Wellsphere

Okay, this is interesting: Wellsphere.

I've been poking around wellsphere this morning and it looks to me to be a valuable source of information. I've already joined the Lyme Disease community and a community that is suppose to offer you support if you are trying to gain weight. On this site you can set goals for yourself, such as gaining 30 pounds, and as you work towards this goal, you earn points. I'm not entirely certain what these points are for, but it looks like a good way to encourage yourself to achieve health related goals.

I'm going to play with this site a bit more, then it's time to eat lunch.

Lyme induced chemical sensitivities

My chemical sensitivities are very... well, I would say 'interesting' if I didn't have to experience them for myself.

I know from reading labels on the few cosmetics that actually post ingredients, that I react strongly to words with 'ethal,' 'methal,' and 'glyc' (like glycol or glycerin) in them. That's not an exclusive list by the way. I feel that if I can stay away from chemicals that bother me then my body can put more effort into fighting this infection. The problems are that I'm not certain exactly what triggers my reactions and that I hate to impose my own needs on the people I live with. It's bad enough that I have to avoid these things, I don't want to prevent other people from living a normal life.

It seems to me that my reactions go two ways. The most noticeable way is when I'm suddenly exposed to too much of what effects me. For example, if I go shopping or if standard cleaning products are used near me. This has an instant effect on me. I'm dizzy and confused. Sometimes I faint (there is that autonomic nervous system again). Sometimes I cough. But mostly it's a response like slowly going into shock (tingling skin, digestion shutting down, vision decreased, dizzy, &c.). It usually takes me two or three days to recover from this. I retreat to my sort-of clean room (not allowed to remove the carpets in the condo but that will change in the new house), turn on the air filter, open the window and try to recover.

The other way I respond is slower. It's like how dust accumulates. You don't notice it at first, then one day the sun shines on the mantel and you think, Ahk! This place is a mess. I think it's a threshold. I can take a small amount of exposure one day, but if I am exposed to the same thing several days in a row, even in low quantities, my health gets far worse than when exposed to intense substances.

I think this might be like boiling a frog. (Sorry, for the nasty image. If it helps, I've never actually boiled a frog and have no intentions of doing so.) When you cook frogs, you don't put the live frogs into boiling water. They jump out because they recognize immediately that being immersed in boiling water is counter indicative to a long and healthy life. If you want to boil a frog, what you do is you put him in a pot of cool water. Let him swim around a bit, then slowly heat up the water. The change in temperature is gradual, so the frog doesn't notice the danger until it is too late.



(as a side note, I have no idea why I know how to cook a frog. I'm fairly certain that Mrs Beeton never wrote about this. Though she does have some experience with French cooking. But that's not important at this juncture.)


Once I reach this threshold, every little thing bothers me, even things that wouldn't usually bug me. I get grouch at this point, partly because I don't have the strength to clean my environment enough to make things better; but mostly, because this could have been avoided. I should never have got to this threshold in the first place. Chemicals make me sick, therefore, chemicals have to stay away from me and I have to stay away from them. I've changed my diet. Why is it so much more difficult to change this?

I have some friends who went through something similar. I suspect you will read this, so feel free to correct me on anything here. This sudden onset of a chemical sensitivity is very hard to pin down. The allergist cannot test for immune responses to inorganic substances (says my allergist) so the best thing to do is to remove all possible triggers from your environment.

From what I understand, you set up a kind of clean-room. You remove everything that could be a possible allergen, including the flooring, and you live in there for a few days to see if the symptoms go away. If they don't, you need a cleaner room. If they do go away, then you slowly introduce one thing into your environment at a time. If you react to that, then you know to stay away from that substance. The thing is, you have to be very strict with this and so far with this aspect of getting healthy, I suck.

