Week Two Summary

I've been taking very small amounts of fly agaric tincture to treat my Lyme disease for two weeks now. For this update I'm going to list my individual symptoms and explain how the mushroom has affected each one.

1. Exhaustion/Chronic Fatigue - Before I started taking the mushroom, it was extremely difficult to do anything but lie around without the slightest energy to do anything. It would take the hugest effort of will to do the slightest thing.

   This changed within half an hour of taking the mushroom for the first time, and has improved ever since. I've been so lively the last two weeks, and am up and doing something almost before I've thought about it. This turnaround seems to me, and those that know me, nothing short of miraculous.

2. Cognition - Before starting on the mushroom, my cognition had deteriorated to such a degree that I couldn't get my head round anything. If I had to do something, or think about something, that required more than one step, I couldn't do it. I couldn't string my thoughts together to write anything. I couldn't compare or summarise anything. My IQ must have dropped a huge number of points.

   Since taking the mushroom, this is the other major area that has seemed miraculous. The difference is huge, and my cognition is still improving. I've been able to pick up my work developing mobile phone apps, which I'd had to give up several months ago because my brain simply wasn't working. I can keep up with conversations again. I'm able to formulate my thoughts enough to write this blog.

3. Memory - Prior to the mushrooms, my memory was shot. This is related to cognition, above, and together they make up the majority of the "dementia-like symptoms" that you get with Lyme disease.

   It seems that some medication aimed at treating dementia uses the same mechanism as the fly agaric tincture, for example:

   Piracetam improves the function of the neurotransmitter acetylcholine via muscarinic cholinergic (ACh) receptors which are implicated in memory processes
   (from Wikipedia)

   Needless to say, my memory is greatly improved now. I no longer have to carry a list round with me detailing anything that I'd need to do that day (assuming I'd remember to write it down in the first place, not lose the list, or forget the list even existed). I'm almost able to take my memory for granted again.

4. Loss of Control - The other main "dementia-like" symptom is very creepy, and involves seemingly losing autonomic control over your actions, and doing and saying things you really didn't intend to.

   I haven't lost control and done or said anything inappropriate since I started on the mushrooms. This was the main reason I had stopped socialising (as well as the chronic fatigue), as I was terrified I would say something that offended someone, and this did happen a couple of times. It's such a relief to be free of this.


5. Stamina - Prior to the mushroom, I could do little chores like housework for five or ten minutes at a time, then would need to rest for at least five or ten minutes. My muscle and tendon trouble would mean that I couldn't be on my feet for very long anyway.

   Yesterday I walked for around five miles, with barely a rest. This is far and away the furthest I've walked in four and a half years, since my life fell apart with what turned out to be Lyme disease. I was tired afterwards, but managed to watch a football match on TV and then cook and eat a roast pork dinner before dropping off for an hour's nap.

   It's probable that fly agaric is the Viking berserker mushroom that would give them such amazing stamina, so it's not surprising that it does improve stamina. I'm really getting a full day every day now.

6. Pain - An old injury in my neck, back and shoulder had caused me to need pain relief every day. This injury seems to have been colonised by the borrelia bacteria, as they can use your own collagen to build citadels for themselves in areas that are low in movement or oxygen. This is why with Lyme disease it's so important to keep moving and stretching your muscles, even if you're just lying there.

   Although I do still have low levels of pain and discomfort, I no longer require any pain relief at all.

7. Muscle ache - When exerting my muscles in any way, such as climbing the stairs, they would ache quite terribly. I still get this to some degree, but it is improved and improving.
8. Tendinitis - It was tendinitis in my ankles that started this health nightmare that eventually turned out to be Lyme disease. After two years of only being able to walk a few steps, this did improve with deep tissue massage, but was still a great limiter in what I've been able to do. The tendinitis would flare up, mostly in my ankles and knees, just about every month, when the bacteria have their monthly bloom. A bad flare would take weeks to get better. I had tendinitis in my ankles all summer this year, and could barely do anything.

   With all the extra exercise I've been getting since starting on the mushroom, I had a flare of tendinitis at the back of my knees last week. I expected it to last a few weeks as usual, but it was gone within a few days on the mushrooms.


