Archive for Re-Posts


// December 2nd, 2010 // No Comments » // Ashley's Blog, Links To Other Lyme Site Posts, Re-Posts,

Ehrlichiosis (HME) was originally thought to be only an animal disease. It was described in humans in 1987 and is now found in 30 states, predominately in the southeast, south-central, and mid-Atlantic states, Europe and Africa. Anaplasmosis (HGE)in humans was first identified in 1990 in a Wisconsin man. Before that it was known to infect horses, sheep, cattle, dogs and cats. It occurs in the upper midwest, northeast, the mid-Atlantic states, northern California, and many parts of Europe. Studies suggest that in endemic areas as much as 15% to 36% of the population has been infected, though often it is not recognized. (1)

Diagnosis is limited by our current ability to test for only two species. Ehrlichia parasites multiply inside host cells, forming large mulberry-shaped clusters called morulae which doctors can sometimes see on blood smears. The infection still can easily be missed. The doctor may suspect ehrlichiosis/anaplasmosis in a patient who does not respond well to treatment for Lyme disease. (1)

Ehrlichiosis is caused by bacteria that belong to the family called Rickettsiae. Rickettsial bacteria cause a number of serious diseases worldwide, including Rocky Mountain spotted fever and typhus. All of these diseases are spread to humans by a tick, flea, or mite bite.

Ehrlichia bacteria can be carried by the Lone Star tick, the American dog tick, and the deer tick, which can also cause Lyme disease. (2)

There are two kinds of ehrlichiosis, both of which are caused by tick-borne rickettsial parasites called Ehrlichia that infect different kinds of white blood cells. In HME (human monocytic ehrlichiosis), they infect monocytes. In HGE (human granulocytic ehrlichiosis), they infect granulocytes. HGE was renamed anaplasmosis in 2003. Ticks carry many Ehrlichia-like parasites that have not been identified yet. It is likely that the lone star tick transmits HME and that the deer tick transmits HGE. (1)

Not every individual tick is infected with the bacteria, so a tick bite does not automatically result in illness. It usually takes 24 to 36 hours for an infected feeding tick to transmit the ehrlichiosis-causing bacteria to its host. (3)

The symptoms of ehrlichiosis usually appear about a week after someone has been bitten by an infected tick. However, it is also common for ehrlichiosis to have very mild symptoms or even no symptoms at all. The only way to conclusively diagnose ehrlichiosis is through a blood test. The good news is that this disease is usually resolved by the immune system and requires no medical treatment. (3)

For people who have compromised or weak immune systems, such as very young children, the elderly or those with autoimmune deficiency diseases, ehrlichiosis can become very serious or fatal if left untreated. When the immune system is unable to effectively fight bacteria, the bacteria are able to multiply quickly and overwhelm the body. (3)

Treatments include-
Doxycycline, minocycline, tetracycline, rifampin and zithromax

Symptoms include-
profound fatigue
sever muscle pain
high liver enzymes
low white blood cell count
severe headaches
flat red rash
joint pain
low platelet count
kidney failure
respiratory insufficiency




This Disease Called Lyme


// December 1st, 2010 // No Comments » // Ashley's Blog, Re-Posts,

Babesiosis is an infection caused by a malaria-like parasite, also called a “piroplasm,” that infects red blood cells. Babesia microti is believed to be the most common piroplasm infecting humans, but scientists have identified over twenty piroplasms carried by ticks. Ticks may carry only Babesia or they may be infected with both Babesia and Lyme spirochetes. (1)

Long-standing infections may need to be treated for several months, and relapses sometimes occur and must be retreated. (1)

Babesia infection is becoming more commonly recognized, especially in patients who already have Lyme Disease. It has been published that as many as 66% of Lyme patients show evidence of co-infection with Babesia. It has also been reported that Babesial infections can range in severity from mild, subclinical infection, to fulminant, potentially life-threatening illness. The more severe presentations are more likely to be seen in immunocompromised and elderly patients. Milder infections are often missed because the symptoms are incorrectly ascribed to Lyme. Babesial infections, even mild ones, may recrudesce and cause severe illness. This phenomenon has been reported to occur at any time, even up to several years after the initial infection. Furthermore, asymptomatic carriers pose risks: to the blood supply as this infection has been reported to be passed on by blood transfusion, and to the unborn child from an infected mother as it can be transmitted in utero. (2)

