MY LYME STORY

MY STORY - HOW I CAME INTO THE LYMELIGHT

How did I get Lyme? Where did I get it? What were my symptoms? How was I diagnosed.......

My story is long and complex, but like most late-stage Lyme cases, it involves a great deal of misunderstanding on the part of the mainstream medical community, over $200,000 in credit card debt to pay for my medical bills, dozens of doctors, hospital visits, and tests, more emotional and physical suffering than I ever thought I could handle, family drama, loss of years of my life, and a ton of ups and downs.

I hope I can help even ONE person who reads this who is sick with Lyme (but doesn't know it and, sadly, there is a high probability they don't know it - the average number of doctors Lyme patients see before getting an accurate diagnosis is TEN, and at this point the disease is drilled deep into your body), experiencing 'ambiguous' symptoms that mainstream doctors cannot diagnose, that I can save from experiencing losing years of their life. If someone had educated me earlier, or if any of the 14 doctors I saw over 2 years at top institutions like UCSF and other major hospitals had properly diagnosed me, I would have been able to treat this disease with a much better fighting chance. The longer Lyme goes undiagnosed, the farther it goes into all systems of your body, the more intolerable the symptoms become, and the longer, harder, and more expensive treatment is. And the more difficult remission is.

THE QUICKIE VERSION

I was not feeling well starting in late 2005 with a myriad of ambiguous symptoms, and became so ill by the fall of 2007 that I could barely function or walk to the bathroom and had to quit my job as a civil rights/human rights attorney. I had already been to over 14 doctors who couldn’t figure out what was wrong, completely dismissed my illness as made-up, or told me I had chronic fatigue syndrome, OR EVERY LYME PATIENT'S FAVORITE, you are just depressed or making it up. By July of 2008, I was finally correctly diagnosed with Lyme Disease and its other co-infections, Babesiosis, Bartonella, and Ehrliciosis. These co-infections are also transmitted by ticks, and it’s basically like having 3 more Lyme Diseases to fight. Hence, the extreme amount of disability experienced by very ill Lyme patients (most have co-infections and Lyme).

I started treatment in August of 2008 after 2 years of misdiagnosis and am still going; once Lyme goes late-stage (in your body more than a few months), it is very difficult, painful, and expensive to treat. Most difficult is how LONG it takes to eradicate this disease (or put it into remission)….2 years if you’re lucky, many more if you’re not.. Luckily, I feel like I can finally see SOME light at the end of this long tunnel.

I want to let those reading know I never saw a tick bite and never had an EM rash. Note, many people do not get the typical Erythema Migrans (EM) "bulls-eye" rash with a tick bite. This can be due to the fact that some people have darker skin and the rash does not show up (as is the case with me), the bite was on the head (I highly suspect mine was), and simply because the statistics show that many people do not actually get a rash. With no rash, it is very easy to never have seen the bite if you didn't see the tick (the nymph stage of the tick is often impossible to see with the naked eye). I also had a test telling me that I was negative for Lyme Disease. For many years, I had tossed it aside as a potential diagnosis, even though one friend told me every symptom I had matched that of her friend's mother who was incredibly ill with Lyme Disease. Only later did I find out that testing is highly inaccurate, especially with non-specialty labs, and there are many false negative tests. I later tested positive on a series of Igenex (Lyme specialty lab in Palo Alto, CA) tests confirming my diagnosis.

WHAT IS LYME?

I could write a book about the complexities of Lyme Disease (specifically late-stage Lyme Disease, which I have, the kind that disables you severely). There are many books on the complexities of Lyme Borreliosis Complex (more properly called, because it is not just Lyme but a complex of other co-infections as well). Lyme is transmitted by a tick. Yes, a tiny little BUG. It’s a bug; it cannot fly, and they are in every state in the country as confirmed by each State Department of health (despite the fact that doctors will tell you otherwise) and every continent except Antarctica. For more information, see the "Lyme Disease Prevention and Basics" page at the top left corner of my blog homepage.