9. Hypocapnia/Hypocapnoea (low carbon dioxide, causing nausea, dizziness, seizure, muscle spasm) - I'm not sure whether the mushroom is just improving the symptoms of this, or whether it's addressing my low carbon dioxide levels. I haven't had as much dizziness and muscle spasm, I've had no nausea, and it's much more rarely that I realise I'm not breathing.
10. Cold - My body does seem able to regulate its heat better. I'm sure the increase in activity must help with this. My temperature has been 35-36C before the mushrooms, but often at 37C since.
11. Insomnia - I haven't had any episodes of insomnia over the last week, though I did have a couple the week before.
12. Tinnitus - The tinnitus was very variable before starting on the mushrooms, so it's hard to say whether this has been affected. It hasn't been bad over the last week though.
13. Tourettes-like moments - When I remember something embarrassing I've said or done, a strange uncontrollable noise will erupt from me. I understand this is also related to Lyme disease. I've only had it over the last few years, during which the Lyme wrecked my life. I haven't had this as much over the last couple of weeks, but it does still occur every few days or so.
14. Stress and worry - My levels of stress and worry have gone way down since starting the fly agaric. I'm sure this must have a positive effect of many of my other symptoms as well. I honestly can't think of a time in my life when I've felt happier and less worried. The simple joy of being alive, and the beauty and draw of nature, are making my life a living paradise.

15. Antibiotic Effect? - I have had something on the sole of my left foot for probably two years now. I've been told variously that it's verrucas and athlete's foot, and treated it accordingly, but it's made no difference. Rubbing raw garlic into it would get rid of it briefly, but it always came back. My LLMD (Lyme Literate Medical Doctor) said that she thought it was bacterial. Since I started on the fly agaric a couple of weeks ago, the infection has almost gone.
16. Sensitivity to Light - I still have great sensitivity to light, especially when unexpectedly reflected.

I've tried to be as objective in this write-up as possible. I should add, this isn't the first treatment I've tried that I thought would work, so it can't be explained by a placebo effect. I really think I've stumbled onto something of immense value here, something that was once known but has been forgotten, except in some remote areas of Siberia.

I'm only two weeks into this experiment, so it's possible of course that difficulties may yet arise, but after two weeks, small pieces of fly agaric are having a seemingly miraculous effect on almost all my symptoms.

Photos on this post are from sxc.hu, a free photo site (except for the foot rot).

Ten Things I Learned This Week

Everything's still going well, ten days into the treatment of Lyme disease with very small amounts of fly agaric. I'm still eating bits that have been cooked and frozen, as the tincture isn't ready yet.

1. 
   Image (right) from top: coniferous, deciduous and coppiced woodland. Some woodland is a mix of these types, in which case there will be a combination of symbols.

   The easiest way to find woodland to search for fly agaric is to look at a local Ordnance Survey map.

   Although the fly agaric mycelium can be hosted by pine and fir, these forests, in Britain at least, are more likely to have been relatively recently planted for timber, and unlikely to harbour any Amanita muscaria.

   Coppiced woodland is likely to be hazel, willow, sweet chestnut, hornbeam or alder, none of which host the symbiont, so are probably not worth hunting in.

   Deciduous woodland is your best bet.

2. I've stopped wrapping the individual mushrooms in newspaper, as it was sticking to the tops of the caps. A basket or cloth bag is a better bet.
3. The stalks are likely to contain maggots. I left the stalks on the mushrooms I was air drying, which resulted in more than a hundred tiny maggots wriggling around on the coffee table. Luckily I removed them before my boyfriend spotted them! From now on I'll either leave the stalks in the ground or use them to spawn with.
4. When spawning I've found that if you dig (just with a small stick) around the base of a host tree (birch, oak, pine, fir), ready-made fissures can appear. The idea is to get the spore on the roots, so I've started making use of these fissures. I've also put pieces of mushroom into animal burrows that lead under a potential host tree.
5. 
   The best way to remove bits of dirt from the mushroom cap is with a mush brush, a special soft brush for cleaning mushrooms without damaging their skins.

   I've ordered one but it hasn't come yet. I'll review it when it does. I'm hoping that it will work on damp mushrooms as well as dry ones.