Diagnostic tests are insensitive and problematic. There are at least thirteen Babesial forms found in ticks, yet we can currently only test for B. microti and WA-1 with our serologic and nuclear tests. Standard blood smears reportedly are reliable for only the first two weeks of infection, thus are not useful for diagnosing later infections and milder ones including carrier states where the germ load is too low to be detected. Krause, PJ, Telford, SR, Spielman, A, Concurrent Lyme disease and Babesiosis. JAMA 1996. 275 (21):1660 “As is common in the case of Babesial infections, parasites frequently cannot be seen in blood films.” Therefore, multiple diagnostic test methods are available and each have their own benefits and limitations and often several tests must be done. Be prepared to treat based on clinical presentation, even with negative tests. (2)

No Lyme cure exists if a powerful co-infection like Babesia and/or Bartonella is present and untreated to the point of full removal. Lyme cure is also likely impossible in the presence of ineffective routine dosing, (i.e. like 750 mg of Mepron twice a day), which kills some Babesia but leaves some residual Babesia alive. (3)

Current Babesia testing does not test for all possible human species. Current national labs have not invested large sums to improve species or genus level Babesia testing, or better visualization techniques that would increase the capacity to see Babesia in a blood drop smear. (3)

Many Babesia species infect humans, and more species or species variants are discovered every year. I (Dr. Schaller) believe I am seeing patients with a mix of Babesia species or species variants. For example, I have patients with Babesia microti, Babesia duncani (WA-1) and suspected MO-1. This last species is all over North America. Further, I believe microti has more than one strain in the USA, and we already know it has more than one strain in the world. I believe the dose that kills one species or species variant, does not fully remove other species or other species variants. This is a revolutionary component in approaching Babesia treatment. (3)

Treatments include-
Mepron, malarone, lariam, clindamycin, quinine, alinia, metronidazole, primaquin, zithromax, cryptolepsis, artemisinin, smilax, tesel, enula, mora, rizol oils, flagyl, biaxin, ketek, plaquenil, chlorquine, primaquine, proquanil

Symptoms include-
night sweats
flushing pressure-like headaches
violent nightmares, vivid dreams
shortness of breath, air hunger
dry cough
neck pain
trouble thinking
memory loss
sense of imbalance
encephalopathy DEFINITION

Related Post-

2. (taken from Burrascano)


// November 30th, 2010 // 3 Comments » // Ashley's Blog, Links To Other Lyme Site Posts, Re-Posts,

Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called “Cat Scratch Fever.” Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms. (1)

It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is “Bartonella-Like Organism” (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families. (1)

It has been said that Bartonella is the most common of all tick-borne pathogens. Indeed, there seems to be a fairly distinct clinical syndrome when this type of organism is present in the chronic Lyme patient. However, several aspect of this infection seem to indicate that this tick-associated strain of Bartonella is different from that described as “cat scratch disease”. For example, in patients who fit the clinical picture, standard Bartonella blood testing in commonly non-reactive. Furthermore, the usual Bartonella medications do not work for this- they suppress the symptoms but do not permanently clear them. For these reasons I (Dr Burrascano) like to refer to this as a “Bartonella-like organism” (BLO), rather than assume it is a more common species. (2)

Incidentally, animal studies show that Bartonella may be transmitted across the placenta. No human studies have been done. (2)

Bartonellosis is often mild but in serious cases it can affect the whole body. Early signs are fever, fatigue, headache, poor appetite, and an unusual, streaked rash. Swollen glands are typical, especially around the head, neck and arms. Burrascano suspects bartonellosis when neurologic symptoms are out of proportion to the other systemic symptoms of chronic Lyme. He also notes gastritis, lower abdominal pain, sore soles, and tender subcutaneous nodules along the extremities. Lymph nodes may be enlarged and the throat can be sore. (3)

