Serocytol immunosuppressant therapy and Hidradenitis Suppurativa.

I’ve been back to see my Homeopath. I’ve been prescribed a second batch of Serocytols, a Swiss homeopathic immunosuppressant treatment. It is a natural remedy made using blood from immunised horses, who are apparently very well cared for on the Serolab farm. Serum therapy, as it is known, has been around for over a century and was initially used to treat diphtheria and tetanus patients. The development of Serocytol came from this in the 1930’s.

It has no side effects, but I have yet to see any improvement from taking it thus far. I have had a three-month treatment and am about to embark on another three months. It costs me just under 120 euro (about 156 dollars/102 pound sterling) for the three months and I take it orally in a tincture. If you haven’t already read about why I’m taking Serocytol, here’s a little recap.

A good friend of ours, a lovely French man lived in the UK and married an English woman. She had Rheumatoid arthritis. She was young and had tried different treatments. He persuaded her to go and see his family homeopath back in France (in France it is common to have a homeopath treat you as regularly as a General Practitioner). She was prescribed Serocytol and took it for three months with no results. She was further persuaded to take it for another three months and noticed improvements. About 6 months later, she took another 3-month course and she is cured.

Horsing around with Homeopathics...

Horsing around with Homeopathics…

I did some Googling, but was not very successful – you can bet that most of the research is in French, as it is a Swiss drug, and I didn’t Google it up in Français. Anyway, I like to think I am pretty open-minded and whilst the treatment is expensive, it has no known side effects (apart from burning a small hole in your pocket). Meh…I’m willing to give it ago. Also, I wanted to write about the success (or failure) of the Serocytol therapy, you know, just in case it is the cure-all for this nasty little disease!

I started the treatment at the same time as I started my AI diet, so it was lucky enough to be credited for some good results at first. However, when I fell of my AI wagon (with a few bumps appearing shortly after), I knew that it was really my strict diet that had given me respite. Despite all that, I’m not a quitter and where would be the sense in starting a treatment, if I wasn’t to give it its best shot? So, mug or not, I am going to order a second batch.

The Homeopath has already tried me on about 8 other different homeopathic remedies and this time, he has prescribed another three on top of the Serocytols. He’s a persistent man and I thank him for that, because if I were a homeopath faced with a disease as complicated and diverse as Hidradenitis Suppurativa, I would have just thrown in the towel!

I am reimbursed by the French state for all homeopathic treatments (apart from the Serocytols), including most of the consultation fee, which is only 36 euro anyway. So, it’s off to the pharmacy I go today (for my freebie homeopathic granules and probiotics). Serocytol will have to wait until next payday, but fortunately HS is very patient and I know it’ll stick around until then. 🙂

 

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Antibiotics. Day 4. Denial.

Humph. I’m only four days in and I am definitely experiencing two of the ‘indesirable’ (the French word) effects. My tummy is not its usual happy self and I no longer have to work out what they mean when they describe the type of bowel movements the tablets can induce! Secondly, my tummy is in a permanent bloated state. Not in a painful way, but in an aesthetically displeasing way. In other words, yes, I look pregnant. Rubbish.

Did Grok drink Kombucha to wash down his antibiotics...?

Did Grok drink Kombucha to wash down his antibiotics…?

So, I am sipping my Kombucha (is it Paleo – who knows?) and wondering what path of probiotic action I should take next to settle my tummy gripes. The evidence seems to point more towards the fermented dairy, so I may go back to the organic shop and pick up something fermented. I believe they had sheep, goat or cows’ milk fermented into various types of yoghurt and kefir. By far the cheapest product I saw at around 1.50 euro was the cows’ milk kefir, but I guess in this case, it’s more about quantity. If I buy the yoghurt, how much should I have? Is this going to mess with the autoimmune protocol, as it’s dairy? Will it even stop my poorly tum tum?

