Lesson 1120 – The current state of Lyme disease treatment in New Hampshire

fda.gov

fda.gov

Yesterday I got a call from New Hampshire’s U.S. Senator Shaheen’s office regarding a letter I had written about  Lyme disease symptoms in my family and Lyme disease treatment in New Hampshire. I had a chat with one of her aides and this is the email I sent her this morning.

I will continue to fight the good fight on Lyme disease because so many people are unnecessarily being harmed.

It’s not that hard – Lyme disease (and its co-infections) are bacterial infections. We have the drugs to wipe them out.

The problem is that Lyme disease symptoms are not being recognized, testing is abysmal, and treatment varies from Doctor to Doctor.

When it is standard treatment to treat the tuberculosis bacteria for 9 months with multiple antibiotics (and then to treat a relapse, which often occurs within 12 months of stopping treatment) because in the chronic stage the bacteria can form a bio-film that makes antibiotic penetration difficult, I find it hard to understand why Doctors in New Hampshire (the #1 state for reported Lyme disease cases) will dispense 2 – 6 weeks of antibiotics for a CHRONIC Lyme infection (where the bacteria also forms bio-films) and then sends you off to a specialist or even a psychiatrist if your symptoms come back.

If ever there was a definition of stubborn-insanity, it’s that.

I’m just not going to keep quiet about this one.

This is what I sent the to the Senator (and I’d love to hear your thoughts on the subject.)

Our Family –

My kids, after years of struggling, are getting the help they need. I can see significant improvement with their conditions through *just* the use of antibiotics.

As for me, last summer, before I was diagnosed and began treatment, my body was wracked with tendonitis, joint, and nerve pain. I could only go up a flight of stairs if I used my hands to crawl up. My DHMC’s solution was to give me massive amounts of anti-inflammatories, muscle relaxants, and 120 OxyContin tablets A MONTH. Since starting treatment for Lyme disease I have been taking only antibiotics and have not had any narcotics since December 13. Think for a minute about the medical and financial implications of that.

I want to repeat that that’s only with antibiotics. This past Spring, I started playing tennis again. Do I still have symptoms? Of course I do, Lyme has done damage but when you treat the cause instead of the symptoms, you get significant relief.
Money –

I know of many people with Lyme disease (and it’s co-infections which most Dr.s don’t even know about) who have struggled financially as a result. You shouldn’t have to lose your house just because you got sick and especially when the solution is well known, but just not dispensed.

Death –

I have heard of several deaths directly related to Lyme disease – a BACTERIAL INFECTION that can be treated with antibiotics. Most people with Lyme disease look healthy on the outside, it’s difficult to get someone to believe that you are really sick (which is why so many Dr.s send Lyme patients to psychiatrists.)

Often by the time they show persistent symptoms, these patients have tipped into a chronic condition that is significantly more difficult to treat.

Children –

As a journalist and Lyme advocate, I hear story after story of children suffering and being diagnosed with auto-immune diseases. Often these conditions spontaneously arise in the winter months. A consideration, of course, is untreated Lyme disease from the summer months, but who thinks of ticks in the winter?

Schools –

It has been documented and is well accepted that if Lyme disease passes the brain barrier, it creates cognitive impairment. My own daughter went from being a strong student to getting 4 “Fs” in one semester because she had a relapse and literally couldn’t remember anything. She is back on treatment and her cognitive function has greatly improved. How many kids are being placed in the Special Education program because what they really have is a bacterial infection?

Disability –

We are starting to include chronic Lyme disease patients as part of the disabled community that we cover in The New Hampshire Challenge. A bacterial infection is creating a large sub-class of disabled residents.
Epidemic –

New Hampshire has the greatest reported number of Lyme cases in the Union. On top of that the CDC estimates (and they admit that the numbers are probably much higher) that Lyme disease is under-reported by 10X. That means that we have an epidemic in New Hampshire. People are hurting, physically, financially, and economically.

Charlatans –

With any kind of pain and suffering, there are those who will sell snake oil. Many of these “cures” are not regulated and may be more harmful than helpful. But when your Doctor won’t or can’t help you, what are you going to do?

Background:

I am a journalist with a degree in English and Medical Biology (and an unfinished MA in Corporate Communications.) I worked for several years as a clinical microbiologist. I understand medical science and I know how to conduct research.

Recommendations:

  • Better and definitive diagnostic testing for Lyme disease and its co-infections
  • Patients should receive information (much like they do with vaccinations) that the current testing for Lyme Disease is highly unreliable – they should be provided with steps on what to look for and what to do if tests come back negative and they still suspect that Lyme disease may be the culprit.
  • Better education on diagnose of the condition for physicians
  • Better education on symptoms and prevention for the general public
  • Better and definitive diagnostic testing for Lyme disease and its co-infections
  • Patients should receive information (much like they do with vaccinations) that the current testing for Lyme Disease is highly unreliable – they should be provided with steps on what to look for and what to do if tests come back negative and they still suspect that Lyme disease may be the culprit.
  • Better education on diagnose of the condition for physicians
  • Better education on symptoms and prevention for the general public
  • Standards of treatment established.
  • Required tick/Lyme training for any coach of a team that plays outdoors (soccer, football)
  • Required tick/Lyme training for anyone who wants a fishing or hunting license
  • Yearly testing for Lyme disease for anyone who lives in a high risk situation – hikes, lives near woods, has outdoor animals, etc.
  • Awareness on a State and Federal level that Lyme disease is an epidemic that is much more than a simple “summer flu” people are dying, children are getting very sick and all unnecessarily. There has to be public statements and support.

Pieces I have written about Lyme disease:

Parenting New Hampshire –

http://www.parentingnh.com/May-2012/What-all-parents-should-know-about-Lyme-disease/

(Also currently working on a “Parenting Children with Lyme Disease” article)

The New Hampshire Challenge –

Lessons Learned from the Flock – (search “Lyme Disease”)

https://simplethrift.wordpress.com/2013/09/12/lesson-852-lyme-disease-the-tests-are-in/

This is what Chronic Lyme looks like:

http://chroniclymelookslike.wordpress.com/

Community Chickens:

http://www.communitychickens.com/ticks-and-lyme-disease-in-chickens-jurys-still-out/

I am also working on a book manuscript of our family’s trials with Lyme disease in New Hampshire.

***

Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com

Also, join me on Facebook to find out more about the flock (children and chickens) and see some pretty funny chicken jokes, photos of tiny houses, and even a recipe or two.

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2 Comments

Filed under Living Tiny in a Big House, Uncategorized

2 responses to “Lesson 1120 – The current state of Lyme disease treatment in New Hampshire

  1. Pingback: “Did I . . .” – Kate Cures Lyme Disease and Lyme Disease Symptoms | Herpes Survival Kit

  2. hi there. I respect your knowledge. I recommend you reconsider the antibiotic approach. You’re killing your healthy gut flora, and allowing bacteria to thrive in the gut that feeds the LYME. Take a listen to this podcast – https://itunes.apple.com/ca/podcast/foundmyfitness/id818198322?mt=2 #13 on the page. it’s why the ketogenic diet works. the carbs enter the gut and are broken down by the unhealthy gut flora into neurotoxns.

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