BBC article: new test for Lyme

Here's an article by the BBC about a new, possibly more accurate test, for Lyme:

Seeking to solve the Lyme disease puzzle

Hope it works, but wow, more tick trauma!

Teasel Tea treatment for Lyme (try saying that five times fast)

Lately I've been dreaming that the zombies are coming to get me. I figure it's my subconscious giving me a final warning to do something about how I've been feeling lately before things get bad again.

November I had to go in the mall to buy something specific. While there, I had a very bad reaction to perfumes and ended up so confused I couldn't find my way out of the shop, level on the mall. It was very, very scary, but I'm finally recovering.

I think it weakened my body and allowed the bugs inside me to wake up and start playing with my immune system.

So, I picked up some more teasel from the herb shop today, enough to last at least 6 months of treatment, but they upped the price to over $30. I think I might start growing my own at that price.

Keeping in mind that Lyme effects everyone different and each person reaction to 'cures' vary, I'm going to tell you about my experiences with Teasel.

The book Healing Lyme naturally by Storl was my main source of information. A very interesting book, however, not one I would recommend to everyone. You need to have some degree of common sense while reading this book. Treating your own broken leg is all well and good IF the break is simple AND you have medical experience. So basically, someone with a Lyme brain should not be given access to this book except on clear days - person experience and opinion. Have someone you trust and who is open to new ideas read it for you and let them mine out the good parts.

I feel that after I got over the first little bit of my Lyme treatment, both traditional and nateralpathic remedies were doing very little good to my body and a great deal of harm to my pocketbook. Those methods were necessary to save my life and help me find the road to good health, but they reached a point when they did all they could.

So I focused on the things I could do for my health. Follow a strict diet and avoid all things that made my symptoms worse and tried teasel.

The teasel treatment that worked for me:

• drank teasel tea three times a day
• drank lots of liquid
• exercised
• hot baths every day

To make the tea, I boiled a bit of teasel root in some water for about 3 minutes, strained it and drank it.

Exercise - the book said that it's an important part of the cure that you sweat out the nasty bugs from your system. To exercise, I started by doing an activity that made me sweat (a light walk around the yard). Then I built up so that I could manage something for five minutes, then ten, now I'm up to almost an hour.

What exercise you do isn't so important (my opinion) it's just important to get your heart going and your skin sweating (books opinion). The more you can do, the better, but it's important to build up slowly.

The hot bath every day is also very useful for expelling the lyme from the body. It gets your blood flowing and allows the blood vessels to relax. But again, be careful with yourself and work within your limits, slowly expanding them.

These four steps are what worked for me. After about a month following this treatment, I showed notable improvement. I took the treatment for a year and then I felt that I was doing al right. They tell me I'll never be completely healed, but I'm doing far better now than even my Seattle doctor said I could be. The bugs went into hiding, or whatever they do, so I just have to be careful not to wake them up.

I'm still sensitive to foods and especially to VOCs, but I now have enough energy to get up at 6am and stay awake until 10pm, with no naps and can manage moderate activity. There are also still big gaps in my memory and difficulty forming new memories, especially regarding people. Ability to understand non-verbal cues is just about nil.

My benefits from teasel:

• moderate improvement of cognitive functions
• improvement of energy
• less sensitivity to foods
• less falling over all the time

Oh, and one more thing, the first four months I was taking teasel, I stunk of garlic without actually eating any. I'm told it has something to do with toxic cleanse, but I don't know.

Multiple Chemical Sensitivity

A really interesting report by the Canadian Human Rights Commission about Multiple Chemical Sensitivity and other Environmental Sensitivities. It's long, but really interesting. I'm just posting it here because I suspect I'll want the link later on.

an idea

Knitting, spinning, weaving and crafting in general has done so much good for me over the years. Especially since I became really ill, it has provided me with nourishment that no medicine or food ever could.

Being a member of the yarn related community, both local and online, provided me a link to steadfast friends and wonderful support.