I have no idea when I was bitten: most likely was bit by a tick between 2003 and 2005, not sure, and most likely in Northern California, where I spent endless hours mountain biking, climbing, hiking, camping, etc. Northern California is laden with ticks. One Lyme doc postulated that I was bit as a teenager. I have no idea when I was bit because I never saw the tick nor did I get the classic 'bulls-eye' red rash that accompanies some tick bites. Contrary to what most doctors believe, only 40-60% (estimated) of people bitten by ticks get the bulls-eye rash. People with darker skin like me often never see the rash. And if you get bitten on your head, and have a huge mane of dark massive hair like me, you NEVER see the rash.

Who knows when I was bit? It doesn't really matter once I knew what the culprit was. I started feeling things go wrong at the end of 2005. People can carry Lyme disease and exhibit no symptoms if their immune system keeps it in check. It is not really understood the mechanisms that contribute to late-stage Lyme and why it affects some and not others who are bit. Also, not all ticks carry Lyme. But the ones that do are dirty. By this I mean, many if not most carry co-infections Babesia, Bartonella, Ehrlicia, and even Mycoplasma Pneumonia. Most people who are very ill like me for years carry all the co-infections, which is basically like having 3-4 more full blown Lyme Diseases.

This is part of the reason people are so ill from this disease. Most people including most doctors cannot believe that this severe amount of illness and disability for so many years has been caused by Lyme Disease. And therein lies the great problem. "Are you SURE that Lyme disease is causing all that?" When people or doctors ask me this, I CRINGE. It's like a dirty little secret this disease, that is mushrooming into a horrible epidemic (it outnumbers the cases of HIV/AIDs and West Nile Virus) that mainstream doctors will not recognize, are mis-taught about in medical school (I have confirmed this with numerous doctor friends), and are unaware of most Lyme symptoms (Lyme is called the "Great Imitator" because it is often misdiagnosed as lupus, ALS/Lou Gehrig's Disease, MS, Chronic fatigue syndrome, depression, fibromyalgia, etc). Then patients like myself are disabled and sick and labeled as ‘nuts’ by doctors who cannot figure out what's wrong with us until 14 doctors and 3 maxed out credit cards later, I find an LLMD (Lyme Literate medical doctor) who runs the tests on me and does a clinical evaluation to find out I am glaringly positive for Lyme and all the co-infections by highly specialized blood tests AND clinical symptoms. (Note, Lyme is a spirochete-shaped bacteria that drills into joints, brain, heart, everywhere and hides so deep in the body, often hiding in fatty adipose tissue that it will VERY often evade blood detection in actual Lyme patients). I lucked out and got all positive tests. These co-infections mentioned above are all tick-borne diseases (TBD) and severely disabling bacterial infections that, with Lyme, when left unchecked in the body, cause extreme damage and infiltrate almost every system and part of the body, and yes, can even kill you.

If it doesn’t kill you, sometimes the delirium and sci-fi like symptoms are so torturous that you want to die of your own volition. And this is exactly what happened to my friend, Lindsay, 4 nights ago, who took her own life after 4 years of dealing with Lyme. She was 28 years old, living with her parents just as I was, and could no longer bear the excruciating physical, psychological, and neurological symptoms that plagued her while she laid holed up in her parents’ house for years, foregoing a normal life of a young person (I completely relate). This tragedy shocked me and broke my heart into pieces, and was actually the one thing that made me finish my blog.

People need to KNOW about this disease and what it does to people. The attention can then bring proper research, treatment, land clinical trials to fruition, and let patients be treated without being ostracized by doctors, and prevent people like Lindsay from getting so sick in the first place that she took her life. Lyme suicides are NOT rare. I know many people who have attempted Lyme suicide, and backed out.

Lyme Disease and Late-stage Disseminated Lyme Disease are VERY different. More on this later.

