I'm back (used to by Nicky D forgot my password and everything)

Hello there,

I got Lyme disease 4.5 years ago now. Started treatment in August 2009 (about when I started posting here). I'm from Canada and had to go to Seattle for treatment. I was on oral antibiotics for 2 years, when I decided to stop. All my symptoms weren't gone, but the constant questioning I had got from doctors in Canada had made me wonder if all my remaining symptoms were either "normal" or imagined (I still had joint pain, muscle pain, fatigue, muscle twitches etc.) By that point I was having stomach problems and sick of being on antibiotics. I hadn't seen any big improvements over the last 4 months- but I am pretty sure now that was because my anxiety over doctors appointments lead me to mention only a portion of my symptoms, and downplay how sever they were (I have this problem where once I've listed a certain amount of symptoms, my brain decides mentioning any more would be bad, or make the doctor think I'm crazy).

Well, you all know where this story is going. I stopped antibiotics July 1. I got progressively worse for two months- including developing sever bursitis in my hips and knees (and I now have it in my butt as well). At that point, I called my LLMD. He wasn't 100% sure it was Lyme, but suggested I could try antibiotics right then, or wait 1 month. I decided to wait. I stopped doing all my activities and rested. By the end of August, there was no change at all. UNFORTUNATELY, I'd made the decision to try to get treatment in Canada. I joined a private clinic (so no cheaper than going to the states). I had heard one of their doctors had treated people with Lyme and was very open minded. Because of my anxiety, having all my appointments face to face would be a big plus. And this doctor could help me with everything without me having to go to Seattle. But he needed to start from scratch a bit- re-test me for Lupus, thyroid problems etc. And they wanted to wait a month too. Well, long story short, I only started on antibiotics mid-December. By that point, I had brain fog, memory problems, horrible fatigue, pain in nearly all my joints and tendons etc. etc. Basically everything I had prior to treatment (just not quite as badly).

My biggest problem was that I was so worried about being TOO worried that I forced myself to discount all of my symptoms. I have notes to myself saying I was worried about brain fog coming back (I got very confused buying groceries) in October. But because I was worried about imagining things, and because my Canadian doctor turned out to be very hesitant to treat me for Lyme, I kept waiting. I'm kicking myself now- for the last 5 months I have had very nearly literally no life because of the amount of fatigue and pain I've had. I just moved to a new city, got a new job, but I was struggling at my job and had no energy to meet people.

At first my doctor said, at that point, that he was listening to the advice of an LLND who trained with ILADs (first LL person I saw, only one in Alberta). At my latest appointment, he said he would give me 1 more month of Biaxin, and then start lowering the dosage while he tried to "figure other things out". I'm going to try to fight with him about that- and I am talking to the LLND next week, but it was extremely disappointing. To spend so much money to join the clinic, then waste months (mostly my fault) not getting treated, and now to be faced with a doctor who doesn't want to treat me again... I don't want to pay to go back to Seattle when I am already paying for this clinic, but I might have to. Being active and outdoors was everything to me before I got sick- how I met people or was social, stress relief, healthy etc. I haven't been able to do any of it for 4.5 years, and going back to be unable to do literally ANYTHING (including swimming) made me incredibly depressed. But hey, my clinic offers psychologists as part of its fees, and the psychologist there doesn't think I'm crazy. So that's a plus.

My moral of this story: #1) I should listen to my body. I've never once imagined an illness before- I am not going to start now. #2) Be very clear about my concerns and mention every symptom to every doctor I see, or else I am not giving them a fair chance (because of anxiety I have trouble doing this, even with my previous LLMD- which is perhaps why my treatment stalled). #3) Don't settle for less than healthy just because un-educated doctors have tried to convince me it is "good enough", because "good enough" isn't.

I have my fingers crossed that treatment gets me back to 100% and lasts a while this time.

Sorry for the long post, but I didn't know how to shorten it...I like to talk I guess

Zeusy aka Nicole

Hi Zuesy!
I wanted to say I'm sorry for all that you've been through and that you have a need to be back, but welcome back!!! The important part is that you now know sooo much more now!!! Now you can get down to the business of getting the right medicine so that you can heal!

I'm a lot like you in that I down-play my symptoms as well, and I practically live to be outdoors. Hang in there, you will be able to once again enjoy being outdoors doing all those things that you love so much!! My last serious spell started 15 years ago, and I've reached a point with my treatment now that I have started to be able to be outside quite a bit!

Maybe we can help you find the right articles that have been written by other LLMD's and researchers that could help convince your LLMD to continue treatment? Here's one to start that's written by Dr. Joseph Burrascano Jr., titled "Advanced Topics in Lyme Disease" which advocates the use of abx until symptoms have resolved:

betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf

Stick to your guns here, Zeusy! You have every right to be treated for your infections.

Good for you, Zuesy!!! Don't let anyone tell you how you feel! You know the truth! And don't let them convince you that it's "normal for someone of your age" - whatever it is! Although I don't have any clue as to your age, you know how you felt just a couple of years ago!

It does get hard to believe sometimes that all of these things could be wrong with us all at one time, but it's not rocket science either! We have one infection, not 14 different 'conditions'. I would say be prepared to go back to your LLMD - at least then you will know that the doc treating you actually believes in what you have and you won't have to fight just to get treatment!

No matter what you decide or what happens though, we are here for you! Please do let us know how things go!

Oh Zeusy - I feel your pain! I always say dealing with the emotional aspect of this illness is worse than the physical symptoms! I've also had a tendency to downplay my symptoms - after so many experiences with doctors who just rolled their eyes at me, I've sort of come to want to please my doctor - be less "complicated." But the fact that they don't understand what's wrong with us says more about them than it does about us! It can be so hard to stand up for yourself, I know, but I'm so glad to hear you've got this confidence! That's half the battle - the motivation to fight for your right to be healthy and happy! I hope you get there soon!

Have you made efforts to detox? Sometimes that can make all the difference after years of antibiotic therapy. It's easier for our bodies to heal when all the detox pathways are clear and flowing efficiently.

I hope you manage to get through to your doctor - it's a shame we have to work so hard just to get them to listen to the facts!

I wish I could give you the answer! It's so hard to figure out where to draw the line, and sometimes we don't recognize it until after we've crossed it. From personal experience I've learned that sometimes pushing too hard to avoid making a bad impression leaves you making a bit worse of an impression than the one you were trying to avoid. I never used to want to take a day off, but I've made matters worse for myself by refusing to give into my body's limitations. I guess you just have to trust your intuition - although I know sometimes that can point you in several directions at once!

Remember that the little things can make a big impact. Getting enough sleep, eating healthy, resting when your body is screaming to slow down, etc. Just do the best you can do, and don't try to do more than you can handle. I know how tough it is to juggle wanting to be a good employee and dealing with an illness - it can be quite stressful! Just keep in mind that the best way to do that is to make your health a priority, even if it seems a little counterintutive.

And by the way, congratulations on finishing school! No easy feat, I'm sure!