6. Drying the mushrooms can cause an allergic reaction. I was pulling the stalks off the mushrooms I've been air drying, and my nose started running. My nasal membranes were sore for quite a while. I don't think I'm going to air dry again.
7. An alternative to air drying is to use a food dehydrator. If I weren't able to take the tincture - if I had an allergy to alcohol for example - I might consider this route.
8. I started on a new mushroom from the freezer this week. I took a piece the same size that I had from the previous mushroom, but became very clumsy. I think that the new mushroom has more active ingredient. I've been taking smaller pieces since, and everything has been fine again.
9. All things considered, I think I will clean, chop and tincturise the mushrooms right away from now on. As well as avoiding drying allergy, it will also make the strength easier to determine, by averaging out the strength of all the mushrooms in the vodka.
10. It's best to shake the jar with the mushrooms in before adding the vodka. This helps them settle, and you can fit more mushrooms in the jar.

First Week Summary

It's now a week since I started taking very small pieces of fly agaric mushroom for my Lyme disease. I have to say, it's proving successful beyond my wildest dreams. I spoke with my LLMD (Lyme Literate Medical Doctor) at the weekend, and she expressed great interest and explained to me how it's working. And it is undoubtedly working.

The fly agaric won't actually kill any borrelia bacteria. You'll still need something else for that. But what it is doing is alleviating the symptoms that make this disease so horrible. For me, this is mostly chronic fatigue and dementia symptoms.

Up until last week, my days largely consisted of lying around feeling like death, too mentally confused to do pretty much anything. I'd stopped going out and seeing people, because I couldn't keep up with conversations, and I would sometimes say things that offended people, without realising what I was doing. Plus I had absolutely no energy.

Since starting the fly agaric experiment, it's been like breaking an enchantment. I've been describing it as a miracle, and that's exactly how it feels. Within half an hour of taking the first piece I could feel the difference.

I've been incredibly active every day. My cognition is so improved. There's no way I would have been able to string my thoughts together in a blog like this before. Friends and family have mentioned how much better I am, and that I have a sparkle back in my eyes. I really feel like myself again. I haven't been able to work for four years (I was a computing lecturer), but I feel now that I could certainly do something, and I don't feel hugely far off lecturing again, once I get my stamina and full mental ability back.

Fly agaric is still used in this way - ingesting small daily pieces to treat psycho-physical fatigue and more - in remote areas of Siberia. I haven't found anything new, just something that has been forgotten by our culture. Not a cure, but a treatment for chronic fatigue, dementia and more (possibly Parkinsons, schizophrenia and more). It's also great as a painkiller, and I no longer use my previous method of pain control. The mushroom is enough.

Here's a bit of science, but I don't pretend to understand it, so if I've made an error - or if you can explain it better - please let me know via email or comments. It seems that neurotoxins (from the bacteria dying off) clog up the muscarinic receptors (which are acetylcholine receptors), and messages contained in neurotransmitters can't get across. A chemical in the fly agaric mushroom forces these messages across, and hey presto, suddenly you can move and think again.

Of course, just because this treatment is working for me doesn't mean it will work for everyone. Lyme disease can present very differently in different people. And there are dangers involved, either through picking the wrong mushroom or taking too much.

Once my tincture is ready, in another week or two, I'll be moving onto that, but until then I'll continue harvesting (the season end is drawing near) and eating a little cooked and frozen mushroom every day. Someone very dear to me has early stage dementia, and I intend trying to get them to take it. And a good friend has bad back pain, and I'll try her with the tincture drops once they're ready. For back pain, apparently you can just put a few drops on the site of pain - no need to ingest it - so it'll be interesting to see what happens there.

The images on this post are from sxc.hu, a free photo site.

Drying the mushrooms

The mushrooms I was attempting to air dry weren't really getting any drier. I picked them before realising that the gills would need a good air flow around them, and I didn't leave a stalk. Thinking about it now, I could have perched the cap on a stick to dry, but I didn't think of that at the time. We had a good fire burning, and I thought I'd give heat drying a try.

I'd read that the gills go temporarily mushy when heated, and they should be placed top up to catch and dry any goo. I put them in the ashes under the fire overnight, and they were lovely and crispy this morning. I've put them in an air-tight container and will pop a bag of desiccant in there if I can find one.

