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My Lyme Story

This year alone, 300,000 people will be diagnosed with Lyme disease, according to the US CDC (Center for Disease Control). Yet there is a huge void of public education about prevention and/or treatment, which is why I have decided to share my story, treatment, and resources. I hope my story can help others avoid the pitfalls of the medical establishment when it comes to Lyme tests and treatment, and/or use my story and these resources for what to do next or how to avoid this disease all together. If you suspect you or a loved one has Lyme, please see a Lyme literate ND or MD and get treatment right away!

One note about my “donate” button— these resources and my time (should you want to contact me directly for support) are given from my heart gladly! If you can help my medical costs with a donation that would be wonderful, but either way I will be very happy if by coming to this blog you can get some help for yourself or a loved one here.

I contracted Lyme disease in 2011, probably from a tick bite (although I never saw or felt one). That’s the bad news. The good news is that I am now greatly improving. Lyme disease imitates and can be misdiagnosed as many other diseases, including polymyalgia rheumatica, chronic fatigue, fibromyalgia, rheumatoid arthritis, lupus, Parkinson’s, recurring fevers, seizures, ALS, recurring rashes, chronic fatigue… the list goes on and on. Up until recently it was believed that the ticks that carry and transmit Lyme disease were only in Connecticut and surrounding states; they are now found in every state, in many countries, and in Oregon where I live they tend to congregate most on the coast and in the gorge.

Contrary to popular belief, you do not always feel the tick or the tick bite, and you do not always see a rash after a bite. It’s important to know that even if you get tested for Lyme disease, the tests are up to 50% inaccurate. It’s important to get on a three week course of antibiotics right away if you suspect you have been exposed to the bacteria that causes Lyme because it is much, much, much easier to get rid of in the early stages.

Following an alarmingly high malarial type fever and a sudden seizing of all my joints, I went to directly to my MD and asked to be tested for Lyme. Despite that smart move, I was misdiagnosed here in Portland Oregon because the doctor I saw, Janelle Guyette, neglected to tell me that Lyme tests are highly inaccurate and do not rule out Lyme. It’s possible that she was not informed about the accuracy of the tests, and I am sure her intentions were good, but in my view a doctor should to know and inform patients if a test has a low accuracy rate and that, in addition, you are very unlikely to test positive at the onset of this disease. There is still a pervasive myth that you can’t get Lyme in Western states, which is absurd because I know a lot of people who unlike myself did not travel out of state before getting Lyme (I, however was in Massachusetts, Vermont, and California right before I got sick, but never saw a tick or got a telltale rash). When my tests came back negative for Lyme, despite my many obvious Lyme symptoms, I was treated instead for polymyalgia (which means “everything hurts”) with steroids. Steroids are exactly what you must not take in the case of Lyme because it lowers your immune system, thereby increasing the chance that the bacteria will be able to invade even more difficult areas of the body to remove it from. I spent 5 months so debilitated I could not get out of bed. As a former mountaineer, I could never have imagined that walking up or down a set of stairs or pouring a glass of water could seem tougher than ice climbing.

Enter the Portland Lyme Support Group. Best phone call I ever made. If you are in other states, I encourage you to do a google search for Lyme support groups in your area. Once I was connected with a Lyme literate doctor, Dr. Patrick Chapman here in Portland (unfortunately he is not focusing on Lyme at this time, but he is a great naturopath), it took me an additional 3 months on antibiotics and antibacterial herbs to begin functioning, and then an additional year and a half of antibiotics and herbs off and on to continue functioning, with debilitating relapses now and again. Besides a pervasive candida infection from yeast overgrowth I also developed gallbladder and liver problems from the antibiotics, the latter of which seem to be resolving with injections of phosphatidyl serine and fenugreek of all things (!). I am currently doing fairly well using many antibacterial herbs, detox and immune building protocols, which I list below. I also saw a chiropractor in Vancouver, Washington, Dr Jim Whitmire, who does very alternative “energy” medicine for folks with Lyme infections – controversial and not particularly scientific. I am pretty leery when it comes to approaches like these but he does seem to have helped many people with Lyme, including myself.

Had the doctor I first saw when I was alarmed by high fevers and terrible joint pain either treated me for Lyme right away, or at least let me know she didn’t actually know anything about Lyme, which is clear in retrospect- chances are my whole ordeal would have taken about 28 days of antibiotics to resolve. Unfortunately, because it was five months before I got a correct diagnosis, I was infected in my joints, ligaments, heart, brain and nervous system by the time I began treatment. Not only has it been difficult or impossible to function for a significant part of the last 4 years, I have also spent easily $40,000 out of pocket (and I have health insurance!) to try to find solutions. As an independent working musician, not only was that an incredible amount of money to spend, but there was also very little coming about in. It pays to be informed and to treat early!

