Photos
Looking north from my porch in the hills of San Anselmo, I can see a wide stretch of the Loma Alto hills and the Terra Linda-Sleepy Hollow Divide, both of which form the back side of Lucas Valley.
I lived in Lucas Valley through some of 2005-2006, in a rustic cabin on a property my mother bought in 2004, which has since become somewhat of a family compound. From my cabin, I could walk out my back door, cross a small creek, climb up to an over-grown dirt road and journey onwards into the hills for hours without seeing another human being. On a clear day I could see San Pablo Bay, Richmond Bridge, and even the Bay Bridge. iPod blaring, traipsing through the forest and running westward along the ridge line, drunk on beauty, I often felt like I was in a too-good-to-be-true dream, floored to be roaming freely amidst such beauty. I knew enough to watch out for poison oak and to scrub down in case a tick had found its way onto me.
But I didn't really know how undetectable deer ticks are, especially the nymphs. Whenever I have been bitten by a normal-sized tick, I could feel something taking a chunk out of me, like a horsefly. It hurt. Not so with deer ticks.
And so, before I managed to roam down the southern side of the Terra Linda-Sleepy Hollow Divide into San Anselmo and Fairfax, I fell ill, not knowing that it was tick-related, not knowing that the family who lived next to us in Lucas Valley had all contracted Lyme Disease. After half a year of misdiagnosis and increasing pain and disability, I landed at Marin General Hospital with acute neurological lyme and severe ehrlichiosis. It took over three years of constant treatment and slow-healing before I could attempt some turtle-pace walks up to the first ridge line.
To this day, I will walk only on wide fire trails, avoiding grassy brush like the plague; and I no longer think deer are cute. Sometimes such hikes have proven to be too much for my body – making me feel like I just ran a marathon and sending me backwards into a relapse or intensification of fatigue, weakness, achiness, headaches, and such.
In the fall of 2009, after a hopeful and increasingly active summer and attempting some hikes along the divide, I found myself back in the hospital, on a month of IV antibiotics. I have gotten used to functioning at what feels like 50 percent of my previous energy levels, as if I aged 25 years in the past five; but a few times a year worse symptoms creep up on me and I go back on some form of herbal antibiotics or Docycycline, which usually clears things up for awhile.
And so I remain conservative in my energy expenditures. Mild to moderate exercise and hatha yoga have been essential for my sanity and healing process, but I dread crossing the line (often unknowingly) into the territory wherein over-exertion becomes a trigger for weeks or months of back-sliding into the badlands.
Given all that, an electric bicycle was really the only sane choice for me when I started to envision getting back up on the 'horse' (bicycle) last summer. I could ride again and meticulously control my level of exertion. The most important mission I set before my electric Yuba Mundo bicycle ("E Mundo") and myself this past summer was to make the trip from my house in San Anselmo, north on Butterfield Drive, up (and up and up) Fawn Drive, up Mission Pass, along the ridgeline until I could drop down into Lucas Valley, a few hundred yards from my Mother's driveway. This route cut nine miles off of the round-trip distance to her house by car.
I made that trip in September of 2010, but quickly realized that the mile of fire road that took me up and over the ridge behind my mother's property was not the quickest route, because it added elevation and wasn't a smooth ride. It was quicker and less stressful to descend into Terra Linda from Mission Pass, sail eastward on the Manuel T. Freitas Parkway bike lane, then head north on Las Gallinas, and west again on Lucas Valley Road.
At first, the ride seemed like an epic adventure. But now it is fairly routine and the time it takes to get to Lucas Valley flies by. Routine or not, it remains my favorite bike ride. It has good bike lanes and is beautiful. To boot, I get to see my family without using a gallon of gas and often come back with a basket full of produce from my mother's garden. If the lights go my way, the seven-mile trip takes 35 minutes. Much of that time I pedal along with the motor to be more efficient and to get some exercise, but I also frequently give my self breaks on the flatlands, where I motor along at 15-20 mph with no effort other than staying upright on my vehicle. On the hills of Fawn Drive and Mission Pass, I do have to peddle/work if I want to move forward.
