The calm before the storm

For the last 6 days, I have not been Lymeywifey, I have been normalwifey, and it's great! Apologies in advance to those who are still stuck in the depths of Lymeville, I know it can be hard to hear about people doing stuff you can only dream of doing.

So after a period of a few months where I've not really felt normal at all, just constant crappiness and wibbliness, it is a welcome change. I've been making the most of it by going a bit crazy doing stuff- I know it won't last and grimness is on the horizon when my new drugs arrive and I can start my slime blob (Protomyxzoa rheumatica) regime.

In a fit of athletic prowess, I decided to walk up our local wee hill with kiddo in the backpack. I was sort of anticipating leg meltdown halfway and having to turn back, but I just kept going and we made it to the top (and back again). Fantastic. While I was in remission I was doing that and the neighbouring hill about once or twice a week, carrying kiddo and stomping up no bother. Since I've relapsed a year ago, I've been up once, and that was with my partner to carry kiddo and using crutches on the way down. This time I took walking sticks and used them and kiddo ran all the way down, which was a help since downhill is much worse for my legs. I wasn't even broken afterwards! Yeah, I did require a 2 hr nap straight after and was a bit elvisy that night, but basically fine. Fandabbydozy!

Very very chuffed.

The following day we went to a vintage steam fair with friends. I could walk fine, no symptoms at all. was nawty and ate a donut and vension burger- compulsory really, but no nasty effects bar a bit of bloating.  Then that evening we had a rare evening out- brother in law was playing a gig, so we went along. I was super nawty and had a pint of ale, which gave me a hangover, but at least I felt normal for a while. The following day I didn't do a  great deal, but the day after I was raking dead moss from the lawn and hoovering. Granted, I only did a tiny bit of  moss raking and had to collapse on the sofa after the hoovering, but not bad at all. 

Last night the shooting pains were back and I couldn't carry kiddo up the stairs this morning, so I suspect I'm heading for flare-o-clock. I've totally lost track of my 4 week cycle since I stopped doing a diary and was just quite sick most of the time. I'll have to get back to diary-keeping actually.

Dreading the new regime - a completely new set of drugs, most of which I've never tried before. Should be interesting. At least if I herx badly, I know there's still a fair bit of work to do in the war on my various bugs.

Protomyxzoa rheumatica and my new protocol

I'm so excited! And also really rather pooping my pants (not literally, incontinence is one Lyme symptoms I've fortunately not got). I had a lovely wee chat with my LLMD (well, Physicians Assistant) and they have decided to try me out on a new protocol, one rather evocatively named the 'release and sweep' protocol! Bring it on, lets bring out the big guns and get those bad boys blasted.....

Excited and terrified to the point of incontinence, whilst wearing a fleece in really quite warm weather, thus illustrating my reptilian nature.

So, the background to this is I wasn't really recovering from my 'doing too much (Lyme protest), not resting, not sleeping, not eating properly, catching two colds, conjunctivitis and a stomach bug' phase. I hadn't had what I think of as the typically Lymey symptoms back of dizziness/tippy feeling, headache, nausea and night sweats, they had all mostly gone. The nausea and headaches were only there a bit when Herxing. I've still got the muscle twitching (mostly thighs) and some shooting pains through muscles and joints (which had actually increased lately). It's the Elvis legs which had really regressed in the last month or two. I'd gone from being able to walk normally for the majority of the time to only being able to walk normally for a week or so out of the 4 weeks. The rest of the time, I was weak - sometimes too weak to lift a teapot or open a pack of nappies (The nappies weren't for me BTW). I'd been quite fatigued and the legs had reached a point where I was struggling to get up the stairs or walk to the shops (normally a 10 min walk). I'd had to return to daytime naps every day (Thank GOODNESS our two year old is still daytime napping- I NEED that nap). I'd had my thryoid checked recently and that seems stable and not underactive according to NHS reference ranges, and I'd started proper iron tablets to bring my ferritin up, so that just left the Lyme to blame. So I discussed it with my PA.

Luckily she had a plan B. It was a telephone consultation, so I didn't have to travel for it. They had mentioned in my first consultation that they thought I had an issue with biofilms. Dr X thought my plexitis was caused by the Lyme bacteria living in biofilm around the nerve roots in the lumbrosacral plexus. Thus it could come out of the biofilm and start to irritate and inflame the nerves and also pop back in again - an explanation for why my leg weakness came and went so bafflingly quickly. So my legs, fatigue and stamina had got worse whilst most other things hadn't. We had aggresively treated the babesia and had been treating the Lyme at the same time. I think this is why she thought that maybe I had infection with the intriguingly named FL1953. Whilst I'm thinking "what's that? it sounds like a part number for a hoover or a flight number?" she's rabbiting on about anti-protozoal medicines. I only realise afterwards that she was talking about the newly discovered, exciting and mysterious Protomyxzoa rheumatica. 

Highly accurate scientific illustration of slime blob as rendered by our 2 yr old.