Update: October 2016

On the positive and very hopeful side, for anyone who is reading this who has Lyme, great effort has resulted in great payoff and I really am feeling about 85% better at this point on most days. Strides are being made in treatment and “Lymies” everywhere are eager to help each other out with the information they are gathering, which is at a much quicker rate than the medical community because its through the constant trial and error of more than 300,000 people! I recently found out that I have several co-infections (ticks can transfer more than one serious disease at a time) which I am also being treated for. It’s common for people who are not diagnosed in a timely manner to have some hard times ahead, but hopefully there won’t be any more significant relapses.

Making lemonade out of lemons: I am happy to serve as a resource for more information, hoping to be of help since I have suddenly become something of an expert. Prevention and information are the best steps you can take, so read on! The earlier you get treated, if you do get a tick bite, the more successful the treatment. Few doctors on the West Coast and elsewhere are “Lyme Literate”. Many of the tests for Lyme are inaccurate (anywhere), although DNA connections seems to be the best and most accurate as of now. It is very important that you contact a Lyme disease specialist for diagnosis. Regular doctors are NOT TRAINED in this complicated area of medicine. I myself suspected Lyme disease immediately after a malarial-like fever and was inadequately tested and was misdiagnosed with polymyalgia which led to a five-month delay in proper diagnosis and treatment (and I couldn’t play guitar or piano for months…or do anything else either.) It’s been four years and still counting, although I do seem to be really improving now.

Treatment and Resources

The things have that worked best for me were/are:

1) Seeing a Lyme Literate Naturopath. MDs are under pressure to not diagnose Lyme– watch Under Our Skin, a fascinating documentary about the destructive politics of Lyme treatment in the US (link).

2) The Portland Lyme Support Group

3) Antibiotics (with probiotics of course)

2) Banderol and Samento are the herbs that helped me most in conjunction with serrapeptase (an enzyme that breaks down the biofilms that the bacteria use to hide from your immune system and anti bacterial herbs and drugs). These are frequently prescribed for Lyme and co-infections. Link.

3) MAH (Major Autohemotherapy/Ozone treatments). This is meeting with a lot of success for many Lyme patients. There are a number of ways to safely get Ozone into your body to kill off the bacteria. Some applications of this treatment are more expensive than others. Here is one site’s explanation:

http://www.chunginstitute.com/Chung_Institute_of_Integrative_Medicine/Major_auto_hemotherapy.html

4) Natural anti-inflammatories: fish oil, Astazanthin, Meriva (curcumin)

5) Far Infra-red saunas

6) Heavy metal detox (this surprised me in what a big difference it made).

I also did a 30 day course of fluconazole and nystatin that may have helped a lot. Harrod Buhner (http://buhnerhealinglyme.com/) has a very thorough website and information about other herbs and protocols which also have been helpful to me.

Dr. Marty Ross has a remarkable amount of information on his site: http://www.treatlyme.net/. He also has many youtube videos explaining what treatments are working best in his clinic.

I have recently heard of Hyperthermia treatments which are meeting success. If anyone reading this hears of an inexpensive, or less expensive place to do this safely please let me know and I will share it on this site. Here is one person’s story: http://www.publichealthalert.org/-wholebody-hyperthermia-treatment.html

More Resources, Lyme Organizations and Info

More resources if you’d like more information:

http://www.cdc.gov/lyme/

http://www.npr.org/2012/05/25/153709186/tick-talk-lyme-disease-under-the-microscope

Portland Oregon Lyme Disease support Group: David Johnson
503-625- 7033
very nice guy and very informed, good resource for Lyme Literate doctors.

ILADS

Lyme Disease.org

Diagnosing Lyme Disease (and/or whatever else is going on).

Lyme often travels with one or more other infections and other classifications of medicine may be be required.

Other tick-borne infections and other chronic stealth infections – as well as certain conditions

that can hold us back – are discussed here.

27 REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR – (and why a “CDC” positive test is so unrealistic)

What ILADS is and WHY you need an ILADS-educated, Lyme Literate Doctor – starting with assessment/evaluation.

Other Lyme and TBD (tick-borne disease) organizations:

Lyme Disease ASSOCIATION

Tick-Borne Disease Alliance

Lyme Research Alliance

Treat The Bite

lymeade.org: For support in living with and getting through Lyme Disease

The state discussion groups this link: http://www.lymedisease.org/resources/support.html

Several other doctors that specialize in the Portland OR area who specialize in Lyme:

Dr. Werner Vosloo, ND, MHom

Brooke Bodeen, N.D.

Tom Messinger ND

Satya Ambrose ND

Lyme Documentaries

Under Our Skin
Award winning documentary “Under Our Skin” about Lyme disease – important to watch!!
Watch here!

Under Our Skin sequel

Donate

Any help toward my $40,000 bill would be deeply appreciated.



 


Playing for Change

“Connecting the World through music.”

A decade ago a small group of documentary filmmakers set out with a dream to create a film rooted in the music of the streets. Not only has that dream been realized, it has blossomed into a global sensation called Playing For Change, a project including musicians of every level of renown, that has touched the lives of millions of people around the world.

