I am house bound today. But not because of the snow. Nope. I'm more or less unable to get out of bed again.
A nasty flare in my symptoms has left me with disproportionately swollen hands and feet. I have nerve and bone pain that is earth shattering. As in "I am desperate to crawl out of my skin" type of pain.
I'm not exactly sure what is the cause of my flare up other than speculating with an educated guess. This disease cycles with symptoms intensifying every 4 weeks. This is my 'flare week'. When I am on treatment these flares are called herxes and are far worse to endure and my symptoms are far more exacerbated than when not on meds. I am hopeful this flare will be shorter and not as long as usual given that I am currently still on a drug holiday from my IV treatment.
I am hoping, praying, dreaming of a herx-free Christmas!
I had my monthly phone appointment with Dr H this week. I was fully prepared to be told that my drug holiday was effectively over. In fact, I rather expected him to very loudly and very forcefully tell me to get my butt back on IV. However, I got a pleasant surprise.
Surprise, surprise, my drug holiday has been stayed...at Dr H's recommendation!!
Could have knocked me over with one of the feather's from my chicken coop!
Dr H is very pleased and relieved with the progress I am making on this detox regimen. Did I mention he mentioned he's relieved...over and over?
His relief was palpable. "I am so relieved that your body is handling the effects of detox. I'm actually really relieved and totally shocked. After how sick you became this fall, I fully expected that I was going to have to hospitalize you in order to detox you."
I had an appointment with DR A after my appointment with Dr H and he too admitted that he had been very concerned that another hospitalization was more likely than not. He's relieved that I am responding to detox in a non-death defying sort of way too. Phew! Me too. In fact I think there are a whole whack of us relieved that my body is better handling the effects of detoxing this time around.
Thankfully, this time around, I am remaining semi-functional in my detox dysfunction. Currently I am averaging about 3 'good' days a week. This is in vast contrast to this past fall when I was essentially bedridden for 6 weeks straight. However, detox is still no picnic in the park. And it is moving at the excruciatingly slow pace of a snail. My lymph system is incredibly sluggish. It took 8 lymph drainage massage sessions before my system even started to budge. My therapist kept commenting on how I respond the exact opposite of any other patient she has ever had.
Phooey! Welcome to my world. I am a medical anomaly of abnormalities!
Most folks are exhausted after lymph massage, I come out feeling high. Most folks lose weight, I swelled up like a balloon and gained 12 lbs. Most folks find relief from joint pain, I leave my massages so gimped up, I can barely walk. Most folks consistently improve with each session. I, on the other hand, am only consistently inconsistent. One week, I'm lumpy and bumpy. The next, I'm boggy and puffy. Currently, I'm mushy and spongy. (Thank you to my therapist for providing me with these very technical terms!) Most folks find massage relaxing, I shake and quake and cringe.
Yes, I am probably the only person in the world who does not find massage a blissful experience. Dr H has extended my drug holiday until Jan 10...provided that I continue with his prescribed detox protocal. He would like me to continue with the detox regimen until my body is able to efficiently detox, either on its own or with the continued support of the therapies I am currently undergoing.
After Jan 10, I will re-start on my IV treatment. I will be going back on my old friend IV Rocephin and adding in a new IV med, either IV Azithromyacin or IV Clindamyacin. (We'll be going with which ever one is the cheaper of the two)
I have some anxiety about starting up the IV meds after being on holiday so long. However, DR H has assured me that my response and herxing will be less severe. He believes that the intensity of my herxes over the last couple of months, have had more to do with my high level of neurotoxins than it being the result of high levels of bacteria dying off.Dr H believes that I became so violently ill when we started detox earlier this fall because we were still maintaining a hardcore bug killing regime. He surmises that my body is not able to handle both detox and bug killing together. At the time, my lymphatic system was too clogged up to effectively eliminate toxins from my body. The more bugs we kill, the more toxins they release. Because those toxins were not being expelled, they remained trapped in my body where they had nothing bettter to do but wreak constant havoc. He assures me, that once we get my lymphatic system moving, my herxing will be more manageable once I re-start IV.
DR H explained that Lyme is a battle that needs to be fought on 5 different fronts.
1. Bad Ass Bug Killing (his words, not mine!) 2. Tartgeting Biofilms 3. Decreasing Bio/Neurotoxins 4. Regulating Immune System 5. Supporting Impaired Physiology
As long as we are working on 2-3 of these at a time, then we are still fighting Lyme and not losing a lot of ground in the overall fight. Of course hard core bug killing is the top priority. It is the fastest way from point A to point B. However, expelling those nasty critters from my body is equally important. Which currently makes detoxing our top priority.
Hence, my drug holiday has been stayed. And so I am hoping, praying, dreaming of a herx-free Christmas.