Bartonella are bacteria that live inside cells; they can infect humans, mammals, and a wide range of wild animals. Not all Bartonella species cause disease in humans. Bartonella henselae causes an important emerging infection first reported in 1990 and described as a new species in 1992. It is mainly carried by cats and causes cat-scratch disease, endocarditis, and several other serious diseases in humans. (3)

Bartonella bacteria are known to be carried by fleas, body lice and ticks. Scientists suspect that ticks are a source of infection in some human cases of bartonellosis. People with tick bites and no known exposure to cats have acquired the disease. People who recall being bitten by ticks have been co-infected with Lyme and Bartonella. More research needs to be done to establish the role of ticks in spreading the disease. (3)

Babesia and Bartonella are not little addendums to Lyme disease, but are often far more serious than Lyme disease. Any physician who is not well-versed in these two killing infections perhaps should not be considered competent enough to treat patients with flea and tick infections. These infections do not circle around planet “Lyme” like small moons, instead, they are their own huge planets that cause massive consequences to the human body. (4)

In my experience (Dr. Schaller), Bartonella is profoundly agitating and causes all possible psychiatric troubles. Some patients feel like they have gasoline in their veins and are highly reactive and grossly sensitive. I also believe Babesia and Lyme disease, to a lesser extent, can also cause very diverse psychiatric troubles. (5)

It is important to realize that Bartonella is not rare. It is all over the world and only those living in the polar ice caps are immune to the risk of infection. I (Dr. Schaller) personally believe based on newer and more aggressive testing that it is more common than Lyme disease. Many are falsely diagnosed with Babesia because they are tired and fatigued, and yet this is a highly common symptom of Bartonella reported in vast numbers of studies. It is a major contributing infection to chronic fatigue and Fibromyalgia symptom clusters. (6)

You should appreciate that it is unlikely you will ever be cured of Lyme in the presence of Bartonella. Why? Bartonella is a massive immune suppressing bacteria. It can float attached to Red Blood Cells in vast numbers and not even cause a cold or fever. Just imagine, bacteria are floating in your blood and you might not have any fever at all! If you had Staph or Strep in your blood at these levels you would likely be dead in 48 hours unless you were pumped full of antibiotics in an ICU. So how is it this huge elephant floats in vast numbers and causes no severe fever and no disastrous signs of deadly sepsis—infected blood throughout the body with massive inflammation. It is because it has ways of shutting down the immune system. It violates many rules of bacteria behavior and this is one reason it has been so seriously missed until recent years. (6)

Treatments include-
ceftin, ciprofloxacin, mycobutin, levaqin, septra, doxycycline, omnicet, cumanda, clove bud oil, houttuynia, banderol

ice pick like headaches
reflex sympathetic dystorphy
cardiac problems
gut problems
plantar fascial pain
burning pain
night sweats
weight loss
neurological symptoms
foot pain, sore soles
enlarged lymph nodes
rash that looks like red or purple stretch marks PHOTOS
cold hands and feet
intestinal infection
blood thinkening
sore throat
lower abdominal pain

Related Posts-


Full Moon Flare Up?

// June 25th, 2010 // 3 Comments » // LymeBites Blog, Re-Posts

Ashley, Candice, Nani and I were having a pow-wow this evening and discussing how things were going this week when the question was asked, did we think we were gearing up for a flare up with the full moon approaching this Saturday night.  I personally believe this does in fact happen.  I had heard it a lot in the beginning of my illness, but never paid it much attention until I started keeping track a few months ago and realized I did in fact start to feel worse as the full moon approached, with the day of the full moon being the worst. 

Luckily, our resident Lyme writer (and Lyme fighter) Ashley had written about this last year so we are reposting what she had written.  The original post can be accessed here.  Please read her article and comment on your ideas on the subject.

Lyme Flares (Originally posted October 21, 2009) by Ashley van Tol

The past month has been a pretty rough on me. I had been on a new protocol for about two weeks with no dramatic changes to my symptoms. Then, suddenly, they worsened significantly. It all started around the time of the last full moon. That got me thinking. Do lyme symptoms flare with the moon cycle? I have heard that they do, but never paid enough attention to notice the trend in myself.

