment in the US, give up my management position and legally fight for insurance, while trying to regain as much health as possible.

I help people weekly, to try to get appropriate treatment for a bite or symptoms, to save them, so they can learn from what I have learned.  Yet, I fail, even when I send them with all the supporting documentation and studies and guide them as best I know how. https://www.linkedin.com/pulse/human-rights-violations-relapsing-fever-lyme-disease-luche-thayer

So, I have decided to write this letter, so those who care, can read it.  I beg of you,  as a member of the medical profession to just read and consider the following information.  I will reference sources for all of my points and within those sources you will find hundreds of studies to support it.  They say doctors don't have time to read all the latest science and that I can understand.  But you should know there are over 700 peer reviewed scientific papers that are showing more up to date information on Lyme and you are not being told.

Please, just please just consider what if all of this is true? What if a few minor factors in the details determine whether someone you care for ends up with a lifelong chronic illness or if they can walk away and never think about Lyme again?  What if you had the power to make sure those people never had to worry about Lyme or a lifelong illness?  Well, you do have that power doctors, nurses, and public health educators.  You most definitely do.

I write this letter pleading with all of those in health to seriously consider the items I share with you here - to save many from my demise. The solutions are so simple its ridiculous, yet from what I see the fear of Chronic Lyme is going to become a reality for hundreds of thousands more if we don't fix a few small things.

The 24 Hour Rule: If there is anything we do know about nature it is that rules don't apply.  We cannot control nature, it is not exact and we cannot assume it works the exact same way every time.  This "rule" is leaving people without treatment, giving them a false sense of security and are becoming infected every day. 

This rule was established because the tick typically attaches and feeds on a human until full. Once full it can regurgitate the blood with the lyme infection back into the human.  It takes 24 hours or more for this to occur so the rule was established for this reason.

Here is why this rule should not be followed:
1) It assumes that the tick was never attached to another host or partially fed somewhere else.  Studies have shown that ticks have partially fed, detached and attached to a new host. This greatly reduces the time before regurgitation.
http://danielcameronmd.com/have-you-been-bitten-by-a-partially-fed-tick/

2) Ticks transmit more than just Lyme and some infections that are even more debilitating that Lyme.  Studies have shown that some of these infections are transmitted in minutes.  Powassan Virus which can be deadly was proven in a study to be transmitted within 15 minutes.  I can't imagine there are too many ticks that are removed within that window, especially since the tick injects an anesthetic so you don't feel the bite. 
http://northcountrynow.com/news/ticked-new-info-lyme-disease-north-country-people-should-know-0183893

David H. Persing, MD, PhD, chief medical and technology officer for Cepheid, a California biotech firm and a world expert in molecular diagnostics.  "I don't think we know half of the agents that are potentially transmissible by ticks"

3) Lyme has been proven in animal studies to be transmitted within 6 hours.  So it is only safe to assume that is should function the same way in humans. 
http://www.lymedisease.org/lyme-disease-myth/

4) It also assumes the tick was never stressed.  If stressed it is known that the tick will prematurely regurgitate into the human host.  This could mean pressure on the tick which is possible especially if you don't even know its there.  They like to attach in hidden areas where pressure, scratching and stress would be likely, i.e. armpits, toes, head, etc.

5) Finally it assumes that the removal was proper and flawless.  Who can know whether the tick was stressed during removal and regurgitated before full removal.  Its common for removals not to be perfect and incredibly likely that at some point while preparing for the final pull the tick was exposed to some stress and regurgitated back.

"The bad news is that improper tick removal may increase the chances of infection and disease." Dr. Jorge Parada, MD, MPH, FACP, FIDSA Medical Spokesperson for the National Pest Management Association (NPMA) and infectious disease specialist, Loyola University

6) And...This rule used to be 72 hours, then 48, then 36 and now its 24.  What happens if someone doesn't get treated because its 24 today but you finally get told to apply 6 hours next year. The science is saying so, so you will eventually be told.
https://www.lymedisease.org/hard-science-on-lyme-ticks-can-transmit-infection-the-first-day/

Just Ask: Dr. Richard Horowitz, Dr. Laurie Radovsky, Dr. Burrascano, Dr. Nevena Zubcevik, Dr. Liz Zubek, they and many others have written about this.