One problem is, where I live now I can't remove everything that bothers me (carpet) and being in a condo above a smoker, below people that are constantly renovating (two years now) which desloges dust from our ceiling, and near a main road with plenty of car fumes coming in my window; I haven't been able to produce a clean environment to start from. In the new house I hope this can be done. But I worry. I forget so much, I let things slide and then I become that frog again. That stupid, forgetful, Lyme coloured frog. If I keep forgetting the importance of this, how can I expect others in the house to remember? They don't know how I am feeling, especially if I don't tell them. I'm worried and I'm disappointed in myself.

Dial 811 for non-emergency medical advice

One of the things I've noticed most over the last few years is that when I'm in the Emergency Room (either for myself or for a family member) there seems to be a good third of the people waiting there that could easily be seen at a clinic the next morning. On the other end of things, my family has the habit of waiting too long before seeking medical help. I think in this day and age, people just don't know when to seek medical help, and what level of help they need.

I know I've talked about this before, but it's interesting how much medicine has changed for the 'average' person in the last hundred to hundred and fifty years. It use to be, for the working and middle classes, that going to the doctor was a luxury. It meant taking unpaid time away from work, it meant travelling great distances, and it meant, depending on where you lived and what was wrong with you, a great financial expense. I wonder if today, in Canada, because so much of our medical care is provided at a greatly reduced rate, if we take too much for granted. Maybe we don't bother to learn when and for what we need to go to the ER for and what complaints can wait a few hours to visit a clinic. Waiting too long for medical care can also put undue burden on the medical system. Without going to medical school, how are we to know when to seek treatment?

I learnt this week that, in BC at least, we have a system in place where we can get this kind of advice. It's a non-emergency line that we can phone for medical advice.

Speak with a nurse about your symptoms, consult with a pharmacist about your medication questions, or get healthy eating advice from a dietitian. You can also find the publicly funded health services and resources you need, closest to you.

How come no one told me about this before? Apparently it's been around a while now. What a great idea. If people would use this more, it would take a great burden off our over taxed medical system, the health authorities would save money then maybe they could use some of that money to treat things like, I don't know, Lyme.

That number: 811. Easy to remember. 911 for emergencies, and one less (811) for non-emergencies. (I wonder if there is something like this in other parts of the world?)

A letter to my soon to be MLA

Well, I'm becoming a regular political activist these days. Two letters to politicians in as many months... I'm a regular wild thing.

I feel very impressed with Mr. Cubberley's letter to The College. He takes a much more didactic (I think that's the word) approach to the issue. Focusing more on the effect that their recommendations have on the people rather than my analytic way of analyzing the origins of their statements. I think his way is far more useful when it comes to patient care.

Here's what I wrote:

Hello David Cubberley,

I’m very impressed with the letter you wrote to the BC College of Physicians and Surgeons dated December 18th 2008 about the treatment and diagnosis of Lyme in BC. It’s a wonderfully well worded letter and it addresses many concerns that my family and I have. I want to thank you for bringing this issue to their attention.

I don’t know if this interests you; however, as I will be living in you constituency as of February 2009 (yet another family who has sold their home to pay for Lyme treatment in the US) I thought that it might be useful to know that Lyme treatment is a major concern for our family.

After many years of baffling my family GP with ever increasing symptoms, he suggested I seek a second opinion. I was very fortunate because my new GP, after excluding all the other possibilities, suggested that it could be Lyme. The BCCDC tests came back negative; however, given my history and symptoms, my new GP felt convinced that it was indeed Lyme and I had contracted it at least twenty years ago (possibly in Ontario, but more likely in South Surrey, BC). I don’t remember a tick bite or having a rash, but I was quite young at the time and didn’t know to look for it. Given the current climate fostered by The College, and the lack of training in this area, my new GP referred me to a doctor in Seattle who is better qualified to confirm the diagnosis and give treatment. I am, or I should say that I was before I fell too ill to continue and I hope to be again, a student at the University of Victoria. I’m only four classes short of my BA in philosophy and I can’t wait to get back there and finish it; though, I think I’ll focus a bit more on biomedical ethics side of things when I return. I have considerable student debt and have relied heavily on my family and friends to fund my treatment. They have been more wonderful than I could have ever imagined, but it shouldn’t have to be this way. My understanding of the Canadian health care system is that we should grant equal access to health care and not to be discriminated against because I managed to contract some spirochete. This makes me feel disillusioned in and disappointed by a healthcare system that works well in so many other ways.

