trip to the East Coast - part 2

Our Individual Appointments

This post has been weeks in the making...my brain can only handle short spurts of generating words and ideas, and actually sorting them out is frustratingly difficult. A lot of 5 minute typing sessions, copying and pasting, and rearranging has taken place, so I hope the following makes some sense...

My (Melody) appointment was first. It was rather sobering to have so many things in my physical exam be weird or abnormal, but in a way it was reassuring that yes, what I'm experiencing is very real and measurable. After examining me and learning more about my history and the severity of my symptoms, the PA exasperatedly (and compassionately) said, “You are very sick.” When Dr. J. entered the room to meet me, I was introduced as, "this is Melody, and she is really sick.” Dr. J agreed after hearing my "story."

We have been well aware that I am very sick, but to hear it repeatedly that day with Dr. J and his PA was kind of sobering. I don't want to be one of the really sick ones, but, seeing that I am, it makes us all the more glad and thankful that Dr. J, an excellent Lyme doctor, will be the one treating me. God is SO good to meet our needs and care for us!

Dr. J's PA was incredibly thorough throughout the exam and asked great questions. We really appreciated how easy she was to talk with and how understanding she was when I was too spacey to understand a question or articulate an answer. Spencer was great at helping me explain symptoms and go through my nearly 8 year long case history.

Dr J and our local doctor wanted me to have a MRI of my brain and to see a neurologist because of how bad my neurological symptoms have gotten, just so we can be sure to rule out any other cause for my symptoms. Also, based off of my many symptoms, they agree that I have Babesia (a malaria-like illness that is another Lyme co-infection) and will need to be treated for that in addition to Lyme and Bartonella.

**I have since had a MRI and a consultation with a neurologist. The neurologist actually believes that Chronic Lyme Disease does exist. He mentioned to us that many of his peers in neurology do not believe in a chronic, persistent Lyme infection, especially neurological Lyme, but that it became very real and serious to him after he witnessed some of his relatives suffer from it.

After going through my case history and test results, he was confident that we could rule out any other neurological issues and that Lyme was the cause of my neurological symptoms. It was good to know that we could rule out other causes, but also kind of frustrating...not that I want to have something else, but I'm just so weary of battling Lyme and discouraged by how long and hard of a battle we've been warned it will continue to be...I was almost hoping something else might be found that could be more easily treated.

My MRI came back normal, which surprised all of us, as Dr. J suspected I'd have lesions on my brain. We're definitely thankful that I'm lesion-free, but it doesn't really change the fact that I'm struggling immensely and have major neurological involvement that we need to deal with.

The basic conclusion of my appointment was that I am too sick and fragile to undergo aggressive treatment for the time being. Frustrating, but understandable. Dr. J wants to get my pain under control and get me sleeping better, as he feels that as long as those two issues aren't resolved, my body will be too weak and compromised to tolerate the aggressive treatment (IV antibiotics) that my body so desperately needs in order to get well. Most likely in a couple months, if we can get my body stabilized enough, I’ll have a PICC line placed and begin IV antibiotics.

So, our focus has been on pain and sleep management. We’re also working hard on getting my poor GI tract in better shape. I’ve been having a very rough time with eating, swallowing, and severe abdominal pain (h. pylori test came back negative), thus am not getting enough to eat and we're not sure whether I'm even absorbing what little I do eat - I have lost nearly 20 pounds over the past year (20 lbs that I couldn't spare in the first place). Both Dr. J and our local doctor have been working to help me with this. So far, little progress in gaining weight, but at least I have stopped loosing additional weight, which is a blessing.

I was given a list of supplements and herbs to take and was told to continue eating gluten-free. Dr. J also started me on Lyrica to help with my nerve pain and sleep. He took me off of Biaxin and Rifampin to give my body a break and started me on a low dose of Amoxicillin - not to really kill anything, but rather to help keep the infection under control while we focus on pain and sleep management.