The Bullseye Rash: It is becoming more known that a very small minority of people with Lyme are likely to see a bullseye rash.  But what is less known is that only 9% of that minority will show the typical bullseye rash.  But people are being told their rash is not a bullseye and therefore do not have lyme - not true.  There are a minimum of 7 types of rashes that are representative of Lyme and a rash suggests infection.  
https://www.ncbi.nlm.nih.gov/pubmed/17945460

I know of far too many Chronic Lyme patients that were once told they had a spider bite.  Please don't assume so quickly.  There are some good resources for the different types of lyme rashes:
http://www.bayarealyme.org/blog/lyme-disease-bullseye-rash/
https://www.cdc.gov/lyme/signs_symptoms/rashes.html

The One-Day Prophylactic (preventive) Treatment: is based on only one study that was only successful in 4 out of 5 patients and by successful they mean the rash was prevented, not the Lyme.  
http://vermontlyme.com/2017/04/24/problem-single-dose-doxycycline-tick-bites/

"IDSA sometimes recommends a one-time 200-mg dose of Doxycycline. The only study supporting a single dose of Doxycycline demonstrated that it could prevent rashes but did not study whether it could prevent any chronic manifestations of Lyme disease." Dr. Daniel Cameron, International Lyme and Associated Diseases Society (ILADS) 
http://danielcameronmd.com/importance-second-opinion-prophylactic-treatment-tick-bite/

ILADS recommends that prophylactic treatment should be implemented for at least three weeks, with follow-up after a tick bite [as Bb Lyme spirochetes have the ability to penetrate the body and cells in less than 24 hours following an embedded tick bite]. http://www.tandfonline.com/doi/full/10.1586/14787210.2014.940900

I know of people that were prescribed the one day dose many days after the bite.  Both treatment guidelines will tell you thats pointless by then.  But, I just don't understand why a few weeks treatment of antibiotics is withheld based on one, not very successful study vs the hundreds that are showing Lyme persistence.  This is not about whether you get a rash or not, this is about whether you get a lifelong debilitating disease. Please treat the bite...properly. You have the collective ability to save thousands.
https://sites.google.com/site/getitrighttreatthebite/

And if you do decide to prescribe the one-day dose that eliminates the rash,  please consider that you have eliminated the single, most powerful symptom to diagnose a Lyme infection, the best symptom to tell you, without a doubt, that this person needs many weeks of antibiotics.

A rash and/or flu like symptoms following a tick bite: it's lyme, treatment is needed.  There is no debate here, please treat.  

And if I could ask one more favour here: please talk to your patients about the two different guidelines that presently exist for treatment.  Canada's Federal Framework on Lyme now refers to both treatment guidelines and The Federal Health Committee has formally requested that both be referred to on the Public Health Website (but things move slowly) so I ask that you know both: ILADS & IDSA.  You are not going to find many specialists in Canada that agree with me on that.  There are very few ILADS doctors in Canada which could explain why we all have to travel to the US for help.  You should know: the ILADS Guidelines are presently the ONLY ones that comply with the National Guidelines Clearinghouse and the Institute of Medicine.
http://www.ilads.org/ilads_news/2015/ilads-treatment-guidelines-are-now-summarized-on-the-national-guideline-clearinghouse-website/
https://www.guideline.gov/summaries/summary/49320/evidence-assessments-and-guideline-recommendations-in-lyme-disease-the-clinical-management-of-known-tick-bites-erythema-migrans-rashes-and-persistent-disease

The reason I ask that you share both is because one suggests 2-3 weeks treatment and the other 4-6 weeks treatment with symptoms.  It breaks my heart when someone is given 2 weeks with symptoms when 2-4 more could eliminate the fear of Lyme for good.  The only time you can 100% cure Lyme is at the very beginning.  The further away you get from initial infection, the more persistent the bacteria gets and the more irreversible damage is done.
http://www.ilads.org/lyme/treatment-guideline.php
https://canlyme.com/just-diagnosed/treatment/

I understand we want to decrease the use of antibiotics.  But at what cost?  Is this the place and time to be stingy?  I can promise you no one dealing with Chronic Lyme would tell you that saving 2 weeks of antibiotics is worth the hell they now live in.  Oh and by the way, my dog was given 6 weeks treatment with symptoms.

