13 1/2 Years Later: What IS this?

Kwanzan Cherry Tree in our Yard.

As I recline here, listening to WDAV Davidson I feel anxious about writing an authentic post. Looking back at last year's posts, I see that I have not written an honest update since my What's In A Day post at the end of September. Today, as my hands rest on the keyboard, I'm hoping for the courage and energy to write about what has been going on medically, something I've blogged very little about over the past year. Last time I wrote in June we were Waiting for a Breakthrough. And we still are. I will do my best to relay what has transpired medically over the past few months.

All photos from early Spring 2011.

After our trip to Chincoteague (which I still haven't written about), we stopped to see Dr. Complex on our way home. The appointment marked one year since I started working with him. We continue to find ourselves in a state of 'an enormous status quo' as he would say and using the 'laws of the shotgun'. Dr. Complex says: "If I could find the source of the fire, I would be able to put it out instead of putting out all of these little fires."


We had an honest discussion about where I am six years after beginning treatment for Lyme disease and one year after working with him. I've never been a 'slam dunk' for Lyme disease. While I have some indicators of Lyme or some sort of infection, I also have markers that point to other, unknown, causes. For example, I have an elevated C-Reactive protein, which is not typical of Lyme OR non-specific CFS. I also have a strong positive for a rare Herpes virus (HHV-6) that has been found in many people with CFS and Lyme.  At this point treatment with anti-virals, while still used as a protocol by some, hasn't proven to be as promising as originally hoped. Over the past year we've seen some metabolic changes (getting my Vitamin D levels healthy) but nothing that has been reflected clinically.

What we know is that over the past six years my response to Lyme treatment has been limited.


Dr. Complex still believes strongly that my illness is vector-borne and infectious in nature, but we cannot identify the infectious agent. We agreed, though, to stop all of the antibiotics for a while to see how I do off of them. We need to see if they are of any value at this point. I am still doing other treatments to target inflammation, adrenal fatigue, sleep, etc. He continues to treat me based on the premise that, regardless of the cause, finding ways to improve my quality of life are important.

We agreed that the next best step would be for me contact Dr. ANS and ask him the following questions:

1. What if we stepped back from treating this as Lyme disease? What if, instead, we treated it strictly as ANS Dysfunction and CFS?

2. What other treatments might we try?

3. Would it be possible to see Dr. ANS in his clinic again (something I have not done since 2004, as we have communicated via email and phone since then--pages and pages and pages of emails!) For those of you reading this, it may seem odd that I have not seen Dr. ANS since 2004, but I am in constant contact with him and he is still my point guard on everything--from writing letters to other doctors and to the insurance company to keeping up with what is going on with all of my other doctors to emailing extensively with me re: any questions I may have.

Dr. ANS responded to my email with the following:

I doubt the answer will be found in trying to stabilize the ANS differently. In many ways, you are on a full-court press with the ANS anyway, and I suspect it will settle down only when we find something to more effectively treat the underlying cause of the problems.

He also graciously agreed to see me in clinic to see if anything popped out in the examination and discussion. In a little more than six weeks, we will be making a big trip to see both Dr. Complex and Dr. ANS in back to back appointments.

These conversations between Dr. ANS and Dr. Complex transpired between the end of October and the end of December. They have been intense and time-consuming, and much of them took place over the winter holidays. While I was trying to keep it together for the holidays, I was having these conversations with my doctors feeling completely overwhelmed.

I have always challenged and questioned my diagnoses from the beginning of getting sick, and I continued to do that throughout the past six years of my Lyme diagnosis. I haven't been a passive bystander in this process.

How can we be 13 1/2 years into me being sick and still not know what is really wrong? What does this mean for moving forward? Did I put myself through all of those Lyme treatments for nothing?

Dr. ANS and Dr. Complex are the two of the most engaged, responsive, smart, intuitive doctors I have met on my journey thus far. I've started to come out of my state of being completely shell-shocked by our collective lack of clues as to what is going on and where to go from here. Right now, I'm trying to put my fears and my questions in a little box where they will stay, contained, until I see both doctors in several weeks.

We certainly all felt that, as a team, we would be able to make progress this year. It's difficult to end yet another year with so many unknowns and a continued status quo in my health. I wrestle a great deal with how much energy I want to put into pursuing more treatments and options vs. an acceptance of what is (as people such as Laura Hillenbrand and Toni Bernard have done).

What is enough? How much is enough to try? In my years since getting sick I have tried over 100 medications or supplements, seen over 50 doctors, been through hundreds of tests, tried many other treatments such as diet, exercise, therapy and bodywork, and have a medical record over 1000 pages thick. I continue daily and weekly to use a combination of these tools. 

I will have to wait until my two appointments to see how Dr. ANS and Dr. Complex feel about what to do moving forward. I am not sure how to reconcile the differing points of view that either 1. we do not know the cause at all, or 2. it is infectious in nature, but we do not know what type of infection. I am sure we will hash this out extensively at my two appointments.

I am always baffled by the fact that we have these multi-system illnesses that leave people like me very, very sick and we are unable to identify what is making us so sick. 


