I have just returned home from a month staying at the beach. The idea of going to the beach for my ME originated several years ago when my former ME specialist recommended that I stay with a “distant relative” for a few weeks to observe whether this caused an improvement in my health. The specialist theorized that some environmental aspect of my home life may have been contributing to my illness. I made a booking for a beach cabin several months ago for the period between mid December 2011 and mid January 2012.
The main problematic aspect of this trip that I envisaged was the transportation of myself from my home to the beach (a 20km distance.) Due to my severe ME, I am housebound and often bedbound and a car ride of 5minutes is normally sufficient to cause post-exertional neuro-immune exhaustion (a crash- and not of the car variety!) I took all the precautions humanly possible prior to departing for the journey, including my Mum departing before me so she could check in and upon my arrival I could promptly lie down. My Dad drove me down to the cabin and upon arrival I experienced a not unexpected case of post-exertional neuro-immune exhaustion.
Some of my personal health related happening while residing at the beach involved after 24 hours the following symptoms: nausea, lack or appetite, an upset stomach and ultimately me not eating anything for 3 days. This coincided with my post-nasal drip not being as severe as normal. After several days I drew a link between these events and deduced that I was perhaps subconsciously swallowing my post-nasal drip as opposed to spitting it out (the process that I do at home.) I then began spitting out the remnants of my post-nasal drip and the new symptoms that blossomed upon arriving at the beach disappeared. I should stipulate that my appetite did not return fully and for the remainder of my stay, my appetite was approximately half of what it is at home. Upon returning home, my appetite returned to its normal level. I suspect that subconsciously, at the beach, I was still swallowing some small volume of post-nasal drip as opposed to spitting it out, perhaps due to my mind conforming to some non-home environment spitting etiquettes.
Unfortunately, my occupation of the cabin at the beach didn’t cause a shift of any of my ME symptoms. I did however enjoy a change of atmosphere, idyllic scenery and the natural salty-water combine gusts skimming across the ocean and then meandering up my nostrils.
I normally experience back pain (although this is completely dwarfed by my ME symptoms) however while at the beach my back aches were barely noticeable. I attribute this to the mattress and chair within the cabin being very soft. This contrasts my mattress at home and chair next to my bed being relatively more rigid. Upon returning home, I purchased a softer chair and I plan to also buy a softer mattress at some point in the near future.
Lyme Disease Test
Three months ago, I sent my blood to IgeneX in California for Lyme disease testing (the basic lyme panel.) The logistical intricacies involved with getting my blood drawn and sending it from Australia to California in the narrowest of periods was problematic however ultimately my blood arrived safe and on time. The Lyme Disease Association of Australia has compiled a step-by-step document detailing how to send blood to Igenex from Australia and this can be found here: https://docs.google.com/a/lymedisease.org.au/viewer?a=v&pid=explorer&chrome=true&srcid=0B0eTEq5NElNcNjJlZTY3YzYtM2IwMy00MDUzLWE3NzItODhlYzliOTc4NTMw&hl=en_US
Further information pertaining to Lyme disease in Australia can be found here: http://lymedisease.org.au/for-doctors/doctors-information-kit-about-lyme-disease-in-australia/ The presence of Lyme disease in Australia is controversial and I won’t delve into the debate.
IgG Western Blot: 31kDa was indeterminate, 41kDA was positive, 58kDa was positive. Overall five bands are required to be positive for a positive test however only two of my bands were positive.
IgM Western Blot: 39kDa was indeterminate, 41kDa was positive. Overall 2 bands out of 23-25, 39, 41kDA are required to be positive for a positive test however only one my bands were positive and one was indeterminate.
IFA B Burgdorferi: My titer levels were less than 40 which constitutes a negative nest.
In total, I reaped three negative tests however my IgM test was not technically definitive.
Overall, my ME symptoms have remained quite static during the past several months. I have trialled a handful of new treatments of late and I will document the rationale behind these treatments and if they had any effect on me in a subsequent blog entry.