How do I do this?

Hi guys. Before I go into all this, here's a quick summary of my story - I started showing obvious symptoms in July for about a month, everything found to be normal with my blood work at the time, CT scans of my head were fine, doc told me I had a bladder infection so was put on abx for 10 days. After that I noticed gradual improvement and finally felt about 90-95% better. That lasted for about a month/5 weeks and then fatigue started setting back in, and eventually a bunch of the neuro symptoms hit me hard - anxiety, depression, HORRIBLE insomnia, nerve sensations/neuropathy, twitching, etc. These lasted bad for about two weeks, then subsided a bit, then hit me again a few weeks later in November. And while some symptoms have waned a little again, I am once again stuck with this unbearable insomnia.

My problem is, I can't see the LLMD until mid January. I know it's less than two months to go now, but I spend everyday in mental chaos. I am SO scared I'm going to get worse before then. My head is driving me insane, and I feel like every waking moment is spent obsessing and worrying over this disease. I am not diagnosed yet, but I don't see what else all this could be. I don't know how I'm going to make it until this appointment, I just want the rest of this year to fly by, but when you're miserable, every day feels like an eternity.

I have been taking low dose melatonin to sleep, and it worked wonders for a month. Now that this insomnia has hit a second time, I had to double that dose just to get to sleep. It puts me out for maybe 3-4 hours, then once I wake up, I can't drift back off. I go into this very light sleep state where I don't feel conscious, and I dream, but it's not a good, regular sleep. It feels like something is malfunctioning in my brain and that sleep 'switch' won't turn off. On top of that, the anxiety hits me hard in my sleep too, and just makes everything worse. I've had nightmares on top of all this, and they are all Lyme related. It's like I can't even get a break from these thoughts as I'm trying to sleep.

I know my mind is making this worse, and I need to try and focus on distracting myself and staying positive, but it feels impossible right now. I know it helps nothing if my mind stays in the 'sick state.' But I don't know how to get out of it. I can't think of the last day I haven't cried several times. My parents are sick of it, and I don't want to keep putting it on them, but I am so scared I don't know who else to cry to. They don't deny that I'm sick, but they think I'm making myself sick and it's all a mental thing.

How do I make myself trudge on until my appointment? How do I calm myself and tell myself I will make it?

I know I could start herbs, but we are going on vacation for a week in December coming up and I don't want to risk herxing there. Is there anything very gentle I could try? I know everyone reacts differently. I am probably going to order some Avena Sativa to see if this will help my anxiety and nerves at least.

What else can I do for my insomnia? Is there anything I can take in conjunction with the melatonin? I am afraid I will get so bad I have to go on sleeping pills or benzos and I don't want to do that. I am only getting between 3-5 hours of sleep a night. Which is better than my last bout of insomnia, but I am still exhausted every day and feel like a walking zombie. I worry my body will just give out one day.

This is the worst mental anguish I've ever endured, and I have to endure it entirely on my own. I know I am making myself worse, but I don't know how to deal with this. Last night I had a rare moment where I was distracted by something for a bit, and then when I was done, reality hit me hard and I lost it. I don't want to be sick with this. I don't know how to be sick like this. I know everybody must feel this way when they are starting out, but this is the toughest thing I've ever had to face. I feel like my only option is to go back to my psychiatrist that I haven't seen in two years, but I fear she will just push to put me back on an SSRI, which will do nothing.

By the way, I am detoxing (detox baths, tea, lemon water, dry brushing, oil pulling, green smoothies) and have made changes in my diet, but it's only helping so much. Are there any supplements I can be taking in the meantime for my immune system in general? Sorry there are a lot of questions in this.

Post Edited (Buzzbomb) : 11/24/2014 10:00:06 AM (GMT-7)

I am not, Girlie, but have thought about either the eleutheros or ashwaganda. Are they similar?

Hi Buzzbomb—

I am so sorry you are struggling like this. It's very difficult and just about everyone here can sympathize from experience, unfortunately.

This may or may not work for you but it worked for me last year. I struggled throughout 2013 with chronic sinusitis and bronchitis, in/out of Urgent Care and the ER and cycled through 8-9 courses of as many different abx and steroids before I finally relayed I likely had lyme. I made an appt w/ an LLMD in Aug 2013 but didn't get into see her until January. It was a very long, arduous wait.

So I went to work researching everything I could find about lyme, co-infections, diagnosis, testing, treatment and resources for support. By the time I actually got the the appt, I had developed a comprehensive documentation of my symptoms, diet, sleeping habits, digestive habits, etc… and I had a full page of questions for the doc.

Not only did this focus help me understand what was going on and prepare for my LLMD appt ($600) but it helped refocus my energy away from despair and frustration.

Now, I had my bad days when I just couldn't sit at my computer and read and on those days I practiced breathing and meditation and tried to relax my brain or I went for a walk if I could or called a friend to find out what was going on in their lives…

Your detoxing sounds great. Diet is a huge factor in supporting your immune system—if you aren't already I'd go gluten, sugar and dairy free for now. probiotics are a must—even when you're not taking abx—everything needs to be in balance for a healthy immune function.

Another thing you might do is find a good ND and talk with them about any support you might need—check your thyroid and blood levels to help provide your LLMD with context for your treatment.

I understand how psychotic this all feels—I'd take my physical ailments over feeling crazy and helpless any day. Try to maintain focus and go easy on yourself.

Please report back—let us know how things are going!

-p

I take magnesium and ashwaghanda for sleep along with melatonin. My doctor told me it was safe to use up to 40 mgs of melatonin.

To help calm yours "head spinning" in addition to the adrenal adaptogens try KAL magnessium Glycinate, .

Mag calms the entire nervouse system, but it must be a mag that ends in "ate" or else its just a laxitive.

Hylands makes natural nerve tonic and something I call "Kids calm" but works for adults too.

The kefir I use has 12 strains in it...and according to the website that manufactures it, it says a one cup serving has 7-10 billion CFU. I've read I need much more than this? I guess this is good to start out with, though. One of my other big problems here is that I have issues swallowing pills...not issues swallowing per se, but it's a nervous reflex and I can't swallow pills unless they're very tiny. Are there any other probiotic sources that aren't capsules?

I will add the honey in more...and yes it is local and raw. I used to take a teaspoon everyday, but then I read about lowering even natural sugars, so I cut way back. I always put berries in my smoothies, too.

See it you can be put on a cancellation list, or call weekly to see if they've had a cancellation. I was told the first appointment I could get with LLMD in Missouri was 6 months out, but I called in desperation one day and they had a cancellation later in the week so they worked me in. Good luck.