So, if it seems I've fallen silent lately, I have. With no change on the health front, I'm a bit tired of sounding like a broken record. But I realize by not sharing what has been going on, I've left my friends and family in the dark as to what kind of treatments I have been trying (even if they haven't worked) and why we are making the decisions we are making. These medical conversations came in the midst of my grappling with several other difficult changes, transitions and questions.


At first I felt shell-shocked by the conversations I had with Dr. ANS and Dr. Complex over the past couple of months. I still keep replaying phrases like "an enormous status quo" and "laws of the shotgun" and "until we know a cause". I also keep thinking: "Thirteen and a half years and we are still up in the air?!" Being 'up in the air' is not my forte.


At this point, my job is to recognize that I have placed myself in the hands of two of the most capable, skilled, compassionate, passionate, dedicated, intuitive and creative doctors available to treat patients like me. While I need to continue to be my own best advocate, I also must recognize that the biggest part of my job was in finding these doctors. I know that they will both doggedly pursue answers and ways to help me. This makes me, in so many ways, one of the most fortunate of people with an illness like this. Still, it's not a fun place to be all of these years later.


Blessings,


Emily

Waiting for a Breakthrough

Our teeny little late-blooming daffodils.

Since starting to see Dr. Complex last October, I have blogged very little about my actual treatment plan, our trips down there, and how things are going medically. A large part of me is in a 'wait and see' mindset, wanting to give Dr. Complex plenty of time and space to try new things, learn to understand my body, and hopefully see results. My body has a lot of repairing to do, and I want to give it time to respond to the treatments. Another part of me is waiting to write until I have good news to share.


Instead, what I feel right now is terribly discouraged and scared. 


During my last phone consult with Dr. Complex three weeks ago, he asked me if I had seen any improvements since I had started seeing him. I hate answering this question, especially to a doctor who is working so hard to help me. I hate having to say that I have seen very little improvement, as if it is a criticism of Dr. Complex for not finding something to help me. It is also painful for me to even type this in a blog post. 


My quality of life may not be as low as it was during the Year of the Pajama, but it never surpasses the level of low. It only fluctuates between low and very, very low. It has, for the most part, been this way since 2004. Prior to that I had periods of some improvement mixed in with the intolerable times. Overall, I feel that my health has continued to deteriorate over the last 13 years.


When I admitted to Dr. Complex that I had not seen significant improvements since seeing him, he said that we would try for a breakthrough. He added in more supplements and medications. Over the last several months, I've been trying lots of different approaches to treating my body as a whole.

Tiny, but oh so cute. ;)

When I try new things, I tend to wait things out longer than I probably 'should'. I'm still learning how Dr. Complex operates and how long to give things a try before seeing results. This week, after noticing that I continued to see no signs of a breakthrough, I decided to check in with Dr. Complex to see if I should keep plowing ahead or we needed to re-evaluate. Dr. Complex called me personally during my very small window of 'awake' time.

When I told him what was going on, describing the crushing physical and cognitive exhaustion, difficulty sleeping, waking up feeling as if I haven't slept, weakness, difficulty sitting or standing, etc. and that I had not seen any changes since adding in the new treatments, he said: "That is very discouraging." 

He came up with other strategies, tweaked what we were doing, and suggested we discuss some other options at my upcoming appointment in a couple of weeks. 

To give you a sense of proportion.

At my last face to face visit with Dr. Complex he said: "Are there other patients who are as sick as you are? Yes. Are you in a special group within that group? Yes. You are in a special group." 


Now, in a blog post his words may sound cold or harsh, but let me assure you that they are said with such compassion, almost to the point of personal heartache himself that he cannot do more to find ways to improve my life. 


Still, I'm never quite sure where to go with these statements. How do I remain hopeful? What does hope look like in a situation like this? What is the best we can hope for? What is the balance between acceptance and hope? What is realistic? What does it mean if even the best doctors do not have answers? 


I can also feel like a failure. What am I doing wrong that I can't get better? What am I missing? What piece of the puzzle have I failed to investigate? What else should I be trying? Am I not trying hard enough? Am I not pro-active enough? Maybe I should just read The Secret and create a vision board? (Definitely not being serious on that last point!)


I can get a serious case of monkey mind. Deep down, I do know that how I feel and the fact that I am sick is not a result of something I have done 'wrong'. I don't believe in a punishing God. And I know that I have worked tirelessly to improve my life.


Sometimes I just wonder how in the world I can be this sick for this long yet have so very few answers and so very little understanding of what is happening to my body. The unanswered questions haunt me every day.


We have no prognosis. 

More of the Sundisc variety.

It became clear very early on in my illness that the doctors who did not dismiss my illness were confounded by it. As early as 2000, the cardiologist who originally diagnosed my ANS issues by tilt table test mentioned that patients with POTS fell on a scale of A-Z. I was a Z, he said. A Z he said, needed to go to a different, more experienced specialist.  In 2001 that top specialist in ANS disorders began mentioning how refractory I was as a patient. At one point, he told me that this was my life and it would not improve.  