Within a week or so, my symptoms really got out of hand, similar to how they did back in March when I was taken off of Cipro. Dr. J and my local doctor agreed that the Amoxicillin wasn't enough and they decided that I should go back on a low dose of Biaxin, which is active against both Lyme and Bartonella. It has done a better job at suppressing some symptoms.

Since then, I have had a phone appointment with Dr. J, but that's for another day and another post :)

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Spencer’s appointment also went very well. The PA and Dr. J both agreed that he definitely has Lyme. They are hopeful that he’ll be easier to treat than me, but warned us that it will still be a rough time. They're pretty confident that he contracted Lyme sometime before the onset of his headaches back in 2005, as headaches are a significant symptom in Lyme Disease. Crazy, huh, that we both contracted Lyme independently and then wound up together?

Thankfully Spencer's physical exam findings weren't quite so abnormal as mine, but we're thankful for how thoroughly he was examined to ensure nothing was missed. As we explained his case history to the PA, it really dawned on us just how much Spencer has declined over the past few years. For a long time, we had attributed his decline in energy and concentration to the stress of having a sick spouse, being a full time student, and working to support us. But as we looked further back and talked with the PA about his history, it became painfully clear to us that his cognitive function and energy levels had been slowly slipping for years, long before we said "I do" and my body crashed.

We were thankful for how both Dr. J and his PA really took Spencer's headaches seriously. He saw a neurologist several years ago for his headaches and was told that the cause of his headaches was unknown and that he'd just have to live with them and try pain medication. We're so thankful he's getting the attention he needs to hopefully do away with the cause of this horrible, 4-year long headache!

Going off of symptoms and the progression of his case, Dr. J and his PA feel that Spencer also needs to be treated for Bartonella and Babesia. At this point, they're thinking he will only need oral antibiotic treatment. It will be very aggressive and not easy to tolerate, but we're thankful that it's not looking like IV treatment will be necessary for him.

He was also given a list of various supplements that would be helpful, especially regarding sleep quality, as his has been pretty poor lately. He also needs to not eat gluten. Seeing as we've already been eating 90%-ish gluten free for the past two years anyway, not a big adjustment for us. Dr. J mentioned that he feels gluten is a big problem for most Lyme patients.

We looked at how Spencer's treatment had progressed from his diagnosis in March up until that point (about 3 months treatment total) and how we had seen little to no change, good or bad, in his symptoms. Dr. J explained that he felt that Spencer had been on dosages of antibiotics that were too low to really kill off all that much and that instead, the Lyme spirochetes (bacteria) converted to the cyst form in order to survive the hostile environment created by the antibiotics.

This led to discussing Spencer's lack of die-off reactions (herxing) to treatment in the past and Dr J and his PA agreed that the lack of herxing was most likely because not much was being killed off in the first place. Makes sense. Dr. J then turned to Spencer and sternly, but humorously, said, "I'm going to MAKE you herx!" Although it was really funny to hear the famous Dr. J threaten Spencer with a horrible die-off reaction, we did wonder just how bad it would be...

Dr. J started Spencer on an aggressive oral antibiotic regimen, in which high doses of 3 different antibiotics are "pulsed" 3 times a week for 3 weeks (Omnicef, Mycobutin, and Doxycycline) and then, on the 3rd week, add in Flagyl, known as a "cyst buster." Basically, Flagyl is able to force the Lyme spirochete out of the cyst form, making it vulnerable to the the other 3 antibiotics that Spencer is on. After a week on Flagyl and the other 3 antibiotics, Spencer has a 1 week holiday to give his body a break and then back to another "cycle." He sees Dr. J later this month at the end of his second cycle to evaluate how treatment is going, go over test results, and make revisions/additions to his treatment plan.

I'll hopefully soon(ish) update on how Spencer is doing on his treatment, how I'm doing, and how my phone appointment with Dr. J went.