My specialist in Seattle tells me that I have a good chance of defeating the Lyme bacteria with two to four years of treatment; treatment I can not afford. Unfortunately because the infection has gone so long untreated, there will most likely be permanent damage that will prevent me from living a normal life. I cannot imagine what my life would be like now if I had been diagnosed twenty years ago when I first began to exhibit symptoms. I have a more full account of my adventures with Lyme on my blog: http://ihavelyme.blogspot.com/ .

It makes me very sad, and a little angry, to think about how little training physicians have in this province when it comes to Lyme.

Thank you for taking a stand on this issue. It’s inspiring to know that an elected representative is willing to stand up and speak for his constituents. It doesn’t happen nearly as often as it should.

Avid voter,

Signed me.

Reading the College newsletter on Lyme

Thanks to the Lyme Action Group Blog, I've been reading a publication (pdf) produced by the BC College of Physician and Surgeons. As usual, I have good and bad things to say about this publication.

I'm curious where they got their numbers. So, apparently, now less than one percent of ticks in BC are capable of carrying Lyme. Last time I looked up the BCCDC, they said two percent. But that's okay, they might be working from different data. Perhaps older data? I would love to see them cite the source for this number - especially given the drastic changes in insect populations and distributions in our province over the last five years. Pine beetles anyone? Also the fact that we have a huge pile of snow on the ground in Victoria is visible symptom of climate change; something that also effects insect life from one year to the next. To be happy with this number, I would suggest testing ticks every year, or at least every two years to get a more accurate representation of the population and how it changes over time.

Next, even if we accept that less than one percent of ticks in our province carry Lyme, it DOES NOT FOLLOW that we have that few cases of Lyme in humans. It may be that the data is wrong, perhaps a sample issue (wrong time of year, not an adequate representation of the population...) or perhaps an issue that testing for Lyme is very difficult and not always accurate (which testing method did they use anyway?). Also, logically, if less than one percent of the tick population has Lyme DOES NOT LEAD TO less than one percent of the human population has Lyme. Legally and ethically in this country (and province), we are not permitted to treat patients on the basis of statistics. Each patient must be treated on the individual symptoms and needs that they present. It's an issue of autonomy and person, when we approach this from an biomedical ethics stand point. It's an issue of case law and the charter of rights and freedoms (section 15, my personal favourite) when we approach this from a legal stand point.

So, statistics, logic, ethics and law tell us that physicians cannot treat Lyme on the basis of how many ticks in this province have Lyme.

What's good about this article?

Well, I'm very happy that it acknowledges the possibility that patients can get Lyme AND that if left untreated it can lead to complications. I suppose that's a step in the right direction to having this illness recognized.

Side note: They tell me that Aids went through this kind of controversy when it was first discovered. I wonder what it must have been like.

I'm a bit sad by the article this write up refers to at the end. I think it would have ended better if it simply admitted (yes, some physicians actually do do this) that they don't yet know enough about Lyme and issue a call for more research.

In conclusion: I don't know if much will change thanks to this. It still remains that physicians in BC are uneducated in this regard. There is not enough data and therefore there is no one who is trained and willing (there are a few ID doctors in town who are trained'ish but not willing to see Lyme patients - illegal (discrimination on the basis of disease), but understandable given that they would risk their licence if they treated someone like me.

Nothing changes for me. I still must go to the USA each month for treatment and the BC health system still does not pay for it. At least people are talking about it.


Rereading this post I've noticed that my writing-brain is still on vacation. At least the Herxheimer is letting up a bit (or we are in for a few days of sunshine and good weather - it could be either). I'm off to read Mr. Cubberley's letter. I'm curious to see if we came up with the same issues. It makes me feel very happy to know that early next year I'll be moving into his area.

