Activism
- Lyme Disease Resources
- Award winning documentary “Under Our Skin”
- Playing for Change
- NIRS – Nuclear Information and Resource Service
- AVAAZ – A World in Action
- In Honor of Jennifer
Lyme Disease Resources and Information 2023
I have had lyme and co-infections for 11 years and hope that all I have gone through can
help others treat or avoid lyme disease and co-infections.
I am happy to give this information freely to try to help anyone reading this, but if you wish/are
able to donate any amount to my medical expenses ($150,000 out of pocket so far to try to keep
functioning), donations can be made here: Venmo – @anne-weiss-5 or PayPal below.
A great place to do research on Lyme Disease is at ILADS (International Lyme and Associated
Diseases Society). There are many tests available but some are much more accurate than others,
so you want to get the newest and most reliable info to prevent money spent on a wild goose
chase. It’s important to know that Lyme is just one of many tick borne diseases and you can
acquire more than one of these diseases from a tick bite at a time, so thorough research and
knowledge and quick action is key. There are many myths about Lyme– make sure you are
informed!
More Resources, Lyme Organizations and Info
CDC Lyme page (this is VERY LIMITED info– ILIADS is more reliable)
Tick Tock: Lyme Disease Under the Microscope
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 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.
Thomas Moorcroft, DO, & Darin Ingels, ND, just hosted a very informative positive Lyme summit on Dr. Talks. They mentioned a book by Dr. Neil Nathan (who also spoke) called Toxic, Heal Your Body which I have been listening to on Audible and find it very helpful. I have also been interested in Sinclair Kennally’s program and podcast “Your Health Reset”. And I was also recently told about drjessmd.com where there is a lot of free info. The thing that was especially good about all of these doctors is either they’ve all been very sick with Lyme and/or mold, and now they are totally better, or they have been very successful in treating people who are now all better. I spoke to some of these people in person (the folks who are sick) and it seems like a pretty sincere bunch of folks. I wish you all the luck in the world! I am partially in remission, have been in remission twice so I know it’s doable.
Other Lyme and TBD (tick-borne disease) organizations:
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.
More information on tick bite prevention.
Portland Oregon Lyme Resources (and surrounding areas)
For folks in the Portland OR area, the first place I suggest starting is with Anne Hill at Wisdom
Way. If she is not available, I would ask for a referral from her office.
Several other doctors that specialize in the Portland OR area (most do telehealth as well) who
specialize in Lyme:
Brooke Bodeen, N.D. (Eugene)
Satya Ambrose ND (Portland)
David Palacios (Lake Oswego, Oregon)
Valerie Ferdinand (Portland)
There is also a new clinic out in the Columbia River gorge (Corbett Oregon) where a friend has
had good luck: The Healing Order.
Portland Oregon Lyme Disease support Group: David Johnson
503-625- 7033
very nice guy and very informed, good resource for Lyme Literate doctors.
The things have that have overall 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.
2) The Portland Lyme Support Group
3) Antibiotics (with probiotics of course). This helped me at first but obviously did not cure me.
It did weaken my overall immune system due to the length of treatment. I think antibiotics are
very important when diagnosed early but should not be relied upon solely in longer treatment.
2) Banderol and Samento are the herbs that help a lot of people 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. I
did not do well on them but a lot of people do.
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. MAH has
helped me tremendously but has also been very costly. But for me its been the difference
between having a life vs lying in bed.
4) Natural anti-inflammatories Meriva (curcumin), bromelain, anti inflammatory diet
5) Far Infra-red saunas— can be extremely helpful. Many are available throughout the country
(rental per hour), or you can buy one for about $1000 at Therasage. They work differently than
regular saunas.Yes, this is a ridiculously expensive disease where most of the treatments are not
covered by insurance. That’s why its important to join ILIADS and join the fight against lyme
and the fight to have ot recognized!
6) Heavy metal detox (this surprised me in what a big difference it made).
7) Treatment for underlying infections- teeth infections and parasites (the latter required
specialized testing–I was directed to a parasitologist vs a general lab. I had gone through several
labs with no results and the specialized lab led me to answers).
I also did a 30 day course of fluconazole and nystatin that may have helped a lot. Harrod Buhner
has a very thorough website and information about other herbs and protocols which also have been helpful to me.
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.
Lyme Documentaries and Articles
Under Our Skin
Award winning documentary “Under Our Skin” about Lyme disease – important to watch!!
Yes, You Do Need to Worry About Ticks and Lyme in the Pacific NW
LymeSCI: Do Long COVID and Long Lyme Activate Mast Cells?
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 altogether. 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, presumably from a tick bite (although I never saw or felt
one). That’s the bad news. It took 5 months to get a correct diagnosis for lyme and several years
to figure out that I had a total of 14 co-infections, all vector-transmitted. The good news is that
although I go up and down, I am overall greatly improved. 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 most 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 or coinfections 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. 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 above.
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 likely 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 spent a huge amount 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 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 it’s 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) so 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.)
Update: January 2020
About two years ago I started using major autohemotherapy, an expensive but very useful tool
using Ozone. This approach made me functional but very broke! I purchased my own O-Zone
machine etc. which was helpful but still did not bring me back to full health. Out of desperation I
went to see Dr. Savely Yurkovsky in Chappaqua, New York, who does a strange (to me)
medicine called Field Control Therapy. I really thought he was a quack until I began to use his
method, which is energetic testing followed by homeopathy and several other things. I have
never had homeopathy work for me and am not inclined to new age anything, so I thought I had
wasted my remaining money until I went home, followed his protocol exactly and…. well I am
almost completely better, despite all these years of having Lyme and other tick born co-
infections. I just returned to see him on a family visit, we’ll see if I get to from 85 percent better
to 100 percent— I will report back in a few months! His website here: Field Control Therapy.
Update: April 2023
Last year I had a total lyme relapse. My biggest success this year (2023) was in having a
biological dentist take out infected teeth. This improved my Lyme symptoms by 85% at least!
The dentist who helped me is Dr. Pascal Nguyen in Oregon. I was unaware I had infected teeth.
I also did a deep dive into any other background infections (common in long term lyme patients)
and was treated for giardia which also helped. Field Control Therapy did not make the impact I
was hoping, although I plan to try it again once I raise the money, now that I have addressed gut
and teeth infections.
I wish you the best. I look forward to the day there is a simple solution for Lyme and I can edit
this page down to a few sentences. May you be heathy!
With care,
Anne Weiss
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
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
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.
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