After that I continued to pursue more answers, which led me to Dr. ANS who is, bar none, one of the best specialist in the world in CFS and ANS disorders. He, too, has felt that where he can usually find things that help patients, he cannot find things that work for me.


I share this as a frame for what Dr. Complex has said since I started seeing him. The complexity of my case is what has led to so few answers, so many different specialists, so many treatment trials. Over time the failures to improve my health and the continued acknowledgement of the difficulty of treating my case accumulate. 


On one level it is very validating to hear both Dr. Complex and Dr. ANS acknowledge how hard this is and to affirm how truly sick I am. It's a significant improvement from being tossed out the door by doctors who chose (and still choose) not to believe me or refused to treat me. But the number of times I have heard that my case is complicated, complex, and challenging have accumulated in a little box in my mind, challenging my ability to stay hopeful. It gets harder and harder to keep dusting myself off and pushing through new treatments. I definitely have my days when I think:  "F*** this" and want to just stop all of the treatments. (Yes, I use that word on bad days!) Yet, I am so very fortunate to even have access to the treatments.


Very few doctors even want to work with patients like me. I have continued to find my way to new treatments and doctors as the previous ones exhaust their arsenal of treatments to try. Early on in my journey it was much easier to say: "Well, I just haven't found the right doctor yet." Or, "I just haven't tried the right cocktail of treatments." Or, "I just haven't found that rare illness I have, but when I do we can treat it."

The last of the Birthday Bulbs to bloom.

I am terrified of feeling this poorly day in and day out for years to come. I try not to 'go there', taking things one day at a time. Right now, I'm feeling the weight of 13 years of unsuccessful treatments.


I've been avoiding blogging in part because I've just been too sick and in part because I'm afraid to share how vulnerable and sad I feel right now. 


I'm longing for a break in the symptoms and some sort of breakthrough. 


Blessings,


Emily

Where's the Recovery Button?

Me and Dr. Surgeon stylin' pre-op. 

First the good news:  I am officially stitch-free and the incision is healing well. I'm really not experiencing much soreness where the port was removed and am already sleeping on my left side again. Being able to sleep on my left side so soon after surgery makes a huge difference. It is a much different experience than the discomfort from having a foreign object inserted into the body.

Before my surgery, the surgeon agreed to participate in a little photo shoot. He has really gone above and beyond for me during my gallbladder removal, port insertion and port removal. I'm surprised that he is still willing to operate on me after he was paged at 2 AM to come to the ER after my gallbladder was removed!

Mom had an epidural a week ago, which along with the neurontin, actually seems to be bringing her some level of pain relief. She is at least not rating her pain as a 9/10 now. Yesterday she had an endoscopy to see how her bleeding ulcer was healing. Ta da! It is gone! :)

If it seems like all we do is go to doctors appointments and procedures, well, it seems that way to us too!

Now for the not so good news:  Recovery beyond the actual location of the incision has been a different story. In fact, I think they forgot to push the 'recovery button' after surgery. If you know anything about the location of this button, please let me know! For those of you who follow me on Facebook you have already heard me whining about how lousy I feel...but I did want to get an update out for friends and family who might think I have otherwise dropped off the face of the earth.

I am one week and one day post surgery and have been feeling pretty much as awful as I did during the Year of the Pajama. So far, I have seen very little, if any improvement. Right after surgery, I probably had a Herxheimer reaction from the antibiotics because I experienced two days of pain covering every inch of my body throughout my muscles and joints.

Since that settled down I have done very little other than eat small amounts (nothing sounds very good right now) and sleep. I have not been able to engage in any of the activities that usually distract me from feeling lousy, such as TV or books on tape. I've been relying on my Smartphone to check in with the world in little bits and pieces. I've been rediscovering some of my music on my iPod. I did get to watch a little TV the past couple of days, so that is progress! Pushing to engage in an activity (like I am doing right now) just makes me feel sicker. We all know I am not feeling well when I'm too tired to talk!

Okay, so I'm just going to come out and say that basically I'm miserable. And feeling totally blind-sided by how sick I still am post-surgery. It is difficult to do anything other than literally survive. I just finished operating in survival mode for over a year while on the Rocephin. I do not quite have the emotional stamina for another round of this. I will say that I have been doing a better-than-usual job of honoring my body's clear orders to rest and sleep, but it is soooo hard! Last night, as I was listening to my healing well from surgery meditation CD, I found myself saying to the narrator, 'Shut up!'. Guess I need to give that CD a little rest.

I put in a call to Dr. Complex just to let him know what was going on. I continue to be so impressed by his office and its staff. I spoke with his nurse, who gave me the news that it could take me up to six weeks to start to feel better. It can take that long to clear the anesthesia from the body. She said the most I can do is try to eat healthy and listen to my body. And wait.

I also spoke to the nurse today at the surgeon's office while she was removing my stitches. She also felt that it could take me a good six weeks to really turn around. She felt that the more compromised our bodies are to begin with the harder it can be to come back from surgery. How 'fluffy' we are can also impact the speed that anesthesia clears the body.

