Last week I had the remainder of my Lymestop treatments, and lets just say they didn't get off to a great start. I went into the office, determined to talk about my pain, as this has been, hands down, my most debilitating symptom - one of which no doctor has yet to help me with in any way other than dolling out more pain meds.
I had printed out a few pictures of these weird lines that cover my back which look like raised stretch marks. A previous doctor told me this was bartonella, but I wanted to get a 2nd opinion. I've felt especially certain that my back pain is related to Lyme because these same "stretch marks" covered my stomach in the first 3 years of my illness when I had extreme digestive issues.
Before we got going on the treatment, I explained this to the doctor. His biting response was, "it doesn't really make a difference." I'm a sensitive person, but even my husband thought it came across as rude, dismissive and offensive. He continued to perform my treatments in a very gruff manner, which lasted all of 10 or 15 minutes, and then told me I was done and that he'd see me in the afternoon. Determined for an answer, I told him I really wanted to address my pain. He told me, in a very contemptous way, that we can talk about it in the next appointment. I couldn't help but feel like a reprimanded child, chided for getting in his way and asking any kind of questions, and just a number in his grand scheme of patients.
I was honestly pretty furious about it. I know he has his methods that seem to really work for people, and that he knows what he's doing, but I couldn't help feeling upset that we drove all that way, took all that time off work, gave him all that money, and he couldn't even be bothered to answer a few questions. There is a facebook group for Lymestop patients, so I took to posting my frustrating experience to see if any other patients had ever dealt with this same bedside manner, and if they had advice on how to handle it. I got some great feedback.
A lot of people reminded me that from the doctor's perspective, dealing with the energy of a ton of very sick people can be draining and stressful. The gals in the office had told me that my 2nd week there was a VERY busy one for Lyme patients, so I'm sure that played a role in his moodiness. They also reminded me to think of the bigger picture - that regardless of the symptom and its location, the most important thing is just to clear the infections - and only then will the symptoms begin to clear away. I had several people tell me that chronic pain was their biggest symptom as well, and that as time passed and the infections cleared, the pain dissipated. I would highly encourage anyone who is seeing, or thinking about seeing, Dr. Smith to join this group. It's so great to get insight, advice, and encouragement from people who know EXACTLY what you are going through.
So anyway, in my afternoon appointment, the first thing Dr. Smith did when we walked in was ask about my pain. He must have finally read all the paperwork I had filled out because he kept saying he didn't realize how dibilitating it was for me. His demeanor had entirely softened by that point, and the difference was night and day from my morning visit. Maybe he saw my facebook post?? :)
He first checked my back for infection, but to my extreme disappointment, said that he couldn't find anything. He tried again, with the same results. I did my best to choke back my tears. He decided to treat my back anyway, just in case an infection was hiding. For the rest of the day, I did notice that my pain increased significantly, which I thought may be a sign that the treatment did have an effect. And then the next morning when I got out of bed, for the first time in forever, I realized that I went an entire hour without even thinking about taking pain meds.
I told Dr. Smith about this that morning, and he seemed to agree that there must be something there. He said, "that must have felt weird to you" and I admitted that he was right, normalcy has become such a foreign thing to me, especially when it comes to having a moment without pain.
He checked again and said it was very possible I had BORRELIA IN MY BACK. He asked if I had ever had a back injury, as often times the viruses settle in to places when that happens. Although I've had back and neck issues my whole life, I haven't ever had a significant injury. However I did have a cyst removed near my spine back in December of 2012. I thought about this more throughout the day, and realized that the cyst pain was an entirely different feeling and location from what my pain is now, and that what I currently deal with DID start after my surgery! And it just so happens that the place which radiates the most pain is just below where the surgeon sliced his way in. So at my afternoon visit, I explained this to the doctor, and he agreed that it is extremely likely that borrelia has settled its way in.
He also found another virus that he had missed the first day - LYME VIRUS D IN MY SMALL INTESTINE. Several patients had told me that this process is like peeling an onion - that the doctor finds and treats your body layer by layer, because of how well the infections can hide and settle into the deepest parts of your body. So it will be interesting to see what he finds in my follow up visits, and what other viruses will reveal themselves as time goes on.
The rest of my encounters with Dr. Smith were quite pleasant, and it was clear that he genuinely cares about each and every one of his patients. He even gave me a hug on my last visit and made it apparent that he really wants to see me better.
WELCOME TO MY PHARMACY!