I’m still feeling a little flat. A bit impatient and a bit bleurgh…like nothing is interesting or satisfying. The whole using antibiotics process is still a change I have to get used to, I suppose. Plus, I’m back at the beginning of slaying my sugar dragon, so that doesn’t help (should I stop drinking Kombucha??)

What of my HS? Well, it is surely too early to say, but….I’m not in as much pain and I’m not leaking as much. This could be down to clean eating though, which I have moved back to since the holidays have ended. I’m sure my body didn’t notice that I had two small slices of raw milk Tommes cheese yesterday and I’m still holding out for the proof against raw milk cheese as a probiotic. Apart from the cheese, I’m definitely eating clean. Apart from the coffee – which is a drink, so is not categorised under clean-eating anyway. Ok, so I’m not 100% back on board with the food thing yet, but I’ve always found that with me it evolves organically before complete abstinence is achieved.

Only 66 more days of denial to go.

Zero pressure = increased motivation.

Hangover. Day 3.

Wow. This is not good. How did I used to suffer this pain all the time? I am 3 days into recovery from my ‘binge’ on Saturday and my HS is horrible! I have new spots, pain and all over discomfort. It hurts to sit down again – well, it always hurts a little to sit down, but right now? Horrible! I am taking paracetamol again – just one in the morning and one at night to help me sleep. I am having to completely strap all my wounds up, to stop the pain that I am getting from the chaffing. there are so many unmentionable side effects from a flare, I am just going to stop right now!

Monday was a complete right off. Now that was due to the wine hangover. When did it get so hard to overcome a night of drinking? I guess I didn’t feel so bad Sunday, because I was still buzzing a little from the lovely evening we’d had the night before, but Monday was a different story. I was tired, in pain and just one thing after another went wrong – I even locked myself out and had to break in by climbing through the neighbours’ gardens – not an easy feat when you are suffering a big HS flare!

The good news is I’m coming out of it though and I know it will get better than this. Before, a flare like this would have really gotten me down, as I would have had no clue as to how to reduce the pain again.   I wouldn’t say I feel completely in control, but at least I know that by staying on the right food path, the inflammation will slowly subside. Even though I am moaning now, I know that the reality is that this pain could be 100% worse right now. My ‘golf ball’ has not swollen back up to a golf ball since I started the AI diet. All the HS spots I have right now have done a complete cycle over the last three days and at the risk of sounding icky (which we always do with this disease!), all are leaking nicely!

So it’s been a tough couple of days, but I am still feeling positive. The worst thing I can do is start thinking about what I haven’t/can’t do when I’m in pain. This morning I put zero pressure on myself to achieve anything and it worked; no expectations for me =  increased motivation. In the end, I managed to bake bread for the rest of the family (which always makes you feel like you’ve achieved something doesn’t it?) and ended up doing a lot of washing and housework – success!

As far as the diet goes, I am pretty keen to start reintroducing foods in a controlled way soon. I hope I don’t trip myself up again and manage to stay on the right path!

Slay that sugar dragon!

I am way into my diet now and I am now noticing that apart from being the skinniest I’ve been since I was 8 years old, I am not craving bread or cakes. I think I may have finally slain the sugar dragon – wooohooo!

Big Momma before…
..Skinny Momma after!
It has been a tough 6 weeks, but I feel I am settling in to it now. It is surreal that I have come this far and not quit. I remember the first time I read It Starts With Food, I remember thinking that there would always be a limit to what I would be able to cut out of my diet and I certainly wouldn’t be able to cut out all that food and eggs – what would I eat for breakfast??

The truth is, when you are desperate, you can pretty much achieve anything.

I had really got to the point where I was ready to even give the antibiotics a go. I was in constant pain and was still just using the gauze and Micropore to strap my sores up. Painkillers were ruining my stomach and after a few days of painkillers, I was getting awful headaches.

I knew then that I just didn’t want to be intoxicating myself even more with antibiotics. I had been eating semi-paleo since June. I got back on the internet and found Primal Girl‘s blog again. I re-read it and decided, enough was enough –  I was going to do it!