MY DETAILED STORY

WHAT ARE THE SYMPTOMS OF LYME?
The answer should really be what ISN'T a symptom? This disease manifests differently in everybody and the type of symptoms this disease creates are so widespread and honestly more hellish than anything I could ever even imagine. Here's a list of the ones that plague me:
• heart palpitations that make you feel like you are having a heart attack
• chest pain, inability to breathe or get oxygen to Lyme-infected heart and lungs
(a good portion of Lyme patients, myself included, have gone to the ER more than once for the above symptoms because it literally feels like you are having a heart attack)
• bone-crushing fatigue (as in sometimes you can barely make it to the bathroom or down the stairs)
• dental & jaw pain to the point you cannot eat anything cold or hard for days
• vertigo and dizziness that make you feel like the world is going up, down, swirling around, and someone gave you a bad dose of some hallucinogenic drugs and the experience never ends, sometimes the ground feels like it's moving up and down
• weakness
• fevers, chills, nightsweats (80% of the time I have one of these to a certain degree)
• endocrine dysfunction, which can cause disorders of thyroid and adrenal glands
• INSOMNIA, the kind where you take 2-3 sleeping pills per night and still only sleep 3-4 hours!
• excruciating joint, and muscle pain EVERYWHERE (to the point you cannot turn a doorknob or type a word because your wrists hurt so badly and it feels like someone is knocking a 50 lb. hammer directly onto your neck and spine)
• electric neuropathic pain that feels like you are being electrocuted
• migraines, headaches
• nausea, stomach pain, organ pain, inability to eat
• auditory and visual hallucinations
• extreme noise and light intolerance (think no music, sunglasses even at night, inability to watch TV for long periods of time)
• Rashes
• memory loss, complete and utter loss of cognitive ability (as in I put scissors in the freezer and got lost when my dad dropped me off at Whole Foods once, IN the store)
• short-term memory loss, confusion, word-finding difficulties, major visual disturbances (blurred vision, even had a herx so bad where the entire house was 'cloudy' and covered in fog and all I could see out of my eyes was a thick fog vision for 10 hours straight - scared the crap out of me),
• numbness and tingling in toes and fingers, inability to feel parts of your body at times
• major depression, anxiety, psychological manifestations of all sorts, panic attacks, irrational rage, and the list goes on...
• dizziness and lightheaded-ness, especially on standing, the spins, like a hangover x 20 but for weeks at a time
• Ringing in the ears, buzzing in the ears that makes you feel like you are hearing dolphins from thousands of miles below the sea
• Eye pain and blurred vision
• Extreme intolerance to heat or cold; especially freezing hands and feet and bum for some reason
• Shaking, tremors
• Seizures - the WORST thing ever. I've only experienced these a few times while on IV, and infusing too fast, and it was most likely a herx (die-off reaction) or maybe drug toxicity, but it was TERRIFYING, couldn't speak, stuttering, couldn't hear what my mom and grandma were saying, total confusion, shaking, then my body went limp and was extremely exhausted and unable to move, crying, and limp/weak for hours after. It was like I inhabited another person's body and felt I was about to die. SO FRICKING SCARY.
•Depersonalization, feeling like you are not present or in your body


The worst part of this disease is that your symptoms and level of ability to function can literally change by the day, the hour, even by the minute. Up, down, up, down.. I was on different treatment, addressing different co-infections, and when you ignore one, another creeps up. Then you need to knock that one down. Then Lyme creeps back in. You have to keep changing the game, the drugs you use because the bacteria get smart, and figure out what works. Then the treatment itself, like chemotherapy, makes you sicker than sick. Then you feel a day or two or even a week or month of improvement. Hallelulah!! Boom, then you're bed ridden for 3 days. It makes NO sense, it is not linear, and one just has to accept this as long as you know you're generally trending upwards.

I love my parents, but even after watching me battle this disease and learning all about it, they still ask me, "what happened? you were fine just 3 hours ago!" What happened? It's called Lyme. NO RHYME OR REASON.

One minute you're standing up in Target (after browsing around for only 15 minutes) and 3 minutes later you are scooting on your ASS down the aisle at Target while people stare at you because you can no longer walk or stand up without collapsing from weakness and they think I look totally healthy (yes, this happened to me and I had to scoot to the front and page my mom in the store to come get me, it was like being 5 years old again). Then you're crying in the car and have traumatic memories of Target. But I digress.

The rollercoaster of this disease is SO frustrating because you NEVER know what your body is going to do on any given day. For my psyche, it is torture. My body and soul get pulled and tugged up and down constantly, and all I know is that the IMMENSE uncertainty (will I be able to walk outside today? go to dinner with a friend? make a meal? Read? or flatline in bed with sunglasses on under the covers hoping i will die in my sleep?) throws my heart into a fearful melting; my spirit may be lifted briefly and then washed away by a terrible tidal wave for days, weeks, or months. Then I will feel better for weeks and amazed at how much progress I’ve made so quickly.


