I've got to squeeze my blogging into my 12 hrs a week that I have childcare (evenings are spent largely comatose on the sofa with a brain comprised of tapioca, so not productive). It's a full time job being a Lymie, angry activist and general troublemaker. I'm not even that ill, I have absolutely no idea how those people who are really really sick manage it - especially those with kids - hats off to you!
In my 12 hours of toddler-free time, I : blog, organize the UK Worldwide Lyme Protest, reply to emails and phone calls of other Lymies and relatives of patients, order and research supplements and drugs (and with a total of 16 supplements/neutraceuticals, 3 antibiotics and 2 anti-malarials, 1 pain drug to keep on top of, this is a lot of work!), count out my handfuls of tablets into my pill box weekly, swallow and slurp said medication with appropriate food at appropriate times, fill in paperwork for my LLMD, go to GP and hospital appointments, decipher medical jargon and read latest developments in Lyme world, make official complaints about lying Neurologists (ha ha lady, you're not getting off that easily!), visit hairdressers and dentists, and sometimes I even get to rest or sleep ;-).
So, what's been gaaaan oon? Well, I had a great phone consultation with my lovely PA (Physicians Assistant) in the states. My routine bloods are fine apart from my pituitary is a bit naughty and is producing too much Thyroid Stimulating Hormone. My Vit D levels are mega low- 15 and they like them to be nearer 100. Googling seems to suggest 30-80 is a more realistic target to aim for, so I'm popping Vitamin D at 10,000 IUD a day with 1g Vit C for absorption. Living in northern Scotland is not exactly conducive to sunbathing, so that's not really an option and you're not getting me on a sunbed, I'm not from Liverpool ;-) Vitamin B12 is also quite low at 492 when it should be more like 1000. I have no idea what units she was talking about by the way, lets call them 'Bobs per Blob' for fun. I also have low ferret (Ferretin and Iron) levels - I'm always losing those little mustelids. So, some work to do there with diet and pills.
I'm still finding it really hard to get to sleep, even when exhausted I lay there for a good 2 hours waiting to drop off. I baulked at the idea of taking the suggested Lorazepam, so she suggested something called GABA and also melatonin. I look GABA up and find it's an amino acid which can be used to down-regulate nervous activity, so is used in anxiety, sleep and as it also increases lean muscle mass, is also abused by bodybuilders. It doesn't seem to be available in many UK internet drug shops. This is apparently either the work of big Pharma taking it off the shelves because it works too well and competes with their pharmaceuticals, or the work of the UK government banning it because of it's use by bodybuilders- depends who you talk to or believe. Sounds good, so I've ordered some.
We had a really excellent conversation about pregnancy and Lyme but this is such a big topic, I'll save it for another post.
Overall though, I'm doing really well on their pulsed regime and I've not had the expected disastrous jelly legs during the one week in three where I don't have any antimicrobials. Infact, the last 4 weekly flare co-coincided with a week off the drugs and I was fearing the worst. We had a long drive down south for a family do and I was kind of dreading it, but instead of the full fat Elvis on a dozen cheeseburgers legs, I had a rather pathetic Shakin' Stevens affair, despite a couple of beers at the do and gluten-tastic food all weekend. Shattered when I got back and could hardly walk for my gallbladder appointment today, but that's not suprising given I had such a hectic time and had to fast for my scan. They said my gallbladder looks fine but is quite 'gravelly'- perhaps I can use it to mulch the garden....
So in the way that cancer patients visualise their tumours and give them pet names, I've been having Marvel comic style fantasies about what is happening within my body. I've called this particular comic strip "Good cop, badass cop".. Good cop is a gentle chap with a soft welsh accent, he comes out on the drugs holidays to coax my various parasites out of their hidey holes. He promises a lovely warm bath for them comprised of antibiotic-free blood and with a side order of vulnerable tissues and red blood cells. So out they trot, my spirochetes, plasmodia and Bart bacteria, they do a bit of line dancing before "SCHLUPP" a white blood cell comes along and gobbles a few up. Then along comes baddass cop, a nasty Schwarzenegger type figure with his heavy artillery of Azithromycin, Ceftin, Tinidazole, Artesunate and his special chemical weapon- toxic sludge Mepron. "BLAM!" "KERPOW!" "KERAAANG!"... the casulalties lay strewn about whilst the rest scurry off back to their refuges of biofilms, blood-brain barriers and connective tissue and they curl up into their cysts. There they sit, hunkering down until good cop comes along again to tease them back out into the open.
Well, with my limited understanding of immunology and overactive imagination, that's how I see it!
I've also been struggling with the whole gluten-sensitivity thing. So, my LLMD says 'most chronic Lyme patients we see have gluten sensitivity". I admitted to having had a couple of episodes where I'd had cramps and trots after eating bread, so they say "lo, you must hereby forgo your lovely comforting delicious toasted bakery products and eat foul, dry, gritty pale imitations instead". Being a bit emotionally attached to toasted teacakes, I am rather reluctant to give them up. I have eaten bread and related goodies loads of times and not noticed stomach issues, so the few times it has happened seems like a price worth paying. Then again, I saw a paper that said that gluten sensitivity can manifest with such strange things as Ataxia:
This paper says:
Most patients who present with neurological manifestations of gluten sensitivity have no gastrointestinal symptoms.
The range of neurological manifestations of gluten sensitivity encountered in our specialist clinic over the past 15 years are listed in table 2. Cerebellar ataxia is one of the two most common neurological manifestations of gluten sensitivity. In a series of 500 patients with progressive ataxia evaluated over a period of 13 years in Sheffield, UK, 101 of 215 patients with idiopathic sporadic ataxia had serological evidence of gluten sensitivity.
So just because I don't bloat like a rotten pig when I eat crumpets, doesn't mean it's not having an effect on me..mmmm.