Both nurses were very empathetic and took me very seriously. I was just a bit disappointed in the news!

When I considered getting the port removed, I heard 'outpatient surgery' and '20 minutes' and just a little 'conscious sedation'. I thought, 'this will be a piece of cake!'. Oh, Emily, Emily, Emily. My kind friends have reminded me that surgery is a quite unnatural thing for the body to endure.

I KNOW it was the right decision to get the port removed. I am not using it. Getting it flushed monthly is a hassle. I don't like the physical look of it. And most of all, if I'm not using this foreign object in my body it needs to go. I don't want to risk getting an infection in my port.

I'm just terribly disappointed. There is nothing romantic or glamorous about being sick and 'resting' day in and day out. It is boring, exhausting, uncomfortable, discouraging, lonely, sad and isolating. I don't know how to explain it, but as my friend R says, 'Beings sick is hard work!' It has been so hard not be able to watch TV or to be able to communicate with my friends and family other than through FB check-ins.

And while I do my best to take things one day at a time, I admit that I had begun to look forward to the coming month. Before surgery life had become bearable again with moments of joy and even fun. I was regularly going to the Farmer's market with Mom, listening to a complicated book on CD (which now sits unfinished), enjoying more complicated movies, shopping for new Spring non-Pajama clothes, doing little bits of yoga stretches, and overall feeling a bit more human. My days were still hard and still a struggle, but so much better than they had been during the Year of the Pajama.

Mom is officially scheduled to have her cervical fusion done on May 17th (more on this to come), so we were eagerly anticipating a trip down to Dr. Complex (we make these into mini-vacations with a nice hotel room, a nice dinner, and just a little time away from the house. We were even hoping for a stop at the outlet mall to one or two stores.) as well as some time without a lot of scheduled appointments. We had really begun to look forward to and feel excited about spending some time together before her surgery. Time that wasn't with me being so sick.

I will be blogging as much as I am able in between resting. I've definitely pushed it to the limits tonight trying to write this, but I've also been so sad to be so out of touch with all of my peeps. I miss you all and miss being engaged in your lives. Thanks to all of you who faithfully check up on me on Facebook, text me, and email me in spite of my silence on the other end. Your news from the outside world provides much sustenance during the long days right now. I am soooo glad my Dad and Abbie got me a Droid to keep me connected. 

I do wish I had better news to report. However, by NOT saying how discouraging this experience has been I was finding myself more and more lonely and isolated. Thanks for listening, and thanks for your love and support.

Blessings,

Emily

Goodbye, Port! (Post-Surgery Check-in)...

The port is OUT! 


Surgery went very well. Super, in fact.


I even got to see the port before they readied it to send off to the lab for testing. The experience with the staff was a positive one from start to finish. They sure do like to kick you out of there though before you are barely even awake! I didn't even feel nervous this go around.


Recovery has been a bit rougher than we expected. 


I would say that 2 Versed + Fentynal + Propofal + Cipro + 12 hours without fluids + an incision on my upper left chest + multiple stitches = a very dizzy, weak and uncomfortable Emily. So, basically, if this post makes no sense, I blame it on the drugs! 


I am not a big fan of days during which it is difficult to sleep, but I'm too tired and sick to watch TV or 'do' anything.  I also did not think about how difficult it was going to be not being able to sleep on my left side for a while again. 


I was finally feeling well enough to pop online long enough to check in with a quick update. My discharge papers say I can't go back to work for another week (???) or lift Asher for a week :( (this is a hard one since he can't jump up on the bed right now!).


Thank you all for your good thoughts, prayers, FB posts, texts, and emails! You all rock!!!!!! 


Hopefully by the time you are reading this on Wednesday morning, I will have started to detox from all of the sedation and be feeling a LOT better. Hopefully Mom will also be feeling some serious pain relief after her long-acting epidural injection in the morning. 


We have a fresh pot of homemade chicken noodle soup/Jewish Penicillin that Mom made to help us both heal.


Blessings,


Emily

Port Removal

The port

The big news here this week is that I met with the surgeon on Thursday about getting my port removed. I didn't expect to be able to schedule the removal so quickly, but I will be getting my port out on TUESDAY of next week!!


At my last appointment with Dr. Complex we discussed whether or not we would need the port for anything At this point we can't see needing it again, since the IV antibiotics were not successful.


I am very ready to have the port removed. As you can see, it is a fairly visual reminder of what I endured last year. I will definitely still have a scar, but I will be grateful not to have the visible bump where the port is located, especially in time for Spring and Summer. I don't necessarily mind if people see it, but I know that some people are very uncomfortable with its appearance.


The same surgeon who removed my gallbladder and inserted the port will be removing it, and I'm very, very comfortable with his skills. The removal should also be a LOT easier than the insertion. The procedure can be done at the outpatient surgery center with a local anesthetic and some sedation. It is also only a 20 minute procedure. 


I am definitely ready to have this foreign object out of me, be done with the monthly home nursing visits, and put this piece of last year behind me.

Port scar (lots of scaring from having it accessed so many times last year).

