Thursday, September 04, 2008

Lyme in two parts: part two

Well, I still have Lyme, hopefully less of it. I started treatment today and I tell you right off the bat, I feel like crap.

So, what is Lyme? Well, let’s use a metaphor (they always come in hand this time of year): Lime is a large group of teenagers of rather annoying sort. They break into your home while you are off camping. The have some huge parties with beer and lots of ‘fun’ chemicals and totally trash all the furniture. That is about all people can agree on when it comes to Lyme. It’s annoying, but if you are one of the people who bought insurance (subscribes to the party line) then two weeks of repair men cluttering up the joint (antibiotics) should do the trick.

If I were to be completely non-controversial, I would say that Lyme involves bacteria entering the bloodstream and giving a collection of symptoms that often include a feeling like Rheumatoid arthritis. That’s about all I can say without stepping on someone’s toes. Since when did I care about other peoples’ toes?

The party line: Lyme is only transmitted through a tick bite. It takes several hours for the bacteria to transfer from the tick to your blood. It causes a distinctive bullseye rash at the infection site and presents with stiff and sore joints. The blood tests are unreliable, but that’s all we’ve got. Lyme is easily destroyed with no more than two weeks of antibiotics.

Even though the official criteria for diagnosis and treatment (both in Canada and the USA) is far more lax than this, when it come to practice certain pseudo-legislative bodies make it all but impossible to act different than I’ve outlined here. They officially acknowledge the limitations of this approach and cite the need for further research in order to change their ‘guidelines’.

The other line: Lyme is really complicated.

Okay, there is no way in this world I can tell you everything that goes here. I’m new to this and haven’t read it all. I’m not even going to tell you everything I know; however, I will tell you what makes sense to me (I’m not saying I believe it. I don’t know what I believe when it comes to Lyme. I’m just saying it makes sense).

Lyme can enter the body at least through tick bites and most likely through flea and mosquitoes bites as well. The bacteria can survive in saliva and other bodily fluids, but is not yet proven if it can be transmitted through sex or by giving blood. Actually, as far as I can tell, this hasn’t been researched. Many people say that it can be passed from mother to foetus if the mother is infected at or before the time of pregnancy. The bullseye rash is not as common as formally believed. Depending on who you read, it is present in 20 to 40% of cases. The actual symptoms of Lyme are numerous, varied and can change in an individual over time. One month your left knee might be giving you marry heck, then perhaps your head won’t stop hurting for five months. Because the blood tests are so inaccurate, one must rely on a combination of patient history, other blood work (vitamin deficiency &c) and clinical diagnosis to determine if the patient has Lyme.

Lyme has two stages, acute which is present at the initial onset and last a few weeks or months, and chronic which is the real devil. Chronic, if left long enough can leave a person with Lyme symptoms for life, even if all the bacteria are destroyed. This side of the controversy is surprisingly unanimous that two weeks of antibiotics is Entirely Insufficient to treat either stage of Lyme. What the correct course of treatment is; well, that’s up for debate. Most of these people will also tell you that a holistic approach must be used in combination with the antibiotics. This makes your bioterrain less favourable for the little bacteria. For example, foods that decrease the amount of oxygen in your body, like processed foods or those containing sugar, are exactly what the littler buggers want. Lyme makes the body crave processed fats and sweet things, but if you can stay away from them for a year or preferably, forever, then you are more likely to recover. Even though a Heart Foundation may tell you that Gold Fish are a ‘healthy snack alternative,’ buy some carrots instead.

The biggest problem for people on this side of the debate is that there is not enough research being done of the diagnosis and treatment of Lyme. So, I guess they have something else in common with the party line.

Now, where does that leave me?

I have two doctors that I trust: a GP here in Canada and a specialist in the USA. The latter is expensive and hard to get to. But, there is no one here in BC who can help me. There is no-one left who is acquainted with this illness.

The specialist says I need A, B and C, coupled with nutritional supplements and other good stuff to make the body strong enough to handle A and B. This specialist says that I will need A, B and C, or something similar to them depending on how I progress, for at least two years, probably four. I feel that this person is knowledgeable and experienced in this area. I would like to try this person’s treatment, but find it difficult to afford. As a student I make somewhere around three months worth of treatment in a year, but that’s if and only if I don’t spend anything on luxuries like food. All is not lost as A and B are covered under the local medical plan here in British Columbia. However, the catch is a local physician must prescribe it.

I had a talk with my GP and we went over my options. My GP is bound by the local – well, it’s complicated and it makes me grumpy to talk about it, so I’ll say that the GP’s hands are tied and is risking his/her medical licence to prescribe as much as he/she did: One month of A, after which I will have to spend one or two weeks without treatment and if it makes me worse to be off the treatment, then I can have another month and start the cycle again. B is not available to me in British Columbia at this time and for C I have to go elsewhere. Now this is depressing because the specialist said that I could not get better without B. But, at least it is something. It’s a start. I can take action. I’ve started treatment A today and if it works, my body should feel like the apocalypse. I’m not really certain what to hope for at this point.

End of part two.
I hope this was interesting to you.


Josiane said...

That was very interesting, thanks for sharing the info. I know you only scratched the tip of the iceberg, but it's still more than I knew.
Our health systems seem to be so sick, sometimes... It's really sad that a GP cannot help a patient struggling with a (finally diagnosed) disease get a much needed treatment. I somehow wonder if things would be easier here in Qu├ębec, but really I'm not sure at all.
Good luck with the treatment. I hope it helps while not being too hard on you.

Marigold said...

It sounds like dealing with the Lyme disease is confusing and frustrating. I'm so sorry! I'll keep you in my prayers, that you CAN get the treatment you need.