It "clicked" for my Dr, as a series of neurological symptoms have bubbled up and progressed incredibly rapidly over the past months.

We sent a sample off to IgeneX, but she wants me to start on a Lyme protocal and see a LLMD ASAP, nomatter what those results are.

I must admit I'm a bit terrified at this prospect...How am I going to be able to keep working? If I can't work, how am I going to pay for the treatments?

They have warned me that with the herxing that will happen, I most likely will not be able to work...and I guess I am seeing that as a huge step backward right now (and I know how narrow-sighted that is).

Can anyone offer some wisdom on how to conquer the fear, and take that first step towards becoming healthy again? I have become so used to living the way I am now, I almost feel like I'd rather just stay this way than face the pain of treatment.

At least with the diagnosis you know what you are dealing with! Knowledge is power.

Not everyone herxes big time. You may be one of those. I have had very few problems, only just a day or two that I felt herxy since I started on abx 3 months ago -- muscle aches and brain fog. I was able to work the whole time, although a couple of days I felt like I was moving in slow motion.

Be sure to drink lots of water with lemon and try to keep your pH alkaline to minimize the problems with getting rid of the toxins. A high-percentage (70-80%) live food diet will help with this.

You also want to make sure to get enough sleep, particularly between the hours of 10 pm and 2 am. This is when the body's healing hormones are in full action.

I've heard that the FIR sauna is wonderful for toxin removal, but I haven't had the money to try one yet. Maybe Santa will bring me one!

I'm sure many of the others on this board will have suggestions for you also. Most of them have a lot more experience with this than I do.

I did manage one round of IV treatment while working. I managed several oral treatments while working as well. A couple times I did have to take time off (like when I first got sick with Lyme, it was meningitis) but my company had short-term disability coverage that I took advantage of.

Anyway, if you are not so sick as to be home/bed bound now, don't assume you will be! There might be some crappy days, but you might feel better after a bit of treatment too.

Since you seem to have LD, be thankful that you're being tested by IGeneX & your dr wants you to see a LLMD.

If you do have Lyme, there's absolutely no way you can just stay the way you feel now.
Lyme is a progressive illness, & without treatment, you would continue to get worse.
At some time in the future you probably would not be able to work at all. It's happened to so many people here on LymeNet.

Treatment for you may not be painful.
Sometimes, those who talk about having such a difficult time have had Lyme disease for 20 or 30 years.

Tell your LLMD about your concerns & your need to continue working.
We'll be here to help you as much as possible.

I wanted to write to you to give you some encouragement. Just a few hours ago I received encouraging words from others who had responded to my post. Their words were beautiful and it brought tears to my eyes. Try to read yesterday's "sleep cycle reversal/brain herxes" in the medical questions forum.
You are so lucky to have a non-lyme dr. diagnosis you. I'm amazed. I've seen almost 100 drs. and flown from one coast to the other trying to find answers to my bizarre illnesses. I had a lyme disease in 80's and they told me I was cured. I have been struggling for so long and figured out a month ago that I still have Lyme and it has the upper hand at this time.

I strongly urge you to take very proactive steps towards fighting this. Shut down the damage done to your body as soon as possible.

I certainly don't want to scare you but I would like to share a part of just this years drama with Lyme. In January I had my own business and I worked when I felt well. I was getting out of a chair, and pushed off with my hands. I felt and heard a pop in my wrist. It broke due to a cyst in that area. My bones have been weakening - I lost 3 inches in the last two years. -- i'm only 40.

To make a long story short that incident set off a cascade of events that triggered RSD. An autoimmune disease in which pain signals never shut down and basicly my dominant hand is destroying itself.

This then left the door open because I was so weakened. I am now in a wheel chair. I don't work any more. Just to get this letter off to you is difficult. But it is doable and I am grateful for this.

I threw some temper tantrums at first. And then I got over myself. I have learned to adapt.. Somehow I have peace with these circumstances. And, I'll never give up on the thought that I will be skiiing again one day.

In the mean time I have to learn as much as possible from this experience. I will need this knowledge for something else I will be experiencing in the future. I hope that makes sense. I thank God for everyday that I have on this planet.

Please don't stay stuck in your fear. Trust that you will be taken care of. As strange as this may sound to you I believe one must walk straight toward their fears. Their are always options. If you do experience pain and discomfort you will need to take it one minute at a time.

Talk to God and don't underestimate your angels (everyone has at least 2). They want you to ask for their help because they can't intervene without permission (unless you are in grave danger). Even if you just want a parking space close to the mall. They don't consider these requests silly because they are here to give us what we need in order to become our true selves. Try it - you have nothing to lose.

This is one of your life lessons. It may not make any sense to you at the time. Reach out to others here when you are confused or in pain. Your faith is critical in your healing process.

warm regards,
paisley

I know how absolutely lucky I am to have the physician I have, particularly since I am in WA state, where most physicians don't even consider lyme as a possibility.

I guess a large piece of my frustration is that with all of the diagnoses I have received over the years...I have struggled, I have come to terms, but I finally at this point in my life feel like I have perservered.

Most recently I was told by a neurologist that I had early onset MS. Another big pill to swallow in addition to all my organ systems shutting down, the fibro, CFS...but I could accept it, because I knew the outlook.

I have faced my dragons, spent much time in bed (or sometimes just on the floor), without work, and I guess it was foolish of me to believe that I was somehow on a path of stable health, because I am able to work at this moment. I love my job, I love finally being able to have my own place to live.

Knowing how hard it was to get to this point is probably what is the biggest piece in what is holding me back. I don't want to go back to laying on the floor, moving from place to place because I have nowhere of my own. But the offer of HOPE is what I guess will guide me.