Mom will be getting an epidural the following day at the same outpatient surgery center, in hopes of relieving some of her debilitating pain from her lumbar spine compression. The last injection, a caudal steroid injection, didn't bring her relief, nor has the neurontin she has been taking.

We feel a bit like all we do is manage our health issues and go from appointment to appointment. Even Asher has not been feeling well!

After a month of feeling much improved, I've had a setback that has lasted the past two weeks. I'm not sure right now what is causing it, but it has certainly been disappointing, especially after having a taste of feeling a little better.

And that's the quick update! 

Blessings,

Emily

Rocephin and Eat, Pray, Love...

View from my recliner in the den, where I spent a lot of time during the Year of the Rocephin.

Did the Rocephin help? 


I've never really answered this question in my blog, partly because the reality is that I did not see any significant improvements from the Year of the Rocephin.


I do have much less neck pain. I slept better while I was on the Rocephin. And I had a lot of improvement in my Diabetes Insipidus-type symptoms. I did not have what we had most hoped for: an improvement in my ANS issues, especially my ability to sit, stand, and have less autonomic instability overall. 


Since stopping the Rocephin, my sleep reverted to being extremely problematic and the Diabetes Insipidus-type symptoms returned. Dr. Complex feels that the DI symptoms stopped because the Rocephin had an effect on my brain that reduced the symptoms, but it did not deal with the underlying issue. 


When I first met Dr. Complex he asked me what changes, if any, I had noticed while on the Rocephin. As I described the small changes, he said: If I was going to put myself through that sort of treatment, we want to see more than just a couple of small changes. We want significant changes. He has expressed sympathy and frustration for me.


On top of not seeing significant improvement from the Rocephin (and having no idea if I killed off a bunch of Lyme spirochetes or not), I'm also now dealing with a lot of collateral damage and much more deconditioning than I started with before I started the Rocephin.


I went into the treatment with my eyes wide open. I knew that it might not work. I knew that it was a risk. I tried very hard to make the best of the Year of the Pajama. I tried very hard not to have any expectations.


Still, I started the Rocephin right before my 34th birthday, so I focused on 35 being a new beginning and a celebration of feeling better. I often dreamed that I would feel well enough to have a lunch with my closest girlfriends from near and far. I bought the Joshua Bell tickets hoping I'd feel a lot better than I do. 


I don't regret my decision. Trying to treat Lyme disease can be a total crapshoot, and I made the best decision I could have with the tools available to me at that time. For many, Rocephin works amazingly well and many Lyme patients would give anything to have access to the treatment I received. What's so incredibly frustrating is that what works for one patient doesn't always work for another, and finding what does work is often based on trial and error. That's just the reality of where we are at scientifically in how to treat this illness.


As I move farther away from the Rocephin and my body has had time to find a new baseline, it has become very clear that the treatment wasn't very effective, if at all. 


Despite trying desperately not to have any expectations for how I would feel, I am incredibly disappointed--okay, devastated--that I put myself through a year of absolute hell only to still be this sick, and starting all over with a new treatment.  Along the the physical collateral damage, I've been dealing with a lot of emotional collateral damage.


The combination of realizing that the Rocephin didn't work and Mom's heart attack has amplified all of my feelings about life and how to live it well given this illness. I am seriously having an existential crisis! :P Before I even stopped the Rocephin, I had already planned my next step: to see Dr. Complex. So, I immediately went from one treatment protocol to a new and different one. Our basement flooded. Mom had a heart attack and other complicating health issues to follow. Neither of us has had a chance to even process what has happened. Until now. And it's been hitting me like a Mack truck!




When I started the Rocephin, I considered it an opportunity to take some time to truly 'be still'. I thought I'd 'get Zen and all that', watch lots of good movies, listen to all of those books I wanted to, learn to meditate and take time to pray. I was going to come out of the Year of the Pajama like Elizabeth Gilbert at the end of Eat, Pray, Love! Seriously, I do not know what I was thinking?! The reality was that I didn't have energy for anything other than absolute day to day survival and finding some way to 'get through' the hell that so many days felt like.


I guess the Eat, Pray, Love journey waited to start until after the Year of the Pajama? Except I haven't gotten to go to Italy. Hmmm....


Because of the demands of my own new treatments, Mom's many health issues, a lot of medical appointments, as well as the emotions I've been feeling, I've been unable to do email at all lately. (I absolutely hate this, and hate not being able to keep up with my loved ones.) 


I always feel a bit of trepidation when I blog openly about the my chronic illness experience, but I also know that I cannot sit in pain silently. I also know that energy-wise, blogging is my only way of staying in touch. So, I hope over the next couple of weeks, to be transparent and honest about what I am feeling.


Thank you for your continued Love and Patience.  Lisa had NO idea what light she provided in my darkness the night of the Joshua Bell concert!




Blessings,


Emily

The Dr. Complex Appointment

Hyacinth at the Arboretum last summer.

Many of you have been asking me how my appointment went with Dr. Complex, what the treatment plan is at this point, and other questions. We've been back from the appointment for over a week now, and I've been plunging into the the treatments, some with better outcomes than others!