And here I am. Eating a beautiful variety of nature’s beautiful foods. Again, I’d love to say it was easy, but it is not. Who wants to cook two-three times a day, everyday? Who doesn’t want to be able to throw in a ready-meal, or a pizza at the end of a hectic week? I certainly struggle at those times. But let me say this. My family and I are eating a bigger and better variety of fruit and vegetables than ever before. We have cut down on our meat consumption and we substitute junk food nights with oven baked sweet potatoes, eaten covered in pink Himalayan salt and eaten with our fingers from a bowl whilst watching TV. We have learnt to appreciate that all the food we are eating is nourishing us and the effort we put in has a reward. Good health. For all of us.

So on the mornings where I struggle to decide what to eat and force myself to cook up those leftover courgettes and onions, I am comforted by the thought that I have achieved more than I ever believed was possible! The inflammation in my backside has subsided so much. I still have the spots and they are still leaking – I have even had a couple of new ones. But it’s all healing so much quicker. I haven’t had any painkillers for at least two weeks. Will I go into remission? Who knows? But something is working and I am more motivated than ever to carry on eating this way.

Arrogance, antibiotics and dressings.

This post is all about HS, so if you are squeamish, have no interest in blood and pus and other disgusting aspects of this disease, please feel free to move on!

I am sick of not getting anywhere with this. Whenever I have a few days like this I find the best way is to try to find something that gives me some hope that I can live a little more comfortably with this condition. So, I decided to email some dressing companies based on a wound care sheet I found. Convatec were very polite, but said they could not send me any dressings direct as samples are only sent to dermatologists/organisations etc. The nice lady from Convatec was very sweet and sent me a link to the Hidradenitis Suppurativa Trust website and urged me to go and see a dermatologist here. I’d very much like to, but my last experience of seeing a dermatologist in Bordeaux didn’t go so well.

We went to a hospital in Bordeaux. After waiting for nearly 2 hours, we finally met the derm. He brought in a whole load of students to examine my backside, spoke only in French, addressing Mr B most of the time. He spoke English to me at the very end, so obviously he could have explained the tricky bits in English, but chose not to. When I tried in earnest (in French) to explain how I had changed my diet and tried to change my whole lifestyle to combat this disease from inside, he hardly acknowledged it. Instead he wote me a prescription for a 10 week course of antibiotics and said, “If you were dying you would take it, but it’s up to you.” Oh, the arrogance!

Anyway, I am back to finding my own path for the time being. 3M called me back and said they would get their resident doctor to call me about types of dressings, but I never heard back. I decided to ask my homeopath for a prescription of Duoderm Extra Thin, but as usual when I think everything is going well the language barrier prevails and I got a prescription for Duoderm E Border (I believe it is Granuflex in the UK) instead.

I tried it the next day, carefully cutting it out and placing it directly on the sensitive spots that were leaking. It was weird, awkward and a bit cumbersome. The patches were quite thick and they were sticky, which meant my butt cheeks kept sticking together during the day! By the end of the day, I had had enough and tried to take them off. Well, it says just hold the skin and gently peel back…right…that’s not quite how it happened with me! I tried pulling and it was so stuck to my skin, I was in agony. Ed came to help me and at this point one side opened and pus dripped all over the floor. I started laughing at the absurdity of the position I was in, not really knowing what to do next. I stood in the shower and we carried on laughing as I peeled the layer of hydrocolloid off my broken skin, with intermittent yelps of pain between the laughs.

It hadn’t worked out as well as I’d hoped. it had been semi-waterproof, but  had definitely cut the strips too big. I realised too, that my skin was so sensitive, I would need to put the Mepilex on under it, to prevent it sticking to my skin. It was a little disappointing, but for a first go at finding a longer term solution, it wasn’t all that bad. It’s hard to know what you are supposed to be doing with all of this new technology, even if it is just a glorified plaster.

One down, many more dressings to go! Allez!