A friend also mentioned having read that lyme symptoms tend to be worse in April/May and September/October. This has certainly been true for me the last few years. Is it true for all of us? Or is it only experienced by those of us who live in climates with more extreme seasonal changes?

Maybe it was a coincidence. Maybe it was celestial timing. Maybe it was my lyme’s reproduction cycle. I don’t know. What I do know is that I was not the only Lymie experiencing a worsening of symptoms during this time.

What are your thoughts? Are you effected by the waxing and waning of the moon? Does the change of the season hit you hard? If you reflect back, is there a trend in which months your symptoms have been the worst over the years? Does the anniversary of your initial infection spur your symptoms?


More on the full moon and Lyme More on the full moon and Lyme 

Invisible Illness Week Questionaire (Re-Post)

// June 6th, 2010 // 3 Comments » // LymeBites Blog, Re-Posts

June 6th is Invisible Illness Awareness Day.  I am re-posting something I had written last September in response to living with an invisible illness.  I thought today a good day to share it.  Please take the time today to consider someone with an invisible illness, and please don’t tell us we don’t look sick.  There, now you’ve learned something and can veg out for the rest of the day (after you finish reading the post of course).

This is a re-post from my personal blog written September 20, 2009.  A friend of mine (also a sufferer of an “Invisible Illness”) and I both answered this questionaire about having invisible illnesses.  It’s been a while since I’ve read it, and I’ve recently told a few people about answering these questions at that time (I’m going to answer the questions again now, 6 months later and see what has changed after 6 more months of being sick.  I will post that when I do.)  So I decided to repost it for others to share what it can be like, as well as to see where I was 6 months ago and where I am today.  There are a lot of spelling or grammar errors…instead of fixing them, I’m leavint them so you can see how difficult it was for me at times to even form a complete sentence that would make sense.  The brain fog and cognitive dysfunction associated with Lyme disease and it’s co-infections can be absolutely astounding.  This is something I worked on and edited and corrected before I posted it, it took a while and still ended up with a lot of errors.  But it’s all part of what was going on at that point in my illness.  Also please note this was 5 weeks before I saw an Lyme literate physician.  At this point in time (5 months into my illness) I was being treated by a rheumatologist as best she could until I could get into see a Lyme specialist. 

Hello all. National Invisible Chronic Illness Awareness Week is September 14-20th, ending today. I’ve been asked to join the thousands of others to write something about being a sufferer of an “invisible illness”. It took a few days to be able to do it, but I’m glad I can do add to the many other stories as this week of awareness comes to an end.

1. The illness I live with is: Chronic/Late Stage/Disseminated Lyme Disease, also called neuroborreliosis, which is caused by a bacteria called Borrelia burgdorferi or Bb. The bacteria is a Gram negative spirochetal bacteria, this structure allows the spirochete to move efficiently in corkscrew fashion through viscous media, such as connective tissue. It has a similar genetic makeup to T. pallidum, the agent in found in syphilis. Bb are microaerophillic and slow-growing—the primary reason for the long delays when diagnosing Lyme disease. This bacteriological infection comes primarily as a result of a tick bite but Lyme spirochetes have also been found in semen and breast milk, however transmission of the spirochete by these routes is not known to occur. Congenital transmission of Lyme disease can occur from an infected mother to fetus through the placenta during pregnancy.
Early symptoms may include fever, headache, fatigue, depression, and a characteristic circular skin rash called erythema migrans. Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early. Late, delayed, or inadequate treatment can lead to the more serious symptoms, which can be disabling and difficult to treat. Occasionally, symptoms such as arthritis persist after the infection has been eliminated by antibiotics, prompting suggestions that Borrelia causes autoimmunity.
Ticks that transmit B. burgdorferi to humans can also carry and transmit several other parasites such as bartonella, babesia, ehrilicha, and other co-infections. I believe I am also co-infected with bartonella, a version of cat scratch fever. Lyme Disease is an invisible illness, you can’t always outwardly see the symptoms.


