Sunday, 20 July 2014


WWOOOOHOOOO!!!! My appointment with Dr X went really really well. Better than I'd hoped. I am, apparently, 'way ahead of the curve' and 'doing very very well'. I knew the last bit- I FEEL well, but didn't realise I was such a star pupil! well chuffed. 
In Dr X's office after my consultation. 

He's tapering down my treatment to a skeletal antibiotic regimen, including minocycline, which I've not had before. the Mino is apparently for any Chlamydia pneumoniae or mycoplasma which might be lurking. he says it has good tissue and cellular penetration. After a couple of months, I go really skeletal (and I don't mean lose more weight, although with this low histamine, gluten free diet, that is a distinct possibility!) and go to just three days a month antibiotics- mino, rifampicin and septra ds for 10 months.  Woohooo!!! No more purse-busting mepron. he doesn't want to see me back in the office for another year! if anything changes, I am to call the office to discuss, and I know relapses can happen- they've happened to me before, so I'm not counting my chickens just yet.

He says that after 12 months of this skeletal treatment, my immune system should be tipped back into being fully back in charge and I should be 'bullet proof'. The best news is that he said that we could start trying for another baby this year, if we wanted. he said it would be ok, he would treat me throughout the pregnancy with azithromycin and amoxicillin. that reduces the risks to the baby to very small, especially since I am asymptomatic and have been treated for coinfections and biofilm (and I think much more throughly than last time). He supports breastfeeding, thinks it is a good thing, but does treat with azithro and amoxy whilst breastfeeding and recommends probiotic drops for the baby. I asked about risks to John, he says he thinks it is sexually transmitted. he would put john on the same three day a month abx schedule that I'd be on, but would have to see him in person to prescribe that. I will have to discuss with John what he wants to do. I got the feeling Dr X didn't think that in my case, the risks to john were significant, but I'd not want to put him at risk. Dr X says we don't know the size of the risk to partners, and putting the partner on a preventative antibiotic schedule isn't probably ideal, but it's probably better than doing nothing. I agree.

So I'm exceedingly pleased. I'm not out of the woods yet, but I'm close to the edge and I can see blue sky. Our daughter apparently asked John if Dr X had fixed mummy, and did that mean I could go to the woods and up mountains with her now? yes, baby, he has, and it does. Made me cry, she's a wonderful little girl.

I made Dr X a couple of thank-you cards, featuring a photo of kiddo and I up a hill, wearing green and Lyme ribbons, and a green monster that kiddo had made. She'd drawn inside a picture of "mummy's american doctor'. I also wanted to thank him for coming to the UK a couple of months ago to a one day seminar in London. I didn't go, but it was to try to educate our doctors, and apparently, his lecture was excellent. I really hope it has sparked a few of our doctors into being interested in learning more.   

So, what has made my treatment so successful? I think it's a combination of a few factors:
1) I have not gone untreated for a long time before diagnosis and treatment. little permanent damage has occurred. my last ECG was normal, after all of them showing conduction abnormalities, so I think even that has healed. 
2) I have been treated with pulsed, high dose, combination anti biotics and anti malarials/ anti protozoals. ALL of the common coinfections have been targetted.
3) pulsing has allowed for detox and allowed the infections to come out of hiding and cystic forms/tissues/biofilm.
4)supplements and herbals for detox have helped my liver to cope and made the treatment tolerable. I used to think detox was a load of shite, spouted by spa's to get money out of gullible folk. It is, but in the context of Lyme treatment, it's essential. if your liver and kidneys and biochemical pathways aren't functioning, neither can you.
5) sleep management. if you can't sleep, you can't heal. simple. my partner has been an absolute star and has allowed me to sleep in most mornings, which has really really helped. Dr X prescribes things to help you sleep.
6)Biofilm. this is not some half arsed theoretical thing, biofilms are ubiquitous, they are and established medical fact. there's lots of evidence that biofilms are extremely important in Lyme and co, and tackling them is essential to getting at most of the bugs. Dr X's has a very effective biofilm protocol.
7)Support from my family and partner. Financially and emotionally, this has been absolutely key.  If I'd been on my own with this, I'd not have been able to do it at all. I owe them the world and I love them to bits. It's incredibly hard, seeing a loved one go through all of this, and they've been there with me on this rather torturous journey.

My Dr isn't for everyone. I think really fragile patients would probably do better with a gentler approach. if you can't tolerate antibiotics, go elsewhere as he really doesn't use many herbals. if you have a lot of issues with mould, find another doctor. however, for me, he's been brilliant.

The journey isn't over yet, but the biggest bit is done and I feel like I can, at last, live a normal life.

Friday, 18 July 2014


So y'know how in those loony tunes cartoons (of my imagination), they have a little devil on one shoulder and an angel on the other, egging them on? That's me that is. Devil says "ssshh.. don't tell anyone, but you're in remission". Angel says "look, daftie, you've been here before. don't get carried away, love. Remember that time you went to a Lyme conference wearing a badge saying 'lyme free thanks to Dr D' then relapsed a month later? yeah. Calm the F down.


I haven't kept a symptom diary or blogged in a while because A) I've been busy with that thing called NORMAL LIFE ! and b), as the queen of melodramatic health crises, I developed severe asthma and eczema which has landed me in A+E the emergency asthma nurse and meant I've spent a lot of time familiar with the sofa and netflix.

So what's been gaan on? Prior to this asthma shite, I had been feeling pretty normal (insert big fat smiley face). Went camping, mountain biked 5 miles and 13 miles on consecutive days with no after effects (apart from blubbing in the car with the enormity/relief of it all), sorted some of the long overdue things around the house, even bought a new swimsuit in preparation for going swimming with kiddo.

Carried kiddo up our local hill on the day of the worldwide Lyme protests.
Then developed weeping disgusting eczema, an endless hacking asthmatic cough and went and had an asthma attack for the first time in 8 years in the car park of the supermarket.

Brilliant online friends (Lyme disease UK discussion group, you are fab), helped me figure out the asthma/eczema was probably due to an overload of histamine. The health detectives that are my pals and I deduced this was due to 1) Cefuroxime I'd been taking for Lyme which inhibits Diamine Oxidase, the enzyme which normally breaks down hsitamine 2) snaffling an entire large jar of chilli pickled gherkins- very high in histamine plus other histamine containing foods 3) those pesky pollen levels which have been sky high this year and 4) I'm probably one of those itchy wheezy souls prone to this type of thing (history of eczema/asthma/hayfever/dermatographism).

So, the upshot is, I'm in the USA to see my lovely Lyme doctor. I want him to agree with the devil on my shoulder and tell me I'm in remission. Does being tired in the evenings count as remission? (but what parent of a three year old isn't tired in the evenings?). I'm not so great at multitasking and sometimes struggle to find the right word if I'm tired. Maybe though,  this could be just 'me' or maybe permanent neurological damage? I might still have mild insomnia, I haven't tried stopping the bedtime GABA/Gabapentin/melatonin yet as histamine has caused worsening insomnia (who knew?!).

I feel well. I feel like if it weren't for this asthma, I could climb a (small) mountain/tackle the overstuffed cupboards/get on with living completely normally. In the meantime, I'm on a low histamine diet (duller than Melvyn Bragg), antihistamines, asthma meds and a ton of creams and greasy gubbins. I also stopped cefuroxime. Hoping, Dr X agrees and sometime soon, I can start saying the 'R' word out loud.