Wednesday, 17 July 2013

Herxing, holiday and health again.

At last - all the drugs in my treasure trove of pharmaceuticals had finally reached me from the far corners of the globe. I had my new 'release and sweep' Protomyxzoa rheumatica-busting protocol in place and was ready to roll. On my holidays. Marvellous timing. Well, at least I'd have John on hand every day to help out with tiddler while I fell to bits in lovely North Yorkshire. We didn't have to catch any planes and had rented a little cottage so at least it was a low stress herxing hols.

I'd heard such doom-laden things about tackling this beast that I was prepared for the worst Herx ever. For the miniscule percentage of people that are reading this blog who are not familiar with what a 'Herx' is, it's more properly called a Jarisch-Herxheimer reaction. It's when the Lyme bacteria gets killed and all the bits of bacteria cause a huge amount of inflammation in the body which can really make you very ill.  Conventional wisdom would have us believe that this phenomenon only happens with a few spirochetal bacteria such as Lyme. However, Lyme patients report it happening when they also target co-infections, and I think I had a Babesia herx when I first took Mepron to nuke my Babesia.

So, I'm geared up for a bad time.  A wheelchair, crutches, painkillers, heat patches, slobbing clothes, lots of lemons and Chlorella vulgaris are not things I'd normally be taking on holiday!

The protocol has to start on a monday, so I have a day and a half to fit in some fun before I enter Herxville. I manage a short 4 mile bike ride on a bumpy narrow track to the nearest village. Very pleased about that- I'd been feeling a bit better recently, so getting on the bike wasn't out of the question. Sunday night I'm counting my multitude of scary drugs into my humoungous drugs box, really pooing myself now.

The Pills of Doom

Like some sort of start-trek breakfast, I swallow my handful of tablets on Monday and fear the worst. Mon Wed, Fri it's Ceftin and Rifabutin. Mon-fri it's Septra, Daraprim, Folinic acid and Artemisinin. I start on just  twice daily 50 mg of Liposomal Artemesinin since I've been told that this is much more potent than normal artemisinin and I don't want to disintegrate entirely. By monday afternoon I'm feeling the effects. Nausea, stomach pains and a bad headache. I can't eat much for dinner. Lots of Lemon water is imbibed. That night I start with the insomnia which is accompanied by a bad headache and weakness. I have pinky red urine that evening, which is a surprise and slightly worrying. We are pretty much without mobile signal so I can't research my red wee on t'internet.

Day 2 and I go daring and up the Liposomal Artemisinin to the full 600mg per day. The frontal headache is quite bad and again, I have nausea, slightly wobbly legs but all over wobbly, not elvis wobbly. I still manage a trip out to a market though, but keep getting these moments where I feel like I'm not really there - I feel like I'm an observer in my life. Wierd-tastic. Again, pee is pinky red. I get a few muscle pains and feel weak. I'm oddly not tired for my afternoon nap (usually I'm desperate for it). Again, I have insomnia much worse than normal and I sleep very badly with lots of dreams and some night sweats.

Day 3, feel bit better, though still have headache and insomnia and feel as if my eyeballs are being pushed out from behind. I'm still twitching a lot in my left eyelid, though this has been happening for about two weeks now, so before the new protocol. Pee dark brown now so I just have to hope my kidneys aren't packing up and it's just some side effect or herxing thing.

Fecked off with the insomnia.

Day 4. Feel lots better, headache still there, pee still technicolour, insomnia still raging but I feel pretty ok really. Very strangely I'm not shattered and needing a daytime nap - infact I try to nap but can't. This is good though since my sister and her gorgeous baby are visiting and I get to spend much more time with them. I have lots of mouth ulcers and am salivating a lot. Like some slobbering bloodhound I am having to swallow saliva at night which stops me dropping off to sleep. Is this drooling a cranial nerve thing or is it the mouth ulcers causing it? I am still twitching in my left eyelid so perhaps my cranial nerves are being Lymed.

Day 6. I start the second week, Ciprofloxacin  and Ceftin week. 500mg Cipro twice a day sun-thurs. Pee stopped being wierd colours after I stopped the drugs last week. I finally get internet access and find out Rifabutin turns wee funny colours so it's probably that. Then later someone else posts that they had brown wee on a Protomyxzoa killing protocol so maybe it's not that. Um...

We return from our weeks hols listening to Andy Murray Winning wimbledon on the car radio (Yey!!). I don't sleep on the journey (I'm not driving!) and when we get home I help unpack the car then go to Tescos to get bread and milk etc. Put the nipper to bed and go to bed at a normal time. This might seem unremarkable to most folk but I am very pleasantly surprised by it- it's been ages since I had the energy to do anything other than immediately lay on the sofa after a trip out somewhere.

I am thinking perhaps the Cipro week won't be fun either, but to my surprise I actually feel fine on it. I still have some insomnia but I am now two days into the Cipro and I just had a two-hour daytime nap, so business as usual on that front. I have quite a bit of energy and don't feel weak anymore- I mowed the lawn- something I wouldn't have been able to do a few weeks ago. I treated the mouth ulcers with Iglu stuff which has helped the slavvering.

Week 3 and it's Coartem week. Yipee, I feel really very good! I manage a 14 mile bike ride (14 miles- get me!!!) and in the middle of it I even paddle our daughter round a boating lake at the park. Hayfever sets in after that and I feel grotty from that and the accumulated lack of sleep but still no leg wobbling (apart from a tiny bit immediately after the bike ride). I am starting to think perhaps I do have this Protomyxzoa bug after all - the herx, the surge in energy and clear head again.

Yeah, I know I've got a flat tyre in this pic. I'll say it again - 14 miles!!!!!:-)

I feel a bit bad posting this herx report as I'm sure most Lymies would have a much harder time on this protocol than me. I think my LLMD is prepared to put me on this rather hardcore regime because they know I don't herx like crazy and I can tolerate drugs well. I put this tolerance down to the fact that my Lyme hasn't ever gone undiagnosed or untreated for any prolonged period of time- I think therefore I must have quite low bacteria levels compared to many chronic Lymies. Then I'm reminded of just how blumin' lucky I am when I get three phone calls in a day from upset mothers of Lyme children and I have lunch with a Lymie. I am so so well off compared - I can afford treatment, I can tolerate treatment and I don't suffer that much with herxing. I wish everyone were so fortunate.

1 comment:

  1. Thanks for sharing your story. I'm so glad you were able to tolerate that protocol and enjoy your life at the same time.