The Many Questions

When one finally admits that one is physically ill the questions that come from well-meaning friends  and colleagues are many. I thought it would be fun (and healing) to answer them .... again....all at once, where everyone can read them.

How are you? This is such a tough question to answer. "Hanging in there" seems to be my most common response. "It's complicated" is what I often want to say. Maybe if the person asking the question reads the answers to the rest of these questions it will all make a little more sense.

Were you bitten by a tick?
I want to answer with a smart ass comment but I have refrained from that and have chosen to stick to the facts. I grew up in Maryland on a farm where my parents had a deer butcher shop. Finding ticks on your body was just part of life. It wasn't a big deal to us. I can remember it being kind of a fun event to burn them in an ashtray after digging them out of your skin. The only tick bite I actually remember is the one that seems to have caused this disease. That would have been Father's Day 1995. I was sitting in the grass in a dress and a few days later found a tick buried into my ass check. Like always I pulled it off and didn't think anything of it. I remember it itching and noticing that I had a big rash on my butt which wasn't typical for my tick bites. At the time I didn't really know anything about Lyme Disease or what one should do if that happens. Now I would get my "ass" to the doctor and demand a course of antibiotics to prevent transmission of the infection. I didn't have that information then so I just ignored it.

When did you get sick? I started getting sick not too long after the tick bite. This is all a bit foggy and it is a long complicated story. The short version is that it started with generalized viral symptoms which I thought were allergies and/or a sinus infection that I couldn't get over. That progressed to severe fatigue, joint pain and eventually crippling neuralgias. I had to move home with my mom and was barely functional. I had heart palpitations, severe headaches and pain. I was diagnosed with Lyme Disease and treated with antibiotics. (Unfortunately it was the wrong antibiotic for too short of an amount of time.) I improved enough to return to Pennsylvania for my senior year of nursing school but was never the same. Since then I have had one health issue after another with more diagnoses than I care to discuss (including Fibromyalgia). Most recently, in March, I developed a severe headache that decided to stick around for over 2 months. Really this was a blessing because it led me back to "the beginning" of when my health deteriorated and also this road to healing.

What is the treatment? This is a complicated answer. As if any of this isn't complicated! First I spent a month taking various supplements and medications to get the body stronger, decrease pain, get better rest, etc. Now I am on very powerful anti-microbial medication (Samento and Banderol). The main problem is giving people too much too fast and making them very sick. The combo seem to kill all forms of the bacteria even more effectively than traditional antibiotics. Once the bacteria is dead the body has to deal with the neurotoxin, excretion and inflammation. One is subject to something called a Herxheimer reaction. (Just thinking about "herxing" as it is called gives me the chills.) It is a reaction from bacteria die off that occurs in Syphilis and in Lyme Disease. My experience after the second dose of the medication was an intense headache, body pain, severe sweating, chills, fever and overall misery. That episode lasted for 5 hours and thankfully hasn't returned with such intensity. Currently I am suppose to increase my dose every 2 days until symptoms worsen or I "herx" and then hold the dose until I feel better. So far I can only handle increasing once or twice a week. My doctor was kind enough to start me on 2 drops (starting dose is usually 5). It has taken me 2 1/2 weeks to get up to the starting dose. Apparently that is fine. Slow and steady will win this race.


Are you feeling better? Define better. I feel like I am on the road to healing. That is better. Do I have more symptoms than I care to list or think about? Yes. Am I better than I was when I had a non-stop crushing headache for 2 months? Yes. Do I feel better than the month that I worked on getting stronger and was headache free? No. Do I know that this "feeling worse" is actually a sign that I am getting better because the stupid little Lyme bacteria are dying, secreting neurotoxin, causing an inflammatory response and the body is trying desperately to excrete them? Yes. Is that better? I guess so. Does it feel better? No. See...complicated.

Is the treatment working? I sure hope so. Only time will tell. The fact that I feel sick when I take the medication seems to indicate that the bacteria are dying. How much damage was done from years of having this disease and will it all be reversible? Again, only time will tell.

How long will you be in treatment? Impossible to know but the doctor seems to think one to two years. The first few months are the hardest and after that my periods of feeling better should be "a lot better" and the bar will continue to rise of what "better" is. (At least that is what he tells me. What I have read on the Internet seems to corroborate that.)