As I've mentioned before, what I like most about Dr. Complex is his holistic approach and his willingness to tune into me as a human being struggling with a difficult, complex and debilitating illness. While he continues to treat me as if I have a vector-borne illness, he is more focused on how I feel, not what we call the illness: "It's not about what we call it, it's about how you feel. It's about whether we can make you better."


Because Lyme is so nebulous, so difficult to pin down, so different in every individual,, I really appreciate this perspective. Lyme affects each person so differently.


At our most recent appointment, we met with Dr. Complex for a little over an hour. He runs on time, he is incredibly focused during the appointment, he listens very carefully, he is open to questions, he carefully answers questions, he shares and explains all of the test results, and finally at the end of the appointment, he goes over the treatment plan in detail while writing it down. 


I like this a lot. I'm exhausted and confused at this point. I really don't know what the 'right' answer is. There is no blueprint for treating Lyme, so it helps me to have someone who is directive, while still being open to the specific challenges of MY body.


I think for our family, our biggest questions concern the use of a lot of supplements. 

Hyacinths at the Arboretum this past summer.

However, what we do know at this point is that the treatment I was doing (very traditional) wasn't working for me. We also know that from my reading of other patient's stories, many have done very well when they take a more holistic approach to treating their illness. Lyme doesn't operate in a vacuum and it can, and will, effect every system of the body if it is given the opportunity (in my case it was!).


It's been very difficult to transition immediately from one treatment journey (the Rocephin) to another without a break. It's taken a lot to plunge into this new journey not knowing what the outcome might be.  At this point, I'm not able to really evaluate the treatment regimen. I'm still in the 'waiting' period, which Dr. Complex certainly gave me a heads up about! He was very clear that in the beginning things are very slow. (Boo!).


I feel like I went from one huge leap of faith by doing the port and the IV Rocephin to another huge leap of faith. Right now, I really want to give this treatment plan time to see if it is a fit for me. I continue to need and use a huge amount of my energy to manage, implement, and actively participate in this new treatment plan.

More of the same Hyacinths. They remind me of my time spent in Ireland.

The tests: Dr. Complex has done a lot of tests, some of them very different than ones I have had done previously. According to his testing, the one lab found a rare strain of Bartonella  (another tick-borne illness). Dr. Complex believes that the Bartonella could be contributing a great deal to many of my symptoms, especially the bladder issues and endocrine problems of Diabetes Insipidus type symptoms. Most Lyme patients have multiple tick-borne illnesses, so I was very grateful that Dr. Complex really looked into which ones might be contributing to my inability to get well.


He has thoroughly checked all of my basic (and more) blood work, as well as done additional testing for adrenals, thyroid, Vitamin D, etc. Somehow (even to his amazement, I think), my thyroid is still holding up, but my adrenals, well, not so much. Through his eyes, many of the tests, as well as my clinical evaluation, point to vector-borne illness and I will blog about this separately for those of you who have asked me about this.


The treatment plan: He uses both traditional prescription medications and supplements. He has not fiddled with my prescriptions much at this point.  Right now I am on several supplements, which I started after my first appointment with him. I have added them in gradually over time and, for the most part, have tolerated ALL of them extremely well. This is amazing!


The supplements include things like magnesium, taurine, pregnenolone, and high doses of Vitamin D and Vitamin B12.  I also did a round of homeopathy. Each supplement is targeted at helping to restore some of the ways in which my body has been depleted over the years, including my adrenals. Magnesium, Vitamin D, and B12 are pretty common supplements for Lyme and CFS-type illnesses. For the most part, all of the things he has prescribed make very logical sense. It makes sense to me that if I'm not detoxing properly, or I am deficient in vitamins, or my adrenals aren't working properly, my ability to both heal and feel the best I can is compromised. My mom's impression of Dr. Complex was that he had a 'common-sense' approach to things.


He also prescribed Cortef (basically cortisol, which is produced by the adrenals) in a very teeny dose in hopes of supporting my adrenals. Our adrenals are made to have short bursts of fight or flight. They are not made to function for 12 years in fight or flight. My cortisol levels are very low during the day, peak late at night (yup, this is probably why my sleep is totally screwed up!), and are pretty much non-existent in the morning (again, why I can't get up in the mornings!). However, I only lasted one day on the Cortef this weekbecause my reaction to it was so bad (nausea, nervousness, forceful heartbeats, insomnia, racing mind, moodiness, and major fluid retention). We will have to re-evaluate during our next phone consult.


Trying to decide what treatments to try first and which aspects of the illness to tackle first is a bit like 'playing a game of pick-up sticks' as Dr. Complex puts it. My case is so complex and I'm so sick that it's difficult to know where to start, even for him!

Yup, more Hyacinths. Too cold to go outside right now and take any photos!

We will continue to use antibiotics. Right now I am still on Zithromax which I was on during the Rocephin treatment also. Before the new year I increased my dosage to 1/2 tablet every day, and even struggled with this. The goal is to get me on 1 tablet daily.