WHEN I WAS DIAGNOSED
I was diagnosed with Lyme Disease (which is more properly called Lyme Borreliosis Complex nowadays, because it is really so many other things than just Lyme) in July of 2008. I was ecstatic when I got the test results in the mail.

The test was ordered by Dr. Heyman, a brilliant University of Michigan doctor professor who worked with the famous holistic Dr. Andrew Weil and was an expert in chronic diseases. He spent, at our first appointment, 4 HOURS with my mom and his pharmacalogist, going through my three binders of labs/medical records that I brought, sitting with me explaining all the potential causes of my 'mystery illness.' He sent my blood to Igenex, in Palo Alto, CA the foremost Lyme Disease lab in the country. Most Lyme patients get their blood tested for Lyme via Igenex or another famous lab out East. Igenex is the gold standard, from what I understand.

I had been sick on and off for over 2 years prior to that and disabled to the point I had to stop working 8 months earlier. Finally, AN ANSWER!!! Lyme. Yes, a plan!! No more mystery. Treat the Lyme, and move on with life!! Woohoo, I thought. I had been to over 14 doctors in 2 years - specialists all over the country - lucky that my parents would fund my decision to seek out holistic, integrative, and traditional doctors to find an answer to what had been plaguing me since late 2005. I remember driving to the Rose Garden in Golden Gate Park just a few minutes from my place, and called my best friend Emily and told her the news. I was excited to enter this new chapter and end it quickly. I was anxious but hopeful.

Little did I know the treatment of this disease was THE most difficult, painful, and long thing I would ever do in my life.

WHEN I STARTED GOING DOWNHILL

Below I jump back in time to 2005 when the earliest symptoms started appearing, but I had NO idea they were connected to Lyme until later.

It was 2007 that REALLY took me down. Spring of 2007, I wasn't feeling OK. But I could still manage to function for the most part. Struggled through it, but I did it. Dizziness, vertigo spells coming and going. Weakness. Often lightheaded and tired after exercise and hikes. Horrible migraines that lasted weeks and really bad menstrual cycles. Fatigue getting worse. Really bad.

*Quick note: for those of you who don't know me, before I fell ill, I was a hyper ball of energy, passionate about everything, smiling, dancing, snowboarding, rock climbing, hiking, climbing mountains, traveling, surfing, volunteering, I was a Type A work hard play hard love life person. I co-founded a non-profit (www.sparksf.org) in 2004, finished law school, passed the California Bar Exam. I was not sitting on the sidelines of life. Then, I got sidelined and oh did my perspective of life change. I haven’t exercised in exactly THREE years.

Summer 2007: I start a new job, dream job at a non-profit law foundation, litigating fair housing and predatory lending in Silicon Valley. My commute is 3 hours roundtrip and I work long hours, and am under a GREAT deal of stress. I LOVE the job, but I was overwhelmed, huge caseload. Took on so many cases, delved into a whole new area of law, learning about state and federal litigation rules, depositions, trial, settlement conferences, arbitration, plus federal banking laws, state and federal housing laws, was saturated with so much new information that I was having nightmares about it many nights. The first week I could barely make it to to work all 5 days. I couldn't get out of bed the first Friday and had to call in sick. I couldn't WALK to my bathroom without using EVERY ounce of energy in my body. I knew something was wrong.

Tons of visits to numerous endocrinologists and chronic fatigue specialists and naturopaths and homeopaths. This progresses until I find out I have some endocrine problems, hypothyroidism (which can make you really ill, and extremely fatigued), adrenal fatigue, and all kinds of imbalances in my hormones that were making me lose weight really fast, sleep 16 hours a night on weekends, barely able to do anything on those weekend days, trudging through work, a complete insomniac, heart palpitations, chest pain, an emotional wreck (I remember getting a ticket on Cal-train on the way to work one day and getting off the train and hysterically crying like a baby), and, most detrimental to my career, totally unable to work my brain.

It was like a huge fog swallowed my brain slowly and pretty soon I was at work all cracked out on meds the doctors had tried me out on (some various unpleasant protocols for vertiginous migraines), until I was spending afternoons under my desk having to lay down and my colleague was asking if she needed to drive me home.