I was given 3 bags full of medication to take over the course of the next 3 months, according to my muscle response testing. The plan is very carefully thought out as to when I will implement each supplement. I will also be following a moderately strict diet for the SIBO and for liver detoxification for the next two months (and then a similar antinflammatory diet for the next 4 months). For the most part, it falls in line with what I have tried to practice for years.
One of the hardest things for me is sugar - since the Lyme bacteria feed off sugar and make me crave it. But hands down the most difficult part of the diet is NO CAFFEINE! What will I EVER do without my coffee??? I've been drinking it since high school, several cups a day, and sometimes even more when I have a disasterous night's sleep (which is more often than not).
Many people have asked if I have to go back to see Dr. Smith, and the answer is "yes"! In 3 months I will be going back for a follow up appointment, where he will re-test to see how I am doing - if there are any new or lingering viruses etc. People have also asked when I should expect to start feeling better. Here is some info from Lymestop that says it best:
"Each person's detoxification process and healing journey is unique. The severity of your detoxification symptoms is in direct proportion to the toxicity of your body.
This is determined by: the number of infections your immune response is eliminating; the toxins released by the dead infections; and the capacity of your detoxification organs (liver, bowel and kidneys) to remove them effectively and efficiently.
Most people do not begin to feel better until they have finished detoxing. The more toxins your body tries to eliminate, the worse you will feel. The average treated person begins to feel better after their 6 weeks of detoxification and they usually feel noticeably better within about 3 months. However, it may take your body as long as a year or more to fully recover, depending on how sick you have been."
Because I have a viral liver infection and a lower functioning liver, as well as MTHFR, I can expect to have a hindered detoxification experience.
My last question for the doctor before we left was about our outlook for starting a family. I had expected that it would be at least a year until we were safe to try getting pregnant, but he said, quite confidentally, that we could begin to try again in 6 months. So we left on a happy note, knowing that the possiblity was sooner in our future than expected.
Up to that point, I had thought that the whole process was easier than expected - I felt crappy, but not too much worse than normal. In fact, I had noticed that my sinuses were feeling a little better. (Although now that we are back on the westside, they are back to normal....coincidence? I think not!) And like i said, I was able to do more than usual during a few of the days. However, it didn't take long for reality to set in. During our time there, I had felt a weakness that I hadn't experienced before. But the day after my treatments were over, I felt like the life had been completely sucked out of me and that my body was full-out shutting down. It hit out of nowhere too. Then there is the pain, which has been unreal - sharper and deeper than it's ever been before.
On the Saturday before our trek home, we celebrated my niece's 8th birthday. I helped decorate the house for her Barbie Island Princess party by hanging up streamers and peacock feathers. I love doing this kind of thing, but I knew when I was doing it that it probably wasn't a good idea. I can't even begin to fully explain how horrible I felt after. Aside from the intense back pain, my legs were shaky, I was consistently out of breath and sweating buckets from doing next to nothing, and my whole body was so weak and fatigued that I eventually had to just give up and go to bed. Of course a house full of screaming girls running up and down the halls didn't help! It was one of the roughest days I've had in a while. However, nothing can stop me from enjoying time with my family and the most adorable nieces in the world. ;)
So for now, I'm in an incredible amount of pain, not sleeping, and feel like I have an intense flu and a sinus infection. I'm so weak I can barely get off the couch and I'm sweating ALL THE TIME, even when I feel cold. The scary thing is, I didn't even start my protocol of supplements until this morning, so I'm sure it will only get worse from here. Thankfully I am blessed to have a very understanding boss and coworkers to help get me through these next few months.
One thing I definitely realized over the course of our trip to Idaho is that I'm even stronger than I thought I was. Dr. Smith was amazed at how fatigued and tired I tested, and how disabling my pain has become. The fatigue part surprised me, but really it shouldn't have. I think about how I feel after a big event - that I can barely move off the couch the entire weekend. It's made me realize that I have pushed myself way harder than I probably should have all these years. Doing that now would probably prolong the healing process even more, so I'm doing my best to scale back on that a bit.
Thank you AGAIN to all my wonderful friends and family who have helped get me to this point and through the rough times, both financially and emotionally. Even though I believe I'm strong enough to do it on my own if I had to, I couldn't imagine enduring this journey without my rock, my husband, and all of you who have helped keep my head above water. I know it's been difficult for my family, and especially for Leigh, to see me suffer all these years, and I want so badly to get better not just for me, but also for them.
It's been an emotionally draining few weeks, and as apprehensive as I am about the next few months, I am feeling very hopeful and confident that Leigh and I will be ringing in 2016 on our way to getting our lives back.
