Why is the blog named "Camp Other" blog?
When you become a Lyme disease patient with persisting symptoms, part of your experience as a patient seeking support and advice on how to treat your condition is learning about the two "camps": One camp is on the side of the patients, and advocates for long term antibiotic treatment for chronic Lyme disease (CLD) - as the bacteria which causes Lyme disease is believed to sometimes persist past initial treatment. The other camp is the IDSA, which while it acknowledge that patients can have persisting symptoms after initial treatment and hypothesizes that the cause of those symptoms is likely autoimmune - to date offers no clinical trials and treatment meeting the definition of their post-Lyme disease syndrome (PLDS).
Working from there, Camp Other is the middle way. It is about collecting data and research from both camps and outside of these camps in order to learn about the mechanisms behind persisting symptoms from different angles. One hope out of collecting this knowledge is to develop proposals for novel treatment trials to help patients ease their symptoms and recover in less time than through existing methods.
Who is the owner/primary contributor of Camp Other blog?
One frustrated and hurting human being who is tired of hearing about the two camps in Lyme disease and being stuck in the middle of them.
In a past life, I was a researcher who wrote and published scientific papers. Most of my papers were internal and used by my employer and coworkers. Some are published in journals. On one occasion I was a technical consultant for a fiction writer's novel - that was pretty cool.
That was then, and this is now. This blog is the closest thing I have which remains of that life. Life is now about chronic fatigue and pain, doctors' appointments, and trying to get a few daily tasks done and have some moments of normalcy around coping with an illness that never wants to go away. But life is not normal and hasn't been for years.
Brief disclaimer: My background gives me some knowledge about the research I'm writing about, but I am not an infectious disease specialist or microbiology researcher nor am I degreed in those fields. I don't make any claims to being an expert in this area. I only hope that I can understand the research that IS out there so I can help myself, and possibly help others. And I hope others who are educated in biology, microbiology, entomology, acarology, neurology, immunology, and fields which touch on the research of tickborne infections will also chime in here from time to time.
What one image sums up the experience of a patient in your situation?
This one from the patient blog, Lymejello.com (zoom in for closer look):
This work is licensed under a Creative Commons Attribution
-NonCommercial-ShareAlike 3.0 Unported License.
-NonCommercial-ShareAlike 3.0 Unported License.
Julie's art is awesome. This image perfectly captures the chronic Lyme disease patient's experience when being confronted with treatment options and ideologies.
Why are you anonymous?
There are a number of reasons why I choose to be anonymous as a patient with a controversial disease.
What is your patient story - how did you get chronic Lyme disease or post-treatment persisting symptoms?
Several years ago I went for a hike in the mountains and that evening discovered a tick embedded in my back. I put the tick in a container and went to the clinic after the weekend was over and showed the doctor the tick and my new rash. I asked about Lyme disease, but was told there was no Lyme disease in the area and was given 200 mg of doxycycline to placate my concern.
A week went by, I felt okay, and then wham! I felt ill, like I was coming down with a bad flu. I went back to the clinic, and told them I felt like every tissue inside my head was swelling, with swelling behind my eyes and in my cheeks and deep inside my head. I was then diagnosed with a sinus infection, and sent home with a few days' worth of Zithromax. This didn't feel like any sinus infection I'd had before, but I began to feel a little better and worried a little less. But I wondered why the rash they told me was "probably an allergic reaction to the bite" was still there. So I went back to the clinic and requested a test for Lyme disease, and with reluctance an ELISA sample was taken. The result was negative.
Within a few days of finishing the Zithromax, I began to feel really awful. The worst I ever felt in my life. I either thought I was going to die or wish I was dead, it was that bad. Being unconscious was a welcome space to be, so if I passed out it that was fine by me.
I had a fever, chills, swollen glands - not only under my jaw but all around the back of my neck; pain in every single joint that stabbed whenever I moved even just an inch to the side while lying down, night sweats, constant muscle pain, shortness of breath, and a never ending migraine. There was immense pain at the base of my skull and entire neck.
I could barely move. Every step was painful and it look a long time just to crawl to the bathroom. I had to take baths because I did not have the strength to stand. Some days I could barely make it to the bath, but I did because sitting in very hot water was one of the few things which helped the bonebreaking pain I was in.
During this time, I began to lose the ability to read unless it was about the length of a Tweet. Coupled with this, I also lost my ability to retain anything I just read. I had trouble following conversations and could not remember whether or not I told someone something. My perceptions became a patchwork quilt of disjointed memories where confusion reigned.
It was a challenging time for me on numerous counts. I was working on a project that required a lot of reading, writing, and synthesizing data when this hit and realized I was incapable of working.
I had to stop. Between pain and cognitive dysfunction, I couldn't do my job.
Fast forward a little. After I stopped working, I dipped into my savings to see an LLMD. With my insurance, there was no way to see an infectious disease doctor without a referral, anyway - and I was hoping that with aggressive early treatment I would recover soon.
