That disease is quiet common here in WI. We have lots of woods and lots of ticks. Most people I've known get over it. My dh is a vet and always checking for it in animals.

Thank you :)

My problem is that Lyme Disease is rare in Alberta (If I really DO have it). Yes, if you can be diagnosed early (within a couple of months) and treatments are started immediately, then it's easier to get over it. Also there is only ONE doctor that is well learned in Lyme Disease, and he is retired. Because it is so uncommon in Canada, many schools do not believe that it should be taught. So I can just imagine how many more people could be suffering and not having a clue as to what they're suffering from - and I can sympathize with them 100%.

I never had the "bullseye rash", meaning I wouldn't have known that anything was wrong. I have been living with the symptoms for 5 years, and the longer I wait - the harder it will be to completely cure it.

The concerns from Canlyme is that I have been effected way past the recommended treatment point, and that this can be a long and frustrating process. Plus now that I'm having neurological symptoms - it may have left a permanent mark that may never be removed - but can possibly be helped with intense counselling.

I have to admit, I truly admire them for their determination that they're willing to offer me any kind of help throughout the process.

I have sent an email to the doctor that they have recommended - I will post any insite that he gives me.

Sound like you should move to the U.S......just kidding.

Trust me... It's been discussed in my family many many times ;)

Here are the list of the symptoms that i Have been experiencing - I didn't think much of some of them, until I read it... I never even imagined that some of these could be link together. And some of them, I thought it was normal - or because of stress from work.

You can find the full symptom list on http://www.canlyme.com/ under symptoms.

As for the Bites - I remember being bitten, but I don't remember having any sort of rashes.

Head, Face, Neck
Severe Headaches, Seizures (I can't say I have seizures, but I honesty can't say I haven't... I'm aware during these "eposides")
Pressure in Head, White Matter Lesions in Head (MRI) (going to request an MRI)
Twitching of facial or other muscles
Tingling tongue, cheek or facial flushing (I always thought my face was flushed because of high blood pressure, but it's normal, and has been every time i Have checked)
Stiff or painful neck
Jaw pain or stiffness
Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose (my son now things it's normal and clears his own throat all the time)

Eyes/Vision
Increased floating spots
Pain in eyes, or swelling around eyes (always being told my eyes are puffy)
Oversensitivity to light
Flashing lights/Peripheral waves/phantom images in corner of eyes


Ears/Hearing
Decreased hearing in one or both ears, plugged ears (at times)
Buzzing in ears
Pain in ears, oversensitivity to sounds
Ringing in one or both ears


Digestive and Excretory Systems
Diarrhea
Constipation
Irritable bladder (trouble starting, stopping) or Interstitial cystitis
GERD (gastroesophageal reflux disease) (prescribed Nexium)


Musculoskeletal System
Bone pain, joint pain or swelling, carpal tunnel syndrome
Stiffness of joints, back, neck, tennis elbow
Muscle pain or cramps (when I get the, they're SEVERE - Prescribed Quinine Sulfate)


Respiratory and Circulatory Systems
Shortness of breath, can't get full/satisfying breath, cough (been prescribed Symbicort)Chest pain or rib soreness
Night sweats or unexplained chills
Heart palpitations or extra beats (?? could this be the vibrations?)


Neurologic System
Tremors or unexplained shaking
Burning or stabbing sensations in the body Fatigue
Pressure in the head (sometimes painful, sometimes not)
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Lightheadedness, wooziness


Psychological well-being Mood swings, irritability, bi-polar disorder
Unusual depression
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily (driving family crazy)
Difficulty falling or staying asleep
Panic attacks, anxiety (been prescribed Ativan... it doesn't work)


Mental Capability
Memory loss (short or long term)
Confusion
Difficulty with concentration
Going to the wrong place (god knows how often!)
Speech difficulty (messing up simple words)
Stammering speech (cannot get point across)


Reproduction and Sexuality
Loss of sex drive
Unexplained menstral pain, irregularity (missed periods, negative pregnancy tests)
Unexplained breast pain, discharge (Extremely SHARP pains at times... no lumps, not during PMS)Testicular or pelvic pain (I do have ovary pains)