That's telling them

I like this:

BC's College of Physicians & Surgeons gets a talking to

One step closer to improving Lyme diagnosis, education and treatment. That's super-awesome for a politician.

Just thinking

I don't have anything specific to talk about today. I'm just in the mood to write down my thoughts and if, by some strange chance, they turn out coherent, I'll press the 'publish post' button.

It's been a pretty painful day today. My joints feel all swollen and rusty, typical Herxheimer for me, and I'm tetchy. I can't think clearly and words, well they are comply aphasic. Normally I can find a word close to the word I want, but not today. Today, complete sentences come out different than what I wish to say. "Can you help me move this to the other room?" came out as "Are you dexterous in your arms?" This has gotta be one of the weirdest herx days so far. I'm looking forward to tucking myself into bed and saying goodnight to today.

I should take pain killers for my joints. They keep telling me that being in pain causes something bad which leads to something which creates more inflammation and wrong immune responses. I can't think of the middle part, but the general theme is that I should nip pain in the bud. The thing is, I can't stand how even a simple Tylenol makes my brain feel. Start getting into the semi-opioids and I feel completely out of it. My GP once mentioned that it might be that my liver isn't processing certain toxins properly and this causes me to get stoned on one Tylenol.

So what do I do instead? I sit in my room, avoiding everyone so that they don't think I'm angry at them. I'm not. It's just difficult to be cheerful when everything hurts. Good grief, even thinking hurts.

But, Herxing is good. It's a sure sign that bacteria are dieing. Death to spirochetes! That's actually an amusing name for a blog. Lyme: Death to spirochetes! Maybe not.

My specialist specifically said that a strong Herxheimer reaction to the new antibiotics was desired. It means that these drugs should be compatible for me. to me? Ug. English brain fading.

So, I'm happy, and I'm grumpy, and I'm tetchy. The holiday season is a bit stressful, especially because I wasn't able to make the gifts I wanted to give. Then again, I can finish them in the new year and pack them away for next Christmas. I'm especially glad I'm not spending time with difficult family members; on either side of the family Christmas tree. I can imagine hours of listening to some distant relative, drenched in perfume and fabric softener I might add, lecture me on how I should just try harder. After all, they would say, it's all in your head, just put the effort in. Just because they may have been a nurse twenty plus years ago, or knew someone who was a one, doesn't mean that they are up to date on what's going on. I hate being young and sick. At least there is a good chance I'll get better, but the way some people act towards me...

I'm so glad I'm not going to enjoy that pleasure this year.

I can't actually tell if this is a happy post or a sad one, so I'll label it both. It's just what it is I suppose. Like everything else these days. I have very little control with this whole thing. I can only control what I do with the energy I do have. There is something very zen about just letting things happen. I'm not good with zen. Zen is not me. I like control. I miss it.

Herxing for the holidays

I declare this a herxheimer.

The weather isn't helping (I still think my bones are telling me that there is more bad weather on the way) but at least all this snow is beautiful. It makes me want to move back to Ontario (the land of my early childhood). Then I remember the mosquitoes.

I'm looking forward to a day of baking holiday goodies, cleaning house, and weaving. The way I'm feeling so far this morning, I have my doubts that this is all going to happen, but I'll do my best.

I have such a craving for chestnuts today. Is that usual?

Herx or weather?

Maybe it is the weather after all.

From UVic School-Based Weather:

FPCN11 CWVR 201307 Forecasts for the south coast of British Columbia issued by Environment Canada at 5.00 AM PST Saturday 20 December 2008 for today and Sunday. The next scheduled forecast will be issued at 11.00 AM.

Greater Victoria. Wind warning in effect Snowfall warning in effect. Today..Cloudy periods. Increasing cloudiness late this morning with 30 percent chance of flurries this afternoon. Windy. High minus 3. Wind chill minus 18 this morning.