Harvesting continued today. I don't know whether the unseasonably warm weather is extending the fruiting season, but don't want to run out of these miracle working mushrooms before the next season comes around, not until the end of next summer.

I cut today's crop with their stems on, to have another go at air drying. If they're still not drying successfully, I'll fire dry them or freeze them. Stuck into holes in egg boxes, they make a little enchanted tabletop forest.

Gathering the mushrooms and making the tincture

Amanita muscaria is found mostly in woods, from late summer to late autumn. Mostly around birch trees, they can also be found around oak and pine. They stand out a mile, bright red, usually with white spots, unless they've been washed off by the rain.

There are real dangers if you take the wrong mushroom, so if you're not 100% sure, don't do it. Your life or liver might depend on it.

These photos are of some mushrooms I found on the common yesterday.

I've just been taking the mature ones (when they've flattened out), and returning for the immature ones a few days later, by which time they've matured. There's a frill halfway up the stem. Cut them off there, then you can air dry them without crushing the gills.

To say thankyou I propagate the spore to create new colonies:

• Put caps or bits of caps that aren't good enough for medicinal purposes (if they've started to go off) into a container.
• Add water and mix or shake well.
• Pour over the roots of a birch, oak or pine tree that doesn't already have a colony.

Wrap your harvest individually in cloth. Newspaper will do, but bits of paper will probably get stuck on the mushroom.

I'm still experimenting with what to do next, but here's what I'm currently doing.

• Air dry the mushrooms for a couple of days, preferably somewhere sunny, warm and drafty.
• Clean any dirt off the mushroom once it has dried. Don't wash the mushroom. Clean the dirt off with a soft brush or your fingers. It doesn't matter if some bits are left.
• Cut into pieces around a centimetre or half-inch square.
• Put into a jar and cover with spirit that is 32-40% proof. Stop pouring when the mushrooms start to float. Within a little while the mushroom pieces will start to shrink and the spirit will take on a pink or red hue.
• Put in a warm and sunny spot for 2-3 weeks.
• Strain the liquid off. Don't force anything through the muslin or whatever.

Day 1 to 3

I've got chronic Lyme disease, caught from a tick bite many years ago, and it's almost impossible to get diagnosis and treatment here in the UK (and in many other countries). So people with Lyme disease either have to find a doctor who understands and can treat it (pretty much always private and also very rare and expensive), or try to treat it themselves. I've started this blog to document a treatment I'm trying: fly agaric tincture.

Chronic Lyme disease can hit your nervous system and brain really hard. It's estimated that you lose 30-50 IQ points while chronically infected (sorry, I'll try to include some links to relevant research at some point). It makes any sort of rational thought pretty much impossible. So bear with me - there's a good chance this narrative will jump all over the place.

With most treatments for Lyme disease, it's really difficult to tell whether it's working or not. Generally, if a treatment regime is having the desired effect and killing off some of the bacteria, you'll actually feel worse. This is believed to be because the bacteria as they die give off neurotoxins, which knock you for six. When a whole load of bacteria die off at once, it can produce a Herxheimer effect, first noted in syphilitic patients. This is an acute increase in symptoms, and usually lasts a few days. My first one involved nausea and an extreme thirst.

Taking the fly agaric is a completely different experience. I hasten to add, I'm just taking the fly agaric in tiny doses, nowhere near enough to get high, hallucinate or trip out. This treatment isn't about that. It's just about finding something that can either fight the bacteria, restore some quality of life, or even both.

There are many caveats with fly agaric (Amanita muscaria). In very large doses it can kill. In smaller doses it can alter your perceptions and cause you to hallucinate. In tiny doses there seems to be much less risk, but this cannot be described as a risk free treatment. I'm not suggesting anyone try this themselves. I just want to record my own experiences. Also, the amount of active chemicals in the mushrooms can vary massively, depending on the time of year, method of preparation and other unknown factors. Even two mushrooms growing side by side at the same time, prepared the same way, can result in very different levels of active chemical. This makes dosing very difficult. It seems best to start with very little.

I don't think it's possible to buy fly agaric tincture anywhere, so I realised I would need to make my own. Despite a couple of years of being completely crippled with chronic Lyme, I'm now able to walk around a bit most of the time, and was able to find four fly agaric growing wild (I'll expand on identification and collection in another post). Finding little information on the web, I decided to try several different methods of preparation and preservation.