General Well-being
Unexplained weight gain, loss (??? I don't know maybe??)
Extreme fatigue
Swollen glands/lymph nodes
Unexplained fevers (low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
Pain migrates (moves) to different body parts
Early on, experienced a "flu-like" illness, after which you have not since felt well.
Allergies/Chemical sensitivities



Makes me wonder if the writer of the song "Head and Shoulders, Knees and toes" suffered from Lyme Disease?? :P

I think it would be hard for any one not to find a bunch of stuff on that list that they sometimes have in some way. But I do hope you get to the bottom of it.

I agree, and like I said - I figured that maybe some of them may not even be tied... but the symptoms that I have highlighted are the ones that have most recently over the past year made me think "what the **** is wrong with me"?

I can so relate to the bizarre health symptoms and the fear in trying to get to the bottom of it. I have fibromyalgia/chronic fatigue (which shares alot of symptoms with Lyme's disease and post Lyme disease syndrome, and often patients are misdiagnosed with fibro or Lyme's, when they really have the other. Although a person can have both, a number of people who've been successfully treated for Lyme's will still develop fibromyalgia/chronic fatigue).

Lyme's, fibromyalgia, and chronic fatigue are all disorders for which it can be difficult to find a doctor who really understands them. Many people learn more on their own, than from their doctors and therefore find they have to educate their doctors (finding a doctor willing to be educated by a patient is even harder than finding a doctor familiar with the conditions).

There's a lot of misinformation out there also, so it's hard to know what to believe and what not to. In a lot of ways it's like the battle of weight loss itself. You've got to learn how to become your own scientist and lab rat. Experiment and see what seems to work. Then stop doing what seemed to be helping and see if you feel worse. Then start it up again and see if you feel better.

Placebo effect does play a role, so it's hard to know sometimes if it's "really" working or just seems to be. A symptom journal including how you're feeling, what you're eating, what the weather is like, and what things you're trying can all help. There are several symptom journals on the market that are really good. You can just develop your own, but I found that the one put out by Memory Minder included a lot of things I never thought to include (like the weather). You can view inside the book at amazon.com so you can see what the symptom log pages look like to see if you'd want to buy it or just use it as inspiration to create your own.

Symptom logs are really valuable tools, though. I thought doctors would think I was a hypochondriac when I brought it into appointments, but I was surprised at the positive response. Not every doctor felt the need to look at the log, and were fine with my summary of what was going on, but all of them felt it was a good idea for me to be doing.

Good luck with getting to the bottom of this, and in finding effective treatments.

I can think of a few diseases that have many of those symptoms.

I do think an MRI would be a good idea though. If nothing else, it'll help you rule out things.

Good luck! I know getting a proper diagnosis can be a long and stressful process.

:lol3:

I understand!

I took the initiative and created my own starting today. I have body charts, and I mark on the chart, what pains me, when did the pains start... and an area underneath to write any other symptoms.

Here is what I have so far today:
- Vibrations in Chest (like cat purring against you), on and off, not painful
- Shart but breif headaches, feels like someone smacked my head with a hammer, pain dissolves then happens elsewhere on my head
- burning pain in back of neck (dull)
- Sore calf on left side
- Sore lower back (as always)
- Pangs on pain on jaw line under left ear
- Lump under ribs more painful today
- throbbing on left shoulderblade.
- Lots of energy this morning, after lunch I'm exhausted and can barely keep eyes open.


This is actually a good day for me today.

I would have normally just complained about being tired, and said nothing else. But now I'm learning to elaborate on EXACTLY how I feel.

I'm having difficulties finding a doctor to take me on.

My previous family doctor will not re-take me on as a patient (supposedly). His receptionists were QUITE rude!!! My husband, children and mom/pop in law see him. I have seen him before he moved offices. But receptionist refuses even acknowledge me as being a patient. My father in law has an appointment on the 27th and will speak to him privately about it - if doc still refuses me, I'm worried that HE will leave him. It's hard to find a decent doctor in Calgary right now. Many of them are just prescription-pad happy, they jot down what they think will reileve your symptoms and sends you along your merry way.

