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