Early was not early enough, however. It turned out the clinic's misdiagnosing and treating me with the wrong antibiotic cost me, then after that, recovering from an allergic reaction to a different antibiotic cost me more time.
My Lyme disease had disseminated. I also found out several months later one of the reasons I had been as sick as I was early on was because I was coinfected with babesiosis. Immune testing had revealed an immunodeficiency. And I retested for Lyme disease and my result was now positive.
Between this history and other factors, I agreed to try antibiotics and antiprotozoal medication long term. They helped me enormously, as I went from being in pain so bad I wanted to die and not sleeping most nights to wanting to live and sleeping five hours a night without interruption. This was not optimal; I wanted a cure. But it was a huge improvement in my book so I consider the treatment of value.
After several more months of treatment, I got well enough that I could go back to work for a while. I began working part time and eventually full time. Then I got sick again, and eventually had to leave my job.
Since my initial round of treatment I have experienced ups and downs and complications from both my disease and the treatments themselves. I'm not sure what to do next; it is unclear what the best course of action is for someone in my current situation.
On and off, I continue to see different specialists to see if there is any other condition which causes my symptoms.
Mostly, it is a fruitless enterprise. Mostly, I am sick of everything medical at this point.
How does your medical condition affect you - especially in the writing of this blog?
As of November 2012, I find that I am cognitively affected in these ways:
- First of all, I have fatigue and brain "fog" to work through. The fog has gotten better with treatment and time, but the fatigue can be relentless. I push through it sometimes...only to crash. Other times, I can't write an entry - even a short one.
- I have chronic headaches and sometimes they are bad enough I can barely think straight, but I try to write anyway.
- Depression. This is an extension of living with chronic illness and not the cause of it. It can kill the motivation to research and write.
- Trouble prioritizing and creating outlines for entries. "Free form" writing is usually easier for me than structured analysis - when it used to be the opposite pre-Lyme disease.
- Tendency to ramble. I have trouble cutting a large post down to size.
- Tendency to "lose the plot" and begin writing about something unrelated for some time before I catch myself - sometimes much later. These unrelated paragraphs become the drafts for other posts... unless I entirely did not catch myself.
- Word salad and occasional word substitution. I used to have no problem using "there" and "their" properly, and used to even be a member of the grammar police in the past. I can't be any more, because apparently even when I know something is wrong, I don't always catch my own mistakes that I wouldn't have made in the past.
- Word substitution can also be similar sounding words such as using "household" when I intended to use "housebound" or a noun substitution from the same category, such as "oven" for "fridge". Spellchecking does not catch these errors.
As of November 2012, I am physically affected in a number of ways, too. My main symptoms are daily joint and muscle pain, paresthesias, digestive problems, skin rashes (do not appear to be erythema migrans but other kinds of rashes), fatigue and pain upon exertion. I experience a crash if I "push" myself hard physically, and have to lie down for a long time before trying to do something else which requires seemingly normal levels of effort.
Much of my life is spent in bed or on a sofa with a laptop. I go out occasionally, but it is tiring and hurts. I have trouble sitting for 2 hours upright in a chair, so a long movie can be painful to watch without pain medication and/or additional padding. I try to watch Netflix at home. Standing in one place also hurts, even with a cane to lean on - and walking is actually less painful.
I periodically get severe attacks of pain in different parts of my body for no reason I can ascertain except that my nervous system decided to go haywire. Lucky me.
Now you know (if you didn't before) why I want more research on my condition, and why I want to spend time learning as much about these damned spirochetes and my immune system as I can.
Why are you writing this blog?
I wrote a critique about the Chicago Tribune's article published in 2010, "Chronic Lyme: a dubious diagnosis", and that became the basis for this blog. And as time went on, I realized that improvements in cognitive functioning from treatment I was taking had made reading and writing easier again - so doing online research and writing was something I could do while my primary symptoms are fatigue and pain.
Distraction is a very good thing when you are in pain, so I do everything I can to distract myself. Fatigue means everything happens on its own slow timeline, but that matters less when one is blogging. Your deadlines are your own when it isn't a job. Blogging seemed like a sensible thing to do that might help me and other people. So those are reasons why I have written and why I continue to write.
And it doesn't hurt to try to learn something new if I can. (Retaining it though... that's still a different matter.)
Are there plans to have anyone else contribute to the blog?
Yes. I am looking for guest writers who work in sciences to contribute via their own short articles and interviews for the blog.
How can anyone contact you?
Email me at CampOther at gmail daught calm (Spelled that way to deter spambots.)
Or you can leave me a comment with contact information and request within that comment that I do not unscreen it.
What happened to your old FAQ?
I felt it was outdated and I needed an "About" section written for a wider audience, so I removed it. It is available upon request.
What message would you have for anyone working on Lyme Disease and other tick-borne illness research?