I'm looking for answers not drugs (not yet anyway).

I've got the retired doctor in BC pestering me to call him. I don't think it would be worth it unless I can actually start some sort of doctor/patient relationship with a new family doctor... once I have given him/her the symptoms and my health history and possibly receive any tests that they belive may be shine some light on my problems (it may not even be Lyme but something more serious!) - THEN speak to Dr. M.

I don't know anything about Canada's medical system, but if you're able to see a specialist without a primary doctor's referal, you might have more luck starting with a rheumatologist.

At least in the US, Rheumatologists are more likely than most doctors to be familiar with and understand Lyme's disease, Fibro, CMS, and CFID and other chronic pain syndromes of various causes.

If you test positive for Lyme's disease, they'll probably treat with you antibiotics until the infection is gone, but you still may have symptoms. The rheumatologist that spoke at our fibromyalgia support group, said that untreated Lyme's disease commonly triggers fibromyalgia and/or chronic fatigue. They're not sure why, but she believes it might have to do with the fact that when you get into a chronic pain cycle (no matter the triggering event) that it can be difficult to get out of. It's like being pushed into a swirling whirlpool, it doesn't matter what pushed you in (an accident or illness), it can be difficult to get out.

There are treatments and help out there, though - it just can be difficult to find if you don't know where to look. I don't know if there is a fibromyalgia, Lymes disease, or chronic fatigue support group near you, but if there is, I'd suggest you go to any or all of them. You'll find people to talk to who do understand your symptoms, and it's a great source for finding knowledgeable and sympathetic doctors (now whether they're taking on new patients or not, is always a different question), and also for which doctors to avoid. I've been in two fibro support groups, one in Illinois, and I just finally joined the local group. I went to the meeting last Monday for the first time, because a rheumatologist was speaking. As usual chronic fatigue, chronic myofascial pain, and Lyme's disease all came up in her speech and our discussion. And as had been true of the meetings in Illinois, a good deal of the discussion between members was on their positive and negative experiences with different doctors (and people were very open about naming names of those doctors if requested).

It's also a great resource just for realizing you're not crazy (or at least that you have a lot of company). Most people can really relate to being thought a hypochondriac, sometimes for years and years. But the thing is, people don't really suddenly become hypochondriacs - and they don't get better no matter what the treatment, and you find in the groups that many people have found treatments that make them feel better (thus proving they're not hypochondriacs).

As I think about it, I think if you can find a local in-person, or online support group in any of the disorders I mentioned, that would be the BEST source for information about doctors that you can trust not to dismiss your symptoms.

Also, this may seem really odd, but in your symptom journal track your sleep (whether it was hard to sleep, how many times you woke up, how long you slept - both for naps and nightime, any dreams you remember, any problems you had waking up, and whether or not you feel refreshed when you get up).

The dreams may seem meaningless, but remembering a lot of dreams, very vivid dreams, sleep paralysis (when you wake up and can't move, especially if you feel a presence in the room - or in otherways seem to be both awake and yet still dreaming at the same time), having dreams within dreams (waking up in a dream only to realize you're still dreaming).... they all can be indications of one of the specific sleep disorders that is very common among people with chronic pain syndromes. It's called an alpha-wave intrusion sleep anomaly. Google it, and if it sounds like you, it would be something you might want to see if there's any way you can get a sleep study done to confirm or rule it out.

Sleep deprivation, whether it's because of too little sleep, sleep apnea, or not reaching the deepest levels of sleep - are very common in chronic pain disorders. Doctors don't know what starts the cycle (whether it's pain itself, a disease process, or the sleep disruption itself - the fact is it might be any or all) but pain causes difficulties sleeping. Difficulties sleeping causes pain. Either can start a cycle of pain disrupts sleep, disrupted sleep causes more pain, more pain causes more disruptions in sleep .......