Yarn encourages me to accomplish something in my day. I'm not just wasting time waiting to get better, I am making socks, or a skirt, or something else. I create something tangible - and I know that's nothing to most of you who can do that any day, but to me, that's a huge accomplishment! It means the world to me to be able to pull on a warm sweater that I knit myself, or to adorn myself with vibrant socks that I not only knit myself, but I spun the yarn. It fills me with a sense of love and self worth that otherwise leeches out of someone with a long lasting illness.

But it's more than that.

When I am so ill, I'm nothing but a useless waste of space, I can still create something. I can knit a few stitches, or pull myself out of bed to lay on the couch and spin yarn. Even if my arthritis is so bad that I can only manage sparse five knitted stitches, it is still a contribution. It's marks the difference between being a worthless waste of skin to being human.

I wish I could explain it better.

Lately I've been spinning some yarns for sale. I want to make a bit of money so I can afford Christmas. One particular yarn, is rather challenging. It is involves making two yarns at once and plying them together simultaneously. I feel like an overtaxed octopus trying to do all this at once, but the results are gorgeous. And, it gave me an idea.

Now, this is just an idea at the moment. As I said yesterday, I'm not an organizer of big things. I realize that of myself. Give me grunt work, and a task I can do in the background, and I'm happy!

The idea:

It began by thinking that making yarn and other crafts to sell is one of the few things I can do to make my own income. I don't make very much - just enough to buy more supplies for my hobbies - but even that little bit says to me that I can one day become a functioning member of society again.

This got me thinking about how much better things will be when Lyme is understood. When the political controversy no longer governs treatment and an accurate diagnosis method is available. Organizations like CanLyme are working towards this, and wouldn't it be great if I could donate money to help them help people like me?

So I imagined myself spinning a special series of yarns, all different kinds and colours, all with at least a fleck of Lime Green in them to symbolize Lyme. And I take this yarn and put a little write up about Lyme in Canada and how lack of research is causing harm...stuff like that. I sell the yarn, and take a good percent of the profits and give to CanLyme (or the like) and a percent to pay for my health care. (note: most Lyme patients in Canada have to pay for their own medical expenses!)

That could be a nifty idea and a great project for 2011. It would help raise Lyme awareness, help support my health care costs, help raise money for charity, and most importantly, make me feel like I'm doing something to both help my state in the world and help the greater cause.

I think I might do this. I know I can usually get fleeces for free, and I don't mind washing and preparing the fibre for spinning. Dyeing the fibre might be an expense and it's beyond my skill set, but perhaps someone might volunteer their time and facilities? If I want a long wool like Cotswold, Romney or a Leicester, I might have to pay for that. But all in all, it's a low cost investment as all it would take is my time (something I have plenty of) and my energy (a resource that waxes and wanes) .

The more I think about it, the more I feel it's a good idea.

But, what if...

What if it went a step further?

What if several people with Lyme did something similar, all organized under one umbrella? Not just spinning, but knitting and weaving as well? Then we did as above? Sell the yarn, give a percent to a Lyme related charity and a percent towards our own treatment. Could this work? Could, given our illness, we do this? Would a project like this not only raise awareness of Lyme in Canada but also give those victims this this vicious pathogen a sense of purpose and a way to feel empowered?

It's not just the people with the illness who feel hopeless, their family, firends and support network also need a way to help. This might be the kind of thing.

I see problems with this greater idea: One thing that comes to mind is that I'm not a leader of men, woman or children. If we did this, I would need someone to take the lead, but I would still want to be consulted in it's organization and implementation. Not to mention, the leader of this movement would have to have a non-Lyme brain. There are other problems I see already, mostly where money is concerned. And who would do the write up about Lyme awareness and the project? How would it be presented to the public? Free knitting, weaving and spinning lessons would be needed for those who do not yet know how to do these things. Plus equipment: spinning and knitting are affordable, but weaving certainly isn't.

There is a lot to think about.

Thoughts anyone?

Seeking

Seeking someone in the Victoria area who has had Lyme, has Lyme but with moderate to mild symptoms, or has someone in their life with Lyme, to work on a project that will increase Lyme awareness across Canada, and help raise funding for Lyme research and treatment. Must have experience organizing people and events. Good communications skills is required.