Then came the kicker - I thought one of our MANY cases had settled. I was sure of it. I remember reading an email from our assistant counsel. At our weekly meetings to review the status of all cases, I mentioned this case had settled. They in fact, had not. Nobody had settled. I don't know if I was running on 3 hours of sleep or had completely lost my short-term memory, but I knew I had to take medical leave and figure out what REALLY was going on with my health. My boss, an AMAZING woman with a heart of gold and extreme passion for helping the underserved, took over for me on many projects despite the fact that her workload was already saturated. Sadly, she was in fact getting sick with a 'mystery illness' at the same time as well.

I spoke with her and we agreed it would be best to take medical leave, rest, go through all the doctors I needed to figure out what was wrong. I said I'd be back in 1 month, no problem. She said take 3 months, do what you need to get healthy, and then come back. I never went back. They held my job for 6 months, but by that time, I was sicker than I was before and still had no REAL answers. I was DEVASTATED. My good friend and ex-boyfriend, Fred, had helped me realize that I had to quit, I had to give up the first of many things I would be giving up. Giving up my dream job was crushing to me and my sense of where I belonged in the world. Only 2 years out of law school, 31, and already disabled? I cried for days but knew it was the right thing to do. I felt my goals and dreams of practicing civil rights and human rights law and helping those with no voice swirl down the drain.

In this time, sadly, my boss, found out her mystery illness was pancreatic cancer and she quickly underwent treatment. This amazingly generous, giving, and intelligent woman, who I never saw again after our conversation in November 2007, in her 30's, with two little kids and an adoring husband, passed away in the spring of 2008 from pancreatic cancer. More on this amazing attorney, mother, and human being.

After I quit my job, new symptoms began to appear in 2008, for example, a 6-week bout of excruciating joint pain and fevers. I'd never experienced ANYthing like it in my life. I could barely move my wrists, or open a door know or even cut some butter. I was staying with my parents in Michigan and my mom held me while I just cried hysterically waiting for the pain to pass. It was like someone was sledgehammering my joints. That passed but my fatigue and other symptoms were still lurking heavily.

FLASHBACK

Flashback to late 2005:

Finished and passed the CA Bar exam in the summer, flew to South America to travel with a good friend to celebrate, was outside in the mountains of Peru and Ecuador and ended up with over 80 bites on my legs that took weeks to subside. Never though anything of it. Personally, still think I got bit in Northernn CA. Returned and had a hard break-up with a boyfriend after my return to the U.S.

Started working as an attorney, but experienced strange nightly panic/terror attacks out of nowhere. Had NO idea where these were coming from but I woke up hyperventilating many times, almost to the point I would pass out. Fingers and arms would get tingly and numb. Thought it was related to stress, or break-up, it passed after a few months. (You will see why this is Lyme-related later).

2006 UP AND DOWN

I felt ok after the panic attacks passed but I did get these weird transient vertigo migraine things that lasted days occasionally, coming and going and scaring the shit out of me. My neurologists always attested them to residual migraines from the dissected vertebral artery (head trauma) I endured from a chiropractor in 2002 (which nearly paralyzed me, more on that below). They didn't come too often. I was doing great in February 2006, I remember going to Tahoe with my sister, brother-in-law, niece, and snowboarded hard all day, drinking at night with the crew of friends up there. A few weeks later I had to take an antibiotic - Flagyl - for stomach issues. It was a 10 day-course, but the day after I stopped the meds, I IMMEDIATELY went into a horrendous downward spiral where I woke up and LITERALLY felt like I was falling to the ground and being pulled down to the left.

Any time I moved, the world spun in circles, went up down, I felt like throwing up, felt like my head wasn't screwed on, a horrible sense of disassociation from my body, dizziness, vertigo, confusion, anxiety, nausea. The only think I could liken it to was the symptoms after I had the dissected artery in 2002 and ended up in the ICU for 7 days. I was fatigued and couldn't even move from my bed. When my eyes moved, the world went up and down. There was no way to describe what I was feeling other than it felt like I had overdosed on some horrible hallucinogenic drug. My friend Nicole was visiting from out of town and I felt o horrible that during her visit, I couldn't get out of bed. She came to the ER with me on her short visit to SF. That would be the first of MANY visits to the ER with many friends.