While traveling the world filming and recording musicians, the crew became intimately involved with the music and people of each community they visited. Although many of these communities had limited resources and a modest standard of living, the people in them were full of generosity, warmth, and above all they were connected to each other by a common thread: music.

Out of these discoveries, the Playing For Change Foundation was born and made its mission to ensure that anyone with the desire to receive a music education would have the opportunity to do so. The Playing For Change Foundation is dedicated to the fundamental idea that peace and change are possible through the universal language of music.

Wondering what you can do to help us further our mission? Get involved or Donate

Visit playingforchange.org


NIRS – Nuclear Information and Resource Service

2008 marked the 30th anniversary of Nuclear Information and Resource Service (NIRS). We were founded to be the national information and networking center for citizens and environmental activists concerned about nuclear power, radioactive waste, radiation and sustainable energy issues.

We still fulfill that core function, but have expanded both programatically and geographically. We initiate large-scale organizing and public education campaigns on specific issues, such as preventing construction of new reactors, radioactive waste transportation, deregulation of radioactive materials, and more. Our international programs and affiliation with WISE (World Information Service on Energy) means that our network spans more than a dozen offices and programs across the globe.

NIRS relies on activism and contributions from citizens across the world to support our efforts for a nuclear-free planet and a sustainable energy future.

We hope you’ll help. Please join our e-mail Alert list and we’ll keep you informed about ways you can make a difference in our energy and climate future.

And please join Bonnie Raitt, Jackson Browne, the Indigo Girls, Ani DiFranco, The Fray, Bob Weir, Mary Chapin Carpenter, Guster, Ed Begley, Jr., James Cromwell, Graham Nash and other well-known and lesser-known but vital NIRS supporters and contribute financially and/or with your time. NIRS is a 501(c)(3) organization; donations are tax-deductible in the U.S. You can mail your contribution to NIRS, 6930 Carroll Avenue, Suite 340, Takoma Park, MD 20912, or donate via credit card by clicking on the Donate Now link at the top of this page.

If you would like any further information about NIRS, please don’t hesitate to call 301-270-NIRS (301-270-6477); fax: 301-270-4291, or e-mail to nirsnet@nirs.org

Visit NIRS.org


AVAAZ – A World in Action

Avaaz is a global web movement to bring people-powered politics to decision-making everywhere.

Avaaz—meaning “voice” in several European, Middle Eastern and Asian languages—launched in 2007 with a simple democratic mission: organize citizens of all nations to close the gap between the world we have and the world most people everywhere want.

The Avaaz community campaigns in 14 languages, served by a core team on 4 continents and thousands of volunteers. We take action — signing petitions, funding media campaigns and direct actions, emailing, calling and lobbying governments, and organizing “offline” protests and events — to ensure that the views and values of the world’s people inform the decisions that affect us all.

Visit avaaz.org


In Honor of Jennifer

A personal note on why I feel so strongly about healthcare:

My partner’s daughter, Jennifer von Beck, tragically died 5 years ago at age 23. She died when she was only 2 months pregnant from a blood clotting disorder called Factor 5, or Leiden’s disease. Blood clotting disorders are the #1 pregnancy related cause of death, and often the only symptom is sudden death.One in twenty pregnant women will develop Factor 5, yet women are rarely informed of the risk for it nor are they tested for it. Ironically, this disease is easily found by a simple blood test and is easily treatable with no risk to the fetus. If Jennifer had been informed about the risk and/or able to afford health care, she may have been diagnosed in time. However she did not have health care and was sent home without testing when she suspected something was wrong.

Of course we want to help others avoid this kind of devastating loss. There are several things you can do to help:

#1

Please, if you know anyone who is pregnant or is planning on becoming pregnant, make sure they are tested for blood clotting disorders! Again, a simple blood test may help avoid disaster.This is very serious,a matter of life or death! If we had known of this risk, we might still have Jenn and her baby.

Take Action Now

More information can be found, and contributions can be made at:

APS (Antiphospholipid Antibody Syndrome) Foundation of America

#2

Did you know that Only 5% of the military budget would be enough to provide health care for everyone in our country? Why kill people elsewhere instead of saving people here at home?

Over 18,000 uninsured people in the United States alone die each year from preventable causes, and 585,000 women each year worldwide die from complications from pregnancy. Please ask your senators and congress members to stop funding military aggression and to help lead the world towards sustainable healthcare practices by implementing them in the US.

It eases our loss to know that someone else’s life,or quality of life, may be saved. Here’s to hoping and working for national and world-wide health care and the avoidance of preventable tragedy. If you’d like to make a contribution in memory of Jennifer, one place you can do so is:

Coalition of Community Health Clinics in honor of Jennifer.

The Coalition does innovative work facilitating cooperation among 13 member clinics providing care to uninsured resident in the Portland metropolitan area.

In memory of Jennifer Nichole von Beck

Born 4/23/1982
Died 1/23/2006