Tonight..Cloudy. Snow and local blowing snow beginning this evening. Amount 10 to 15 cm. [That's huge for our city and it's on top of 20 or more cm of snow already on the ground] Wind east 30 to 50 km/h becoming southeast 60 to 90 this evening. Temperature steady near minus 3.

Sunday..Snow and local blowing snow. Amount 5 to 10 cm. [what? 5 to 10 MORE cm of snow?] Wind southeast 60 to 90 km/h. High plus 1.

We will just have to wait and see if I feel better after the weather changes or if it is a Herx.

Herx number three?

Either I need more sleep, the weather is about to take a turn for the much worse or I'm entering my next Herxheimer. I did sleep fairly well last night, I haven't checked the weather report yet, but I did double up my new antibiotics earlier this week which are suppose to produce a herx (if they are working) and there has been a fairly large amount of stress around me lately which is also herx-friendly. I'll know by tomorrow if it's a herx or not.

The weird thing is that my teeth get sore and loose just before a herx (or bad weather) which I don't understand. I know I should go to the dentist but they not only costs money, they hurt my jaw. How is a dentist going to get at my teeth when the jaw no longer opens more than a few centimeters? I have no idea. I'll worry about it later. I have some clove oil hanging about which should take care of the tooth ache which will go away in a day or two. It never last more than three days. Weird, eh?

Biofeedback feedback

You know, I wasn't certain at first, but after three days of practicing biofeedback (it gets really hard after the first task, you see, we have these tasks that we try to perform by relaxing our thoughts or our body or by breathing, tasks like stacking rocks by not being emotionally attached to our thoughts, and the first one, creating a stairway with our breath is really easy, but then, well, my mind doesn't like not thinking. It's weird.) I'm pretty sure that I can feel this strange, but slight electrical current in the finger sensors. If I put in on my hand, my poor arthritic hand, it seems to inflame the bits that hurts (which are up the wrist and quite a ways away from the finger sensors). But if I put it on my right hand, my slightly more healthy hand, then all I feel is this buzzing like slight electric pulses running through my bones and skin from one sensor to the other. Actually what it feels like is that it's coming from the two sensors (not the one that takes my pulse) and meets somewhere in the middle of the back of my hand. It's the oddest feeling and so slight that it's almost not there. I couldn't figure out what on earth it could be doing.

I looked it up and sadly I can't remember the details right now but the sensors test the flow of electro-something on my skin with a galva-something. Yep, gotta love that Lyme. I miss my brain.

My dad thinks that I feel it because, as my specialist said, the Lyme bugs have eaten away the insulation around my nerves. This is also, my dad says, I can't remember that particular conversation with the specialist, one of the reasons why my autonomic nervous system is the pits. Now, if only I could remember to take my fish oil, it is suppose to help repair this and grow new insulation or something.

I'm actually far too tired to be blogging right now, so I'll cut this short and go to bed.



Night.

WHO on Electromagnetic fields

Interesting document (pdf) by the World Health Association on Electromagnetic Fields and their effects on health.

Environmental Health Association of BC

Now this I like: Environmental Health Association of BC

After breakfast I'll spend some time reading their web page. Maybe there will be something there that can help with my new adventure.

Biofeedback and Lyme

One of my biggest problems stems from my autonomic nervous system acting up. My chemical sensitivities, my food sensitivities, my response to stress, and my ability to faint at the drop of a hat; or, I should say to faint if a hat drops on me. These all trigger a response that is controlled by the autonomic nervous system (especially that vagus nerve thing).

From what has been explained to me by various physicians, the autonomic nervous system is an older part of the brain. It controls, usually without us even noticing, the every day functions of the body such as heart rate, breathing, perspiration, blood flow, digestion, &c.. I'm told that when the body is perceived to be under threat, say a lion is trying to eat you or you fall off a boat into really cold water, then this system readies your body to face these challenges. It, I'm told, stops processes like digestion so that your body can focus on more important issues like running away from the lion. Or, with the hypothermia example, it shuts down blood flow to your extremities and brain so that it can focus on preserving the core of your body as long as possible.