I didn't want to wait 2-3 weeks for a tincture to be ready, so determined to chop, fry and freeze the first mushroom. I chopped another and preserved it in vinegar. I chopped another and covered it in vodka (32%-40%) to make a tincture. The last one I set air drying, intending to eventually crumble it into tea. I'll go into the actual methods in more detail in another post, and link to the articles that gave me the ideas.

The initial dose was a seventh of a cap, eaten with breakfast. Within half an hour I began to feel more alert and aware. I spend most of my time lying around feeling like death, but within an hour I was up and about and feeling very lively. I cycled into town and did some chores. There was no "coming up" rush, no hallucinations or change in perceptions beyond feeling lively and really up for it. It was the best day I've had in an awfully long time. Probably years. At no point did I feel any stomach cramps or nausea, possibly because of the small dose, possibly because the mushroom had been cooked.

The liveliness wore off in the late afternoon, and I did get pretty tired. I was back out for more fresh air and exercise though. Actually I went out looking for more mushrooms! This is the first treatment I'd tried that undoubtedly makes you feel better.

I mentioned this experiment on the Lyme disease forum I frequent. Within an hour of taking the first bit of mushroom, I felt I might be onto something, and wanted to let someone know, in case I was run over by a bus or something. To my astonishment, someone on the forum had ten days earlier been given a bottle of fly agaric tincture by a top herbalist, to treat the "head fog" or mental confusion that goes along with chronic Lyme. He was told to put a couple of drops under his tongue every half hour until his head felt clear. I've since found out that you can get fly agaric tincture on prescription in Germany.

I was certainly very tired that evening. I'd done a lot more physically than I normally would in a day. I slept very well that night.

Day 2 I took half the amount of fried and frozen and refried mushroom at breakfast, taking the other half of a seventh of a cap later in the afternoon. This was to try and even out the energy levels throughout the day. Again, I found I had energy and mental clarity way beyond what I've become accustomed to. The best way to describe it is that it is as if an enchantment has been lifted. The chronic fatigue aspect of Lyme seems to disappear. Last week it was a huge effort to just try and think around a simple chore, let alone do it. This week, the chores are simply done, in less time than it would normally take to try and get your head round what needs doing. It's starting to feel quite miraculous. Needless to say, I was out hunting for more mushrooms again.

I'm still not letting myself get too over-excited though. In the summer I took a month long course of Korean ginseng, to try to get some energy. The first couple of days I felt all right, but then was much worse for the rest of the summer, without a single "good day". I've since found out that ginseng can feed the energy of the bacteria and actually make you feel worse. I'm hoping that the same thing isn't true of fly agaric.

I had trouble getting off to sleep that night, and thought that perhaps I had taken too large a dose in the afternoon. It's already becoming clear that multiple tiny doses, such as tincture drops, would be a much better way of administering the fly agaric, and managing the levels you're taking.

Day 3 I took a similar amount to Day 2, but missed out the afternoon dose. I think even my small doses are possibly too large. Energy levels and mental clarity continued to be astonishing. My long-suffering boyfriend is amazed at the change in me. He even got breakfast in bed this morning.

Again I was out mushroom hunting. It's getting near the end of the season, so it makes sense to collect them now. In exchange for taking the mature mushrooms, I plant some fly agaric spore, which is found in the gills of the mature mushroom. I'll go into more detail in another post at some point.

I missed the afternoon dose but still had trouble getting to sleep. I should add, insomnia is one of the symptoms of chronic Lyme, and comes and goes. It could be unrelated to the fly agaric experiment.

I've given up the other methods of storing the mushrooms (pickling, drying and freezing). With the pickled mushroom, all the red colour was leaching into the vinegar, and I was concerned that the active chemicals might end up in the vinegar. I've also decided to dry the mushrooms for a few days before making the tincture. From my experiments so far, this should ensure a deeper red hue in the tincture. Since it was the colour that drew me to the fly agaric in the first place, this seems important.

EDIT It seems it wasn't the drying that made the colour brighter. There was an immature mushroom in one batch (it had been kicked over so I bagged it up) and the colour is much brighter before they reach maturity. I guess the tincture will end up pink, but pink is good too :).