I have an idea. It's just an idea at the moment, but I think it could be worked to raise awareness of Lyme, to help Lyme patients have a feeling of participation in their recovery, and to raise money that would go to an organization like Can Lyme and hopefully towards the participants as well. It would be a year long project starting New Years 2011.

But, at the moment, it's just an idea.

Organizing things like this is not my strong suit. I'm more of a come up with idea and then do the grunt work kind of gal.

If you would be interested in a project like this, please leave a comment (I moderate all comments that come to this blog before they are published, so if you don't want the comment published just say so).

edited: spelling and clarity.

Soon

I do need to write about Teasel soon. And I will. I am just waiting to see what sort of effects it has over a period of time, rather than jumping in after a week and telling everyone how super this is and possibly regretting it later.

Anyway, if you want to get a jump start on reading: Healing Lyme Naturally is the book I started with.

I'm not thrilled with it, to be totally honest. It makes suggestions that I consider dangerous for someone with no medical grounding. But there is good information there as well.

My recommendation in reading this book is that you don't do it with a Lyme Brain. Don't trust everything you read, but instead, be critical.

In my case, I fully disclosed my actions to my doctors and told them all about taking Teasel. They weren't bothered about it either way, mostly because they don't know much about it. But remember, 'harmless' supplements and herbs can have dangerous drug interactions... and I can find very little research on Teasel in this regard.

CBC on Lyme

CBC video on the real number of Lyme cases in BC

Some things that have helped my Lyme

Lyme affects everyone differently. That's one of the reasons why it's such a bitch of a disease.

There are so many schools of thought on how to treat Lyme, many of which I have tried in one form or another. Most of which, I must admit, made me worse rather than better. But there are a few things I've tried that did offer improvement.

For example, the IV vit. C thing really helped when I was at my lowest point of health. It didn't provide miracle but perhaps that was because I didn't take it often enough or strong enough doses. Then again, maybe it was just the rehydration and extra vitamins it provided to me when I was in a malnourished state.

Long term Antibiotics did a great deal of good for me. They tipped the balance, putting me on the path to better health. They really did save my life. But it got to a point where they weren't helping any more. In fact, eventually the side effects from the drugs were causing more harm than good. It was at that point that we decided to stop them.

It is possible that the Lyme symptoms that remain are simply permanent damaged from having the infection so long (20+years) or even other genetic conditions that have been aggravated by the long term pressure on my immune system. Or, the infection might still be very active. We are currently at the point where we are investigating this.

If I had to choose one thing that had the most influence on my health so far it is lifestyle changes: Specifically my diet and environment.

Before I even knew I had Lyme, I began working on my diet. I knew something was wrong with me and had hoped that it was simply a food sensitivity. Isn't that the natural place to start looking when you have a grumpy immune system and chronic fatigue?

I began by cutting out all dairy (a food I've always been sensitive too), wheat and soy from my diet. It had a small beneficial effect on my health so we dug deeper. There are blood tests you can do (for a few hundred dollars) to judge your immune response to different foods. A naturopath can order this as well as some family doctors. I had high and moderate IGG immune responses to about 14 different everyday foods. So, with great difficulty, I cut these out of my diet as well. Doing this pretty much stabilized my condition. It reduced the load on my immune system which allowed the antibiotics to start working.

My personal opinion on the matter: It is worse than useless to try to cure Lyme with antibiotics unless you modify your diet first. The Lyme infection is just too strong and the body cannot fight it if it is also fighting your food choices.

But then again, that is my personal opinion. Everyone is different and must choose their own path... but maybe...when Lyme is such a horrid illness... why not do everything possible to help your body recover?

It turns out that wheat was not one of my wrong-foods after all. The beneficial effect I had from removing wheat from my diet happened because ....... well, when I buy flour I assumed that I was buying a bag of ground wheat. In fact, I was buying a bag of ground wheat with a whole bunch of additives. It is like how they now put soy in cinnamon for some reason. When buying ingredients, you have to be certain to read the ingredients list. It's very annoying.