With me, this system is over enthusiastic. If I eat a food that triggers an IGG immune response, like soy, my system thinks that it's under threat and shuts down my digestion for four days or until I throw up. If I take acupressure or massage (we found that one out at the physiotherapist's) then my body responds by sweating, fainting, depressing functions like remaining conscious and basically goes into shock. It's worse with needles. It responds in a similar way, albeit, normally slower, to chemical stimulus. When exposed to petrochemicals for example, I get dizzy, confused, &c. The symptoms vary depending on chemical, intensity, and duration of exposure. But again, this is the same system of my body that is responding to a perceived threat.

There are naturopathic therapies for this sort of thing and homeopathic ones, some of them I am on, but it actually does very little to help except in the very short term. My GP and myself are of the opinion that allopathic medicine won't do much to help me in this area. My GP suggested biofeedback.

I know a surprisingly large amount about biofeedback, especially considering that I've never took the effort to read up on it. Ten years ago, wait, it was more than ten years ago now - am I getting old? Anyway, just over ten years ago, I met this doctor who had a very impressive resume (worked high up in the UN, was head physician for her country and their leader for several administrations, &c. - all in all, a very nice and successful physician). At that time she was working with and researching biofeedback. It was very interesting to talk with her.

What is biofeedback? Well, it is, at it's most simple construction, a way to be aware of your body's basic functions like breathing, heart rate, and other responses. By becoming aware of these, you can learn to alter them consciously. For example, you can learn a breathing technique that will reduce the tendency to faint when exposed to stimulus like having a needle poked into your arm by the flabotimist.

I feel confident that the science and theory behind biofeedback is good. And after much discussion with me, my GP recommended Healing Rhythms by Wild Divine as an affordable alternative to guided biofeedback training. This system I can use in my home every day before I go to bed, or anytime I have a spare moment. It comes with some finger sensors and software that allows you to see your response to different stimuli and also teaches different techniques on how to control your breathing, heart rate, &c.

My package arrived yesterday and too my disappointment, had over $100 COD. This was annoying as I had a long discussion with the woman I ordered it from as to the shipping. I was expecting to pay GST because they always want you to do that when you order something from the USA, but to pay an almost $60 brokerage fee to the shipping company on top of that was shocking. The parcel had also been opened and sealed up twice en root which also rather annoyed me. Everything was there that should be, but they certainly were vigorous at rummaging through the contents.

So, you know, I was a bit annoyed, but also excited at the prospect of becoming more healthy. I'm going to have to warn you that if you choose this product, and you are in dire need of it, don't install it yourself! After three hours of intense frustration, bouts of shouting, and the occasional bursting into tears, it was finally up and working. 'Though my heart wasn't - I developed that stressed induced arrhythmia I get sometimes. I consider myself fairly computer literate, so to take that long to install software, update software, change settings that new software changed back to original settings (four times), try program, update supporting software again, &c. is a sign that for those who aren't on friendly terms with their computers should most definitely avoid installing this themselves.

Once it was done I was filled with that sense of joy one can only feel upon outsmarting technology.

I gave it a go for a couple of hours last night, practicing calming down, and by the end of it my heart was beating fairly regular and I managed to sleep better than I have in a month.

My conclusion, once it's up and running this product is very helpful. I am confident that this will be a big help in the long term as it is at the very least suppose to improve immune functions.

Amusing myself with Lyme

I'm having fun reading through all these Lyme jokes. Why didn't someone tell me about them before?

Here's one from Symptoms checklist:

As a Lymie was driving down the freeway, his car phone rang. Answering, he heard his wife's voice urgently warning him, "Herman, I just heard on the news that there's a car going the wrong way onI-15. Please be careful.""Hell," said Herman, "It's not just one car. It's hundreds of them!"

Now, this is exactly why I won't drive until I'm better.

Made me chuckle

I got a lovely smile this morning while attempting to catch up on the 400 odd blog posts I haven't read in the last few weeks.