Now, I only knew about the existence of this weird and wonderful co-infection because I had a Lyme friend who had it. She was taking Ivermectin for it (amongst other things), which I knew from my dung-pat stalking days (don't ask) as an worming treatment for cows! In case you want to know, Protomyxzoa rheumatica or 'slime blob' as I shall nickname it is a Protozoan- like Babesia or malaria. It produces a very sticky, thick slime or biofilm which can harbour other nasties such as the Lyme bacteria. There is virtually nothing written on slime blob as Dr Fry  who discovered it is still in the process of writing up and publishing his discoveries.  If you want to look it up, I like this Very good talk by Dr Ann Corson on slime blob. These are some of the interesting things that she has said in this talk (the blue text is her, the black text is my comments):

 

This is a prodigious biofilm former that is

incredibly difficult to eradicate

(Wonderful)

Creates a hypercoagulable state

 

When attacked it creates massive Herxheimer

reactions with a tremendous increase in

inflammatory cytokines and a worsening of

hypercoagulability 

(sounds fun!)

 

Found in my patients from western Canada,

England, France and all over US 

(note, Including England which probably means Scotland too)

 

Signs and Symptoms

 Cold hands and feet, often clammy

(Yep, I have this)

 

Poor to “pathetic” capillary refill, skin color changes –

pale, dusky, hyperemic (red), purple, mottled

(I have pale, mottled skin and my capillary refill time is difficult to assess since my nail beds are mostly white anyway, which I guess indicates poor peripheral perfusion)

 

HA, pain behind/in eyes

(not much, only when herxing)

 

Scalp sores

(No)

 

Sinus congestion, PND, teeth pain

(I have had dental pain, still have it now and again, but I felt this was cranial nerve pain from Lyme, often have blocked nose)

 

Palpitations

(Yes, fairly frequently)

 

SOB, air hunger, dry cough, episodic and periodic

(I do get coughs for no apparent reason quite a lot, not always associated with colds)

 

Abdominal pain, nausea, IBS 

(yes, but I thought was due to gluten/gallbladder)

 

Bladder pain/dysfunction, interstitial cystitis

(no)

 

Joint and muscle pain, weakness, twitches

(yes, again I had thought this was Lyme)

 

Profound fatigue, complete loss of aerobic exercise

tolerance

(yes, especially lately, out of breath walking through house, formerly a fit hillwaker)

 

Sweats (night/day), chills, flushes, dizziness

(these have now gone- Babesia related I think for me)

 

Insomnia, profound brain fog, poor balance

(Yes, still struggle to sleep, bit of brain fog recently, still have poor balance, currently failing Rhombergs test)

 

Anxiety, panic, OCD, irritability, agitation, impulsivity,

ADD, emotionality

(no, not really though my other half might say otherwise, I do get bad PMT recently)

 

Hypercoagulability

(hard to say, they always seem to manage to get blood from me, I don't seem to have noticed any blood clots but I am cold all the time)

 

So, I guess I could have the lovely slime blob after all, it's a tricky one since lots of these symptoms overlap with Lyme/Babesia. It's worth a shot though I reckon. They have drawn up a new treatment plan for me which is so incredibly complicated, my brain will implode if I attempt to fully describe it. Basically, it consists of a four week cycle.

 

Week 1 I take antibiotics, anti protozoals and Diflucan. The antibiotics include Ceftin, Septra, Rifabutin and Tinidazole. I am going to give liposomal artemisinin a whirl as well. This is a more potent form of artemisinin which is apparently good at getting through biofilms and is readily absorbed by the gut. According to people who have tried it, it might result in my legs actually falling off, my head disintegrating and an alien erupting forth from my intestines. Something like that anyway.

 

The anti protozoal they have me on is Daraprim (sounds like an X-factor contestant to me). Also 'neutraceuticals' (which include the biofilm busting nattokinase and the blood thinning resveratrol). I don't take all of these things all week, different things on different days. I've not been prescribed Diflucan (fluconazole) routinely before, I'm not that bad with Candida usually. Clearly this new protocol is likely to turn me into 'Mrs Yeasty'. Niiiicee....

Week 2 is Ceftin, Ciprofloxacin and Folinic acid (to stop me getting anaemia from one of the drugs in week 1). Also my jazzy supplements.

 

Week 3 is Coartem and supplements

 

Week 4 is schluplements only (phew!).

 

So yeah, I am expecting to feel like total crap, perhaps be unable to walk at all and have to spend a lot of time in bed. I'm going to look into mobility scooter hire so that I can at least rampage through the shopping centre, scattering terrified grannies and traumatised small children in my wake.....

 

I have no idea how they have decided on this particular combination and sequence of drugs, it's not the stuff I see Dr Fry recommending and I've not been told to go on a no-fat diet (though I am fairly low fat anyway). Perhaps they know things I don't - quite probably since they are actually the highly experienced specialist Lyme doctors and I, erm.. am not.

 

I've finally managed to finish ordering all of these drugs from the various Canadian and US pharmacies, what a Kerfuffle that was - I'm glad I've got my spreadsheet-tastic John who's brain is actually working at the mo (unlike my turgid spongiform grey matter). The good news is that this new schedule is much cheaper than the old one (no more Mepron- wheyyyy!), the drug bill is about £900 for the next four months supply, maybe I'll need a few supplements as well.

I've got to go back in person in September to see Dr X this time (The PA likes to have all her patients periodically reviewed by Dr X). That's extra expense, but this time hopefully I'll be well enough to go on my own (one less flight to pay for) and I can thank them in person for their expertise with a big hug :-).