I will also be using an antibiotic called Rifampin to target the strain of Bartonella. In early January, I started the  Rifampin at one tablet every other day. I had a miserable herx, which included a major increase in my Diabetes Insipidus type symptoms. Many nights I was up peeing about 8 times. Whew.


So, I stopped the Rifampin and I will restart it in a completely different way. I will be doing what Dr. Complex calls "Dot Dosing". I will literally open up the capsule, poor it into a little container, dip my index finger into the powder, and put that teeny amount onto my tongue. If I tolerate this baby dose, I will increase it bit by bit. I think my sensitive body will be very happy about this!


The new approach to antibiotics is very different from what I was doing previously. And, while many people believe long-term antibiotics are a no-no, it's the best defense we have. Dr. Complex said they won't make 'my liver fall out' as the anti-Lyme folks claim.


I asked Dr. Complex how he felt about me needing to feel sick on the antibiotics to feel better and how much of a herx was acceptable. He said that clearly I had tried the approach that says you need to feel a lot worse to feel better and it had not worked for me. This time around we will focus on trying to introduce antibiotics slowly, at my own pace, and without making me too sick. Dr. Complex feels that oftentimes pushing too hard with the antibiotics can backfire, leading us to relapse more because we keep having to back off and start again.


I am very, very relieved at this new approach because, quite honestly, I'm not sure how much more I have in me to do the grueling type of treatment I did on the Rocephin. 


I desperately want to find a better balance between trying to forge ahead with treatment and finding some quality of life. Quality of life is number one on my priority list and was my number one topic of discussion with Dr. Complex. He really 'gets' this part of things. He looked at me and said, "This isn't a life." He 'gets' the weight of dealing with this for so many years. 


Now, I'm just trying to stay patient and hopeful while I wait for the logarithmic part of things to kick in! I am also grateful for your continued patience and hope as I embark on another treatment journey...


Blessings,


Emily

Dr. Complex Follow-Up Appointment

New Slippers. I think these are like wearing a smile on my feet!
 And since today was a pajama day, I thought this was a fitting photo.

Mom and I just returned from my second visit with Dr. Complex. We drove down Sunday afternoon, hung out in the hotel, went to the appointment early Monday morning, and then headed straight home. We had great weather for travel. Mom was able to take me this time, so she got to meet Dr. Complex, which means now both Dad and Mom have been able to meet him. I did really well overall, as far as getting through the trip. In some ways I felt well enough to enjoy getting away and being in a place free of my piles and to-do lists! We even stopped at a Starbucks (my first time ever at one) on the way home for some tea and lunch.

We have started staying in hotels geared towards business travelers that have a partial kitchen, table and chairs, living area, separate sleeping area, and bathroom. This gives us each a sleeping space (I am spoiled and always get the bedroom with the king size bed and Mom or Dad sleeps in the living area) so that we can get the rest we need. It makes the trip a little bit more like a 'vacation' if that is possible. The suite at the hotel we stayed at this time was HUGE!

I had a very good appointment with Dr. Complex. He is very focused during the appointment, gives you an hour of his undivided attention, listens well, answers questions, explains the tests he has done, and sends you home with a very clear and focused plan to follow. I have been making a lot of 'calls' on my own when it comes to medical decisions, so I really like having someone create so much structure. Since my first appointment with him, I have also had phone consults to make changes and tweak things along the way.

He continues to focus on rebuilding and supporting the entire body--dealing with the collateral damage that has happened from so many years of the disease itself and from the antibiotic treatment. At the same time, we will continue trying to treat the underlying infections with different antibiotics. 

This week, I will start by adding in high doses of Vitamin D (my levels are very low, and this is very common in Lyme disease) and B12. 

The new year has been off to a bit of a rough start.  Right after the holiday I started a new antibiotic, but it caused too great of a herx, so we will back off and start again more slowly after I introduce some other things. I also (not so smartly) scheduled five doctors appointments in two weeks, so I am looking forward to the last one tomorrow (cardiology)!  Hopefully I can find a better balance soon.

I'm still processing the appointment (it was a lot to take in!) and will hopefully be able to blog in more detail (or in bits and pieces) after I finish up this round of appointments and have time to process it all. It takes so much physical and emotional energy to gear up for the appointment. 

Just wanted to check in post-staycation. I know I'm not alone in not wanting to be back at work!

Blessings,

Emily

The New Doctor Report: The Forest and Not Just the Trees

During the last several months, I've been searching for a new care team and new ways of looking at my illness.  When I started the Rocephin, I embarked on a journey that I chose as the best possible treatment for me at that time. However, as the year progressed and I found that I wasn't progressing, I began to want something different. What I didn't know. 


I began to feel too fragmented managing so many different specialists. Each of them looked at one little piece of the puzzle, but no one other than Dr. ANS was trying to put the entire puzzle together. When I decided to stop the Rocephin, I had reached a breaking point. I felt that I couldn't go through any more days feeling that awful with no breaks. I was emotionally and spiritually breaking down. 