2. I was diagnosed with it in the year: 2009. We know I have had it since 2003, every medical problem I’ve had in that time is a direct result of Lyme disease. There is a possibility I’ve had it since I was a child (including a hospitalization for a strange arthritic virus in 1977). There are other time markers that could show when I was infected, including thyroid disease in 1987 and shingles in 1998. What we do know is it’s been ravishing my body for anywhere from 6-32 years until diagnosis with a CDC positive Lyme blot in June 2009.

3. But I had symptoms since: 2003, possibly longer. Since 2003 I have suffered and been treated for the following:

Irritable bladder system (was told nothing was wrong with the plumbing, I just had a weak bladder and would have to live with it)

Kidney/Gall stones, in and out of ER’s and Dr’s for what they believed to be passing stones, only no stones were ever found. Final decision was “maybe you already passed it and there is no sign of it having been there”. The pain neve went away, but no Dr could ever find out what caused the pain.

Depression/Anxiety: I’ve been treated on and off for years for both, usually without being able to find any reason for the triggering of these symptons.

Allergies/Sinuses: About 10 years ago my allergies took a life of their own. Each year progressing, until 2 years ago I began with constant sinus/ear infections with brutal allergies. I was told there ws nothing that could really be done, it was just allergies. I went from taking 5-7 medicines a day for allergy symptons to none since being treated for Lyme disease and seeing a Nutritionist for nutrition response therapy.

Fibromyalgia: Over the past 10 years or so I’ve developed Fibromyalgia symptons. At first I was told by 2 Dr’s that was not a real condition, and that men did not get it. AFter diagnosis I found a Dr who tested me for it and it was positive. Fibromyalgia is one of many diseases caused by Lyme disease.

In 2003 I went to a cardioloist for heart problems. My heart raced, I had chest pains, and could feel it skipping beats. After wearing a monitor for a while they said my heart was exceptionally healthy, just threw in extra beats. After being diagnosed I have been in the ER with heart attack symptons, where I was told Lyme meningitis had settled in my chest, my heart was very healthy but the Lyme is making it beat weird and causing palpitations.

I injured my back in an accident in 1997. Since then I have had symptoms on and off until a year ago the pain got unbearable. I began a series of specialists who called my case an “onion”, peeling layer after layer until they found what was wrong. After 5 steroid injections in my back (the last in April of 2009) the Lyme disease is believed to have actually activated, due to the steroids in my spinal fluid. 2 weeks after my last injection I lost vision in one eye, and that began the journey of being diagnosed with Lyme. (Please note, since being on Lyme treatment my back pain has almost diminished.)

I have strange rashes on my upper body that have been there for 6 years.

4. The biggest adjustment I’ve had to make is: knowing my life will never be the same. I will get better, I will fight this until I have no fight left to give, but I know I will never fully recover. I know this will affect the rest of my life after recovery. I know my immune system is greatly compromised. A common cold will knock me on my ass for a lot longer than the average person. I know I needm ore sleep than the average person. I know that I can’t handle the stress I used to thrive on. Now it becomes overwhelming and I have to simplify things. The hardest thing for me to accept is having to simplify a life that I loved, full of complications and complex relationships and happenings. I have to mourn that life, and learn to adjust to the life that is ahead of me. It doesn’t have to be a bad thing, it just has to be different.

5. Many people assume: That having Lyme disease is like a flu. Each day means you are better. Lyme does not work like that. The pain in my chest may be gone today, but I may not be able to walk today, or I may not be able to remember how to drive to a friend’s house. The disease changes every day, and effects every part of the body. It takes time, but I don’t think friends and family understand that…they assume having a good day is a sign of healing. It will be months before i begin to get any of my energy back, before I can begin to get better. It’s hard for people who are close to me to understand that. I think they feel in order for them to have hope they need to see quantitative changes in my recovery. Lyme does not work like that. Also, people assume I am not sick if I look like myself. It gives people a false sense of hope. Know that on a good day, or when my body is not twitching, that my body is still racked with pains and sensations I cannot describe. It’s not what you see with Lyme disease that is horrible, it’s what you don’t see. Please understand I may look healthy on occasion, but it doesn’t change what’s going on in my body.