As a holiday present, there are some funny jokes on A Lyme Disease Journal. My favourite:

Three ladies with Lyme were discussing the problems of living with the disease. One said, "Sometimes I catch myself with a jar of mayonnaise in my hand, in front of the refrigerator, and can’t remember whether I need to put it away, or start making a sandwich.”

The second lady chimed in, “Yes, sometimes I find myself standing on the stairs and can’t remember whether I was on my way up or on my way down.” The third one responded, ” Well, I’m glad I don’t have that problem; knock on wood.” as she rapped her knuckles on the table…then said,”That must be the door, I’ll get it!”

I know, if you don't have Lyme or someone with Lyme in your life, you probably won't get most of these; however, if you do have someone Lyme-like in your life, I hope they make you smile as much as they did me.

Laughter is after all, the best medicine.

Back from the doctor's

It's been a busy week. I've been spending most of my spare time sleeping since I've come back from Seattle. There have been days when I haven't changed out of my PJs until the evening when I get ready to go out for a holiday dinner party (my Guild sure knows how to throw a Christmas party). Still, it's been a good week. It even snowed for an hour yesterday night. Then it melted which was great because we had to drive home. Snow and driving, in this city, do not go well together!

So the visit to Seattle to see my specialist went very well. I was so disappointed last month with my rotten-banana-antibiotics. They made me so much better in some ways and dangerously worse in other ways. It was amazing, but I could think when on these pills. Worst thing is that I started to loose weight again, we are talking about a pound a day, some days more. I'm still working on stabilizing my weight again, gaining weight is a luxury that will have to wait until I'm healthier; simply not losing weight is my goal just now. But at least I had a week or two when I could think. That was nice.

I am beginning to suspect that this is what senility is like, but honestly, I can't remember the simplest things like, for example, my name level on the name of the person I am speaking too and have known quite well for years. The simple concept of time keeping has become abstract and meaningless. Dates have no relevance any more - though, perhaps, this is more a side effect of not working or going to class.

Anyway, I was beginning to feel bad, both physically and emotionally, about my healing process. I had succumb to doubts. I mean, how do you know you are on the right path? There are so many voices telling you so many contradictory solutions, how do you know who to listen too?

I feel now that I shouldn't have gone as long without seeing my specialist, or at least phoning to talk with my specialist. (sorry, the sentences get awkward when you are trying to avoid gender pronouns) For the first fifteen minutes of the appointment, I told the specialist how the medicine had made me feel. The next five minutes the specialist told me that this was a good thing because now we know where the bacteria are hiding out (the infection is strongest in my brain - I bet you're not surprised, I'm certainly not) and we now have more information and can tailor care to my specific needs.

The last forty minutes of the appointment was spent convincing me that I'm not doing as poorly as I think I am. In fact, given the state I was in when I first met my specialist, I am doing great, not good, my specialist made a very strong point of saying the word 'great' and wouldn't allow it to be subdued to the simple 'good' that I had hoped for. It's still a very, very long road ahead of me. But I'm doing the right things by changing my diet and environment and every thing in my life and this is perhaps why I am doing better than expected.

I think I need to start keeping better records of how I feel from day to day and from week to week. Maybe I will treat myself to a nice journal today, I am after all a Pisces and we are known for our love of journals and calendars and anything that helps us keep a record of our thoughts, knitting patterns, feelings, and phone numbers. Maybe if I can keep a record of my symptoms, I would be able to see if they are improving over time. Since my memory is so short, or I should say that my short term memory is absent, I need some other way of evaluating my progress.

My specialist also gave me a few tips on how I can do better. Staying away from malls is one vital task I must do (after today - I might sneak in and buy that journal, then swear off malls for the rest of eternity). Christmas shopping is to be done online or via a proxy who can go into the shops for me. Also, trying to gain weight would be a very good thing - I am working on that. I ordered a very simple and small thing online which should help me emotionally. At the very least it will give me an outlet for my negative emotions (something I'm not good at getting out). I'll show you when it comes. Also, I have something else coming which should help with my autonomic system and all the troubles it produces. This was recommended by my GP and, though it is a little bit pricey, I think it will be a huge help in the long term. Again, I'll show you when it arrives.