I don't want to throw a bunch of information at you that may not apply to you in any way, but the sleep disorder thing is really important. It's one of the last things (it seems) doctors look for, and one of the most vital in successful treatment (in my experience and that of many of the people I've met in the support groups). Getting not just the quantity, but also the quality of sleep you need, is often the single most important part of pain management for many disorders that include pain (even cancer - so again this isn't an imagined problem, but a physiological one).

One thing I also wanted to mention (I know I'm writing a book, don't I always?), is that especially for women with pain conditions, opiates often do not work very well, or work unpredictably (the unpredictable part is true of men with the disorders also, but for women they often don't work at all). So when a strong opiate doesn't work, a doctor is likely to assume that it isn't working because you've developed a tolerance to them and have been taking them long-term either legally or illegally and suspect that you are drug-seeking. They don't realize that the opiates aren't working, because of your body's specific physiology. It can be hard to find a pain medication that works, and sometimes the medications that work for pain aren't pain medications at all. It took me along time to find something that worked reasonably well for me. For me, it's a combination of amitryptiline to regulate sleep, mirapex to stop the rls and pmd, and tramadol and acetominophen for pain - the tramadol is less "addictive" than opiates in that there's no high at an appropriate dose, but physically it can actually seem more addictive if you don't realize that over time it can cause physiological dependence, so you have to wean off the medication gradually if you've been taking it regularly, because suddenly stopping can cause withdrawal symptoms.

I finally wrote down every single symptom that I have been experiencing over the past 5 or so years and booked an appointment with a doctor that works across the street from me.

The main doctor was away on vacation, but he had a nice woman doctor covering for him.

She brought me back into the office and went over all of the symptoms. She has requested the blood tests that were done a few weeks ago from the other clinic - they will be arriving today.

For once it's nice to see a doctor actually LISTEN to me. She agreed that it seems that there is something "not right". Because she is only covering for the doctor- she has recommended that i return to see him next week when he returns (he's a great guy with my kids when I bring them in).

When she got her prescription pad out - I started to protest. I'm already taking three prescriptions (Nexium, BC and Quinine Sulfate). She told me that she can see that I'm suffering and she wants to help relieve my symptoms in some way while I'm waiting to see the full time doctor. I can see her point - and at this point in time, I'll do anything that can help.

She has prescribed me Celexa for my depression mood swings and anxiety
and Flexeril for my muscle pains and seizures (muscle, not neuro) and sleep problems. This should help with my ongoing headaches, back pain, muscle cramps and spasming.

She has also suggested that I take an extra 500 - 1000 mg of calcium - to help with the muscle spasms.

She also agreed that I should start looking into massage therapy (which was what the other doctor had prescribed... I needed his "prescription" to be able to get it covered by insurance).

She also asked me if there were any illness that were common in our family including fibromyalgia. She told me to look into the symptoms of it, and to speak about it with the doctor when he returns.

We'll see how it goes.

BTW, I DID speak to Doctor M. He went over my symptoms and he ALSO asked me if I had ever been diagnosed with Fibromyalgia... it's a very common subject these days (I had brushed him off at the time, not knowing what it was).

After I got home, I did a little research - and yes I could match up almost every single symptom (that I wrote down) with the one on Fibro.

Could we have finally solved the mystery? We'll see.

Lyme Disease?
 

Wow, what you deal with on a daily basis is amazing! :strong:

Regarding Lyme disease, the two people I know who have it were undiagnosed for years. She'd even had the bull's eye rash & said so to a doctor somewhere along the line. The man I know apparently had gone untreated for probably over 20 years & it's caused complications in his life. When they put his blood under a microscope, the doctor was blown away by how many of the microbes (?) there were :dance: .

Anyway, the big thing I heard from both of them is NO sugar. Apparently the lyme thingies feed off of it. I just thought she was a New Age wacky person :flow1: but being a good vegetarian & not eating sugar (or much of anything else) sure keeps her thin.

Now I'm supposed to be on a no-sugar diet & I can't go for a day, so I'm sending you a lot of :dust: .