Ones environment has a huge effect on the immune system. There are a lot of toxins in the modern world. New clothing is treated with fire retardant and sizing (both highly toxic), as is carpet, the mattress you sleep on, person hygiene products... it's a long list.

What I had success with: got rid of the carpet in the house and replaced it with wood flooring (bought at the local floor auction for less than new carpet would have cost), changed my clothes to all natural fibres, replaced my mattress with a wool one, got rid of all stinky things from the house and replaced all cleaners with ecofriendly ones.

Another factor that made a difference was dirty electricity. I got rid of the electric clock and make certain that just about no electrical devices are on in my room while I sleep. Also, we opted not to get wireless internet in our home and I'm very keen on replacing some of the portable phones with wired ones.

The environment is harder to change than diet, but just as important for relieving stress on the immune system and giving it a chance to fight the infection.

Staying active and motivated to do things everyday was one of the more difficult aspects of recovering. It is also an important step and one I took great efforts to make. It began by making certain I did a little bit of yarn time every day. No matter how much my hands hurt, I spent a few minutes knitting or spinning or doing something that I enjoy. Crafts are good because you're not just doing something, you are making something. It's beneficial for the spirit.

When we got chickens then I had to go out at least twice a day and see to them. It's not a huge thing, but being a place where I had to do something every day, even a small task like feeding and watering a few birds, motivated me to try more things. Even on my worst days, when I couldn't physically accomplish the task on my own, I would still go out and be there while someone else saw to the chickens. That way I'm out of the house at least twice a day and I get so much joy out of watching the birds scratch in the yard.

Biofeedback has also helped with pain management and stress reduction, but I find it difficult to motivate myself to use it. Mostly I just use it when the pain is too great that I cannot sleep.

More recently I've had success with two other treatments.

Microcurrent treatment has been very good for joint pain. Especially because I can no longer tolerate pain pills. I understand that they also have a Lyme protocol.

And finally, I've recently started taking Teasel. So far, this has had a very good effect.

I'm not saying that Teasel is a miracle cure for Lyme and I'm not saying that this is for everyone. In fact, I'm not saying much of anything about it just now. I'll devote a post to it in the next little while where I hope to discuss the effect it has had on me so far, my musings on why it is working so well so quickly, and of course my doubts as to how good this will get.

In conclusion: I'm not all the way better. I'm not even well enough to be a functional member of society. But compared to how I was when I started this blog, there is finally hope that I might recover enough to do something productive with my life.

people - Sartre was right

I know, to some people in my life, it seems that I'm not doing anything to improve my health. But I think they have the wrong end of the stick.

Some of them worry that I don't eat healthy because I'm not 'willing' to eat a piece of cake or to heat up a pre-fab frozen meal. Because I eat a restricted diet that avoids most fresh fruit in favour of cooked fruit, they sometimes think that I am making myself sick. The fact is that I've been over my diet in detail with 2 dietitians, 1 nutritionist, 3 naturoptaths, 2 gastroenterologist , and several nurses - all of whom highly approve of my diet.

Not to mention, I am always trying new foods.

I manage my symptoms first and foremost through my diet, and it works.

It's just annoying that when I spend a night awake and in intense pain because I cheated and ate both tomatoes and potatoes in the same meal, then someone, as an attempt to comfort me(?), tells me that I don't eat enough potatoes and that I really should eat more fresh tomatoes. They say this while they are scoffing down highly processed cookies and then later wonder why their blood sugar numbers were so high.

I tell you, some people have no grasp of cause and effect.

It is assumed that I pick and choose which foods I like to eat and then model my diet around that. Not true!

Foods I love, nay, adore, but cannot eat include: chocolate, garlic, beer, fresh fruit (gives me blisters - cooked is fine), nuts (cannot chew them), take-out pizza, Lipton's Chicken Noodle Soup, peanut butter, sesame seeds, SUSHI, Just about every Japanese food save Tofu, Potato chips, cheese puffs, Gold Fish, Beef... and of course, dark chocolate champaign truffles.