Who is your doctor? Dr. Ryan Campbell. He is a naturopath (better known as my angel) who recently moved to Eugene. While in school he worked in a clinic in Seattle with a Naturopath and a traditionally trained medical doctor who specialize in Lyme Disease treatment. The term is "LLD" - Lyme Literate Doctor. Meaning that most doctors are truly illiterate in this realm - either have very little to no information on how to treat Lyme disease or have the incorrect information that after a month of antibiotics the disease is gone and any symptoms that happen after that are unrelated. A LLD is hopefully informed in the latest information and connected with ILADS which is the organization of physicians that has the most current treatment information. Dr. Campbell has really gone the extra mile for me. He has done copious amounts of research, has called and consulted with the docs in Seattle and he has even spent a day job-shadowing them recently to make sure he had all the current information on how to treat Chronic Lyme Disease. But the most important thing he has done is to really listen to me, to not discount my experience and to trust me. Those things --- priceless.

How did you find this doctor? Magic.

Have you tried _______? Yes. I have tried almost everything. And if I haven't I probably don't want to at this moment. If you still feel compelled to share then I will listen but please understand I am saturated in this department. In addition to the treatment from Dr. Campbell I am also taking Ayurvedic herbs and following the principles of an Ayurvedic diet for my body type, getting craniosacral work done every 2 weeks (by Benjamin Bell), an occasional massage when I can tolerate it (from Leslie Morrison), daily saunas and hot tubs and resting under heated blankets when I can. I am also supposed to walk and do a little yoga each day (this doesn't always happen). I am open to acupuncture but haven't seen improvement with it in the past. Maybe it could help with the side effects. I will sit with this and see. Finances are a big barrier right now so I have to weigh every decision and see if the benefit is worth the money.

Do you need help? Or, let me know if you need help. Another tough one. Anyone that has every lived with illness knows how hard this is to answer. I am used to giving help, not receiving it. My very wise and inspirational co-worker has offered to help me make a list of what would be helpful so that when people want to help it is easy to guide them. I like this idea. This seems a little better than my current answer, "I am not good at asking for help or giving ideas. If you want to help then do it, but don't wait for me to direct it."
I think the most helpful ways of giving to our family right now are meals (veggie and bean soups and stews are great) and help with general house cleaning and gardening. We also really need an employee that will work at our cat kennel occasionally so we can get away. Our employee moved to Hawaii. We didn't even get to celebrate our 10th wedding anniversary in May:(  Right now we are needing coverage for July 30-31, Labor Day weekend 9/3-9/5, November 5-7, and December 25-27. We also could use volunteers to help with data entry and petting kitties. Check out our website for more info about the kennel www.auntiescatkennels.com. I'll think of more ideas in time.


After this doesn't work are you going to go to a real doctor - an M.D.? It has been two months since I was asked this question and thankfully it isn't putting me into a rage anymore. I know the man that asked this was genuinely concerned. But really it makes me want to punch something or someone. When I was in the shower (which is where I do my thinking and reflecting) I attempted to count the number of M.D.'s I have seen since getting sick in 1995. I would estimate about 15. I am certain I am forgetting someone and I am even more certain that there are a few I would like to forget. This isn't counting the countless "other" professionals I have seen with various titles: therapists, acupuncturists, naturopaths, homeopaths, massage therapists, herbalists, energy workers, etc. etc.
I am an R.N. so I have quite a bit of knowledge about and experience with working with traditional western physicians. I really see both sides of the coin on this issue. I feel like they are generally good people who are doing the best they can with the training they have had. That said, some choose to continue to grow and "think outside the box" while others choose to put up cement walls to strengthen the box as not to let in a single new idea or way of looking at something. I have met some of both extremes, but most fall somewhere in the middle.
In my own quest for health I have too often had the experience of explaining my history, having tests done, and when the tests don't show a clear problem being told either "You are fine" or "Here is the name for a good counselor" or "Here is ____ diagnosis (that is totally unrelated to the other 15 diagnoses you have)" or "Do this and you will be fine" or "Take this for the symptoms (without treating the cause)."
Without ranting anymore, I can answer this question by saying that I have been to many physicians for many years. Some have helped with symptom management but no one has offered any sincere advice that seemed to be leading to a cure. And truly, if this treatment works - which I believe it is - I wouldn't care if my current doctor was a veterinarian.

I highly recommend watching a very good and disturbing documentary about Lyme Disease "Under Our Skin." Available on Netflix.


(P.S. Are you worried that all the posts are going to be this long and you will never have time to read them? Fear not. They will likely be short. I just had a lot of information to share to "build the foundation.")