Guess I'm venting...Day 18 of Antibiotics (oral)...feel like I have the flu all over but I don't...Achy achy muscle soreness all over - particularly in my back - trouble speaking - warbly voice. Tired. Exhausted. Occasional gentle hot flashes. The paranoia / anxiety / self-consciousness goes without saying. It's really wierd to have "visitors" in my brain and nervous system. I liked it better when I was *alone*. That would be 4 years ago, but the brain symptoms have come on more *hard* in the past few weeks, and though in some ways they're clearing, the anxiety is worse.

I came back with one of those "equivocal" tests from IGeneX; 2 positive bands, though, on my IGG ->30 KDA and 41 KDA, and 5 others were equivocal. I wish it had come back a resounding positive, because that would help with the anxiety - at least I would know conclusively that I am aiming at the right target, and though the end isn't "near" - it would be "in sight". And that it wasn't about "my end" after all. Because as I realized a few weeks ago, before I started the antibiotics, it felt as simply as I was dying, and no one knew what was going on.

Though I am happier because I can type again (things are getting somewhat better) - before I would mix up the characters. And I can digest so much more! I had had diarrhea for a year, and was vomiting on average 3x/week (that means sometimes it was 2wice a day...)

I read the posting where on this group it's said that equivocal is treated as "positive"...but you see, in Canada, there are so few LLMDs...my ID doctor, who I like quite a bit, said it was negative, but when we discussed it, he said it was suspicious enough to treat it with Amox and see what happened. If it was Crohn's -> the diarrhea would get worse (well, it's better), and the cirrohsis (sp?) that was also suggested due to *now* elevated liver function - well that wouldn't explain the blotchy vision, and speech centre imparement.

I feel like such a wimp - because I *think* I should be full of beans and getting things done. It used to be my MO to just get on with things and ignore symptoms as being psychopsematic...easy for me. I thought all the nervous system involvement was due to all the vomiting - lucky for me, because I avoided the visit to the Neurologist - which doesn't sound like fun at all.

I'm a bit pissed off, because I kept saying it was a parasite, because the dog was sick too, and it fell on deaf ears for the most part. I wish someone had send me to the ID specialist in January, when my treatment for Giardia cleared things up significantly, but not entirely (Flagyl), and then relapsed after a few tries at the Flagyl.

Things in Canada leave some things to be desired.

Anyway, wishing you all a good Sunday. Glad to know you're here. Wish there were a support group in Toronto. I'm not used to complaining, but it seems I am more and more (and more self-conscious about it, due to the anxiety, and of course the fact that I _love_ to be positive and self-sufficient). I need to complain...and speak with others that are going through the same thing - let me know if there are enough of you in Toronto and area who would like to get together every few weeks / once a month?

What's even wierder about all this, is that the symptoms come and go - even the anxiety ones...

I should ask - my ID doctor seems reticent to give me IV antibiotics - it's rarely done in Canada. He is talking antibiotics + probenecid to raise the blood levels to "same as IV levels". Do any of you have experience with this? I sure want to make sure I do everything I can to avoid being one of the chronic Lyme cases that have to live with it the rest of their lives.He was right about some things though - he gave me a package of antihistamines to go with the antibiotics - for the die-off reaction. I missed one dose, and _ran_ to catch up on that one the following morning. Is week 4 going to be worse? Will the higher dose make the symptoms stronger?

Best wishes, and good health,

Someone will be along soon to give you beginner's links, although they've been printed recently, if you just want to sift through the last couple of days' postings.

It doesn't help that I think I am not suitable for human consuption right now, so I am isolating, which probably is worse, but the babbling and confusion is so humiliating...especially in my moments of clarity.

I think I will take a warm bath with the Epsom salts that were suggested in another post.

I am feeling better now - it's so weird - it would be easier to believe it was out of my control if the symptoms (including the psychological ones) were constant.

I did see the Canlyme site - in fact, it was that site that came up in Google after a year's searching on the web, inputting my seemingly unrelated symptoms...

Carryon has been a great help.

Talk to you again soon.

Best,

i am from canada as well... from the other side of the country but still i wanted to respond because i understand your frustration with equivical tests. i am in the same boat. But please don't despair. Concentrate on finding a doctor who will continue to treat you properly and i know you will get back to what you do best.... and by the looks of your website its music!!

have you seen an llmd in Ontario or maybe you could get to see someone in the states?

Thanks for the reply and thank all of you for the warm thoughts and good wishes.

I have a doctor here who is somewhat? Lyme Literate - he has treated a number of people with Lyme, knows about IGeneX!! but at the same time, I wish I were dealing with, say, a second opinion in the US - I would rather be seen by someone who routinely uses IV treatment, believes in the cyst form, and would tell me my equivocal tests mean "positive". Those three things would make me feel more confident in the treatment I am going to receive. Also, I'm tired of asking so many questions, and being so on top of the treatment I am about to get / being on top of refusing all those misdiagnoses, because they seemed counter-intuitive to me, and I just didn't buy them. Hard to fight the fight when you're so exhausted all the time.

Mind you, I have evidence that things are improving, despite the unusual moods, self-absorbed talking, and anxiety (this is all so humiliating). Sweats, flu-like symptoms, etc. I was unable to eat anything but meat, fruit and vegetables - which fortunately I figured out, but now my diet is becoming more and more varied, and no vomiting for almost a week now, I think.

The doctor I'm seeing here is Baghdadlian. More open and approachable than most I've seen (various species of doctors), but I guess I would rather he was even more in line with the docs in the US.

I'm looking forward to my next appointment - I would sorta like to see him sooner, and it's not till the 20th (almost a month since last time). I sorta would like to get on with the heavy doses, and be as miserable as possible as quickly as possible to get it out of my system once and for all. What a horrible disease.

I ran into some folks from NY recently, and did you know that commonly in doctor's offices there, there are POSTERS with Lyme symptoms up on the wall?

What a different environment that is.

I kinda wonder what MADDOG means when s/he says it's like a 3rd world country in Ohio re: Lyme. I sure liked the doggy fever .

I am so glad this support group is here...what a relief to be amongst so many other people who are fighting this. I feel better because the depression / self-conscious anxiety is passing, but also because I now have a group I can at least "internet" with.

Best,

Well, if it's any consolation, I live in the NY county with the highest incidence of Lyme, and it still took 2 years to get properly diagnosed (first blood test came back "negative" and it was dismissed after that). We even have signs at the entrance to all our city parks etc warning folks to watch for ticks because of the high danger of Lyme.

I think the real problem is that most people simply look for the bullseye and don't consider Lyme any further than that if they don't have the rash. As folks here on this forum say, much of this depends on finding a good doc who can put 2+2 together.

Hope you feel better soon,
peanut

if you want you can email me. my email is in my profile. your email was not available.

Anyways, just wanted to pop my head in and say that I think your complaints are extremely valid. Are you able to come to the US for treatment, or have to stay there/unable to come over?

Just wanted to give you a big cyberhug -((((Alyssa))) and to say I am glad that you have reached out to this group. You sound so much like every other Lymie that I have talked to. I have no doubt that it is Lyme.

Just keep saying: "I will get better" and one day you will find that things are better.

Hang in there.