What was happening to me? I could barely stand up straight that day, it was so odd and SO scary. I could only hypothesize that it had something to do with my old dissected verterbal artery injury. At the ER, I told them I was worried about the artery and could it have re-dissected? Since so little is known about follow up of dissected vertebral arteries (one of my neurologists told me I was 'famous' for having that injury as it was so rare...gee thanks), it was unclear to the ER docs if had re-dissected the artery. But since I didn't do anything lately (yoga poses, car accidents, tumbles down the mountain) that would have likely reinjured my head, the chance was unlikely. They didn't want to subject me to more CT scans of my brain since I'd already had way more than necessary for my age. They said to follow up with neurologist but that there was no immediate danger.

Great, on the one hand. But this thing, this monster of weirdness that came out of NOWHERE, put me out of work and in bed for 3 weeks, and took over 6 MONTHS to subside. Still wasn't diagnosed with Lyme, just living in some weird limbo of illness. I lost 15 lbs., could barely eat, and was nauseated and exhausted. I went to every doctor, got tested for every possible scenario, and was then told by the top migraine specialist/neurologist at UCSF that I was experiencing rare vertiginous migraines, most likely as a residual from the artery incident. OK, I thought. So they thought putting me on some migraine medications including Diamox (a medication for high altitude) would do something to alleviate the imbalances and problems in my head. NOPE, they made me sicker. I was so ill on those meds, the side effects and the combination of strange medications made my sensitive and weak little body even more sick.

I finally went to an amazing naturopathic and homeopathic doctor who found out via testing I had heavy metal toxicity and some other issues that she addressed with holistic treatments, homeopathy, and nutritional supplementation. I got better about 6 months later, to the point I could function, work, exercise. But I was never really back to normal.


FATE STEPPED IN

Mid-2008: My mom was flying back from San Francisco (where I live) to Michigan and randomly struck a conversation with a woman next to her on the plane. My mother makes conversation with almost everyone she meets, she is a microbiologist, but an entrepreneur at business woman and social butterfly at her core. During this time (early 2008), I had been diagnosed, by one of the top chronic fatigue syndrome (CFS)/hormone balance centers in Los Angeles, with CFS/fibromyalgia and adrenal fatigue (which is another condition that mainstream doctors don't recognize or know how to treat). MORE on adrenal fatigue below.

Anyhow, as fate would have it (and there is no doubt universal forces were at work here), the woman's daughter-in-law was so ill for over a year that she had to quit working, could barely function as a human being and had seen an amazing integrative doctor, Dr. Andrew Heyman in Ann Arbor, Michigan, who worked with the famous Dr. Andrew Weil and who also had a medical degree and professorship at the University of Michigan. I didn't see Dr. Heyman right away, but went to him a few months later, when I kept getting worse and had to go stay with my parents. He was my angel, he diagnosed my Lyme and brought my illness a NAME!


Lyme treatment: BEGIN!! August 2008

After the brilliant and compassionate Dr. Heyman diagnosed me with Lyme FINALLY in the summer of 2008, he told me I had to see an infectious disease Lyme specialist in SF, where I was living. Dr. Heyman, in private practice and faculty at the University of Michigan Medical School, sat with me for almost FOUR HOURS at my first appointment (can you find ANY doctor who will do that nowadays?), parsed through my hundreds of medical records and labs and symptoms with his pharmacologist. They ran a number of other tests and posited theories. Their Lyme theory was correct. He confirmed what I heard already through the Lyme patient grapevine - that there were only 2 labs in the country that had accurate lab testing for Lyme Disease, one of them being the famous Igenex Labs in Palo Alto (where almost every Lyme patient in CA gets their Lyme labs done; other labs are useless). After my labs came back blaringly positive from Igenex in July 2008, I was ecstatic and ready to tackle head on this 'thing' that consumed my life for almost three years, and now had a NAME. LYME!!!!!!!!!

SWELL to the beginnings of HELL

I got in with Dr. S, in San Francisco, one of the most famous Lyme specialists in the world, who had treated numerous celebrities including Amy Tan, author of the Joy Luck Club (http://www.canlyme.com/amy.html). I didn't know anything about Lyme; Dr. S told me we would START by treating the co-infection Babesia. Later on, we'd get to other co-infections and the Lyme. He explained what herxing was, which I'd already read about online. I took my meds, went home, and waited for the fun to start. The first few weeks were rough but not terrible, and then I was slammed. The more Babesia and Lyme I killed, the more I herxed (see definitions on side of blog) and the sicker I became.