Thanks Verrine :) LIke I said, we're not sure what it is. There are tests in Canada - but they're less than 50% accurate. I have ordered a test from Igenex in California - I did so almost two weeks ago, and I still haven't received it - I'll have to give them a call and see what's going on.

I never did get the bullseye rash though... and I'm not completely sure how long the tick was attached. It could have been a few hours, it could have been all day - what I don't get though, was that I wasn't in any bushy/grassy areas, I had walked along paths and worked in an office building all day prior to seeing the tick. I MAY have brushed up against a tree branch or something while getting my kids (or dropping them off) from daycare.

If I had the choice between Lyme Disease, and Fibromyalgia - I would pick lyme disease hands down :) At least you can "cure" it with common antibiotics. With Fibro - there is no cure, you just have to deal with it.

Right now I'm on Antidepressants/antianxiety pills. The doc had given me Flexerol (muscle relaxants), but I had some nasty side effects (wakingup at night time feeling like someone had wrapped a barbed wire around my chest (under my breast area) and pulled tight. I was almost to the point of waking my husband up to bring me to the hospital - but I waited it out and it stopped.

I'll be meeting with the doc this friday to discuss everything.

I would also choose Lyme over fibromyalgia, but if does turn out to be fibro, don't let what you've read scare you too badly. While there is no cure, you don't have to just deal with it. I mean, you do have to come to grips with having a condition that may never go away (some people do experience remissions though), but there are treatments that do offer significant relief.

Even though it's not thought to be an autoimmune disease, fibro is a lot like rheumatoid arthritis (except with fibro, they don't think any actual damage is being done to the body, which is why no matter how bad your symptoms, there's still at least hope for a full remission at some point). But, like RA, the symptoms of fibro can be disabling, or they can be relatively mild and intermittant. The sooner it is detected and treated, in general the less severe the symptoms, and the more control that can be gained of the symptoms, especially if an underlying sleep disorder is found and treated.

The absolutely hardest thing about having fibro is learning to listen to your body, because that more than anything helps you get control of the symptoms. Burning the candle at both ends, really isn't an option with fibro, because if you don't rest when you need to, it will come back to bite you in the butt.

Even though I'm on disability for the fibro, I still feel I could have kept working, if there was a job that allowed me to completely make my own hours. I do have 40 good hours most weeks, they're just rarely consecutive. Having a job that allows you to work three hours and then take a two hour nap before working a little more, and allows you two or three sickdays a month (and more like a week every few months), just aren't very common. But, part of the reason I think my fibro got so bad, is that I ignored the pain for over 10 years. It wasn't until the fatigue got to the point that I was sleeping more than I was awake, and no amount of caffeine could keep me a wake, did I realize there was actually something wrong with me (I thought and was even told that the pain was just arthritis from being fat, and it would get better as I lost weight). A good part of my life I worked crazy swing shifts, and worked insane hours, and I really wonder if I didn't get my sleep cycle so out of sync that it caused, or at least triggered the fibro.

I don't know, and we may never know what causes fibro, but if you do have fibro, you probably will learn ways of feeling a lot better than you do now.

Sleep is often such a central problem to the fibro, that the rheumatologist speaking at our group said that if she can't fix a patient's sleep, she can't help them with the fibro. She talked about swing shift employees. She said that swing shift employees with fibro, almost never get better until they change jobs, because sleep in almost all cases is the most important factor in symptom control. So she listed sleep, exercise, medication, and diet as the four most important factors, and in that order - Sleep being most of the equation. I believe she said that 50% of her fibro cases don't need prescription meds if their sleep issues are resolved and they exercise regularly. Both help me tremendously.

So if it is fibro, it's far from a gloomy prognosis. It's possible that you will be someone who doesn't respond well to treatments; but it's much more likely that you will find things that help, and while you may have to rearrange your life a bit, it won't necessarily stop you from doing anything you want to.

I know it's hard not to, but try not to worry. And take care of yourself, because whether it's Lyme or fibro, you need rest above all else right now.