On March 3, upon a spot of warmish weather and blue skies, I made the trip for the first time since early December. Luckily, my family members were at home and over kale smoothies we talked about emerging technologies and trends, while my niece and nephew built pillow forts. For the return trip my mother loaded me up with a huge bamboo platter, blossoming plum branches and a pumpkin.
As I came up over Mission Pass on my way home, I paused to appreciate the sun’s late afternoon glow on the green hills, grateful to live in such a beautiful place, grateful to be on a bike, grateful for my family, and especially grateful for my body’s ability to keep trudging on despite relapses of Lyme and other tick-born nastiness. I also thought of all the people in Marin with Lyme who may not be doing so well, and about all those who wander around the hills and flats of Marin with no idea that they can contract a disease that can easily incapacitate you in various ways to varying degrees for years and years.
Eileen Kelly
9:07 am on Monday, April 4, 2011
I am very worried about Lyme Disease.... We live on a hillside in San Anselmo at the Sleepy Hollow border with a bit of open space nearby. Our property is fenced in to keep the deer out of the garden areas, but ticks to migrate in. Cats, lizards and other creatures add to t hat migration. During the rainy season I'm extremely cautious when I plan to do any gardening because we have had a few tick bites over the years. I usually wear white clothing, put socks over pants, wear a hat, etc. and frequently check for ticks. And I do find them once in a while on my clothing while gardening. This Winter I've even found a couple close to the door of our deck and one on the door molding which was very alarming, especially because the area is in the clear. Unfortunately I got 2 tick bites this winter. I didn't realize it until they had already attached themselves. But I was able to remove them with tick tweezers. What's disturbing about these two incidences is that I was only my deck each time for not more than 5 minutes and obviously brushed against a plant. I Am VERY concerned about the nymph stage, which at that stage I understand they are the size of a poppy seed! I am looking into scattering diatomaceous earth along the perimeter of my property to try and minimize the numbers. I pray I do not fall victim to lyme disease.
Lori Tompkins
9:59 am on Monday, April 4, 2011
Hi Elieen, How very disturbing that you got bitten on your deck! Can you post a link to the diatomaceaous earth info. I haven't heard of that.
Sharol Oliver
10:20 am on Monday, April 4, 2011
I just removed a tick this morning. The doctor's office said not to worry about it. Unless the tick was engorged and in me more than 24 hours there was no chance of Lyme disease.
Lori Tompkins
11:56 am on Tuesday, April 5, 2011
Sharol, If you start feeling sick, exhausted, get any kind of rash (not just bull's eye), joint pains ... then you may think of taking antibiotics. The odds are certainly in your favor that the tick that bit you was not infected. But I don't fully believe the bit about the tick being engorged for more than 24 hours.
For me, I just felt exhausted first, like I had mono. I also had a pox like rash for a week (probably from the ehrlichiosis). Maybe 3 months after infection I got a series of horrible flu's and SERIOUS night sweats (again probably from the ehrlichiosis). In the very early stages (first few months), I just had the fatigue and the bumps/rash. No bull's-eye rash (which MANY PEOPLE DO NOT GET).
Bill
2:24 pm on Friday, March 2, 2012
don't believe them if they say it takes 24 hours or more...mine took 2 until I had a bulls-eye rash and even though I had the rash the Doc told me not to worry and I don't have Lyme's...
Kelly Dunleavy O'Mara
11:44 am on Monday, April 4, 2011
I do a lot of running in the watershed and I get really really worried about ticks from the tall grasses. Besides a once-over check after I'm done, I don't know if there's anything else to do?