6.The hardest part about mornings are: Normally upon waking there is a 3-5 minute period after awaking where you can’t feel any pain. At first I would think I had died during the night. Now I feel those moments when I wake up, and hold on to them as a reminder that some day I will no longer have constant pain. The first hour after waking up is the hardest. I wake up with panic attacks on a daily basis. I spend the first hour fighting the feeling of panic. With time I can focus in on the reality, and feel better. It is uncontrollable and irrational. I may spend 20 mins worrying about a phone call for no reason, or wake up thinking I’m late for work and need to call in. It takes that full hour to get a hold of my self, to calm myself and remind myself what is going on. The other feeling is pure exhaustion. Often from insominia. The frustration of waking after 10 hours of sleep and feeling exhausted is overwhelming. Today I thought I would have to sleep all day and turn my phone off, because of how exhausted I was when I woke up. But with time, you begin to start moving as best you can fo the day. The other feeling upon waking is doing a full body scan. Does somethiing new hurt? Did anything change during the night?

7. My favorite medical TV show is: Scrubs. Laughter truly is the best medicine.

Two important things: My iPhone. When I wake up it’s filled with msgs from my loved ones checking on me as a new day begins. I’d be lost without it. My medicine caddy is the other important item. From antibiotics to pain killers to Benadryl, I live out of that little caddy to get me through each day.

8. A gadget I couldn’t live without is: Remote. Many days while the world goes on without me, I rely on my TV and DVD player to keep me entertained and keep my mind off of what I’m missing.

9. The hardest part about nights are: Insomnia, feeling alone in the middle of the night when you are so tired you can’t keep your eyes open, but the pain and sensations going through your body cause you to jerk uncontrollabley to the point you end up rolling aound on the floor moaning in pain. Many mornings I’ve woken up on the floor of another room, having finally fallen asleep there.


10. Each day I take: 46 pills, and 5 liquid supplements. This does not include pain relievers, pain killers, sedatives, anything “as needed”.

11. Regarding alternative treatments: I believe in them whole heartedly. But as a compliment to traditional medicine. We need them both. Any person who has told me to rely just on alternative medicines, I’ve walked away from. I need science just as much as anything else now. I’m lucky to have an specialist who is open to those treatments and works in conjuction with my alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: I’d never choose either. I’m blessed with amazing friends and family, I don’t have to convince them I’m sick with my “invisible illness”. Chronic pain is chronic pain, I would not choose it either way.

13. Regarding working and career: on hold. In 4 months I’ve missed over 500 hours of work. I’m lucky I work for the gov’t, where I have benefits and programs to help me, otherwise I would have been homeless months ago. I think what I’ve accomplished in my 11 year career with the state, all the while having Lyme disease. Some times I get sad wondering what I might have accomplished with life had I not been sick, but I can’t dwell on the past, I need to concentrate on the future. I have every intention of returning to work and my career.

14. People would be surprised to know: Many Lyme patients take their own life before ever getting better. I feel for those who suffered so much they felt they had no other choice. I could understand feeling that way if I did not have my amazing friends and family here supporting me. I want to fight for those who are too sick to fight for themselves. I am going to get better, and make sure that no Lyme patient ever feels they have no other option other than taking their own lives. I will devote my life to fixing this. No body should have to suffer in such silence. The other thing is people saying “you’re amazing” for doing this. Doing what? Fighting for my life? I do not feel special because of this fight, I do not feel strong or empowered. Some days I struggle to wipe my own ass in the bathroom. That is not a feeling of empowerment. People say how amazing Lyme patients are for fighting, but they are wrong. It’s not a fight we chose to fight. We are all in reactive mode. I’m fighting for my life. To stay alive, to get my life back, to help others. I don’t feel special because of that, I feel human…I’m doing what I need to do to survive, that’s all.

15. The hardest thing to accept about my new reality has been: the Losses. Friends (it seems hard to believe, but you lose friends…not because they’re evil or mean, but some can’t deal with it. For some their life goes on without you. It’s so hard to see your life go on without you in it. Also I miss work…I miss the satisfaction of doing a good job. I miss the chaos of working in a budget office. I miss the socialization, I really love my coworkrs, they are more than friends to me. I miss all of that.