I went back to Michigan for a few months to stay with my parents, and was so incredibly ill I had to CRAWL, literally, to get to the bathroom 5 feet away. My mom would feed me while I laid on the ground. I didn't get OUT of my pajamas OR leave the house once in 3 weeks. I was more exhausted than I ever imagined possible. It felt like a 400-lb. gorilla was literally crushing me and I had to push him off with my little strength to move. I had vertigo, migraines, and crazy neurological symptoms (remember a herx is often an exacerbation of the symptoms to very scary degrees as the bugs die off and release toxic cytokines that are trying to leave your body) where I would just lay in bed with my hand on my head and see crazy visual blurs bombarding my head.

I laid in my pajamas at the top of the stairs and my mom would spoon feed me and put water in my throat. It was AWFUL. Awful doesn't even begin to describe the surreal hell I lived in at that time.

Again, I thought Lyme was no big deal like most of society, just a disease that you treat with some antibiotics for a few months and then on your way. I was so wrong on so many levels. In my worst nightmare, I never would have imagined that the treatment and and the process of eradicating this disease was worse than the disease, so much so that I would call it "a grueling triathlon that lasted years" an understatement; it was more like a chemotherapy of mind, body, spirit, and existence that lasts years and goes up and down a few thousand times, sometimes within a day, or a week, or months, a waterboarding of every piece of your soul, a shredding of your body, an annihilation of your cognitive abilities, a torture chamber of the loneliest and scariest places you have ever visited in your mind. Nobody holding your hand, nobody knowing what to tell you, just laying in a hospital bed or bed at home wondering if you are in fact dying, and if you're not dying, could God or the Universe or someone up there just kill you now. A hell I would NEVER imagined possible.

I've endured a lot of physical pain. I've been an athlete all my life, enduring back injuries, falls, car accidents, concussions, and even breaking my pelvis in a snowboarding competition in 2002. Later that fall, my first year of law school, I saw a chiropractor one evening, passed out in his office, ended up in the ER and found out he had dissected my vertebral artery - torn the artery in the back of my neck connected to my brain. I was lucky I didn't have a stroke, get paralyzed, or die from that incident. I was rushed to the ICU and on blood thinners and heavy narcotics for a year. The physical pain is hard to deal with, but when you have your mind, you can get through that. But add to that physical pain, the inability to often have a clear mind, and the game of surviving this disease becomes akin to climbing Mt. Everest.

Whenever anyone asks me about my symptoms, I get too irritated to list them all and go through this enormously convoluted and complex story. Sometimes I describe it like trying to climb Mt. Everest, getting close, sliding down in some painful fashion, trying to climb it over and over and over. And over. And over. And over and over and over again. And you’re still not there.

Back to being at home in Michigan…I couldn't sleep, I just lay there being tortured by monsters in my brain from the die-off (herx) from the treatment. Once I told my doctor that it felt like my head had to vomit all the time; he said that was a great description of what his Lyme patients felt. Then the depression. Oh boy nobody told me about this. I had joined the Lyme support group online and went to an in-person meeting once in San Francisco, but I had NO idea that complete mental breakdowns where you throw yourself on the kitchen floor crying for HOURS EVERY night for months were part of the herx. Dr. S never told me!! I called his office because it was so bad I felt like I was losing it and he never called back. That was UNacceptable. So I changed docs.

Bottom line: I was herxing WAY too hard. I didn't know though. From the millions of Lyme support group posts I read online and research I had done, I understood that the name of the game was herxing, which meant torture. Think chemotherapy of sorts - pain means gain. But then even Dr. S told me this was too much herxing, which basically means the drugs are killing off the disease at SUCH a high rate that my body couldn't keep up with getting rid of it (this is why 8 million detox supplements and routines are essential).

Then you're just recycling dead bugs (Lyme and co-infections) in your blood and getting sicker. It is dangerous.