Lori Tompkins
12:03 pm on Tuesday, April 5, 2011
Yep that is definitely I high risk activity when it comes to the possibility of getting tick bites. It's best to avoid tall grasses... but perhaps you could use some natural tick repellants, I don't know how effective they are, but are probably better than nothing.
http://www.selfgrowth.com/articles/discover-the-truth-behind-natural-flea-and-tick-repellents
http://www.health.harvard.edu/press_releases/How-to-protect-yourself-against-ticks
Davida Taurek
9:39 am on Tuesday, April 5, 2011
Lori, you touch my heart. Not just because of the dark road you've been on, not just because of the pain and debilitation you've experienced from Lyme, but because even as you gingerly walk and ride down this path, you are still able to see the beauty surrounding you. May that beauty be the reflection of who you are. I am seeing you in that light.
Davida
Eileen Kelly
12:28 pm on Tuesday, April 5, 2011
Hi Lori, I wanted to provide you with some links regarding diatomaceous earth. I'll be buying some large quantities but haven't decided from where yet. I'd be happy to share more info with you when I do more research.
Diatomaceous Earth is composed of diatoms, which are tiny fossilized shells of marine plants. When ground up, these diatoms have the look and feel of talcum powder. However, to insects, this powder has razor sharp edges that cuts through the protective covering and enters the body.
Unfortunately it does kill the good insects along with the bad, but there is no perfect solution.
http://www.gardeniq.com/store/product/Diatomaceous-Earth,152,93.aspx
http://www.dirtworks.net/Diatomaceous-Earth.html
I hope you are doing well and I meant to let you know how much I enjoyed reading your story, although saddened that you've gone through so much pain and discomfort. Take care. Eileen
Cindy Ross
10:48 pm on Thursday, April 7, 2011
Thank you so much for writing this! I live in Fairfax and have been battling Lyme since October 2008 when I had what I thought was the flu. But then it morphed into the most horrendous, frightening neurological symptoms! The worst of it, however, was the denial and abusive treatment I received from about 15 different HMO providers who gave me all the "It's impossible because there is no lyme in Marin" spiel and tried to convince me that because I'm 50 something it was nothing but menopause induced "anxiety" that prevented me from getting off my "a**s" (yes that and far worse language was used!), getting out of bed and getting back to work. (I am not aware of a tick bite, but did have a rash on my back that I had ignored.) Thank God I finally found a great doctor in Sonoma County who put me on antibiotics for a year. I'm still not 100%, and I lost my job and my medical coverage to boot, but thankfully I'm much, much better. Again, thanks for bringing awareness, and may you have a FULL recovery!
Lori Tompkins
8:52 am on Monday, April 11, 2011
Hi Cindy, sorry to hear of your ordeal. It is horrible how little many doctors know about Lyme and equally debilitating tick-born 'co-infections' and how in their ignorance they make patients feel like they are crazy. My infectious disease specialist in Novato (within my Anthem PPO) understands that Lyme IS in Marin ... not just Borrelia burgdorferi but other strains of Borrelia as well. He tested me for Borrelia Hermsii (supposedly not in California) in 2009 and I was positive. He seems to fall somewhere in the middle of the Lyme wars (between ILADS vs IDSA standards http://www.ldsg.org/index.php?id=71) in terms of his understanding of Lyme and its treatment.
I wish you a full recovery as well. Am off today to see my 'Lyme-Literate' doctor in Santa Rosa ... to have him look at my puffy welty right hand. This symptom keeps re-occurring.
Cindy Ross
5:36 pm on Monday, April 11, 2011
Hi Lori, I bet we have the same doctor, or at least a doctor in the same practice, as mine's in Santa Rosa as well. They literally saved my life. Take care and I hope they figure out what's going on with your hand. Best, C
Lori Tompkins
12:53 pm on Sunday, May 1, 2011
Here's a WELL-WRITTEN story or account by a friend with severe Lyme and Parkinson's: http://www.lymedisease.org/news/touchedbylyme/695.html
Cindy Ross
1:58 pm on Sunday, May 1, 2011
I want to respond, but I'm almost speechless. I thank God every day that I'm much, much better than I was three years ago. But, boy, can I relate. Nobody else can describe this nightmare but someone who's been through it. PS I'm trying to stay positive, but DAMN those arrogant and incompetent doctors who make things SO MUCH worse with their denials and condescending "it's all in your head" attitude... (By the way, Thank you N, not only for saving my life, but for sharing your vision and giving me hope.)