And finally, the Minister of Health for Ontario sent a letter last year (2016) to the College of Physicians and Surgeons stating that Lyme should be primarily a clinical diagnosis and not to rely on the blood test to be positive for treatment.  
http://ocfp.on.ca/docs/default-source/default-document-library/minister-letter-to-docs-re-lyme-2016-07-29_english.pdf?sfvrsn=582df889_0

I think the fact that the blood test is inadequate is becoming well known in the medical community. You may note that just last month (June 2017) the Centre for Disease Control (CDC) finally released this fact and suggested you should treat with antibiotics upon suspicion.  So, although it is too late for me and many others (I was not treated because my blood test was negative) I hope this information may save some.  But you should note the CDC is often who we look to for this type of direction.  They came forward with this much too late and way behind Ontario's efforts.  So what other information might we be getting a little to late.

Just know, the science is there to say the bacteria is persistent, can become chronic and infection can be quite rapid.  Please don't dismiss the patient that was once bitten and treated as they could have a chronic infection. Please don't under treat a patient who is just bitten. You have the power to cure them, then and there, for good.  What an amazing influence you can have on the management of this illness.
http://lymeconnection.org/news_publications/meet_the_lyme_disease_experts.html/title/dr-richard-horowitz

Thank you for taking the time and for your consideration.
Yours in fighting Lyme,
Kristy

19 comments:

  1. Hi Kristy,
    My 6 year old just finished 6 weeks of antibiotics after she showed us a a couple of bullseye rashes. I'm just wondering if you have any direction of any Lyme literate doctors I could contact? No one seems to know what the next step should be. I have no idea how to make sure the antibiotics worked and she is Lyme free. Please feel free to contact me at tammy.piche@gmail.com

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    1. I am sorry for the delay in responding to you Tammy. I must say for acute Lyme it is good news that your doctor prescribed 6 weeks. I rarely hear that, so they must have done their homework. I will email you to follow up.

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    2. Unfortunately your webpage is unreadable in the dark green areas. Can have the webmaster change the background. I could really use your article.

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  2. This is a beautiful piece of writing, as well as being very informative and important. I will make a copy to give to people. Thanks, Kristy.

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    1. Thank you so much for your encouraging words and for sharing.

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  3. Rose Mary SarsfieldJuly 16, 2017 at 6:35 PM

    Thank you for this information Kristy. I am travelling in Saskatchewan and woke up yesterday with a tick attached to my shoulder. I went to the local hospital to have it removed, by a nurse..I saw no doctor. She gave me the tick to freeze in our motorhome freezer until we get to somewhere that the tick can be tested. I am hoping that will happen in Alberta because we are a long way from Almonte! In the meantime, I have no symptoms....

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    1. HI Rose Mary - I hope you are still doing well? Did you find a good place to have your tick tested? if not I highly recommend going to: http://www.lloydticklab.ca

      Tick testing
      We will identify the species of ticks sent to Mount Allison University and test them for Borrelia, the bacteria that causes Lyme disease.

      There are two streams of testing - free and slow (NB and PEI only) or paid and faster. The free but slow testing takes approximately 4-12 weeks to provide results. The testing is free but the tick donors must pay postage. Expedited (faster but paid testing) provides results in two weeks from receipt of the tick in the lab. The cost is $20. We currently have funding to test ticks from New Brunswick and PEI so the free testing is available only for ticks collected in these provinces. For ticks collected in other provinces, the testing must be paid (the charge covers the direct cost of tick testing).

      In many provinces, ticks found on humans can be tested through provincial public health offices. In provinces where that is not available, we will test ticks from humans. There is no charge for this testing and the test results are returned in 2 weeks.

      There is no charge for tick identification from either images or ticks sent in directly.

      Ticks should be killed by freezing before submission. Ticks can be placed in a sealed baggie and mailed to: Tick Testing, c/o Dr. Vett Lloyd, Dept. Biology, Mt. Allison University, 63B York St., Sackville, NB E4L 1G7.

      It is essential that a phone number, email address or FAX number be provided if the results are to be returned to the tick donor. There is no funding to return results by mail.
      This is not a clinical test and the information is for research purposes only. Your veterinarian or health care provider should be consulted to discuss any health implications of the results.

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  4. Kristy, I thank you for writing such an informative and well-researched and supported article. Great job! ����If any of my doctors had read this and taken it to heart 28 years ago....I likely would not have had a lifetime of pain and disability with chronic persistent TBD's. I was bitten in 1989. It is now 2017 and I am not age 31....but age 60. I suffered too many body damages. Cardiac and other. I pray that medical personnel will learn about these vicious tick infections. I do my best to inform about everybody I meet. I don't want to see more lives and careers destroyed. Thanks again.