*Side note on adrenal fatigue for those interested: Chronic fatigue syndrome (CFS)/fibromyalgia are, IMO, umbrella terms to being very ill and not knowing why. A host of reasons can cause CFS and adrenal fatigue was one of my causes. Adrenal fatigue was devastating to my immune system - I slept 16 hours a night and could barely stay awake 7 hours a day or exercise without feeling like collapsing. My emotional state was a mess and I could remember NOTHING, precipitating the need for me to take medical leave from my highly coveted job as a civil rights attorney. Adrenal fatigue, FYI, is an imbalance, brought on by stress most often, toxicity, environmental pollutants, and other factors, that prevents your body's ability to make cortisol. Cortisol is what you need to literally get out of bed in the morning. Cortisol is what is released during the human "fight or flight" phenomenon. Adrenal fatigue is a complex condition with tons of books written on it. I don't want to go to deeply into it, so I'll refer you to some great sites on the subject: Dr. Wilsons' Adrenal Fatigue Site, here. Most common symptoms of adrenal fatigue are: unrelenting fatigue, horrible response to stress, exercise intolerance, depression, anxiety, insomnia, poor memory and concentration, low blood sugar, dizzines and low blood pressure.


Next Route: Medicinal Herbs with Lyme Naturopath

After experiencing 3 months of literal torture on every level in every cell of my body, I saw Dr. A up in Santa Rosa in October 2008, who had been HIGHLY recommended as the best Lyme doctor who would combine holistic and traditional (drugs) treatment. I saw him, and he wanted to take me off the meds and let my body play catch up. He told me I was too sick from the herxing, and needed to let that toxic sludge get out of my body, and put me on herbs for a while, and then return to drugs again when the time was right. Although I am VERY holistic in my approach to medicine, and actually am not a huge fan of Western medicine’s pill pushing regime, I was still apprehensive about these herbs. Herbs? That will kill these infections?

I took the leap of faith. His office was PACKED with very ill Lyme patients from all over the state, and he was compassionate and LISTENED. He also put me on a number of adjunct holistic protocols to heal my gut, work on my methylation pathways (a genetic defect in detoxification process that most Lyme patients have), address any parasites, heavy metals, or other toxic elements that invade Lyme patients so easily because our immune systems have been totally whacked down by the Lyme. That is HOW powerful this disease is. Herbs that you could slowly work up in doses. I herxed on the herbs. A LOT!! Holy shit, who knew? They were working, I did this for about 6 months. I started feeling better! Then the Lyme started creeping in, and the herbs were not powerful enough. I needed the big guns, drugs and then IV drugs and my body knew it.

Dr. A put me back on oral antibiotic treatment for Bartonella, made some progress in the summer of 2009. Back and forth between Michigan and San Francisco I went. I returned to SF in July of 2009 right after m 32nd birthday. The treatment I was on became unbearable. I was in so much pain my friend carried me up the stairs and stuck a Vicodin in my mouth and my oxygen tank in my nostrils. My Babesia was back (I could tell because its telltale symptom was air hunger, literaelly feeling like you are choking and cannot breathe). On my flight to SF, I thought I was going to die. Plane trips are notoriously hard on Lyme patients because the hypoxic environment. Babesia makes it feel like you cannot breathe.

Got back on Babesia treatment (Western drugs) and within a week I was OFF my oxygen tank and felt amazing. As I said, it’s a balancing act with the co-infections and Lyme.

NEW LIFE!

Switched to Dr. G in July 2009, partner of Dr. S, and she put me on a Babesia and other protocol and I felt great for a few months. I was driving around, getting groceries, going on dates, even went to a bar once and sang on stage! Who WAS this girl? I hadn’t seen her in years. It was amazing to feel parts of my old self re-emerge. One day I walked 50 minutes, which is HUGE for me. HUGE!!! I was having dinner with friends, still taking my naps and needing a ton of rest, but really functioning at a level I had not in over 2 ½ years. Was ecstatic, and then went to Michigan….

Stayed there for about 11 months…saw Dr. J out east, got my picc line put in my arm/heart on March 1, 2010. 2010 was very rough. VERY rough. IV is not easy and very intense. I will elaborate more on that in the blog….but I’m back in San Francisco now, as of September 10, 2010!

UNDER CONSTRUCTION...
ADD SSDI law school case....
previous tx detail,
Michigan,