Lori Tompkins
8:20 pm on Thursday, May 5, 2011
A good article about why Lyme is so challenging to diagnose and treat:
http://www.dailykos.com/story/2011/05/04/972856/-The-Mysterious-Case-of-the-Shape-Shifting-Spirochete-
Lori Tompkins
11:24 am on Thursday, November 17, 2011
If you know anyone who has Lyme and wants to participate in a Stanford Lyme study, they are looking for more subjects (as of 16 Nov 2011 they have 11 slots left). It's not treatment, just giving 2 vials of blood and filling out 2hrs worth of heath and quality of life questions. They give a $50 stipend.
http://www.lymedisease.org/news/lyme_disease_views/stanfordlymestudy.html
Cindy Ross
5:10 pm on Monday, December 5, 2011
I wrote this in response to an article in the Marin IJ, but I think it's appropriate for here:
My heart goes out to triathlete Hope Gelbach's niece who has Lyme
Disease. It should not take 70 doctors to diagnose, nor should someone
have to travel to India for treatment this debilitating infectious
illness.
It is true that Lyme Disease can be difficult to treat, especially if
it has progressed to late stages. However, the biggest enigma about
Lyme Disease is that the majority of Western doctors refuse to
diagnose, treat, or even acknowledge its existence, despite the reality
that Lyme is one of the worst health epidemics of modern times...
Cindy Ross
5:12 pm on Monday, December 5, 2011
Exposing all the reasons why those who purport to be healers are
ignoring the suffering of so many is beyond the scope of this letter.
However, my own experience with doctors in Marin County has been
similarly frustrating. Despite having all the "classic" symptoms of
Lyme: bug bite, rash, flu-like illness that morphed into progressively
worsening neurological symptoms, countless HMO providers dismissed me
as a menopausal hypochondriac with an anxiety disorder. (In fact, they
literally almost killed me.You don't prescribe psych meds to a person
with a brain infection!)...
Cindy Ross
5:14 pm on Monday, December 5, 2011
While I initially got better after finally getting treated with antibiotics by a private doctor in another county (at my own expense), I lost my job due to my illness, and along with it my medical insurance. When I had a relapse in June, it led to about 6 emergency
room and a dozen clinic visits. Now that I have Medi-Cal, I've also
been referred to several more specialists, and I'm back to being told
that, while it's possible I have multiple sclerosis, it must have been
a quack who diagnosed me with Lyme and it is more likely all "in my
head". I'm also being told that there is concern about prescribing
antibiotics because of "side effects" (though there is no similar
concern about benzodiazepines and other inappropriate medications).
I have resumed seeing the (expensive) private doctor, and a few days
into taking antibiotics, perhaps I'm slightly better. But, I'm also
worried because overall, after all this wasted time, I'm far worse than
I was a year ago.
I am not stupid, crazy, nor mentally ill, and it is unacceptable that
I, and so many others suffering from Lyme Disease are being denied the
treatment and care we need. Perhaps my next appointment will be with a
lawyer.
Cindy Ross
5:14 pm on Monday, December 5, 2011
Sorry...I keep getting cut off:
For further information, check out the documentary, Under our Skin, or
the Wellness Series lecture on Lyme Disease by Dr. Neil Nathan at the
Mendocino Coast District Hospital website.
http://www.hulu.com/watch/268761/under-our-skin
http://mendocoasttv.org/MCDHWellnessSeriesLymeDisease.html
Merlin
5:28 pm on Thursday, April 26, 2012
Last year, contemplating a trip up into the wilds of Humboldt County, I checked to discover that there is an incidence of Lyme Disease in that area. I asked my friend Dick Fagerlund, a nationally-known bug and IPM (Integrated Pest Management) expert what he would recommend to keep ticks at bay. He shared a herbal formula with me for that purpose, which I would be happy to share with any of you. Just email me if interested, merlin0707@gmail.com