It is very frustrating to be told I'm doing something wrong by someone who doesn't understand what's going on. Why can't I cheat and have a chocolate chip cookie (which is being waved in my face and smells yummy which is so tempting for me)? I explain that the last time I cheated and ate garlic, I ended up in the ER 3 times, and hospital for a week. The person mumbles that one little cookie is not going to hurt me - as if I was trying to insult them by refusing the wrong-food.

You see, this person is a diabetic and has been for some time. Instead of avoiding sweets and processed foods as the doctor advises, they cheat on their diet several times a day and then wonders why their blood sugar fluctuate so much. They could stop eating wrong foods and very likely rid themselves of most of the problem - but instead they are constantly looking for the next magic pill that will cure them while they continue with the behaviour that causes the symptoms (and possibly in their case, the illness).

Speaking about magic pills. This is another annoyance I have with some of the people in my life.

Thank you for taking an interest in my health problems. Even if you didn't believe me when I told you that arthritis is a major symptom of Lyme the dozen or so times I told you over the last few years. You do believe it now because you finally read it in the news paper.

If the newspaper said so, then it must be true - the half dozen health professionals I've seen and the books they told me to read are obviously lacking the necessary credibility. And sure, it really helps that you now tell me four times a day that it hurts because of the Lyme. Something I already suspected, but never really felt confident about because the local rag (that cannot even get the weather report right) had not printed anything about it before.

But what I really wish, is that you wouldn't take it as a personal insult if I don't jump with enthusiasm at the latest magic cure you tell me about.

It is not that I don't appreciate that this is how you try to share in my life, but you could find a better way to do so.

You see, I've already heard of magic pill X. Not only that, I've already taken it at least two years ago.

Buying a far more processed version of the herb/medicine/treatment at three times the price, is not likely to make it work any better. Besides, 'more processed', usually means 'more soy' and since they don't label the ingredients - I can't safely take it.

So yeah, I'm not interested in the 'new' magic cure. It's going to cure me in two weeks, but I've already tried it for several months. They are just trying to take your money and feeding off the empty hole left by the medical profession who fail to take Lyme seriously.

From my point of view, it looks like you don't think I'm doing anything to help my health. Which is very annoying coming from people who complain about things that they are more than able to fix, but too lazy to do so. It's like these people need to have something to complain about rather than to act. And, lately, it feels like I'm that latest thing.

Funny, because I go out of my way not to complain or talk about my health on a daily basis. I don't like thinking about it and complaining about it just reinforces the despair. That's one of the reasons I don't blog here very much any more.

All the pills I've taken, all the treatments, all the care in my diet and environment, that I am slowly improving, and the fact that yes, I am still trying new 'cures' all the time --- all this counts for nothing with them. And I do love them. I just wish they would respect me and trust me.

Because, it is just possible that I know a thing or two about what I'm doing. ...

.... But then again, I am female and I am younger than them, so obviously I know nothing about male dominated areas like medicine, agriculture or mechanics.

Sorry all. I just needed to rant.

Apparently, everything is Lyme

I've been avoiding thinking about medical stuff as much as possible since my recent visit to the hospital. Thinking about health makes my symptoms worse. But then again, so does not understanding something. So, I thought I would look up the latest chapter in my saga.

I have a tentative diagnosis of Crohn's. Well, it's an "in my opinion you have ..." diagnosis from the gastroenterologist (edit: because I trusted my spell checker and it thought I was talking about something else entirely) who apparently knows a thing or two about it. There's one more test to confirm the diagnosis but there is a wait list of over a year for non-emergency use.

From what little I understand, Crohn's has something to with chronic inflammation. Just like what Lyme does to me. Crohn's also causes weight loss, poor digestion and pain. Lyme is also causing this. So which is it? Is the Lyme in my gut making the inflammatory party or is it simply Crohn's? Or is it both? I'm confused.

It depends on who I ask as to the answer.

There was a psychologist that said something like that: we decide what answer we want to a question by picking who we are going to ask the question of. Was that Adler?

There is this tiny Lyme and Crohn's article on CanLyme.

I wonder if Inflammatory Bowel Disease like Crohn's can cause or contribute to other symptoms like Chronic Fatigue or my food sensitivities?

I wonder what holistic treatments there are for this.