So, I'm on the right track. The new antibiotics don't taste like rotten bananas, they penetrate my brain so maybe I'll be able to think again some day, they don't upset my stomach, and they also prevent malaria. So far, the only thing bad that they do is make me extremely fatigued. I can live with that though it will limit the number of parties I attend this month.


As I read this post, I think my brain must still be extremely scattered. It could be the fatigue or a deep need for a second cuppa coffee. I think I'll go visit my Lebanese grocer and get him to make me some Turkish coffee. That stuff will wake up a rock which is what I feel like today - a not awake rock. I also do a good chunk of my holiday shopping there, dates, figs, &c. You know, traditional Christmas foods. I love giving away food, especially at Christmas.

Here's something I need to ask my GP about

My GP has been onto me to cleanse my system. Everything from the obvious allopathic necessities of not eating processed foods or exposing myself to mold to the more naturopathic and less researched avoidance of things like dirty electricity and to use a gentle cleanse of the unusual suspects from my body (see this site for more on that). So I was very interested when I came across this article while I was drinking my coffee. In particular, this section:

One that I learned about recently is the Comprehensive Detoxification Profile test, offered by Genova Diagnostics: http://www.genovadiagnostics.com/. This test analyzes saliva, blood, and urine after taking challenge doses of caffeine, aspirin, and acetaminophen, in order to assess Phase I and Phase II functional capacity of the liver to convert and clear toxic substances from the body. It does this by identifying the absence of liver enzymes that are responsible for processing each of the above toxins.

It's very interesting to me because my liver enzymes are undetectable by the regular blood tests. No-one knew what that meant but they are the only readings that were definitely a sign of something being wrong with my body.

I have more reading to do on the topic when I come back from my specialist and once I get a hold of myself. I can't believe myself, I had such a great time yesterday day, better than I've had in months. I spent time with people I love and admire and did things that I enjoy. Yet, when evening came I was full of self pity. I don't understand myself these days.

yeah, okay

Yeah, okay, I suppose I should tell you why I haven't been online much lately. The thing is, I'm tired. I keep forgetting my pills (probiotics and nutritional supplements) and the ones that I do remember to take have such horrid side effects that make me far more ill than the original infection. I hate the fact that I can't take care of myself. I love all the kindness and support I get, but I hate myself for needing it. I miss working. I miss doing things for myself. I miss being able to rely on myself. I don't want to have to second guess myself at every stage. I hate that I don't know how to answer the question 'how are you?' What is the answer? The truth? Do people want to hear that I'm miserable and in pain or do I tell them that I'm hanging in there, even on days when I don't feel like I am? Even enjoying myself with people I love makes me miss my old life so much. I just hate where I am at so much. I need to pull myself together and get back on track. I'm only part way into this journey, and it has a good chance of ending well, I just feel like I've lost sight of what I should be focusing on. I feel like I'm being such a sissy when others have so much more going on in their lives, things that are far more horrible than me. Why should I have so much trouble dealing with this when they face their adversity with such courage?

Next week, I'm off to see my specialist again. I'm full of hope that my specialist can get me pointed in the right direction and looking at things from a different point of view. I don't know if I'll be blogging much, I might just take some time off from the Internet. Maybe I won't even check my emails for a week. I'll just see how things go from here.

Not much

Not much to say today except that I wished I believed in God or some other sort of divine power. Then I could pray to him, her or it that I didn't have to have Lyme. I really envy people who have religious faith. I think that their world is better for it.

Thank You

A big thank you to everyone who participated in Trampled by Fleece and congratulations to those who received a thank you prize.

I don't have the words to say how wonderful it has been. But I would like to give an extra big thank you to those who made this possible. You really are the salt of the earth.