I felt lost in the system for the first time in a long time. No one was seeing my whole being. No one was tuning into how thin my 'mental toughness' was wearing. I also had a constant feeling that we were 'missing something'.


Now, a year after starting the Rocephin, I'm readying to take a new approach to my illness, to take a new leap of faith, and to make the next best possible decision I can make with the information I have available. Because really, that's the best anyone can do. Am I disappointed in my lack of improvement on the Rocephin? Yes. Big time.

Last week, Dad and I travelled to see a new doctor who specializes in complex chronic illness, as well as misdiagnosed and undiagnosed conditions.   Um, this would be me?  His approach is a holistic one. Patients are more than their illness. Quality of life during treatment matters. The doctor works with several nurse practitioners as a team. He uses a variety of methods from traditional medications to homeopathy to meditation to nutrition (I'm very excited about this part) to encourage the body to heal.


To prepare for the appointment, I spent several weeks assembling ALL of my medical records from the past twelve years! In addition I had to fill out a 15 page assessment form. This is the most thorough and detailed review anyone has ever done of my condition. Apparently my medical records were more than 1000 pages, which was close to being one of the biggest files they had ever received. Yikes.


Before I arrived for the appointment, the medical team met to discuss my case, review pertinent medical records, and think about possible diagnoses. Originally, I was scheduled to meet with one of the nurse practitioners, but because my case was so complex, I actually met with the doctor. Even the doctor teased that he wondered how I had been accepted as a patient because I was SO complex.

I've searched endlessly for a new doctor to look at my case, but it is way more difficult than it sounds like it might be! This new doctor works closely with Dr. ANS, so this is how I found him. Since Dr. ANS has been and continues to be my point guard and most trusted health-care provider, I was excited about this new doctor. Once I had an appointment with this new doctor I felt like I was finally moving forward. 

What shall I call this new doctor? Dr. Complex? Not because he is complex, but because he focuses on solving complex puzzles like mine!

Dr. Complex spent two and half hours with me. After that two and half hours I felt that he had a better understanding of my whole being and all of my symptoms than any doctor other than Dr. ANS ever has. He was able to incorporate all of my symptoms into his diagnosis, some of which no one has ever acknowledged before!

Dr. Complex still feels that this is Lyme disease, but more broadly defines it as a vector-borne illness. Likely I have many other things going one besides Lyme, including Bartonella and Babesia which are other tick-borne/vector-borne illnesses. No other alternative diagnoses came up in the pre-appointment meeting or after meeting with me. 

I think there was a part of me that hoped the diagnosis wouldn't be Lyme disease. That there would be something more easily 'fixed' or 'cured'. 

During the antibiotic treatment, I've been concerned about the effects it had on the rest of my body. Part of the reason I stopped the Rocephin was that I felt my body couldn't take the assault any longer.

The first step in treatment with Dr. Complex will be focusing on all of the collateral damage from so many antibiotics. We will first focus on repairing my immune system and gut, helping with detox, lymph drainage, allergies and other areas. We need to prepare my body to eventually (and hopefully soon), continue on antibiotics to treat the infections themselves.

Dr. Complex has started me on several supplements (one at a time, so that I know I am tolerating them), in addition to homeopathy.

As we begin this new journey, only time will tell if this approach is a good fit for me. Dr. Complex felt that I was an extremely complex case (which is still very hard to hear). "You're a very interesting case medically," he said, "But I'm sure you'd like to be interesting in a different way." He can't make me any promises. And if he did, I'd think he was full of hot air anyways.

What I like the most and what I've long been searching for is another doctor, beyond Dr. ANS, who can see the forest instead of just the trees. And Dr. Complex certainly does this.

The office is very structured, organized, and team-focused.  The follow-up care even includes filling out a form before each visit, documenting your symptoms, response to treatments, etc. that is then discussed at the team meeting before your appointment.

I left with a very detailed, direct, and focused starting plan, including tests that I needed done and clear directions and descriptions of the treatments we are starting with.  This is a big change from the way things have been previously, where I've often been left with a lot of information to sort through on my own and make my own decisions. It's great for me to be involved in my care, but not so great when I don't have adequate help making the decisions!

My biggest stuck point is supplements. They definitely make me nervous. That is the part I am processing right now. However, what I have done to my body already is probably no less risky than these supplements. I know that Dr. ANS would never endanger my health or refer me to a doctor he did not trust. 

If I can trust and let go, I think that I have truly found two doctors who will hold me in the palm of their hands, do the best to get me better, continue to look at the forest and not just the trees, and artfully guide and direct my treatment. 

I would really like to write another post about the appointment answering questions such as: why am I such a difficult case to treat? Why does Dr. Complex continue to believe this is a vector-borne illness? What exactly does he mean by vector-borne illness? Why is this illness so different in each person? What kinds of supplements am I taking?

When I am writing my posts I am usually wondering what questions my readers would ask. So, I'd like to know your questions about my treatment, my diagnoses, etc. to use in that post!! Ask away!

Blessings,

Emily

Photos:  The purple beauty flower at the arboretum. (I think that is what it is called.) I took these photos for you Rachel!