16. Something I never thought I could do with my illness that I did was: Tell people what they really mean to me. This disease has brought me so much closer to my family, my friends, my circle of life. I’ve learned to really appreicate the little things having people in my life means. Maybe without being sick I’d always take that stuff for granted.

17. The commercials about my illness: There are none. Thankful for Under Our Skin and the awareness that this documentary is bringing worldwide to Lyme disease and the politics behind it. (

18. Something I really miss doing since I was diagnosed is: write. The brain fog makes it so hard to get anything down on paper. I also miss driving without anxiety.

19. It was really hard to have to give up: Everything. Lyme has taken everything from me in the past few months. I fight daily to get it back. There’s nothing harder than giving up your life.

20. A new hobby I have taken up since my diagnosis is: Education. There’s got to be a way for me to keep someone else from going through this hell.

21. If I could have one day of feeling normal again I would: Go clubbing with friends. I’d dance. I’d lay in the sun with my friends and laugh at inappropriate jokes. I’d go for a walk without having my leg give out on me. I’d make up for all the times I’ve had to cancel or miss out on time with loved ones.

Outside the Doctor’s Office

22. My illness has taught me: Dr’s cannot be trusted with your life, you need to take some responsibiliy yourself. If I let the Dr’s be in charge I’d be in a wheelchair now wondering what was wrong with me, being told I was “cured” by gov’t guidelines. It has also taught me love is not pretty. It’s not well dressed, well groomed, and it doesn’t always smell good. Love can be ugly, but it’s the most wonderful thing any of us can ever feel.

23. Want to know a secret? I’m scared to death. Every day I wonder how much longer I have. It makes me fight so much harder. At the age of 36 I should not be so concerned with my affairs being in order, because I know my heart could stop from Lyme disease at any time. It’s not likely, but it’s scary to have that realization out there. My motivation for fighting is in part fueld by fear. I’ve learned to play “in character” when I’m with friends, the role of who I was. But in the back of my head I’m always scared of what this disease may do next.

24. But I love it when people: laugh with me. It’s funny when I put the dishwasher detergent in the freezer and the ice cube tray in the cabinet. If I didn’t laugh, I’d cry…I’m lucky to have friends to laugh with me when I can’t think of the right words or forget their names.

25. My favourite motto, scripture, quote that gets me through tough times is: (I’m stealing this from another Lymie…it really sums it up)

Sometimes you wake up. Sometimes the fall kills you. And sometimes, when you fall, you fly.
-Neil Gaiman

Currently listening to: DMB Groogrux King, and Eminem Relapse. Also Coldplay seems to have a calming effect on bad days.

26. When someone is diagnosed I’d like to tell them: This is where you have to take your health in your own hands. If you have a Dr who tells you anyhing you don’t agree with, you can find help elsewhere. Do not take what your Dr says as truth…you need to be actively involved in your own health and recovery. I’d also tell them they have a friend in me, and all the info and resources I’ve spent 4 months getting together, let me help you if you don’t know how to help yourself.

27. Something that has surprised me about living with an illness is: How hard it is for people to accept you are sick. That health insurance, thta which is supposed to help us, is usually against us. That Dr’s do not know everything. And that friends and family will always be the best medicine.

28. The nicest thing someone did for me when I wasn’t feeling well was: I couldn’t list one single thing. From my friends doing a benefit to help me pay for my treatment, to a random phone call or email sending me healing wishes and letting me know I’m loved. The list is unending of what they have done for me while sick.

29. I’m involved with Invisible Illness Week because: Because so many of my friends suffer in silence with their own invisible illness. MS, Fibromyalgia, Chiari…this isn’t just about me, or Lyme disease. This is for everyone who has one of these illnesses that destroys you from the inside out. I need people to understand how sick I am. I need people to get involved. I need people to protect themselves and their children from suffering like this. The more people know what’s going on inside my body, the more likely they will be to take action for themselves in the future.

30. The fact that you read this list makes me feel: like there is hope…we can spread hope quicker than a bad case of Herpes on Prom night. Let’s let hope and knowlege spread quicker than the disease, together there is something we can do. Let’s do it!!!