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    1. I am very sorry to hear your story Bonnie and your struggle. Its is too common these days and I pray for this to stop. I too battle cardiac issues and it is very scary. Especially when they get bad and you know no one will help if you go to an ER, so you just pray...Take care and know that I know, how amazingly strong and resilient you have been. You deserve better and I wish that for you.

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  5. Thank you so much for taking the time to do all the research and put together this very well written piece. I will be sharing. I hope more and more doctors, nurses, other healthcare practitioners, and the public in general wake up to the reality that so many of us are needlessly living because of lack of knowledge, understanding, and compassion. I was bitten in 1981 and it was 30 years before I was correctly diagnosed and started treatment. I am still struggling to get well after 6 years of Lyme-specific treatment because after all these years, the organisms have invaded every part of my body. Had doctors known what to do when I first got sick, I wouldn't have suffered for decades, including most of my childhood, not to mention becoming unable to work and the unbelievable amount of money spent on treatments that aren't covered by insurance.

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    1. I agree with you! one of the most frustrating parts of this journey is that it didn't need to happen. A little more understanding, compassion and education could stop this insanity for everyone. I pray every day it will get better.

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  6. I removed a tick from my stomach area about two years ago. I discovered its presence due to a burning sensation on my skin. I had several red blotches over my stomach where the tick was trying to attach, and a larger red area around where it was attached. I went to the emergency at our local hospital. The doctor on duty says I had a histamine reaction. I asked for treatment. She made it out as there was no issue and informed me of the 24 hour rule, and refused treatment. Should I still be concerned for future issues from this bite?
    Sincerely, Andy Oswald

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    1. HI Andy, the one benefit you have is that. you know you were bitten and reacted. So, yes I would be very cognisant of any symptoms you have because they will be dismissed as unrelated in the medical community. Quite often it will appear as recurring infections or virus that seem cyclical. Then maybe joint or muscle pain (often moving to different locations in the body). Fatigue, dizziness, balance issues, etc. If you do become concerned the best would be to submit a request to the ILADS website for a lyme literate doctor in your area. They are truly the only ones who can assess you r symptoms accurately and interpret the testing to see if its a possibility. Some people seek out the assistance of a Lyme Literate Naturopath as prevention even if they are not noticing symptoms or as soon as they do. Hope this helps.

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  7. This comment has been removed by a blog administrator.

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  8. Hi Kristy,
    Thanks for the well-written letter. I'm already planning how I can use the useful info & references found in your letter. I'm going to show it to our family doc. She is not at all Lyme literate, unfortunately. We are desperately looking for a Lyme literate doctor for our daughter. She got bitten 5 years ago. She is very, very sick. It has built over time & we finally put all the puzzle pieces together & recognized Lyme.
    Can you tell me the name of any Lyme literate doctor? My email is llambie@hrsb.ca
    Keep up your great work! You're very intelligent & articulate.
    Thank you
    Laura

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    Replies
    1. Hi Laura, I somehow missed this message, I am sorry. I am not sure where you are from but your best best to is to contact ILADS and they can direct you: contact@ilads.org. If you are in Ontario you can contact info@lymeontario.com and they can help you with more local contacts. I am sorry to hear about your doctor. Finding a doctor who understands Lyme is vital. Dont give up, help is hard to find but it is out there. I will pray for help and recovery for your daughter.

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  9. Hi Kristy
    I have been suffer for over a decade. I was bit in the early 2000's. I have alot of symptoms for lyme. I fought my gp to be tested. Of course the canada test came back negative. I went to a Natural path for tesring. It was positive. I have used up all my savings going to her and can no longer afford to see her. So i went back to my gp with the results and got told its a false positive so no treatment. How does someone wirh little money on the verge of loosing her business because i cant work get her gp to listen. Ive tried seeing other gp and as soon as i tell them i am positive for lyme they dont want to help. Feeling very lost.

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  10. Thanks for sharing this great article.Great information thanks a lot for the detailed article.That is very interesting I love reading and I am always searching for informative information like this.I am very happy to your post about on. Great information, I would like to say your post is very informative.
    bruce kehr

    ReplyDelete

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